Possibility of Valve Surgery with Chf and PH

[Harrybaby666]

Ok Guys,
I have another question, that I don't know if anyone can give me any help on, but here goes nothing anyway....

I was wondering if anywone would know what the probability would be to have my valves fixed considering the fact that I have Cardiomyopathy and Chf, and PH. I was told by a member of PHAssociation, that PH can damage the valves more by pulling them from their positions in the heart. I was wondering if it's even going to be worth it considering my health problems. I mean, I know that the valves are getting worse, and I would like to have them repaired, but would I actually be helping myself or hindering my health even more? I was thinking about this for the past week, and thought maybe someone would have some insight on this...As always, I am eternally grateful and appreciative of any help.. Thanks. Harrybaby666

 

[Nan]

Harry,I don't know enough about it to give you any kind of answer, but did the PH folks mean a new valve or a current malfunctioning valve when they said the PH would perhaps pull it out of position....

I think you need to be asking surgeons, perhaps getting second opinions if possible. I know you are on medicaid which may make it more difficult. But if you could get together the fee for the Cleveland Clinic, they do a second opinion by you getting all of your records to them. They then review them and get back to you (not your doc).

Hope you are feeling better.

 

[Abbanabba]

Harry, I know several people who have had their PH either reduced or alleviated after their valve replacements - although I know your condition is probably quite different, so I don't want to lead you astray.

I guess my point is that you're probably best being assessed by your PH specialist and cardiologist (even better if they talk to eachother). I've been on the phassociation site myself and there are so many different factors in everyone's cases that I wouldn't neccessarily take what one person says as gospel. It may also depend on whether the PH is primary, or secondary (..due to other heart/lung issues, for instance..).

From pretty much everything I've read, if your valve(s) need replacing and you don't get it done then you could end up needing an entire heart transplant anyway.

Hope that gives you another view to consider, but definitely discuss your options with your specialists - and if you don't feel your concerns are being adequately addressed by them then get yourself a 2nd (3rd, 4th) opinion.

All the best
Anna : )

 

[Harpoon]

Ummm... it can be argued that CHF, PH, and Cardiomyopathy can all be caused by having a bad valve or two.

That's the case in my situation.

I had all of that, technically I guess I still have the cardiomyopathy (an enlarged heart) but it's better than it used to be and will ALWAYS be slightly larger than normal because of the way my heart works in relation to the transposition I was born with.


Talk to a doctor. The only alternative if surgeons didn't want to try and fix a heart valve because of CHF, PH, and cardiomyopathy is transplantation and you know, there are a LOT more people in here with valve replacements than transplants.


A transplant is ALWAYS the option of last resort, when nothing else will work to fix the problem. Generally, fixing bad valves like that makes your heart work better and will alleviate those other conditions unless there's some other cause involved (an infection or cancer or something that's not valve related.)

I was in very severe heart failure (CHF) when I had my surgery. Now it's almost non-exsistant.

 

[Harrybaby666]

Hi Anna

Hi Anna

You know, it's amazing but I did talk to someone and they somewhat put it into logical perspective. They told me that since I have had respiratory problems since birth that I should (as well as my parents, when I was a minor) have been told that eventually, the lung problems would damage the lungs and the heart, which it is now doing, I was also told that I might need a heart AND lung transplant if the PH gets so bad that the meds won't work. I dread that day...But you know, I was also wondering if by fixing my valves would help lessen the PH. I guess I have my first question to ask the PH Specialist. As I have said to others on here, I have had an awful time getting my doctor's to communicate with my primary, and I am hoping I can fix that too. Thanks for your ongoing support, and I hope all is well with you and you are getting the care that you require. All the best, Harrybaby666

 

[Harrybaby666]

Hi Harpoon...

Hi Harpoon...

Thank you for your insight on this, and I will have to check and see with my cardio and see what is gonna be done. I can't help but feel like the doctor's either don't care, or don't know what's really going on. I can say that I have been going in and out of CHF very regurlarly, but my cardio doesn't seem to be worried, and even though my aortic and pulmonary and tricuspid valves have all evolved from trace to mild, again, he doesn't seem worried. He was also the one that told me I have PH, So it will be interesting to see what happens when I have my next echo on November 15th. I hope that they will come to the conclusion that something needs to be done and do it and get it over with so I can feel better. Thanks for your help Harpoon, and I hope your feeling good and having alot of fun taking pictures, as I enjoy that hobby as well. Hopefully, I will have a digital camera soon. Take Care, Harrybaby666

 

[Harpoon]

Here's one just for you Harry.

Not often one gets to go take photos inside a burning house.

 

[Abbanabba]

Harry, I hope your PH specialist is able to give you some clearer answers specific to YOUR issues. Like Harpoon, my problems are from a congenital heart defect (..I've also got some severe cardiomyopathy, mild tricuspid regurg, moderate-severe pulmonary regurg, and I'm still trying to find out what's going on with my pulmonary pressures ..) and I'm pretty much assured a PVR will sort out most of my problems.

If your problems stem from your lungs and respiratory problems, then I don't know how that will effect a valve replacement. I still don't understand how that can be worse than leaving it until you need the whole heart/lung transplant - but then I'm not a specialist!

I'm just glad that you've FINALLY found out why you've been having all these problems and you can get on track to managing them. It sounds like you might still need to find a team of medics who treat you with a bit of respect and dignity, but I'm sure you'll get there.

Let us know how you go with your next appointment.

Cheers
Anna : )

 

[Harrybaby666]

Way to Go Harpoon!!!

Way to Go Harpoon!!!

Although, with my lung problems, I would probably be dead in no time....but yes, I think it would be exciting to be able to do that...

 

[Harrybaby666]

Hi Anna,

Hi Anna,

All I have to do now is get the doctor and the nurse to ALLOW me to go see the ph specialist, as the nurse told me last friday that they wouldn't let me go see the PH specialist until I saw the PCP, who DIDN'T know that I had been diagnosed with PH. Honestly, I absolutely hate the mis communication and moreover, I hate the way the doctors downplay the illnesses into something that is extremely minor.. I hope all is going well for you anna, and that your getting the proper care. All the best from me to you..Harrybaby666

 

[Abbanabba]

Have you tried contacting a PH specialist directly? I was given the same spiel about not being able to see a PH specialist without a GP referal, and of course the GP wasn't really willing to make the referal because my cardio didn't think PH was an issue (..isn't it wonderful how they can make such accurate diagnosis without even running tests! ..). I ended up finding a PH specialist (and there are only about 5 in Australia - so that was a bit of a task!) and calling their office. I explained the hassles I'd been having with my GP and cardio, and the symptoms I'd been having and they were surprised I hadn't been referred.

Unfortunately it was a 3 month wait to get in and I was moving before then so I wasn't able to make the appointment, but I'm glad I took the initiative to call them because it showed me I didn't neccessarily need a GP/cardio referal as I had been led to believe.

It might be worth a shot... after all, they can only say "no", in which case you're no worse off than you are now.

Wishing you the best,
Anna : )