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Transplant anniversary

Posted by cromme50 @cromme50, Jul 18, 2023

Today I celebrate the 25th anniversary of my liver transplant at Mayo Rochester. There have been peaks and valleys but I am alive and have good quality of life. There are no words to express enough thankfulness to the donor and to the family of the donor as well as to Mayo Arizona who has kept the candle lit for all these years. Most of all I am thankful for an amazing husband who never wavered, no matter how hopeless some of those valleys were over 25 years. I hope my post makes you all realize that YES! it is doable, one day at a time and one foot in front of the other. A transplant truly is a second chance at life, don't squander it. Be a good steward to your donated organ, treat it with respect and appreciation for the second chance it is giving you.

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Ginjah320 | @jinja320 | Jul 20, 2023
In reply to @cromme50 "Hello Ginjah! Thank you for your kind wishes. I am intrigued by how it is that..." + (show)
@cromme50

Hello Ginjah! Thank you for your kind wishes. I am intrigued by how it is that you went into rejection after 20 years. I did not think that was even possible, provided the level of immuno suppression is monitored. Would you mind sharing the circumstances? Thank you again!

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It wasn’t a smooth 20 years but I thank god because it could have been worse.. I was in an out of the hospital a lot. When I had my first surgery being I was 17 years old, being so young , I struggled with being sick and not healthy like other kids my age. I wanted to be normal. When things were going well I missed meds, didn’t stick to diets that were recommended. After learning about possible rejection I started talking my meds correctly and got a good 8-10 years. My initial diagnosis is schlorosing colongitis. It wasn’t until learning I need a second surgery that I learned PSC can return. This time around I’m more careful and keep up with meds bloodwork everything.

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Ginjah320 | @jinja320 | Jul 20, 2023
In reply to @arqui02000 "Ginjah the second transplant was done immediately or you have to wait the common process, list..." + (show)
@arqui02000

Ginjah the second transplant was done immediately or you have to wait the common process, list according to MELD SCORE and then wait until you name is first on the list?

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I did not have to wait out the process. I went through the steps to being put on the list( I had also just consented to taking a liver from donors with hep b) I really didn’t want to go that route but doctors assured me that could treat the hep b. However God stepped in. I call it a tragic miracle. A family of mine had a tragic accident and his parents donated a kidney and his liver to me.

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arqui02000 | @arqui02000 | Jul 21, 2023
In reply to @jinja320 "I did not have to wait out the process. I went through the steps to being..." + (show)
@jinja320

I did not have to wait out the process. I went through the steps to being put on the list( I had also just consented to taking a liver from donors with hep b) I really didn’t want to go that route but doctors assured me that could treat the hep b. However God stepped in. I call it a tragic miracle. A family of mine had a tragic accident and his parents donated a kidney and his liver to me.

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Ginjah I am really worried for a second transplant I have to follow the process this taking to long here in California may be by the time this liver has no well function I am to old. If God made a Miracle is because you have a new goals. Thank God you have a third chance to live

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cromme50 | @cromme50 | Jul 22, 2023
In reply to @footballmum "Congratulations. I'm approaching my 3 Rd transversary. 25 years so far away, but I'm sure the..." + (show)
@footballmum

Congratulations. I'm approaching my 3 Rd transversary. 25 years so far away, but I'm sure the time will pass quickly. Your post has been such a comfort to know it really is possible. Thank you and again CONGRATULATIONS 🎉👏

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Time does pass. After my transplant, a friend knew someone with a liver transplant out of state who was 5 years out and I kept asking how she was doing. Then, 5 years sounded like a lifetime. Thank you for the congratulations and hang in there! the day will come when you will go about your day then realize you did not even think about the transplant all day. That will be a good day, with many more to come. Hugs!

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cromme50 | @cromme50 | Jul 22, 2023
In reply to @jackiez "Maybe they have evolved over the 20 years, as I was not given any of those..." + (show)
@jackiez

Maybe they have evolved over the 20 years, as I was not given any of those restrictions. They were more worried about dust and hay. I was back in the saddle 5 months after transplant. I could not have given up my horses (or dogs). They aided in my recovery immensely-whether it was riding or walking my dogs to get my strength and stamina back and to feel like the old me.
I had a congenital heart issue with related pulmonary hypertension that caused the need for the heart-double lung transplant.

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Way yo go, Jackie! Glad to hear that the restrictions were eased. I could not agree more, having our furry friends around during recovery is essential. For one thing, they don't ask a ton of questions lol and never make you feel like you are odd. Be well, my friend!

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cromme50 | @cromme50 | Jul 22, 2023
In reply to @edb1123 "On July 22, I will celebrate my 3rd “Rebirthday” after having an allogeneic bone marrow transplant!..." + (show)
@edb1123

On July 22, I will celebrate my 3rd “Rebirthday” after having an allogeneic bone marrow transplant! I am so thankful to the 20-something anonymous woman who generously donated her bone marrow, a perfect match! I am also so thankful for the wonderful BMT team at Mayo-Rochester for giving me the best care possible! I’m back to living my normal life and enjoying activities with family and friends, ❤️

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I love your last sentence, about living your normal life. I was advised early on to not let the transplant define who I am - yes, it is important but we go through the hardships involved with a transplant exactly for that purpose - to go back to being who we are and live our lives normally. Good for you!

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cromme50 | @cromme50 | Jul 22, 2023
In reply to @jinja320 "It wasn’t a smooth 20 years but I thank god because it could have been worse....." + (show)
@jinja320

It wasn’t a smooth 20 years but I thank god because it could have been worse.. I was in an out of the hospital a lot. When I had my first surgery being I was 17 years old, being so young , I struggled with being sick and not healthy like other kids my age. I wanted to be normal. When things were going well I missed meds, didn’t stick to diets that were recommended. After learning about possible rejection I started talking my meds correctly and got a good 8-10 years. My initial diagnosis is schlorosing colongitis. It wasn’t until learning I need a second surgery that I learned PSC can return. This time around I’m more careful and keep up with meds bloodwork everything.

Jump to this post

I think your post is a good warning to all of us, thank you for sharing. Life has a way of teaching us lessons, in the case of transplants the lesson is compliance. It is wonderful that you had a second chance. Best to you!

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edb1123 | @edb1123 | Jul 22, 2023
In reply to @cromme50 "I love your last sentence, about living your normal life. I was advised early on to..." + (show)
@cromme50

I love your last sentence, about living your normal life. I was advised early on to not let the transplant define who I am - yes, it is important but we go through the hardships involved with a transplant exactly for that purpose - to go back to being who we are and live our lives normally. Good for you!

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Thank you for your comments. I think the best outcome of a transplant is to live a normal life! 😊

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