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

Kim H's 5-1 reply to Kelly M's 4-29     our experience
Kelly M's 5-1 reply to Jan M's 4-29     what about these symptoms & more
Brenda H's 5-1 reply to Kelly M's 5-1     doc suggestion
Nan S 5-1     seek CHF doc near Stony Brook
Myrtle C's 5-1 reply to Kelly M's 5-1     depression, specialists
Vonda 5-4     is insomnia heart failure-related?
Kelly M 5-5     thank you and more
Jon's 5-6 reply Vonda's 5-5     my experience
Vonda's 5-7 reply to Jon's 5-6     thanks and more
Diana 5-19     seek advice, suggestions
Shery C's 5-21 reply to Diana's 5-19     maybe talk to a hospice person
Diane's 5-21 reply to Shery C's 5-21     seek views on disease progression
Nan 5-22     seek suggestions
Crystal S' 5-23 reply to Nan's 5-22     some suggestions
Lana 5-29     seek suggestions on husband pulling away
Susan B's 5-30 reply to Lana's 5-29     my experience and more
Isabell's 5-31 reply to Lana's 5-29     my experience
Julie 5-31     seek Coreg information
Jon's 5-31 reply to Julie's 5-31     Coreg information

Kim H's May 1 reply to Kelly M's April 29, 2003 - Dear Kelly, My 79 year old dad has had CHF for the past 7 years. In February of this year he was hospitalized for a-fib. The doc said his heart was very weak and that he needed a pacemaker/ICD, hoping it would be enough. The implant procedure went well and his pacemaker was working fine but he kept getting weaker and weaker. He became bedridden and could not walk more than 10 feet. He was hallucinating and had mental confusion starting about March 20.
     April 16, with his symptoms getting worse, we took him to an ER and found out he was in kidney failure, his heart failure causing his kidney failure. He had fought heart disease for the past 14 years. Please have the doctor check your dad's kidneys, since the symptoms of kidney failure are similiar to CHF and we just didn't make the connection.
     Also, I wish we had found a CHF specialist in February, although I believe now his heart just couldn't take any more. Thank you to Jon too, to whom I was frantically writing to find some answers.
     Kelly, I hope your dad turns around. Don't give up! My prayers are with you and your family. Kim.

Kelly M's May 1 reply to Jan M's April 29, 2003 - Thank you Jan for posting your info. This whole thing is so confusing. I'm just not sure where to turn. I'm sure that getting him to a CHF specialist is the way to go versus a general cardiologist. My dad is afraid to change because this man has been his doctor for over 10 years; I'm not.
     I've made him an appointment and we go to the specialist on 5/20. I at least want someone else's opinion. This last trip to the hospital resulted in another sleep study and they confirmed what we already knew: He has severe sleep apnea. We did get him a new updated bipap machine. However, he tells me that his symptoms are unchanged.
     His current doctor stated back on February 3 on his second admission this year for CHF symptoms, after doing a heart cath, that 2 of the grafted arteries are collapsed. He is only working with 2 good ones. That is another huge issue. They suggested gene therapy but he was declined because of the a-fib.
     Has anyone experienced someone with CHF having reddened skin almost like a sunburn? What about constant headaches? I'm guessing the headaches are from some of the meds but he says they are 24/7 and bad. I can't wait to check out the CHF specialist. Does anyone have a CHF specialist in Houston affiliated with the Texas Heart Institue that they can recommend? I've found one but would love to hear from anyone who has personal experience.

Brenda H's May 1 reply to Kelly M's May 1, 2003 - Hi Kelly, I am currently using Dr Torre from Methodist Hospital, but I also understand he is affiliated with St. Luke's. I have only seen him once and he has scheduled me for tests tomorrow. My mother and sister went with me to the visit and I can tell you that we were all impressed with him and his staff. I have another visit next week and will be happy to let you know what we think then, if you want. E-mail me if you have any questions or want his number. Good luck with your father, Brenda H.

Nan S, May 1, 2003 - Hi, I am posting this message hoping one of you good people can help me. My husband was hospitalized because of a car accident in February. As a result of doing an echo, the doctors told us he has an ejection fraction of 30 to 35%. He had no previous history of heart problems, had no symptoms, and has been on Cozaar for blood pressure for about 10 years.
     Since March he has been on Toprol-XL at 75mg once a day, Plavix for a stent that was put in at the end of March, and Cozaar at 50mg once a day. He had been on Imdur and Altace but was taken off both because of severe allergic reactions.
     Since the cardiologists began treating my husband, he is very tired and very withdrawn. I would like us to get a second opinion but I have not been able to locate a CHF specialist in our area. If anyone knows of a good one in the Stony Brook, New York area, could you please e-mail me? Many thanks.

Myrtle C's May 1 reply to Kelly M's May 1, 2003 - Dear Kelly, I am sad for you and your family. Your dad does need to see another doctor and his fear is normal. I just wonder if he has given up on his life. Having as many health problems and being so heavy, his life is very difficult. He is obviously depressed. With depression, our thoughts change and life can seem to have no purpose. Add health problems and life can seem impossible to cope with. I know because I have that problem.
     The Zoloft may need changing. Celexa, among other antidepressants, could give him more help with that problem. I encourage you as you try to find help for him. At this point I think any cardiologist whose practice is at least 50% heart failure patients may have a different idea on your dad's treatment. This could make all the difference.
     My prayers are with him and with you. What a great daughter you are. He is strong to be able to cope with the depression and everything else. I reach out to you with hugs and love, Omie (grandmother of 3).

Vonda, May 5, 2003 - Hi everyone, I just want to say that it has been a year since doctors gave my mother only a couple of days to live and after improving, only 4 months. God is so merciful. Of course, I give praise to Him, but we also have a wonderful CHF specialist awho has helped us through more than any other heart doctors or lung specialists.
     She has a number of health conditions but right now, insomnia seems to be the worst. Is this heart failure-related? That is the one thing our CHF specialist can't seem to answer. She won't take an antidepressant, which I truly think she needs. I have noticed in the past couple of months that her personality has changed from humble to grumble. Really, she has always been a peaceful, quiet person who now seems to enjoy nagging my brother, sister, and myself, along with our children.
     Could this be related to CHF? Thanks to all you wonderful people and to Jon, who give so much help.

Kelly M, May 5, 2003 - Hi, I finally got the chance today to read some more of the replies to my two previous posts. I cried. I am very touched to see so many people keeping me and my family in their prayers. For so long I've lived under the old saying, "ignorance is bliss." I've decided to become educated about my father's condition because I don't want to loose him.
     I'm a single mother of two (ages 2 and 7) girls and taking care of my dad. I think my mother and I have finally convinced him to permantly move here to Houston. Thank you, God. I'm hopeful that his condition is not as bad as I think or as bad as he feels. I insist that he fight.
     Thank you Jon, for this web site. I truly think God pointed me in this direction. It is, to say the least, amazing. May God bless each and every one of you. Keep the posts coming - it helps. I'll keep you posted after his 5/20 visit with the CHF specialist.

Jon's May 6 reply to Vonda's May 5, 2003 - Hi Vonda, I started suffering severe insomnia about the same time I started taking Coreg. However, it turned out to be a drug interaction between Coreg and Ultram in my case. Many CHFers suffer insomnia though and it is quite possible it is often caused by either meds, meds interactions, or by the effects of heart failure itself.
     Benadryl helps many of us and is generally safe for CHFers to use, but always ask both the doctor and the pharmacist about safety and potential interactions with current meds.
     For what it's worth, lack of consistent sleep can mimic depression just as depression can cause lack of consistent sleep. Don't jump to the assumption it is depression without trying ways to help her sleep first. Also, medical doctors often prescribe an anti-depressant as a sleeping pill. In my opinion, that's a really bad idea; it was in my personal case as well. Jon.

Vonda's May 7 reply to Jon's May 6, 2003 - Thanks Jon, Your reply was very informative. My siblings and I all have our different roles in Mom's life. I, however, am the one that tries to find the solutions to her problems. She refuses to take an anti-depressant. My sister, brother, and myself are all on Zoloft; all since my dad passed away 4 years ago with a heart attack. My mother is determined to depend upon the Lord to see her through. Please pray for my family that we can be as strong as her and learn to depend on God's Word. Thanks, Jon!

Diana, May 19, 2003 - Hi, I haven't posted in awhile because of my husband's failing health: He's 86 and has CHF and COPD, and he also has a pacemaker. He is class 4 end-stage of the disease.
     I started on Family Medical Leave the first of April. My last day of work he called me to get him to the ER, so I guess it came none too soon, and was able to stay home with him for a month before being called back to work and am now working part-time. My 22-year-old daughter and I are working around her schedule so someone will be here with him most all the time.
     Before I went on leave he seemed to get around okay on his own, was able to walk from family room up 3 steps into the kitchen without too much trouble. Now he can't walk 2 or 3 steps without getting out of breath and having trouble. Coming up into the kitchen and the main area of the house is getting to be such a problem for him. I just wondered if this is "normal" at this stage of the disease.
     He was in the hospital in March and lost quite a bit of fluid, got down to 261, but has gained back to 276 even though he's on Demadex, and HCTZ 3 times a week. His blood pressure is low, running around 90/60 and more fluid pills make it go too low. I keep wondering what to expect next.
     The doctor had recommended hospice but my husband doesn't want to go that route yet. Does anyone have any answers or encouragement for us? Thanks!

Shery C's May 21 reply to Diana's May 19, 2003 - Hi Diana, How stressful for you. Here's a big hug going your way. I suggest you call Hospice and explain the situation. I bet they deal with this all the time. Perhaps they have someone who could come out and talk with your husband or give you some idea what to say to change his mind. Denial is a great coping mechanism but there comes a time when facing facts is necessary. I hope this helps, Sheryl C.

Diana's May 22 reply to Shery C's May 21, 2003 - Hi, Thanks for the hug, Sheryl! I sure do need a few and so does my husband. When our doctor first talked about hospice care, someone came and talked with us and she's the reason my husband doesn't want to consider it now. She did not represent hospice in a very good manner, was very abrasive and frankly got on our nerves greatly at a time when things were already stressful.
     Our home health nurse said she knew someone else from hospice that might come but my husband is just not ready for this. I just wanted to know if his disease is progressing rapidly or slowly (normally) for the stage he's in. Every day he seems a little worse and more dependent on us for everything. It's just very wearing and worrisome for all of us.
     Thanks for sharing your thoughts and for your concern - I appreciate it! You take care.

Nan, May 22, 2003 - Hi, I have posted a few times about my husband. He was diagnosed with asymptomatic dilated cardiomyopathy (EF 25%) three months ago after a car accident. He also had a stent placed in his LAD.
     Our current biggest problem is that he is not able to tolerate any medications. So far he has been taken off Imdur, Altace, and Plavix. He is currently on Cozaar and Toprol-XL. The Cozaar which he has taken for many years to control blood pressure is now giving him a terrible cough and a fever. I don't believe his doctor knows what to do with him.
     Has anyone been in a similar situation? Does anyone have any suggestions? He feels so much worse than before they started treating him. Many thanks. God bless.

Crystal S' May 23 reply to Nan's May 22, 2003 - Hi, I have CHF due to DCM and my EF is also 25%. I had a problem with Altace too. My doctor put me on Diovan and I haven't had any more problems with coughing. Has your husband's doctor mentioned Coreg? Coreg seems to be the wonder pill, from what I hear. I know it also lowers blood pressure too so it wouldn't hurt to ask. Is he seeing a specialist? If not, I would recommend that he does - it can make all the difference, right Jon?
Jon's note: Yep!

Lana, May 29, 2003 - Hi, My husband had his first heart attack at age 40. He had 3 more and at the age of 54 (2 years ago) was diagnosed with CHF after being hospitalized. He sees a heart failure specialist and gets all the meds.
     My question is, why has my husband left me emotionally? We had a wonderful relationship - better than average - for approximately 15 years. Now he acts like we are brother and sister, if that. I understand that there are sexual side effects to the meds he takes, but does that prohibit any kind of intimacy? He even acts hostile towards me - like his heart condition is my fault.
     Please, has anyone else had the same experience? His emotional aloofness is so hurtful that I cannot describe the pain I feel on a daily basis. Is it related to his health or am I just using that as an excuse to keep from admitting to myself that he has just lost all feeling toward me? I would appreciate any information. Thank you.

Susan B's May 30 reply to Lana's May 29, 2003 - Hello Lana, Is there someone that you and your husband can talk to about this? My husband is 47 years old and he acted angry at me when he first was ill (2-1/2 years ago). He finally told me that he was just mad about not being able to fight fires, and not me. He also did not like it that I was learning all about his illness. He wanted to be well and if I did not agree that he was well, then I was hurting him.
     I asked him to take care of himself and asked about his meds and took care of him. This made me part of the illness for a short time. He turned it into a joke so that it would be better. He started coughing every time I asked him to do anything and told me he was sick - too sick to do anything. Then he would smile and do what I had asked him to do. If he was not feeling well, he just said no.
     I cannot say what your husband is feeling; only he can. You need to get him to open up. This illness is hard - up one day and down the next - but you need to communicate with him for your answer. Get help if necesary. My prayers are with you. Good luck, Susan.

Isabell's May 31 reply to Lana's May 29, 2003 - Hi Lana, I understand your pain with your husband. In my case I am the one that has CHF along with other medical problems. I thought I was reading a letter I could have written. My problem with my husband started 8 years ago and and has gotten progressively worse. I even considered moving out, but then I am trying to get focused on enjoying life the best I can and I try not to let his attitude kill my joy of living. Different medications affect our minds and bodies so we are not always what we want to be. I have been married over 42 years and don't want to quit now. I pray a lot.

Julie, May 31, 2003 - Hello Everyone, My father has CHF. He is 59 years old and was told 10 years ago after a double bypass that he needed to lose 100 lbs and quit smoking. He has done neither. He is 6'2" tall and weighs 380 lbs. He has severe heart damage. The apex of his heart is the area where most of the damage has occurred. His ejection fraction 6 years ago was 20%. Today, it is 14%.
     It is a miracle he has lived as long as he has. Every day for years he has defied the odds and lived the life that he wanted to live. He has snowmobiled every year. He has hunted every year. He worked in the field, in the shop, under cars, you name it. With a little rest from time to time and a chance to catch his breath, he has continued to do everything he loves. He has refused to stop until the last several months.
     I know that if his heart is finally at the point of not being able to support his body anymore, there is little that can be done. He tried to go to the field this spring and spent 3 days in the tractor, but could not do the work. He cannot walk more than a few yards anymore without finding a place to sit down. In the last 2 weeks he has started using oxygen and is often in a cold sweat from mild activity. He feels he has come to the end of the line and so do many of us. He goes into the ER and they let him rest until his numbers are good enough to send him home and that is exactly what they do. His doctors have little to say, but my mom and I have questions.
     I know we cannot expect him to live forever, especially when he has chosen what he views as quality over quantity, but about 8 months ago he started a new drug and since then, with every increase in the drug that is supposed to help him live longer, he feels worse. His doctors refuse any suggestion that this drug may be at the root of his decline. Last fall this man walked in the woods deer hunting. Did he pant? Yes. Could he walk and talk at the same time? No. Did he have to sit down and rest? Yes, but he could do it. By winter, he was feeling worse. Snowmobiling this past winter was a struggle and he said that it might be his last year on the sled. He developed diabetes that alarmingly went from mild to insulin-dependent in a matter of 4 weeks. Meds were adjusted. Insulin was adjusted. He lost some weight - about 20 lbs and the drug I am questioning was also adjusted - upward. He started having a terrible time retaining fluids in his legs, feet and hands. He developed actual blisters on his feet from the excess fluid. His chart reads, "Renal insufficiency of unknown etiology." Furosimide was increased and diet restricted.
     Now he is on 2 liters of oxygen when he sleeps. He is on one liter during the day. If his oximeter shows his oxygen saturation below 90%, he increases the flow until he recovers. He cannot shop for groceries without breaking into a cold sweat and feeling sick, with back pain, lightheadedness, and a racing heart. He has a portable blood pressure meter and oxygen meter. Today while walking, his pulse was 130 and his blood pressure was 110/50. It is not uncommon in the last month for his blood pressure to be 80/50 or less. The worst reading to date has bee 65/30. He rests and it eventually improves.
     I am curious about the drug that he is taking. He finally reached the dose that they want (50mg) about 2 weeks before having to start using oxygen. We are seeing decline in him by the day. His doctors say that it would be much worse without this miracle drug called Coreg. They say that without it, he would be dead.
     His EF has not improved. His symptoms get worse with every increase of this drug. He is warned that he cannot decrease it for fear of adverse reactions. I know my dad is dying. I have known that for some time. I know that there is no drug to make him whole. I know he is not a transplant candidate. For 10 years I have watched the decline. In the last several months while this drug has been increased to it's toted lifesaving level, I have not watched a decline, but a crash.
     Is Coreg a panacea for all CHF patients? Is it not possible this drug could be making things worse? Can you be taken off of it safely once you have started? Could this drug be responsible for his sudden decline? Is there any way of knowing if this is natural decline of his condition or effect of the drug?
     It is so hard to find any negative information on the Internet about a medication. I have searched for hours to find info about the downside of Coreg. I want some knowledge and information to go to his doctors with. I want to know how we decrease the drug safely. He and the rest of us think that each time he takes it he is a little closer to the coffin, but no doctor we have seen will say a single negative word about it. If anyone has information about Coreg and problems it might cause, please send links, your stories or whatever you feel might be helpful. Thank you, Julie.

Jon's May 31 reply to Julie's May 31, 2003 - Hi Julie, All contraindications, side effects, and interactions are found on most of the sites in the drug section of our links page as well as on several pages linked to from our Coreg page. Take a look and then fire any specific questions our way. I don't know that Coreg can be safely stopped - I doubt it - but the dose can be safely reduced by 50% or more. 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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