René 11-2 seeking information
Rosemarie 11-4 seek others in the same boat
Carole K 11-4 seek others with these feelings/problems
Jon's 11-4 reply to Carole K's 11-4 nausea & feeling bad all over
Carole K's 11-5 reply to Jon's 11-4 cycles & more
Lorraine 11-5 our experience
Myrtle C's 11-6 reply to Lorraine's 11-5 preparing for the worst
Sandy's 11-6 reply to Lorraine's 11-5 welcome!
Debra K 11-6 how do you manage it? & more
Norma 11-6 my dad died, thank you for your help
Lorraine's 11-7 reply to Myrtle C's 11-6 getting by, thanks, CoQ10 question
Lorraine's 11-7 reply to Sandy's 11-6 thank you
Jean Ann Hudson 11-8 seek experiences & opinions on CHF specialists
Lorraine's 11-9 reply to Jean Ann Hudson's 11-8 specialists
Susan B 11-9 heart rhythm, cardioversion questions
Carole K 11-11 deep & shuddering breathing question
Rosemarie 11-11 can you explain this x-ray report?
Tom 11-12 medical study ongoing
Lois B 11-13 what is atypical chest pain?
Jon's 11-13 reply to Lois B's 11-13 atypical
Natalie K's 11-16 reply to Debra K's 11-6 acupuncture for fibromyalgia
Sheryl LaCoursiere 11-18 apology for using e-mail addresses & more
Carole K 11-18 seek liver trouble experiences
Lorraine's 11-18 reply to Carole K's 11-18 our liver trouble experience
Scott Brown's 11-19 reply to Carole K's 11-18 liver trouble experience
Scott Brown 11-19 prayer request & seek advice
Scott Brown's 11-19 reply to Lois B's 11-13 end-stage experience, devices may help & more
Scott Brown's 11-19 reply to Susan B's 11-9 cardioversion experience & more
Leigh J 11-9 seek similar experiences & advice
Scott Brown's 11-19 reply to Carole K's 11-5 lack of appetite experience & more
Dawn B's 11-19 reply to Scott Brown's 11-19 my prayers go out for you
Kelly S' 11-20 reply to Scott Brown's 11-19 hard questions
Linda's 11-20 reply to Leigh J's 11-19 it's a hard road, but,...
Kelly S 11-20 stopping a med may have caused seizure
Scott Brown's 11-21 reply to Leigh J's 11-19 some possibilities
Marion 11-21 how to cook low-sodium and diabetic food?
Vonda 11-21 seek ideas coping with insomnia and sleeplessness
Lorraine's 11-22 reply to Leigh J's 11-19 tips, hang in there
Joyce S 11-22 update and thanks
Scott Brown's 11-23 reply to Marion's 11-21 Thanksgiving dinners
Donna H's 11-23 reply to Leigh J's 11-19 coping
Donna H's 11-23 reply to Linda's 11-20 coping
Mary 11-23 I need some straight answers & more
Linda's 11-25 reply to Donna's 11-23 coping & more
Annie G's 11-25 repy to Mary's 11-23 possibilities
Rosemarie 11-25 stomach swelling
Jon's 11-25 reply to Rosemarie's 11-25 stomach swelling
Jon 11-25 I could use your help
Colleen M 11-25 calcified layer around heart - anyone else?
Leigh J 11-25 thanks, update
Scott Brown's 11-25 reply to Mary's 11-23 hang in there
Karen S' 11-26 reply to Rosemarie's 11-25 abdominal swelling, edema experience
Natalie K 11-27 some good low sodium cheese
Myrtle C 11-28 just a thought
René, November 2, 2002 - Hi, My sister, age 25, lives near Syracuse, New York and was just diagnosed 2 days ago with dilated cardiomyopathy. Can anyone recommend a doctor or anything else? Anything you would like to share would be welcome, René. email@example.com
Rosemarie, November 4, 2002 - Hi, My husband Frank, who is 64 years old, was diagnosed with cardiomyopathy 2 1/2 years ago after 2 bouts in the hospital with heart failure. He was diagnosed with atrial fibrillation some years before that and had had an ablation procedure, which was reasonably successful. His medication keeps him reasonably well, but he can do very little. He has had 2 pulmonary embolisms so would never be considered for surgery.
He struggles a lot with his feet being sometimes numb and sometimes burning and quite painful. He quite often suffers from cramps. He is currently struggling to shake off shingles, which he contracted in July of this year. I find it hard to know what to expect and also to help him pace himself when he wants to do things and then overdoes it and suffers for several days after that.
He coughs quite a lot, which can also be exhuasting. He is very accepting of his condition and not afraid of dying. I would love to hear from others who have similar conditions or are caring for someone who does. Please e-mail me. I am writing from South Africa. Rosemarie. firstname.lastname@example.org
Carole K, November 4, 2002 - Hi All, Mother had several bouts last week of feeling sick to her stomach and "feeling bad all over." Does anyone else's loved one have these symptoms? The hospice nurse said that it was all part of her body slowing down. They would give her something to settle her stomach. What could be causing this? Thanks for any insight you can give me. Carole. email@example.com
Jon's November 4 reply to Carole K's November 4, 2002 - Hi Carole, There are many possible reasons for upset stomach with severe CHF. One that is often overlooked is as a side effect of ACE inhibitors. It comes from edema in the stomach area that is weirdly related to angioedema. Most - but not all - nausea is drug or drug-interaction related.
That feeling bad all over I can certainly relate to. I directly associate that feeling with heart failure. Your whole body just feels wrong somehow and you just know it's not good, but there is no really accurate way to describe it. It usually passes within 12 hours for me. I hope it passes for her too. Jon.
Carole K's November 5 reply to Jon's November 4, 2002 - Hi Jon, Thanks. I have noticed that she does run in cycles. I have also noticed that she is not eating well and she said that she has no desire for food. There are days that she can only speak above a whisper and then the next day she is fine. This is just a roller coaster ride. I never know what to expect when I go to see her. Her edema in her legs is gone but I know that does not have anything to do with what could be going on in her organs. Thanks for letting me post and ramble, Carole. firstname.lastname@example.org
Lorraine, November 5, 2002 - Hi Jon, I found your web site while searching for info on CHF some time ago and have read The Manual and all the other info. I have never posted before but have been reading for some time now and it helps to know there are others out there going through some of the same things.
My husband is 75 and was diagnosed with CAD in 1987 and has had 2 angioplasties. He had to have a bypass in 1988 in the middle of the night, which left him with lots of damage. He got a pacemaker in 1994 and later in 1994 was diagnosed with CHF after just making it to a hospital at 3:00 AM. He ad a mild stroke in 1996 but recovered very well and was able to travel and lead a pretty good life until a couple of years ago. His EF was 23% and he was not doing well, so his cardiologist suggested the CHF Clinic at our hospital here. He started IV Primacor for 6 hours each week and felt better for awhile. His 7 year old pacemaker was replaced last October with the new Medtronic InSync with 3 leads. That helped some but he is pretty weak now and doesn't feel like doing anything anymore.
He is on lots of meds and his cardiologist sees him every week at the clinic. He said last week we could try CoQ10 and that might help. We will start that today. His doctor said he is class 3 or possibly 4. The same doctor has taken care of him since 1987 and he has not had to go into the hospital except for his pacemaker, since 1996. I know this is long, but just wanted to share. Thanks for the site and God bless you, Lorraine. email@example.com
Myrtle C's November 6 reply to Lorraine's November 5, 2002 - Hi Lorraine, I am saddened to know you are having to live with an illness that causes your dear husband to be so weak. Have you and he talked about his wishes for end-stage? It seems as if this might be a good time to do that. Does he want to use hospice or does he want to do everything possible before going into that good night. With my mom, I knew she didn't want to be rescusitated. The procedure can be devastating to anyone, much less someone who is in end-stage heart failure. To give him a choice now would help you in the event it becomes necessary. A living will would also be something for you both to think about. God be with you both. My best wishes for you and him. firstname.lastname@example.org
Sandy's November 6 reply to Lorraine's November 5, 2002 - Welcome Lorraine! You are among friends. I don't have answers to your questions, but I do understand your concerns. :-) Sandy. email@example.com
Debra K, November 6, 2002 - Hi, I'm a caregiver to my husband, who was diagnosed with CHF and dilated cardiomyopathy this past April. Do any of you caregivers have Fibromyalgia? I'm my husband's sole caregiver and there are days where I find it extremely difficult to manage both our care! Yes, I see a psychologist, a psych (for meds) and I've become knowledgeable of both of our conditions. How do you do it? How do you keep up? firstname.lastname@example.org
Norma, November 6, 2002 - Hi, It's been quite some time since my last post, I think late July. My dad's CHF condition took a rapid nosedive then. He was hospitalized again, released, then admitted for a final time. He died in a peaceful morphine induced sleep. I like to think that his body was just too weak to contain the great big spirit that was him.
I've finally come out of the fog and am accepting and moving on. My mum is coming along nicely too. I just want to take the time to thank Jon for hosting this site and every one of you at here for helping me understand my dad's condition, and for the support of all of you who were "in the same boat" with me. You were all a lifeline when I needed it most. I wish you all the very best of everything that life throws your way. Love, Norma. email@example.com
Lorraine's November 7 reply to Myrtle C's November 6, 2002 - Hi, Thanks for your response and your concern. We both have living wills, medical power of attorney, and have discussed what we want and don't want. We have both even prearranged our funerals. I would not hesitate to go with hospice when that time comes. I have been blessed with good health and don't have to take any meds at all. I have learned how to handle most everything.
All of our family live out of town but we stay close by a phone and they visit us, since we can't travel now. We also have a wonderful church family. We have lots of support but unless someone has dealt with CHF, they just don't understand why he is so weak. Most people see him on his good days. It is good to have this site to exchange info. We take one day at a time and are thankful for the 55 plus years we have had together. Does anyone know how long it takes to tell if CoQ10 is helping? Lorraine. firstname.lastname@example.org
Jon's note: Personally, I would give it 90 days
Lorraine's November 7 reply to Sandy's November 6, 2002 - Hi, Thanks for the welcome. It sure helps to know others understand and care. Lorraine. email@example.com
Jean Ann Hudson, November 8, 2002 - Hi, I know how Jon feels about having a CHF specialist doctor, but what do the rest of you think? My husband's internist and lung specialist say they can do anything a cardiologist can do, and would refer him when neccesary. We live near a teaching hospital at the University of Michigan but my husband does not want to go through tests as he is seen yearly in a local hospital when in intensive care last two for pneumonia. He has all the proper COPD and CHF meds now. He is 74 and very, very tired. firstname.lastname@example.org
Lorraine's November 9 reply to Jean Ann Hudson's November 8, 2002 - Hi, My husband is 75 and also very, very tired. When he had his first heart problem in 1987 his internist sent him to a cardiologist. Soon after that, the internist retired. My husband did not want to find a new doctor so the cardiologist took over as his primary care doctor. He takes care of all the everyday problems and refers him to the proper doctor for things he doesn't feel qualified to handle. He and his staff know us and our problems. He now sees my husband every week at the CHF clinic and keeps up with lab reports and prescribes all his meds.
If you both have confidence in the doctor you are using and don't feel there could be much improvement, then I wouldn't put him through the stress. If you don't think he is doing as well as he could, then by all means find a specialist. Lorraine. email@example.com
Susan B, November 9, 2002 - Hi everyone! My husband was cardioverted for the second time in 2 years. About 4 to 6 weeks after the cardioversion he is again turning blue and not doing very well, just like after the first time. Has anyone else seen this pattern? It could be that he is overdoing it now that he started feeling better. I am not sure. He is not blue when he is resting, but he was raking the leaves and SOB. Thank you to every one here. As always, thank you Jon. Susan B. firstname.lastname@example.org
Carole K, November 11, 2002 - Hi Everyone, I was hoping someone might have some insight into something my mother is doing. I have noticed it over the last several months and it seems to be increasing in the last few weeks. To refresh your memory, mother is 88 years old with end-stage heart disease. She breathes in very deep and then "shudders." I not sure if I am explaining it right. If someone out there knows why she is doing this, please let me know. Thanks, Carole K. email@example.com
Rosemarie, November 11, 2002 - Hi, Is there anyone who would be able to explain the following chest x-ray report for my husband please, or at least put it in layman's terms:
"The transverse diameter of the cardiac outline is significantly enlarged, the ratio measuring 21/33/5. It has biventricular configuration. There is slight blurring of the hilar regions with some peri-bronchial cuffing. Septal lines are seen at both costophrenic angles and a focus of linear atelectasis is evident in the left mid zone. A degree of upper lobe blood diversion is evident. No pleural effusions of any significance demonstrate. There is no mediastinal lymphadenopathy. The bony thorax shows evidence of mild degenerative spondylotic change in the upper dorsal region. No soft tissue abnormaility noted."
With thanks. firstname.lastname@example.org
Tom, November 12, 2002 - Hello, I am an RN working for Vasomedical. We are sponsoring a heart failure study that is being conducted in over 25 locations across the USA. It involves using EECP or Enhanced External Counterpulsation, an FDA cleared medical treatment to treat patients with heart failure.
Half the group is monitored under aggressive medical therapy, the other half gets a course of EECP also. To qualify one needs an ejection fraction of 35% or less, ability to walk 3 minutes on a treadmill, and must have ischemic or dilated idiopathic cardiomyopathy.
If anyone is interested in learning more, please contact me and I will be glad to give you more information and refer you to a study site. Best yet, it is all free to patients. Best regards, Tom. email@example.com
Lois B, November 13, 2002 - Hi, I just wanted to know if anyone has a definition for "atypical heart pain." My husband and I spent 2 hours at the ER where he was given 12 ml of morphine last night. His ICD went off at a heart rate of 235 and we went home with the diagnosis of atypical heart pain and were told to see our cardiologist in 3 days. He had 2 hours of intense pain but they do not do an x-ray or blood test anymore because he is "at the end" of end-stage.
I think he probably had another heart attack. What do you think? Anyhow I was just interested in knowing if there was an actual definition for this or rather some term made up by the doctor on duty in ER because angina did not quite fit this time. Lsom1017@aol.com
Jon's November 13 reply to Lois B's November 13, 2002 - Hi Lois, It just means chest pain not of any common type. Jon.
Natalie K's November 16 reply to Debra K's November 6, 2002 - Hi, A dear friend suffered with fibromyalgia until he found an acupuncturist, who has kept his condition under control for years now. It's something to consider. firstname.lastname@example.org
Sheryl LaCoursiere, November 18, 2002 - Dear Readers, Jon has asked me to respond to you via this forum. Some of you may have received an email from me informing you of a study, which may provide online nurse support for cardiac patients. My intent was to personalize the invitation, but erroneously I did not read the site policy. Any reader who wishes to have their e-mail address permanently deleted from my records may contact me at email@example.com and it will be done immediately. Please be assured that I had no malicious intent. I have heart disease in my family, and know the trials and tribulations from a personal as well as professional side. Sincerely, Sheryl LaCoursiere. firstname.lastname@example.org
Jon's note: I told Sheryl that I might be willing to work with her in bringing opportunities to everyone here, but I don't want e-mail addresses used lightly round here. Why bug people by e-mail when a post here can guide you to a form that lets you sign up if you want to sign up? ;-)
Carole K, November 18, 2002 - Hi Everyone, I have notice over the weekend that my mother's (age 88 with end-stage heart disease) skin has a yellow tint. I asked hospice about it and they said that they do not do testing for that and that there might be liver problems now involved because of the slowdown of the heart. Has anyone had experience with their loved one and the onset of liver problems with CHF, end-stage or not? Thanks, Carole. email@example.com
Lorraine's November 18 reply to Carole K's November 18, 2002 - Hi Carole, The Gastro doctor told us my husband's CHF causes blood to back up in the liver. He didn't have any suggestions for doing anything at this stage. It is not causing any pain, just abnormal readings. Lorraine. firstname.lastname@example.org
Scott Brown's November 19 reply to Carole K's November 18, 2002 - Hi Carole, The yellowing of the skin is called jaundice. My dad had marked jaundice several times with his end-stage heart failure. You are correct in stating this is often caused by a problem with the liver. In my dad's case, the jaundice always went away once the CHF condition was improved, usually by drying him out with IV diuretics. This is a common condition and it needs to be considered and tested. However, in many cases the condition will improve. It is impossible to know without a physician consulting your mom's specific case. Thanks, Scott Brown. email@example.com
Scott Brown, November 19, 2002 - Hi, I would like to ask anyone interested to please pray for my family. My dad was first diagnosed with CHF 16 years ago. After many illnesses, he finally made in on the transplant list at age 60. He had his heart transplant in April.
Immediately after the surgery, he had double pneumonia. He was on a respirator several weeks and finally seemed to beat the illness after 4 months. He made it home for a few weeks and was improving for the first while. One day, he rapidly became ill. He was taken to hospital and eventally diagnosed with a fungus in his lungs. The fungus spread daily on the x-rays. He required a ventilator to breathe. Our cardiologist (Dr. Stuart Smith, the best doctor I have ever met) found a new recently approved drug which slowly brought him back to health.
While almost ready to leave the hospital, he developed a case of shingles which made him very ill. The immune system suppression was his worst enemy! He also developed a painful lower back problem called discitis. Once this was all cleared up, we had the road to recovery mapped! Unfortunately, he was hit hard by pneumonia along with 2 bacterial infections in his blood (one is e-coli).
I have the same dilated cardiomyopathy as my dad, with a 23% ejection fraction. My small family has been through so much. My mom is resigned to the fact my dad is not likely strong enough to dodge another bullet. How can I best help my mom if he passes away? Do I want to be at the hospital when they disconnect my dad?
The transplant program in Toronto, Canada has been excellent. Unfortunately, I think my dad received his transplant about a year too late. If doctors are going to wait until the last minute (due to waiting lists) before they transplant, the rest of the organs in the CHFer's body are going to be too weak to survive even with a new pump.
I will say that my dad's transplanted heart has worked perfectly. It's too bad the anti-rejection drugs eventually took their toll. Like I mentioned, if you say a prayer for us, it would be appreciated. Thanks, Scott Brown. Kitchenerguy@hotmail.com
Jon's note: You've got it
Scott Brown's November 19 reply to Lois B's November 13, 2002 - Hi Lois, Your post made me shudder! My dad is proof that you can live in the end-stage of end-stage heart failure for a long time! I do not think there is anything about the description of your husband's problem to point directly at a heart attack. This could be an "electrical" problem.
Does your husband have a pacemaker or ICD? A pacemaker with built-in defibrillator will give the heart a good jolt when it starts acting up. Also, some good information about heart function is stored in such a device's software, that can help your doctor see what is going on. Best of luck to your husband! Scott B. firstname.lastname@example.org
Scott Brown's November 19 reply to Susan B's November 9, 2002 - Hi Susan, My dad had about 4 or 5 cardioversions done. After the first one, it usually works very well. The patient feels much better for a certain period of time. Once the arrhythmia returns, you are back in the same boat. So like your husband, they will cardiovert again. Often times, the positive results will not "stick" as long as the last time. I guess you mentioned, about 2 weeks. They might try the procedure once or twice more if your husband doesn't mind having his heart stopped and started, it can be quite unsettling.
Eventually, there is no longer a sustained benefit from cardioversion and your husband will be past that stage. Believe it or not, people can live in that state for a long time. In most cases however, it would be difficult to hold down a full-time job.
To my knowledge, there is still some debate about why cardioversion works. If the electrical pathways have been stretched and damaged by the enlargement of the heart, why does restarting the heart work? Why does it stop working? Feel free to e-mail me directly if you have any specific questions. I will try my best to answer the questions based on my experiences. I will not have the answers for all scenerios. Thanks, Scott B. email@example.com
Leigh J, November 19, 2002 - Hi, I have been married for 20 years. All our married life, heart disease "slept in a corner of our home." My husband had a heart attack in 1977, bypass in 1984, bouts with angina, very bad atrial fibrillation, poor results on blood work, etc,.., but we managed to live normally. Two years ago he was diagnosed with class 3 CHF, and his EF is 15%. That doctor gave him 3 to 5 years to live. They implanted a 2-lead pacemaker/ICD.
We recently changed cardiologists and soon will begin tests for a place on the transplant list. I retired early to enjoy our time but still need to work part-time. Suddenly I am afraid to leave home for any long length of time. I had to not work for 3 months so I was home or a short distance away but now I work 2 to 3 days a week. I know it is irrational but my body, in reaction to my irrationality, is trying to keep me home in the for of debilitating migraines.
I have done well all these years by living a day at a time but suddenly the fear is getting to me and I hate it. Does anyone else experience this? if so, what did you do? Leigh J. firstname.lastname@example.org
Carole K's November 19 reply to Carole K's November 5, 2002 - Hi Carole, In end-stage CHF, the lack of blood supply to major organs like the stomach can cause issues with not wanting to eat. It is easy to underestimate the effect of a small appetite. My dad would get so depressed because he could no longer eat without feeling ill. For him, it took a simple pleasure away from him, one of the few he had left.
My dad had a lot of success with prescriptions for upset stomach. The doctor can pick a good one. With a pill before every meal, eating can be enjoyable again. If you e-mail me, I can give you the exact name of the one that worked for him.
Is your mom skinny to start with? If not, taking off a few pounds is one of the best ways to take some of the load off the heart as a patient approaches end-stage failure; at least I keep telling myself that's when I am going to lose this gut! If your mom is already light, she likely cannot afford to lose the weight. You will need to help to fatten her up with the best possible foods, of course. I wish you the best of luck and I hope this information is helpful. Thanks, Scott B. Kitchenerguy@hotmail.com
Dawn B's November 19 reply to Scott Brown's November 19, 2002 - Hi Scott, I just wanted you to know that you are in my prayers. Dr Smith was my doctor at the Ottawa Heart Institute until he left on December 13, 2000. I received my heart on December 15, 2000. He is one of the best doctors I have ever met and I trusted him totally. I have had very few complications so I don't know what you and your family are going through. You are in my thoughts and prayers. email@example.com
Kelly S' November 19 reply to Scott Brown's November 19, 2002 - Hi, You've asked some interesting questions. How to help your mum when your dad passes? Be there with her and let her know you love her. Should you be with your dad during his final passing? That's up to every individual. I was with my dad when he took his last breath. He was in a coma and passed peacefully. I personally wouldn't do it any other way, but every individual deals with death differently. My prayers go out to your entire family and my hope is that you're able to spend many more years together. firstname.lastname@example.org
Linda's November 20 reply to Leigh J's November 19, 2002 - Hi Leigh, Been there! When Jon was first diagnosed with CHF, they gave him up to 2 years. I remember rolling over to check to see if he was still breathing during the night; worrying if he exerted himself a little bit; crying over the thought of becoming a widow; wondering if it was the beginning of the end every time he had a bad time.
It took me awhile (I honestly don't remember, but maybe a year or more) before I came to look at his illness as a chronic illness, rather than a terminal illness. I'm not in denial. I know Jon's life is shortened due to CHF, but I've learned how to view life now as "normal" and just take each day as it comes. Jon can take care of himself, even more than he may have once thought, and the odds are that today isn't the day his life will end.
By the way, it's almost exactly 8 years since he was diagnosed with CHF (and an EF of 13%), and he's going strong! Hang in there, and God bless you! Linda. email@example.com
Kelly S, November 20, 2002 - Hi, My husband met with his cardiologist last week and got a good report. He's doing well on the meds. He had an EEG and nothing showed up. I think they've determined his seizure a few weeks ago was caused due to him stopping one of his meds and then starting again! I'm just hoping he doesn't do this again in the near future because it was pretty scary. Even though I haven't been posting, I have been reading the posts and have been keeping everyone in my prayers. firstname.lastname@example.org
Scott Brown's November 21 reply to Leigh J's November 19, 2002 - Hi Leigh, I think you need to have a little confidence in the ICD. I assume it is configured to defibrillate him in case of an heart event? As a second line of defence, you could wear a pager or a cell phone that would notify you if your husband pressed a button on a cordless phone at home. This would be relatively inexpensive and give you more peace of mind. There are also devices you can get through medical companies which alert a central station.
One other suggestion is to make a deal with your husband to limit potentially stressful activities while you are not in the house. For example, walking stairs or taking a shower could be stressful activities. He should only do these things while you are in the house.
My dad had one event where his heart rate raced over 220 beats per minute. This was after a shower. For advanced DCM, the steam might cause breathing problems. The water on skin can cause the heart to speed up. I hope these suggestions help. Thanks, Scott B. email@example.com
Marion, November 21, 2002 - Hi, my mother-in-law (a CHF patient since 2000) is currently in the hospital being treated for CHF and pneumonia. Now they have diagnosed diabetes! The doctors are not sure if this is long-term or just her body's response to all the meds, but are treating it like it is a firm diagnosis: teaching her to give herself the shots, giving her the testing kit and showing her how to use it. Does anyone have experience/information with this? How does one cook a low-sodium, no-sugar Thanksgiving dinner? firstname.lastname@example.org
Vonda, November 21, 2002 - Hi, It's been awhile since I've written. My mom is 57 years old and has CHF along with asthma. Since last November, we have been on a huge roller coaster trying to get her life situated and trying to get educated. People are amazed to see her living. That tells you she's been through a lot. She is at the point now that she can eat most of the time without getting sick although it does still happen sometime.
My question is to anyone who can help with this. She doesn't sleep well at night. I believe that it is her CHF. She doesn't know what to think. She doesn't read this site and really doesn't know what others go through. The doctor did prescribe Ambien but it is for short-term and she hasn't tried it. I don't think this is going to be a short-term problem.
Any help would be most appreciated. Also, I am so glad that Jon answered God's call to this site to help patients and loved ones go through trying times such as these. Thanks Jon! email@example.com
Lorraine's November 22 reply to Leigh J's November 19, 2002 - Hi Leigh, I am sorry you are having a rough time with your husband's condition. Since I have been reading these posts, I have been amazed at the younger people with CHF. My husband is 75 and we have been dealing with heart disease for 15 years and CHF for 8 years. It is not an easy thing to live with but I try to keep my routine as normal as possible.
I don't work but I do leave him at times. I have a cellphone and he can contact me if necessary. Also, an EMS technician told our senior group to type up a medical sheet with illnesses, medicines, doctors info, etc,..., and put it in a large ziploc bag and tack it to the back of our front door or put it where it could easily be seen. If he was home alone, that info could be very helpful and might even save a life. It can be very helpful even if you are home as it is hard to remember everything when you are excited. I hope things get better for you. You have lots of support at this site, Lorraine. firstname.lastname@example.org
Joyce S, November 22, 2002 - Hi, I had posted here two years ago about my best friend, aged 36 at the time, who was diagnosed with dilated cardiomyopathy. I just wanted to quickly post that after a year of medication he went back to work full-duty as a police officer. I know that this may be the exception and not the rule, but perhaps it will give someone else hope.
When he first returned to work, he tired easily and was exhausted when he had to ride a bicycle on patrol, but slowly and surely he seems much stronger. He decided to go to college, something he always talked about and never pursued. He no longer regularly talks about dying although he sometimes mentions that he may not live to 90 like his grandfather, but then 2 years ago the doctors told him he had less than 5 years.
A few months ago he felt palpitations in his chest and went back to the cardiologist, who put him on a holter monitor, and of coruse the palpitations didn't occur when the monitor was on. He seems to think it was stress-related because a few weeks later they were gone. We all have our fingers crossed. To Jon, what a wonderful site you have. Thank you. email@example.com
Scott Brown's November 23 reply to Marion's November 21, 2002 - Hello Marion, There are a lot of CHF people in the same boat. In fact, the majority of transplant patients become diabetic when they start anti-rejection medications. Do you know how much sodium the cardiologist recommends for the patient's diet? This is commonly 1 or 2 grams. My cardiologist is okay with 2 to 3 grams, which is pretty generous. The sodium is causing fluid to be retained and in turn this can raise blood pressure, etc. A diuretic can help in this case.
As far as Thanksgiving, watch for the following: Check the sodium content of all foods on the table, including the turkey. You should be able to find turkey with very little sodium. If the turkey says Butterball, there is a good chance it will be higher in sodium due to more processing in the plant. Do not add salt to any of the cooking. Let everyone add their own salt at the table. Your mother in-law should not add salt. Gravy is often a culprit. It often does not taste as good without salt. Either find a recipe for spices to get around the salt factor, or have your mother-in-law avoid the gravy. If this is a problem, let her have a few spoonfuls only.
Some dieticians will start looking at root vegetables like carrots to question sodium content. In fact, you need to eat a lot of carrots to get too much sodium; same with squash. She should avoid pickled stuff like pickles and olives. They say frozen veggies are often sprayed with a sodium mist to preserve the product better. You might want to rinse the veggies first. (Jon's note - No Salt Added canned veggies or fresh veggies solve the problem nicely) Watch for sneaky sources of sodium like "soft water" from using water softener. If you are boiling with soft water, stop it!
Take it easy on the stuffing. There is sodium in the bread and some in the celery if you use it, and stuffing is always salted if you don't make it yourself. A bun or roll may be okay as well but check the sodium first! Better yet, make it yourself. Cut the sodium by 50% and it will taste the same but it will still be high in carbohydrates. Carbohydrate intake has to be very carefully watched in diabetics as well since in the blood, carbohydrates behave a lot like sugars. The dessert and fruits are where you need to worry about sugar itself. Maybe a sliver of pumpkin pie would be okay, maybe not. There are some great diabetic recipes with angel food cake, sugarless ice cream, sugarless jello, etc.
Most of all, keep in mind that your mother-in-law's health is more important than Thanksgiving dinner (at least in our house). Her Thanksgiving dinner will turn out to be memorable for the wrong reasons if her feet swell or she gets a headache. If your family can eat the same meal and play it up as great, it will make your mother-in-law feel comfortable and encourage her. With a little practice, it becomes life style and you don't even notice that the salt shaker is missing, honest. Scott B. firstname.lastname@example.org
Jon's note: Like Scott said, be absolutely, positively, certain what her sodium intake limit is. You may have to cut back much further than what is stated here. Sometimes CHFers doing well can be much more liberal than CHFers not doing well. I would avoid all stuffing, all breads, and all gravy myself
Donna H's November 23 reply to Leigh J's November 19, 2002 - Hi, Although my husband has not been ill for as long as yours, he worked in a job (a police officer) that made me fear for his life every day. Then 2 years he was diagnosed with CHF. At first I looked at it as something he would soon "get over" but this past summer he got worse and had to have a pacemaker. Since then, I have noticed that I am unable to leave him for very long without worrying. I have to work every day and am lucky that I own my own business so he can be here with me.
I had to go away on business for a day and a half recently and probably called him a dozen times. I know it is irrational but I just can't help it. I have even thought of getting counseling but am afraid that a counselor would think I was being silly. I have noticed that my worrying seems to go along with being a little depressed. Do you have any problems with depression?
I don't feel that I have any answers for you but I will tell you some things that have helped me. I bought my husband a special container for his meds so that we both know when he has taken them. I make a specific time that we will contact each other. I also let his friends know when I have to be away for several hours and they contact him and talk with him. It hasn't solved my worrying completely, but it has helped. email@example.com
Donna H's November 23 reply to Linda's November 20, 2002 - Hi Linda, Your reply to Leigh made me feel much better. Recently my husband took a turn for the worse and in reading about CHF I found some disturbing statistics.
At the same time, most people don't seem to understand CHF and think that my husband is completely well. I often have people tell me that their grandmother or grandfather got a pacemaker and never had a bit of trouble. They don't understand that having CHF at 49 gives you a different set of problems. Physically, he will never be able to do what he used to do, even though he would like to. I had to hide the splitting maul to keep him from splitting wood!
We are looking at life in a new way. Each day is a gift and the days he feels well are special gifts. We are still planning for the future but we try to be realistic at the same time. Time together is more important than anything else. Hearing that it has been 8 years since Jon's diagnosis reassures me that we can have a full and happy life. firstname.lastname@example.org
Jon's note: And I'm as ornery as ever! <g>
Mary, November 23, 2002 - Hi, In September my husband had an LVAD put in. Within 3 weeks they knew there was an infection and he was put on oral antibiotics. October 24 he was admitted to ICU with an elevated temperature and on October 26 he had a stroke. Surgery to clean up the infection was supposed to happen on October 28 but wasn't performed until October 31.
He was bleeding internally as well as his pump valves being infected, and it was removed. Supopsedly, his heart is better? He was on a ventilator for 6 days. When it was removed, the first day he seemed fine, but his breathing became more labored and he suffered more strokes and was put back on the ventilator 3 days later. He has now been back on it for 2 weeks, and has had to start dialysis for his kidneys because of the damage done by the antibotics.
The next step seems to be a tracheotomy so they can take him off the ventilator, but no one can say if this is a permanent solution or a temporary one. Sometimes I think we would have done just as well to have sat at home and let the congestive heart failure play itself out. It seems to me that we have truly taken away his quality of life and I never seem to know what is the right thing to do and not to do since the doctors seem to double talk. One tells you it's not long-term (dialysis and tracheotomy) and the others say it will be a life style.
I need a honest answer. I am not willing to subject him to any more torment and torture that is available to us by modern medicine.
On the side of medicine, LVAD infections do not happen often and the LVAD generally does more good than harm. Ours is a rare case. It is not my intention to discourage folks from going the avenue of an LVAD since it often a good last resort if a donor heart is not available. My husband had the HeartMate, which is the LVAD that was recently approved for destination therapy. email@example.com
Linda's November 25 reply to Donna's November 23, 2002 - Hi Donna, I know the frustration of having a very sick spouse who doesn't "look" sick! How many times have I told Jon not to take the Disability placard off the rearview mirror until we've backed out of the disabled parking space and started driving away?! <g> In regard to "down turns," every person's illness is different but in Jon's case, he has down turns and up turns. I used to think every time he had a down turn that this was the beginning of the end! Sometimes his down turns last a day or two, sometimes a week or two, sometimes a few months or more. I suppose I will be taken by surprise when he ever takes a serious down turn! Linda. firstname.lastname@example.org
Annie G's November 25 reply to Mary's November 23, 2002 - Hi Mary, I'm sorry you and your husband are having such a bad time. As far as double speak from the doctors and not being sure about what is best for your husband, there may be a few ways to try and get some answers. If something I say sounds good, try it out.
First, try to have a trusted friend or family member with you when you are asking questions of the doctors. What we hear is not always what is said, or you only hear part of it. Have you every found yourself so surprised by one statement that you don't hear the whole conversation? If you think that some docs are not being upfront with you, think of the source. Is the cardiologist telling you that dialysis may be temporary or is it the kidney specialist telling you it may be temporary? You may want to ask to set up a conference with your husband's primary or attending doctor and some of the specialists. You can try approaching one of the doctors directly. If they are not approachable or if they aren't around when you are, ask the nurse in charge of the department, they have different names now like leadership or head nurses or charge nurses.
Another person to ask or approach is a medical social worker. They can sometimes facilitate these meetings. A hospital Patient Representative is another possibility. Also, sometimes it really is too soon to tell if a rough hospitalisation is a bump in the road or the beginning of the end. Sometimes doctors and nurses really don't know. There are always people that improve and leave hospitals that nobody thought would do so, just as there are people who die in the hospital who are expected to get better.
Remember to include your husband in all the decisions he is capable of making. It's important to remember that you do the best you can with the information you have at the time. Please don't berate yourself for any decision you make. You are trying your best and trying to do what is right for your husband. Good luck, Annie G. email@example.com
Rosemarie, November 25, 2002 - Hi, I notice on reading other posts on this site that quite often disinterest in eating is mentioned, so I thought someone out there might be able to tell me if an "enlarged" stomach is normal for CHF patients. My husband fluctuates between eating very little and then normally but never excessively, but his stomach over the past couple of years has just grown. He doesn't experience swelling anywhere else but I'm wondering if this is associated? My sincere thanks to those who have emailed me with regard to previous posts. This is such a wonderful idea. Thank you, Jon. firstname.lastname@example.org
Jon's November 25 reply to Rosemarie's November 25, 2002 - Hi Rosemarie, Edema in the stomach is actually pretty common but doctors rarely recognize it. It's my main location for swelling, and my stomach gets round and hard when it happens. It could be chronic edema or it could be a digestion problem or other problem either caused by, or aggravated by, his CHF. I'd get it checked out, if for nothing else, to see if his comfort level can be increased. Jon.
Jon, November 25, 2002 - Hi everyone, Please see this post (let it load). I would very much appreciate your participation. In fact, I need it! Jon.
Colleen M, November 25, 2002 - Hi, My mom had the symptoms of CHF, but it turns out what she really has is a calcified layer around her heart, mimicking all the CHF symptoms, that needs to be removed. It is expected that this layer developed as a result of untreated or incorrectly treated respiratory infection. She has surgery scheduled for December 3rd and we are gearing up. Has anyone else had a relative experience this? email@example.com
Leigh J, November 25, 2002 - Hi, Thanks all who wrote about my fear of being away from home. It seems taking action (talking about it to my friends and with my spouse, posting here and just doing the next right thing) has helped. We are going to put a ziploc bag of info on our door. Thanks for the suggestion. Bill is having tests on December 3 to see if he can go on a transplant list. I know I will become more anxious as time approaches but it is my turn for Thanksgiving, we have a group of folks who have no family like me or whose family is out of town like Bill's and we rotate having it. So this will keeep me busy. Thanks again. firstname.lastname@example.org
Scott Brown's November 25 reply to Mary's November 23, 2002 - Hi Mary, I can identify with your dilemma completely. I personally think it is not very useful to question these life and death decisions. When you and your husband decided to get the LVAD surgery, you were just trying to buy a chance to improve his quality of life. I think that is a terrific decision. How could you decide anything different knowing that LVAD surgeries can be very beneficial to patients with no other options?
The end-stages of CHF can be so hard, not just on the patient but the people around them. The doctors simply do not know what the outcome is going to be for your husband. I'm sure you realize they are not trying to be forthcoming with you. They want to be optimistic but at the same time, they do not want to build up false hope. Physicians have learned that it is easier to set your expections low and have your expectations exceeded, than to set them high and not live up to the promise.
I wish your husband a complete and full recovery. I hope all of the measures are temporary until your husband gets his strength back. Thanks, Scott B. email@example.com
Karen S' November 26 reply to Rosemarie's November 25, 2002 - Dear Rosemarie, My husband's edema is usually in his abdomen and face, and only occasionally in his feet, legs and hands. It has been almost 2 years since my husband had complications from a heart attack which left him with heart failure, but thankfully alive. At the beginning I was extremely aggravated by medical practitioners who do not recognize abdominal swelling as edema from heart failure. Now I am comfortable with my own knowledge. Take care, Karen S. firstname.lastname@example.org
Natalie K, November 27, 2002 - Hi, I just received my first order from www.heluvagood.com and their cheese is pretty good to have only 8 to 10 mg of sodium per ounce. At least it "felt right" in my mouth. The service was New York City fast. email@example.com
Myrtle C, November 28, 2002 - Hi to all, Hope is faith holding out its hands in the dark - George Iles. firstname.lastname@example.org
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.