Transplant Story: Life after transplant- a comparison and contrast

 

So, what's it like walking around with someone else's lungs in your body? It's pretty darn amazing, that's what it's like. And, it's also pretty ordinary.

Amazing because I can walk and jump and go all day and not once have to sit to catch my breath. Notice I didn't say run. That has more to do with lack of coordination and muscle tone on my part, not lack endurance for the lungs.

Ordinary, because they just feel like mine. They work in harmony with my heart and the rest of my vital organs to get me through each day. Just like they've always been here. I've heard others say the surgeon told them the lungs were a perfect fit, or that they were pristine. I don't know if the surgeon told my family this, but I've never been able to get any of the doctors to tell me one bit of info about these lungs. I don't know if they came from a male or female, young or not so young, tragic accident or suicide. I know nothing, but once we jumped those initial hurdles, these lungs and me, we go together quite beautifully.

Back in 2000, the first time transplant was mentioned, I went through the grueling evaluation process at UNC. Towards the end of the eval, I sat in a tiny exam room with a pulmonary doctor and a surgeon and they set about to scare me to death. I left certain I did not want a transplant. I remember something being said about the short life expectancy and the horrible side effects then I heard a lot of blah, blah, blah and I wanted to run.

When I went to Duke, I got some of the same speech, but not the tone wasn't as ominous. The main difference being, this time I knew I was getting close to the time. The first go round, I wasn't on oxygen, I was working full time. I felt healthy. Especially considering my lung function was about 25% at that time.  Then several years ago, maybe 3 or 4 I had to start wearing oxygen at night. Then with activity, then pretty much full time. Things were progressing. I tried very hard to slow the progression. I tried to eat healthy foods, took vitamins for respiratory health, avoided anyone who was sick and did what my doctor told me to do. I did my breathing treatments every day, I went to the doctor the first sign of infection and I took all my antibiotics. In the last couple of years it required IV antibiotics to adequately treat infections. I put a lot of effort into trying to maintain what little lung function I had left. 

Even being oxygen dependent, with 17% lung function, I was not excited at the prospect of transplant. Still, had those horror stories in my head. But somewhere along the way I learned about a couple of online support groups. The members have either had or are awaiting transplant and or their families/support people. Through these groups I met more and more people living a good life after transplant. 5, 10, 15 even more than 20 years out. Sure, there are those who struggle, but I've never heard one say they wish they had never had the transplant. No matter the struggle, it's always better than the struggle to breathe. This gave me a glimmer of hope that life would be better. I never considered myself sick and thought that even with my condition, I had a wonderful life and I didn't want to roll the dice and risk shortening that life. I would have rather lived with limitations than had my life span shortened. That was crazy thinking because as we know, we aren't guaranteed one minute. And I would find out after surgery, those tired old lungs of mine didn't have a lot of months left in them.

So, I hope I have many years ahead of me. Years to watch my children grow older and my grandchildren grow up. Years to go on adventures with Mitch. Years to spread the word about organ donation. No matter what the future holds, I have not a moment of regret . 

 

This was in my first fortune cookie the week I came home

That was a lot of talking and I still haven't said much about life after transplant. Well, they told me it would be a lifetime of meds, and that's true. I take a lot of meds and some of them have unpleasant side effects, but are they debilitating? Do they keep me from doing anything I want? No! Well, maybe a few things. I have to be very careful in the sun because having your immune system suppressed makes you more likely do develop cancers, skin cancers in particular. Sometimes I wear a mask in public, but not always. It depends on the situation. I try to be careful but mostly use common sense. I wash my hands a lot and use hand sanitizer frequently when in public. I can no longer eat at buffets, but I never really liked them before anyway. I can't eat cold deli meat because of the risk of listeria. I do miss a ham sandwich, but eh, I'll get over it. Grapefruit interacts with the meds so none of that. Never ate it anyway, not a problem. I have to be careful when working in the yard or gardening because molds and fungi (ha, isn't that a funny word) live in the soil and thrive in rotting leaves. At first, I said no problem. I haven't been interested in gardening for years. Well, it turns out, I just didn't feel up to gardening or yard work. I actually had to make Mitch let me try using the push mower (with a mask of course). Just to see if I could. I was smiling so big behind that mask, because yes, I could! No problem at all. He finally got all antsy and took it away from me, but I could have continued. Now that I have energy I want to work in the yard and plant flowers.

I enjoy eating (a little too much). Before I ate like a bird and had very little appetite. When you have low lung function, even eating is tiring because it takes precious energy to digest food. I was so thin for years because my body worked so hard to oxygenate, that the calories I took in were needed to simply fuel basic life functions. While waiting for transplant and in the weeks after, I was encouraged to (more like instructed to) gain weigh. Eat, eat, eat. Eat high calorie foods and eat often. At first it was hard, still no appetite and nothing tasted good. A physical therapist at pulmonary rehab looked at me one day and said you have got to eat. Unless you throw up, eat. It doesn't matter how it tastes, just get it down.  So, I went home that day and at some chips. They weren't good, but I ate them any way. The rest of that day and the next and the next, I ate, even when I didn't want to. It was about that time I turned the proverbial corner. I started improving and felling better. Then food started tasting better. There were still some things that didn't taste quite right, but more was good than wasn't. I've gained all the weight they wanted me to (and then some). I enjoy foods I've never tried before. Some people believe you take on some of the qualities of your donor, I don't know if that's true, but I have noticed subtle changes. I think it's only fitting that part of this person who gave so much to me will live on in and through me and hopefully shine through.

Yes, there are a few things I can't do (very few) and I have some minor medication side effects (hello chubby cheeks and round tummy). Yes, that's the prednisone and not the donuts!

But there is so much more I can do! I walk an average of 5 miles a day.  I can go for long walks on the beach. I can carry my own beach chair!  I'm so happy to feel as if I can carry my own weight. To live a fulfilled life, I believe it is so important to feel as if you contribute and enhance the lives of those around you. I never liked feeling like people had to do things for me because I wasn't able. Mitch works so hard, and for many years, there were lots of things I just was not able to help with. (like yard work) Now it is amazing to feel like a helpful part of the team.

I will have to be monitored by the transplant team frequently. Right now it's every three months. There will always be the risk of my  body rejecting the lungs, but the good news is, there are treatment options for that. Of course I worry. Every time I have a bronchoscopy I pray that no rejection is found, but I don't let it consume me. I thought I would. Knowing my personality I thought I would live life in constant fear of the what ifs. and the possibility of rejection. Going through what I did after transplant changed me. I think we fear most what we can't see or understand. Fear of the unknown. I feel like I came very close to death and I got through it. But also, I know that during that time, I felt as if I was in the arms of the Lord. Even if I had not made it, I would be ok. From that point on, the rest is just gravy!

Bayleigh made this for me and it hung on the wall in front of my bed, moving with  me from room to room. I read it hundreds of times and it provided a great deal of comfort at times I needed it most.

 

I'm sorry to go on and on so much, but I just want to shout from the rooftops how grateful I am and I want to let others, who may be in the beginning stages of a similar journey, know not to  be frightened away by scary statistics. Those are just numbers. You have it in you to do hard things!

Please if you have any questions, don't hesitate to ask! My hope is that my story can help someone else in some small way.

And if you want to see more of the life these lungs are allowing me to live, check out my Instagram feed. There's a link over on the right.

 

Comments

[pam]

So happy that youre doing well and feeling happy and healthy!

[Betsy]

Thank you so much for sharing this! I'm honestly not sure how your blog ended up in my feed, but right now it feels like a God thing. I should go back and read some of your archives and see if I can remember. Almost exactly 7 years ago we lost my brother-in-law to a brain aneurysm. His life was cut way too short, but he was able to become an organ donor. This time of year, around July 4th, is always bittersweet for me, but reading your story about being on the other side of organ donation brings comfort! I wish you continued good health...enjoy the heck out of your amazing gift!!

[Autum]

Betsy, your comment gave me chills and brought tears to my eyes.  Thank you!  I'm sorry that your brother-in-law passed away,  but what an amazing final legacy. 
I have felt for a while it's important to share my story,  not because I feel special or want any recognition.  I have just felt it my was duty and your comment confirms it for me.  A God thing,  no doubt!
XOXO
Autum

[grumperina]

Thank you for sharing your story. I came here way back when for the crafting, but stayed for the rest of it. I don't have a personal connection to transplantation, so this is very interesting to read! I'm so glad you're doing well.

[Kristie Simpson]

Oh Autum, it was wonderful to see new blog posts from you after such a long absence. Bayleigh is so grown up! I'm amazed and inspired by the tough rode you've traveled in the last year. What an absolute blessing you've been given with this new life! God is so good to us. I will keep you and your new lungs in my prayers, as well as the family that is still mourning their lost loved one. I can't wait to see a crafty post from you sometime in the future :)

[Tricia]

Autum, I'm so glad you're doing well. It surely is from God. He brought you through to a new life. I can identify with what you said about worrying every time you have a bronchoscopy that rejection won't be found. I have rheumatoid arthritis which is an immune disorder and see a rheumatologist every few months (my husband has RA also). I worry every time until I hear back from the lab results. I'm a little worried about cancer or liver damage because once my liver enzymes were elevated but went back down in a few days. I take two heavy meds and sometimes have side effects. God has been good. He has calmed my worries a lot and has given me peace of mind. Bless you and your family!

[Karen]

This really was an amazing story! I am so happy for you that you are doing so well and I wish you continued good health and happiness!

[Chris]

I didn't know you had started blogging again. I started following your blog probably 10 years ago when blogging was new, and what a lovely surprise to see you here again. I saw on Instagram that you were having the transplant, and wanted to comment, but couldn't as I don't have an account with them myself. You are clearly truly loved by your family, friends and the Lord himself and I am sure this has helped tremendously. I want to say so much more, but words just don't seem enough, so I will give you a huge virtual hug {{{{{{hug}}}}}}}
Chris from the UK

[Chris]

I've just read your previous posts, and am in tears here, seeing you like this in hospital. You have been through so much, but look where you are now!!! Reading these posts has made me decide that I am going to sign up to become an organ donor here in the UK. God bless you Autum xx

[Dawn]

I am so happy you are doing well! Thanks for sharing this with us.

[Gretchen]

What a gift you've received - both the lungs and such a wonderful perspective on life. My oldest brother is a two-time liver transplant recipient so my family has been blessed by organ donation as well. Keep shining your light brightly!

[Bruni]

I've been following your blog for some years now, with a little break of course, but you were still on my reading list and now I hear/read your story. I wish you all the best, take your time, do only what is important to you and if the blog isn't for some time, then it isn't. Life is what happens outside the www. And I'm happy that it's a good life for you again. God's blessings for you an den donor!

[Carol]

So happy to hear from you and to know you are doing well! What a journey. God bless you.

[Faith]

Oh Autum, I'm so glad to have checked your blog and to find you in improving health. I have been a reader for probably 8 years - back in the days of your sewing escapades. Since I sew that is how I came across CLD. I missed you when you slowed on posting but never forgot the sweet spirit you exuded in your words here. I totally understood why you slowed posting with Bayleigh growing and all the fun you had with her in her toddler years. I knew you had health issues but no idea how dire they were. I am so thankful that you have received God's gift of life again. I pray that you will continue to progress toward good health and experience happiness like never before. Be blessed and live strong. xo, Faith