Sunday, July 3, 2016

NOBODY SAID IT WOULD BE EASY & HAPPY TRANSPLANT-AVERSARY!

I haven't posted in a while. I've had my challenges and didn't want to put up a post that sounded all negative. But nobody said this (being a transplant patient) would be easy.

The good news is my lung is doing well. I'll be going on July 19th for my quarterly transplant check up. They'll give me a good going over and make sure everything is going as it is supposed to.

But I've been having my struggles. Mainly having to do with exercising and trying to regain my strength. I have been working and exercising 4-5 days a week for 18 months and feel I am not making the progress I should. I've been experiencing significant pain in my legs and I would never recover from a workout as one should. The pain got so excruciating that it was keeping me awake at night until 4am and I could not sleep. Walking around the house even felt wobbly. 

The last straw was a 3 mile walk I went on one day and I have never felt so bad as I did that day. My legs felt like they were going to give out on me and I did almost collapse a few times; I was so short of breath I had to stop 6 times, even going to my brother and sister-in-law's house looking for a ride home. Sadly no one was home (I thought it was Saturday thanks to med-head when it was Friday so everyone was at work). I sat on their porch in the shade for a little bit and started out again for home. 

It was the worst walk of my life, pre or post transplant. I have never had an experience like that. I almost sat down on the grass in one of our parks and would have stayed there until I could find someone to drive me home. But I wobbled my way to our house and made it home. 

I had a good drink of water, took a shower (holding myself up by the grab bar) and then took a nap for several hours. By then I knew it was time to contact my Transplant Nurse Coordinator. We had a long conversation about my situation. Every transplant patient is different. Some recover their strength back quicker than others and others never return to where they were prior to transplant. It appears (and they want me to accept this may be my situation) that I am not ever going to be the way I was prior to getting sick. 

My Coordinator said it's possible having only one lung can have an impact on STRENUOUS activity like exercise. Not all do, but it's possible and it makes sense to me. They can't really say 100%. Also my legs may never be the same. I was told what I've been doing is more than most and they know how hard I've been working, which they feel has been a good thing. But at this point the suggestion was to BACK OFF, SLOW DOWN, and CUT MY DISTANCE. 

So that's what I've been doing. It took almost a week for the pain from that last 3 mile walk to subside. I've cut my distance, going less than 1 mile instead of always shooting for 3 miles. Today I walked .68 miles in 18 minutes. 

I will admit to being very frustrated by these physical challenges. It would be so easy to just say "it's too hard, I can't do it and I give up". I've felt like that several times. But I know what it's like to be completely de-conditioned from a year of being sick while I waited for my lung. You lose your muscle conditioning SO fast and I don't want to ever be like that again. So I pick myself up, lace up my walking shoes and off I go for shorter, slower walks. It's good for me and if it goes as I would like, I MAY be able to make progress and go a bit further and a little faster. I can't push it, but I'm hopeful. 

I am so lucky to have gotten my lung transplant and that things are going well. I am here and will be celebrating my birthday in a few weeks. 

Today is my 20 month Transplant Anniversary; a day worth marking and for giving thanks for the Gift of Life. The least I can do is honor that gift and, even if things get hard and challenging sometimes, always remember the gift I was given and the promise I made to do everything I could to care for that gift.

So if that means, adjusting my mind set and goals, then that's what I'll do. I promised never to give up and so I persevere. 

Sometimes it's hard, but then nobody said it would be would be easy!


"Fight Song" - Rachel Platten


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