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

Frank Smith's 6-1 reply to Jean Ann's 5-31     drugs
Lonnie 6-1     does my brother have a chance?
Jon's 6-1 reply to Lonnie's 6-1     he has a chance
LouAnn 6-4     intro, seek answers and advice
Sandy 6-4     seek info and advice
Judy H 6-4     update on Bob, some advice
Kathryn C's 6-6 reply to LouAnn's 6-4     young men & CHF
Sandy's 6-6 reply to Jon's 6-4     Coreg & pacemaker questions
Jon's 6-6 reply to Sandy's 6-6     Coreg & pacemaker questions
Bev 6-6     update, made the move & more
Judy H 6-7     travel questions, sleep comment
Laura 6-8     seek Harry B's e-mail address
Sally 6-9     seek CHF specialist in Michigan
LouAnn H 6-9     update, caregiving & more
Sharon 6-9     update on my husband after carotid surgery
Janet 6-9     are ICDs associated with low EF?
Pat E 6-12     what to do?
Jon's 6-12 reply to Pat E's 6-12     one suggestion
Katie 6-14     just dropping by
Lee B 6-14     husband has multiple problems - any ideas?
Karen O 6-15     ICD leads replacement question
Jon's 6-15 reply to Karen O's 6-15     some web sites to check
Bev 6-21     Coreg questions
Jon's 6-21 reply to Bev's 6-21     Coreg info
Lee R's 6-21 reply to Karen O's 6-15     device lead removal & replacement
Todd K 6-21     my dad died
Sharon 6-21     beta-blocker target dose question
Veronica 6-21     is generic Lasix ever a problem?
Rich G 6-21     watch out for Vioxx!
Mike W's 6-21 reply to Sharon's 6-21     changing meds on our own
Bill D's 6-21 reply to Sharon's 6-21     changing meds on our own
Fred D's 6-22 reply to Rich G's 6-21     Vioxx and CHF
Sue 6-22     seek positive Coreg experiences
Karen P's 6-22 reply to Rich G's 6-21     Vioxx and CHF
Karen D's 6-25 reply to Sue's 6-21     Coreg experience
Lucy 6-25     has anyone gotten diarrhea from meds?
Sherry 6-25     seek others facing these kind of problems
Suzy 6-25     Vioxx, exercise & more
Roseanne S 6-25     intro, it's a rough road, getting worse
Anna N's 6-25 reply to Sue's 6-22     adjusting to Coreg experience
Carol G 6-25     intro, muscular dystrophy & CHF, and more
Jon's 6-25 reply to Carol G's 6-25     finding info and CHF specialists
Janet 6-25     seek CHF and prognosis info
Jon's 6-25 reply to Lucy's 6-25     diarrhea possibilities
Jon's 6-25 reply to Sherry's 6-25     erratic behavior
Mary 6-26     seek CHF doc in Minneapolis & more
Janet 6-26     mexitil & CHF question
Roseanne S 6-28     noise affliction & pulmonary pressure questions
Jon's 6-28 reply to Roseanne S' 6-28     drugs and pulmonary pressure
Ann 6-28     hang in there
Stacy W 6-29     intro & questions, is this end-stage? & more
Susan B 6-29     getting good info, CHF docs
Susan B 6-30     my husband " his job, and more

Frank Smith's June 1 reply to Jean Ann's May 31, 2001 - Dear Jean Ann, Please allow me to offer some comments since I have CHF and cardiomyopathy - 1/3 of my faviorite muscle is dead. i also have COPD. The internist's comment was not called for and he should be ashamed of himself without having any factual data to support his comment. Also treatment for dementia using Zoloft may be wishful thinking on someone's part. Perhaps he meant to treat clinical depression, which your husband could very likely have. In that event, Zoloft may be a very safe and effective drug and if it works for him, the dosage may need to be adjusted down or it may help his reactions to the med by taking it at bedtime. I'm glad you have posed your concerns at Jon's Place, and perhaps others will offer their comments. They are always no charge. ;-) Later, Frank.

Lonnie, June 1, 2001 - Hi, My brother was diagnosed quite some time ago with CHF. He has been in and out of the hospital, most recently over the past year to have fluid retention taken from his body. Mostly, this is in his stomach and around his lungs. Last week he went into the ER for draining again. He came home and went back to work at my wife's store. The night before last he drove himself to the hospital after throwing up and noticing that his urine was dark brown. He was admitted and as of this morning they wish to transport him to Shands Hospital from here in Daytona Beach.
     I spoke with the doctor and he said Lamar has cardiomyopthy and that his heart is a ruin. He must have a transplant immediately or he will die. The family gathered late this evening. He looks sort of okay. You would never know how close death is by looking at the outside. He is 39 and his birthday is Saturday, June 2. What are his chances of getting a transplant in 48 hours and how much will he suffer?
     He is afraid to sleep and has horrible panic attacks. His mind is going 100mph and he is stuck in a hospital bed next to a 70 year old man who is dying from the same thing. Please somebody say he has a chance.

Jon's June 1 reply to Lonnie's June 1, 2001 - Hi Lonnie, I don't know. It may depend on the level of care he received prior to this epsiode. I got CHF at age 36 and was diagnosed wth an EF of 13%. I am now 42 and have an EF of 40%. This is due to the care of a very good CHF specialist and God's kindness. Your brother has a chance - I just don't know the odds. Jon.

LouAnn, June 4, 2001 - Hi, In November my son stopped to help a motorist who was broken down on the side of the road. A car came along and hit the disabled vehicle that my son was standing next to. He was thrown 30 feet, took down a street sign, and landed 3 feet further away. He was taken to the hospital, where he had surgery for a crushed femur and knee. Swelling started shortly thereafter in his feet, legs, and pelvic area. They believed it was due to the accident.
     In April the swelling increased and was up to his chest. He was hospitalized for cellulitis. He was discharged 8 days later but the swelling was still there. Four days later, he went back to the hospital with trouble breathing, coughing, extreme fatigue, and throwing up.
     He saw another doctor this time, who did an echocardiogram. This doctor said my son had cardiomyopathy and sent him to a cardiologist who said he had CHF. He admitted him to ICU and said only 10% of his heart was working. He had IVs and lots of pills. He lost 82 pounds of fluid in 8 days. He was then moved to a regular hospital room, and had his IVs removed and all meds were then oral. The doctor put him on a 2000mg low-sodium diet, with fluid intake restricted to 1500cc daily.
     The doctor said he cannot give him a heart transplant because of his weight. He wwighed 503 pounds when admitted to hospital, and weighs 419 now. His heart is also too weak right now for a transplant. Social Security Disability forms were filled out at hospital. The doctor says he should be approved right away and requested checks to be started on presumed approval. He said we should hear something in 45 days. My son is currently taking furosemide, famotidine, digoxin (Lanoxin), warfarin, lisinopril, potassium, spironolactone (Aldactone), and aspirin. He will be 25 years old June 6.
     In May of 1999 he had heart surgery for Wolfe Parkinson White syndrome. They said he had an extra pathway in his heart and burnt it so the electrical impulses would not go through. He suffered 6 or 7 episodes a day of SVTs. His heart rate was 256, with BP 68/54. He hasn't had any problems since surgery until now. The doctor said the damage to his heart is permanent. So, what weight does he need to get down to in order to be considered for a heart transplant? Is there any hope for him? He came home from the hospital Friday and is looking at all the food labels and is determined to follow the doctor's orders on the diet and fluid restrictions.

Sandy, June 4, 2001 - Hi, I lost track of your wonderful site and am glad I found it again. My 77 year old husband has an ICD/pacemaker and has had a triple bypass. To the current problem, his cardiologist is upping Vasotec from 5 to 7mg with the plan being to go to 10mg; Then perhaps add Coreg. A third idea is to have a new lead from his pacemaker go to his right ventricle. Of course, I want immediate solutions because he is severely fatigued and his BP is 90/54. I have not been able to find much info on carvedilol, do you know of anything? This is getting old. Thanks for any response, Sandy.
Jon's note: Hi Sandy, click the link named Coreg in your post above.

Judy H, June 4, 2001 - Hi, I want to thank everyone who has contacted me concerning my posts from May about my husband Bob's terrible ultrasound results. Here is an update. We followed up with a visit to a CHF doctor at Cleveland Clinic who told us that Bob's ultrasound from May 10th was about the same as the one done at Cleveland Clinic in August, 2000. It's not good but Bob is stable and since he still can get around okay, he is not sick enough to be considered for transplant or other radical procedures yet. We will follow-up in 5 months at Cleveland Clinic.
     I think the greatest lesson we learned from this is to get copies of all our records, to see exactly where we stand medically. We did that and we were amazed at what we discovered, versus what we have been told. The other lesson that I have learned is that I need to become a more patient and more loving person, and to appreciate what I do have. CHF can take quite a toll on us as caregivers but we need to hang in there. Thanks again, Judy H.

Kathryn C's June 6 reply to LouAnn's June 4, 2001 - Hi LouAnn, I just have to tell you that I can certainly relate to what you are going through. I replied to you off line from my office. My son is 27 and has CHF and weight issues and depression. I wish I could help him more but there are some things we all must do for ourselves. I hope that you will take encouragement from reading the information on this wonderful site.
     Everyone here is in the same boat, albeit a leaky-weaky boat. Perhaps your son and my son could exchange e-mails. They are both young men who have been handed a tough medical diagnosis. It is difficult to find anyone in their age group to relate to. Take care and thanks, Kathryn.

Sandy's June 6 reply to Jon's June 4, 2001 - Hi, Thanks for your response, Jon. I did read the Coreg page before, but am still confused. It would seem to me that a lead to the right ventricle of the heart would be a more direct approach and not have med side effects. He was on Coreg 2 years ago with not much success so this new cardiologist is suggesing carvedilol in lieu of Coreg. What about alternative meds for CHF? One book on herbs says Hawthorne is good for strengthening the heart muscle and also an adrenaline complex. Do we know too much or too little? <g> Thanks, Sandy.

Jon's June 6 reply to Sandy's June 6, 2001 - Hi Sandy, Carvedilol is Coreg. Resynchronization pacemaker therapy is still experimental and only benefits about 25% of CHFers. A long QRS duration on EKG suggests that such a pacemaker might help. You can read up on some herbal therapy possibilities at Nutrient Stew and through the links on the Nutrient Stew pages. I hope it helps. Jon.

Bev, June 6, 2001 - Hi, I want to thank all of you for all the help and e-mail replies. We made the decision to go to Arizona and rented a camper. Our sons came in to help us pack and drive across country. We made it safe and sound, and it is beautiful here. The dry air seems to be helping my husband and he is responding well to being around the grandchildren.
     We have found a CHF doctor but it will be a little while before we can get an appointment to see him. I just got my computer hooked up again and have been catching up on all the posts. My husband has had dry, cracked skin (his legs have been the worst due to ulcers and bacterial infection) and we had been using aloe vera on his skin. The last time he was in the hospital in May they started using Aquaphor on his skin and this has helped very much.
     I hope everything is going well for all of you. I love this site and have learned a lot from Jon and from all of you. God bless you all. Being out here with my son and family, we hope to be able to get my husband to church, which we have missed since he has been so ill. Thanks again for all your help.

Judy H, June 7, 2001 - Hello everyone, Does anyone have any tips on traveling for CHFers? We need to go from northeast Ohio to Boston in August and spend about a week there. The cardiologist (who was also a flight surgeon in the Air Force) said short flights might be okay. We are also considering driving there or even taking Amtrak.
     I also wanted to make a comment to those with CHF on the other side of the message board, concerning sleep. My husband Bob is known in our house as the "Nightwalker." He stays up late, then sleeps maybe 2 to 3 hours, then he gets up because he's hungry or because he just can't sleep. It's not unusual for him to be cooking at 4:00 AM. He also takes naps during the day. If he gets too strung out from not being able to get some "good" sleep, a small dose of alprazolam usually helps him. I think this sleep problem alone should qualify any CHFer for disability! Before Bob retired, he could barely stay awake on the job. Take care, Judy.

Laura, June 8, 2001 - Hi everyone, I am just looking for Harry Bearsell. I lost his e-mail address and would like to get back in touch. Harry, if you read this or if anyone else knows Harry's e-mail address would you let me know? Thanks!

Sally, June 9, 2001 - Hi, I am looking for a CHF specialist in Michigan. Are there any recommendations for specialists in the Flint, Lansing area? Thank you, a concerned daughter.

LouAnn H, June 9, 2001 - Hi everyone, We are still trying to get the right dose of meds. Thursday's blood work showed his potassium level too high and his blood too thin. We are going back Monday to recheck blood work. We are using the low-sodium cook book and I love it! I've lost a couple pounds myself.
     Remember, as much as we love our CHFers, we have to let them get involved in their own care. My son is going through the cookbook and suggested menus, making grocery lists and helping cook dinner. Yeah, he is disabled but he needs to feel that he is contributing. It helps him understand the sodium and fluid restrictions too. No one wants to be completely dependent on someone else. Yes, we love them and want to do everything we can for them - but they need to be involved too!
     His doc says that as long as his weight stays stable we have a fighting chance with this thing. So we are fighting together! Love and hugs to all.

Sharon, June 9, 2001 - Hello to all, I am posting with an update on my husband. He had his surgery for his carotid artery on Wednesday and he was released on Friday. It was very hard on him. He said if he had known what it was going to be like he would have thought twice. However, he is really doing very well. He had 80% blockage in the right side and the doctor said it was very unusal to have the blockage so far up, almost to his head.
     His heart managed fine. He did have an eposide of filling with fluid and had a hard time breathing but it was cleared up quickly. The next day they wanted to put in IV potassium and he panicked and started having trouble breathing again but they had a tube around his heart measuring the fluid and said that he was a little low, so he was able to calm down. It is very hard to see someone you love having a serious medical problem. The good news is that we are home. He is very tired but able to eat and take his meds although his throat is swollen from the surgery. I hope all is well with you and your loved ones. Peace and good health to all, Sharon.
Jon's note: This is very good news!

Janet, June 9, 2001 - Hi, My husband, who had an ICD implanted in January of 2000, and has diligently taken all his meds - Coreg, Coumadin, and Mextilin - now has an EF of 20%. Does anyone know the relationship between an ICD and a low EF? He had taken Cozaar in the past and developed a serious cough. Let me know. Thanks, Jan.

Pat E, June 12, 2001 - Hi, My dad is 84 years old and was diagnosed 3 years ago with CHF after years of high blood pressure. Since that time he has been also diagnosed with end-stage COPD, pulmonary hypertension, amyloidosis, and the list just seems to go on.
     He is being treated by an internist and goes to specialists for the amyloidosis and COPD. He has not seen a cardiologist except to have his pacemaker (which he received 2 1/2 years ago) checked. He is not on any CHF meds except diuretics (Lasix and zaroxolyn).
     Since December he has gone from 189 lbs to 153 lbs. His legs were swollen up and oozing fluid but that has gone away but now his stomach has swollen up so that he looks 9 months pregnant. His latest visit to a gastro doctor (after enduring an endoscopy and colonoscopy for blood in his stool) said his stomach swelling is due to gas and gave him Zantac, Phazyme, and Mylanta. I thought his stomach swelling was due to ascites - edema in the abdomen caused by CHF!
     In addition to all this, he has had 2 blood transfusions in the past 3 weeks and received 5 units of blood. No one has told him why he needs the blood and no follow-up appointments have been made. Am I wrong to wonder what is happening with my dad and all his major diagnoses? Dad lives in Florida and I live in Ohio, therefore I get all this information by phone and e-mail from my mom. My mom is taking care of him but I am concerned about the lack of treatment by a cardiologist. I also am concerned that every time dad goes to a doctor, they come up with another diagnosis! Does anybody have an advice to a concerned daughter?

Jon's June 12 reply to Pat E's June 12, 2001 - Hi Pat, He sounds like he has classic CHF. My only suggestion is to convince him to see a CHF specialist. This would most likely greatly improve his quality of life and possibly take enough physical stress off him to improve his other conditions. Jon.

Katie, June 14, 2001 - Hi Jon, Once again I wanted to thank you for The Beat Goes On. This site was so helpful for me during my husband's illness. Today I had the need to come and visit my fellow caregivers and share with them. Never give up hope, be patient, and hold your loved ones everyday, Katie.

Lee B, June 14, 2001 - Hi, My husband Allan suffers with class 4 CHF, is diabetic, and is having to start kidney dialysis in the fall. Recently he has developed severe headaches and nausea. He hasn't had any additional medications. He was taken off Metformin due to his failing kidneys so his sugar readings are higher and the doctors are blaming that for the headache. Our experience with high sugar is more of a "thick" head, whereas this is a definite pain near his temple.
     Of course, the nausa is likely the high sugar. His blood pressure readings have been good, along with kidney readings. They have even had to cut back on his blood thinner because it was too thin! This has occured only since he had an allergic reaction to an iron transfusion. He went into complete heart failure (our local nurses got to practise their CPR).
     The only other factor since this occured is that he has developed a shakiness in his right hand. Yet, the doctors don't believe he was "out" long enough for permanent damage to have occured. Any words of wisdom would be appreciated. Unfortunately, we do not have access to a CHF specialist due to our location so thank you Jon, for the help you provide via this site. Lee B.
Jon's note: Has he seen a neurologist?

Karen O, June 15, 2001 - Hello everyone, I hope you are all having a good day. Jon, this is a wonderful site and I'm glad it is here. I'm really nervous. Next week I have to go in for surgery for my AICD because one of the wires is fractured and they have to take all the wires out, replace them, and put in a new defibrillator. The one in my chest has been turned off because it was shorting out. That makes me nervous. This will be my fourth one, with the last one implanted in October, 2000. I've been told that they would use laser and their hands to get wires out. If anyone has been through this, please e-mail me. Take care everyone.

Jon's June 15 reply to Karen O's June 15, 2001 - Hi Karen, Also be sure to ask at some of the forums just for people with implanted devices. These are listed at my Links page. Some include The Pacemaker Club (the question of leads replacement would be a natural there) and the Implantables forum and The Zapper. Jon.

Bev, June 21, 2001 - Hi Jon, I just read your page about Coreg since our new doctor wants to start my husband on this drug. My husband's systolic pressure is a little high (130 over 160), diastolic is fine (60 to 70) but his EKG showed sinus bradycardia and his pulse is usually in the 50s and 60s, and at night in the 40s and 50s. After walking, his pulse may go up into the 80s. We have just had a bad time with depression also. I have a call in to the nurse practioner but she didn't seem concerned about his already slow heart rate. She said it can go down to 35 without any problems. He is just getting back on his feet and really seems to be thinking and talking again. Are there any questions I can ask the doctor that maybe will help clarify this? There must be other meds to lower his systolic pressure without lowering the heart rate or causing more depression. I know I am rambling and I do like our new CHF doctor but unfortunately we only saw him a few minutes. I would appreciate any advice you or anyone else could give me.

Jon's June 21 reply to Bev's June 21, 2001 - Hi Bev, SKB's own material about prescribing and using Coreg says, "If pulse rate drops below 55 beats per minute, the dosage should be reduced." One would assume that means Coreg should not be started in a patient with a pulse rate in the 50s. Low heart rate and low blood pressure were significant side effects in Coreg trials, with about 8% to 9% of participants reporting these side effects. One percent withdrew for low heart rate and over 3% withdrew from trials for low blood pressure.
     I would be concerned as well about depression. Coreg is well known to aggravate depression. Again, this is documented in SKB's own Coreg materials. Personally, I question anybody - I don't care who - who says that a pulse of 35 is fine, except in exceptionally well-conditioned athletes! Jon.

Lee R's June 21 reply to Karen O's June 15, 2001 - Dear Karen, While I have not had any wires removed - laser surgery is also what my physicians do at St. Luke's Roosevelt in New York City. Their site is and it is helpful. I also know some folks at The Zapper have had this done. You may want to write into their forum as Jon suggested. Lee R.

Todd K, June 21, 2001 - Hello Everyone, I just wanted to let you know that my dad passed away on June 5 after a long battle with CHF. He was 73 years old and fought to the end. There are great strides being made every day to fight heart failure and my belief is that this will be very treatable in the near future so hang in there!
     Jon, you have provided me and my family with invaluable information and support over the last 2 years and we believe this helped us help dad live longer and better. Thank you and take care, Todd.

Sharon, June 21, 2001 - Hello to all, I have a question that I hope someone can help me with. My husband has been taking a beta-blocker for about a month now. The doc says his heart rate should be between 50 and 70 beats per minute. It is usually between 52 and 74. We take his BP twice a day. His target dose for the beta-blocker is 50mg but he is only on 25mg. Should we try to raise the dose to 50mg? I know no one is a doc but if anyone has any insight I would appreciate it. Thanks to all and peace and good health to all, Sharon.

Veronica, June 21, 2001 - Hi Everyone, My father has been taking Lasix for several years, but 2 weeks ago the pharmacist asked him whether he minded if they gave him furosemide. Knowing it was the generic version of the same med, he agreed to the change. However, since the change he is having difficulty with swelling. We were told by some nurses that Lasix works better for some individuals, but my father's doctor insists it's exactly the same. Has anyone had similar problems with furosemide? Veronica.

Rich G, June 21, 2001 - Hi, My 76 year old mother has been a CHF patient for many years. She was somewhat stable until about 10 days ago - able to exercise, sleeping okay, and eating properly. With the onset of arthritis in her knees, she was prescribed some Vioxx. This was a terrible, terrible mistake. Just 10 days on this drug and she has probably suffered permanent mitral valve damage. Please be very careful with seemingly unrelated medicines and conditions. Read the Vioxx warnings carefully, it is probably not for CHFers.

Mike's June 21 reply to Sharon's June 21, 2001 - Hi Sharon, If you mean should he take an increased dosage of beta-blocker on his own? In my lay opinion, absolutely not. Sometimes we don't appreciate just how powerful and potentially dangerous some of these medications we CHFers take are. A good rule of thumb to live by in my opinion is never change any prescribed med without consulting a doc. Peace, Mike W.

Bill D's June 21 reply to Sharon's June 21, 2001 - Hi Sharon, You didn't tell us what his blood pressure was. If it's low, don't increase it! As a rule of thumb, never increase the dose on your own. Get the doctor's advice first, Bill D.

Fred D's June 21 reply to Rich G's June 21, 2001 - Hi Rich, I have class 3 CHF. I was prescribed Vioxx by my GP without my CHF doctor knowing. I only took it for a few days and I am glad that I stopped. Thanks for the warning.

Sue, June 22, 2001 - Hi everybody, My husband has congestive heart failure. His doctor just started him on Coreg at 3.125mg (the smallest dose). That's just the start and the dose goes up from this point. We have heard a lot of negative things about this drug - pretty much that people's bodies are not able to tolerate it. Is there anyone out there who has had positive results? The doctor did tell us that this is a wonderful drug. In the beginning you feel like you're in slow motion and you have good days and bad days, but if you can get past the 6 month point you pretty much have it made. Does anyone agree with this? Thanks in advance for any help. Sue and George S.
Jon's note: We have seen LOTS of positive comments about Coreg use. Have you used The Archives search?

Karen P's June 22 reply to Rich G's June 21, 2001 - Hi Rich, My husband has CHF and was prescribed Vioxx last year for gout. He had also developed kidney failure. He only took the Vioxx for 2 days but gained 6 lbs. He stopped immediately of course, and was disappointed that he couldn't take it because it gave him almost immediate relief from the very painful gout. Best wishes, Karen.

Karen D's June 25 reply to Sue's June 21, 2001 - Dear Sue, My husband was diagnosed with CHF in October of 1998. He was started on Coreg early in 1999 and was slowly titrated up from 3.125mg twice a day to 25mg twice a day. Bill has not had any bad effects from it at all and credits Coreg, plus CoQ10, for having strengthened his heart over these last 2 years. I think if you do as Jon suggests and check The Archives, you will find a lot of very positive remarks about Coreg. I hope your husband has the same reaction to it. Please feel free to e-mail me directly if you want to, Karen D.

Lucy, June 25, 2001 - Hi, My mom is 84 and was diagnosed a year ago with CHF. Since Easter this year she has been experiencing severe diarrhea. Has anyone else experienced this reaction from Zestril or other heart meds? Thanks.

Sherry, June 25, 2001 - Hi, My husband was diagnosed with CHF 2 1/2 years ago. He had no pain in his chest and never has but he is diabetic and he was not acting right. Doctors discovered through a cath that his heart had been attacked by a virus and was very enlarged and filled with fluid. His heart does not pump blood out correctly. He lost 32 lbs in 3 days in the hospital. He is on 3 Type II diabetes meds and 6 heart meds.
     Lately he has been having some problems: He is driving on the wrong side of the road although he has always been an excellent driver, he gets directions mixed up, has short-term memory problems, terrible stomach cramps, bouts of uncontrollable bowel movements, sleeps 10 to 13 hours every day. He has a scheduled doctor appointment on July 13 with his cardiologist. Should I get him in sooner?
     Also, is he lacking oxygen to his brain. Is this a meds problem? Any information on anyone else experiencing these types of problems, please let me know. What does all this mean? By The Manual, I believe he is class 3. Thank you for any help.

Suzy, June 25, 2001 - Hello All, I haven't posted here for awhile but I read you every day. For Vioxx users, my doctor prescribed it for me for arthritis and osteoporosis pain. My CHFer husband decided to try it for his own aching knees without asking or telling anyone. It caused all the bad symptoms described here earlier with excessive coughing and congestion and also with severe skin rashes that would not clear up. I stopped taking it but Vioxx so compromised the integrity of my skin that it is more easily irritated now. My husband did get a Vioxx prescription from his doctor when he saw how much it helped his joint pain. The doctor did not mention any side effects and it is truly a wonderful drug for that. When my husband saw how my skin got better after stopping Vioxx, he stopped taking it and now his skin and breathing are better.
     On another note, my husband cannot walk far or exercise much but I keep him very busy with many household tasks that can be done in a short time. He continues to drive to work every day, works about 2 to 3 hours for our daughter, which keeps him mentally challenged and sustains his self-esteem. His COPD requires oxygen 24/7 and he has his helios backpack that goes everywhere with him. His EF is staying about 55% now so he is considered cured of his CHF, although we know better. ;-)
     The doctors are much more concerned now about his 20% breathing capacity in his one remaining lung. He has a great outlook, positive attitude, and a zest for life. He'll be with us a long time. Best wishes and happy summer to all of you and all your loved ones fighting this very tough battle. Suzy.

Roseanne S, June 25, 2001 - Hi, I am a first time poster. My 41 year old husband had a massive coronary 2/18/01. He was in ICU for 12 days, sent home and readmitted 36 hours later with CHF. Since that time we have made numerous trips to the ER.
     His EF is 19%. There is no improvement in heart function since his heart attack. He can't tolerate beta-blockers and has had to lower his Capoten from 12.5mg to 6.25mg. Recently, he was admitted to the hospital with stomach pain. Two doctors said his gallbladder was bad and would have to come out. His heart doctor said he would not survive surgery and to try everything else first. After 4 days of antibotics and numbers that were going up, not down, he was given a blood transfusion and I was told we had no options; he had to have surgery and would not survive. He was given a final ultrasound and they decided that his gallbladder is sluggish but the problem was water in his liver. They had withheld his Lasix because his system was depleted and his potassium was low.
     We were sent home with him on 40mg Lasix twice a day and 40 mEq potassium twice a day. Three hours later his feet and ankles were swollen. He had to take extra Lasix. Thirty-six hours later he was at the doctor's office to have his potassium checked and his blood pressure was 70 over 30 and dropping. He was sent back to the hospital by lifesquad. He was put on a dobutamine drip and a potassium drip for 24 hours. It has now been 65 hours and he is still on the dobutamine drip. He was transfered to the CHF clinic in Cincinnati. The doctors have been trying to get him there for 6 weeks.
     The insurance company would not agree to Cincinnati and the doctors were insisting he could not go anywhere else. We finally got approval for the clinic but have been told we will have to go to Louisville for a transplant. The CHF clinic is trying to get him strong enough to survive the trip to Louisville. My husband can't accept that he needs a transplant. He has been adjusting his meds trying to feel better and refuses to take a full dose of digoxin (Lanoxin). Everything lowers his blood pressure, including antibotics. I am praying that the CHF clinic can give us some help. Thanks for listening, Roseanne S.

Anna N's June 25 reply to Sue's June 22, 2001 - Hi, For me, adjusting to Coreg was not greatly difficult. It caused more fatigue but I was already so fatigued I hardly noticed the difference. Even if it had been hard, Coreg is a lifesaver and is worth it. In my opinion, anyone who can take it should. In 3 years my EF has gone from 15% to 45% and I think much of the credit goes to Coreg. Good luck to you and your husband.

Carol G, June 25, 2001 - Hi, This is my first message here. My husband Todd is 39 years old, has Becker Muscular Dystrophy and was diagnosed on May 1, 2001 with cardiomyopathy caused by the MD. He has a EF of 25% and the cardiologist stated that he is not in CHF yet but close. Todd is on Zestril and Coreg, and they are trying to up the Coreg dosage every 2 weeks but he is not doing well on it at all.
     Two weeks ago when they raised the dose to 6mg twice a day he started experiencing tingling in his arms and legs, and yesterday his limbs started feeling cold. Todd lowered the dose on Friday after 6 days of tingling, back down to 3.125mg to attempt to relieve the tingling in his extremities so that he is still able to walk; He has poor muscle strength because of the MD. However, the tingling has not subsided yet. We don't know what to do. They want to up the dose to 12.5mg today and Todd says he is staying on 3.125mg because he cannot tolerate it and needs to be able to get around and go to work every day.
     Jon, I love your web site. It has everything. I found that Coreg can cause poor circulation so I imagine that is what is happening. He wants to wait until we see Dr. Nicklas at University of Michigan hospital in a week to raise the dose again. It appears that his body, because of the MD, is not able to tolerate Coreg very well. We have been referred to Dr. Nicklas from our cardiologist. Dr. Nicklas is supposed to be a specialist but he is not listed as a CHF specialist at U of M Hospital in Ann Arbor on your web site. Why is that? Is he not a specialist?
     I have not read of anyone on your message boards speak of having muscular dystrophy as well as CHF. CHF is one typical end result of Becker and Duchenne MD and I would expect more people to be represented here. I really would like to know of other people with MD and CHF who are on Coreg and how they are responding to it, what other natural supplements they have taken and response and just any pointers they have from experience with MD and CHF?
     Before the diagnosis and the medications to treat Todd, he actually felt much better but was quite fatigued every day, all day. Now he feels worse than ever and I understand that Coreg can do this to you for the first 6 months. What if his body never adjusts because of the MD? Please help with any info that you can.

Jon's June 25 reply to Carol G's June 25, 2001 - Hi Carol, For some reason I get that question a lot about CHF doctors. I can only list doctors who choose to be listed. I have no magical database fairy who can summon up the name of every CHF doc in the country for me to list. <lol> If every reader here asked their CHF specialist to list their practice on my CHF specialist page, it would quickly grow more comprehensive.
     I don't know if anyone is listed at Me Too who has muscular dystrophy or not but this is precisely the type situation I started that section for. Give it a look, and don't forget to use the search engine and search The Archives as well. More about how to use Jon's Place can be read at Using Jon's Place! ;-)
     If Todd was diagnosed on May 1 of this year, he has scarcely had time to adjust to Coreg yet. He might ask his doctor to drop his ACE inhibitor dose somewhat while Todd tries to adjust to Coreg. Todd might ask for a different beta-blocker like Toprol XL and see if he tolerates that better. Todd might alter the timing of his Coreg dose, taking it separate from his other meds by 90 minutes or so to see if it is an interaction irritating him. He must be sure to take Coreg with food, per the drug instructions, which he should also read. Links to such information are found at the top of the Coreg page. He should also have the usual routine tests done to see if there is a problem with any of those levels.
     My point is that he - and you - should avoid looking at his MD too quickly as a reason for problems with CHF and CHF meds. They may or may not be related so consider both possibilities, but only one at a time. <g> You should also stop looking so far down the road, like when you say, "What if his body never adjusts [to Coreg] because of the MD?" What "could be" is just another source of stress - unnecessary stress at this point. Remember Matthew 6:34. Take this disease one day at a time like we all must do to deal with it. Concentrate on the here and now while playing the odds about long-term consequences.
     The odds are that Todd will accommodate Coreg or another beta-blocker in time. So relax and work with the doc to raise the dose very slowly, try the things I mentioned and some of the things I am sure others will suggest, and give these things time to work or not work before getting worked up yourself. <g> Jon.

Janet, June 25, 2001 - Hi, I just spent 12 days in the hospital with a friend who was diagnosed with CHF. I am trying to find any info that I can to help him and his family. He was put into a induced coma for 5 days. They brought him home and he landed back in the hospital 4 days later with breathing trouble. Please excuse not using the proper terminology. I am tying to learn as I go along. His heart was at 15% and they said it is the size of a basketball. The problem I am having is getting it through to him what is going on and how sick he is; stubborn bikers. Also, I know that no one can tell me how much time he has but are we looking at less or more than one year? I am trying to learn as much as I can to help him out.

Jon's June 25 reply to Lucy's June 25, 2001 - Hi Lucy, I haven't looked it up but right offhand, I know that Coreg and magnesium can cause diarrhea, as can too much diuretic (Lasix). Make sure her diet has not changed as well before juggling meds with her doctor. Be sure she is having all the proper routine tests done since too much potassium or too-high digoxin level can cause diarrhea. Jon.

Jon's June 25 reply to Sherry's June 25, 2001 - Hi Sherry, Please understand that I am just shooting in the dark here with some possibilities; There are many other possibilities as well. I would strongly suggest that you have his blood tested for levels of all the usual things. See the Routine Tests Page for some idea of what I mean, especially noting the symptoms that improper blood sodium levels can cause, among other imbalances. I would have these checked at the least, as quickly as possible. Other possibilities include new artery blockages, blood clot, arrhythmia, reduced heart function, and more but I have no idea if it is any of these or somethig else entirely, maybe something neurological. I am not a doctor. Jon.

Mary, June 26, 2001 - Hi, I am looking for advice where to find a good cardiologist in the Minneapolis area. My dad has CHF and I don't believe his current doc is doing the job. Also, he had a recent test on his kidney that showed it is damaged. Can it be damaged from the CHF or meds? Please help, we need to get him on the right track. Thanks, Mary.

Janet, June 26, 2001 - Hi, I'm new to the idea of a message board. My husband has an ICD, takes Coreg and Mexitil (since 1/2000). Now his EF is 19% and we are scared! What is the experience of taking taking Mexitil when you have cardiomyopathy? Janet.

Roseanne S, June 28, 2001 - Hi, My husband is still in the hospital. He had a right heart cath inserted through his neck to measure his pulmonary pressures. The doctors and nurses were shocked when it showed his pressure was 39%. He is feeling great and walking around the unit, so they thought it would be much lower or normal.
     He had been on a dobutamine drip for 5 days. They changed the drip to milrinone and gave him Lasix. His pressure has dropped to 32%. Can someone tell me what it should be? I only saw nurses last night and when I asked they would only say it was very high and should come down as they get the water off him. I checked The Manual but I am not sure if I am looking at the right information. Thank God for this site, it has been a lifeline for me.
     My husband cannot tolerate any noise. He was slightly this way before CHF but now it is 100% worse. It is almost like he is autistic. It is especially bad when he is holding water or is potassium-low. He can't tolerate the air conditioner, television, ceiling fan, or even me turning the pages of a book. My husband has not been able to read this site or post, because the computer drives him crazy now. He used to spend hours on it before CHF. Does anyone else have this problem? I was recently sent a card that has become my motto:"When you are going through Hell - Keep Going!" Prayers and best wishes to all who are going through this trial, Roseanne S.

Jon's June 28 reply to Roseanne S' June 28, 2001 - Hi Roseanne, I believe resting right ventricle pressure should be is 15 to 25 mm Hg. Pulmonary artery systolic pressure is pretty much the same as RV pressure. Diastolic pressure is higher from the pulmonic valve closing. See this page for PPH information.
     The noise sensitivity sounds drug-related to to me. Has Lasix been replaced by anything for awhile to see if it is the culprit? Jon.

Ann, June 28, 2001 - Hi, I just want to wish everyone out there dealing with CHF the best of luck. My mother has been gone for a month and I still ache for her. It amazes me to look back and think of all that we went through. Now that she is gone I don't even know what to do with all my time. I want you all to know how brave you are. I wish I can say that you fight till the very end but that's not true. The end is about giving someone you love peace. Mom fought for 8 years. I'm glad she doesn't have to fight anymore.

Stacy W, June 29, 2001 - Hi, I am new to this site. In fact, I am new to using the computer. My 79 year old mom lives in Florida. She had a massive MI in January of 2001. She had a cath done 36 hours later, but only by demanding her transfer to a facility that could do caths. She had 4 stents placed but the damage to her heart was extensive. At that time her EF was 20% - not great, but we were happy.
     However, after she was moved from ICU to a telemetry floor and I had flown back home to Michigan, she began experiencing severe SOB. She was unable to even talk to me on the phone for longer than a minute. I kept questioning my family what the doctors said and they were all told she was fine. They did want her to go to rehab. I kept asking about Lasix but the doctors said she couldn't go on it because it made her pressure too low.
     My mom refused rehab and was home for a day and half before she had to go back to the hospital because she couldn't breathe. My dad took her to a different hospital (her third) and she arrested right when they got there. She also arrested with her initial MI. Due to this second cardiac arrest, her EF was 6% to 10% when she was finally discahrged from this hospital in March. She came home on Lasix and was recently put on digoxin (Lanoxin).
     She has been back to the hospital twice for SOB but came home after a day or two each time. Now she has been in the hospital since the June 17. She had 1400cc of fluid aspirated from her right lung on the June 18. She has also been on Lasix and dobutamine since admission, with occasional doses of Bumex. Her fluid retention is not improving, although she says her urinary output is okay. She had an ultrasound of her lungs on June 27 and ont he 28th had a liter of fluid removed from her right lung again. Her blood pressure has been very low, 70 to 80 over 40 to 50. She is extremely tired, coughing, and feels rotten.
     I am wondering if anyone knows if this fluid in her lungs is going to be a constant now? It was only 10 days between the 2 aspirations. They are also having trouble getting her off dobutamine. Is this a common problem? I have heard about patients going on dialysis. Is that where we go from here or would that even help her pulmonary problems? My mom may be 79 but she is so brilliant and still does her crossword puzzles in pen. I am wondering what end-stage CHF is like. Are we there?
     It is so hard being so far away. Her doctor has no bedside manner and he doesn't like talking to family or answering our questions. He has nixed my dad's idea of taking her to a different facility as too dangerous. My dad is scared to try and could not live with the guilt if he did try and something happened. I know my sisters would never forgive him if anything happened. I am having a complicated pregnancy so I am unable to travel at this time. I did go down in January and again in February for a month total. Although my parents have lived far away for 20 years, I have visited a lot and talked nearly every day with them and told my mom always that I love her. So I am as okay with not being there as is possible but I worry about them facing this alone.
     I am sorry for babbling on. I would appreciate any input or advice anyone can offer. Many thanks, Stacy.

Susan B, June 29, 2001 - Hi, First, thank you for this web site. My husband's first doctors did not give us the information we needed to understand his illness. They did not even tell us that he was in heart failure for 2 months after he was told that he was in a-fib. I am a lawyer and doctors have a tendency to treat us and our family differently. Some doctors spend half of my appointments talking to me about malpratice and I don't even pratice that type of law.
     We just changed to a CHF doctor. He spent over 45 minutes with us answering questions. At the regular cardiologist's office we only met with the doctors 3 times except in the hospital in the last 6 months. All of his other appointments were with the nurse. Moreover, we had to ask all the questions and they did not want to answer.
     For example, I read here and at other web sites that rehab could help him. When we asked about it, the nurse went out and asked the doctor and came back and said yes, it would help. Next we asked about doubling his Coreg dose another time because of his weight, and the nurse went out and asked the doctor again. She came back in and told us we could try the higher dose.

Susan B, June 30, 2001 - (Sorry, I was not finished writing.) My husband is doing very well but he wants to go back to full duty as a fire fighter. This upsets him more than anything else. His EF is only 15 to 20% but he feels great and is only a little short of breath when he pushes it. The new CHF doctor is doing the oxygen test on him to get more information. I have been asking for this test for 3 months. The nurse merely looked blankly at me when I asked about. One of the most striking differences between the cardiologist and the CHF doc is the questions about quality of life. I love the CHF doc's questionaire and it appears to be scannable.
     My husband loves fighting fire and he believes that he can get well enough to go back. I am not so sure, but want to support him in his efforts to improve. There are days that he does not feel up to going back but most days he feels well enough to go back. However, he has been working in one of the busiest areas in town, going on 3 to 5 calls a day for the last 15 years. He has saved a lot of lives and helped a lot of people and animals. All he has ever wanted to do is be a fire fighter and now, who knows? He can retire in November this year.
     I know that other people have bigger problems but thanks for letting me vent. I am having a hard time dealing with my husband's illness. He is living in denial and I am worrying for both of us. I am not sure what will happen to his great outlook if the doctor tells him that he can never go back to fighting fires. For now, he is on light duty and not running in burning buildings but he misses the taste of smoke and the thrill of saving people.

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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