Week 2 Post Transplant Rehab Done

I thought these holidays would take me out.  I had 3 days in a row at the hospital this week & will next week.   But I did ok.   I can do a bit more each day.

My therapy team is awesome.  They are really getting movement & stiffness out in my shoulder & left arm which is significantly weaker. Also a pain in the butt since I’m a lefty.  Luckily, I’m ambidextrous enough to compensate enough.   It’s finally coming along.

I’m reminded of the true reality of transplant.

One of the women in our hospital support group on social media died yesterday. She had the transplant & got her lungs but took a turn for the worst & went into organ failure. The surgery was too much for her body.

It hit us all pretty hard because she was so supportive of others even though she spent months in the hospital prior to her transplant.  She was a sweet woman.

But sadly, not everyone comes through this journey.

Yet another reason I’m grateful for how well I’m doing. Why I take things day by day.

I built up 5 months before surgery as sick as I was. I think that made a difference, but not everyone can do that & even some that do face complications.

I was prepared for best & worst but luckily am farther along than I thought I’d be.

That 9 month wait and the year before really took their toll, I won’t lie.

I’m just grateful I have a wonderful support system & friends & family to lean on & did during that time.

Not everyone does.

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8 thoughts on “Week 2 Post Transplant Rehab Done

  1. It doesn’t feel appropriate to “like” this post considering the passing of your friend. But I am glad you are doing well so far and feeling fortunate. I wish you a happy new year with increased health. Much love.

    Liked by 2 people

  2. I’m happy to hear the transplant recovery is going well so far. I’m sorry to hear about your friend passing, that must have been incredibly hard news to get. Prayers to you for continued recovery!

    Liked by 2 people

  3. Nikki, From afar, I’m guessing you are doing well. In my case, since my wait was short and I was unconscious, I felt like I had 2 very different recoveries ……. the physical part, which started off with me being very impatient and trying to push and “will” my body back to what I thought was my “normal” ……. some months later, I learned slowly that I had recovered and was cruising along through life at my “new normal”.

    The second recovery is pretty much on-going …….. the mental and emotional recovery. I had battles with “survivor’s guilt” and the “why me” syndrome …… the drugs that we are on early post transplant, would have me crying while watching HGTV. I have most of my demons under control now …….. but at times, I’m still consumed with tremendous amounts of angst. Last night we rented “Sully” …….. he saved 155 lives when he did the water landing in the Hudson …….. I cried through better than half the movie. The emotional part can be rougher than the physical part for some of us.

    And, when friends that have been on the transplant journey leave us …….. we grieve ….. A LOT!

    Hang tough and keep on going. I’m pulling for you.

    Be well – Don

    Liked by 3 people

    • After 13 years of lung disease, every so often I’d have to re-learn my body so I just chalk this up to that. I’m just relieved and pleasantly & gratefully surprised to be doing what I feel is ahead of the curve I had anticipated. I just take it a day at a time and still have a lot of emotion, mostly though it’s relief because of how hard the last 3 months of the wait were, there were times I felt like I wasn’t going to get to the other side of this & I did everything I could but situationally was deeply depressed because the only thing I knew would help would be to get transplanted and start to get to the other side of that regardless of what happened because my quality of life was so poor.

      Each day I wake up grateful to breathe, grateful to be able to push myself in healthy ways in rehab, grateful for family & friends who stepped up to help take care of me during this time, and grateful for my wonderful doc and surgeon who I can be fully open with and who also care enough to explain things in a relatable way to my family and friends.

      I am truly fortunate.

      Liked by 1 person

  4. Nikki, I am so grateful for your donor! I am so grateful her lungs are gonna keep you around for a long time! and feeling wonderful, because you’re breathing on your own. I have watched your blog and can tell you I thanked God for months for your donor to have awesome lungs for you. I didn’t want anyone to pass, but for you, Nikki, I prayed for good lungs. I’m so heartfelt and proud of your journey for all these years. I have never met such an educated, loved, awesome and so much more woman that I respect and admire than you Nikki and I’m so grateful you don’t have the tubes marring your beautiful face. I apologize for not writing you sooner, my year pales compared with yours but 2016 is a year I’m glad is behind us. You get to celebrate breathing on your own! It must be awesome sauce to wake up and breathe! I’m so thankful your recovery is coming along at a righteous pace and you can only get better, better, better!
    I’m sorry for not being there the whole time for you but 2017 brings new life into our lives and may God keep watch over Her daughter, Nichole and bring you many wonderful days to enjoy & revel in. I love you and am awed to be your friend of 9(?) years. You have taught me a great deal of insight about LAM and how cruel life can be but you also taught me that there are rainbows 🌈 all around us, in spite of our everyday woes, we just have to search them out. I’m getting better but this is not about me but how you have made it almost a whole month and I’m crying tears of joy for you, Nicole. I love you!! I am glad & ecstatic that your progress has been tough but being the fighter you are, we all expect you to be around for years to come and I am so delighted and full of love for you. I’m still praying for you to improve everyday. God bless you, Nikki. Love you to the moon and back. 😘❤🙏😇🌺🌸🎆🎊🎉 Happy New Year to you and many more to come!! Lisa

    Liked by 2 people

  5. You go girl! You are such a fighter. You are progressing so well. I’m so happy for you.
    I’m so sorry about your transplant friend.
    Her story hit me hard.
    I’m so very happy that you were able to prepare so much for the transplant, and have so much support.
    You are an inspiration.

    Liked by 2 people

  6. So glad its going well and you’ve got that support team Nikki! We miss you on Twitter!

    Liked by 1 person

  7. Hope you are doing well ……. haven’t heard from you in a while. ❤

    Liked by 1 person

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