Blood and Marrow Donation Info

13 years ago I helped plan a blood drive

14 years ago I became a blood donor

3 years ago I joined the bone marrow donor registry

0…The number of times I thought a loved one would need blood or marrow donation

6…The number of units of blood Daniel received in the hospital

I never imaged my loved ones would need a blood donation or would be facing a transplant. I joined the registry and donate blood because there is a need and I wanted to help. Daniel and I have been overwhelmed by people who have offered to help him by donating. He asked me to right this post about how donations work.

If Daniel were to need another transfusion they will pull it from the blood bank. I’ll be signing up for the February Blood Drive at Georgia College. Daniel may not get my specific donation but someone in need will. If Daniel needs another transfusion they will pull from the bank because it has already been tested and is ready for use.

After the holidays the blood bank is low so if you want to donate please go to http://www.redcrossblood.org/. Information about eligibility and a link to finding a blood drive are available on the site.

In terms of bone marrow donations, you can’t be checked to see if you are a match to Daniel. There are a lot of factors that determine a “best match”. The likelihood of a full blooded sibling being a best match is 25%. When people need a bone marrow transplant they are typed and then run through the registry to find the best matches. It take a couple hours to find a matches and then additional testing is done.

To be a marrow donor you can sign up at https://bethematch.org/. We ask that you look through all the material before joining. They need donors 18-44. When you sign up you are offering to donate your bone marrow to anyone in the world. If you sign up they will send you the packet which includes a cheek swab. It takes about 10 minutes to fill everything out.

Not everyone can donate blood or join the bone marrow registry. There are times my iron is too low to donate at a blood drive and I have to try next time. The Be The Match registry has a lot of restrictions. We wanted to provide all the information since we have had so many people ask.

Please continue to pray for Daniel. The transfusion has helped him feel so much better than before but he is still anemic. He has been truly inspiring through all of this. He has been blessed with incredible doctors and nurses who are supportive and informative. The Lord has blessed us abundantly!

 

One week in

Well, it has been a little over a week since I heard the earth shattering words… and I still don’t think it has fully sunk in yet. They gave me a weekend pass, but I had to go back up to Atlanta on Tuesday for more labs. I also had a discussion with Dr. Szabo, who referred me to Dr. Khoury at the main Emory campus to develop the overall treatment plan.

I had a meeting with Dr. Khoury on Friday. For now, he wants to focus on hormone injections to stimulate red cell growth. Eventually, I will need a bone marrow transplant, but for now, the probability of serious complications from that procedure is greater than the MDS turning into leukemia.

I’ll still receive transfusions as needed, and eventually Dacogen may be on the table as a possibility as well. But for now, the main goal is to get my weight under control to make the marrow transplant less risky when it is needed. So, this blog will also be covering my weightloss journey.

The Diagnosis

I had been feeling “off” for a little over a year. I wrote it up to being over weight, and the occasional blood sugar drop. I was going to the doctor for regular checkups, but nothing turned up. There was the issue of not ever being able to do blood work.  Because neither the nurse nor the PA could ever get a good stick on me, it was always written up as something that would be done next time.

This past summer, I changed doctors. The new practice had on-site labs, and dedicated phlebotomists. They did the long overdue blood work, and there were some abnormalities that indicated I was slightly anemic. At the time, it wasn’t that big of a deal, but the new doc was through. He sent me to a gastroenterologist for a full workup to look for internal bleeds. After a colonoscopy, endoscopy, and capsule endoscopy, nothing turned up.

After the clean GI exams, the next stop was a hematologist. More blood tests were done, with the only result being a decreasing hemoglobin. Next was a bone marrow biopsy, which showed no signs of any issues, other than it having an extremely low density and that it was not producing red blood cells. Finally, I was referred to specialists at Emory Healthcare.

I had my initial appointment there with Dr. Szabo and did a ton of blood work. After the holidays, I was also scheduled for a CT scan to check my liver. This past Tuesday,  I went for the results. While the report from the scan was good, the results from the blood work was not. I had gone from slightly anemic during the summer to severely anemic in December. In fact, it was low enough that they walked me from the appointment directly to hospital admitting.

Over the course of four days, I was given six units of blood, which brought my hemoglobin back to acceptable levels. They had also pulled more blood for labs than I can possibly count and did another, and more extensive bone marrow biopsy, we had an answer as to what was causing everything.

Dr. Szabo and Dr. Bodo gave me a diagnosis of Myelodysplastic Syndrome, which is basically unheard of in someone my age. This blog will chronicle my journey through this process, and maybe connect with other people who are going through a journey of their own.