Pulmonary Hypertension--Need Specialist

[queenie]

I would appreciate your input on my current situation. I had my first AVR in 2002 for BAV. Five years later, I had to have my mechanical valve replaced because of pannus(scar tissue)ingrowth. I am now left with Pulmonary Hypertension. My number is 50 at the moderate level however, my cardio told me yesterday that 55 is severe. I need to find a specialist who can manage my case and hopefully keep me from progressing as long as possible. If any of you guys know of good results with a good Doc. I would surely appreciate it. I live in SC but am willing to go anywhere in the US. Thanks for your help.

 

[Nancy]

Here is a list of support groups from the Pulmonary Hypertension Assoc. (PHA) web site. Scroll down to SC

http://www.phassociation.org/Page.aspx?pid=1611&tab=12

Here is the main page of the PHA web site

http://www.phassociation.org/Page.aspx?pid=197

Here is find a doctor from the PHA for SC

http://www.phassociation.org/Page.aspx?pid=437

Here is the Community page for PHA which has a discussion group like here and other email and support groups

http://www.phassociation.org/Page.aspx?pid=1368

My husband had severe PH. If you have any questions feel free to ask.

 

[Nancy]

Here is the patient page for the PHA. Take a look at the resources in the left column.

http://www.phassociation.org/Page.aspx?pid=258

Here is an overview with a lot of details in layman's terms from a different site.

http://www.chfpatients.com/ph.htm

 

[queenie]

Thank you Nancy, I know Joe had many problems and Ph was one of them. Thanks for the links, I am fine walking on a flat surface but, any incline at all and I feel it. I get worn out just walking into wal-mart. I just want to do what I can to hold the progression off as long as possible. On top of it all, I don't have insurance. I had to cancel when my premium went to $1500 a month. I have applied for disability and am really hoping that goes through. My cardio says I need to find the best in the country. Who did Joe see for his PH?

 

[Nancy]

Joe had a fantastic specialist who is a cardiologist and also a research doctor. He is no longer at that hospital, went into research and I have lost track of him, but I am forever grateful because he saved Joe's life. I suggest that you make contact with someone in your state through the PHA web site, regarding a good specialist and also join the discussion group and ask there.

Some of the medications are expensive in a frightful way. Maybe $100,000.00 per year or much more. I believe there are circumstances when the drug companies will fund medications for people. But ask on the PHA web site.

njean on this site is currently being treated for PH and doing well. She is on Revatio, I believe. But there may be generic versions of that. It is basically Viagra (sildenafil).

Joe was on Tracleer which is one the terribly expensive ones. He had good insurance, thank God. The Tracleer eventually caused him liver problems and he had to go off it, which was tragic.

 

[njean]

I can truly comprehend your situation Queenie since our cases are so similar in that pannus growth has interfered with the functioning of our valves.

I too am fighting Pulmonary Hypertension. And like Nancy mentioned, the cost of some of the medications to help fight the illness are frightening! Luckily, I have good insurance but if I had been uninsured, I would not have been able to affort the $55,000 or more per year for the medication (Revatio) I am taking.

First, you must find a specialist or contact the cardio that has been treating you to see if he knows of a good PH specialist. My cardio was the one that put me in touch with the dr that is treating me for the PH. In fact, my cardio was the one that put me on the Revatio on recommendation from the dr I see for the PH. At my worst, my PH levels were in the 88mm range, then dropped into the 60's. At the present time, with the medication I am on, my last Echo showed them at 46 which is like half of where they were before.

Contact your cardiologist & try to get some form of direction from him. Ask him about the Revatio or Tracleer that Nancy said her Joe was on, to see if he thinks it would help you. Another thing, sometimes the drs have samples of these medications on hand & they can give them to you. The last time I went to my cardio, he gave me 3 bottles of 90 pills per bottle of Revatio for free!!!! I thought that was so thoughtful of him!

Good luck to you Queenie & please look into getting help for the PH. Left untreated, it can have some devastating affects on your heart & lungs, something you can't afford with you're already compromised condition.

 

[queenie]

Thank you njean, you and I are kindred spirits with our situations. I am so glad you are doing better. My cardio doesn't have any input on a ph specialist. He doesn't like any of the docs here. He knows I am a experienced patient and will find the best on my own. I am going to connect with a support group in my town and with the national support group and hope to get recommendations from them. I am still weary from my ordeal of having to find a heart surgeon this second time around and don't relish this stress again but, I know I shouldn't wait for the information and the input so I can keep it from getting worse any faster than necessary. Right now my number is 50. nowhere as bad as yours but, I don't want it to get there either. Thanks again.