The paperwork never ends The Archives
January 1-15, 2007 Archive Index

Jon 1-3     just a mini-rant, no big deal
Sarah K 1-3     ICD beeping - anyone else?
Sarah K 1-3     seek heart transplant recipient boards, web sites
Lowell P 1-3     seek experiences with numb hands & arms
Nancy S' 1-3 reply to Gwen O's 12-31     and also to Diane
Tom S 1-3     happy holidays to all
Mary C 1-3     seek ways to escape decompensation episode
Sharon L's 1-3 reply to Giorg's 12-31     anemia experience
Pat Y 1-6     donating
Jon 1-6     we all must keep on trying to cope!
Lisa Z 1-6     seek suggestions for my dad
Mary C's 1-6 reply to Jon's 1-3     update - should I restrict exercise for now also?
Cheryl S 1-6     seek Cleveland Clinic or dofetilide experiences
William J's 1-6 reply to Giorg's 12-31     always look over test results yourself!
William J's 1-6 reply to Nancy S' 1-3     glad to hear you're improving & more
Jon 1-9     just hasn't been my month
Robert M 1-9     do ARBs work as well as ACE inhibitors?
Susan L's 1-9 reply to Sarah K's 1-3     local heart transplant support groups
Roger H's 1-9 reply to Sharon L's 1-3     why not use Splenda?
Gwyn O's 1-9 reply to Nancy S' 1-3     am really struggling right now
Val R's 1-9 reply to Lowell P's 1-3     arms going to sleep
Linda K's 1-9 reply to Jon's 1-3     dehydration and edema at the same time
Jennifer S 1-9     new to CHF, glad to find you
Tony M 1-9     Jon, sleep problems update
Lisa Z 1-11     update, I am not coping well right now
Nancy S' 1-11 reply to Gwen O's 1-9     leg numbness, pain and update
Gene G's 1-11 reply to Jon's 1-9     does this make sense?
Lowell P 1-12     seek generic Avapro or Toprol-XL
Robert H 1-13     seek weight gain after device implant experiences?
Holly M's 1-13 reply to Sarah K's 1-3     waiting on a donor heart experience
Janine A 1-13     seek honest end-stage information & experiences
Roger G 1-13     diuretic switching experience
Tom S' 1-15 reply to Robert H's 1-13     weight gain and loss
Cindy W 1-15     swollen face and throat - any ideas?
Mary C's 1-15 reply to Roger G's 1-13     diuretics experience
Robert M 1-15     should we have our dad's CHF treated?
Jerry C 1-15     who treats costochondritis?
Tonya A 1-15     seek prevacid with Coreg problems experiences
Sue R 1-15     seek ideas about my dad's death
Jon's 1-15 reply to Sue R's 1-15     he did well all things considered

Jon, January 3, 2006 - Hi all, Man, I hate bad days. Sorry, just a mini-rant I needed to get off my chest. I did manage to get the New Page updated, though. Jon.

Sarah K, January 3, 2006 - Hi everyone, About 6 weeks ago, I noticed that there was a short alarm sound (similar to that of an European police siren) coming from my ICD at 11:15 AM and PM and at 5:15 AM and PM. At the time, I was on an external VAD so we weren't sure if it was VAD or the ICD. The EP department poo-pooed it saying that it was impossible to come from the ICD. The surgeons felt the same about the VAD.
     The ICD was later turned off for a weekend in anticipation of a transplant and yet we still heard the alarm. Still later, when it was removed for the transplant (yeah!), I was allowed to keep ICD and I heard it alarming at the same times. Has anyone else ever had this issue? It's clearly not an issue any longer, but I am just curious. Thanks.
Jon's note: This usually means its battery is running low and needs replacement.

Sarah K, January 3, 2006 - Hi all, Does anyone know of a site/board similar to this one but for heart transplantees? I was recently transplanted and have found little in the way of web support for heart transplants. There are a lot of liver/kidney sites, but I would prefer to find a heart site. Thanks for any advice. I love my new heart, but this is incredibly overwhelming and it would be great to find some emotional support.
Jon's note: Just a note to those seeking secondary e-mail addresses for online use - please avoid gmail addresses. They are a spammer favorite and could trigger a filter on my system, causing your post or message to be trashed.

Lowell P, January 3, 2006 - Hi Jon, Have you or anyone reading this had any experience with your hands and arms becoming numb after or during a nap? This has happened to me several times in the past month. I did find a web site where many folks complained of it. They also had CHF but no explanation other than possibly low blood pressure. Thanks.
Jon's note: I get this but attribute it to the fact the I (and many CHFers) don't move as much as other people in their sleep.

Nancy S' January 3 reply to Gwen O's December 31, 2006 - Hi Gwen, I'm sorry that your doctor did not listen to you, but am glad you found one who would and who diagnosed the problem. It will take awhile for the meds to get into your system and some of them may even make you feel worse at first but if you can tolerate them at all, please try.
     I was evaluated for the Group Test for Medtronic's biventricular pacemaker but before I could be sent to them I had to get my body in good enough shape for the test. I was then sent to my CHF specialist, thank You God! Anyway, I finally got strength enough to be referred but it took about 6 months to do so. My cardiologist originally prescribed Prinivil at 5mg per day, Lasix at 20mg per day, pPotassium 10 mEq a day. The specialist added Coreg at 3.25mg twice a day, Aldactone (spironolactone) at 25mg daily, and I have 2 inhalers due to asthma. He tried raising my prinivil and Coreg but my blood pressure was too low.
     That was 5 years ago and I am now up to 12.5mg of Coreg and doing well. My blood pressure is even in the low to normal range. So, don't give up. If you do think something is wrong, don't hesitate to ask your doctor since it may really be something going on. Good luck and God bless. I hope you feel much better soon. I forgot to say that at first my specialist told me that if he couldn't get much improvement with the drugs I would have to go on a transplant list. Thank God again that didn't have to happen.
     Diane, I'm sorry your family is having a hard time. Even though you all don't care for your father's in law wife doesn't mean you can't help out. If she is like most people, she'd love some time to herself so you could take turns sitting with him while she gets out for awhile. I would also talk to his doctor and ask him to mention that anyone who is going to smoke do so outside. Maybe make her an area with a comfy lawn chair and a small table and ash tray. Most people don't like it at first but soon get used to it.
     They made the people where I work stop smoking 25 feet from any doors and at first they complained but they do it and are getting used to it now. As for hospice care, I believe they have changed their rules and now you can have hospice in and still see your doctors and go to the hospital when needed (Jon's Note: This is true - and you can stay on your meds. A good place to start is They can be there for moral support as well as emotional support. You may want to check it out just to see what they have to offer.
     Good luck and God bless you all. Nancy, who wishes everyone a happy new year! which brings better health for all.

Tom S, January 3, 2006 - Hi everyone, I almost spent Christmas day in the hospital but they sprung me after pumping 15 lbs of fluids out of me. Hey, they are getting faster at it. This time took 3 days as opposed to 7 days last time and 10 days the time before that.

Mary C, January 3, 2006 - Hi all, I think I am entering a CHF, decompensation episode. I have been taken off HCTZ and have been placed on Lasix at 20mg. I have SOB without fluid in my lungs and no asthma. They have increased my potassium supplement. I have a call in to my CHF specialist. My PCP is treating me right now. Any more advice to keep it mild or prevent is much welcomed. Also, my PCP is running a lot of blood tests.
Jon's note: The blood tests are good - possible causes of decompensation include thyroid dysfunction, electrolyte imbalance, dehydration (despite edema), and things like BNP are of course also checked.

Sharon L's January 3 reply to Giorg's December 31, 2006 - Hi Giorg et al, I learned the hard way 4 years ago, just after diagnosis, about anemia. You simply cannot afford to get anemic when you have CHF or it is bad news. I had hypochromic microcytic anemia and my heart started to beat very quickly and I felt short of breath. I was in the hospital 10 days. I now work hard to ensure I get enough red meat, spinach, chick peas and other sources of iron. I take the green iron pills, two a day, with orange juice. I also have low iron but don't know about your reading as we use different measurements in Canada I think.
     I just also wanted to mention that one of my new year's resolutions was to get off Splenda! I am a diabetic and it seemed to be a real godsend, but the side effects are bad for me. I really watch my sugar intake now, to ensure I stay in the optimum range for blood sugar, which is below 8.

Pat Y, January 6, 2007 - Hi Jon, When I sent this month's donation I asked for a receipt for 2006. I had also asked for one with the December donation. Don't send another. I received my receipt today in the mail. Thanks.
     I wish everyone would donate just a little each month. Because I donate about 16% of my gross salary I am unable to send more to you. Ten percent goes to my church with the other 6% to various other places including here. Maybe when one of the other areas no longer needs my money I can donate more. However, I do enjoy knowing that neglected/abused children are getting new "stuff" because of me.
     Thanks for keeping the site going. I often wonder how you manage when I know how I often feel. Have a stable 2007. Yours in Christ, Pat Y.

Jon, January 6, 2007 - Hi everyone, Well, if donations keep coming, we'll reach our target for the month but January is the month two of our major donors send their yearly donation. Thank you all for whatever you can send.
     I got too pooped the past few days trying to do some cooking and finalizing Linda's car purchase, which we brought home last night. One more payment every month and a huge sales tax bill too - goody. <g>
     Pat, every time I am ready to truly give up, Jesus finds a way to place a swift kick to my butt, reminding me how well off I am compared to many others, both health-wise and financially; and He's right, of course. Fibromyalgia has really slowed me down emotionally, often causing what I would call "malaise." I just have to keep slogging away at it, but that's life for many of us CHFers - we have to keep slogging away at it, and hope for more good days than bad. It can happen. ;-) Jon.

Lisa Z, January 6, 2007 - Hello all and happy new year, I hope this year finds you all maintaining decent health. My dad just got out of a 4-day stay in the hospital for CHF. In the hospital he was on IV Natrecor but it dropped his blood pressure too much, so he was changed to dopamine. He has lost 13 pounds since then and doesn't seem to be as short of breath. He never holds fluid in his ankles or wrists, just his abdomen. His belly was huge and very distended. He wears oxygen at night.
     I am traumatized because his EF has deteriorated further from 20% about a year ago to 15% this summer and now it is at 10%. Amazingly, he still drives and gets out a little. He is depressed (understandably so). They let him out of the hospital Saturday night and he just basically feels lousy.
     I am scared because I feel like I am losing him, and he turns 77 this Friday. His only living brother was just diagnosed with prostate cancer to boot, which is not helping his depression. He seems to be on the appropriate CHF meds cocktail (Coreg, furosemide, potassium, CoQ10, zaroxylyn, quinapril for high blood pressure and Coumadin (warfarin). Lately his blood pressure has been running very low, so Coreg and quinapril are being held. He is also diabetic, on insulin and has Irritable Bowel Syndrome/spastic colon issues. They gave him a drug for his bathroom troubles called Bentyl, which doesn't seem to agree with him.
     Now they started him on a small dose of Lexapro, an antidepressant. I guess I am just venting, I know that it is what it is, but I feel so helpless. He has an ICD/pacemaker combination device that he had implanted in 2001. Tuesday we are meeting with the EP doctors to see if he should get a biventricular pacemaker/ICD unit.
     Good grief! Does anyone have any thoughts or suggestions?

Mary C's January 6 reply to Jon's January 3, 2007 - Thanks for the note, Jon. You are like this angel to me who watches over me, when I get stuck. You reassure my spirit. My CHF doctor wants me to restrict fluid and salt intake, and let him know if my weight goes back to baseline. If not, I am to call him. Should I also restrict exercise? I am so tired. I sleep 12 to 14 hours a day. Ouch!
Jon's note: Try switching from endurance training (like walking) to balance and flexibility training as described at This is much easier when you're tired and will help keep you in shape for the meantime. Don't do all the exercises shown on that page - just pick your weakest areas and work on those.

Cheryl S, January 6, 2007 - Hi everybody, Thank you all for your great advice in December. I decided to take my continuing decompensation back to a university emergency room until I could get to my CHf specialist at Cleveland Clinic. It was a good decision as they temporarily stabilized me. My CHF doc at Cleveland increased my Toprol-XL to 37.5mg a day and started me on 20mg of torsemide. I lost 12 lbs in 6 days and started feeling quite a bit better. Except for one day after the new year, when my heart rate and blood pressure briefly shot up, both have been better.
     The latest beta-blocker increase though, has left me tired and sleepy all the time. I'm supposed to have an ICD put in January 16 at the clinic, but I am going to ask them to postpone it 2 weeks due to the fact that I have a skin infection near the surgery site that has been slow in healing. I will discuss this my CHF doc when I go there January 11.
     After my ICD is implanted, I am suppossed to go back for a 3-day tikosyn trial for my atrial fib. I would love to converse with anyone currently receiving heart failure treatment there and especially anyone who had an ICD or tikosyn (dofetilide) treatment there. Blessings to all in the new year.

William J's January 6, 2007 reply to Giorg's December 31, 2006 - Hi Giorg, Regarding your concern about your anemia reading. It is not uncommon for people with CHF to become anemic, but it should be dealt with. My hemoglobin level was down by more than 10% and I was told that my family doctor was the one I should visit only after I noticed the discrepancy on my blood test report. He prescribed three over the counter items: Iron (Slow-FE), vitamin B-12 and folic acid, which should hopefully increase my hemoglobin red blood cells.
     I would advise that whenever you have any tests done, you should ask for copies of the results. I had a complete metabolic and lipids test done and I was told over the phone by a nurse that everything was within limits. I had her send me copies of the blood tests and saw the hemoglobin results were low. I was told that such items are not handled by the cardiologist. I have every blood test I ever took over the past 15 years and they are a good items of measure over time. I also have copies of my echocardiograms and pacer clinic readings. At my last echocardiogram reading I was told that everything was the same, once again by the nurse. Upon receipt of the echo report I noticed that the technician had written in "severe pulmonary hypertension" which is a rare and fatal disease of the blood vessels of the lungs due to lack of oxygenated blood with a very high reading of 96mg. Fortunately they re-checked and it was a mistake by the technician.
     I get all test results before my cardiologist visit, type up my questions, and give the cardiologist a copy and go over everything at least with some knowledge. You have to learn as much about your disease and go over each test and ask questions! It is in your interest! Bud.
Jon's note: Interesting - I also take 2 typewritten lists and give one to my doctor (all my doctors). That way, I can't chicken out of asking a question at the last minute too.

William J's January 6 reply to Nancy S' January 3, 2006 - Hi Nancy, I am surprised that they wanted you to get your body in shape for the biventricular device implant. I have a BiV implant and was at the low point of my physical health when I had it implanted together with a defibrillator.
     The procedure itself is not considered major surgery, although getting the wire through the sinus node into the ventricle is fairly difficult. I am also surprised that it took 6 months to get it done. I am happy that together with medications and your BiV pacemaker, you seem to be doing very well. Bud.

Jon, January 9, 2007 - Hi all, It just hasn't been my month but after 17 hours of sleep yesterday, I feel a bit better. So here I go again, trying to get caught up. After posts, I still have about 50 e-mails to do. Jon.

Robert M, January 9, 2007 - Hi, I have developed an intolerance for ACE inhibitors. My face swells up and my tongue - angioedema. My cardiologist is going to try diovan in a week. Do ARBs pull as much freight as the ACE meds? Thank you.

Susan L's January 9 reply to Sarah K's January 3, 2007 - Hi Sarah, I've recently had a heart transplant too. I am glad to know someone like you is on the same boat with me. As you mentioned, unfortunately there is no such web site for heart transplant as Jon's web site for CHF. I've received a lot of support from a local support group, though. You probably can find out the support group information in your area at
     Have you asked your social worker about this? They probably know this best. Just like you, I love my new heart. I feel like my bright future is just in front of me. Susan.

Roger H's January 9 reply to Sharon L's January 3, 2007 - Hi, I just wondered why you are getting off Splenda. I am diabetic also and have used Splenda in everything for the last 5 years or so and have no problems with it.

Gwyn O's January 9 reply to Nancy S' January 3, 2007 - Hi Nancy, Thanks for the advice. This is all new to me, I feel as if my body is falling apart. I had a carotid ultrasound January 3rd but have not gotten the results back yet. No news is good news.
     Do you have pain in your legs when you walk or climb stairs? It is always worse when my breathing is worse. I'm not sure if this is a part of CHF or maybe I have arthritis, but the pain seems to be more nerve or muscle pain. I have trouble sleeping, I can't fall asleep or when I do I don't stay asleep. I think this is partly fear. My heart problem woke me up in the middle of the night and my first mini-stroke woke me up also. Of course I have to sleep elevated but I can get comfortable.
     I live alone so I guess I'm just scared. I have always been in control of my life and body. Now, everything is uncertain. It doesn't help in that I'm limited to what I can do to keep my mind off of the big picture. I love gardening and painting but I just don't have the energy anymore. My house is a mess and I cook very little. I used to go camping and fishing with my kids, now they go alone.
     I need to find other interests to replace the ones I had but right now my heart is just not in it. I guess I'm going through the "feeling sorry for myself" stage. I'm sorry to go off on you like that, I've actually had a good day. I hope you understand. You have really given me hope, maybe this is not an immediate death sentence. I guess I just have to take it one day at a time.
     At least my last test results were pretty good: Blood pressure normal, cholesterol good, sugar was okay, still anemic but it's not a concern right now. The doctors are focusing on the bruit in my cartoid artery and the mini-stroke I had. I hope I don't have to have another surgery.

Val R's January 9 reply to Lowell P's January 3, 2007 - Hi Lowell, My arms tend to go to sleep and ironically, it wakes me up! I have found it happens on whichever arm has weight on it. I am a side sleeper. I would be surprised to learn that anyone who sleeps on the back has this problem.

Linda K's January 9 reply to Jon's January 3, 2007 - Hi Jon, I'm intrigued by your comment to Mary about the possibility of having dehydration and edema at the same time. Based on my symptoms, I'd be willing to swear I've got fluid but the tests say the opposite. They're sending me to a gastrointestinal doctor on Wednesday, but if they don't find anything and the symptoms persist, they're going to do another right heart cath.
     I'm getting mildly nauseous almost every time I eat an ordinary-sized meal, and occassionally I'm getting some pretty nasty bloating, along with having to go back to propping myself up at night to breathe comfortably. I'm also sleeping a lot and having a hard time getting going in the morning.
Jon's note: Dehydration occurs when the body's blood volume is too low due to lack of water, such as when athletes heavily sweat without drinking enough. Edema occurs when fluid accumulates where it shouldn't - in the abdominal wall, spaces between lung cells, etc. It's actually common to have both, especially when diuretic therapy is of the wrong type. That's why CHFers with stomach edema should take torsemide, not Lasix.

Jennifer S, January 9, 2007 - Hi, I just found this site. I am always looking around the Internet for some good information in terms I can understand. I am 34 years old. About 4 months ago I was diagnosed with CHF, CM, PVCs, and Long QT Syndrome - all a big shock. About a year ago, I was diagnosed with asthma. I took asthma meds for about a year and thought it was doing the trick. Ha! It just made me feel better while my heart function deteriorated. When I first went to the hospital, my EF was 25%. Six weeks ago, I had an ICD put in.
     The CM, CHF, and I guess the PVCs were caused by a virus of some sort. The QT thing could be hereditary. My mom died last year with no warning at all. My kids were tested last week and the pediatric cardiologist says everything looks fine for them. I am up to walking for about an hour almost every day. Sundays and Wednesdays are hard to get to the gym with my schedule, but I get to go just about every other day.
     I am looking forward to reading and contributing here! Thanks. Jennifer.

Tony M, January 9, 2007 - Hi, I had a great holiday and greetings from old friends this last month but I am worried about Jon and would like to say that for all others who also read this site. I know he has seemed ironclad to us all but lately I sense he's really feeling bad and hopefully he will get out of his rut soon. Take care Jon.
     I also last said I found a mask that would let me sleep on my CPAP after going 5 months with 5 other ill-fitting masks and read here about the nasal pillows and found it to work great. However I was told I had a very severe case of sleep apnea and it would take a year to get to feeling great so for 3 months now I have slept like a baby but the sleep debt that they were talking about kept me knocked out feeling all day long.
     After having insomnia for two years I could hardly gripe about finally sleeping. Last week I called and went back in and the doctor put me on Provigil and said my back log of sleep debt was large and I could have a accident driving.
     I have had multiple surgeries on everything but I would have to say that sleep deprivation and insomnia have been the worst to deal with. Take care good health to all. Tony.

Lisa Z, January 11, 2007 - Hi all, Another update on my dad. We spent his 77th birthday last Friday in the emergency room. Dad was so weak and his blood pressure was running really, really low at 77 over 43; he was nauseous with no appetite, etc. He just refused to go in the ambulance so I had to leave work and go take him. While we at the emergency room his pacemaker/ICD made the heart monitors go all whacky and all these nurses came flying into the room and kicked me and my mom out, telling us he was in ventricular tachycardia!
     Meanwhile, he had just been sitting there joking with us. I was a total wreck. He was not in cardiac arrest but the monitors looked bad. They said the EKG itself was not that bad. Basically all his blood work looked pretty good and his chest x-ray, etc,..., had not changed much from the previous week.
     To make a long story short they admitted him and he stayed one night but he felt worse the next day when he was released and has been in bed ever since. He is too weak to go to the EP doctor so we had to change the appointment to next Tuesday to see about a biventricular pacemaker.
     I am just so frustrated because there seems to be so very little that I can do. I am not dealing with this whole situation very well and am so thankful for this site and being able to vent here and get some support. Ion't even know what to do right now aside from have faith and trust in God.

Nancy S' January 11 reply to Gwen O's January 9, 2007 - Hi Gwen, I do have leg and hip pain when walking up and down stairs. As a matter of fact, I'm having back surgery on February 23 so I can use all the prayers I can get. I have rheumatoid arthritis so can't really tell you what is causing your pain. I have several places along my spine that have degenerative discs but my main problem now is along my lower spine, which is causing the spurs and bad discs to compress nerves and push against my sciatic nerve. I'm having numbness along both legs and have lost a lot of muscle in both legs.
     You should probably go to your PCP and see if you need a nuerologist and some testing. If you are planning on doing that, I'd strongly advise doing it before you get any kind of pacemaker since you can have an MRI before but not after pacemaker implant. It is painless and trust me, a mylegram is not. Mine was unusually hard due to spinal stenosis in several places.
     A lot of us here have problems with sleeping and others also have leg pain so maybe they can speak on what theirs is like. Remember, there are always people here willing and ready to listen and try to help you through this. I can only imagine what you feel like living alone but God is there to see you thru so you're never really alone. Nancy.

Gene G's January 11 reply to Jon's January 9, 2007 - Hi Jon, When I feel dehydrated (a little dizzy for a bit when first standing up, cramping in calves, chapped lips), most often my blood pressure is normal. Does this make sense physiologically? It would seem that low blood volume would make one hypotensive. Thanks, Gene.
Jon's note: The symptoms you describe aren't necessarily dehydration but if they are, your response may be different from the next guy. That's one lesson I've learned here for certain.

Lowell P, January 12, 2007 - Hi, Is there a generic on the market yet for Avapro or Toprol-XL?
Jon's note: Generic Toprol-XL is now available but only at 25mg. Higher doses will soon follow.

Robert H, January 13, 2007 - Hi all, I had an ICD/pacemaker implanted in March of 2007. I have gained 100 lbs since then. Has anyone gained a lot of weight for no reason because my eating habits haven't changed, just my weight?

Holly M's January 13 reply to Sarah K's January 3, 2007 - Hi Sarah, I know I'm not the emotional support you are looking for but I thought maybe you might be the one I was looking for. I am on the transplant list going on 3 months on the 20th of this month. How long did you wait?
     This waiting is getting so hard and I don't know how to not let it consume me. We got called once on December 11th, had all the IVs going, talked with the surgeon, everything looked great and bamm! - no go and we were sent home. It took us a week to recover! My story is not the usual slow heart disease that destroys the heart or I was born with a problem. I had a cath done 2 years ago and my left main artery was dissected. It took 4 hours to get me into surgery for a double bypass and I had 3 heart attacks during that time. Twice, I had to be shocked and the on last one, I went out as they were taking me into surgery.
     Five weeks later both grafts shut down and I went into cardiogenic shock. I had another emergency cath and the hardest thing I think I've done through this whole ordeal was to get on that table again! Three stents and a cardioversion later, I am left with 30% of my left ventricle scarred, a 20% EF, and I can't tolerate any heart meds since they drop my blood pressure to levels that are to dangerously low (55/47). I can only walk about 50 to 75 steps before I have to rest because I'm SOB. I have chest pain almost daily and really it doesn't even throw me anymore. I take a nitro and lie down.
     I was healthy one day and in severe heart failure the next day. I'm in the hospital almost every 6 to 8 weeks in CHF. The docs aren't sure what to do with me since I just don't respond to meds like most people. I am becoming diuretic resistant and they are concerned with the amount I have to take to just maintain and even then the fluid comes back. My electrolytes are always off so I'm nauseous and lightheaded most of the time. So there is my sob story.
     As each day passes, I'm starting to think maybe I'll never be called again. I know I should look at the positives: I am at home and not waiting in the hospital (status 2), I can still take my own showers although it does me in for a few hours afterward, I can be with my family, there are others that I know are much worse than me. Somehow knowing that doesn't seem to ease the fear. I'm scared I won't make it through the surgery, I'm scared I won't tolerate the drugs I need afterward because of my resistance to the ones I need now and can't take, I'm petrified of waking up on a ventilator again which was the worst experience I remember from the last surgery.
     How did you cope with all the feelings while waiting? How are you now? No one seems to understand unless they've been there. My husband is a saint and my rock, but he says I have stop thinking about this 24/7. How do I do that? Please, any advice, thoughts, comments, anything would help!
     Thanks for listening. I hope you find a site that can help you. I've been looking too and there isn't another site like anywhere! If you find one, let me know and vice versa. Holly M in Cleveland, Ohio.

Janine A, January 13, 2007 - Hi, My mother is in the final stages of life now due to complications from CHF. She was diagnosed nearly 10 years ago and has had the normal roller coaster issues that have had her in and out of the hospital due to swelling, etc. We have finally called in hospice because the doctor basically told my mother that they can do nothing more for her, that the meds are no longer working and her kidneys are failing. She has hand tremors, etc.
     My thing is that I am out of the state. The rest of my family is with her, but they don't seem to be very informed. My mom just returned from her visit where she was told she was going home to die yesterday, and the hospice nurse came for the first time yesterday. From what I can see by some online sites, the symptoms with her kidneys means she will have less than 1-1/2 months at most to survive. However, the hospice nurse is telling her that she has seen patients in my mom's condition survive 3 years.
     My mom says she has 6 months. Has anyone had any experience with the kidney complications and end stages of this disease? I know each case is different, but there has to be some truth to the kidney issue in that she can't have long because she will fill up with waste and toxins.
     I want honest answers. I know she is dying. I know it won't be long, but I think it will be much sooner than she thinks.

Roger G, January 13, 2007 - Hi All, I just wanted to drop a note about my last few months. I had been taking furosemide for 9 years with the dose increasing from 20mg to 160mg daily over those 9 years. One day in October I was ready to call 911 and have them take me in to the hospital. I really thought it was getting near.
     The next day I took a look through this site again and pondered the options to furosemide. It was the only med I was taking that needed an increasing dose and never seemed to do what it was supposed to do all the time. I called my doctor and asked that he switch me to torsemide. Three days after I switched, I felt great and have ever since. It seems that I was building an allergy to furosemide and the worse the allergy became, the less it worked and the more they gave me - a vicious circle that would have ended up in a spiral into the ground. Best wishes to you all in 2007 and beyond!

Tom S' January 15 reply to Robert H's January 13, 2007 - Wow, Robert! One hundred pounds. Is it flab or is it fluid? Within 2 weeks of my ICD/pacemaker implant on April 28, 2007 I lost nearly 40 lbs of fluid weight and have continued a downward spiral. I have dropped from 376 down to 326 lbs with no real changes in diet or exercise. I have to add I cannot do any exercising because my EF is somewhere in the neighborhood of 10% to 15% measured by cath. I'm lucky if I can hold a phone to my ear for more than 5 minutes, let alone exercise.
     I would definitely say you have some other metabolic switch that swung into action and a weight gain like that certainly should turn your cardiologist's head into overdrive to find out why. Good luck.

Cindy W, January 15, 2007 - Hi, Has anyone had any experience with cheek swelling? My mother (85 years old, I have mentioned her here several times) since Christmas has developed the most peculiar look to her face. Her cheeks are puffed up, but firm feeling, and so is the front of her throat. We have a doctor's appointment Tuesday the 17th, but I am curious as to what this could be. She has CHF, 2 leaking valves, and atrial fibrillation. Her cardiologist says there are no further surgical options for her, and I am aware that she is in end stage CHF but the peculiar look her face has taken on has us very puzzled.
Jon's note: Two things come immediately to mind - angioedema from an ACE inhibitor or ARB - this is very dangerous as the inside of her throat could swell, closing her airway. Second, if she takes prednisone, a "moon face" is very common. I suggest an ER visit today.

Mary C's January 15 reply to Roger G's January 13, 2007 - Hi, I am working on them switching me. I have gone from HCTZ to Lasix. Now after I have a 7 lb weight gain and Lasix got it off in 7 days, it will be hard to convince them. However, I am working on it. At least one of my docs listens.
Jon's note: Seven pound of extra fluid would come off in one day on torsemide - it should never take a week to remove 7 pounds of edema-fluid.

Robert M, January 15, 2007 - Hi, My father is 88 years old, has advanced Alzheimer's disease, has had a stroke, has mini-strokes and requires full-time care from my family. Now, he is showing signs of more advanced congestive heart failure. He hates hospitals, doesn't care that his feet and hands are swelling up or that he bruises easily. He can barely walk with a walker and he sleeps most of the time. We've noticed the swelling getting worse and he gets short of breath just from being bathed.
     Father has so many medical problems and now the congestive heart failure. He doesn't like going to the doctor. It upsets him immensely. In your opinion, should we ask the doctor to treat the heart failure, which could land him in a hospital or nursing home and maybe prolong his life a couple of months? Or should we make him as comfortable as possible and let nature run its course?
Jon's note: Please take this as it is meant - an honest answer. You are asking the wrong people. It's his life. If he has any clear mental periods, ask him. This will be painful for you but if you love him, do this and then respect his wishes either way. I understand the difficulty of picking the moment - my mom is 75 with Alzheimer's and CHF. This is how we deal with her illness.

Jerry C, January 15, 2007 - Hi all, What type of medical doctor would be an expert on costochrondritis?
Jon's note: I've had it, bad. It is usually handled by a rheumatologist or anesthesiologist since nerve blocks are the only effective therapy.

Tonya A, January 15, 2007 - Hi, Can the drug prevacid cause problems with Coreg? I think all the strange new symptoms are from the new drug. Has anyone had this problem?

Sue R, January 15, 2007 - Hi all, My father died of CHF. He was sick from about 5 years with CHF. He was implanted with the Heartmate 1 as a bridge to transplant. His VAD team thought he would be able to lose weight with the Heartmate 1 and get a transplant in no time. Well, he wound up having 2 strokes while implanted, which made it harder for him to try to lose weight. He seemed to be in the hospital more with the VAD then without it. Then the VAD started making grinding sounds and they had to rush him to surgery to "change it out." They said he wore it out too fast because of his weight. He was around 240 lbs.
     He had it for 11 months before it started breaking down. I was under the understanding that 11 months is pretty long for the Heartmate 1. So they then implanted the Heartmate 2 in him. He constantly complained of pain in his stomach and then started peeing brown crystals. The hospital said it was a kidney infection. He passed away within a week of when he started urinating brown crystals only 2 months after receiving the Heartmate 2. They said he had sepsis.
     I've learned from my own problems that his pain and color and crystal-like pee could have been a sign that his spleen was ruptured. I think it may have been ruptured during the second surgery. He also needed about 6 transfusions after surgery. Has anyone had a simular situation? Any doctors that can help? I feel so lost!

Jon's January 15 reply to Sue R's January 15, 2007 - Hi, I can't speak to the spleen issue. However, when he had the Heartmate one implanted, LVADs were a last resort meant only to keep CHFers alive until they could get a heart transplant. Strokes, infections, and device failures were not uncommon. LVADs are still so risky they are only considered for a very small group of patients. I must say that in my non-doctorly opinion, using the devices available at the time, your dad lasted a long time that otherwise he would not have had. I am sorry. Jon.

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, 2005, 2006, 2007 Jon C.

Talk to Jon Site Index