Share Your MDS Story

I wanted to write this so that people know there is a cure and with the cure there is hope for people who suffer from MDS.

In January 2024 at the age of 67 I was diagnosed with MDS. My hemoglobin was 8.2, white blood cell was 2.2, and platelets were at 83. Up until that point I was a very healthy and active person. I started noticing fatigue during exercise but didn’t think much of it.

I was told I had a year to live unless I received a bone marrow transplant. More tests indicated I was a high risk with mortality being an issue even with a transplant. I knew the survivorship numbers were not good, but the doctors wouldn’t even talk about it. They just said there is a cure and to be hopeful.

At this point I started my first round of chemo and started getting transfusions of blood and platelets while the hospital started their search for a donor. I was still feeling fine, just a little fatigue.

They were able to quickly find a donor and by May I was told to check into the hospital to get ready for a bone marrow transplant. I later found out that my donor was from Ohio and had been waiting for years to find a match. They put him through the tests and then flew him to Milwaukee to extract his stem cells. Then they expedited his cells to New York as I was getting prepared for them. Unfortunately, I had a little congestion the day I checked into the hospital. I tested positive for a very minor virus called a paravirus. The doctor called off the procedure and said I was fortunate they tested for the virus as this could have been fatal to continue.

I went back home and started another round of chemo as I waited for the virus to leave my system. This was a very upsetting time as we were very concerned I would get sick again and we knew the doctor was trying to expedite everything for a reason.  I was readmitted back to the hospital in late June for a July 5th transplant. While in the hospital our son set up a nice stereo system and Roku on the TV. My room was decorated with family photos and even had a digital picture frame setup. My wife stayed with me everyday, and my son would stop by and watch the Met’s games. I had a great support system!

At this point I received high doses of chemo to kill off all the cancerous cells to get ready for the new ones. I received my donor’s cells through an IV and was still feeling fine and getting up often to walk. It took a few days before I started getting sick and losing my hair. This was not a good time, but I never got any serious side effects. I was ready after reading the horror stories other patients want through, but I never felt I was that bad. Yes, I did get nausea, had diarrhea and lost 20 pounds, but I was expecting worse.

I was told during my hospital stay to make sure I got up everyday and try to walk laps around the corridor. I found out this is very important because you will become very weak.

Two weeks after my transplant I started feeling a little better and the blood work indicated that my donor’s cells were starting to take over. In three weeks, the doctor said I could leave the hospital 1 week early. I checked into Hope Lodge which is an American Cancer facility in Manhattan. It is a wonderful lodge and is completely free!

I was scheduled to stay at Hope lodge for 2 months as I went back to the hospital 3 times a week for testing. During this time, I had some graft host disease issues and urinary infections, but nothing was too serious. Our son’s office was close by, and he stopped by every night with dinner. Our other son lives in Massachusetts and came by weekly. He even brought our granddaughter and daughter-in-law a couple times.

After 1 month I was told that I was doing so well that I could go home early if I came back weekly for testing. I was so happy to be home again, but I kept thinking that I am just having too much luck. The recovery wasn’t supposed to be this easy. When will something happen that will put me back in the hospital?

I did well at home but had to mask up and stay away from crowds. My strength slowly was coming back, and I was able to take long walks. I caught colds more frequently but nothing serious. I also occasionally get skin rashes. It could be a graft/host issue but again, nothing serious

I had to get all my childhood immunizations again. This is a long process, and I must wait up to 2 years for the MMR.

The biopsy on my 1-year anniversary showed no cancer and that I should be completely cured! I still must get tested but it is down to every other month now and nothing ever comes up. There is always a slight chance something will show up but why even think about that. I have gone from thinking that I may die to believing that I’m now back to a normal life.

I finally got to meet my donor a couple months ago. I wanted to make sure he knew how thankful I am for everything he went through. He was wondering if he would ever be called upon since it was 8 years since he was tested. He acted like it was nothing and was more than happy to be helpful. The world needs more wonderful people like him. It must feel so good to know you saved someone’s life.

I am so thankful for life and everybody who helped save mine. Not only the stem cell donor but everybody who donates blood and platelets. I must have gone through at least 30 pints throughout my whole ordeal.

Whether you practice a religion or not it does help to have to have something to fall back on. If you are a Christian memorize the Lord’s prayer and the 23rd Psalm. It’s good to know you are never really alone and there is someone always there for you.

This also helps bring friends and family together. My family pulled together and helped every day. Our daughter-in-law, who is a nurse practitioner did all the research and helped prepare me. She was even on our doctor’s call list. My son in Massachusetts came down weekly and was always offering written and verbal encouragement. My other son in New York City came by every day. And my wife was with me at the hospital every day and stayed with me at Hope Lodge. This really makes you realize how much you are loved.

I do hope that this helps you if you do have this disease. I never thought I would come out of this so well. I thought if I did survive I would have some lingering effects that would hurt my quality of life. Now my life is even better! I cherish every day. There are no bad days for survivors.