The paperwork never ends The Archives
Loved Ones - December, 2001 Archive Index

Dee 12-4     can the heart be rebuilt?
Vivian G 12-4     what makes his tongue bright red? & more
Bonz 12-4     what goes on with these doctors?
Patricia 12-4     intro, how bad might it be?
Davida S' 12-5 reply to Bonz' 12-4     Disability
Davida S' 12-5 reply to Patricia's 12-4     tests & more
Brenda 12-5     update, prayer request
Susan 12-6     has Coreg caused hair loss to anyone?
Leslie M 12-7     how can I lower drug costs?
Anita Silvey's 12-10 reply to Jon's 11-21     update on Phil & more
Connie 12-10     my husband Jack died
Brenda N 12-10     has anyone been through this?
Lolly 12-10     seek advice on monitoring systems
Davida S' 12-11 reply to Brenda N's 12-10     fever & infection experience
Barbara 12-11     seek others' ICD/arrhythmia experience
Sandy 12-11     saw PCP, not very happy
Brenda N's 12-11 reply to Davida S' 12-11     update, thanks & more
Brenda N 12-13     update, very hard decisions
Maria's 12-13 reply to Brenda N's 12-13     a possibility, my experience
Michaels' 12-14 reply to Barbara's 12-11     hang in there, my experience
Barbara's 12-17 reply to Michaels' 12-14     thanks, concerns
Jon's 12-17 reply to Barbara's 12-17     one possibility
Jeannie 12-17     is sudden death common?
Jon's 12-17 reply to Jeannie's 12-17     sudden cardiac death
Bonz' 12-17 reply to Davida S' 12-5     clarification
Brenda N's 12-17 reply to Maria's 12-13     thanks and an update
Susan B 12-17     venting
Maria's 12-18 reply to Brenda N's 12-17     it can be a long hard road
Davida S' 12-18 reply to Bonz' 12-17     maybe face the doctor to get his story
Barbara H 12-18     if not fluid in lungs, what is it?
Lisa 12-18     does smoking meth-amphetamine cause CHF?
Jon's 12-18 reply to Lisa's 12-18     amphetamines and CHF
Mike W's 12-21 reply to Lisa's 12-18     amphetamines and CHF
Rick 12-22     what do we ask dad's doc for?
Jon's 12-22 reply to Rick's 12-22     an echo is called for
Rick's 12-22 reply to Bonz' 12-4     SSD & LTD tips
Davida S' 12-24 reply to Rick's 12-22     see a cardiologist
Deb 12-26     need advice, experiences - what now?
Susan B 12-27     happy update
Judy H's 12-27 reply to Deb's 12-26     similar situation experience
Janet 12-28     heart jacket? venting & more
Jon's 12-28 reply to Janet's 12-28     heart jacket & more

Dee, December 4, 2001 - Hello, This is my first time here. After reading all the posts I found nothing that came close to what we are seeking. Mom is a CHF patient. Her heart barely beats on its own. The heart muscle is so weak. Does anyone know if it's possible to rebuild the heart muscle itself via any means? She is diabetic and just had her right leg/foot amputated due to infection. Although Mom is recovering nicely from that surgery, we still need to keep in mind that her heart is not able to function properly. Any help will be greatly appreciated. Thank you in advance, Dee.

Vivian G, December 4, 2001 - Hi, My husband had a bypass surgery May, 2000. In the last month he has developed a bright cherry red tongue. He says it doesn't hurt but it must be a symptom of something. His worst complication now is a bad knee, which hinders his exercise. I have been giving him glucosamine and Tylenol in addition to his heart meds. His meds are metoprolol, Cozaar, Lanoxin, magnesium, potassium, Lasix, spironolactone, Coumadin, CoQ10, and B vitamins, vitamin A and C, and E. Do any of you know what would cause his bright red tongue? He has had loss of taste also since his bypass surgery. Any help will be appreciated.

Bonz, December 4, 2001 - Hi, It's been awhile. I'm stopping back in for a question. What do you think of this? Paul's heart stopped several months back. He was hospitalized for about 10 days. In that time his PCP came to see him but his cardiologist never came to check on him. The following month the same cardiologist sent papers in to Disability that Paul was fine and could go back to work and had not yet seen Paul. We changed cardiologists and the new one sent in papers to Disability that Paul is disabled and unable to work a couple of months ago. Just a couple of weeks ago, this new cardiologist sent information to Paul's long term disability insurance carrier, personal policy, that he is not disabled. Any ideas what's going on?

Patricia, December 4, 2001 - Hello, I just found your group and would like to join in since I have some questions that maybe you can answer for me. My dad is 78 and has had arthritis of the hips for some years, so he is not very active. He also got type 2 diabetes a few years ago (treated with a tablet and diet only). A few months ago he noticed that his feet and legs were swelling in the day, not when he just got up, then they were okay. He mentioned this to his doctor, who said that because my dad was inactive, he should just put his feet up. Then a few weeks ago he was prescribed Xalatan eye drops and one of the possible side effects was wheezing and breathlessness. My dad has had heart montitors and lung checks in the past, and has always had a strong heart, although the beat was sometimes irregular and he was given one digoxin per day and also one water tablet. This was a few years ago.
     Anyway, the past few weeks as stated above he has had problems with feeling breathless when exerting himself. We were thinking it was a coincidence and that this was a side effect of these eye drops and thought it might be connected. Anyway, he went off his food and last week mum called the doctor. He said that his heart beat was too fast and he had fluid round his lungs and put him on an extra digoxin and an extra furosemide and said he would call one week later.
     However, on Friday, 3 days before his next visit, my brothers decided dad was no better. Another doctor called and said that although dad may not feel better, his heart beat was much slower and the fluid was moving down, so actually things were improving. I had looked on the Internet and I went outside with the doctor and said, "Is it congestive heart failure?" and he said yes. I asked if it was fatal in this case and he said, "No, your dad just has to turn the corner and it is controllable with drugs." So, we felt a lot better after that. Dad is not used to being in bed and is feeling very depressed and cannot walk a few steps without it really taking it out of him. He is basically frightened and thinks it may be something else.
     When the first doctor came back today after one week, he said that dad's condition was improving. He could send him into the hospital for tests but that was up to my father. Dad said he would rather stay at home and the doctor gave him some co-amoxiclav (antibiotic) as he sounded a bit chesty, and some sleeping tablets, and asked dad to walk into the lounge from the bedroom. With the help of my mother he made it and did quite well. A few days ago he probably wouldn't have been able to do that. All this is new to us because dad has never had problems like this before. Do you think that the doctor was being optimistic when he said that it could be controlled by medication, or could it be something more serious?
     We are all naturally very worried. Thank you for listening to me. I do not know who else to ask since I asked the doctor and he gave his reply, but of course we are wondering if it is more complicated than he made it sound and of course dad thinks the end has come! Thanks again and we would like to hear from anybody who has the time to reply. Best wishes, Patricia (UK).

Davida S' December 5 reply to Bonz' December 4, 2001 - Hi Bonz, What are you determing your husband's disability on? It sounds like it's a matter of interpretation. There are guidelines to assist SSD in making a ruling. How does your husband's case fall within these guidelines? Is he unable to work any job at all due to his health? Is he listed on the transplant list? I am sure there's more to it than these questions but the biggest one is about his ability not to work at all. Also you should talk with his doctor and see what made him decide your husband was no longer disabled. The doctor is the best person in assisting you in getting the SSD. We knew right away Dan's doctor was adament about getting Dan on SSD. Every note from day one indicated "permanently disabled." It scared us when we read the notes the first few days but the doctor said he had to give the worst case scenario right away so that SSD would not give us any problems because Dan was a long way from being able to work.

Davida S' December 5 reply to Patricia's December 4, 2001 - Hi Brenda, It's hard to say about the doctor's optimism. If Dad is really concerned he should take the doctor up on his offer to run some tests. If it's something more and it could be, only diagnostic tests will say for sure. Even the simplest of them, an echo, is worth a trip to the doctor's office or hospital. Reduction in symptoms with the help of meds doesn't always equal improvement, it could also mean stability. A man his age who has relatively good health should protect it with the necessary follow-up tests for peace of mind.

Brenda, December 5, 2001 - Hi, This is an update. My mom remains in MICU. We now worry about a fever that comes and goes, varying from 102 to just under 105 degrees F. The doctors are baffled. All the cultures are negative. Scans and ultrasounds from head to toe are negative. Even the infectious disease doc can't seem to find what is wrong; No infection he says. We're waiting for results of a test done on her brain waves. Her heart is beating well and her valves are working well. Her blood pressure is good. She is still on a ventilator and she is heavily sedated. She hasn't spoken in a week because of that. Please continue to lift us up in prayer. Thank you!

Susan, December 6, 2001 - Hi, My husband has been experiencing hair loss since taking Coreg. Has anyone else had this problem or heard anything about it? Thanks, Susan.

Leslie M, December 7, 2001 - Hi, My husband's CHF prescription drugs are not covered by Medicare and we are trying to lower the costs. Does anyone have any suggestions? I have heard that you can order drugs from Canadian pharmacies.

Anita Silvey's December 10 reply to Jon's November 21, 2001 - Hi Jon and fellow caregivers, Thanks for your advice on what to do about Phil's CHF problem. Phil went to his private CHF specialist and he put Phil in the hospital to get some fluid off his lungs. He thinks the breathing problem is mostly due to his lungs getting worse because of his emphysema and other lung problems but not due to his CHF getting worse. He did have acute bronchitis so he went on more antibiotics but no more steroids. Phil seems to be getting better and only had to stay in the hospital overnight. Also, the doctor did not put him on the IV sodium chloride because he said it does cause fluid retention like I have read here on the forum.
     If anyone writes to Phil or me, please write for the subject something about CHF because Phil won't let me open any mail from an address we don't know. ;-) I am going to try to be more active on this side of the forum. Thanks again, Anita.

Connie, December 10, 2001 - Hi, I hope this season finds all of you doing well. I am posting to say that I lost my husband Jack on December 1st to a viral infection in his new heart. He lived the last 6 months to the fullest and had made his peace with God. He will be truly missed. Take care of your loved ones and God bless you, Connie Miller Weaver.

Brenda N, December 10, 2001 - Hi, My mom had surgery on November 20. She is still in ICU and since then she has been running a fever, up to 105° at times. Of course, they are treating her with meds to help reduce her fever but haven't found the source causing the fever. Her surgery was to replace flapettes on her aortic valve, repair her mitral valve and repair a bypass graft. The cultures being done show no infection. They've scanned her from head to toe, inside and out. Neither her CHF specialist nor the infectious disease doc know what is wrong. She's also having a very rapid heart beat (130 to 180 beats per minute), which is being treated with drugs, but today the drugs seem to be giving little help.
     The areas repaired are working fine. They say her heart is getting stronger and they're trying to get her off the ventilator (breathing machine). I know none of this sounds good. I was just wondering if anyone out there has been through this and can pass on some experiences or insights. Thanks.

Lolly, December 10, 2001 - Hi, My mother had triple bypass 3 months ago but has recently been diagnosed with CHF. She is 80 years old and lives alone (by choice). She is very independent. Five siblings live one to 6 hours from her and we are at a loss as to how to handle emergencies for her. She began feeling sick and walked outside to yell for help when the neighbor spotted her and called 911. She was suffering from CHF and was completely disoriented. We have suggested that she change living arrangements but insists on maintaining her independence. We wondered about a monitoring system to use in case she passes out again and no one is around. Any suggestions?

Anita S' December 11 reply to Connie's December 10, 2001 - Hi, Phil and I are very sorry to hear about Jack's death. My brother died last year from mesothelioma. I think there can't be any greater pain than the loss of a loved one. Our thoughts and prayers are with you.

Davida S' December 11 reply to Brenda N's December 10, 2001 - Hi Brenda, I know high fevers can increase heart rate tremendously. I don't know if that is what is sending her heart rate that high, though. When they didn't know what was wrong with my husband, it was scary but he had a viral infection and pneumonia. His heart rate got to 151 at its highest. After they gained control of the fever and pumped him full of antibiotics around the clock it slowly came down. When we left the hospital it was 88 beats per minute, which was high still for him but by then the virus had attacked his heart muscle, which encouraged the CHF.
     Prayer is my only suggestion. It is a mystery that only God is fully aware of. Pray that He may materialize this mystery to the doctors. Talk to your mom and try to keep her spirits up during this challenge. Take care.

Barbara, December 11, 2001 - Hi, I have been reading this forum for some time now and although it's my husband who has DCM/CHF, I was hoping someone will have some input. My husband was first diagnosed in 1982 when he was 27 years old. The cardiologist said his heart was scarred, after doing an angiogram (cath), echo, and another test. He told us the scarring could have been caused from either a silent heart attack or a virus. To make a long story short, all went well until August of 1999 when my husband was hospitalized with CHF.
     The medications he was taking at that time were Captopril, Aldactone (spironolactone), and Bumex. His EF was 25% when measured with echo and cath. By October of 2000 he seemed to be getting worse and could no longer do a fraction of the things he used to do. Needless to say, he did have to retire. He had a lot of chest pain off and on, and the cardiologist kept telling him it was his chest wall. By March of 2001 he knew something was not right. He had to be taken to the emergency room and when they put him on a heart moniter the alarms went off because he was in V-tach. After an EPS, the EP doc said he was high risk for SCD because he was able to induce the arrhythmias. My husband was implanted with an ICD the following day. The EP cardiologist said arrhythmias can be a complication of DCM.
     In June he had his first shock. In August he had another shock. By Labor Day his arrhythmia worsened and he was shocked twice back to back. A week later he was shocked 3 times, only this time he passed out with another trip to the hospital. The following week he was zapped again 3 times and passed out again. Along with these episodes he was also having CHF problems as well. The first week of October the same thing happened. On October 9 he had an ablation and a week later he fired off one time.
      All was well from October 13 to November 26 as far as his ICD shocking him. However he was tired and having trouble sleeping. He ended up in the hospital on November 27 because of respiratory tract infection, V-tach, and he had received another shock from his ICD. He came home December 1, 2001.That very night his ICD fired twice and the next day fired again. On December 3 he got 10 shocks in 3 hours, meaning another trip to the hospital. On December 4, 5, and 6, he got 2 shocks each day. December 7 was even worse. He got a single shock which was not effective and his ICD fired 6 times back to back. At that point his ICD will not deliver any more therapy for 24 hours and he remained in V-tach for 2 1/2 hours before his doctor shocked him for the 8th time that day.
     With his heart already weak and the complications of arrhythmias, does anyone know if the rapid heart rate can do any further damage to his heart muscle? The doc is not really answering that question at this point. His ICD fired again yesterday (12/9). His last echo showed some decompensation but his cardiolgist thinks his CHF is compensated at this time. My husband will be having another ablation this week since any activity (like sitting up) puts him into V-tach. He is still in the hospital of course. We know he will need to be put on the heart transplant list very soon. He is on all the right CHF meds, as well as meds for arrhythmias.
     Has anyone else suffered with these same problems. Interrogating the ICD showed that of the total therapies, 17 were for V-fib, the rest for V-tach. He has been in the hospital 8 times since September of this year, either from CHF or multiple discharges from his ICD or both. Thanks for any input.

Sandy, December 11, 2001 - Hi, With all my worrying Bill finally had his appointment with his PCP today and needless to say when we left I was mad and Bill was satisfied. I went in with all the knowledge I had gained on this site. Bill said the doctor seemed impressed, I say I put him slightly on the spot. Bill was diagnosed with DCM 3 years ago. They now say he has CHF and his PCP just realized Bill was not seeing a cardiologist.
     He scheduled him an appointment with the cardiologist (told me they all specialized in CHF) but that is not until January 29, 2002. He also said he needs to see an ENT for his sinus problems and thought a lot of his breathing problems could be related to sleep apnea so has to see that specialist also. I asked about an oxygen test to test levels during the day and he said that wasn't necessary unless you had emphysema and that they are more concerned with oxygen levels at night.
     I guess I was expecting him to say everything was fine or at least seem more concerned. Bill has good days and bad when it comes to breathing, sweats a lot even though he has no fever, and is constantly tired and takes naps at night. I guess I just have to keep track of everything and keep going with him to the doctors. Thanks for letting me sound off, Sandy.

Brenda N's December 11 reply to Davida S' December 11, 2001 - Hi, Thanks for sharing your expriences with me. Mom's fever has been consistantly 101 to 103. They still can't find the source causing the fever. Today we are told she is having kidney trouble. She started having bowel movements and today they discovered blood in her stool. They will be doing tests (scopes top and bottom) to find out why. Tomorrow evening the doctor will meet with us and discuss what's going on and what treatment to do.
     You know, mom hasn't spoken to us in 2 weeks. Some days, in spite of her complications she looks good and you just know that at any moment she will open her eyes, recognize you and smile. The next day or even hour something new is hindering her recovery. I do talk to mom and I do encourage her. This is a site for caregivers to share what they're experiencing in the way of medical insight they have found beneficial or the feelings they are experiencing. I hope you all take advantage and share what you're going through. I know we'll all get through it but to know that others out there share your pain and knowing what to expect, if you really can, I think helps. It helps me being able to talk about whatme and my mom are going through. Thanks for being here.

Brenda N, December 13, 2001 - Hi, Today the doctor told us that there is nothing else they can do for mom - not a good thing and not necessarily bad either. She still can't breathe on her own and she's not very responsive but she can't stay at the hospital so dad has to make a decision on whether to let them do a tracheotomy and place her in a rehabilitation facility which would help wean her or just remove the ventilator. There are no signs that she won't recover but yet the decision is tough. He always asks whether surgery was the right thing to do. Thanks for listening.

Maria's December 13 reply to Brenda N's December 13, 2001 - Dear Brenda, I just read an update on one of the artificial heart implant cases and his high fevers are being attributed to an "unusual reaction to medication." It might be worth asking the docs about. While everyone's situation is different, my husband had a trach when he went to rehab and they weaned him off it there. He went from ICU directly to Rehab. Do keep talking with your mom. Even though she isn't responding, I know from talking to Kevin once he was out of the hospital that it really helps to keep them calm. All the best.

Michael's December 14 reply to Barbara's December 11, 2001 - Hello Barbara, I was diagnosed with CHF the first part of July with an EF of 20%. The 21st of July my pulse had dropped to 39 bpm. I went to the hospital where I was told that I was in danger of sudden death because of ventricular arrhythmia. I had the choice of staying there or going home to die. They told me that they would try to stabilize my heart with a med called amiodarone (Cordarone) and if it stabilized they would implant an ICD. I made it and so far I have not had one shock. I went for my Medtronic check-up last week. I don't know if this will help your husband or not, so ask your doctor. I think the only reason I am still alive (my cardiologist held no hope for me the last time I was hospitalized) is that a higher power isn't through with me yet. Please hang in there, they are dicovering new treatments.

Barbara's December 17 reply to Michael's December 14, 2001 - Hi, Thanks for the reply. My husband has been on amiodarone for several months, however he also had to be started on Mexilitine, which had to be stopped. Neither lidocaine nor Rythmol worked and were stopped as well. My husband also has a Medtronic ICD. He has had 2 ablations, neither of which corrected the arrhythmias, because he has so many and they are so fast they cannot be ablated (they are in his left ventricle). He's had the procedure done at two differant hospitals with different types of mapping systems. His heart rate will go from 62bpm to 170bpm just standing up. His rate has even gone up to 230bpm. The ICD has saved his life more than once and we are very grateful for that. It's the frequency of the shocks that are hard.
     I'm just very concerned that every time he goes into a V-tach or V-fib episode it will cause further damage to his already weakened heart. His doctor finally told me that if it's just a few seconds it will not cause any further damage. However if it last for hours then it could cause more problems. We are dealing with multiple problems of the heart. One of my other concerns is the stress my husband goes through every time he has these zap storms.

Jon's December 17 reply to Barbara's December 17, 2001 - Hi Barbara, Have you gone straight to Medtronic and talked to one of their ICD/pacer reps who are involved with actual implant? They may have insights that even doctors don't have because the reps see dozens of doctors deal with hundreds of patients in many different ways concerning many different difficulties. Jon.

Jeannie, December 17, 2001 - Hi, My mother was diagnosed with CHF in June of 2001. She had a heart attack 9 years ago and had angioplasty to unblock her arteries. I heard something about CHF that really bothers me. Can anyone tell me, is it true that people with CHF can drop dead at any time? I heard this from a few different people and my poor mom is afraid she is going to drop dead at the grocery store. I know this is a strange question but it is a real concern, as I've heard this from a few different sources. She has such shortness of breath it's scary and we are very worried. She is seeing a doctor regularly who tells her to live her life, do what she can tolerate, because there is not much they can do besides medication. Thank you for any info you can give me.

Jon's December 17 reply to Jeannie's December 17, 2001 - Hi Jeannie, Yes it is true but you have to put it in perspective to see how it affects you personally as a CHFer. In the early 1990s the risk of a CHFer dying by SCD was as high as 40%. However, now the risk is much lower. That's because of all the treatments to prevent sustained heart damage after diagnosis, and to reverse as much as possible the heart enlargement that leads to SCD. CHFers with severe ischemic heart disease (blocked arteries) have higher risk than other CHFers but even their risk is much lower than it would have been 10 years ago. Tell her that her doc is right - get on with life, she's not dead yet! Jon.

Bonz' December 17 reply to Davida S' December 5, 2001 - Hi, Maybe I didn't write clearly. Paul has been on SSD for 4 years. He is still on SSD. This is a disability policy he purchased through his work. They are the ones questioning his disability. Yes, he has been on the transplant list but will not allow them to do it. He has CHF, cardiomyopathy, palpitations, sleep apnea, diabetes, chronic obstructive pulmonary disease, GERD, high blood pressure, and atrial fib. He has the CPAP, blacks out regularly, loses periods of time, and his diabetes is getting so bad that his feet are turning black.
     I'm questioning what it takes in their eyes to be disabled. Yeah, about every time we go to the doctor's, they are digging Paul's grave, telling us that he probably won't make it another 6 months but he's been able to make a liar out of them so far. My problem was that his new doctor felt he was disabled enough to be on SSD but one month later when his disability insurance through his company questioned it and sent his new cardiologist a letter, it was as if they didn't believe this cardiologist was not qualified enough to make the decision on his own and they sent him a letter from his previous cardiologist that had not seen him or even came in when he was hospitalized after his heart stopped.

Brenda N's December 17 reply to Maria's December 13, 2001 - Hi, Thank you Maria, for that info. They did the tracheotomy with no problem and did the feeding tube. Mom still isn't responding very much. Like you and the docs say, she has been on lots of drugs heavily sedated for almost 2 weeks and it may take lots of time for her body to recover. She did experience some reactions to drugs since the surgery. It makes you wonder what might have affected her during surgery that we aren't aware of. The EEG today was normal. Her kidneys are doing much better. The blood in her stool was nothing to be concerned about. Her temp has gone down steadily and is currently at 100 degrees. The infectious disease doc is encouraged by that. He finally had a culture grown, which they thought was a fungus and then yeast indicating an infection in her body. So they ae treating her with antibiotics. Our concern with the infection was that if it originated from the valve (surgery) they would have to do surgery to remove the valve and her chances of surviving would be slim to none but all cultures taken since have come up negative.
     We are encouraged despite the slow recovery. She is being evaluated by a rehab hospital which insurance has approved. One step at a time.

Susan B, December 17, 2001 - Hi all, I just need to vent a little. Today my husband called the city (his employer) to see about retiring. He is doing much better, his heart is now normal size and his EF has gone from 15% to 30% in the last 6 months but he is accepting that he cannot fight fires any more. It is a sad day but he got his 25 years in and can retire on disability and I can't be cut off if something happens to him. Fire fighters in our city don't pay into Social Security so the rules are different. He is going to take some tests to see what else he can do. All he has ever wanted to do was fight fires, but with his heart he cannot. He has been working in my office but he needs to do something he loves or at least likes.
     I am so upset by how this has all played out. His employer has not handled this well. Losing his job is breaking his heart and mine as well. I suggested having a retirement party so that he can see all of his friends but he is not interested. He does not want to even celebrate his 25 years on the job. He told me that it just hurt too much. For the last month he has been on sick leave while the city looked to see if he could get a spot at the alarm office. He has been in limbo all of his time and it has taken a toll on him, and me. He talked to his old boss and is ready to retire, maybe. Limbo is too hard on us. He is losing ground on his health because he does do his workouts and he is losing his motivation.
     I guess now is just as good a time as any to start over with his life. My parents are trying to talk my husband into going to school to do something else that will work within his limits. His doctor told him that he needs to use his brain and not his brawn. This is a big change for him and us. I am just trying to hold it together. Thanks for letting me vent. It has been a long month of waiting to see if he had a job or if he had to retire. I don't think that I can take another month of it. Thanks again, Susan.

Maria's December 18 reply to Brenda N's December 17, 2001 - Dear Brenda, These procedures always seem so scary before they do them but once they are in place the patient is more comfortable, especially the trach; But it is much better for the patient than having all that stuff in their mouths and noses.
     My husband was "medically paralyzed" and in a drug-induced coma for 3 weeks. They did a procedure called ECMO - I don't know the medical term. Esentially he was on a heart-lung bypass machine for almost 7 days. They do this with premature babies all the time but it is rarely done in adults for an extended period. At any rate, the details are too many to go into here.
     After they turned the drugs off it was a full 2 weeks before he showed any signs of coming around. The trauma surgeon and cardiothoracic doc kept telling me, "Slow and steady wins the race." It became my mantra. The road is very long and some of the best advice I got was to stay between the peaks and valleys - not easy.
     Take care of yourself now because when your mom gets better and is ready to go home you don't want to be the one to be sick! She'll need you more when she wakes up and when she goes home. Sorry to be long-winded. I guess it just feels good to be able to share some of my experience with someone just going through what we have already been through. My best wishes to you and your family.

Davida S' December 18 reply to Bonz' December 17, 2001 - Hi Bonz, Have you spoken to the doctor that changed his mind? Explain to him what you are trying to do is to get the insurance company to pay a legitimate claim. I would make an appointment to see the doctor and go in with your husband and explain that you are there to verify if he is disabled or not, and find out what the doctor bases his determination on. Get him to write a letter to the fact. It's this doctor that stands between you and this insurance company. Don't let this go. This sounds ridiculous. I hate to think the doctor doesn't remember your husband and the condition he was in but get a face to face with this doctor and bring the denial letter, if any.

Barbara H, December 18, 2001 - Hi, My dad was diagnosed with CHF just this past October and I'm concerned that something is wrong. When I spoke to him today he said that he had slight difficulty breathing, which he had told his cardiologist that day at his regular appointment. The doctor said that his lungs were clear and his heart sounded strong. If it is not fluid in his lungs, what else could it be? Any ideas or comments would be appreciated, Barbara.

Lisa, December 18, 2001 - Hi, My boyfriend has just spent the last week in the hospital, diagnosed with severe CHF. He has recently gone through a messy divorce and has turned to occasional drug use. Since the hospital discharged him he has quit smoking cigarettes but doesn't see the harm in smoking crystal meth occasionally. I told him that is one of the causes of CHF. Now he wants to know where I got that info. I can't find it anywhere. Pleae help.

Jon's December 18 reply to Lisa's December 18, 2001 - Hi, Speed (crank especially) causes tachycardia, and chronic tachycardia can cause heart failure. Also, ischemia - loss of blood flow - can be caused by speed and that can lead to heart failure and strokes. See the Merck Manual here and here at the least - I only did a very quick search. There may also be dangerous drug interactions with heart meds. Those probably won't be listed because illegal drug use interactions are rarely studied in trials. Nonetheless, such interactions do occur. Jon.

Mike W's December 21 reply to Lisa's December 18, 2001 - Hi Lisa,therre was a phrase coined in the early 1960s (my own hippie drug time) - "Speed Kills" - well, it still does. Surely if you do a search on any search engine like for speed or amphetamine you will get more than you want to know. I'm not one of those hysterical anti-drug people but if one were to choose a drug not to use/abuse with a heart condition, speed would be it.
     Surely, you've heard the stories about 20-something-year-olds dropping dead from using cocaine. If cocaine can kill someone with an undiagnosed heart condition (and that is well documented), take a drug like crystal and multiply the risks by, I don't know, say 5 or 10 times and you have, well, your boyfriend. I'm going to assume that he really is that young and naive or the other alternative, that's he's actually suicidal. "Casual" use of speed by someone with CHF is kind of like some healthy person only playing Russian Roulette on weekends. Not to get to heavy, but get with it! Good luck to you both.

Rick, December 22, 2001 - Hi, Where do I start? I'm concerned that the symptoms my 75 year old father has had since this summer may be the start of CHF. First he was complaining of a feeling of "fullness" in his abdomen. His PCP passed it off as some type of gastrointestinal hernia with the testing done. In retrospect, I'm wondering if it was ascites instead. In the last 2 months he has been experiencing chronic, mild to moderate swelling in his hands and feet. A different doctor has simply prescribed diuretics (Flomaxx) which haven't helped.
     Now he has just gone for a physicial related to the asbestos lawsuits. He's not having problems with that. However, that MD detected an irregular heart beat and said he should follow up. This is starting to sound like CHF. We are going with him to his "regular" general practitioner on Monday regarding the edema. However now knowing that edema is only a symptom and in context of the now detected irregular hearbeat and the complaint over the summer of feelings of fullness in his abdomen, what should we be pressing his general practitioner to do regarding testing? This is in Florida where we have always had the sense that overall care for the elderly isn't very good and the MDs tend to have an attitude of "They're old and gonna die anyway" when it comes to treating the elderly. I'm especially puzzled as to why his PCP has prescribed no diagnostic tests with respect to the swelling in his hands and feet.
     Obviously we're not the doctors - we're the kids involved - but what should we be asking dad's doctor? What testing is reasonable for someone with swelling in the extremities and an irregular heart beat? Dad isn't proactive about his health care so unless we get involved he won't ask any questions. Sigh. Any suggestions appreciated.

Jon's December 22 reply to Rick's December 22, 2001 - Hi Rick, Sounds like he needs an echo pronto and probably a new doc as well. A chest x-ray is not enough, either. Jon.

Rick's December 22 reply to Bonz' December 4, 2001 - Hi Bonz, To help you sort out your insurance mess here's a few pointers:

  1. Your Doctor is not the party best qualified to assist with Paul's disability determination. That may strike you as odd but disability law and health insurance policies are written by attorneys, not doctors. Unless your MD knows exactly what the legal definition of disability is - according to the insurance policy - he may be shooting in the dark when trying to provide information
  2. Claims processors are geared toward looking for a reason why someone is still not disabled. They take a "broad focus" approach, rather than a "narrow focus" approach. Not being able to perform your former job does not mean that you are automatically disabled. You have to show that you cannot perform any substantial work at all. In other words, if you used to drive a forklift 10 hours a day and can no longer do so, the claims processor will look at matters and say, "You can still perform telemarketing from your bed side so you are not 100% disabled."
  3. You are confusing some of us by referring to Paul's insurance as "SSD" and stating that it's a private policy. SSD (SSDI - Social Security Disability Insurance) is not a private LTD (Long Term Disability) policy. Most people that have worked for someone else - any place of employment where SS taxes are withheld from your paycheck - are eligible to file a disabililty claim through Social Security. It is not unusual for many people to pay for additional private LTD coverage, above and beyond what can be had from SSDI. If this is your case and you have not already done so, file a claim for Social Security Disability benefits as well. A private LTD policy does not negate the Social Security benefits and vice versa. A quick call to Social Security at 1-800-772-1213 can determine if Paul is eligible to file a claim.
  4. Where is the information coming from, that Paul's doctor first stated he is disabled and then turns around and says he isn't? Are you getting that info directly from the doctor? Or is that what the insurance carrier is saying? Remember, anything presented to the insurance carrier is subject to interpretation. The MD may not have said or sent them anything contradictory at all. However, how the insurance company interprets things is another matter.
  5. If you are getting nowhere by yourself, locate an attorney that specializes in Disability claims. For SSD claims they are restricted by law to a maximum fee you know in advance. For a private LTD policy they may charge either a flat fee or a percentage of the retroactive benefits due on a contingency basis. In either case, paying the attorney is better that receiving no benefits at all. It should cost you no money up front.

Insurance claims can be a pain but if you aren't getting anywhere, hire an attorney. You don't need the added stress of money worries in addition to Paul's health concerns.

Davida S' December 24 reply to Rick December 22, 2001 - Hi Rick, I would ask for a referral to a cardiologist pronto. I don't understand how some patients with heart problems or disease continue to see a PCP versus a heart specialist. If your dad has medical issues with his heart, deal with a heart specialist only. It may require a referral but a specialist will know what tests to offer.

Deb, December 26, 2001 - Hi, I could use some advice or insight. Last Tuesday evening my father's legs went out from under him and he became somewhat confused. This is, I learned after the fact, about the fifth episode of his legs giving out in recent weeks. My mother drove him out to the hospital. The doc said the leg and confusion were due to his heart.
     Wednesday at 3: 00 PM they implanted a pacemaker - a one-wire pacer, whatever that means. Thursday he was even more pale that before the pacemaker implant. He looked like that gray/white plastic housing of some computer monitors. Friday they released him.
     Saturday he was back at the hospital with fluid in his lungs and his kidneys not wanting to function. They eventually got his kidneys working. He is in medical intensive care. They now say his heart is at output 10%, a lot worse then they thought when they implanted the pacemaker. They are talking about implanting a defibrillator due to some fast beating elsewhere in his heart. They have the pressurized breathing mask off him now and think they can improve his heart function through changing some medications around. He is 81 years old.
     Here's the question or advice needed. It sounds to me like he is heading toward the end of his CHF path, or could I be wrong? None of us have crystal balls, but does anyone have experience on how the rest of this path typically plays out and over what kind of curve?
     My objective is for my father to be as comfortable as possible and have the best life possible under his circumstances. He has to have restraints to not pull out the catheter and to not pull off the pressurized mask. He seems to get it that they are trying to help him but on the other hand sometimes his confusion leads him to believe the mask or catheter are the problem - get rid of those things and he would be fine. What do we expect as this plays out, advice on how to help prepare my mom, questions for the doctor, can she possibly manage him at home or do patients in this condition stay in the hospital or do they go to a nursing home, can they improve to say output 20% or what?

Susan B, December 27, 2001 - Hi, Thanks for for letting me vent. It really helped me. Thank you to all who wrote me. I have a happy update. I was so upset that I started talking to my lawyer friends about the treatment of my husband by his employer. I called my husband's old boss, who is in law school, and told him that I was fed up and I was taking names of attorneys to call to hire on my husband's behalf. He told me that maybe it would all work out without us hiring an attorney but I told him that I was unwilling to wait anymore. My husband's health was being affected by the lack of response. I told my husband that we just needed to give up and he needed to get back to work on his health. We started walking together last week.
     Then by some chance they called last week and wanted my husband to go in to work his new job - one he could do with his illness. Yea! He started last week. I am still going to have him look into other jobs he can do just in case he does not like the new job but for now he is much happier. He is still walking and having his blood pressure recorded at the mall. He is doing well. Thanks for listening.

Judy H's December 27 reply to Deb's December 26, 2001 - Hi Deb, My husband was at the same point as your father back in March, 2000. I have to tell you what I always tell myself - Don't give up! My husband was almost too weak to undergo the ICD implantation and his recovery was slow, but he did recover. His EF is not great - 15% or so - but he still can do most things for himself. He is going downhill somewhat but he is still here and I am still hopeful.
     The CHF doc at Cleveland Clinic hasn't given up on him yet either! We went through what you are going through - the ICU, etc,... The ICD was a good decision. My husband has been zapped twice so far: once for a V-tach episode in June of 2000 and once for a V-tach/V-fib episode this month. I consider the recovery from the V-fib the only Christmas present we need. Take care, I'll be praying for you and your family. Judy.

Janet, December 28, 2001 - Hi, It's probably been over a year since I visited. I'm sorry I haven't been around. I've had some pretty serious depression to deal with, and am finally feeling like I'm on the road to recovery from that. My husband Dan has CHF but the cardiologist considers him stable and has him on a 6 month schedule for visits. He is due for an appointment on January 4, 2002. I expect that he'll tell Dan the same things he has before, which Dan still has not done - reduce salt, reduce fluid, reduce fat, and exercise. Dan has bacon, ham, and potato chips whenever he wants and drinks what he wants. He's retired and does most of the grocery shopping and cooking. I do not attempt to control his eating and drinking. The 50mg Demedex twice a day keeps his fluid under control. He is able to drive and to walk at a slow pace for a moderate distance although he gets short of breath very easily and has daily chest pains that can be pretty severe and seem to ease with nitro.
     Dan says that he has lived longer than his doctors expected (3 years since a bad heart attack). At one point when they determined that several of his bypasses had failed. They did talk about heart transplant being in the future but now they talk of it being a long way away. He frequently tells strangers that he is dying of heart failure and talks often of dying. Quite honestly, I am not coping well (again). We recently found a house with a first floor bedroom and will be moving in March. I'll do the majority of boxing and we're hiring movers for the furniture. We will install a stair lift to the basement, but at least there is no second level and the outdoor maintenance will be reduced.
     I can't begin to understand how Dan feels and I think he probably can't begin to understand how it feels to watch someone deteriorate either, and to constantly hear him talk about dying. I'm getting counseling but Dan doesn't feel the need for himself. I'm not sure what I wanted to say other than to vent but there is one question. Has there been much board discussion on the heart jacket? Are cardiologists considering this as a promising treatment? We live near Louisville, Kentucky and I believe they're participating in trials. I'd be interested in your thoughts on this before his appointment. Thanks a lot, Janet.

Jon's December 28 reply to Janet's December 28, 2001 - Hi Janet, I'll just comment on 2 things and leave the rest (coping) to those who know more about it - the caregivers here.
     First, 50mg Demadex is equivalent to about 200mg Lasix so it is a fairly high dose. Second, the Acorn heart jacket: This is actually an offshoot of the failed cardiomyoplasty trial. Researchers discovered that cardiomyoplasty worked as much because the back muscle restricted the heart from enlarging as anything, thus the "jacket" concept was born. It is in a trial now, including valve repair patients and heart failure patients, as I undestand it.
     However, your husband is not going to qualify for any trial, sorry. He also won't qualify for a heart transplant when the time comes. A patient has to be compliant to enter either. That means he has to follow doctor's orders - period. Many transplant programs even make you sign a legal contract that you are bound to follow, stating your compliance goals clearly, along with consequences if you don't follow the program. You would also have to sign the contract.
     He must face up to changing his life style if he wants help beyond meds. He won't be able to fool the doctors long even if he gets into a program by lying. I don't mean to sound harsh but I want you to know this so it doesn't hit you unexpectedly when your hopes are high about getting him into a trial or transplant program. It's better to know what's coming, I think, so you can prepare for it. 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 Jon C.

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