No, I had a bone marrow transplant several years ago. As a result, I contracted GVHD in my lungs and eyes. Here is a post discussing the lung gvhd: http://bojiki.com/2010/12/18/lung-gvhd-by-any-other-name/

Yes, I had major problems with my eyes. Some of it (cataracts) was due to the high doses of prednisone I was on to manage the gvhd, and the rest of it (no tears and major scarring) was due to the gvhd. I’ve since had the cataracts removed and now wear special lenses that cover most of the eye. Here is post discussing how my eyes were: http://bojiki.com/2011/09/04/no-sense-whatsoever/

Yes I have a lot of love and support. Plus, writing about my situation here and communicating with others who have similar experiences has been and continues to be a wonderful, therapeutic.

Keep us posted on how things are going for you. A lot of transplant patients stop by this blog so your info may be able to help others.

Thanks Christina and forever remain happy-go-lucky. And, likewise, you can contact me directly via the contact page.

Kurt

I didn’t notice the other responses where from so long ago. I just ran across your story on The Transplant Awareness Daily (http://paper.li/angelcove/transplant-awareness?utm_source=subscription&utm_medium=email&utm_campaign=paper_sub) this morning and so assumed it was current info.

Are you saying you will be needing another bone marrow transplant on top of needing a lung transplant at some point? If you don’t mind my asking, are the complications with your eyes affecting your vision much?

There is a website you may have heard of: http://www.patientslikeme.com but if not you may or may not find it useful. I have been on it a few times. Do you have a support network of any kind? I found one once, several years after my first transplant, and it (the kidney) was failing so I was becoming jaded and by then I was no longer happy-go-lucky like they were acting so that didn’t last! Personally I think it would be good (for me, at least, I can’t say for you) to talk to someone in the same boat.

Feel free to ask me any questions you would like. While we don’t share the same organ transplant experience, it is still a transplant, so we do have some things in common, I’m sure. My email address is cgsavvie@gmail.com if you would like to contact me off of your site. (Since I probably won’t remember to check back here as often as I check my email!)

Best,
Christina

Thank you for your kind words of encouragement. Actually, the transplant took place nearly three years ago now. Coincidentally, just yesterday my wife and I made the decisioni to release my name to my donor to see if he or she is willing to make contact.

I have always wanted to contact my donor since the transplant, but, as I’ve tried to explain in subsequent posts, I’ve had some pretty serious graft versus host disease complications, especially in my lungs and eyes, and for a while there we were too sure of the future. As a result, I really didn’t feel comfortable contacting my donor in that condition and laying something like that on him/her. But, luckily, things have been going pretty good lately so we feel it is now time to make the outreach. We’ll see if the donor feels likewise in a couple months.

It’s great to hear your story and I’d like to hear even more, actually. Because I have chronic GVHD in the lungs there will be a point that they will give way completely and I hope I will be able to receive another transplant, so it’s good to know there are multiple transplant patients out there who are willing to share their lessons and examples.

Thank you again, Christina, and best of luck to you.

Congratulations on your upcoming transplant! Although I don’t know the details behind any of it, I am sure that it will be life-changing in so many ways. I myself am a 3-time kidney transplant recipient, and I love reading these encouraging stories of selfless people giving LIFE to others.

Reading your words: “…without having to feel obligated to
establishing and maintaining a relationship with my donor at the same
time…” made me feel better about my own thoughts when a friend of a friend offered his kidney (which didn’t end up working out). I was so worn out from the illness that the thought of working on a new and probably long-term relationship was wearing, as well. NOT that I wouldn’t have been just as unfathomably grateful to him as I am to my unknown donor (which I am still hoping to meet, as it turns out). I just completely relate to you on this point and want you to know that you showed me it is normal! Thanks for that.

And thank you for sharing your story. Good luck with everything.