I am officially on the transplant list as of March 20th. I have already had a couple of offers and one dry run. I waited in the hospital for 24 hours and as I was waiting in pre op, the transplant fell through. The donor lungs simply would not function properly. My surgeon said I would have been in the hospital for weeks on a ventilator and could have had many more complications. I am very much ok with the fact that it fell through. I knew that it was a possibility and mentally prepared myself. I need to have a really good set of lungs. After waiting for 24 hours, I was ready to find out either way. It was a relief to get any answer. I hadn't eaten anything in 27 hours and so I was starving and just ready to stuff my face. I think I was 10 minutes away from having visions of my husband as a juicy hamburger. One day I will get another call and hopefully next time they will be the best lungs for me.
Before I got listed I was able to take my family to Disneyland. We really needed a vacation to emotionally recharge and refresh. It was wonderful to just forget about everything for a week and just enjoy time together and have a blast. It helped me and my husband feel much more ready to be on the transplant list. I can't wait to put a photo album together.
Feb 23, 2017
It looks like I will be placed on the list right around the 20th of March. They are letting me cross a very important item off my bucket list before I go on the transplant list. It is something I already had planned before I knew I would need a transplant. I am stable enough to go ahead with my plans. It is a little scary to know I will be on the list, and there is nothing wrong with feeling that way. It is also a happy thing as well. There's always a whirlwind of different emotions in situations such as this. I don't believe in only acknowledging the positive emotions. Being mentally healthy means acknowledging all emotions and then releasing them. This is a high stress and emotional time so that is why I focus so much on my mental health. I really am trying to keep myself mentally on the straight and narrow so that I can cope with the surprises that are sure to pop up. I just need to get a couple signatures from my eye doctor etc saying that there are no issues preventing transplant. I have started a blog on wordpress.com to sort of tell my story and talk about the different issues involved in Pulmonary Arterial Hypertension as well as transplant. I'm not really one for writing blogs, but I feel like it could be an important tool to help people learn to have compassion and maybe even help someone like me. It really could help my son know me when he is older.
Feb 06, 2017
Last week I met one of the lung transplant surgeons. He seems like a really good person and a really good surgeon. He explained what the surgery would be like and how long I could possibly be in...
Jan 08, 2017
1-8-17 I have one more 24 hour test to undergo and a visit with the transplant surgeon. Both will be completed this month. After that my transplant team will get together and decide when I should...