February 21, 2012

Tx seminar #...I'm losing track

Another transplant seminar today.  This was a good one, covering post-transplant recovery and drugs.  One doctor (nurse? I never quite caught it) talked about what happens from the moment they staple you shut and wheel you into recovery.  There was another patient there six months post who confirmed what was being talked about.  Some of this included complications and that these speedbumps are considered part of the journey, not a step backward.  This patient had a SEVERE couple of complications and nearly died.... but trust in the team, dedication and adherance to post-tx regimen...and he's doing really fanstastically well.  Looks great, sounds great, heavier body weight than ever in his life (from 104 lbs at time of transplant complications to 160 lbs now).

Nothing terribly surprising in the post-tx process.  I've heard it all before from other patients.  Also nothing surprising in the pharmacist's discussion of post-tx drugs.  I did learn a few new drug names and that some are an either/or choice - that you are on certain drugs at the same time.  Also reassured that while there will be some experimentation in the tailoring of the drug cocktail to me over time, that the process is the same for everybody and ultimately everybody arrives at a good drug combo.  I sent a scan of the summary sheet of the handout to my mom and sis.  I did learn one blood-thinning drug is taken via injection.  The pharmacist was surprised when I asked how it compared to the ease of, say, a Lantus or Novolog pen injection.  She described what's possibly an even easier injection! Great.

So... I am substantially mentally prepared for the after part.  I know it's gonna hurt like hell for a while, but that pain medications will take the edge off that, and I'm not one to be afraid of some pain anyway.  Don't get me wrong: I am vastly appreciative of lidocaine and the like, but will not shirk at some post-operative pain.  I found myself wondering how it would compare to the pain I felt after my motorcycle accident, where I was in astounding pain from head to toe.  Enough so that not only did Percoset do nothing at all, but I didn't even know until a couple days later that I'd broken my leg at the top of the tibia.

Of note: I talked with the patient sitting beside me, a young woman named Rachel.  I had already retrieved a mask and put it on, but I wanted to make sure I wasn't sitting next to another CF patient.  Turns out she had something else quite unique in the people I've met so far:  Lyme disease.  This autoimmune syndrome has destroyed her lungs.

We got onto the topic of PFTs when she asked if I'm listed and I said I wasn't, but since my numbers now regularly dip below 25% FEV1, here I am: evaluated, trying to maintain, learning, biding my time.  She was surprised.  She's in the high 30's still, but sats in the 80's if she so much as stands up and is on two liters of O2.  I suggested that it may be unusual, but really we were talking about two different measures: PFTs measure volume and muscle tone, whereas saturation measures how viable the remaining gas exchange tissue is.  Clearly, her autoimmune has damaged her alveoli all over without as much scar tissue as I've got. On the other side, I have 70% of my lung tissue remaining, about 30% is viable gas-exchange real-estate, but seems to be functional, hard-working real estate.  So, low FEV1, but can remain at acceptable oxygen saturation.  I did admit that I should take more measurements during exercise and when I wake up in the middle of the night; try to get a picture of THAT.

Well.... the evening went very long, though was worth it.

Two quick items in other news:

1)  I'm setting up a cat TV.  The tank is set up and cycled and I will go get three guppies tomorrow from a breeder that is offering all-black fancy guppies.  A good starter for me, I think, and the cats should certainly enjoy it. :)

2)  My friend and kinda mentor Jerry Cahill got the call tonight for new lungs.  That's all I know right now.  Whether this turns out to be a dry run (most people have one or two dry runs and I met a guy who's had EIGHT so far) or if he wakes up tomorrow a partially new man, time will only tell.  I wish Jerry all the best no matter what.