Tuesday, November 18, 2008

Short PH Story

Hey everyone, glad you could stop by and visit. Seems like everyone is telling their story of contracting PH, so I'm gonna take a shot at it and try to write a short version. My little ordeal with PH started back in 2000 when I was admitted to the hospital with Pneumonia. While in the hospital I started throwing blood clots to my lungs and continued getting worse. After a month in intensive care, lung surgery, and a Greenfield filter, I was diagnosed with a disease called Antiphospholipid Anti body Sydrome and Thrombocytopenia. I was treated for this and released from the hospital after 6 weeks on coumadin to control my blood clotting. Over the next few months I continued getting clots in my legs and seemed to be getting worse, becoming extremely short of breath and fatigued, often passing out. I went to several other doctors and all said that there was nothing that could be done that wasn’t already being done. Finally in 2003 I went to a heart specialist who did an echo and said he thought that I had PH and he made an appointment for me with a PH specialist. After being in Doctor Babar's, my PH specialist, office for 15 minutes he was on the phone with PH Specialist at University of California San Diego (UCSD) and they said for the Dr Babar to run some test and send to them. After the tests were done I was told I definitely had PH and that the blood clots had to be removed from my lungs. A few weeks later we were on our way and I had the surgery 3 days after arriving in San Diego by the worlds best surgery team. After the Pulmonary Thrombo Endardirectomy(PTE) surgery I felt like a new person, with the clots removed from my lungs I could breathe much better and walk longer distances, but was still far from being normal. In the end I was still left with PH due to the damage that the clots had already done to my lungs, heart and arteries. I’m still taking PH medications and have tried several new ones as they come out, but I am alive and I will not give up the fight for a cure for PH, maybe not for me but it could help others down the line that get this terrible disease. As I write this in November 2008, I am able to walk better distances, play with my Grandchildren, work outside and just enjoy my family and what God has given me. I have made new friends through the Pulmonary Hypertension Association that are like family, who I can discuss problems with and share feelings. I feel like even though I have a dreadful disease that seems incurable, I am still a blessed person for being able to spend the time that I have on this earth. To others with this disease, I say, don’t ever give up, there is always hope.
Well theres the short version, hope it wasn't too boring, I'm not one to write much about myself. Anyway I guess I need to get outta here and act like I'm doing something before Miss Judi finds me something to do. Yall come when ya can, the doors always open to my friends.

Hugz N Handshakes



Annette said...

Terry, I love your blog! I've been slow in reading the last couple of days, but am now caught up with you. Your children and grandchildren are so very lucky to have you. As a matter of fact, we're all lucky to have you! Take care my phriend.

Colleen said...

Your story is great, TW! I'm sorry you had to go through that surgery and not be totally cured, but you are still here, and that's what counts!! And I am glad to have met you!! :)
Colleen :)

Teddybear said...

Wow, I am SOB from crying. Thank you for sharing your story. Yours is very simular to mine with the clotting disorder.

I am glad you are here and enjoying your grandkids. Blessings to you and your family. Deb

Anonymous said...

Wow..TW..thx for sharing..I am sorry you were not "cured" from the PTE surgery but so happy I met ya..You are a wonderful part of the PHamily:))

Take care


phtony said...


Thanks for sharing your story. It left with me with a fresh attitude; whenever I reach for the coumadin, I'll no longer do it with distain. Take care on Poverty Hill.


ali said...

We are so lucky to have you in our phamily.