I was diagnosed with Idiopathic Pulmonary Arterial Hypertension in 2007. I received a double lung transplant on June 23, 2012. This is my (at times hilarious) story.
Thursday, July 12, 2012
A word or two about transplant
Hopefully I'm preaching to the choir here, but if you haven't made your end-of-life decisions and desires known to some people in your family, PLEASE do so! It's never too early to talk about it. No, it's not a fun subject but it also doesn't have to be horribly depressing, either. I hope my story of survival because of someone else's gift may have compelled you to become an organ donor. You never know who you'll help. A mom. A dad. A young kid. A crazy cat-lady like me.
Unless you are a transplant recipient you can't understand the love and deep respect I have for the donor and the donor's family. I had some time left, but obviously my heart was NOT happy about it. I am not sure I would have pulled through a few months from now. I am so grateful.
Also know that every transplant center interviews every single person. Some are not considered for transplant. Some are. Your attitude and support group have A LOT to do with the acceptance process. Hospitals don't want to transplant people who are ho-hum about life. They want people who LOVE life, who embrace everything it has to offer and who want to take this second chance at life and run off into the sunset with it. They want fighters. The surgery is tough on anyone, but feisty people are more likely to pull through. So know that your organs are going to a very select group of people. Well, I hope none of you ever die! But I think reality might have different plans.
Today is my last day here! Thank goodness. I'll still be here most of the day tomorrow, but at least it will all be part of the check out process. I am not freaking out yet about being on my own with all of the meds and the hand sanitizer... but tomorrow is another day... They took oodles of vials of blood today (my guess in anticipation of my departure). I am SO glad the support network here is so good. The Transplant Support Group is full of people I can call with questions, I have access to the transplant pharmacist and the rest of the transplant team with just a phone call (if the number works...).
Really, the cards have been so awesome to read. I got one the other day from this cute little thing I met at the knitting sale in Maryland last December. She is such a sweet person and we had a GREAT time talking. I was on oxygen, so I was kinda stuck and it seemed like she wasn't a huge fan of crowds. So we sat over to one side. I kind of lost touch with the knitting group I was involved in with the move and the whole transplant thing, but she sent me a card!! It made my whole night! Her daughter drew me a picture and it says to get well soon. Cutest damn thing I've ever seen. The fact that she took the time to write me such a nice card means a lot to me :-) Thanks IndigoRose!!!! And the comments on my Facebook page and about my blog mean a lot to me too. They all make me grin ear to ear, which helps keep my spirits up. I can't thank all of you enough for all of the support. I was surprised how much I needed all of you to help keep me motivated in here to keep getting better.
This last day is taking forever! I can take a shower now but I am gonna wait til I am at home. Ahhh.... my own shower and my own bed. I am also excited to have more places to go. I can sit out on my back patio and watch the birds and my garden. I love just sitting on my back patio. My PH doctor stopped by today! I was so excited! I am gonna miss him :-( Big pouty face. I hope I see him around the hospital every so often. I am so glad I listened to him and got this done right away. Sometimes I am not an obstinate fool! I kept telling him that he just wanted me to get a transplant because I was a "difficult" patient and he would be rid of me... but I was just kidding :-D
For those who live in the area, we would love to have visitors over to the house! I will post on here a bunch of rules and regulations for visiting someone with absolutely NO immune system. I'll try to post that stuff in the next few days. We retain the right to squirt you with hand sanitizer at any time we deem necessary ;-)
And remember that I can't have any fresh flowers or plants (cut, potted, or otherwise). They can have the fungus aspergillus and it's a real bitch to get rid of if I happen to get it.
Boy, this has been a bit long and rambling. Sorry about that! I am really bored and looking at places to vacation in Maui in a year was making me happy yet making me a bit depressed that it'll be close to a year before I should fly anywhere. I am gonna try to get some sleep tonight and I'll post again once I'm outta here!
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