Cardiomyopathy, CHF, PH, TR and HBP: So what does ALL this mean?

[deek]

Okay. So, I saw my cardiologist yesterday and was told the following things: I have cardiomyopathy, chf, pulmonary hypertension, severe tricuspid regurgitation and my blood pressure is back up AGAIN! WTH? My last echo (1 of 3 since MVR in March) is worse, not better and the "heart healing" medications she has put me on have not helped thus far...I was 3 months post-op June 27th. She increased my medications, ordered a holter monitor as well as an echo for August and has referred me to a PH Specialist, as well as back to my Hypertensive Specialist, in Ann Arbor, U of M.

This doesn't sound good to me BUT she's STILL telling me not to worry as the heart can still heal considerably between now and six months post-op. I'm obviously not pleased with this but I guess I'm glad she has referred me to a PH Specialist. What can I expect here? What kinds of tests will they run? I'm only 3 months post-op so is it too soon for a right heart cath? Feeling quite overwhelmed by it all. Thanks to you all. And a special thanks to Lyn and Nancy who have encouraged me to press on. You both have been through so much and I sincerely value your opinions.

Hugs, Dee:

 

[Ross]

If just means your as messed up as a football bat.

At this time, it doesn't sound real good, enlarged heart, congestive heart failure, pulmonary hypertension, severe tricuspid leak.......But your still in the process of healing, so some, if not all, may disappear in time.

 

[halleyg]

Hi Dee,
I just wrote to you on FB, but I was thinking, since I had asked about a second opinion... you should send your files to Cleveland Clinic, I did this when I was facing my second OHS. Also, there is a cardiologist in Atlanta, Dr. Spencer King. I used to go to him, and my surgeon brother used to fly up from Miami to see him twice a year before his OHS, recommended by his cardiogist brother-in-law. My brother said in the medical world he is referred to as "the Godfather of Cardiology." He wrote the big book on the heart that they use in medical schools... my brother was in awe when I told him Dr. King did my cath, b/c he was one of the pioneers (I was just glad he did a good job). Anyhow, he is the nicest dr. and travels the world lecturing... he is truly passionate about helping ailing hearts and didn't stop with me until he figured out what was going on, even trying some new things (I was hard to diagnose). I could get you his contact info. It wouldn't hurt anything. I think it would be a great thing for you to do. Just get in touch with me, you know how... more hugs to you, I know you need all you can get! Thinking of you.

 

[ALCapshaw2]

The BAD NEWS is that Recovery is a SLOW Process and can take Way Longer than we like.

It is NOT uncommon for Heart Surgery patients to report continued improvement for a YEAR and sometimes even a little more, especially if they were 'out of condition' going into surgery.

The GOOD NEWS is that for the most part, we DO recover (in time).

Bottom Line: You will need to develop a Long Term Outlook and find the Patience and Persistence to Keep On Keepin' On. (and many of us know that is not always easy!)

 

[deek]

Hi Dee,
I just wrote to you on FB, but I was thinking, since I had asked about a second opinion... you should send your files to Cleveland Clinic, I did this when I was facing my second OHS. Also, there is a cardiologist in Atlanta, Dr. Spencer King. I used to go to him, and my surgeon brother used to fly up from Miami to see him twice a year before his OHS, recommended by his cardiogist brother-in-law. My brother said in the medical world he is referred to as "the Godfather of Cardiology." He wrote the big book on the heart that they use in medical schools... my brother was in awe when I told him Dr. King did my cath, b/c he was one of the pioneers (I was just glad he did a good job). Anyhow, he is the nicest dr. and travels the world lecturing... he is truly passionate about helping ailing hearts and didn't stop with me until he figured out what was going on, even trying some new things (I was hard to diagnose). I could get you his contact info. It wouldn't hurt anything. I think it would be a great thing for you to do. Just get in touch with me, you know how... more hugs to you, I know you need all you can get! Thinking of you.

Thanks, Halley! Yes, I AM interested in seeing this guy as no one has been able to figure me out. (Every one calls me an enigma, so I guess that means I'm hard to diagnose too!) Anyway, thanks for the referral and if you want you can just send me the info via email address removed for member safety-Ross or fb. Again, many thanks! Dee

BTW, love your profile pic!!!

 

[Nancy]

Some of these things will probably improve or even go away once you get proper treatment.

There are good treatments for HBP, there are treatments for PH, and the TR could even be caused by your PH.

PH can also cause distention of the atria and enlargement of the heart, so getting treatment for the PH may be a key here also.

I think in time (PH treatments take a while to kick in) you will see a diminishing of your high test numbers, and your symptoms.

Hang in there and don't expect it to happen overnight. No doubt you will have a big battery of tests when you get in to see the new doctors, then they will tailor a treatment plan for you.

Never give in and never give up!

 

[Lynlw]

I know it isn't the news you want, but all in all I look at this as a positive given the circumstances. There is at least now a plan to get you to the right docs (PH) that will know the right tests to order AND they will come up with a plan A then B ect until they can help YOU and make you feel as good as possible. It will probably take a little more time, because your heart IS still healing so things can change, but my guess if when they determine the cause of the PH and start treating that, alot of the other things will improve.

On paper, Justin's heart looks AWFUL,(almost every valve has problems, his right ventricle is huge and his pulm pressures while great for him would have some people considerring intervention). a couple years ago when we went to Boston for a 2nd op the doctor had read all his charts looked at his echos ect and was SHOCKED when he walked in so well, she said she was expecting him to be in a wheel chair and asked if he could get up the stairs with out getting out of breath, she was really surprised when he laughed and saisd I'm a catcher in baseball and go skateboarding all over town. SO what I'm saying is don't drive your self nuts with alot of the labels, hopefully WHEN you get a proper DX and the specialists are treating you you WILL feel much better and get on with enjoying living instead of feeling like crap all the time.

 

[halleyg]

Thanks, Halley! Yes, I AM interested in seeing this guy as no one has been able to figure me out. (Every one calls me an enigma, so I guess that means I'm hard to diagnose too!) Anyway, thanks for the referral and if you want you can just send me the info via email ([email protected]) or fb. Again, many thanks! Dee

BTW, love your profile pic!!!

Thanks, Dee Just sent you an email!

 

[zipper2]

The BAD NEWS is that Recovery is a SLOW Process and can take Way Longer than we like.

It is NOT uncommon for Heart Surgery patients to report continued improvement for a YEAR and sometimes even a little more, especially if they were 'out of condition' going into surgery.

The GOOD NEWS is that for the most part, we DO recover (in time).

Bottom Line: You will need to develop a Long Term Outlook and find the Patience and Persistence to Keep On Keepin' On. (and many of us know that is not always easy!)

Dee I am one who definately has some of your symptoms and when i see al'spost,i am close 6 months out of 2nd surgery and not even near where i felt like i'd assumed i would in 6 months,it is slow proccess for me also and like Al says patience and persistence was is a biggie for me and still is and so i understand it's not easy for you either and wish you the daily best sending cyber hugs your way....wishing you only the best with your future appts and all gets better for you with time......God Bless.

zipper2 (DEB)

 

[Natanni]

Okay. So, I saw my cardiologist yesterday and was told the following things: I have cardiomyopathy, chf, pulmonary hypertension, severe tricuspid regurgitation and my blood pressure is back up AGAIN! WTH? My last echo (1 of 3 since MVR in March) is worse, not better and the "heart healing" medications she has put me on have not helped thus far...I was 3 months post-op June 27th. She increased my medications, ordered a holter monitor as well as an echo for August and has referred me to a PH Specialist, as well as back to my Hypertensive Specialist, in Ann Arbor, U of M.

This doesn't sound good to me BUT she's STILL telling me not to worry as the heart can still heal considerably between now and six months post-op. I'm obviously not pleased with this but I guess I'm glad she has referred me to a PH Specialist. What can I expect here? What kinds of tests will they run? I'm only 3 months post-op so is it too soon for a right heart cath? Feeling quite overwhelmed by it all. Thanks to you all. And a special thanks to Lyn and Nancy who have encouraged me to press on. You both have been through so much and I sincerely value your opinions.

Hugs, Dee:

Hi

I just wanted to add that my husband's 3 month post-op echo/visit was abysmal. Also having cardiomyopathy (left ventricle hypertrophy) EF had dropped to 35%, I can't recall the other specs, but they are available in my archieve posts. We were also told to that this can happen as the heart reshapes and molds. At 1 year, his heart had returned to normal size and EF 55%. We were stunned as we had a hard time believing this could still around. Wishing you all the best in your recovery

 

[COLLEEN S]

Dee, I can't add anything to what the others have already said. Ok I lied...make damn sure you 1.go to a doc who knows his shizz 2.get a second opinion if neccessary. 3. You ARE still healing, so give it another couple months and in the mean time...dont worry so much about numbers and such, go by how you are feeling.

 

[queenie]

I feel your pain. after my 2nd OH last July it was a 9 month recovery full of complications. I just had my 1 year echo and am not happy with the results either. I have moderate pulmonary hypertension and moderate tricuspid regurgitation. My new aortic valve looks great but, what's up with the rest of it? I think the cardiologist in Atlanta sounds like a good idea for you. Hang in there, you still have a lot of healing to do.

 

[Debster]

Hi Dee! My moms heart was not good after surgery-major chf issues, low EF...she got a bivent pacemaker and a good cocktail of meds. Her heart is close to normal now-we are amazed. Two drugs that have helped her are Coreg and digoxin. Yes there is hope!! Best wishes to you, and keep us posted! Deb