My Bout With MDS

January 14, 2005 I continue to feel the same. I sleep more than I want to (rarely awake before 8:30am) and my energy is very quickly depleted upon the slightest activity. I am exhausted after running up the stairs, taking out the garbage or even getting dressed. But, I recover from those bouts very quickly, in about one minute or so. My doctor agrees that this is most likely caused by lack of oxygen to my muscles, which is caused by my lowered red blood cell counts. So, when I exert myself, it just takes longer for my fewer red blood cells to pick up new oxygen from my lungs and deliver it to my muscles. This causes me to breathe hard and feel tired quickly.


The search for a donor is creeping along. I found out that Mayo asks for five potential donors to be contacted at a time. The first five have been contacted and already two of the potential donors dropped out of the race. They will not tell me why these donors have asked not to participate, but some examples are: donor just got pregnant, got new job, just moved, or is very sick. Of the three remaining donors, one of them is already an 8 out of 10 match. The other two are 6 out of 10 matches. Since they all have to be tested for all 10 attributes, they are being asked to send a blood sample to Mayo. One of the potential donors will have their blood drawn on January 26th. That means their blood will arrive at Mayo on the 27th and will begin typing on the 28th. It will take about three days for results, so I should know if this one person is a perfect match on February 2nd.


The other two donors may get blood drawn sooner or later than the first donor.

In addition, I asked my Mayo coordinator today if they could please add two more potential donors to the list so that my chances for a perfect match improve faster. My coordinator will put in the request today. At this rate of process, my coordinator predicts the earliest date for my transplant would be late March.


My coordinator also indicated that if these three donors do not produce a perfect match, that there are quite a few 6 of 10 matches to be pursued. This, of course, is about my best news yet!


I also asked my Mayo doctor if I can travel to Florida next month (see Jan 12 note). My transfusion timing indicates I should have a transfusion about February 10th and I am guessing that I should be able to travel on February 11th. He said that if I have my blood levels checked before leaving, go soon after a transfusion and have an exit strategy (Lee County Hospital or Mayo Clinic Jacksonville or fly home quickly), that he sees no reason I should not be able to go. He also agreed with my coordinator that I will most likely not have a donor by February 20th (assuming I am in Florida for a week).

I have already confirmed that these dates will work with my father and step-mom. So, with a little luck and stable blood counts, Deb and I will be able to take one trip before I have my transplant! Hooray! 


January 19, 2005 Went to the doctor for labs (blood tests) today. My hemoglobin level was 6.7, which is a little lower than normal for my three week checkups. So, instead of the usually prescribed two units of blood, they ordered a transfusion of three units.


January 20, 2005 Went to Fairview Southdale for the transfusion of three units of blood. I was prepared to sit for a while. While there is no pain involved, just a simple I.V., it takes about an hour and a half to receive each unit of blood. So, I sat from 9:30 to 1:30 chatting with the nurses and, of course, reading my PC magazines. (During my transfusion in December I wrote the initial pages of this website). I celebrated my transfusion by meeting with six St. John's buddies for dinner and beer. After refusing to shake hands (germs, you know), all the others followed suit when the next person arrived. It was pretty funny. We laughed about old stories and new stories - each getting better with time. What a riot!


January 21, 2005 Superman. I woke up this morning with dynamite energy from my special three unit transfusion. It was the best I have felt in about four months in terms of energy. So, I put it to good use. I went out to lunch with my brother Mike and a former employee and then went to the boat show (during the snow storm) with my brother Tim and his son Patrick. Later, I picked up my daughter Kelly and we headed home in four wheel drive for some food and fun with Deb. It was a great day. I had so much fun that I totally forgot about being sick and forgot to call Mayo for my weekly donor update. I will have to call on Monday.


January 24, 2005 I called Mayo today for my donor update. It turns out that one of my donors went in earlier than expected to have their blood drawn. The person had their blood drawn on January 17th, the sample is already at Mayo, and I will know if they are a perfect match on Wednesday. And to top it off, this donor is already an 8 of 10 matched attributes. I am trying not to get my hopes up too high, but I am anxious to begin my transplant. Even if this is a perfect match my transplant will not begin until the beginning or mid-March. Mayo has also requested two additional donor be added to my search. So, there are four other potential donors. We do not have any more information on their status. More news Wednesday.


January 26, 2005 I called Mayo to check on my donor status. They confirmed that one potential donor's blood is in the lab, but they are still in the process of testing the attributes. They are certain I should be able to find out results tomorrow. Waiting, always waiting...


January 27, 2005 Great news! The very first potential donor to submit a blood sample is enough of a match to use. As I have stated before, we are looking for a perfect 10 - matching 10 of 10 attributes. This donor is an 8 of 10 match, but one of the mismatched attributes is the least important. So, it is more like an 8 of 9 match. According to my Mayo transplant coordinator, my doctor would most likely approve this donor, but it is more likely we will continue our pursuit of other donors, looking for a perfect 10 match. In other words, this donor is a great fall-back position in case no better matches are found. This is much better news than "no donors found".


February 2, 2005 I went to my Mpls. doctor today. My red blood counts are holding up ok, most likely because of my three unit transfusion two weeks ago. He scheduled me for blood count test and blood typing on the 9th so that I will be ready for a transfusion on the 10th in preparation for Deb and I to leave for Florida on the 11th. Yippee, we are on track for the trip!


One of the risks of multiple blood transfusions is that the body can build up an excess of iron. My iron level has been slowly rising and this week we discovered that I reached the threshold of needing to take action to reduce it. As with all things medical, they have a drug that I can take to reduce the iron level. It actually attaches itself to the excess iron and is flushed out the body. This drug works best when slowly injected into the body over a long period of about eight hours. So, this drug is administered thru a small pump I can wear on my waist. They will send a nurse to our home to show Deb and I how to hook it up and administer. My doctor said it is ok to begin treatments when we return from Florida.


My dad is working hard to make all the arrangements for the flights to Florida and back. Our friends the Kupper's will be joining us on the flight to Florida. They are going to their home there for the weekend. My dad and step-mother may be joining us on the return trip home.


February 4, 2005 I called Mayo today for a donor update. My coordinator is amazed at how many potential donors for me have deferred (are unavailable) for one reason or another. By my count, they have contacted eight potential donors and only three have been able to participate at this time. My coordinator told me that a large number of donors are in the military and are serving in Iraq. We have one donor scheduled to have blood sampled on the 9th. We should have results from Mayo about the 15th. We are still waiting for a response from the third donor. In addition, my coordinator will request a couple additional donors, but she cautioned that we may be running out of potential matching donors. On the bright side, she has confirmed with my Mayo doctor that he will use the 8 of 10 donor that has already been identified. Our goal is to find a perfect matched donor if possible, but at least to find a back up donor to one we have.


February 5, 2005 I got a little scare today. One of the symptoms of MDS for me is that my gums are very inflamed and bleed easily. My doctors believe this a side effect of my MDS that should go away when I recover from my blood transfusion. Today, the area around one of my teeth started bleeding - a lot. I noticed it and assumed it would stop in just a little while. It didn't. After an hour or so, I noticed a huge blood clot in my mouth and my gums were still bleeding. I decided to call my doctor and began flushing my mouth with ice cold water that Deb recommended. About the time the doctor on call reached me, the bleeding had stopped. If it happens again and I cannot stop the bleeding, I was told to go to the hospital. Just another fun attribute of my disease.


February 7, 2005 I called my Mayo doctor for a final check that he was still ok with my trip to Florida this Friday. I told him that my Mpls. doctor had prescribed the iron reducing medicine for me (see Feb. 2). I confirmed that he was ok with me beginning my treatments upon my return from Florida. I also told him about the bleeding gums situation. I told him I had a dentist appointment set for the next day and I was worried that my dentist may want to begin treating my gums. He told me to have my dentist call him if he recommended treatments, since he would prefer to wait until after my transplant. All in all, I got a blessing to go to Florida on Friday!


February 8, 2005 I went to my dentist fully expecting to hear bad news about the condition of my gums and hear my dentist recommend treatment of some kind. I was shocked to find out that my gums have actually IMPROVED since October and that my dentist was not recommending any treatments at this time. Yippee!


February 9, 2005 I went to the hospital for blood typing for my transfusion on Thursday morning. Everything is on track for our trip to Florida on Friday. To celebrate, Deb, Kelly and I went to the RV show downtown tonight to scope out the new campers. They are awesome and we are considering a small upgrade after my transplant.


Deb and I are really excited for the trip. It will be wonderful to see my dad and step-mom and spend some quality time with them. Since being diagnosed, I never dreamt that would happen this year! Some friends will hopefully join us for dinner on Saturday and my brother Tom called today and he may stop by to see us Sunday night until Monday when he returns to MN. In addition, we will be able to celebrate Valentine's Day on the beach. It should be wonderful!


I know it is stupid to announce on the internet that I will be out of town, but in case you were thinking of knocking off the house while we are gone, let it be known that someone will be staying at the house and that this person is trained in martial arts!


February 16, 2005 The flight to Florida was awesome. I don't suggest it to anyone. A flight on a private jet will spoil your thoughts about airline travel forever. It makes first class feel like traveling on a school bus! We boarded the plane and were in the sky in less than three minutes. The flight was totally smooth, much more so than any commercial flight.

It is great to spend so much quality time with my dad, step-mom and step-brother. I have been eating like a pig (grouper, grouper and more grouper) and relaxing a lot. The six-month anniversary of hurricane Charley was just a couple days ago. The devastation on Captiva is overwhelming. While some places, like my dad's, are back to normal, other places look like a bomb went off. And it gets worse as you reach the end of the island where my mom's places are. I meet with an insurance adjuster (our side) today. We expect to put up a considerable fight with the insurance companies.


My energy level is quite good since I had my transfusion just last Thursday. I am trying to stay away from mold down here so I stay well. We are looking forward to going out on my dad's boat on Saturday. And the weather? I won't even mention it is 80F and sunny.


February 18, 2005 I called Mayo today for a donor update. One more potential donor will have blood drawn on the 22nd. This means we should have test results about February 28th. They are still trying to reach two other potential donors.


February 20, 2005 We flew home today. My dad joined Deb and I since he needed to fly to MN for some business matters. But, in a surprise move, my brother Tom, his wife Toni and two kids joined us on the way home. We had a full plane with just seven McGlynn's on board. It was very fun! Our trip to FL was a great break from the winter in MN. We had some great food, lots of sun and many good times with family. The highlight had to be our boat ride to Boca Grande with 10 family members.


February 21, 2005 A nurse was supposed to come to our home today to begin my treatments of Desferal, an iron reduction medicine, to reduce the iron I have built up by having so many blood transfusions. But, there was a glitch in the testing procedures and it was rescheduled for Wednesday.


February 23, 2005 Shelly, a very nice nurse came to our home today to set me up for my infusions of Desferal, an iron reduction medicine. We first tested to see if I will have any reactions to the medication. So, Shelly started an IV of Desferal for one half hour. Everything went well, so Deb and I were trained how to infuse the Desferal on our own.


Since the drug only works when pumped into the body very slowly, we (Deb) has to inject a tube into my stomach as a "port" for the drug. The Desferal is then injected slowly into the fatty section of my stomach (lots of room for error here) over an eight-hour period. The system uses a small pump, which will run while I sleep. I need to repeat the process for five nights in a row and then I get two nights off before beginning again.


Deb had her first real hands-on test when she had to inject me with a needle, then pull it out leaving the infusion tube inside me. She was great! Although I was hoping she might put on a white dress and funny hat for the procedure, we both made it through just fine. I will be leaving the port in my stomach for three days at a time and then start with a fresh hook-up.


I am not sure how long I will have to use the Desferal. I have a feeling I will stay on it until I go to Mayo for my transfusion.


February 24, 2005 I got a wonderful surprise today! My son Andy's school, Boston College, is having a bone marrow drive next Monday. Andy has decided to participate - I am so proud! The reason that the school is having the drive is to hopefully find a bone marrow match for a nine year old boy, Elijah, fighting his third bout with leukemia - see his story here. I continue to urge you to sign up to be a potential donor. Your chances of being chosen are slim, but if you are, you may help save a life.


February 26, 2005 My experience with the Desferal has been fine. The biggest hassle is the fact that my stomach is wired to the pump. So, I have to be careful when I roll over in bed, which I enjoy doing frequently - oh well. It was nice this morning to take out my first tube for about 36 hours. Here is my hookup (click to enlarge):


February 27, 2005 Thank you to everyone for their comments in my Guest Book. I have heard from old friends, new friends, a host of relatives, and people I have worked with. I have heard from people that I talk to weekly and folks that I have lost track of and not heard from in decades. Your thoughts, prayers and inspiration are the fuel that will help me through my battle ahead. And by the way, if you have not left a message, do not feel you must. By just visiting my site and thinking about me you have sent me positive energy.


February 28, 2005 I confirmed my potential donor status today. Mayo has been working with four potential donors. One is the 8 of 10 attributes that I have mentioned before. We now have another 8 of 10 donor, but the mis-matched attributes are more critical than the first, so we would choose the first donor over this one. The third potential donor has declined to be involved at this time. The fourth potential donor has sent in a blood sample for testing and we will know results on Wednesday. This is my final potential match. Obviously, we are praying for a 9 of 10 or perfect 10 match on Wednesday.


By early next week, we should be setting a date for me to enter Mayo. They are currently booked into late April. So, most likely, I will be in Rochester for all of May, June and July. My Mayo doctor is out of town this week, but timing details of my treatment should be coming together very soon.


March 2, 2005 I found out today that my last potential donor in the donor database is a perfect match - a 10 of 10! Needless to say, I am overcome with emotion! Thank you all for your thoughts and prayers - they have been answered! I will find out my scheduling to go to Mayo early next week, but it will most likely be the end of April. We love you all! - Dan, Deb and Family.


Later - Wow, what a day. We have heard from many of our friends and family today. Everyone has been so supportive and happy for me. Meanwhile, my energy level has been very low this week. It was no surprise when I had my hemoglobin checked late today and it was very low. I saw my Mpls. doctor and he also congratulated me on finding a donor. I am scheduled to receive three units of red blood cells tomorrow morning. I really need it. I will sleep like a rock tonight.


March 5, 2005 I am feeling SO much better since I received the three units of blood on Thursday. I am able to climb stairs again without resting and help Deb around the house. Kelly, Deb and I had a fun day of shopping and errands and then Deb and I had dinner with friends. Deb and I are excited to confirm our Mayo start date early next week.


March 7, 2005 I received my tentative schedule for Mayo today. On April 1st, Deb and I will take possession of an apartment in Rochester. During my preparation, my donor will have their stem cells "harvested" for me. Mayo and the donor have both requested that the stem cells be harvested from the donor's bone marrow versus the blood system. Mayo would prefer this method for my individual case. And I am told that many donors reject the idea of the stem cell growth drug regiment and would rather have the stem cells harvested without the use of drugs.


March 9-13, 2005 On Wednesday I went to the doctor for usual blood tests, but was not feeling well. I was correct in my guess that had another urinary infection. This one has been a really rough. I am certain that my low white blood counts are not assisting my antibiotic prescription like they should. On Thursday, my temperature never went below 102F and peaked at 102.8F. My temperature did not drop below 100F until Saturday. I have lost 6 pounds (water weight) and I have not been able to do much of anything. I finally felt a little better today so that Amy, Ben and Lisa, and Kelly could visit. They are so fun to have around! I will touch base with my doctor tomorrow on my current condition.


March 14, 2005 I felt much better today and my temp finally lowered under 99F. I found the energy to keep a lunch appointment with my sister Molly. We had a wonderful lunch for over three hours. But, afterwards, as Deb, Molly and I were chatting back at our house, I felt very weak and ready to faint. I drank some cold water quickly and regained my senses. Deb and I then called my doctor's office and got an appointment for Tuesday morning.


March 15, 2005 Deb and I met with my doctor. After explaining all of my symptoms and having a blood test, it was determined that I most likely had more than a urinary infection. The antibiotic was working against whatever was ailing me. And that I needed a blood transfusion. This last bit of news was very disheartening. My recent transfusions have been lasting me 21 days. My blood level was already too low after just 12 days. Then, my doctor and nurses all agreed that being sick most likely decreases the lifespan of my blood. In people that are well, they just make more blood, but I cannot do that. A transfusion was scheduled for the next day. So, we went off to the hospital to have blood drawn to "type" it for blood selection for the next day. We walked into IV Therapy and ran into our good friends, Dick & Tracy Dauwalter. Dick had been sick for several weeks and was receiving a glucose IV. While we were there, Dick was admitted to the hospital. We promised to visit him the next day.


March 16, 2005 Deb and I reported to the hospital at 7:30am to begin my transfusion. Overnight, my doctor added a huge IV dosage of Desferal, my iron-lowering medication while I received my blood transfusion. This meant we would be at the hospital most of the day. Well, we managed to escape (got permission) to leave the department to visit Dick and Tracy (see below) upstairs. I had to bring my IV of Desferal with me. So, Dick, who was still receiving an IV and I had to pose for a camera phone picture of our dueling IVs.


March 20, 2005 I have recovered nicely from the antibiotics and my transfusion. I am back to my "normal" self. Deb and I are marching through the list of things to get done prior to moving to Rochester. 18 days until exams.


March 29, 2005 My health has been very stable lately, so I did not have much to say. I continue to be a little tired, but I feel fine. My iron reduction medication seems to be working well and Deb has been great with setting up the injections and inserting the injection tubes. Having Andy and Megan home for Easter was a joy. We had the whole family together for Easter day - tons of fun. Deb and I are now scrambling with preparations to move to Rochester on


April 2, 2005 The move went very smooth. Deb and Amy's boyfriend Russ wouldn't let me lift thing. As it was, I was still exhausted by the end of the day. We are living about one block from the hospital and are getting to know our way around.

March 31 Well, at least I thought my health was stable. A lab check yesterday revealed that my hemoglobin level was 6.6, low enough for another transfusion. This was quite a setback, as my last two transfusions are only 15 days apart, instead of the usual 21 days.


In addition, my platelet (the clotting part of blood) count which had always been on the low side of normal, was in the critically low range. This means that a skin cut may be very difficult to stop from bleeding. And on top of that, my white blood count was the lowest in months.


So, it was off to the hospital with Deb this morning for another transfusion. I have received 23 units of red blood cells since September (please give blood!). We thanked the wonderful nurses in IV Therapy today with a huge box of Godiva chocolates. They have helped keep me alive for six months!


My doctors told me in November that my disease would progress in this way. In essence, my stem cells are producing less and less good blood cells. Untreated, my life would become more difficult now. I would need to refrain from any type of physical activity and any public contact. The good news is that my bone marrow transplant could not come at a better time. While I pack for our move to Rochester tomorrow, I do so with a smile on my face knowing that my cure is only weeks away. I am nervous, but ready!


April 7, 2005 I finished my first day of exams to see if I am in condition for my transplant. It was a pretty long day. They took about 10 blood samples for different tests, a urine and "you know what" sample, a bone marrow biopsy, electrocardiogram, echocardiogram, chest and sinus x-rays, pulmonary function test, and we met with a social worker. The system at Mayo is amazing. There is little doubt that my doctor will know just about everything there is to know about my body by Tuesday. Tomorrow is my spinal tap.


April 8, 2005 Deb and I met with a nurse in the Transplant Unit of the hospital. We learned a lot more information about the process. If all goes perfect, I will only be the hospital overnight for about a week. After the chemo and the transplant, they want me to leave the hospital as soon as I am able. But, I will have to visit the hospital once a day for quite a while. Afterwards, I had my spinal tap. It was no big deal. I am looking forward to a relaxing weekend.


April 9, 2005 Well, the weekend was not as relaxing as I had hoped. On Saturday, the hospital called with concerns about my hemoglobin levels. So, I had to go in for a blood test, which revealed that I needed another transfusion, just 10 days after my last one. This was solid confirmation that my disease is progressing and my health is getting worse. We had friends coming down for the night, so I begged off the transfusion to Sunday morning - yippee, they scheduled for 7am.


April 10, 2005 I began my day with a walk in the brisk morning to the hospital for a blood transfusion. I will have to admit, having a transfusion in the transplant unit at Mayo is like moving from coach to first class on a long-distance flight. I was set up in my own hospital room, cable TV and my own bathroom. This was deluxe compared to hospital IV departments. On the downside, my 7am appointment was right at nurse shift change, so it was a full hour before I had blood flowing to my arm.


Afterwards, I was able to rest for a while and then Kelly came down for dinner with Deb and I. She was just back from spring break and full of stories. We had a lot of fun.


April 11, 2005 Monday was an easy day, meeting with an oral surgeon to see if my mouth was infection and decay free (it is). Then, Deb and I met with a psychologist to see if we are mentally prepared for what's to come. After figuring out that we were ok, we spent some time analyzing the psychiatrist's life and her decision to leave Mayo (she will be fine).


April 12, 2005 This was a major education day. We met with a nurse practitioner in the transplant center. She explained the entire process again in the most detail we have heard. She told me for the first time that I may be released from the hospital as soon as the day after my transplant! This is great news. But, she also went through many of the complications that may happen post-transplant. We then met with the surgeon that will be installing my Hickman venous catheter in my chest. This "port" will most likely be in my chest for 100 days.


We then met with my transplant doctor and the nurse practitioner again to confirm my great condition for the transplant and go through the process one more time. I also had my blood drawn again to test my hemoglobin and platelet levels. I will probably get a transfusion of both on Sunday before we begin the chemo process. It was a very tiring day because of the amount of information we received.


April 13, 2005 I found out late yesterday that my donor is NOT from the U.S., but an international donor. They will not tell me what country, so Deb and I are currently memorizing just a couple ways to greet people with foreign languages - see the list here (ha ha). The donor's bone marrow will be harvested literally hours before I receive it. Someone from Mayo will fly to the foreign country, pick up the bone marrow and deliver it "fresh" to Mayo. Because of the foreign donor, I have been told my transplant will most likely be late in the evening. In addition, if the donor's blood type is different than mine, I will change to the donor's blood type.


I awoke to a commotion outside our window. I finally looked outside about 10am and saw the banner - Welcome to Rochester Governor Pawlenty. Within minutes, the governor was speaking right below our window. And you thought nothing happens in Rochester. See picture here.


April 14, 2005 I woke up this morning dreaming about Lake Minnetonka. Is ice out on my bay? Can I call the dock guys to have the dock put in? I checked my internet camera and to my surprise, my dock is already IN! I have hundreds of reasons to get better, but I just added a serene picture of my dock to the list. See it here.


April 15, 2005 I got my blood checked and it was determined that I would need a transfusion of red blood cells and my first transfusion of platelets. We scheduled it for Sunday. Deb and I also met with two different nurses to talk about the next couple days and met with my doctor one more time before we begin chemo. Everything is on track and we are ready to begin the process - see schedule here.


April 16, 2005 Saturday was a big day for visitors. Amy and Ben came to visit and also my brothers Tom and Tim. We all went out for dinner. It was nice to have a distraction for a while. We sort of celebrated Tom and Tim's birthdays. We talked about funky ways to cut my hair.



© Dan McGlynn