I started blogging a while ago and just didn't publish it. My previous posts cover more of the lung transplant process and some of the thoughts I've had up until this point. This process has been pretty fast so far. I was informed I would need a double lung transplant on April 5th. But the process (in my mind) wasn't officially started until today. It might be helpful to read the previous posts (if you're interested) so the things you read aren't too shocking. You know I tell it like it is... no matter how blunt or harsh it might be.
Jeff and I met with one of the transplant doctors today for an evaluation. It was a pretty good meeting! We both got a really good vibe and had all of our questions answered. I am ready to get the party started.
My heart numbers are bad. The doc thinks my wait time will be much shorter than I had sort of originally prepared for. The trick is to get my new lungs before my heart gets so bad that it won't recover. It was nice to hear that they transplant quite a lot of PH patients here. While the first few weeks are the most risky (I'll be on heart bypass for the 6-12 hr surgery) when my weak heart has to handle the trauma of transplant, once my heart starts to recover the long term survival for PH patients is actually quite a bit better than the average Joe. The numbers they throw around are a 50% survival rate at 5 years post lung transplant. But PH patients actually have more like a 50% survival rate at 8 years. That's really good!
I am nervous, excited, terrified, and above all, tired. I know that I am really only trading one disease for another, but at least lung transplant can be a way for me to feel more like my old self again. PH is an exhausting disease. It truly drains my emotional and physical strength. This transplant has given me more hope than I've had in years. It's invigorating to think of the possibilities!
I should start testing next week and will have more information after the doctors review all of my test data. I'll also start education sessions and a bunch of other stuff. There is a lot of information to absorb and a lot of expectations (from the medical team) for my friends and family that will be closely involved with this process. Just things like not being able to drive for the first 6 weeks, yet I will need to be seen by the doctor 2-3 times a week for the first 3 months. I will have rehab and tests and counseling and all sorts of stuff. Pretty intense! But I am definitely ready.
But probably the most important thing is to make sure we have some friends willing to take Jeff out for a beer once in a while to keep him sane :-)
I'll keep you posted!
Wow Katie! Exciting, scary, thrilling, but most of all, inspiring. Your positive vibes are infectious! Thanks for letting me/us join you on this journey.
ReplyDeleteKatie, I agree 100% with Jody. Especially the inspiring part. I would imagine that are scary as the thought of a lung transplant is, the thought that you'll be able to function more normally trumps that. My friend Pat, (whose son had the lung transplant) said to NOT GIVE UP! That there would be lots of ups and downs before (her son was up 4 times for surgery - once on the table under anesthetic - when they discovered something wrong with the lungs) and after surgery, but that the end result is well worth it. He developed kidney problems because of the drugs, but has it under control with diet. You will do GREAT because of your motivation. I know it could be soon or years, but whenever, just let me know when you need me, and I'll be there.
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