musclemania70
New member
Please share if you have any experience w this.
Cystic Fibrosis Forum (EXP)
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Anyone on here with lung AND then Kidney tx?
- Thread starter musclemania70
- Start date
Person I met on a fb board years ago by the name of Christy. Don't have her contact info, but I'll see if I can find a link to her blog and send you a pm.
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BreathinSteven
Guest
I'm here with a lung then kidney transplant! I received two beautiful, new lungs almost 15 years ago. A few years later - after anonymous letter exchanges - my donor family said they would be open to direct contact... My wife and I met them - my donor was a beautiful 17-year-old girl named Kari. She was a star middle-hitter on her high school volleyball team. Kari's mom connected me with dozens of her friends and volleyball teammates. For the past 10 years - Kari's friends have driven hundreds of miles to participate in an athletic stairclimb on my team named for Kari: Kari's Klimbers.
With my CF and the drugs we filter treating that for 39 years - my kidneys were already slightly compromised at the time of my lung transplant. My creatinine was on the very high side of "normal". It gradually crept up. about 11-12 years after my transplant, my kidneys began to fail and I needed a kidney transplant.
Kari was #13 on her high school volleyball team. Just over 2 years ago, #7 gave me one of her kidneys. Alex was Kari's neighbor, friend and volleyball teammate. I actually met her the first time I met Kari's family - and then developed a relationship with her beginning a few years later when I started climbing. She was among the first of Kari's friends to climb with me. When she heard I needed a kidney - her hand was one of the first up, and the highest, offering me one of hers. I was transplanted in May 2012 and he kidney has been working amazingly ever since.
When it comes to the actual surgery - I like to use this comparison: Lung transplant is to kidney transplant as the Indy 500 is to a Pinewood Derby...
Let me know if you have any questions - I'm happy to answer what I can - I'm happy to provide you with my email if you want to correspond that way...
Love, Steve
With my CF and the drugs we filter treating that for 39 years - my kidneys were already slightly compromised at the time of my lung transplant. My creatinine was on the very high side of "normal". It gradually crept up. about 11-12 years after my transplant, my kidneys began to fail and I needed a kidney transplant.
Kari was #13 on her high school volleyball team. Just over 2 years ago, #7 gave me one of her kidneys. Alex was Kari's neighbor, friend and volleyball teammate. I actually met her the first time I met Kari's family - and then developed a relationship with her beginning a few years later when I started climbing. She was among the first of Kari's friends to climb with me. When she heard I needed a kidney - her hand was one of the first up, and the highest, offering me one of hers. I was transplanted in May 2012 and he kidney has been working amazingly ever since.
When it comes to the actual surgery - I like to use this comparison: Lung transplant is to kidney transplant as the Indy 500 is to a Pinewood Derby...
Let me know if you have any questions - I'm happy to answer what I can - I'm happy to provide you with my email if you want to correspond that way...
Love, Steve
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windex125
Guest
OMG what a great story - you are truly blessed - this is the type of story that makes me regain my faith. I am a woman with CF as well, only one functioning lung at this time but I did just celebrate my 60th birthday in December. Have a lot of other issues as well, but nothing I haven't been able to take care of with more meds. Best Regards to you, you've made my day....Pat
CFfisherman
New member
I would be interested to know as well. I received my lung transplant about 14 months ago and my kidneys are severely damaged.
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BreathinSteven
Guest
Hey Musclemania and/or CFfisherman -- what, precisely, do you want to know about a kidney TX after lung TX??? Are you interested in the process? Surgery, recovery, life afterwards??? Do you have the possibility of a living donor? Or are you relying on being listed and waiting for a kidney? Have you begun the process yet?
What aspects are you interested in understanding??? Love, Steve
What aspects are you interested in understanding??? Love, Steve
CFfisherman
New member
I was curious about how you felt before your transplant. Also, how was your recovery? I had a very tough road with my lung surgery. As far as living donor, I don't think I could ask anyone to do that for me.
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BreathinSteven
Guest
Hi Fisherman... I was dragging a bit before my transplant... My GFR was down around 15 -- my creatinine was between 3 & 4 -- I was at the point where I might have been on dialysis in a few more months... Because we struggled so much before our lungs, and lived in a constant state of exhaustion -- being in kidney failure, to me, didn't seem nearly as bad as that -- so, it's all relative... I would not have told you that I was that tired -- but my wife confirmed that I was sleeping/napping much more, and not as perky...
I had a good lung transplant recovery -- and a good kidney recovery too... In the grand scheme of things -- I like to explain that lung transplant is to kidney transplant as the Indy 500 is to a pinewood derby... it's a MUCH easier procedure... and, afterwards, there might be a bump in our immune suppression regimen, but not long after, we're basically on the same if we're lucky... I was back to work less than four weeks after my surgery -- but, again, I had a good recovery...
I didn't think I could ask anyone to be a living donor either -- you just never know what is going to happen... When I made it known that I was in kidney failure and that I was waiting for a kidney transplant -- about a dozen people stepped forward over the next several months and told me they were interested in being tested to see if they matched... Whatever your social network -- church, civic group, whatever -- it's worth testing the water and just letting people know. There are some amazingly compassionate people out in the world...
Love, Steve
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BreathinSteven
Guest
Thanks so much, Autumn!!! I hope you never need a lung or liver or kidney transplant -- but if you ever do, I hope you're as lucky as I've been... It has been quite an amazing ride. I never, ever imagined it would feel this amazing just to breathe -- and I never, ever imagined I would be surrounded by so much love...
Love, Steve
beautifulsoul
Super Moderator
Sorry for such a late reply but if anyone else needs more info about a Lung and kidney transplant let me know. My kidneys were already damaged BEFORE transplant from IV Amakacin. They knew I would eventually need a kidney transplant but didn't realize how soon my kidney function would rapidly decline. I had my lung transplant in March 2007. Kidneys were shot down almost immediately after lung tx because of the high doses of anti-rejection medication. Needed dialysis 3 days a week until I received my kidney transplant in July 2007. My mom went through testing right away to see if she was a match and she was! a perfect one!
For anyone who may be wondering, "why not do lung/kidney transplant at the same time" My center said that was a much risker operation and that the recovery would be longer.
Here I am today, Kidneys working just fine. Lungs breathing freely. Newly married. Happy to be here
For anyone who may be wondering, "why not do lung/kidney transplant at the same time" My center said that was a much risker operation and that the recovery would be longer.
Here I am today, Kidneys working just fine. Lungs breathing freely. Newly married. Happy to be here