Celebrating two years

My two-year lungiversary went by with little fanfare, much to my dismay. The only ones to acknowledge it were those within my household. But, that is because I have declared it an official holiday, penciling it on the calendar and announcing it days before. For me it is a second birthday. I'm sure it's a feeling that only fellow transplantees can understand. Silly I suppose. But when cards and greetings didn't roll in, I felt a bit... a bit, well, forgotten. Then I had remind myself that almost dying and getting a transplant was a battle that was how long ago? One year? Great. Two years? Come on. Life goes on. No one wants to have to remember to celebrate ME twice a year. Except for ME.

Thankfully, I had less anxiety this year as I reached the date. I think this is because I now have a relationship with my donor's mother. At this time last year, it bothered me greatly that I didn't have anyone to focus that energy on. I had reached out to the family with a letter through LifeBanc and told them how much I thought of them each and every day, and how much their gift meant to me and my family. I wanted them to know that every single breath I take is because they said yes to organ donation. But, by the time I had my first anniversary I had not heard back.

Eventually, I did hear back and since then, we have exchanged several letters. This communication means so much to me. Even though there are no words powerful enough to express the thanks I feel for this gift, at least his mom knows that this wonderful gift is allowing me to spend more time with my family, and is allowing me to selfishly celebrate two birthdays.

Health-wise I am holding in there. I'm working on getting that room in the ER named after me. Yep, I'm back to my old record of going in once a month with the usual--migraine, vomiting, and dehydration. I don't know why it's happening and wish it would stop. Also, I recently found out the pain in my left ankle I have been walking around with for over two months is tendentious. I did not do anything to it... supposedly the medicines can cause it. I guess I have been getting so used to walking around in pain and not realizing what is normal, or rather the new normal. Basically any time I have had aches and pains the doctors usually tell me the medicines can cause it and then they shrug it off. So with this, I just kept shrugging it off until I couldn't take it any longer. But surprise, now I am hobbling around on a walking boot. I'll see the podiatrist again in a couple of weeks to see what my next step is.

Certainly not the fanfare I was looking for, but I hobbled right along and continued my celebrations throughout the weekend. I look forward to celebrating my real birthday soon enough... and perhaps I won't be hobbling around for that one.

One year!

Happy one year to me! I am officially past my one year anniversary of my lung transplant. In the transplant world this is a huge milestone. In a more recent article of the Journal of Heart and Lung Transplantation it states that "patients who live past the first year... have a sixty-three percent likelihood of being alive ten years post... and a twenty-seven percent chance of being alive twenty years post." I like that statistic more than the one I normally see with the median extended life of  6.5 years.

I got emotional. Mostly because I was thinking of my donor's family and his death. I know some people will say to not let this bother me, but that is easier said than done. His life is important to me. The anniversary of his death, such a tragedy, brought hope into our lives. The end of his life brought continuation to mine. (And perhaps to several others.) I will always honor his memory as part of him is now part of me for the rest of my life.

I will be going back to Cleveland in a few days for my one-year check up, complete with biopsies of the lungs to check for rejection. We are hoping for good results.

I'm still struggling with the usual side effects. I guess it's no longer news and I feel as though I should stop reporting them here with risk of boring you. I've been in the ER at least once a month and that is getting really old. The Botox injections in my head and neck have helped decrease the frequency of the migraines somewhat, but when I get them, they are still bad. The nausea and vomiting have not decreased. 

I was also caught off guard last month by a bout of food poisoning. It reminded me how fragile I am and how careful I need to be. Generally I feel less anxious about my limitations and transplant life, but still have my moments when I am reminded of how much I miss how things used to be before I was sick. I can't dwell on those things. I've had to make changes, and I continue to move ahead or else grief consumes me.

Onward. A new year awaits...