heart muscle damage

[dpayne_au]

Hi all,

I have been lurking in the background off and on for a few months now. I have mitral stenosis and atrial fibrillation and they were thinking of doing a valve replacement along with the maze procedure. So I thought I would just see what happened to other people re this. However, the results of the recent cardiac catherisation show another problem. It is the likely cause of my main symptoms. It seems that my heart muscle itself may have been damaged from the rheumatic fever. The ventricles have "impaired diastolic function. They did a biopsy, but the results are not back yet. For this there is also 'no cure'.

Has anyone else out there sustained heart muscle damage, fibrosis, from rheumatic fever? What did your doctors say?

Warm regards,
Diann

 

[Harrybaby666]

Hi Diann,

Hi Diann,

I also have "impaired" systolic and diastolic function...Diastolic (in your case) means that your ventricals are not relaxing enough which in turn doesn't allow your heart to pump the blood out to your body the way that it should. Mine is caused by a number of things: I have Hypertrophic Cardiomyopathy-which means that my heart muscle is growing extra fibers in the muscle that shouldn't be growing there. This in turn causes the inability for the heart to contract or relax (the normal function of the heart) to move the blood to the other parts of the body...I don't mean to scare you, and I am not a doctor, just another patient like yourself--BUT...the term for this is Heart Failure. My heart failure is also caused by Sleep Apnea and Pulmonary Hypertension (this Pulmonary Hypetension eventually damages the blood vesscles in the lungs/heart and eventually causes the fibrosis in the lungs and heart. This is what has been explained to me by my doctors. My valves are leaky as well, and I do anticipate having to have them replaced at some point. I hope this helps you, and moreover, I hope I haven't panicked you, but I wanted to inform you so that you are better armed when you see the doctor. I pray for nothing but the best news for you, and if I can help in any other way, please let me know (PM me etc..) Take Care, Harrybaby666

 

[dpayne_au]

Thanks Harry, for your reply. I forgot to mention that they also found mild pulmonary hypertension. Sorry to hear that yours has progressed so much. I got the results of the biopsy yesterday afternoon, definitely heart muscle damage, though they say 'mild' again. All the milds add up to something very challenging to live with.

Diann

 

[Harrybaby666]

G'Day Diann,

G'Day Diann,

I also forgot to mention something.....don't let your doctors discount anything that they tell you....stay as informed as possible...even if it means they get irritated, because it's your body...it's your life...I can tell you though from experience how easy it is to slip into heart failure, because I am going in and out of it all the time...well today it really caught up to me...I have been having a hard time breathing, and since I took my lasix, I have been losing my retained fluid like mad...I bet I have lost 15 pounds worth...As for the pulmonary hypertension, mine is at the moderate stage, and it's a royal pain in the neck....

Yes, all the milds do add up to something...in two areas...1. you have to deal with all these "mild" problems and 2. Mild can quickly progress to moderate to severe. This is why I say, don't let the doctor's minimize your illnesses..

I am truly sorry that you have found out about the heart muscle damage...it sounds like you and I are really in the same boat. Take Care, Harrybaby

 

[Nancy]

My husband had rheumatic fever as a teenager. He has had three heart valve surgeries, two mechanicals implanted and a repair on one of them. He has also had two lung surgeries. He has congestive heart failure and also pulmonary hypertension, plus his tricuspid valve leaks severely, but is not a candidate for replacement.

He finally got treatment for his PH a little over a year and a half ago, after almost dying of it. He was hospitalized for a month, in the critical cardiac unit.

He takes Lasix twice a day for his CHF, and has to stay to a diet with almost NO SODIUM. It's very strict. He also takes Tracleer for his PH, in addition to about 12-13 other medications. His regimen is difficult, but he is doing better than most would expect. In people with PH, CHF and PH seem to be intertwined.

I urge you to seek out a pulmonary hypertension specialist. This is a rare disease and it is progressive and can be fatal, if not treated. Most doctors don't see a case of it in their practice, and that includes pulmonologists and cardiologists. Specialists see PH patients all the time, have access to the latest information, and the latest drugs for the treatment of it. Some of the drugs can only be prescribed by a PH specialist. Even though you have a mild case, it is important to touch base with a specialist.

The folks here on this board have a higher than normal rate of PH. There are many here with it.

I am including a link for the Pulmonary Hypertension Association. It is for their discussion group, but do take a look at the whole site, including all the parts of the Home page. Plus post your PH questions there. There are many folks who have a wealth of knowledge on PH and they know their stuff cold.

It is a fact that most doctors will ignore PH, and you can read chapter and verse on that subject on the PHA website. This is because they do not realize that there are now several treatments for it that will halt the progression of the disease and return the quality of life.

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Harrybaby666]

Hi Nancy

Hi Nancy

I was just wondering, I seem to be slipping in and out of Congestive Heart Failure more and more, as I have been getting rid of fluid like crazy...speaking from experience with your hubby, would you think that this might be because of the Pulmonary Hypertension? My pressure when checked in the hospital in August was 43, and I was just hoping you might be able to give me some insight from your experiences with your hubby. I have been haveing a really hard time breathing, and I am getting ready to move which is making things hard as I am getting out of breath just by standing up. I can pack a few things but have to sit back down shortly...I also wanted to let you know, I looked for a PH specialist in NH, and there are none, and Medicaid might not let me see even a specialist outside the state....I am trying to call them to ask, but until then, I am stuck...Any advice you can give is and always has been gratefully accepted and appreciated...Now, enough of my questions...How are you and yours feeling? I haven't heard from ya in a while, and I know you have been doing the cancer thing-I hope and pray that you are healed from that, and how has your hubby been feeling? I hope all is just peachy all around I guess. Once again, Thanks. Harrybaby

P.S. I thought the attatched pic was hilarious, and couldn't resist adding it after I souped it up a bit....I hope you get a laugh...H.

 

[Nancy]

Hi Harry-

When you go to the PHA website, go to the main page, one of the links at the top, maybe "Resources", has a link for ACCESS. Call them and discuss your insurance problem with them. I believe the man's name is Rick Perry, if memory serves me. He has helped many people gain access to a PH specialist, when they thought it was impossible.

Harry, for Joe, his CHF and PH are very integrated. It might also be the case for you. Because he takes Lasix twice a day, he can also go into kidney failure. So that is why he has to keep his diet extremely low in sodium, and that means that I make everything from scratch. It's labor intensive, but it is the only thing that works for him, plus it allows him to take the lowest dose of Lasix that works and thus spares his kidneys, even though they always borderline on the low end of the scale.

He also weighs himself each day and we keep a log along with his temperature. A three pound gain in a day is cause to call his cardiologist and get instructions for a temporary higher dose of Lasix or Zaroxolyn. His cardiologist is VERY responsive and does not hesitate to help him out when we call, since we don't call all the time, and they know when we call, things have to be done. He can also call his PH specialist if need be for the same instructions. So even they know the CHF and PH are linked.

One thing we found quite by accident, was that Joe was taking Metamucil during the day close to the time he takes some of his meds, and he was having a terrible time regulating his CHF. When he changed the time he took the Metamucil to the evening when it was FAR removed from any medications, he his CHF has been stable for over 2 months now, and he is feeling better.

So my guess is that this was binding with his meds and he wasn't getting the full benefit of them. I believe this would also be the case for Tums or other gastric type of stuff. So, if you are taking any things like that that coat your stomach, etc., perhaps try changing the time that you take them as far away from any prescribed meds as possible.

Keep track of your weight each day in the morning at the same time, w/o clothing. This will give you a good idea of how your fluid retention is going. Discuss with your cardiologist when they would like you to call about help with temporary extra diuresis. Some docs say two pounds in a day, some say three, some say a 5 pound gain in a week. And keep your diet as low in sodium as you can. It's difficult at first, but you can get used to it. It might also be a good idea for you to discuss with your doctor the list of all of your medications to see if there are any things which would interact with each other. Joe had the hospital pharmacist go over everything and he gave Joe great information on how things interact, and made recommendations for spacing various medications. It was a BIG help.

We are doing OK here. I have one more chemo treatment left, so that will be a BIG relief to get that over with. Joe is doing OK. Thanks for asking.

At any rate, do call Rick Perry and see if he can be of any help to you in getting a PH specialist.

Good luck, Harry.

 

[Harrybaby666]

Thanks Nancy

Thanks Nancy

Thanks for the input. It sounds like I should move to New York where the doctors really take things to heart...no pun intended.. I am really glad your treatment is almost over, as I know you don't need this while dealing with everything else. Thanks again...Harrybaby

 

[dpayne_au]

Thank you Nancy and Harry for your information. I think the pulmonary hypertenion the test results mention is a result of the other problems with my heart, and not a primary disease. Not that the symptoms would be much different. I do try hard to keep informed as to what is going on. That is a challenge in itself. Thank you again.

Regards,
Diann