Jon 4-16 missing forum some days
Susan D's 4-16 reply to Clara D's 4-14 hospice care and ICD use
Chuck F's 4-16 reply to Susan A's 4-14 medical records and employers
Chuck F's 4-16 reply to Mary Anne M's 4-14 high blood pressure
Oliver E 4-16 questions about my symptoms
Jon's 4-16 reply to Oliver E's 4-16 just more questions
Sandy N's 4-16 reply to Peter S' 4-14 revising earlier post
Sandy N's 4-16 reply to John E's 4-14 doctor change sometimes necessary
Giorg 4-17 supplements and job/illness questions
Jon's 4-17 reply to Giorg's 4-17 job/illness issues
Mona C 4-17 problems for 17 year old CHFer
Jon's 4-17 reply to Mona C's 4-17 what caused his CHF?
Joseph S 4-17 questions about procedures & disability?
Tom G 4-17 please help with my mom
Mary Anne M's 4-18 reply to Laura's 4-11 swelling but not in my ankles
Kev P 4-18 questions about treatment & my future
Bill H's 4-18 reply to Mona C's 4-17 I know how your son feels
Norma L's 4-18 reply to Tom G's 4-17 my experience
Jon 4-18 just for your information
Mary Anne M 4-19 Tylenol & Coumadin, pain reliever question
Dave T's 4-19 reply to Joseph S' 4-17 Coreg, EF, my experience so far
Peter S 4-20 taking both ACE inhibitor and ARB
Wendy N 4-20 seek similar experiences, what to expect?
Bill H's 4-20 reply to Mary Anne M's 4-19 pain relievers
Debbie A 4-20 could chiropractic be related to heart attacks?
Wayne R 4-20 has anyone had this sensation?
Jon 4-22 update on my situation & some thoughts
Michelle D 4-22 how does humidity affect you?
Sandy N's 4-22 reply to Wendy N's 4-20 hang in there
Chuck J's 4-23 reply to Jon's 4-22 office jobs
Jon's 4-23 reply to Chuck F's 4-23 office jobs
Chuck F's 4-23 reply to Michelle D's 4-22 temperature and humidity
Susan A 4-23 seek job with CHF experiences
Richard B's 4-23 reply to Wendy's 4-20 coping with heart failure
Ben B's 4-23 reply to Jon's 4-22 office jobs, my experience
Jon's 4-23 reply to Ben B's 4-23 office jobs
Norma L's 4-23 reply to Jon's 4-22 office jobs
Lee H 4-24 lots of symptoms - who do I see?
Jon's 4-24 reply to Lee H's 4-24 about your Visa question
Christine A's 4-24 reply to Susan A's 4-23 my experience, work, disability
Jacky B's 4-24 reply to Jon's 4-22 exercise, donation question
Jon's 4-24 reply to Jacky B's 4-24 exercise, donations
James N 4-24 seek BiV pacemaker/exercise experiences
James N's 4-24 reply to Jon's 4-22 work versus health and more
Linda O 4-22 seek CHF doc in Chico, Marysville, California area
Gary L 4-25 shortness of breath only symptom - questions
Sandy N's 4-25 reply to Joseph S' 4-17 things will get easier
Cathy D's 4-25 reply to James N's 4-24 job stress, change is very hard
Scott Brown's 4-25 reply to Jon's 4-22 have you considered IT work?
Gena C 4-25 can he be really better this fast?
Jon's 4-25 reply to Gena C's 4-25 feeling good after starting treatment
Pam S 4-25 if you work, remember matching donations
Terry P 4-25 seek heart transplant rating information
Jennifer G's 4-26 reply to Jon's 4-22 idea for printing job & Coreg experience
Jon's 4-26 reply to Jennifer G's 4-26 my printing experience
Vicki S 4-26 sleep aid question
Jon's 4-26 reply to Vicki S' 4-26 sleep aids
Tunny G 4-26 seek ICD implant procedure experiences
Jacky B 4-26 what does this PR interval mean?
Jon's 4-26 reply to Jacky B's 4-26 PR interval in ms
Lowell P's 4-26 reply to Jon's 4-25 DH
Jon 4-27 posts and trucks
Patricia P 4-28 working a job with heart failure
Sandy N's 4-28 reply to Tunny G's 4-26 ICD/pacemaker experience
Dee E 4-28 can a CHFer have a liver transplant?
Stephanie H's 4-28 reply to Tunny G's 4-26 ICD/pacemaker experience
Mary Anne 4-28 Coreg question
Jon's 4-28 reply to Mary Anne's 4-28 Coreg versus Toprol-XL
M Wilson 4-28 intro
Susan L 4-28 how do you cope with CHF and a job?
Sean M 4-28 can my mom get better?
Lowell P 4-28 BNP quandary
Jon's 4-28 reply to Lowell P's 4-28 BNP
Charles W 4-28 does anyone else have these?
Susan L's 4-29 reply to Jon's 4-28 to work or not to work?
Mikey S 4-29 very tough cardio exercise program - anyone else?
Bonnie B 4-29 seek California heart failure doc & more
Susan D's 4-29 reply to Sean M's 4-28 what meds does your mom take?
Tunny G's 4-29 reply to Sandy N's 4-26 thank you for your reply
Tunny G's 4-29 reply to Stephanie H's 4-28 thank you for your reply
Chuck F's 4-30 reply to Lowell P's 4-28 BNP levels, physician assistants
Jon's 4-30 reply to Chuck F's 4-30 symptom-based therapy
Chuck F's 4-30 reply to Charles W's 4-28 tingling in arm
Lowell P's 4-30 reply to Jon's 4-29 talking to docs, exercise
Jon's 4-30 reply to Lowell P's 4-30 talking to docs, exercise
Kooky F 4-30 seek answers to these up and downs
Sandy N's 4-30 reply to Tunny G's 4-29 I do have a combination ICD/pacemaker
Jon's 4-30 reply to Susan L's 4-29 to work or not to work with CHF
Helen L 4-30 has anyone else been in this situation?
Jon, April 16, 2005 - Hi all, Sorry for no posts yesterday. I have a series of job interviews for about a week starting yesterday that all occur after I get off my current job. With donations extremely low this month, I have to concentrate on getting a higher-paying job instead of relying on donations to give me time to do the heart forum each night. Thanks to everyone who has donated this month! Last night's interview was way out in Riverside so I got home late. The interview was a success in that they came to me, want me, and pay well with good benefits. However, I don't think it's the job for me. So it goes. Jon.
Susan D's April 16 reply to Clara D's April 14, 2005 - Hi Clara, If you were to suffer from end-stage HF and choose to use the services of hospice, part of that process is turning the ICD off. Contrary to popular opinion, hospice is not about dying sooner but actually about living better. Due to the uncertain nature of CHF, the "rules" of hospice have really changed and there is no more 6 month time frame. People with CHF can be enrolled in hospice for as long as needed, with a script from the doc. Medicare covers this service and your drug charges. A patient cannot however continue ICD use or participate in experimental drug studies or use medical intervention (life support type stuff). The point is to live well and eventually die peacefully. Your directives should be honored. firstname.lastname@example.org
Chuck F's April 16 reply to Susan A's April 14, 2005 - Hi Susan, It is not uncommon for medications to cause drowsiness, tiredness and an overall blah feeling, especially blood pressure medications, beta-blockers and several others. I would never release medical information to an employer and they should never ask for any. Having been a nurse for over 20 years I have only seen one or two instances where an employer did this and it backfired on them. Keep in contact with your union steward, especially inform your health care provider of this and make sure they are aware of any effects you may be having, with all the advances over the past several years they may be able to adjust your medications.
If this continues I would definitely contact an attorney. In the meantime I would also ask for copies of your personnel file, especially any performance reviews in the past. Good luck. email@example.com
Chuck F's April 16 reply to Mary Anne M's April 14, 2005 - Hi Mary Anne, What should be done about blood pressure depends on many factors including age, disease processes and others. Ten years ago your blood pressure would have been fine. Recently "normal" blood pressure values were changed. By the looks of your medicine and not knowing your medical history, you are not very far off the mark. Most importantly I would discuss this with your health care provider. Where does he want your pressure? Were these pressures done in the office or at home? What were you doing for the ten or fifteen before these pressures were taken? Currently, the standards say that stage one high blood pressure ranges are 140 to 159 over 90 to 99 and stage two high blood pressure ranges are 160 and higher over 100 or higher. There are many variables at play here and your doctor is the best person to answer your question. Good luck. firstname.lastname@example.org
Oliver E, April 16, 2005 - Hi everyone, I am writing because I'm at a loss as to what to do and wonder if anyone else out there has some thoughts. Basically I've had the symptoms of mild heart failure (some shortness of breath, palpitations, feeling of swelling, chest pains) for over a year now. On my echos and cardiac MRIs I'm showing a mild to moderate enlarged heart (LV 6cm diastolic, 103ml/m2 LVEDI, 4.4cm systolic) but my ejection fraction has been preserved at 55 to 65% and is not declining (so far anyway). My arteries are normal. There has been no indication of diastolic dysfunction anyone has picked up.
My heart failure doctor has me on ab ACE inhibitor (enalapril 15mg per day) but doesn't think I need to be on a beta-blocker (he even said he wasn't sure I just didn't have a naturally large heart). Clearly I'm distressed about the whole situation as I'm only 28 and prior to this was a healthy and happy person. Should I push my heart doc to put me on Coreg next time I see him? I've heard the side effects can be bad and don't want to risk it if I don't need to. How bad are they? Would a mild dose be beneficial? Is it safe to be on beta blockers for life?
Sorry to bombard you all with questions. This is just the most frustrating disease there is. I feel incredibly proud of all of you who handle far worse function than me a lot better, and thank goodness for Jon! email@example.com
Jon's April 16 reply to Oliver E's April 16, 2005 - Hi Oliver, I have a few questions before trying to make any potentially useful comments. Do you have valve dysfunction and if so, how much? Do any specific parts of your heart show lack of proper movement at any time during the heart's beating cycle? Do you have liver or kidney dysfunction (both of which can cause feelings of fullness or swelling)? Can you exercise without problems? How is your sleep and how do you feel upon awakening each morning? I just wonder if heart failure is the cause of your symptoms. Jon.
Sandy N's April 16 reply to Peter S' April 14, 2005 - Hi Peter, Believe me, my doctor is indeed concerned about statistics. He is working with several other cardiologists in the Tampa area in a study on heart failure. My medical file is in his study dealing with my results after having the ICD/pacemaker implanted - I'm feeling that much better.
When he told me not worry about statistics, he was referring to me keeping myself worry free to enjoy life one day at a time and to let him do the worrying for me. I was very lucky to have found him almost two years ago after two duds told me to go home because there was not much more they could do for me. Thanks for your concern. firstname.lastname@example.org
Sandy N's April 16 reply to John E's April 14, 2005 - Hi John, Your story is kind of like mine. Almost two years ago I was diagnosed with asthma. After 6 months I took myself to an ER and they told me I had heart failure. I saw my first cardiologist and he sent me home telling me that without a heart transplant I had a year to live. After discarding two cardio docs, I am now seeing a cardiologist I like who specializes in CHF. He has me stabilized and no longer afraid of dying. I'm so glad you did not settle for the first doctor that came your way! Good luck to you. I think your first doctor was very wrong and that he has no idea about CHF and the ways it can be controlled. email@example.com
Giorg, April 17, 2005 - Hi Jon, If I can ask, in your interviews do you talk about your DCM? What do you tell about that? That sooner or later it could get worse again or even with the help of God, never get worse again? Do you tell that overtime for you is not an option in any case? Do you tell that sometimes it may happen that you retain fluid and you have to stay at home and rest in order to get fit again? How do they react? Thank you, if you can give us some answers, for me you are an inspiration.
Also, thanks for your page about supplements - with L-arginine I feel better! L-Carnitine did not work for me, but I did see a difference with L-arginine. By some months I think I will try also taurine. I want to see the reaction of my body to one supplement at time. Thank you. firstname.lastname@example.org
Jon's April 17 reply to Giorg's April 17, 2005 - Hi Giorg, I'm glad the arginine helped! I don't tell potential employers that I have heart failure. My time off work due to CHF on my resume is listed as a time of learning web authoring and graphics editing, developing and maintaining a web site. However, if they are smart enough to look at the site (which has the url clearly listed on my resume) they would be hard put to miss my illness, wouldn't they? <g> I would guess that's one reason I had so much trouble finding any job and why I am working so cheap now. If a potential employer flat out asks me, I will simply tell them the truth and they can take it as they like. It's said that God watches over children and fools, and I am both according to those who know me so I'll be all right. ;-)
I refuse overtime for the reason that I work two jobs and therefore can't do overtime. This site is my second job and that is the honest truth. I have not missed work due to heart failure yet although it was close before I raised my meds doses back to pre-improvement levels. I take my diuretic at 3:00 PM when I get off work and this allows me to get it out of my system by bed time while not making me do bathroom runs during the day.
I have a job interview Monday evening and another Wednesday evening, both for jobs much easier physically than my current job although the hours would be harder to make work overall. Posts may be late but I'll do what I can. Jon.
Mona C, April 17, 2005 - Hi Jon, Your web site is great. My son, 17 years old, suffers from dilated cardiomyopathy. His EF is 17 to 22%. He has had three catheterizations and is on 120mg Lasix, 100mg Coreg, 25mg Aldactone, 30mg enalapril, 0.75mg digoxin, and 20mg metalozone.
He went from being a rough and rugged football player weighing in at about 290 to 310 lbs to being able to walk about 30 minutes a day and not lifting over 25 lbs. His fatigue won't allow him much more freedom than that. Now his doc says he must lose weight to live. I buy healthy foods, no salt but his depression and inability to do things has just spiraled out of control. He has refused to seek counseling and insists that transplant is out of the question.
His friends are wonderful about coming over playing cards and that sort of thing but are there any other suggestions to helping him lose the weight he needs to lose and gain more confidence? Sometimes I find some of his meds in his room on the floor (Lasix) where he sneaks and doesn't take them. Who wants to go fishing, cruising, movies and such and run to the bathroom every few minutes? Are there any books or help guides you can suggest? I fear he is in self destruct mode. His doc is wonderful and says this behavior is not uncommon for teens in this condition but if he refuses counseling, what else can I do? email@example.com
Jon's April 17 reply to Mona C's April 17, 2005 - Hi Mona, One critical piece of information is missing here - what caused his DCM? The Manual is the best self-help guide I know (I hope that doesn't sound arrogant, but there you have it). There are also other forums at our links page, which include one for the younger set at www.network54.com/Forum/136584. Feel free to ask him to talk to me. With 10 years of CHF experience and having been a weightlifter when I got it, maybe I can relate despite being an old man in his 40s. <g> Jon.
Joseph S, April 17, 2005 - Hi everyone, I would like to start out saying this site is wonderful. I found the site right after I was diagosed with CHF. This forum was closed at that time but I read all The Archives (over and over) and I now know I am not alone. I would like to give you my history now.
I am a 36 year old black male who was pretty healthy or so it seemed, until one night in September of 2004 when I leaned up in bed and couldn't catch my breath. Suddenly all I remember is my wife crying with me on the floor in a puddle of sweat not knowing what was going on. I went to the emergency room and was admitted because my blood pressure was 210/120 and I had severe chest pains. They put me on IVs and every 1/2 hour gave me medication (labetalol) to lower my blood pressure. After a day they sent me home and told me to follow up with my family doctor.
He put me on labetalol and clonidine and told me come back in a week. However when I came back in a week my pressure was 160/100 so he said he couldn't do anything for me and referred me to a local internist. I saw this doctor in December (I had to go to human services to get Medicaid) and explained the situation. He immediately sent me to the local hospital for blood work, EKG, chest x-rays, and an echo. We got the results in early January of 2005 that showed my kidneys weren't functioning 100%, my heart was stretched and very thickened, and I had an EF of 25%.
I totally lost it. I just knew I was gonna die the next day. I became totally depressed, lost my job and for the next 4 months would go see a kidney doctor, cardiologist, liver doctor, vascular surgeon, psychologist, and spend 7 days in the heart center, have a stress echo which revealed I may have had a silent heart attack as well as an EF of 25%.
That brings us to present day. I am on diovan at 160mg, Norvasc at 10mg, aspirin at 81mg, Coreg at 25mg twice a day, hydrochlorathyazide, Lexapro,and trazadone. Now to my questions.
I go back for an echo on May 18. How much do you think my EF will improve over this short period of time? I have also applied for SSD and have a company representing me. Social Security got my paperwork on April 8th but I have to have surgery on my right leg because I have arterial disease and blockage in my arteries that they couldn't get to when they did an arteriogram in March so they have to put me to sleep and cut into me. They said I will be in the hospital for 2 to 3 days. Does anyone know the recovery time for this procedure?
Anyway, do you think all my procedures will be done by the time department of determination services sends for my hospital records? My last surgery is May 31st. If they are, will this increase my chance of winning my case the first time out? I'm in a financial crunch (as you all know about). Thank you for your time. firstname.lastname@example.org
Tom G, April 17, 2005 - Hello, I come from Ireland. My mother who is 82 was recently in a hospital for 6 weeks with leg ulcers. During this time her health went down a bit and we were told by her consultant that she was battling CHF. We were shocked. She has had irregular heart beats for over 30 years and was being treated for this with digoxin (Lanoxin). She might get one or two attacks a year and they would last for about 3 hours. As she often said to us, sometimes it felt that there was no heart beat at all at times.
Her regular doctor never mentioned heart failure to us, so really we were taken aback. Since leaving the hospital she is now on sotalol at 80mg per day, furosemide at 20mg, Istin at 5mg per day, and she also takes Caprin 75mg and Seroxat 30mg a day. Could someone please tell me if this is the right medication for her condition?
Her regular doctor is really not that interested in his elderly patients. She is very breathless, has had 2 bouts of irregular heartbeats in 3 months since leaving the hospital and she has to drink 8 liters of water a day! She's never ever had a pain in her chest and her fluid retention is very minimal. You can barely see it at night round her instep. Can someone help us out? Please also contact me at my e-mail address if you can. Thank you. email@example.com
Mary Anne M's April 18 reply to Laura's April 11, 2005 - Hi Laura, My hands and ankles never swell. I hold all my extra fluid in my waist area and abdomen, as well as over my eyes. I can tell by looking in the mirror, if I can't see my eyelids I am holding fluid. Doctors have been checking my ankles for 5 years now and they don't swell. Sometimes they want everyone to fit into a certain pattern. firstname.lastname@example.org
Kev P, April 18, 2005 - Hello everyone, This site is truly a great thing. I am a 30 year old that was diagnosed with mild cardiomyapthy with an ejection fraction of 40% and a mild enlargment of my left atrium. I have been going through a lot of panic researching everything I can to - as my doctor says - "manage" my future since I have 2 toddlers at home. This situation is apparently hereditary, as other of my ancestors had heart failure and passed away between the ages of 50 to 70 when less treatment was available (the history is why I finally decided to get tested).
I basically have no symptoms. I still actively swim about 2000 meters 5 days a week. The bad news is that none of my ancestors was ever tested at age 30 so I don't know if I'm coming down with something sooner or what not. I also don't know when my toddlers will need to be tested. Does anybody know? In terms of management, I've started taking ACE inhibitors and Coreg. They are currently ramping up the dose and I've been doing okay.
In terms of management, my understanding is that taking the meds will in theory keep my EF up and keep my heart the same size indefinitely? Or will my heart actually have a chance to get smaller? Diet-wise and supplement-wise, should I be taking some now, being that level of energy is not a factor yet? I have to think about my situation in terms of a long period of time with effect on my children most of all. Thanks. email@example.com
Bill H's April 18 reply to Mona C's April 17, 2005 - Hi Mona, I kind of know how your son must feel. I went from being very active to not being able to do a whole lot, with a ten pound weight limit. Even though I'm in my mid 50s it's still a hard pill to swallow. I think your son needs a little time to adjust to the fact there are restrictions now; I still have a hard time with that one. The thing that helped me the most my doctor sent me to cardiac rehab. It was there that I found I could do more than I thought I could. As I'm not real good at putting my thoughts down, I would be happy to answer any questions if you or your son want to e-mail me. firstname.lastname@example.org
Norma L's April 18 reply to Tom G's April 17, 2005 - Hi Tom, Your mother and I are about the same age. I will be 82 in September. I was being treated for bronchitis and pneumonia pretty regularly. This new doctor said something is wrong and I shouldn't be having these problems all the time. He had me x-rayed and gave me all kinds of heart tests including a heart catheterization. He diagnosed me with CHF.
I don't know the names of the meds your mom is taking but I take an ACE inhibitor Mavik, a beta blocker Toprol-XL, Lasix, potassium, and mega-vitamins. I also take CoQ10, Protonix when I need it, and a clacium-magnesium-zinc pill. I am doing very well, but get tired pretty easily. I walk a lot, work out at the gym 2 or 3 times a week. I may be overdoing it, but I want to stay healthy! By the way, I am Irish (O'Neal). email@example.com
Jon, April 18, 2005 - Hi everybody, In case you wondered why sometimes I answer a lot of posts and other times I don't: It is often a matter of how much e-mail I have to do that day. If I am swamped with e-mail, I am less likely to answer a lot of posts. Just thought I should toss that one out there. Jon.
Mary Anne M, April 19, 2005 - Hi Jon, I just read the info on taking Tylenol and Coumadin. No one ever told me that Tylenol can increase the risk of internal bleeding for people on Coumadin. I take Tylenol regularly, sometimes as much as 3000 mg per day. I am amazed but grateful to have this info and will discuss it with my doctor. Does anyone have other suggestions for pain relief? I have CHF with a mechanical mitral valve and need Coumadin to prevent blood clots. What a wonderful source of info this site provides. Thank you! firstname.lastname@example.org
Dave T's April 19 reply to Joseph S' April 17, 2005 - Hi Joseph, I have DCM and I remember my first echo after going on Coreg. About nine months after being on lisinopril, my doctor started me on Coreg. After 9 months on Coreg, though not yet at my target dose, I had an echo and my doctor said he would be happy if my EF improved at all and 35% would be incredible. My EF was 22%!
I was obviously very disappointed. I continued to monitor this site, and to exercise, eat right and take my meds. A year later and my EF has improved back to 40% with an overall improvement in left ventricular function. Though my heart function has improved, my energy level has decreased and my heart continued to enlarge on my last echo. My doctor put me on Inspra. I just keep trying to do the next right thing. Good luck! email@example.com
Peter S, April 20, 2005 - Hello, I believe there have been differences of opinion among cardiologists as to whether use of an ACE inhibitor or ARB should be mutually exclusive or whether the two can be used together where tolerated by a given patient. As I understand it, the FDA has now approved (in February of this year) dual usage as approved therapy based on the CHARM-added trial. The gist being that the two classes of medication work slightly differently and both can be beneficial. It would be interesting to me to see if any of your site visitors have either raised the subject with their CHF doctor or whether their doctor has proactively changed medication strategy. I have not seen my own doctor since the study came out, but intend to raise the point when I see him next month. Perhaps dual use may not fit my particular situation but I would like to be assured he is completely up to date on what fellow professionals are discussing. PeterSperl@cs.com
Jon's note: This is explained at chfpatients.com/ace.htm#charm and chfpatients.com/ace.htm#arb.
Wendy N, April 20, 2005 - Hi everyone, My mother is only 54 and was diagnosed with CHF. Apparently she had a heart attack years ago and no one caught it. She has been told that 2/3 of her heart is useless and her condition is severe. I am concerned that with her relatively young age, her quality of life will be substantially affected. We have been told that basically, she could die at any time. Is there anyone who has been through something similar who can help me to understand what is happening? firstname.lastname@example.org
Bill H's April 20 reply to Mary Anne M's April 19, 2005 - Hi Mary Anne, I use a non-aspirin product. The name of mine is American Fare from K-mart, just as long as it is non-aspirin it shouldn't matter where you get it. I hope this helps. email@example.com
Jon's note: I don't want to seem contrary, but non-aspirin doesn't guarantee safety. Acetaminophen (Tylenol), and the whole list of NSAIDs can cause different problems for CHFers. I actually take a prescription pain reliever because it poses less risk for promoting CHF episodes.
Debbie A, April 20, 2005 - Hi, I'm new here and am wondering if anyone can help me out. My mother had her third heart attack two weeks ago. The first one happened in 1992, the second last March in 2004 and as I have mentioned, the third two weeks ago. After last year's heart attack she was diagnosed with congestive heart failure. Of course the one two weeks ago was directly linked to CHF again.
Here is the part that seems odd. She was seeing a chiropractor last year for sciatica pain in her back and leg when she had her heart attack. Her pain from the sciatica seemed to go away on its own. Then again at the beginning of this month, the sciatica pain came back. She decided to see a chiropractor (different one this time) again for the pain. Ironically, she had another heart attack after the third treatment as the last time. Do any of you think that her going to the chiropractor and her bouts with CHF/ heart attack are linked? She is convinced that it is so I am just wondering. Thanks for any and all help on this topic! firstname.lastname@example.org
Jon's note: Offhand, I would guess it's not the chiropractic treatments but rather that the pain is not sciatica or that pressure on the sciatic nerve is caused by a heart-related condition indicating serious heart events happening or about to happen.
Wayne R, April 20, 2005 - Hi, I was wondering if anyone who follows this site has ever had the following sensation. It feels kind of like striking the funny-bone on your elbow, only not nearly so intense. It starts in the area of the inside edge of my left scapula and creeps up and across the top of the scapula. This occurs mostly after exercise and it lasts only very briefly. I never experienced this until after I had IDCM but my doctors just shrug when I mention it. email@example.com
Jon, April 22, 2005 - Hi everyone, Here's an update on my post-improvement job exerience, followed by my thoughts on it in general. No one at the company where I worked the past 7 weeks knew I had ever been sick. They hired me through a temp company who did know but did not share the information. At 4 weeks (instead of the usual 90 to 180 days), I was moved to a more complex kind of printing press (a base press) that is set-up, fed, operated by, and off-loaded by one person all day instead of by two people. At this point, the Lead Man suggested that I apply for a "direct hire" job and I did so.
For the 2 weeks afterward, I ran base presses of several varieties and learned quite a bit. The work was considerably more physical than during my first 4 weeks on 2-man machines but it did seem like something I could maintain. In the last week, due to high customer demand, the workload expanded considerably, causing material shortages with little notice. This just meant that I was moving from press to press, up to 4 times per shift.
I wound up on a type of base press that was much more physically difficult to run at the proper speed. After talking about it with my wife, Thursday (yesterday) I went in early and quit. As a temp I was not under any obligation to give a set number of days notice before doing so. I was far more worn down than I realized and it was obvious that I could not physically sustain this kind of work.
As a result, I am now limiting my renewed job search to office positions only. I have had a couple of good interviews this week for such a position but have no idea if I'll land that particular job. However, we thought it better to quit the physical job now than for me to slip back into class 2 or class 3 heart failure.
Why do I bring this up? When starting the last job, I was in excellent physical shape. I was at my proper body weight (clear down to 178 pounds from a high several years ago of 216), muscular from daily weightlifting, and aerobically fit from daily treadmill sessions of well over 30 minutes each at 4 miles per hour. My EF was 55% - normal. My Vo2max was 30 ml/kg/min - normal, according to my doctor. So I should have been in a great position to handle the job I landed, which was physically "busy" but did not require any heavy lifting.
The fact is that even with all the excellent "numbers" I just couldn't sustain the work over time. So in my case at least, normal numbers on test results and class one symptoms (meaning only a few and only very rarely) did not make me able to do whatever I wanted to do. Obviously I still have definite limitations due to my heart failure, whether it is "visible" or not. Remember that I tried reducing my CHF meds by half and got worse quickly. I re-raised my drug doses and quickly improved. Thus, I do not believe the meds are what is slowing me down, but rather the heart failure itself.
An interesting note is that my resistance training is still working - the amount of weight I lift is still going up and has steadily. Therefore it is not the anaerobic load (short intense efforts like a weightlifting movement) but rather the all-day aerobic type load (long-term non-stop efforts) that nailed me over time. That's in spite of really dedicated aerobic exercise for a long period before getting the job. Not only did I lift weights and walk every day as stated, but I also did all the shopping, cooking, and dishes.
Does this slow wearing down apply to every CHFer with improved numbers? I doubt it. However, I must assume that it will apply to a significant number of us who see greatly improved test results. For that reason, I suggest that you learn and improve white collar skills if you go on Disability after diagnosis. You will be better positioned to re-enter the workforce when your numbers do improve down the road. Yes, I believe most of us can see improved health in time with proper treatment and lifestyle, although obviously there are some CHFers who will not improve and others who will decline.
I do believe that in spite of my fitness level not allowing me to do this particular job that all the exercise has paid off beautifully anyway. When my heart and lung "numbers" first went back to normal, I still felt awful. It was only after getting stronger and more physically fit from exercise that I began to also feel better. I feel so much better post-exercise that it's hard to believe. I can't stress how important it is to exercise as well as you can in your individual situation. Getting fat and deconditioned is an easy trap for us because it is just so hard to get on track when you feel tired and short of breath all the time to start with. Been there - remember that I hit 216 pounds when my ideal body weight (realistically - not according to some chart) is 175 to 180 pounds.
This is all just food for thought. Feel free to question or comment. And of course, it's back to being financially strapped until I land an office job. Don't ya hate being short on money all the time?! Another side effect of heart failure in a way, isn't it? Jon.
Michelle D, April 22, 2005 - Hi, I hope everyone is doing well. I am out in Kansas for my annual spring visit and it has been awfully humid in the last couple of days, almost unbearably humid to tell the truth. Lots of lightning and thunder, and I was just wondering if anyone out there has had this problem. I feel totally sapped by midmorning if I am out doing anything. I mean, I feel like the air just can't have any oxygen in it! I have shortness of breath so much that it alarmed me and my sister.
I have decided to lay low and stay in the house where the air is better until the humidity gets better. I never really knew that humidity could affect me like this. I guess San Diego, where I am from, has so much less humidity that I never thought about it much. I don't feel bad or sick or anything, so I am not too alarmed but if anyone knows if this is normal, please let me know. Thanks, Michelle D. firstname.lastname@example.org
Sandy N's April 23 reply to Wendy N's April 20, 2005 - Hi Wendy, I was 56 when diagnosed. My doctors also don't know how I got CHF. He told me that the left side of my heart does not work. I was really sick at first but after learning all I could about heart failure I found the way to help myself, along with my doctors recommendations and meds and my ICD/pacemaker. Continue to read Jon's site. Continue to be there for your mom and hopefully she will do just fine! Good luck. email@example.com
Chuck F's April 23 reply to Jon's April 22, 2005 - Hi Jon, Be cautious with the type of office job you go for. I was in a nursing management position for the last seven years before I went into class 3 heart failure and developed my aneurysms and all my other problems. There is research suggesting a high stress job might be more demanding on the body's major systems than physical. I am living proof of that. I weighed 225 pounds and was preparing for an Eco-Challenge before my first heart attack at 37 years of age. By 44 years of age I had developed class 3 heart failure, had 2 heart attacks, seven stents, a ventricular aneurysm and a septal aneurysm, plus the depression and all the effects that 21 pills daily lead to.
Now that I am retired at 46 years of age, had a portion of my heart removed, am still waiting on disability to kick in (after 9 months!) I am doing better than I have in a long time. I have attempted as well to return to work and unfortunately cannot tolerate more than a couple of hours at a time. Just be careful my good man, and if my disability ever kicks in I will send some of it your way for this fabulous site! firstname.lastname@example.org
Jon's April 23 reply to Chuck F's April 23, 2005 - Hi Chuck, The switch from blue-collar to white-collar isn't optional in my case since I now know I can't sustain a physical job. For me stress is an additive factor, not a cause of physical problems. I am currently interviewing for administrative assistant positions, what we used to call secretaries. My typing is a bit slow at 55 words per minute adjusted but that will quickly increase with practice. With my communication skills and software knowledge I hope to land one of these positions for enough experience to widen my options down the road. The fact that I envision a "down the road" shows how far CHFers have come in the past 10 years! Jon.
Chuck F's April 23 reply to Michelle D's April 22, 2005 - Hi Michelle, It is perfectly normal for patients suffering from heart failure or lung disease to have difficulty breathing in high humidity, high temperatures (over 80 degrees F) as well as low temperatures. I generally go by the rule if it is below 32 degrees or over 80 degrees F I do not go outside. If it unusually dry around here (Ohio) I will extend that to 90 degrees.
Picture it this way - when I was a paramedic in the medevac in El Paso, Texas (the desert), on very hot dry days we could only take one patient due to the very thin dry air. When we were in jungle areas we could carry four patients due to the thickness of the air being able to provide more lift. Keep in mind also that the more difficult it is to breathe the higher your blood pressure and pulse goes. After awhile you will learn what you can and cannot do. email@example.com
Susan A, April 23, 2005 - Hi Jon, I hope you land a job that will work with your medical situation. I agree that some of us will improve, some of us will not, and some of us will decline. I think you are very smart to limit your search to office jobs. I believe it is smart to be as physically active as possible, but not more physically active than necessary. I guess this underlines the importance of finding the best employment fit, and always putting your health first. It's true that it is not much fun to be strapped financially. I would also agree that having financial woes is preferable over compromising your health by working the wrong job and that having a healthy financial and physical state would be optimal. Can we find both? I think and hold hope we can.
I am currently in the "some of us will decline" catagory with a steady downward trend of my EF and increasing symptoms despite being on major doses of all the heart medications (50mg BID Coreg and 40mg BID lisinopril, and a host of others). I have a white collar, high stress job that I am in danger of losing. Today they pulled me off all casework responsbilities and told me that starting Monday I will be filing and doing other clerical tasks, until they have more information from my doctors how my dilated cardiomyopathy affects my ability to do my job. Maybe I have the wrong job but I find it hard to let it go witout a battle.
While I am mad and sad, I also recognzie I will be the highest paid clerical person in my office. :-) That is, until they decide what to do with me. It is starting to look unlikely they will be able to accomodate me. The road ahead looks uncertain, both financially and medically. I like what the Christian music singer Sarah Groves sings in one of her songs, "All I have need of, His hands will provide. He's always been faithful to me."
It would be interesting to hear from others how they have found the right balance or fit between work and their heart conditions, what they have encountered in their places of employment and how they have dealt with. So I send out a challenge to The Beat Goes On readers: Give this issue some thought and share your thoughts about how you have found the right balance between work and your health. Susan A. firstname.lastname@example.org
Richard B's April 23 reply to Wendy's April 20, 2005 - Hi Wendy, I am in a similar situation. I was diagnosed with CHF five years ago at age 62. I too had an undiagnosed or silent heart attack at some point in time and ended up with an ejection fraction of 24% as opposed to the 55% of a normal heart, so I'm in about the same boat as your mom.
While it's true that CHFers have a higher rate of sudden death, it's still not something to dwell on. With proper treatment we can still have a long and productive life. I can't over-emphasize how important it is that your mom find a CHF specialist. Don't settle for a general practitioner - they simply don't have the experience or knowledge to treat CHF.
In my experience the most important things to do, in addition to finding a CHF specialist, are to research your mom's condition, read the posts and The Manual on the this site. Research the medications your mom is taking so you will know what to expect from them both in treatment and possible side effects. Keep a positive attitude, concentrate on what she can do and enjoy, not on what she can't do. Stay as active as comfortably possible, exercise is good for CHFers.
If your mom is overweight, encourage her to lose weight. On the therory that since I couldn't increase the output of my heart, I could reduce its workload, I lost 35 pounds by dieting and it did more for me than all the drugs I'm taking. It's tough to do but the payoff is huge! Also, I make every attempt to keep abreast of CHF medicine, the advances being made are nothing short of phenomenal, half the drugs I'm on weren't available 5 years ago and many new therapies are in the works. Good luck, Richard. email@example.com
Ben B's April 23 reply to Jon's April 22, 2005 - Hi, I hope you can find a good office job. I always felt that what you did managing the site pretty much matched or exceeded the actual work load at an office job. The main problems likely at office jobs come from dealing with bosses and clients. As for me, in 1997 I worked for a high tech firm. It wasn't really a physically demanding job but the hours were very long and I had to travel a lot. It was there that I was diagnosed with CHF and DCM with an EF of 10 to 15%. I continued to work with that EF for about a year and half, traveling internationally about 6 months out of the year, until my doctor told me it was time to go on disability and that I would never work again. Add to that, my girlfriend dumped me when I got sick. I was brokenhearted but decided to do everything they told me.
In the meantime I slowly improved to about 50% EF and married a lady who loved me despite my severe illness. Jump forward a few years and the same doctor who told me I would never work again told me he could no longer sign my disability forms - I had to get a job. I went on a job search and landed two offers - one for another traveling engineer job in a high stress business and one for a government engineer job at significantly less pay. I took the government job and it was the best decision I ever made.
I know I couldn't work a physical job (actually, I probably never could have worked one very well) and I know I can't take stress. I know I have been very lucky but it can happen. The main problem I have now is that I have lost my drive to diet and exercise, so I have put on weight and slowed down with exercise. I am determined to get back on track because I know I'll be right back where I was if I don't change. Best of luck to everyone. firstname.lastname@example.org
Jon's April 23 reply to Ben B's April 23, 2005 - Hi Ben, Yep, I have been carefully choosing where to apply. The best opportunity to date, for which I interviewed twice this week would be a sit-down, no travel, no weekends, and very little overtime job that would include working on the department's Internet and intranet sites as well as reports, brochures and making a lot of travel and meeting arrangements. I have no idea if I will land this one but hope so. It's at a hospital in a department often working directly with doctors so my knowledge of medical terminology would help a lot. I am spending my spare time learning the ins and outs I don't already know of MS Office. Next week I am imposing on people I know who will show me how to operate similar office equipment and phone systems on their lunch breaks so I don't walk into such a position completely cold. Jon.
Norma L's April 23 reply to Jon's April 22, 2005 - Hi Jon, I have great sympathy for you, I am older, I know. My EF is 55%, at least it was 1-1/2 years ago and I generally feel great. However I find I cannot do the things I used to do, such as work in my flower beds, hauling stone from here to there, bending, weeding, sweeping, doing the wash, etc. I get tired much quicker. I don't know if it is my CHF worsening or age, I will ask my doctor in July! I pray you find that job you can do, God has one out there for you! Or, He can supply all of your needs in another way! email@example.com
Lee H, April 24, 2005 - Hi Contributors to CHF all (mimicking Brit Hume's opener line with his journalist panel), First, to clear conscience I have tried to make Visa donations twice and can't seem to. Jon, any help there would be mucho appreciated. I wanted to contribute simply because so many things were clarified by your fine efforts. Now to le problemo if anyone can offer a take.
My history is an asymptomatic heart attack at age 46 (same age as father's first one) resulting in major muscle damage. I had a 4-way CABG two years later in 1991 on the same day the first Gulf War started. By 2002 all my vein bypasses had shut down (pulmonary graft as good as first day it was grafted) and I had a minor heart attack resulting in some, but not extensive, additional muscle damage. It seems to me that 7 to 9 years was average life of vein grafts. An MRI detected significant peripheral arterial growth which is why I can write this today, I suppose.
In 2003 I had 2 episodes of CHF and now have an ICD/pacemaker. Currently, I am monitored through Heart Partners on a daily weight basis. They have nurse practitioners on call 24/7 and they will issue alerts to my cardiologist when necessary (there were 2 recent large weight swings over just a few days).
My problemo though, may have nothing to do with the above. For 8 to 12 months now I have been feeling lousy with a bloated feeling, lightheadedness, lie down signals all day long yet naps give no relief, limited relief with a full night's sleep. I have no breathing problems, night or day. I have limited activity tolerance and am easily winded after a block of slow walking but this feeling of being sick all day long is really wearing thin because its source is unknown. My bowels are erratic with loss of appetite, sudden fainting feeling when hunger truly calls. My cardiologist has decent reason to suspect it's not my heart or meds (there hasn't been much change in years). Recently he did a full chemical makeup (bunch of blood tests for abnormal chemistry) and sonic abdominal test but everything was normal so he does not believe an endocrinologist will be helpful and hinted at maybe it being a GI situation.
My major problem is deciding what type of specialist to see. If anyone has any thoughts, what specialist doctor would most likely be able to investigate the many conflicting symptoms and diverse physical detriments going on and come to a reasonable judgment on how to proceed? To add to it all I had major surgery last October (2004) for chronic sinusitus which was also making me feel lousy. I'm not sure if that problem still lingers but my ear-nose-throat doctor says it's healed very well. Thanks, Lee.
And Jon, if you could pass on the Visa donation info I'd be grateful. firstname.lastname@example.org
Jon's April 24 reply to Lee H's April 24, 2005 - Hi Lee, I just donated a dollar using my Visa to check the system and it worked. Can you tell me what specifically did not work for you? Also, is anyone else having trouble? It might explain the serious drop in donations lately. Thanks, Jon.
Christine A's April 24 reply to Susan A's April 23, 2005 - Hi, I had a very similar situation with my position. My employer slowly took away responsibilities until I decided it was time to take my doctor's long-time recommendation to go on disability. It is very difficult some days to not be able to go to work. I really loved my job. However, I am trying to find other things to keep me busy where I don't have to make specific time commitments. That way, I can do it when I choose and when I feel okay. I have also kept in touch with my coworkers. A bunch of us get together regularly. That helps.
Good luck to you. I hope things get better for you at your position. Like I tell everyone, I would gladly give back every penny of my disability to feel better and be able to work again. By the way, I just found out a couple of weeks ago that my Social Security disability was approved. Yea! Now I'm just waiting for the first check. email@example.com
Jacky B's April 24 reply to Jon's April 22, 2005 - Hi Jon, I'm sorry you found the job too much but very happy that you could recognize this and quit. I hope you find a job you enjoy and that does not tax you physically. Your exercise regime sounds wonderful.
I find the treadmill tires me much more than the resistance machines. I am fine when actually working out but the rest of the day is shot so I limit my time to 30 to 45 minutes three times a week. I keep telling myself something is better than nothing! Also, like Norma, I wonder if this is how being seventy feels or is it the heart failure? I am not doing very well at the moment, mostly fatigue, so I keep thinking maybe I am just lazy! Are the donations anywhere near helping your financial situation? Jacky. firstname.lastname@example.org
Jon's April 24 reply to Jacky B's April 24, 2005 - Hi Jacky, My exercise routine didn't start out so extravagant, believe me. <g> I started very slowly and took a long time to build up steam. As CHFers, we really have to tailor our exercise programs to our own individual situations.
Donations have saved my hide so far this year. They sort of disappeared recently probably largely because of PayPal's technical problems (I hope). Thanks to everyone who has donated! :-) Jon.
James N, April 24, 2005 - Hello everyone, I am looking for some contacts; specifically, others who have BiV pacers and are on exercise programs that include weight training and more than just the typical 30 minutes a day the cardiologists recommend. I would like to hear about your experiences with the limitations on your workout regimen, as imposed by the pacer and associated surgery. I will of course be speaking with my EC and cardio docs about this as well, but I want some firsthand experiences. Thanks. email@example.com
James N's April 24 reply to Jon's April 22, 2005 - Hi, One thing I learned rather early on in this new life is that I can no longer function in the formal 9 to 5 grinder. All my skills are geared toward high-stress jobs. An 8-hour day isn't even a possibility. Previously I ran a typical 18-hour workday and occasionally ran with more. To say the least, this has made the potential of traditional work very improbable. How do you explain to an employer that you just need to stop working and rest for a couple of hours when you wear out? Or that you may have to take a day or two to recuperate from an unexpected downturn in your strength?
Even more, I don't know that I could ever be happy in a job that would allow me such leeway or make the amount of money necessary to offset other expenses. I know my limits and I live within, to just a bit outside, them. :-) I know better than to push myself too far because I know the consequences.
As such, my wife and I decided that she would work and I would stay home with the kids, manage a few entrepreneurial activities (including a small computer business) and we'd build our millions a little later down the line than originally planned. It's been tough - real tough. Anyone who talks with me off-board knows how hard things have been for us. It's also stressful and sometimes a little unpleasant.
In the end though, we have to make a choice. The choice for me was simple. I will do everything necessary to ensure that my children will have a father and a stable family while they grow up. If that means we have less money, then so be it. If that means we don't always buy the latest and greatest, newest and coolest, then so be it. Our house is one filled with laughter, happiness, and love. That's what my kids need and that's my gift to them as well as to my wife. That's also all that matters. firstname.lastname@example.org
Linda O, April 24, 2005 - Hi everyone, I was diagnosed with CHF two years ago. My ejection fraction at that time was 26% and it is now 20 to 25%. I am looking for a CHF specialist in the Chico, Marysville, California area. Does anyone know of a good one? The cardiologist I have been seeing never asks me any questions except how have I been feeling. Can anyone out there help me? email@example.com
Gary L, April 25, 2005 - Hi, I am not sure if I have the beginnings of CHF or not. I can exercise fine with no breath shortage and no apparent build up of fluid in abdomen or ankles. I generally feel fine but when I lie down at night to go to sleep, my breathing becomes shorter and I feel generally breathless. This prevents my sleep for a long time. I can sleep fine when sitting in a chair or when propped up with a few pillows. Is it possible to have this one symptom with CHF and no other?
Maybe I am just over-panicking and the anxiety is taking over, making my breathing shallow. Could this be a very early stage of CHF (and possibly reversible)? Could this be a symptom of any other illness? I am male, age 44, 5' 8" tall and about 2 stone overweight at 13.5 stone. I realise I need to lose weight. I do not smoke and drink 20 to 30 units per week. I know I should visit a doctor, maybe I am just putting off the inevitable. Is anyone in a similar position to me? firstname.lastname@example.org
Jon's note: This may be something else entirely but yes, it is quite possible to have only one heart failure symptom for quite awhile after cardiomyopathy begins.
Sandy N's April 25 reply to Joseph S' April 17, 2005 - Hi Joseph, Everything will fall into place as the months go on. CHF can scare the heck out of you - it did me until I found Jon's place and found out that once the panic settled, I was able to get help from many places. You're on the right track and I wish you much luck. email@example.com
Cathy D's April 25 reply to James N's April 24, 2005 - Hi, My husband is also an hard-driving executive used to managing people and paper, and working with attorneys all day long. His job is very stressful and since his bout with CHF and sarcoidosis he simply cannot work that way. It has taken him a year to build up to 5 hours a day and then he is so exhausted all he does is rest at home. He wants to work full-time but it is slowly dawning on him that his old life is never coming back. He does not have the concentration or the energy to work like he did. Consequently, his employer has given his job to someone else and put him on "special projects", a road down which few return.
Thankfully, as a registered nurse I can make enough money to support us, but the life style change has been stressful. He loves the kids but he does not like child care. He doesn't have the energy for the noise, the errands, lessons, ball games and scout meetings. I work mostly weekends so I can manage the kids' stuff during the week, do the cooking, shopping, cleaning, bill-paying and everything else. I wish we had more fun time on the weekends, to go driving or camping, and more me time.
I appreciate what my husband can do, as I'm sure your wife does. Hopefully, things will change for the better in the future. Change is so difficult. firstname.lastname@example.org
Scott Brown's April 25 reply to Jon's April 22, 2005 - Hi Jon, I'm glad to hear you were able to go back to work, if only for a short time. I have no doubt you will be successful in landing an office job which will work better with your CHF. Have you ever thought about an Information Technology (IT) job? You are very adept at running this site. It seems like you have a lot of good technical skills. An IT Help Desk type role would be a good entry level position, as long as you don't mind dealing with people. Best of luck with the search! Scott Brown. email@example.com
Gena C, April 25, 2005 - Hi all, I am new here with questions. My dh was recently diagnosed with CHF. He was feeling full, like he was gassy, for about 3 weeks. I noticed him breathing heavily and he said it was because he was so full. Finally he decided to go to the doc (our family doctor.) The doc ordered an abdominal x-ray to check for any blockages since he felt so full and his abdomen was pretty distended as well. When we got to the doc my dh's blood pressure was 210/140. They were more concerned with his blood pressure than the gas. They put him on Micardis. A few days later we went back to the doc and his blood pressure was 250/150. The nurse noticed as he got on the table that he was out of breath and we told them yeah he's been like that because he is so full all the time. He was also waking up at night full and short of breath. They then ordered a chest x-ray and found an enlarged heart, fluid around the heart and fluid in the lungs. They put him on Micardis HCT and scheduled an echocardiagram.
The echo showed an ejection fraction of 15%, three of four valves were leaking, and he had an enlarged heart but I don't know the numbers. We were then sent to a cardiologist who ordered a cath, which showed no clogged arteries or blockages of any kind. The cardiologist put him on Coreg 6.25mg twice a day. We go back in a few weeks.
Now, my questions. Since then my dh feels great. He works 8 to 10 hrs a day on his job and then comes home and works another 3 or 4 hours. He is a welder so he does very manual work. The only thing he isn't doing that he was doing is lifting. If it's something very heavy he has someone else lift it. He can push a mower for hours and doesn't even get winded. If his ejection fracture is so low how can he do so much? He has no side effects from the Coreg. The only thing he notices is when it's almost time to take his next one, he gets tense.
Could his ejection fracture have been so low because of the fluid and now that the fluid is gone it is back to near-normal? He's lost about 30 pounds. He said he hasn't felt this good in several years. He can take full breaths without wheezing. He hasn't been able to do that either. He did quit smoking and drinking but he was never a heavy smoker. A pack would last him 3 to 5 days but he would drink about a six-pack of beer a night. Sorry for the long post but I'm lost. Can a person with CHF feel this good? Thanks, Gena. firstname.lastname@example.org
Jon's note: Please define "dh". Thanks.
Jon's April 25 reply to Gena C's April 25, 2005 - Hi Gena, I did. However, it was partly because I had felt so bad for so long before being properly diagnosed that the CHF meds and getting rid of the fluid just made me feel so much "better" that I thought I felt "normal." My EF was 13%. I was mowing the yard and trimming trees. It caught up with me over time. Believe me when I say that stopping the cigarettes and beer is also contributing to his sense of well being. I also smoked and drank pre-CHF.
I suggest that your (whatever a dh is) stick to no more than 8 hours a day on the job and take it easy after work, at least until his treatment has a chance to really work, which usually takes close to a year. Jon.
Pam S, April 25, 2005 - Hi Jon, I just wanted to remind your readers who work to be sure to take advantage of Matching Donations (if they're offered). My company has the form online. As soon as I put in the CHFpatients ID number, the fields were populated. All I had to do was fill in the match amount and the date I wrote the check.
I pray that you find a job that fits your needs. Honestly, you are so smart I think you're talents are wasted in a physical labor job. The hospital job sounds very interesting. Fingers crossed! email@example.com
Jon's note: We were thrilled to receive our first matching donations from employers recently. If I were really that smart, I'd have this site making enough money to pay our bills by now! <g>
Terry P, April 25, 2005 - Hi everyone, I'm waiting for a heart transplant and currently am hooked up to a VAD. Here in British Columbia I'm a 3 on scale (1 to 4) which means my chances for a transplant anytime soon are slim. I was wondering how people with VADs in the US are rated. Just curious. Thanks. firstname.lastname@example.org
Jennifer G's April 26 reply to Jon's April 22, 2005 - Hi Jon, The printing industry is one of the most stressful that I know, both physically and mentally. I spent several years as a prepress operator. As newer technology became available I found that printing companies, both large and small, tended to get by with as few employees as possible, while shortening deadlines. I spent 2 months (December and January) as the only desktop person as a small printing company. I left that printing company to return to a job that I found to be boring, but a lot less stressful.
Shortly after returning to my old job, I landed in the hospital with pneumonia (later determined to be pulmonary edema). I was so sick and run down. I had worked overtime, then straight through the weekend, then late on Monday. It was no kind of life and there was no kind of teamwork.
This all leads me to an idea I had. Printing companies are looking for ways to do online marketing and to receive orders and issue quotes online, but they don't really know how to set that up and maintain it. With more work coming in, they're able to price their printing more competitively. Have you thought about contacting printers in your area to see if they have an online store, so to speak? It would be great if it were set up by someone who understood printing, color separation and paper stocks; Set-up and maintaining the site may also be designed as a work-from-home job. I've also found that people will set up an independent printing site like this, then broker the jobs to printing companies. I don't know if that interests you, but it seems to be the way the industry is going, just some thoughts.
I am doing much better on Coreg. I take 6.25mg twice per day and I have a check-up later this afternoon. I would encourage anyone who feels they are dragging because of Coreg to give it some time. It took my body a good little while to adjust. If my cardiologist increases my dose today, I may have to go through an adjustment phase again (bummer!) but it will be worth it in the end if I stick to it. Jennifer. email@example.com
Jon's April 26 reply to Jennifer G's April 26, 2005 - Hi Jennifer, That's a really good idea. However, I was running a base press at a container print shop where containers were printed, like yogurt and sour cream containers. It's really different and quite difficult to do physically. Because I was a rare combination of native intelligence and industrial machinery experience, they kept rapidly moving me to the more difficult machines until at week seven, I was doing a job that really required an experienced person to do. They didn't know I was tired and I didn't enlighten them. Why not? It was the only place in 10 years I was accepted without anyone knowing about my heart failure - it was nice. :-) Jon.
Vicki S, April 26, 2005 - Hi Jon, I haven't posted in a long time and would like your personal opinion on taking Elavil (small dosage of 25mg) before bedtime to help with sleep. I continue year after year to have ANA titer tests that indicate the presence of an autoimmune disease such as Lupus. The rheumatologist thinks maybe I have fibromyalgia instead. Anyway, I was diagnosed with cardiomyopathy 3 years ago and am on the standard treatment for that. My heart seems to be doing okay. I have read that tricyclic antidepressants are not to be taken by patients with CHF, but the rheumatologist said that the dosage was so low that it should not affect my heart. What is your opinion? The chronic lack of sleep is very detrimental to my quality of life. Thanks, Vicki. firstname.lastname@example.org
Jon's April 26 reply to Vicki S' April 26, 2005 - Hi Vicki, Personally, I think Elavil leaves too much after-effect (hang-over) the next day for CHFers. This is probably not true for everyone, though. I fully agree that lack of sleep is deadly to anyone with heart failure, and is very bad even for healthy people. So try low-dose something if over-the-counter products like Tylenol PM or Benadryl don't get the job done. Just go with low doses as you say and watch very carefully for side effects. If one doesn't work, take a week off and try something else, again, at low dose. Jon.
Tunny G, April 26, 2005 - Hi Everyone, I am scheduled to have an ICD implanted on May 10th, mainly due to an ejection fraction of around 10%. I thought about this for awhile and decided to go ahead with it. I looked at side effects, constantly read Jon's site which is very informative, and talked with people who have an ICD. Looking at this as a security measure, I feel it would be beneficial if and when it needs to be.
I would like a little input from someone who has had this type surgery, especially concerning the things that may be surprising in such a way as to the inconvenience after surgery that possibly no one discusses.
Isn't this site the most inspiring, informative, etc? It leaves nothing unturned. Thanks to you Jon, may God continue to bless you. email@example.com
Jacky B, April 26, 2005 - Hi, Can someone please translate for me? A "PR interval of 178 ms" is equivalent to what, as the measurements shown on most web sites. That sounds peculiar but I hope you know what I mean! firstname.lastname@example.org
Jon's April 26 reply to Jacky B's April 26, 2005 - Hi Jacky, Take a look at chfpatients.com/implants/pacemakers.htm#patient_selection. The graphic on the right shows an EKG. Notice the letters attached to the "spikes." The time it takes for the EKG to record all the electrical activity between the P and the R spikes is the PR interval. "Ms" means milliseconds, or thousandths of a second. I believe a "normal" PR interval ranges between roughly 120 and 200 ms. Someone please correct me if that is wrong - I am not an EKG expert. Jon.
Lowell P's April 26 reply to Jon's April 25, 2005 - Hi Jon, I think DH means Dear Husband. Just a guess. Lowell. Lpepper3m@aol.com
Jon's note: Thanks Lowell. Online "slang" is impossible for me to keep up with.
Jon, April 27, 2005 - Hi everyone, I will do posts tomorrow morning sometime. My 17 year old truck has come as close to actual death as I can allow so I have spent the past 3 days selecting and financing a replacement. This has not exactly helped my financial situation as it was unexpected. On the up side, the replacement that God provided is literally the best deal I have ever seen on a used vehicle. I am just too tired tonight to make it through everything. I have all day tomorrow to work online since I don't pick up the new truck until late afternoon and I don't dare drive my old one any more than absolutely necessary. Thanks for your patience. Jon.
Patricia P, April 28, 2005 - Hi all, I would just like to comment on working with CHF. I have a job that keeps me walking all day long. Year before last, with an EF of 25%, I could barely make it through each day (those that I was able to work). Last year with an EF of 35%, I worked my full-time job and three part-time jobs and had very few problems. This year with an EF of 40%, I am holding one full-time job and one part-time (6 hours per week) and am extremely tired, but am holding my own on most days. I have missed work for a viral infection and pneumonia, but none for CHF. I am so tired that some days when I get home I don't make it past the sofa. I have decided that after this this summer, I will slow down a lot, so hopefully I won't be as tired. It is much more difficult for me in the summer months than it is in winter. Jon, I wish you luck in finding just the right job for you. I admire you for knowing when to say no and having the courage to stick to your decision. Patricia P. email@example.com
Sandy N's April 28 reply to Tunny G's April 26, 2005 - Hi Tunny, I had my ICD/pacemaker implanted this past December. I found it to be just as scary as you are. Now I feel it was the best thing I have done to help my CHF. I went into the hospital, was prepped, wheeled into the cath lab and after only about 2 hours was back in ICU. I stayed in ICU for about 24 hours, then went home. I had very little pain and was only uncomfortable at the incision site.
It took me about two weeks to get used to having this little metal thing in my chest wall. I used a sling on my left arm for the first two weeks to keep my arm from moving around. This allows the leads to adhere in your heart. My doctor did give me some pain pills and I used them the first few days. I have had only one incident as it is called. I heard myself beeping while I stood in front of my stereo! I did not know about the magnetic field in speakers! It's been 4 months now and I'm pleased to say that I have not been zapped. Just having the knowledge of a bit of security is so reassuring, and I have so much more energy and can breathe easier. It has brought me comfort in my every day life.
I only have one regret! That is that ICDs were not around back in 1986 when my brother so needed one. He has been gone for 19 years now. Best of luck to you! firstname.lastname@example.org
Dee E, April 28, 2005 - Hi, Has anyone heard of liver transplants for CHF patients? I posted here numerous times, this site I have found to provide more information about CHF than any other ten sites combined. Here is our situation.
My dad has right-sided CHF which for him went undiagnosed by his cardiologist for years. Since he was diagnosed, there was no urgency from the doctors to worry about liver function problems down the road. He saw numerous docs and his condition worsened since he was diagnosed in December of 2001. Now here we are a little over 3 years later and he has the shakes, confusion, his liver blood work is off the charts and he sleeps all day now.
At no time did any doctor warn us that right-sided heart failure can cause liver cirrhosis and now it might be too late. We are going in for a liver biopsy to see how bad it is, but I think I know from his response to 2 weeks of meds, which has seen him deteriorate further. So my question is, has anyone heard of liver transplants for CHF patients? Is that just a ridiculous dream? God bless, Dale. email@example.com
Stephanie H's April 28 reply to Tunny G's April 26, 2005 - Hi Tunny, I had my ICD implanted in December of 2004. I have IDCM with an ejection fraction of 20%, and ventricular tachycardia. I don't think there are any real surprising effects from this type of surgery, assuming there are no complications during the surgery.
The hardest thing for me post-procedure was the restricted use of the left arm. You never realize how much you use it until you can't! It is also quite uncomfortable sleeping on your left side or stomach for awhile. The oddest thing post-procedure is that there is no denying that you have a hunk of metal in your chest. It's not that it hurts or is uncomfortable, but that you know it's there! Good luck with your surgery. firstname.lastname@example.org
Mary Anne, April 28, 2005 - Hi everyone, I saw my cardiologist today. We agreed to give Coreg another try, at 3.25mg twice a day for 2 weeks, then check my blood pressure. Also, I am being evaluated for an ICD using echo and exercise stress test. I am already qualified because of my present situation but I guess the insurance company needs to be convinced again. My pharmacist suggested that I start with one dose per day of 3.25mg Coreg while my doctor says twice a day. Any thoughts on that? I took Coreg quite awhile ago but didn't feel good, so I went back on Toprol-XL. My doctor says Coreg is the best drug they have for treatment of CHF along with an ARB so I will give it another shot. Wish me luck. email@example.com
Jon's April 28 reply to Mary Anne's April 28, 2005 - Hi Mary Anne, If you take Coreg once a day, you will be spiking your blood levels of the drug up and down every day. This does not allow your body to become accustomed to the drug's effects so it is in my view a bad idea. Don't forget that Toprol-XL is FDA-approved for treating heart failure and is very effective at it.
Toprol-XL and Coreg have not been tested head-to-head at target doses so doctors are stretching the results of COMET way too far to state for a fact that Coreg is a lot better. I actually asked my mom's doctor to put her on Toprol-XL when he wanted her on Coreg for heart failure. Why? Toprol-XL costs a lot less, does not drop blood pressure as far, only has to be taken once a day, and is very effective for treating heart failure.
It's an individual decision every time but don't feel bad or deprived if Coreg is not for you - take Toprol-XL with confidence. Jon.
M Wilson, April 28, 2005 - Hello, I am a mother of 4. I am age 28 and have severe cardiomyopathy and congestive heart failure. I have lived with this for 7 years now. I almost died twice but was brought back. I have been told I need a transplant. I have had quite a hard go at life and I get real scared at times. I have already had one open heart surgery, 2 pacemakers placed and 4 C-sections. I need hernia surgery on my belly button and found out 04-26-2005 that I have a cyst on my liver. I have cancerous cells on my cervix and a bad case of kidney stones.
I did complete an acorn study that I was in last month where I had to be in the study for 5 years, which I finally completed and am proud of myself but more than that I thank the Lord. My doctors still can't believe I am walking around with an ejection fraction of only 13 - I would say that's a pretty big miracle.
I'm here to chat if anyone needs an extra hand, mine is very openly available. If you need a shoulder to cry on mine is there. If you need a friend, if you need a miracle, look toward the only one who can really make that happen for you. That is our Father above. I don't want to preach but I will say that I am living proof that He does exist because please believe me when I tell you if it weren't for Him I simply would not exist as sure as were talking here right now. God bless us all and our doctors as well. Feel free to chat with me any time. Thank all of you for being here for me as well. firstname.lastname@example.org
Susan L, April 28, 2005 - Hi All, It is nice to know there is a such place I can go that everyone here share something similar. I was diagnosed with CHF for awhile. I feel tired more and more frequently. I couldn't even finish my work sometimes because of that. I don't know how long this will last and whether I am getting better or worse. I am wondering how you deal with this situation other than quitting the job. Are there other choices? Thanks a lot. Susan. email@example.com
Jon's note: Hi Susan, Can you say what caused your heart failure, what your test results showed, what meds you take, whether you are treated by a heart failure specialist, etc?
Sean M, April 28, 2005 - Hi, I am interested in feedback regarding my mother's current condition with CHF. She was diagnosed about 7 years ago and her health has declined markedly over the last 6 to 8 months. She has experienced extreme fatigue, loss of apetite, sleep loss and as a result of all of these dramatic weight loss. In early March I went to visit her in Arizona to visit her doctors and try to help her understand what was going on. Needless to say, I was less than impressed with her primary care physician. Her previous cardiologist didn't sit well with her so we found a new one.
Before we could meet with him I had to take her to the emergency room. She was suffering from severe dehydration (common with her over the last few years) and exhaustion. The cardiologist assigned to her in the hospital prescribed digoxin, furosemide and several other medications for blood pressure etc,..., because her blood pressure was very high in the hospital. She was released a week later and was making small improvements each day for the first week and a half.
She went to the cardiologist again and he adjusted her medications. Within 2 to 3 days her improvement stopped and she began to decline. Within a week she was back in the hospital again with breathing problems despite oxygen use at home and was told that there wasn't anything that could be done. With that diagnosis, she was flown from the hospital in Arizona to my home in New Jersey for in-home hospice care.
While here she has improved slightly each day. While very alert and able to go for most of the day without oxygen, her body is still weak and she is not ambulatory. According to the physicians her EF is 8 to 12%. Currently, her blood pressure is consistently 96/70. While previously making her comfortable for her final days, I am starting to wonder if there is something that can be done to improve her life and prolong her life span (comfortably). Any comments? firstname.lastname@example.org
Lowell P, April 28, 2005 - Good Morning Jon, I spoke to my doc about my BNP increasing from 650 to 1100 for the past two to three months. I asked him what I could do to bring it down again. It went up after lowering my Lasix from 80mg once a day to 40mg once a day. I now take 40 mg Lasix daily and 2.5 mg Metolozal every other day with the Lasix. He told me they only treat the symptoms and not to be concerned about BNP. If BNP is indicative of pressure in the heart it seems like I should be concerned. I take Lasix, Coreg, Coumadin, metolozal, and potassium. I took enalapril for awhile but did not tolerate it well so it was discontinued. My "doctor" is not a doc but rather a physician's assistant who takes his instructions from the cardiologist. I have only spoken to the cardiologist once very briefly about a year ago. I would feel better if he discussed things with me occasionally. My EF is 28%, blood pressure 125/70, left auricle is slightly enlarged with severe pressure. Left ventricle has an infarct of 25 to 30% in the apex. Previous infarct involves the septum which is almost stationary during contraction. Comments please. Lowell. Lpepper3m@aol.com
Jon's April 28 reply to Lowell P's April 28, 2005 - Hi Lowell, I don't know how many of the suggestions in The Manual you follow so I'll stick to just this post. First, you mention severe pressure in an atrium (upper heart chamber). Why is that? How well do all your heart valves function? Second, your systolic blood pressure is high. Why is that? Are you at target dose on your Coreg? Have you tried an ARB? Third, have you tried Inspra to help control your neurohormonal system better? Finally, how is the blood flow to your heart? Do you have any coronary artery blockages?
On the subject of BNP, as I state on our BNP page, I do not believe it is a very useful tool for "managing" or "reading" heart failure over time. How do you feel? How well do you function physically? How often do you get CHF symptoms and how badly? Numbers can take over a person's concept of their own health and that's a bad thing. They tell one part of your story only, and BNP is only one of many numbers.
If your BNP number means so much, it is telling you that you are in class 4 heart failure right now. Are you? If not, why rely on this test so much since it isn't accurate in your personal situation? Jon.
Charles W, April 28, 2005 - Hi everyone, I was diagnosed with cardiomyopathy, CHF, and an irregular heart beat four years ago. My EF was 25%. The irregular heartbeat was corrected through a surgical procedure. I take Lisinopril and metoprolol and until six months ago, digoxin (Lanoxin). My doc eliminated it (not the same doc by the way, who prescribed it). He thought it was no longer necessary. Two months ago, I developed tingling in my left arm - not numbness, but occasional pins and needles. I know that left arm numbness is frequently an alarming signal of an impending heart attack but as I say, I've had it intermittently for two months. I've also been excessively fatigued. I have a doctor's appointment in two weeks but I wondered if anyone else has suffered these symtoms. Also, I frequently awaken in the nightwith the most vivid dreams and the most outlandish nightmares. Thanks. CRichardW1@aol.com
Susan L's April 29 reply to Jon's April 28, 2005 - Hi Jon, I am 35 and was diagnosed with DCM about 10 years ago. I don't think anyone knows what caused that. I have never worried about it even with an EF around 20% since I felt normal. However, recently I started to feel tired and get edema, the symptoms of CHF. Even my EP doctor was surprised to learn that since my last stress test (last October) wasn't bad at all. I will have an echo done in early May and see a heart failure specialist end of May. I am now on Coreg, Cozaar, Coumadin and spironolactone.
My husband and I are having rigorous discussions these days about whether I should quit my job or not. I know he is worried about me and would like me to relax, not getting too stressed from the work but I don't think staying at home is good either. However I know sometime I just can't work because I can't even walk from one end to the other end of the building.
I would like to know what is your general opinion about working or not, and stress under these conditions. How do we deal with the transition (quitting a job because of health problems is not easy)? Should we let the employer know about my condition? Your opinion means a lot to us. Thanks so much. email@example.com
Mikey S, April 29, 2005 - Hi all, I'm Mikey S and this is my first time writing. I'm 55 years old and I've had CHF for three years. When I went to the hospital because I was unable to breathe, an echo revealed that I had dilated cardiomyopathy and my EF was under 20%. I was started on Lopressor at 100 mg, Vasotec at 5 mg, and digoxin at 250 mcg. After a year and a half my EF improved to 50%, where it is today. I feel that my cardio workouts were mainly responsible for my improvement. My Vo2 max is 41 ml/kg/min. I try to train 6 days per week. For the business portion of my workout, I run either an 8 minute mile, 1-1/2 miles in 13 minutes, 2 miles in 18 min, or 8 min at 6 mph up a 10% hill. I fill in the rest of these workouts with walking at 4.5 mph to reach a total of at least 1/2 hour. My heart rate during these workouts is usually between 165 and 175 bpm, which is a little above my age predicted max for a healthy person.
It has taken me three years to reach these levels. When I first started I could barely run 3 minutes at 5 mph. These workouts are extremely difficult and they don't get any easier with time. In fact, I realize that it was probably quite dangerous for me as I developed my ability to do this and I doubt there are too many people who have tried this path. That being said, I feel quite good and I am continually improving in my well being and my ability to function normally. My goals and hopes are improvement rather than to slow my decline. I'm very interested in hearing if anyone has trained along these lines and what their experiences might have been. firstname.lastname@example.org
Jon's note: You're doing much better than I am. Keep it up if it works. Everyone please remember though, that "target" heart rates are not a good goal for most people with heart failure, especially if you take a beta-blocker! Personally, I don't run and never have - I'm into walking or swimming for cardio training.
Bonnie B, April 29, 2005 - Thank you all for this site, especially Jon! This is the first place I've found where my multitude of questions are addressed. I was diagnosed with heart failure in late October of 2004. My EF was 20% at that time (through echo and cath). In late December, I had another echo and my EF was 30%. I'm taking 3.25 mg Coreg twice a day and 10 mg lisinopril once a day. When increasing my dosage of either, my blood pressure dropped below 90/55 while at the current dose it's fairly stable at 108/65 ranging to 95/60.
Yesterday I had my first MUGA and the technician told me that my EF was 61%! I still feel tired most days, very lethargic, don't sleep well at night, have leg pains at night. When I overdo it physically, I have to hit the couch for a day for each day I've exerted myself. I haven't worked since first being diagnosed and my cardiologist has written a disability excuse for my work as a high school drama and English teacher through the new year.
Why do I still feel pretty much the same even though my EF is normal? Is the medication working even though I'm taking low doses? How and when will I know if I am as recovered as I will be? I can't really talk to either my cardiologist or PCP. Can anyone recommend a Kaiser physician in the Sacramento, California area? email@example.com
Jon's note: I don't know why you can't talk to your cardiologist but never ever rely on a technician's reading of your EF! I have had my EF misread by more than 10% that way, corrected by my CHF doc after he read the echo.
Susan D's April 29 reply to Sean M's April 28, 2005 - Hi Sean, I'm sorry your mother is so ill. I do have a few questions. How old is your mother? Exactly what meds is she on, along with dosages? Have you begun use of the hospice program? I have a family member with CHF who is enrolled with hospice. Please feel free to e-mail me directly if you would like to chat about this experience. Please remember to take care of yourself so that you can care for your mother. It's a very easy thing to forget. firstname.lastname@example.org
Tunny G's April 29 reply to Sandy N's April 26, 2005 - Thanks to you Sandy, for taking the time to answer questions exactly as requested. I am sorry to hear about your brother, possibly doesn't seem to be 19 years ago. I am surprised to hear that you feel the ICD has made you feel better. I am not aware that it could help you in that way. Thanks again for the info. email@example.com
Jon's note: Generally speaking, an ICD doesn't help you feel better. However, a lot of people refer to an ICD/pacemaker combination unit as an ICD. Maybe Sandy has a combination device.
Tunny G's April 29 reply to Stephanie H's April 28, 2005 - Hi Stephanie, Thank you so much for the time you have taken for the input I requested. This is the type of info I was looking for. Hopefully, you as well as I can get our ejection fractions up some, as they are both about the same at 10 to 20%. Thanks again. firstname.lastname@example.org
Chuck F's April 30 reply to Lowell P's April 28, 2005 - Hi Lowell, I think your physician's assistant is right in treating the symptoms but it sounds like he needs a class in provider/patient relationships. A a sudden increase in BNP level should be investigated. When seeing a non-physician health care provider it is standard of practice that when a patient desires to see the collaborating physician (doctor overseeing) that arrangements are made - just ask.
From what I am reading without knowing your whole clinical picture I would immediatley ask why the Lasix was decreased. I would suggest making another appointment and always between appointments write your concerns down and take them in with you and make sure they are all answered to your satisfaction. Don't let them rush you out until you are satisfied. If your appointment time goes over, all they have to do is bill your insurance for a higher CPT code. Good luck. email@example.com
Jon's April 30 reply to Chuck F's April 30, 2005 - Hi Chuck and Lowell, I just want to add a different perspective on drug treatment here. It is absolutely right to use diuretics only to treat symptoms. When you don't have any edema, using a diuretic can make you deathly tired, severely so. Taking them only if you need them also helps prevent diuretic resistance. If used when you do have edema, diuretics can give you lots of extra energy by reducing the load on all your bodily systems. That's why you shouldn't take them if you don't need them. Of course, when you need them, take them! The point is that you have to pay close attention to your body. With your CHF doc, set up some kind of schedule or system that works for you.
Other CHF meds should be used regardless of symptoms, just as absolutely. They do multiple things for you: Reduce symptoms, prevent future CHF episodes and hospitalizations, and prolong life. These are not all symptom-based, so the meds should be continued even when you have no symptoms at all, just as the official treatment guidelines say to do. This includes ACE inhibitors, ARBs, spironolactone or Inspra, and beta-blockers.
I don't mean to be nit-picking but wanted to avoid confusion because this concept is confusing, especially at first. Jon.
Chuck F's April 30 reply to Charles W's April 28, 2005 - Hi Charles, These symptoms are called paresthesia. There are many possible causes. First I would ask if you sleep with your arm under your pillow or head, or if you use that arm repetitively in any manner. Sometimes, the brachial plexus (a complex of nerves in the neck and upper arm area) can cause these symptoms. If you do sleep that way, changing it may help the symptoms go away. What other medicines are you on? Has there ever been any damage to your arm or neck? What surgeries have you had? A pacemaker/defibrillator insertion may cause this sensation if placed too high. Lastly, and something to be concerned with as you are, it might be cardiac in nature. I would bring it up with your health care provider.
You mention vivid dreams or nightmares. Did these start since your surgery? Occasionally people with heart surgery develop this and it could also be related to your medication. again I would bring these up. Good luck. firstname.lastname@example.org
Lowell P's April 30 reply to Jon's April 29, 2005 - Hi Jon, I read the post of the man who can run a mile and a half etc,..., in 13 minutes. I think this is good and would like to be able to do that if I could. I have been receiving a lot of criticism lately however, for trying to walk too far. I have been walking three and sometimes four miles, four and five times per week. Maybe my critics are right. If my heart is weakened, am I putting too much strain on it? I have never had a Vo2max test but may ask for it.
I can relate to people who can't talk to their doctors. Many of us can't. That's why you're so popular, Jon. We can ask questions without feeling that we are stretching our time with the doc and without getting superficial answers. We can also be anonymous. By the way, my doc says 120/70 is good blood pressure even for a CHFer. I don't believe him but how can I argue with him? Lowell in Arizona. Lpepper3m@aol.com
Jon's April 30 reply to Lowell P's April 30, 2005 - Hi Lowell, I'd like to be able to run a mile or two in decent time also, but I don't think it would be good for me. I have arthritis in both knees as well as heart failure. ;-) Regarding walking, the main problem with walking is that often CHFers try to do too much too fast without the " building up to it" process that gives safe benefits. If you started pretty mild and worked up to your current level, I don't see a problem with it, as long as you aren't suffering from "fatigue hangover" one to three days afterward, and as long as your CHF doesn't flare up from it.
Overall, walking is an excellent aerobic exercise for a CHFer and is my exercise of choice. Since I have not yet landed another local job, I now walk 30 minutes each day at 4+ miles per hour.
I worry about people who can't or don't talk to their doctors. My concern is pretty simple. If you don't feel that you can talk honestly with your doctor and get useful, honest replies from him, how are you going to get good care when your life depends on it? He's not going to change when your health and life are in danger so vital information will almost certainly not get to you or from you to him. In this case, you really need to get a better doctor now before an even more critical situation arises in your health care. Jon.
Kooky F, April 30, 2005 - Hi everyone, I would value and would be grateful for your replies. I am not sure what is going on any longer. My symptoms are: For a few weeks sometimes lasting for a few months, I am so exhausted. This is triggered by breathlessness and palpitations. Even taking a bath would take over two hours, having to pause after each movement. I am mostly bedbound during these episodes. I also have chest pains, palpitations and sometimes the fingernails in my left hand go blue. Oxygen saturation when measured once, had gone down to 92%. The doc on duty in the hospital emergency room had no idea what was going on. The cardiologist says he does not know either.
A lung function test showed alkalosis and hypeventilation, but nothing further was advised. It seems that I may have angina but I refused an angiogram (cath). The symptoms are typical and three areas of calcium were found, but this does not exclude nor does it necessarily include blockage. EKGs have shown abnormality, T-Wave flattenings and abherrant tachycardias, but the cardiologist said perhaps there was an electrical device causing interference, to which I replied there was not.
The cardiologist had two echos performed but these were done during well periods, not during attacks as described above. My EF was about 50%, with poor heart muscle movement (hypokinesia) in the left lower atrim. Echo also showed left ventricular dysfunction. A cardiac MRI showed good heart function. Holter monitor showed abherrant tachycardia and I now await a loop implant which will be downloaded on a computer every so often to look at the types of tachycardia so a proper diagnosis can be made.
I saw the cardiologist last week and he told me there was nothing wrong with my heart, and that his opinion was based on the cardiac MRI, but I asked about the clinical history and the two echos which showed left ventricular dysfunction with an EF of 50% and hypokinesia, bearing in mind that these were performed when I was not suffering from these episodes, but felt rather well.
I think the clinical symptoms of breathlessness and palpitations upon the slightest physical movement and extreme exhaustion causing me to be bedbound for many weeks each time, then getting better again, shows there is dysfunction somehow lasting for a few weeks each time. These are worse during the winter months and hot months. Also, the chest pains and nails going blue mean something. A recent blood test showed very low sodium, calcium and other deficiencies.
The echos were done when I was not suffering from these symptoms but was simply very tired but still avoided stairs, walking uphill, because this might trigger an angina attack. I heard of someone who had similar symptoms, was told there was nothing wrong with her heart, but that when she had an echo done during these episodes, it was shown that there was dysfunction occuring during that time. Also, these echos and the MRI depended on the competence of the interpretation of the radiographer.
Why is it that the earlier echo shows a difference in the aortic root dia of 3.66 cm now 3.7 cm and LA dimension was 2.76 now 4.0 cm? The cardiologist said that there often fractional differences in interpretation of dimension but still, if the LA was 2.76 and is now 4, this is not fractional.
Is it possible to be so ill for such extended period of time with CHF and then feel fairly well again? Is it important for me to have an echo while being so ill? What if the echo shows a fairly good EF? The cardiologist said that there is no heart murmur, no cracklings, my liver is normal and the vein in my neck is normal. So according to the MRI results, there is nothing wrong with me. However, the cardiologist is excluding the echos which show hypokinesia of the lower left atrim, LV dysfunction, as well as my arrhythmias, tiredness, exhaustion and breathlessness.
I can't simply go to another cardiologist at this point, but hope that during the next episode of breahtlessness that something will show on the echo. My concern is if it is possible to have CHF but nothing shows on an echo? Is it possible to have breathlessness and palpitations triggered by minimal movements, be weak and exhausted with CHF, be bedbound for a few weeks, but then be fairly well again and up and about till the next episode?
Please accept my aplogies for such a long message but I am not sure who to ask and who to trust. Being in the UK with the social health system, doctors now are in the habit of minimising symptoms and misdiagnosing is commonplace because of poorly trained doctors and radiographers. Many thanks, and I look forward to your replies. email@example.com
Sandy N's April 30 reply to Tunny G's April 29, 2005 - Hi there, Yes, I have a combination ICD/pacemaker. My doctor and the rep from Guidant both told me in the beginning that the pacemaker part of the device would make me feel a bit better. It adjusts the left side of my heart to beat in time (synchrony) with the right side. This enables me to have more energy and also to breathe much better. It also has the added security of an ICD. I feel so much better since having this combination device implanted. I no longer have the need to lie down all day and it's wonderful. This url is for some Guidant information: www.guidant.com/webapp/emarketing/compass/comp.jsp?lev1=living&lev2=hf_index. firstname.lastname@example.org
Jon's April 30 reply to Susan L's April 29, 2005 - Hi Susan, The decision to work or not is partly physical, partly mental and partly emotional so it is different for each person. You should probably read the section of our Disability page at chfpatients.com/ssd.htm#canworkd. This is a summary of how I look at the issue. I hope it helps. Jon.
Helen L, April 30, 2005 - Hi Jon, Your site is wonderful and has given me hope to keep going. I live in Australia. For six months I have had rales (crackles on inspiration) at night, a short productive morning cough, swollen ankles, numbness coming and going in arms and hands, chest pains and SOB on exertion and sometimes at rest. Six weeks ago I had terrible chest pains and went to a hospital ER. The ER doctor told me I probably had CHF. They told me I had to have an echo and do a treadmill test, which I did. They said the EKG, echo and stress tests were normal. That night I had shocking chest pains and have had them ever since.
PCPs tell me it is just anxiety or asthma. I've had 2 normal spirometry tests. This week I had terrible chest pains again and went to a different hospital. The first EKG was apparently not right and they admitted me, saying I probably had CAD and must have a cath and that I could die at any moment. They refused to discuss CHF with me and said an echo was not a suitable test. I refused the cath because they refused to discuss my test results, symptoms and CHF concerns with me. Has anyone with CHF had symptoms similar to mine? I am now on a 5-week wait list to see a cardiologist. email@example.com
Jon's note: I know this sounds simple but try asking a PCP for one sublingual nitro prescription. Next time you have chest pain, take one per his instructions. If your chest pain quickly improves from the nitro, you probably should consider a cath. I am not a doctor.
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