How was your PH diagnosed?

How was your PH diagnosed?

Which of your doctors helped the most?

A myPHteam Member said:

So, I had been symptomatic for many, many years, but my PH wasn't discovered til July 2007, even then it was only caught by an xray and an echocardiogram at Kaiser Permanente, Richmond. Unfortunately, that was as far as it went for 9 plus months. I took it upon myself to learn more and found the best website ever, www.phassociation.org, where you can find a PH Specialist in their directory. I emailed every single PH doctor in the Northern California region. Guess what, every single one of them answered back! I know that UC Davis is a medical school, so I went there in April of 2008 and met Dr. Roblee Allen. Lets just say my first impression of him scared me to death and I quickly contacted UCSF and went in via their ER. May 5, 2008 was the day that I truly got diagnosed. I was given a full spectrum of tests which consisted of the most important test of all, the right heart catheterization. I was given a picc line right away and started on Flolan. Lets just say, initially UCSF saved my life and I am so grateful of the whole team. Anyway, over the years, my care was not up to par and I went back to UC Davis, Dr. Roblee Allen, with encouragement and support from a dear friend of mine. This was the best advice I have ever taken from a friend, because Dr. Allen is amazing! Long story short, I am me on Sub Q Remodulin, though it is very painful, it helps so much. Plus, Dr. Allen treats me more like a peer than a guinea pig.
No matter what, I must be thankful to everyone who has helped me through this battle so far. Sometimes you may need to go through a few doctors just to find the right one. Dr. Allen, by far is my favorite, even if he comes off at first a bit strong and scary at first.

posted almost 2 years ago
A myPHteam Member said:

Thank you for your responses. I have walked in all of your shoes. I don't feel alone anymore.

posted almost 2 years ago
A myPHteam Member said:

Cardiologist diagnosed me after all these test were done- stress test, ekg,echo cardiogram, vq lung scan, heart cath. My d dimer test came back highly elevated so I had the vq lung scan and a sono on my legs but no clots were found. I also see a pulmonologist for obstructive sleep apnea.

posted about 2 years ago
A myPHteam Member said:

It all started with odd chest pains and an uneven heartbeat about 5 years ago.The doctor I was seeing ran a few heart tests and found nothing so she told me it was all in my head. I changed doctors when I started getting sicker and sicker and she wouldn't listen to me that something was really wrong. By the time I got in to see the new PCP doctor I had chosen I was soo sick. The chest pain was almost constant, I couldn't breath... I was afraid I had gotten pneumonia again.The new doctor actually listened to me and took me seriously. I had to wear a Zio patch for 2 weeks and that picked up the irregular heartbeat (PVC's), He ran a few tests and referred me to a pulmonologist for my breathing issues. The pulmonologist ran all kinds of tests. He told me from the start that he thought I might have PH but that he had to eliminate the obvious first before going to the zebra in the room. He found the COPD but told me that it was so mild that it shouldn't be making me as sick as I was. He found the hypoxia and put me on oxygen 24/7 and then He referred me to a cardiologist friend who runs the Heart failure clinics at one of the area hospitals. They scheduled me for a left and right heart cath which I had in Dec. 2016. When I came out I was told that I had PH (Mild 32mmhg) but that I had been so sick for so long that I was already at Cor Pulmonale stage. It took about 1 year between starting with the pulmonologist and getting treatment and having the heart cath...

posted about 2 years ago
A myPHteam Member said:

To Lynda , Well my doctor put me on 6 meds , prednisone 20mg , xanax 1 mg (for hyper tension). albeuterol , spirivia , aird duo , and a anti-biotic . this my sound like alot but it really helps with clearing the air ways. and you must exercise every other day , and walk everyday. eat a diet low in salt ,sugar!. It will be brutal at first but as you gain stamina , and strenghten your muscles again , the need for oxygen to the muscles goes down. Look into getting oxygen to use , alot can be said at where you need to set it min. (88 to 98)max. you can turn up the oxygen as you exercise , to where it is a steady reading , as if you were relaxing , please do not over do it ! slow and steady is the key to this , and it will take time. low impact exercise is all you can do. good luck, and do not give up , or it is going to spell trouble down the road! . I know you can do it! John P. Feirick

posted almost 2 years ago
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