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Tuesday, August 21, 2012

Business Up Front, Party in the Back

Me.  Thirty-eight years ago.

Here's some interesting numbers, since we're doing business first.

I traveled approximately 5446 miles to get to the Washington DC/area, to visit with some of my dearest friends, and to go up to New York City for a day trip with them, and then down to Orlando for a conference and then home.

I missed out on 2448 more that I was aiming for, to reunite with people I hoped to see for a 2nd high school reunion for the high school I was supposed to go to in Washington (yes the other side of the country) had I not moved to Arizona in the late 80's. Because, five - I was admitted to the hospital for the 5th time in my life in July. Same stuff, different day. Enough pain and trouble breathing to scare me into checking myself in. What actually happened was the previous week I was at my rheumatologist, and the PA had that serious look on her face and said, "Something's not right. I can't hear lung sounds in your right lung." And I hadn't felt well since my first high school reunion at the end of June and trip East. I'll get back to that in a minute. I still have more business to cover. WHS Patriots class of 92ers who might be reading this, you know it HAD to be a hospital stay that kept me away. I fought that until the bitter end. Diagnosis this time: pleurisy. Yes it feels like pain that could kill you, in fact, on my pain scale, its one of few things that hit 10. But the pleurisy, albeit extremely painful and exhausting, will not kill me. And it is one of my main reasons for delay between posts...it was my shortest stay so far, only three days!

(And, it gets better. It'll behoove you to keep reading.)

Twenty-five is the pulmonary artery (PA) pressure measurement at which you are officially diagnosed with pulmonary hypertension. The first time they measured this on me (done by a right heart catheterization in January 2006), my number was in the 50's. During my extended visit to the ICU that brought me to 2012, I don't even really want to talk about how high my numbers were...Three is the number of heart catheterizations I've had since, bringing the total to four. Thirty two was the age that the doctors who discovered my disease thought I might make it to.

Thirty eight is what I will be turning today.

Thirty four is what my PA pressure was on July 19, 2012, almost a full six years after that initial, "You MIGHT make it to your next birthday" (the one where I wasn't supposed to turn 32.) The lowest my pressure has been since diagnosis. And I still haven't tried all the treatment options, which is great because I still have room to get sicker in case I need those options. Ooh, I forgot, five is also important because that is also the average life expectancy in years for people to live with my diagnosis before demise. For non math people like me reading, that means me turning 38 is 20 months longer than the doctors would have dreamed.

At conference I learned that 9 is another tri-purpose number for me: first because a pill form of Remodulin, the drug that I have on pump that causes my biggest side effects due to the pain of the catheter site, is on the FDA's desk, and they're estimating that 9/2012 is when they will make their decision. Nine is also the number of clinical trial studies that are in the human trial phase for new treatments for PH. How's that for moving closer to a cure? For a rare disease that effects 12 in a million, going from zero treatments in 1995 to 9 current FDA approved treamtents with 9 more so, so close to being approved...I will be going swimming next summer. One way or another.


Enough good news? One more number (for now.) Three. Three inches of new hair growth on the top of my head. You can't tell unless I show you that I've got a mullet. Its kind of funny, and kind of sad. I lost so much hair in December/January that I barely had wisps, and I contemplated buying a head wraps, and wore lots of hats and headbands if I was going to be seen in public. Except for when I went to church, where I am not comfortable throwing on my baseball caps. I'll freely admit, I hated the way I looked so much that sometimes I just didn't go because I was frustrated at the Miki-patterned baldness. Slicking it back into a bun or ponytail is the best way to hide it but still, I have a mullet. But the hair is coming back. Finally. Guess I have one less reason to use to ditch being seen. Which is a good thing. It might be a little big more grey than I would like, more grey than it was in December, but considering how close to dead I was, I don't have much to complain about there. Plus I know some people who are just magical in that department.

Now for the party in the back.

Other good news I learned and overheard at conference, whether it been over a podium and officially announced to the masses or overheard in discussions with doctors and researchers included statements such as, "They're having tremendous success overseas with completely different approaches to the treatment of PH, using meds that treat currently treat cancer"; "We're constantly meeting people every DAY who have and continue to keep beating the odds"; and the one that almost instantaneously made me tear: "They're almost to the point where they might take the 'terminal' part away from the description of this illness because people are doing so well". Conference was amazing, its a strange conference that includes not just patients, but the doctors and researchers and major drug companies, all together, all interacting, all genuinely concerned. Patients roll up their sleeves and head to the research room and give blood samples since you'll never find this many patients in one gathering, anywhere else in the world. And clearly its working.

Hope exists.

You might not ever know how good for my soul it was to come home after that, and see even more people that I love, and to reunite with people I hadn't seen in a long time. I haven't had that much fun in one summer in such a long time. I can't even count the number of times I nearly peed my pants laughing so hard this summer. Which is what I'm relying on to get through this pleurisy phase since I'm not going to lie, hurts. Its the kind of pain that hurts with every breath, to the point where you almost don't care if you would stop breathing. But then I think of how many more people I still have to reunite with while I'm still here on this planet, and I'm motivated to fight again. And the line from "When Harry Met Sally" comes to mind:

"AND I'M GONNA BE FORTY!!! ...someday... but its OUT THERE!"

6 comments:

  1. I always sucked at math, but will be looking forward to counting on your appearance at our 25th reunion.

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  2. What a great birthday post! Can't wait to be hearing a lot more good news coming from your end. Which end, I can't say. You are friends with Kelly. I'll take what I can get, I suppose. :) Love you!

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  3. There was a lot of good things in there! We are hoping for the best for you!

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  4. I am so happy for you and so grateful for your friendship. You continually reassert yourself as my true hero! I look forward to your posts. May you continue to find hope and win that fight that most of us will never truly comprehend. I admire your spirit and hope that some of it rubbed off on me in the short time we have been friends. Keep on confounding those doxtors!! :)

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