So, in a little over a month I am scheduled to have my bone marrow transplanted. It sounds daunting but according to my nurse practitioner it will be rather anti-climactic. Apparently, I will receive the bone marrow harvested from my donor in the same manner I would receive a blood transfusion: hang the bags, hook them up to the pump, plug the line out of the pump into my Hickman Line, and then lie back and relax. I expect it might not be quite as easy to relax during the transplant as a typical transfusion but still, my job during this transaction between my donor and me is relatively easy. My donor, on the other hand, has a much more difficult task.
It amazes me that there is someone out there somewhere in the world who is not just a perfect match for me, but who is also willing to follow through with the donation. I have no idea where my donor lives or how far he or she has to travel for the procedure–he or she could live halfway around the world for all I know. Fortunately for the both of us, my hospital will cover the travel expenses and my insurance will cover the costs of the medical procedures; but still, what a disruption to life he or she is willing to make on my behalf, especially since my donor knows nothing about me, other than my life depends on his or her marrow. Likewise, I know nothing about my donor, other than he or she is truly generous and caring.
I am told that a year or so after my procedure I will be allowed to make contact with my donor, provided my donor wants to make contact with me. I will have to make that decision when the time comes. Right now I appreciate the anonymity of the process. It enables me to focus on preparing myself prior to the procedure and healing myself afterward without having to feel obligated to establishing and maintaining a relationship with my donor at the same time. Even to me this seems completely selfish, but it is how I feel.
Besides, how does one thank someone for such grand generosity anyway? Right now the only way I can think of is by simply saying thank you and trying to live the best life after the transplant as possible. We will have to wait and see if I feel differently a year from now.
You can thank them by being as good a person as someone who would donate their bone marrow to a complete stranger. Which, if I remember correctly, you are just such a person. Good luck.
Thanks Levi, though I think I got some work to do after the transplant to match the deed of the donor.
“It enables me to focus on preparing myself prior to the procedure and healing myself afterward without having to feel obligated to establishing and maintaining a relationship with my donor at the same time. Even to me this seems completely selfish, but it is how I feel.”
Good! Taking care of yourself first and foremost is not selfish at all, it is priority. <3 you!
Thanks for the encouragement Kiriko. Love ya!
After reading this, I am glad it wasn’t one of us. It will make is easier for you to focus on getting better. I will be forever thankful to your donor for the rest of my life. Maybe, one day I can return the favor on your behalf.
Hope you are feeling better and getting stronger for this procedure.
The dynamics would be completely different if one of you three were a donor.
Feeling pretty good…getting stronger.
Thanks Kim.
Love kurt
Kurt: It sounds like you have a really healthy perspective on this whole situation. You are an inspiration to all of us who read these posts. Thank you for your time and effort to keep up all up to date. I know that I appreciate it very much. I can’t ever imagine you living a life NOT worthy of the donation, so I think you can pretty much go on living life and being thankful for another day and you will be covered! Keeping you, your family, and your donor in my prayers.
Thanks Jill.
I really appreciate your incredible support throughout this whole endeavor.
I have been reading your blog, it really is enlightening. I have the same well wishes as everyone. I had no clue about the donor stuff. It really is an amazing thing. Makes me want to get on a list to donate as well. Anyway, hope all goes smooth and you can start growing the gray mane back.
Thanks Steve. I agree..the donor program is really amazing. And it’s still a relatively young program.
The gray (white?) mane is trying to grow back in uncoordinated patches. It looks rather ridiculous so I’ll keep it shaved down until it gets its act together.
Hi Kurt,
actually it might be that the donor, too, can donate in the same manner as a plasmapheresis transfusion; it depends on what kind of stem cells they need and how much. Most of the donations are now made this way. I don’t know if this will be your case and I know you probably know all this. I just think lots of people are afraid to become donors because they think it might somehow hurt them. So, even if I would not care much not to be able to seat down for a week or two if this could help someone, I thought it might encourage someone else to become donor knowing that it might be as easy as a blood transfusion!
Love ya,
Barbara
Hi Barbara. Thanks for providing the alternatives to bone marrow donation. My transplant will be from an actual bone marrow harvest…my hospital believes this is the method that provides the best and enduring results. Of course, in the end, it is up to the donor as to what method is best for her/him.
Thanks again!
Love kurt
Kurt!
So thrilled you have a donor. . .hope you are still feeling well (relative to all you’re going through). Miss seeing and talking to you – just know you are always in our thoughts.
Rob
Thanks brother. Miss you too.
Kurt – we are thrilled you have a donor and everything is looking good for the transplant. Your donor is truly a selfless person and I would like to think there are many such people in this world. I have no doubt that you would do the same thing for a complete stranger. We will keep you and your family in our prayers!
Melanie and Wilbur
Melanie, it’s great to hear from you. Thanks so much for the encouragement and prayers. Please give my best to your wonderful family. -kurt
Kurt,
Friday afternoon – used to chatting it up with you on the phone or via IM. Miss that every day! Just so you know, in your honor every Thursday I tell everyone S.H.I.T (So Happy It’s Thursday) and “Burp” my way into the Varen GAIM room. We miss you and hope you’re feeling alright – please let us know if we can help in anyway.
Rob
Thanks for the laugh!
Kurt:
There is nothing wrong with being selfish right now. We all tend to lose site of our priorities somewhere down the road, whether it be for our children our spouse, work, etc. Numero Uno should always be first and foremost yourself….especially in these situations. Keep up the fight. And I agree with Jill, you are worthy of this donation and I’m sure after the rough times are over, will live life to it’s fullest. You and your family deserve it.
Thanks for the encouragement Kristen!
Kurt, you are truly inspiring. I am really praying for you!
Which reminds me to remind all of my friends and Kurt’s friend to consider being a part of the Bone Marrow registry. It was very easy and I have been on it for years. I could only be so lucky to be able to help someone out! See the link:
http://www.marrow.org/
Maybe you can save a life! If you are lucky… Julie Sayre Senita 🙂
Kurt:
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.
Hello 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.
Hi 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
Hi Christina,
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