My Bout With MDS

On November 24, 2004 I was diagnosed with Myelodysplasia or Myelodysplastic Syndrome (MDS). I had a bone marrow transplant on April 27, 2005 to survive. This is my story. I urge you to become a potential bone marrow donor. To join, please click here: Be The Match



Summer, 2004  During the summer, I felt tired more than normal. It was especially noticeable in July while on RAGBRAI, an annual bike ride across Iowa that my sons Ben and Andy have been on with me. While I never ride even half of the distance, I was tired after only riding 20 miles in a day. The day I rode 40 miles I was extremely tired and found walking difficult afterwards. Around the house, I used Andy to do all my heavy lifting and called on him to make numerous trips from the dock to the house so I would not have to. It wasn't that I couldn't make the trip, but I would get very winded doing so.


September 14-18, 2004  Deb and I drove the camper to the Black Hills region for a little getaway. During the trip, I limited my activity because of extreme exhaustion. We planned on doing a little hiking, but we never really did much because I never felt up to it. Two incidents stand out. First, the walk from the camper to the observation area at Mount Rushmore was really tough for me. It was only a slight walk up hill of about 300 yards, but by the time I reached the end, I was looking for some place to sit or a handrail to grab. The second was while I was bringing a wheel barrel full of campfire wood to the campsite, probably about 75 yards. I was so tired about half way that I had to stop and rest. I was starting to really feel that I was really out of shape.


September 21, 2004  We were home from the Black Hills. I woke up in the morning feeling more tired than normal. As I showered, my arms ached from lifting them to shampoo my hair. Every movement seemed strained. As the shower ended, I was starting to feel faint. I got out of the shower and dried off. It almost hurt to raise my arms to dry my face and hair. Suddenly, I needed to sit down. I managed to make it to the side of the tub and just sat, trying not to pass out. Just then, Deb entered the bathroom and immediately knew something was wrong. She asked what was wrong, but I really didn't know. I asked for a glass of water and my hands were shaking. The cold water felt good, but I was totally drained. Deb said the words that will ring in my head forever, "You are going to the doctor". I agreed immediately. She helped me to the bed were I rested for ten minutes before I had the strength to get dressed. I called my cholesterol doctor's office as soon as I was able.

Luckily, I was able to get to see the doctor at 12:30pm. I told the doctor how tired I was and he checked my vital signs. Blood pressure was normal and other signs ok, but he ordered blood tests at the clinic down the hall. The doctor told me he would call in the morning with the results of the tests. I went home and took it very easy the rest of the day.


September 22, 2004  My doctor called at 8:15am. He told me that my hemoglobin (red blood cell) count was extremely low, meaning I was anemic. In addition, my white blood count was very low. He said I must see a hematologist (doctor specializing in blood) that very day. He was already working on setting up an appointment for me and would call as soon he knew what time I could get in. He called back within the hour and told me I had an appointment at 3:30.

The hematologist explained that my hemoglobin level was 6.2 grams. In a normal male my age the range is 14-17 grams. He said that my white blood count was very low too. This would make me very susceptible to infections and disease. In a thorough exam, the doctor wondered if I had any indications of bleeding. I did not. He told me I needed a blood transfusion. This was my first indication that I was really sick. I was frightened, but I desperately wanted to feel better. He assured me that the transfusion would make me feel better. The doctor also ordered many blood tests to help in his diagnosis of the cause. He also explained that I would need a bone marrow biopsy, explaining to me for the first time that all blood is produced in the bone marrow. The bone marrow biopsy did not have a ounce of fun in the description and coupled with a blood transfusion and a chest x-ray, my plans for the next day had Deb and I quite worried.


September 23, 2004  I reported to Fairview Southdale hospital at 7:30am. They took another blood sample in order to match with a donor's blood and told me that my hemoglobin level from a test at the hematologist's office the day before was 5.8 grams. (I found out later this would be the equivalent to receiving a gunshot shot in the leg and losing 3 pints of blood of the 5 pints in your body. Virtually anyone in this shape would already be in shock. I was still walking around!) While they found some matching blood, they took me to receive a bone marrow biopsy. I was shaking with nervousness. The technicians were unsure whether I was supposed to receive a sedative for the procedure or just a local anesthetic like Novocain. Well, since I have always enjoyed being aware while having medical procedures (knee surgery, shoulder surgery, lasik eye surgery), I chose the local anesthetic.

The procedure goes like this:  they numb up the area, then make a very small cut the size of pencil lead in skin just outside the pelvic bone (right above my bottom). The doctor then uses a small T-handled drill of sorts to drill through the pelvic bone and into the marrow. This is where all the blood producing action takes place. Stem cells, the grandpa and grandmas of all blood cells, produce immature blood cells that will grow up to be one of three types of blood cells - red, white and platelets. The red blood cells pick up oxygen in the lungs and carry it to all parts of the body, then return carbon dioxide to the lungs to be exhaled. White blood cells fight off disease and infections. Platelets have the coolest job - they are summoned to clot the blood whenever bleeding happens. Anyway, the doctor removes a sample of liquid from the marrow and a solid, kind of spongy sample about one and half inches long and as big around as the pencil lead hole into my pelvic bone. Many people say that this procedure is very painful. I described the procedure as something "I would not stand in line for", but not too painful. These samples are the equivalent of a hard drive in a PC. They contain an incredible amount of information about your blood counts, blood production and DNA.

Next it was on to a chest x-ray. It proved to be totally normal. Then, back for my blood transfusion of three units. I had no idea what to expect, but it is just an IV with blood pumping in. The frustrating part is just the amount of time it takes to "suck up" a unit of blood. I am able to take a unit in about an hour and twenty minutes. Other hospitals (including Mayo) slow the "spigot" to flow only one unit every two hours. So, I spent over four hours getting my new blood. Then, it was home to rest again. I must say, the staff at Fairview Southdale are very kind. I have spent a lot of time in the IV ward and they are funny, kind and caring.


September 24, 2004  Oh my goodness, what difference a little blood makes! It was amazing. It normally takes 12-18 hours for someone to feel the effects of a transfusion and I woke up with energy I had not felt in months. It was awesome. I was taking stairs two at a time again. But, the lingering diagnosis was still troubling. I went back to my hematologist's office for a vitamin B12 shot. It turns out that one of my blood tests tested positive for an antibody in my stomach that attacks a substance called "intrinsic factor" that everyone has in their stomach to help digest B12. The intrinsic factor attaches itself to B12 and flows to the intestines where it can be digested. In my case (and millions of other people), I have this strange antibody that attacks the intrinsic factor. Therefore, I cannot digest vitamin B12 and will need to receive B12 shots (usually monthly) for the rest of my life.  B12 is an essential vitamin that helps trigger those stem cells to produce blood cells.


September 30, 2004  Deb and I visited with my hematologist. He again explained that I was anemic and that my white blood count was still very low. He explained that transfusions are usually just red blood cells. This is because white blood cells only have a life about 24 hours, platelets only about 2 weeks, but red blood cells live up to 120 days. So, transfusions of red cells are the most productive and last longer. He told me that I should not travel, especially on an airplane. I should not be around large groups and refrain from being around any sick, as I am susceptible to become sick very easily. He explained that if I were to have a fever of 100.5F or higher for six or more hours, I should check into the hospital. This was tough news to take. Deb and I were due to go to Florida with friends on October 4th.

My doctor started to explain that all my blood tests were normal (other than blood counts). He also gave us great news about the bone marrow biopsy. I do not have leukemia or any type of cancer of the bones. But, either I must be losing blood or not producing it correctly. Since we cannot find a source of losing blood, his suspicions lead him to talk about blood production disorders. This was also the first time he mentioned the word Myelodysplasia (MDS). He said that my symptoms look like MDS, but the bone marrow biopsy did not show signs of it. He ordered more blood tests to look for other possibilities including lead poisoning, or exposure to benzene. So far, we had no diagnosis, only ruling things out.


October 4, 2004  Deb and I met with my hematologist. Further tests results were in from my bone marrow biopsy. They continued to be negative of any major problems and gave no indication as to the cause of my blood problems. In addition, the B12 shots have not made any improvement in blood production, which further indicates something wrong with blood production. But it can sometimes take several weeks for B12 to "kick in". We continued to talk about monitoring the situation and be watchful of any changes in my condition.


October 7, 2004  Another meeting with hematologist. My hemoglobin continues to fall and still no positive signs of any diagnosis. I also received another B12 shot. We talked a little about a referral to Mayo or the University of Minnesota.


October 14, 2004  I am beginning to feel quite tired again. Blood tests reveal my hemoglobin has now fallen to a level low enough to consider another transfusion. After receiving a B12 shot, I went to the hospital for my second transfusion, but just two units this time. After most the day at the hospital I still have the energy to see a play at the Guthrie with Deb.


October 21, 2004  Meet with doctor. He gives me another exam and we talk about possible outcomes. He suggests a CT scan to determine we are not missing some internal problem. Received another B12 shot.


October 24, 2004  Receive CT scan at hospital.


November 3, 2004  Deb and I meet with doctor. My hemoglobin continues to fall and white blood remains very low. Platelets, as usual, are on the low end of normal. Still no diagnosis. My CT scan does not indicate any answers towards my blood condition. We talked a lot more about possible diseases and what could happen. The prognosis on my current condition concerns the doctor. He considers another bone marrow biopsy to see if there are changes from the biopsy in September. We also discuss a referral to Mayo. We decide on a referral to Mayo Clinic and they make an appointment for November 17th.


November 8, 2004  Over the weekend I feel the familiar symptoms of a urinary tract infection. I visit the doctor's office for urinalysis. They confirm a urinary tract infection and I am put on antibiotics for a week.


November 16, 2004  Another blood test and B12 shot. I pick my doctor's records and records of CT scan and bone marrow biopsy for Mayo.  My hemoglobin is very low, but we decide I should go to Mayo with low hemoglobin versus going just having a transfusion.


November 17, 2004  Deb and I see my first hematologist at Mayo for the beginning of a three day visit. He reviews all the tests from my local hematologist, but explains that it is "The Mayo Way" to re-test everything. So, I am off to the lab for a multitude of blood tests. We see the doctor later in the afternoon to review the results. There is no new diagnosis from what we already knew. The doctor explains that although I did not have MDS by the results of my first biopsy, it is still a possibility that a new bone marrow biopsy would now indicate the presence of MDS. In the meantime, my hemoglobin is so low that he schedules a transfusion for the next day.


November 18, 2004  My case at Mayo is turned over to a second hematologist as my first doctor is going on an extended vacation. He goes through all the notes and comes to the same conclusion as the other hematologists. It is time to perform another bone marrow biopsy to look for any changes. It is scheduled for the next day. In the meantime, I receive my first transfusion at Mayo. And, according to "The Mayo Way", they take two hours to transfuse each unit of blood - four hours in the chair.


November 19, 2004  I received a bone marrow biopsy at Mayo. The technicians are as skilled as those at Fairview Southdale, so again the procedure is not very painful. Deb and I drive home to begin our wait on pins and needles to hear the results.


© Dan McGlynn