New member here, but not newbie

[LoraW30]

Hello everyone,

I was browsing one day and found this fantastic forum. It amazed me to know there was such a place, where I could share experiences with other people.
Here's a little about myself. I'm a 30 yo newlywed and have dealt with heart problems since an infant. I have had 4 open heart surgeries, 3 of which were aortic valve replacements, and one pacemaker implantation. Now I am facing a choice I would rather not have to make. Because of surgical scarring, and wear on my heart I am now suffering from a type of cardiomyopathy which is causing blood to flow back into my lungs. I am not a candidate for a heart transplant because of high lung pressure. My only option is heart-lung transplant. I have been advised against this procedure as it often makes life harder on the patient.

I haven't been able to share my experiences with many people and this forum sounds wonderful to me. I looking forward to posting and reading.

Lora

 

[Nancy]

Hi Lora-

Welcome to this fantastic site. You have lots of builtin friends here who understand.

You surely have a long and complicated history. There are quite a few people here who do also, so you will feel right at home.

My husband has a long and complicated history as well, and he shares some of your conditions. He had rheumatic fever as a teen, and it damagd his aortic and mitral valves, so he has 2 mechanical replacements for those, he also had a repair on the mitral for a small leak. He has a pacemaker to correct bradycardia. He also has had 2 lung surgeries, one for a benign tumor, and on the other lung for scar tissues that had partially collapsed his lung. He has cardiomyopathy, chronic afib, hemolytic anemia, congestive heart failure (which can back up into his lungs) and severe pulmonary hypertension (high pressure in his lungs and pulmonary system).

Last December, several of his conditions decided to decompensate at once making him critically ill. I was able to find a super specialist in congestive heart failure and pulmonary hypertension. This doctor is part of the transplant team at the teaching hospital near us. Joe was admitted there right into the transplant unit, not that he would have qualified for that, but because he was so ill. He spent a month at that wonderful hospital. He had the most thorough workup I have ever seen, enormous amounts of testing, labwork and trying various treatments. All of his medications were reworked and several new ones were added. Procrit for his severe anemia, Imdur and Tracleer which is a relatively new medication to treat pulmonary hypertension.

This treatment plan was nothing short of a miracle and turned it around for Joe. He is also considered very high risk for surgery, and I'm quite sure that if he ever had to go through another surgery, it would be dicey at best.

But the good news is that he was helped medically, rather than with surgery.

If you don't already have a cardiologist who specializes specifically in your complicated conditions, please do yourself a favor and seek someone who does advanced cardiology. If you have ever been told that you have pulmonary hypertension (and from what you have said, high pressure in your lungs, sounds like it), it is of the utmost importance to find a specialist in that condition. These specialists are among the very few that know how to treat this rare conition. Many doctors never see a case of it in their lifetime. Pulmonary Hypertension specialists see many and have access to drugs which other doctors cannot get.

I wish you all the best. This is a difficult situation, but there is hope and possible help available.

Here is another website for pulmonary hypertension. You can look up specialists there.

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

http://www.phassociation.org/

 

[LoraW30]

thank you for that advice. I am currently a member of the PHA message board. It is also a great way to talk about one's fears and hopes.

I have a great cardiologist and we're still working on referrals to other hospitals.

A supportive husband and family, and great life-long friends are helping me through this as well.

God Bless!!!!!!!

 

[Nancy]

I thought your name looked familiar. This a a very supprotive site as well. There is a ton of information here.

Nice to see you.

 

[LoraW30]

I thought the same of your name!!! I haven't posted there in a while sorry to say. I often have to wrangle computer time from my husband and stepdaughter who is visiting us.

It's nice to see a familiar name.

 

[Nancy]

Sometimes that board is a little slow moving, but very informative. Here, it's always jumping, or so it seems. When Joe was hospitlalized, I wasn't here much, when I came back, WOW, what a yakky group.