The paperwork never ends The Archives
Loved Ones - October, 2003 Archive Index

Glenn 10-2     seek chemo/CHF patients
Arlene 10-2     does anyone have a child with CHF?
Kate's 10-2 reply to Glenn's 10-2     chemo/CHF experience
Joy K's 10-2 reply to Glenn's 10-2     chemo/CHF experience
Anita S 10-5     seek surgery experiences
Glenn 10-5     seek chemo experiences
Jon's 10-5 reply to Anita S' 10-5     surgery with CHF
Kate's 10-6 reply to Glenn's 10-5     recovery
Nancy's 10-6 reply to Glenn's 10-5     recovery
Cheri 10-7     should I be worried?
Jon's 10-7 reply to Cheri's 10-7     Coreg adjustment
Annie G's 10-8 reply to Anita S' 10-5     a possible alternative
Dina 10-9     seek heparin experiences
Susan B 10-14     it sure is frustrating
Francine 10-14     update, thank you
Kate's 10-15 reply to Susan B's 10-14     a couple of things
Cheri's 10-16 reply to Jon's 10-7     still trying to cope
Jamie 10-22     seek financial aid resources
Judy H 10-28     seek similar experiences
Tracy 10-28     can someone answer these questions?
Susan B 10-29     incredibly good news
Neel 10-31     is this good?

Glenn, October 2, 2003 - Hi, My wife Diane was diagnosed with CHF recently. She suffered from ovarian cancer several years ago and beat it twice. I was wondering if anyone has any experience with chemo therapy and delayed CHF? Thanks.
Jon's note: See Me Too and The Beat Goes On.

Arlene, October 2, 2003 - Hi, Is there anyone out there who has a child with CHF? My son is 15, and has Muscular Dystrophy. He has been very healthy (and walking) until 2 weeks ago. Our world fell apart. He was in ICU for a week and diagnosed with CHF and cardiomyopathy. He is home now and attempting (we both are) to accept this huge life change.
     He has gone to school twice, for a half day. I feel like right now it is overexerting him, but he insists. He is very tired, generally does not feel well, and complaining of back pain. He is depressed and I feel like he wants to give up (he has actually told me this). He is on a slew of meds with more to start next week. If I could get some feedback from someone in the same position, I would really appreciate it! Thank you, Arlene in New Mexico.

Kate's October 2 reply to Glenn's October 2, 2003 - Dear Glen, Unfortunately there are lots of us. I was diagnosed with cardiomyopathy and CHF some 13 years after chemo. I was evaluated at the Cleveland Clinic in 1995 and they told me that chemo accounted for many of their patients. I have been battling CHF for 9 years now. Every year seems to bring new weapons for the battle so don't grow too discouraged.
     If your wife has beaten cancer twice, she has already developed the coping mechanisms and has the kind of strength it takes to deal with CHF. Best of luck to you both. Kate.

Joy K's October 2 reply to Glenn's October 2, 2003 - Hi Glenn, I was diagnosed with breast cancer in 1992. Following a mastectomy and removal of 23 lymph nodes, I received chemo for 6 consecutive months. Among the 3 chemo agents I received was adriamycin. In 2001 I was diagnosed with cardiomyopathy. The cardiologist maintains this was the result of receiving adriamycin. The oncologist maintains I was too far out in time.
     I had contacted a very bad virus about one year prior to my diagnosis of cardiomyopathy; maybe it was a combination of both. During my heart cath, a biopsy was not taken. My EF was 15% and has risen to 38%. I am scheduled for another echo in February of 2004.
     The chemo agents also affected my skeletal system and my liver - nasty drugs. Before and after my chemo treatments, no echos were done. It is almost standard procedure now that echos are done in order to hopefully prevent heart problems. I also have mitral regurgitation, courtesy of cardiomyopathy. I would be happy to answer any questions regarding my chemo treatments or my cardiomyopathy if it can help in any way. Joy.

Anita S, October 5, 2003 - Hello, I am asking for some advice from you experts on the forum. My husband has a tumor in his kidney that the doctor wants to take out. It has been there for a few years but is now growing. He also has polycystic disease but they think this could be cancer. They can't tell until they remove the tumor.
     Phil has CHF and is mostly in class 3, but sometimes is in class 2. We were wondering how safe it is to have surgery with his heart the way it is. He was told by a heart doctor a few years back that going under anesthetic could be dangerous for him. Also, do you know if he will be on a heart-lung machine during surgery? I thought that I saw on one of the kidney sites that he would be but I can't find it again.
     Of course, I am going to ask his cardiologist and nephrologist what they think. Since he goes to the VA, it will take awhile to talk to them. Maybe some of you who have had surgery or know something about partial nephrectomy can help. Thanks.

Glenn, October 5, 2003 - Hi Kate and Joy K, or any others who received chemo. Are you currently in possesion of an ICD or similiar implant? Do you ever recover?

Jon's October 5 reply to Anita S' October 5, 2003 - Hi Anita, As if Phil hasn't gone through enough already! I am not an expert on this but I do know that a CHFer's ability to handle surgery is a fairly individual thing. One person may do well while another person in very similar condition may not. I hate to be so wishy-washy but it's an honest comment at least. Pray hard. Jon.

Kate's October 6 reply to Glenn's October 5, 2003 - Dear Glenn, I have an ICD. The question about recovery is a loaded one. Some people with viral cardiomyopathy do get better. I have even read that a study group of patients given a heart assist device early in their diagnosis made a full recovery. Those of us with chemo damage, I've been told, are in the game for life.
     I think you need to focus on what can be done to restore your wife's health to a level where she can function and enjoy as much of things she wants to enjoy as fully as possible.
     When I reached the end of my first 5 years in remission, I asked my attending physician if I was cured of the cancer. He told me it was a word that simply wasn't used with my type of cancer. So, I am perfectly content to say I've been in remission for 21 years. I won't let semantics get in the way and neither should you.
     Focus on her feeling better instead of dwelling on the word "cured." There are lots of things to try and all should be given sufficient time to kick in and do some good. Don't look for any instant miracle. Patience is something both of you will need in large doses. For now put "cure" and "death" in a drawer and concentrate on "feeling better" and "life." Kate.

Nancy's October 6 reply to Glenn's October 5, 2003 - Hi Glenn, My husband developed CHF in 2000 after undergoing chemotherapy in 1998/99 for acute Lymphoblastic Lymphoma. He was hospitalized in 2000 with CHF but since then he is seeing a CHF specialist and has steadily improved. He is back to working full-time and he also plays golf. He has not been hospitalized since that episode. God bless, Nancy.

Cheri, October 7, 2003 - Hi, My husband started Coreg last Wednesday. He was doing okay without it, but the cardiologist said it was needed. Anyway, he has noticed swelling in his feet last night and again this afternoon. He did say he had consumed more coffee than usual those 2 days. Should I be concerned? He was only diagnosed with CHF this past summer and we are still adjusting to everything. Thanks.

Jon's October 7 reply to Cheri's October 7, 2003 - Hi Cheri, It is not uncommon for CHFers to decompensate (have their heart failure symptoms get worse) when they start Coreg or when the dose is raised. Stay alert to this but don't be scared. If you or your husband think it is needed, call his heart doc and see about taking extra diuretic (like Lasix) or about adjusting other meds until he gets used to Coreg. Jon.

Annie G's October 8 reply to Anita S' October 5, 2003 - Hi Anita, It's worth asking the doctors if your husband is a candidate for a kidney biopsy done by an interventional radiologist. The biopsy is done in either CAT Scan or Ultrasound departments, with the patient being given anything from morphine to "almost asleep" meds, then a needle is passed through the abdomen to the kidney and a sample sent to pathology. It's an outpatient procedure where I work. Once the biopsy results are back then you can make a better decision on whether or not the tumor needs removal. I hope this helps.

Dina, October 9, 2003 - Hi, My mom is 74 years old and was diagnosed with lymphoma in March. After 3 chemo sessions, she developed atrial fibrillation. After the fifth chemo, she went into heart failure. She had clots in her legs and lungs but she's doing okay now. Her EF went from 68% before chemo to 40%.
     I've read that some of you have the same condition as my mom. You see, she has been placed on lovenox, a kind of heparin, because of the blood clots. Although Coumadin is the standard long-term prophylaxis, there is a new study that found the safety and better efficacy of heparins than Coumadin in cancer patients.
     However, in my mom's case, she also has atrial fibrillation which makes her a high risk for stroke. With this condition, Coumadin again is the standard long-term prophylaxis. Coumadin has many side effects and drug interactions, and I am afraid to change her to this. However, I couldn't find any study about heparins and stroke prophylaxis in patients with atrial fibrillation. Has anyone here been on any heparin agents long-term for any indication? Thanks.

Susan B, October 14, 2003 - Hi all, I need to vent a little. My husband George, has DCM. He does very well most of the time. He doesn't look ill or act ill most of the time. He has a hard time with gout this year and nose bleeds. He is very careful about what he eats so that he doen't have too many gout attacks.
     Last weekend he ate the food at his work. He was a firefighter, but now he works at 911 dispatch. The next morning he was having a gout attack and could barely walk. He took the meds as planned by the PCP, then he started getting ill. His PCP was out of town but his office wanted to see him to check his blood work. While we were at the doctors' office his nose started to bleed. I was so surprised that the doctors' office had nothing to stop it.
     George held his nose and it slowed down, but it did not stop. After awhile, although his nose had not stopped bleeding, the nurse asked us to wait in the waiting room or leave. I guess they needed the room. She told us that if it did not stop, we needed to go to the ER. George said that he wanted to go home so he held his nose all the way home (about 15 minutes). I dropped him off and went to get his new meds. In about 5 minutes he decided that he needed to go to the ER. I rushed home and we spent the next 3 hours getting his nose to stop bleeding. His INR was low - only 1.9. He is very good with his meds including the Coumadin.
     This is the third time this year we have been to the ER for nose bleeds. The balance is so finely tuned that one thing throws it all off. Now he is feeling better and he is running me to death. I made him slow down. He wanted to go to a concert Friday night, a soccer game (professional) on Saturday night, and to the Renaissance Festival all day Sunday. I just am not up to running that much any more. When he is in this mood, he runs until he drops and then he sleeps 16 hours a day to catch up. I got him to give up one of the three and he is doing fine today.
     This week he has to see about having some dental work. I don't know how that will work out. We have been planning for this with his doctors. The dentist insists on a specialist to remove two teeth for a bridge. I guess it is better to go slowly and do it right.
     I think I am having one of those days where I wish that I was dreaming and I keep thinking that I will wake up and this will all be over. How long does denial last? I do fine until he is better and the pressure is off. I am smilling because he could be doing much worse. He takes his meds and tries his best to do everything he needs to do.
     I think that I am tired of explaining it to everyone, why I have to take him to the ER. How can be he ill when we just saw him and he looks great, they say, in fact he looks better than before you said he was ill. I'm getting better with the nose bleeds. I don't freak out until after he is better. The first one, he bled through his tear ducts and freaked us both out. Thanks for letting me vent. Jon, thanks for everything. Susan B.

Francine, October 14, 2003 - Hi, I just wanted to say thank you to all the wonderful people here. I gained so much from reading here and even had folks reach out to me via e-mail. My mom passed away on October 5, 2003. It is thanks to everything I found here that I was able to see to her comfort needs right up to the end of her life. I will stop in from time to time and if I can ever offer anyone any help I will be glad to. God bless each of you always. Francine.

Kate's October 15 reply to Susan B's October 14, 2003 - Dear Susan, A couple of things. A new drug called Exanta (ximegalatran) is due on the market next year to replace good old Coumadin. It is supposed to be less toxic and have fewer problems.
     Also I remember reading about a patient who got a machine she could use at home to check INR readings and adjust meds accordingly. Her insurance company picked up the tab when she could prove that the machine was cheaper than all the hospital visits and blood tests. That's something you might want to ask your husband's doc about and your insurance company - food for thought.
     Look on the bright side - it's better to have someone who wants to do things than someone who just sits around feeling sorry for himself. Kate.

Cheri's October 16 reply to Jon's October 7, 2003 - Hi and thanks for the info, Jon. My husband is doing better. He still has a little swelling, but not as much. His weight gain is minimal and his blood pressure and pulse readings are okay. He has an appointment with his ICD doctor Monday and his cardiologist next Friday.
     This whole ordeal has really thrown me. I guess I'm still in the "feel sorry for me" stage. Our 16 year old son has done well with all that has happened. We talked a lot while his dad was recuperating at the Extended Care Facility. I am trying to keep things together, hoping his SSD will come through. Anyway, thanks for letting me talk.
Jon's note: It would throw anybody for a loop!

Jamie, October 22, 2003 - Hi, My mother in law had a heart transplant 9 years ago and has since been kicked off insurance. She is having problems swallowing meat and has lost 30 lbs since April, but can't afford to pay cash to go to the doctor. Does anybody know of any transplant assistance programs either for perscription and/or other medical bills? Thanks so much.
Jon's note: Be sure to contact the manufacturers of each drug and the hospital social worker - all can help to some degree at least.

Judy H, October 28, 2003 - Hi again, It's been some time since I've posted. My husband Robert has a bad time with CHF this year. He was admitted into the ICU with pancreatitis, which resolved itself, along with a lot of fluid on his belly.
     After being moved to a step-down unit, he went into acute heart failure while eating breakfast and his O2 dropped down to 60% and his blood pressure dropped to the 60s. He is back in the ICU with 4 to 6 liters of fluid on his belly, now due to diastolic heart failure. It's coming off slowly and they are only using oral Lasix because his kidneys are weak.
     With bi-pap treatment they helped his breathing, so he is now on a face mask plus a nasal cannula. His appetite is good but understandably he is depressed. He got a bi-ventricular pacer/ICD (Medtronic Marquis) back in August and at first seemed better, but then this right-sided heart failure came into play.
     There are not a lot of options left now, and outpatient inotropes loom large in the future. I have just used the last of my vacation days. There have been a lot of cuts at the company I work for, since it was acquired by an out-of-state parent company in August. Prior to this hospitalization, (a week now), I was putting in 45 hour weeks. Moral at work is quite low because of numerous job cuts. You get a phone call at work to tell you that you no longer have a job - no face to face!.
     My immediate supervisor is supportive but I actually have to call out-of-state and report off to an answering machine! I feel my job is in jeopardy as it is. I am hoping to talk to a social worker at the hospital about family medical leave. I need time now to do what I have been doing, but I need to protect my job as well. When the business was privately owned, this was never a problem. I would have had time off with pay.
     I would appreciate anyone else's experiences with this. Also, anyone whose loved one got the bi-ventricular pacer and who did not get the miracle cure that Medtronic and Guidant seem to promise in their brochures, I would like to hear from as well. Thank you for listening. Judy H.
Jon's note: Get that FMLA going as soon as humanly possible!

Tracy, October 28, 2003 - Hi, My first time here. I have some questions. My hubby was diagnosed with class one diastolic dysfunction. His ejection fraction is 40%, his heart is slightly hypertrophied and dilated. Three of his four valves leak.
     This was diagnosed about 6 months ago and at that time he had no symptoms. Now he has shortness of breath at night, swelling of the ankles, and is short of breath upon mild exertion. Can someone tell me in layman's terms if this is congestive heart failure? If so, what stage? Thanks for taking the time to read. Have a happy, healthy day.
Jon's note: Have you had a chance to read The Manual ?

Susan B, October 29, 2003 - Hello all, We just got back from my husband's CHF doc and we have very good news. My husband's EF was over 50% again (it has been there for over 1 year). His heart is back down to normal size. He is less than 3 years out from when he was diagnosed with DCM and an EF of 15 to 20%. His doctor was so happy to tell him that he is part of the new history of treatment for CHF. Just a few years ago patients would not have had their EF go up that much.
     My husband is feeling fine most days. I saw the posts where people's numbers are great but they feel bad. The gout and nose bleeds have been our problems this year. Last Thanksgiving he ran so much that he had to rest an extra day. As you might see from my other recent posts, he has been running me to my limits.
     We started making plans to reduce some of the meds. Many he will still have to stay on, but to get rid of even 1/2 a pill a day was exciting to my husband. I am in shock a little bit. It is like the beginning of this I never expected that he would or could improve so much.
     Thank goodness that he did not have to take disability! He just transfered from fighting fires to dispatching fire trucks. The new plan is for him to start a training program and lose some weight and see if in 6 months to 1 year if he is well enough to return to fighting fires, something I never thought he would be able to do again. I am not sure that he will fight fires again, but after the discussion with the doctor we are going down that road to see if he is up to it.
     I hope this gives others hope. CHF is so hard, with the ups and downs. With the agressive treatment program and his hard work, we are seeing results that I never expected. It feels like a weight is lifted. Now, this does not mean that we are taking down the weight chart for his daily weight, or stopping any of the other things that got him here. I only hope that he doesn't over do it. One step at a time, and he has given himself 1 year on this new path.
     Thank you to everyone here for all of your advice and wonderful suggestions. Jon, thank you for the info. If I had not found this site, I don't think he would be doing so well. We would not have changed to Dr. Porter, whom I can't say enough wonderful things about. All this information we have learned here is still put to good use every day, as I hand out the address 2 to 5 times per day. Last night I had to give it to my brother, who at 43 years has been diagnosed with DCM with an EF of 25 to 30%. I only hope that he does as well as my husband with the treatment. You are all in my prayers. Susan B.

Neel, October 31, 2003 - Hi, My brother has DCM. He's 52 years old, the same age as my father when he died with CHF. This may be hereditary - we don't know. In February his EF was 18%, then it went up to 25% some months later. Now it's 45%.
     Also, he had his stomach tapped a couple of weeks ago, and they drained 5.3 liters in 40 minutes. For the first time, I'm feeling optimistic because he says he feels better and can breathe deeply again. Are these good signs? If he continues to retain so much fluid, is it okay if they continue to tap his stomach? Thanks, Neel.
Jon's note: I wonder why IV diuretics weren't used.

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