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Patient story

Clarence McGee

I am a male, born in 1935 and married in 1959. I have three grown children and three grandchildren. Besides my family I am proud of the fact that I was instrumental in the "Telstar" project - not the song, the launch of the missile. Later and bigger was the Saturn Apollo project and the sending of men to the moon and bringing them home again.

Until I was 65, I was the perfect picture of health and then, Katie bar the door. In 2000 I suffered a clotted abdominal aneurysm. Recovery from surgery left me with idiopathic globular membranous nephritis. This was my first, but not my last, step into the world of "I don't know where it came from, but it's here." I fought that for six years until my kidneys just died and I became a dialysis patient, and the after effects of 45 years of smoking left me with COPD and emphysema. Neither of these is curable and so they may be the end of all ends.

I was going to dialysis three times per week and also to pulmonary therapy three times a week, and the exercise was good for the dialysis and the COPD also. I was on O2 @ 2-3 lpm pulsed, but I had worked my way up on the treadmill to an eight degree incline, walking at 2.5 mph. Really not bad for a 70-year-old man.

On January 7, 2008, as I started exercising, I discovered that what I did in December 2007 was impossible that day, even with O2 of 5 lpm continuous. I sought help from the local pulmonary guy, and we had a very contentious relationship. His opinion was, "Here's a 70-year-old with COPD and emphysema, and he's worried because he has to have his O2 increased. Get over it!" I felt that something new was messing with me, and I needed to get it under control ASAP or it was going to be the end of me.

I was on the transplant list at UNC, so I asked the doctors there to get me a pulmonary specialist who had some knowledge of pulmonary hypertension. That was done and my pressure was 43 cmHg as measured by a right heart catheter. I'm one that an echo cardiogram does not work for. The new doctor confirmed that I had idiopathic pulmonary arterial hypertension. There was that word "idiopathic" again. What did I do to merit that again? Well nothing; it's free. It's incurable at this time; it's a woman's disease. It's a disease of the young, 20-40. But it's like love: blind!

After some time, I adjusted and was still able to do some work and mow yards and the like. But all of a sudden, 5lpm would no longer hack it, even with a body at rest. It felt like I was drowning all the time, so off I went to the ER at Duke for the team of Drs. Fortin and Tapson and many others on their staffs.

Now I am at 8-10 lpm at rest and 15+ at activity, and walking is just about out of the question. I am on Tracleer 125mg twice per day, Revatio 40mg three times per day, Tyvaso four times a day at 12 breaths, and O2 24/7 at 10 lpm minimum.

There is nothing I can do comfortably but sit and maybe do computer work or read when the O2 is flowing well. I answer posts on dialysis, sleep apnea, and pulmonary hypertension on several different support forums. I certainly wish I didn't have it, but I'm glad that I lost my kidneys first just to give some reference to the loss of my lungs for fun and pleasure.

The nephrologist announced to me in an open clinic setting that I had six months to live in April 2009. Well I did live those six months and some more also. They then dodged me for about a year until I caught one, and she told me that she had never seen a PAH person live longer than six months, so paint me with the same paint brush and get it over with. The nephrologist sees me once per week in a Medicare paid appointment, and they are so fearful of PAH. I am not allowed to discuss any symptom but kidneys with them.

I have been blessed to have organizations that will help pay for Tracleer and Tyvaso. If not for them, then I guess I'd be dead. I had to go without Tyvaso for three days due to a logistics problem. I'm not sure I can live constantly like that as breathing was an effort that I just could not live up to.

I am not able to give as much encouragement for PAH as for dialysis and that hurts me. It's just fatal and incurable, and as far as I can figure out, it is not delay-able. I do have a lot of connections in Government due to work with the kidney organizations, so I work with them on PAH as a private citizen. IPAH does not allow me to travel. Just the logistics of the O2 that I need to have with me to get to Washington, D.C., from here are unbelievable. So I can't go. Also one of the worst things about PAH is no vacation; I can't manage the logistics for both dialysis and PAH.

Now after two years of treatment, my pressure is down to 37 cmHg, but my symptoms are twice as bad as before. Just goes to prove that cm of Hg is not linear. I would have supposed it was, but I guess in my case the PAH only has about half a lung to work with and so a little cm of Hg goes a long way.

I am, of course, willing for any and all clinical trials, but none are around. So my days and weeks are spent going to dialysis, going to pulmonary therapy, eating and sleeping. In between times, I'm grading homework papers (college level economics), responding to forum postings for dialysis, sleep apnea, pulmonary hypertension and other miscellaneous postings. My wife Barb and I have been reduced to strangers by this and often go days without talking about it, even though it is with us every moment of the day.

There is so much I used to do, and now all that is off my plate and the other is on it. As I say so often to dialysis patients: not a bad world, not a good world, a different one with a new normal. Maybe IPAH is not so good.

Never having thought about my life story with IPAH, I had no idea what to say. There seems to be no real hope, just blind hope. Likewise, there seems to be nothing to keep it from getting worse, so it's like getting born: first there's birth, last there is death. They are intimately connected; you can't have just one - it's both or nothing.

 

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