PH and My Story

Back in 2003 I was having rapid heart beats and alot of SOB. I went to my PCP which then referred me to a Cardio, the whole works was done on me. I went back for results and she told me that the results of the echo showed that I might have Pulmonary Hypertension. She didn't explain to me what PH was so I said ok. She then referred me to a Pulmo Dr that supposively knew about PH. I went to my first appt and indeed he said the same thing. He was to order more tests. But at that time my PCP changed networks so I was no longer allowed to go see that pulmo. I still didn't know what PH was. I was still getting very SOB so I fought with my PCP's office to get a referral to someone that would take care of me. In the meantime I was RX inhalers for asthma, (which I never had). That stuff in the purple disc. (I forget the name)

I was rx something for my rapid heart beats and also lasix. My SOB continued I knew it was getting worse. I was sent to see another pulmo Dr and he told me that there was nothing wrong with me, that I just needed to go home and loose some weight. My PCP then refered me for Gastric Bypass Surgery. I went through all the classes and tests that they require. I had to be cleared by a Cardio Dr and a Pulmo Dr. The cardio Dr said that my echo showed something about my heart but still cleared me. The Pulmo Dr said I did have what looked like PH but he cleared me also. OK I was cleared and good to go..... The Gastric Bypass Surgery Dr called and said he wanted to see me. I went in and he told me that he could not risked doing the surgery on me. He said that the numbers on the echo were supposed to be at 25 and that mine where way over that. He told me... You really need to go see a Dr that can treat you for PH. I was uspet and was crying.

I went home and went online and looked up Pulmonary Hypertension. Oh my GOD. 3-5 years of LIFE LEFT! NO, this can not be true! Why, why I said? Sobbing like always I continued to look further into PH. Then I see.. Ïf you took Phen-Fen, you could have PH! I said what? What the heck is going on? Yeah, I was one of those that took Phen-fen and that's why I now have PH. Funny isn't it, Phen starts with Ph... I am still Phat and I now have PH!

I found PHA boards and checked out the Dr's and I found the wonderful Dr. Channick. He did my RHC and confirmed PH and started me on Tracleer. I started having problems with my Ins they refused to pay continued visits to see Dr. C. They sent me to another Dr that supposively new all about PH but she was not a PH Specialist. She never did anything for me. I was getting worse. I ended up changing Ins at work as soon as open enrollment came up and I went back to Dr. C.. It had been about a year already, he did another RHC, my numbers were down a little not much so he added Revatio. A another year and I was getting worse. He did another RHC and yeap my numbers were higher then the first RHC. He then put me on IV Remodulin. I am still here and I am feeling a whole lot better. I still am SOB, not as much as before, but Dr C tells me we still have room to increase. So at this point, side effects and all, LOL I am increasing.

I can't emphasize again how important it is that you get to a REAL PH Specialist and get treatment!

Sorryyyyyyyyyy so long and thanks for reading

(((((HUGS)))))