Celebrating 7 year Transplant anniversary!

beautifulsoul

Super Moderator
Yesterday I celebrated 7 years post double lung transplant. (^) I'm doing extremely well. Healthy, happy and engaged to be married! :)

Anyone with transplant questions feel free to ask. I'll do my best to answer with my knowledge.
 
So happy for you, hope all stays well and enjoy planning your wedding! It can be stressful at times. Let others help. Good luck with everything!
 

beautifulsoul

Super Moderator
Thank you everyone. I feel so blessed to know you all. ...Pat, the wedding is set for the Spring of next year. On a beach in Florida :)
 

pamelajet

New member
So happy for you. My grandson is going to Houston tomorrow to be evaluated for a double lung transplant. His is eleven. Reading your post helps though I know he will be in Gods hands. It is hard not to worry.
 

cftransplant

New member
Congrats, many more of both anniversary dates for the TX and the wedding. Have not tried the kidney TX yet.

Pamelajet: If an old guy can do a TX, your grandson will do fine.

CF cepacia 63: 13 years out
 

Cbegley

New member
Very happy for you! I do have a few questions though, did you ever have any trouble with getting pneumonia rather often during like the first year post xplant? Do you have any tips on things to stay away from to help prevent this infection? I do know some things but was just wanting your input :) Thanks in advance!
 
D

daniela.l

Guest
I'm a new CF'er to this site but I just wanted you guys to know that I have a blog about my transplant journey. I would appreciate it if you would check it out as I barely made it :)
catchingyourbreaths.wordpress.com

btw, congratulations on such a huge milestone! hope many more years come :)

-Daniela, 18
delta F508
 

kyeev

New member
Yesterday I celebrated 7 years post double lung transplant. (^) I'm doing extremely well. Healthy, happy and engaged to be married! :)

Anyone with transplant questions feel free to ask. I'll do my best to answer with my knowledge.

Hi, I was just wondering if you could give us all a run down of your final few years before transplant.
How sick were you? Was it your lung function or constant infections that pushed you towards transplant?
At what stage did the doctors talk about transplant? e.g. were you on oxygen etc?
Did you make it to transplant okay or were there any "near misses" on the way?
And then what it was like waking up with new lungs and the next weeks and months of recovery. What was that like?
Did you have to work really hard or was it a breeze compared to dealing with CF lungs?
And what cool things have you been able to do since you got your transplant?

Sorry! These are all the questions swirling round my head!
 
B

BreathinSteven

Guest
I'm so proud of you, and happy for you, BeautifulSoul!!! This is a wonderful accomplishment -- I know that for any of us, it can be a weird combination of so many things including compliance, good luck and other factors -- but each of us who live beyond 3-5 years are helping, and developing statistics and routines for the people who follow us! That's always a good thing... You keep going! Love, Steve
 

piggylu

New member
CONGRATS!!!!! That is awesome!! So, was it an amazing instant feeling once you came out of surgery? What was it like?
 

LittleLab4CF

Super Moderator
I've wondered how you've been. We need to hear about the success stories, over and over to adequately appreciate the gift to you and the gift of having you as proof that a quality life is possible.

Stay well and trust that the world is a little richer having such a Beautiful Soul in our midst.

LL

Stay well,

LL
 

beautifulsoul

Super Moderator
I would feel absolutely terrible if I abandoned this thread :( I apologize to the members that have unanswered questions! I'll answer them now. Better late than never.

First of all, Pamelajet- How is your grandson? Is he currently waiting for a transplant?? Thinking of you! *hugs*

Cbegley- I didn't have any issues with Pneumonia post tx. To prevent this from happening right after tx you are required to move around. You may not stay in bed. You have to stay sitting up in a chair at all times and walk the hallways. Also, wear a mask and wash hands frequently!!

Daniela.l -I will check out your blog! I'm currently in the process of starting a crafting blog. Will post the link once I have some content posted.

Piggylu -
The feeling of greatness and breathily freely unfortunately is not "instant" My MIND thought I still needed oxygen when I didn't. It was a little scary. Still felt like I could not breathe even though I COULD! My chest was extremely "tight" from the surgeon breaking the ribs and tying them back together with wire. All these feelings eventually went away after a few weeks! It's worth it!!

Kyeev -
How sick were you? Very. Transplant means you will die without one. Was it your lung function or constant infections that pushed you towards transplant? Constant infections caused lung function to decrease significantly over a period of 4 years. At what stage did the doctors talk about transplant? Transplant talk was when lung functions were noticeably decreasing at 30% and oxygen became a necessity. Did you make it to transplant okay or were there any "near misses" on the way? I had one very near miss in the hospital a few years before transplant. The doctors had a meeting with my family. Lots of tears. And then, what it was like waking up with new lungs? Waking up on a vent is scary but they try their best to keep you sedated until you are off the vent which should be a very short time. A day or two after surgery. Did you have to work really hard or was it a breeze compared to dealing with CF lungs? You HAVE to walk the hallways everyday and exercise when you go home and Must do breathing exercises It's essential in recovery. Honestly I hated it. IN the hospital I was in pain with tubes coming out everywhere but I had to do it. It was worth every second of it. And what cool things have you been able to do since you got your transplant? Since My transplant I've done tons of amazing things! I went to Gatlinburg TN and white water rafted, I went to my high school proms, graduated, Celebrated 21st Birthday, Met my boyfriend online, just got married in Florida, went to disney world for our honeymoon. I'm so blessed and will be forever grateful for my donor and this gift of life. (L)(L)
I just got married on May 9th. I'll post pictures in a different thread. :)
 
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