April 17, 2005 Started my Dilantin anti-seizure medicine. It is a precaution before I begin chemo with Busulfan on Tuesday. No one at Mayo has had a seizure from Busulfan since they began using Dilantin. The heavy dose of Dilantin makes me a little "woozy" though. By the afternoon when I got my transfusion of 2 red and 1 platelets, I did not feel I could walk on my own. So, Deb has been pushing me in a wheelchair ever since. What a way to travel.
April 18, 2005 I had to fast after midnight Sunday to prepare for surgery to put in my Hickman venous catheter. I reported to the hospital at 7am. They decided to give me one more unit of platelets before and during surgery. I was only mildly put to sleep for the surgery and I was in recovery in no time. After letting me drink some water, eat a sandwich and prove I could walk, they released me. On the way back to the apartment, I got my hair cut, instead of waiting for it to fall out. We had some fun with the haircut and took some fun pictures along the way. See them here.
April 19, 2005 (3pm) I didn't sleep too well my first night. Being without Deb only made it worse. But, like clockwork, they started my first chemo, Busulfan, at 6am. It runs into me for two hours and then I get a four-hour break. Then, it starts over again. I feel no effect at all. I am told this is pretty much normal. My really bad days will start about seven days after I received my new stem cells. I have had two doses and I am doing fine. Deb is here with me, of course, and we are playing games and passing the time away.
It is now 7:45pm and I am finishing up my third dose of Busulfan. I still cannot really tell any effects. I know there are some rough spots on the road ahead, but so far it has been smooth sailing. I am getting pretty tired from not much sleep. I am looking forward to sleeping better tonight.
April 20, 2005 I slept much better last night. I have now had six doses of Busulfan and no real side effects. I am on a slurry of other drugs to make sure that happens. My doctor said that this is normal, but others do have problems. My sister Molly came to visit today. Deb and I laughed away a couple hours with her. It was so nice to see her. She left me with some nice foil balloons (I can't have plants) and a lucky penny from my niece Mary - thanks Mary!
April 21, 2005 I have had 10 doses of chemo and all is going well. I am only five days away from my transplant! Deb and I are more bored than anything. The hospital food here is called Room Service. You get to pick what to eat, when you want to eat and they deliver within 30 minutes. It is not the best, but very convenient.
April 22, 2005 I have now had 14 dose of chemo. I had a pretty strong bout with nausea this morning, but they gave me some drugs to combat it. I never had to run to the bathroom. My sister Molly came to visit again. She bought me a couple t-shirts. I wore one around the hospital. I have no idea why people were staring at me - picture here. I am more and more tired, but Deb and I still made it out of my room for a walk.
April 23, 2005 Well, I really got hooked up today. They placed a urinary catheter in me (not fun) and hooked that up to endless IVs to rinse my bladder and drain it at the same time. In addition, in my chest IV I received endless IVs to keep my fluids moving. I also switched to the other chemo treatment, Cytoxan. It is only a two hour IV. With the big handful of pills I took, I had very little side effects. But, being hooked up to four tubes severely decreased my mobility. But for having only one more day of chemo, I could not be in better condition and spirits. I am almost done!
April 24, 2005 My last day of chemo was a breeze also. I took lots of drugs to keep it that way, but the day went really well. Sleeping with the catheter is the biggest hassle. But everything went as planned. I am done with chemo!!!
April 25am, 2005 I got my catheter out this morning at 8am. Boy, is that a relief. I now step into my final preparations for my stem cell transplant. I found out my timing on my new stem cells. Since they are from an international donor, their arrival at the airport is set for Tuesday at 9:30pm. If they miss that plane, they will arrive about 10:30am on Wednesday. Once landed in Rochester, they must be delivered to the hospital and sent to the lab for processing. So, my transplant will be either very late on Tuesday night or about noon on Wednesday.
They are pumping me up with cyclosporine, an anti-rejection drug today so that I am loaded up by the time I have the transplant. My hemoglobin levels have dropped again, so I am receiving two units of red blood cells this morning to boost my energy for what is to come. I am also receiving a handful of pills to help in many other ways - liver, lungs, viral, nausea, etc.
My father is flying home from Florida today to visit to me tomorrow. My sister Molly will be driving to Rochester with him.
April 25pm, 2005 I got a pass to leave the hospital from about 2:30pm today to 7:30. Deb and I bee lined it to the apartment for some relaxing, eating together and talking about the days ahead. It was a great departure. Then back to the hospital for more drugs and prep for tomorrow.
April 26, 2005 I found out this morning that my stem cells will not arrive until Wednesday. By the time they reach me, it will probably be somewhere about noon tomorrow. At that time my bone marrow transplant will begin. All systems are still and go and I feel fine. My dad and Molly came to visit today and we were able to leave the hospital for a long lunch. I will rest up tonight for a long day tomorrow. Deb and I doing great.
Thank you all for your continued prayers and concerns - they are all working, so don't stop now! I will keep you all posted the best I can tomorrow. I am certainly looking forward to my big day.
April 27, 2005 (Day 0) I received my transplant about 12:30pm today. My donor has the same blood type as I have. This meant that they could run the stems cells into me very fast. The whole process only took about an hour and a half. I had no reactions, so I am just staying in the hospital to be watched carefully. Everything has gone perfect. Thank you all for your prayers and concerns. My Dad, Molly, Deb and I are just relaxing in my room. See a picture of my certificate here.
April 28, 2005 (Day 1) My energy level has started to drop as my white blood counts drop. I will make entries as I have energy. Day +1 was pretty good. They actually checked me out of the hospital at about 2:30pm. It was good to be at the apartment overnight with Deb. My appetite has diminished somewhat as well. Deb and I are trying hard to keep me full of food and water. I also had a tough day with diarrhea - another side effect.
April 29, 2005 (Day 2) It is so good to be in the apartment. I am fighting with some nausea this morning and lost my breakfast. I report to the hospital at 12:30pm to see how I am doing.
April 30, 2005 (Day3) The doctors are monitoring my blood levels closely. I continue to fight nausea while continuing to get enough calories. Day 3 and I am doing fairly well. Got second of four low dose chemo for Graft VS Host disease.
May 1, 2005 (Day 4) When I woke up, my tongue felt very large in my mouth. I showed it to Deb and she called the hospital right away. They told us to come in right away. By the time we got there, my tongue was back to normal size. My nausea was worse and I could not eat or keep water down. They admitted me back into the hospital. They began new treatments for anti-nausea, antibiotics, and pain. In addition, they gave me fluids via IV. I also had a fever over several hours. This triggered automatic cultures to see if I had some sort of infection.
May 2, 2005 (Day 5) I began a regiment of trying to drink small amounts of water without vomiting. It took some practice, but after several hours, I could drink water again. Then, I discussed my nausea treatment plan with the doctors. After a short time and drug changes, I was able to eat food again. They continued to add to my fluids via IV. I began to feel a little better, but needed to stay in the hospital. My temperature was kept down with Tylenol.
May 3, 2005 (Day 6) My cultures from May 1 came back positive for a staff infection. About 90% of transplant patients get a staff infection. They said it could be from a bout with strep throat from many years ago - it becomes active when the white blood count is low and cannot fight it. In addition, my fever is still under control with Tylenol. I got my third injection of post-transplant chemo. It will help in control of graft vs. host disease. I feel pretty good and I am eating fine. The food doesn't taste good because my taste buds are dying, but at least I can keep food down now. I will probably be in the hospital for a couple more days.
May 5, 2005 (Day 8) Cinco de Mayo Hola! I am still in the hospital. The doctor team has been working on a staff infection, low grade fever, higher than normal blood pressure, mouth sores, skin rashes, vitamin deficiencies, bruising, and hydration. I am improving on all these issues, but new ones pop up every day. I feel very good and have been sleeping well. All in all, I am still right on track. Thank you all for your prayers. They are working!
May 7, 2005 (Day 10) I have lost all my hair now. I look pretty funny. But, not too unlike most of the patients in my unit. I am still in the hospital while the doctors watch my symptoms carefully. I have been fighting with nausea and diarrhea, skin rashes, sore mouth, liver concerns, etc. The doctors and nurses continue to keep me pain free as we deal with each problem. All in all, I am doing great.
May 10, 2005 (Day 13) My energy level has dropped to its lowest level. I slept most of yesterday, last night and today. In addition, I have been fighting with nausea and loss of appetite. My doctors are very pleased with my progress. This nausea, and loss of appetite and tiredness will probably last another week. I will post when I feel up to it.
May 11, 2005 (Day 14) I am feeling pretty good today, despite my tiredness and complications. The doctors are very happy with my progress and we should see my white blood counts start to rise within the next 3-5 days. I can hardly wait, I will begin to feel a lot better when that happens too.
May 12, 2005 (Day 15) My new stem cells are starting to work! The first blood cells being made are the white blood cells. Most of them them are working hard to repair sores in my mouth, stomach and digestive tract. But, my the white blood cells level in my blood took a small jump today, the highest levels in several weeks. The doctors are very optimistic about my quick recovery. They are hoping to release me to outpatient status sometime next week!
May 15, 2005 (Day 18) Update - got released from hospital at about 3:30pm. Oh happy day! I am now an official Outpatient! My white blood cell count has not jumped higher than Day 15, but I know from my healing mouth sores that they continue to increase. My guess is that my white count will jump tomorrow or Tuesday. Deb and I are looking forward to some quiet days at the apartment. The hospital is really not a place to catch up on rest.
The doctors continue to be amazed with my progress. I can tell you that there are lots of patients in my unit that are really going through a rough time. There are still many challenges ahead for me, but so far, I am doing excellent!
Thank you all for your prayers and concerns. You are helping me cope everyday with my progress. I could not do this without your support! And my loving family, especially Deb, have been with me daily giving me strength to endure this process. May God shine His love on each of you! I love you all!
May 18, 2005 (Day 21) Wow - it has been THREE WEEKS since my transplant! My white blood count reached a new high today of .5. I feel the best I have since I started chemo. I am walking to and from the hospital and I am eating and drinking more than I have since my transplant. The doctors continue to be very pleased with my success.
I am still having lots of little issues, but they are all being monitored - low grade fevers, nausea, skin rashes, liquid intake (I am dying of thirst, but my stomach cannot handle liquids fast), caloric intake (hello? for Dan? - yes, my best day is about 1200 calories), minor diarrhea, mouth sores, etc. These are all pretty minor compared to my overall progress.
Deb's job is now in "power mode." She prepares all my meals, lays out all my meds (about 30 pills over 5 different times every day, keeps the apartment clean, communicates with many family members and our home sitter, and reports my food and liquid intake to the doctors. She also keeps track of my hospital appointments and gets me there on time. Believe it or not, we are actually busier now than when I was in the hospital. I have appointments at about 7am, 2pm and 10pm every day. They can last anywhere from 30 minutes to 2 1/2 hours. While at home we spend every minute sleeping, eating or trying to catch up on communications. I predict it will be several weeks before we can have visitors.
May 20 (Day 23) My white blood cells on Day 21 were .5, dropped on Day 22 to .4, but, today, my whites hit a new high of .6! That is roughly half of the level I will need to move to the next phase. So, things are still progressing on track. Yesterday, I felt so good that I quite my pain medication, walked more than ever, and tried eating orange juice and pizza [note to self - do not try this all in ONE day!]. By the end of the day, I was totally exhausted and not feeling too well. I have decided to take my advances one step at a time. I feel much better today.
May 22, 2005 (Day 25) My white blood cells continued to climb to .7. And my treat for the day was a visit from my father! It was so good to see him again. I saved up a bunch of energy so that I could accompany Deb and my father to our favorite Rochester restaurant. I still cannot eat in restaurants due to my low white blood count, but Deb was able to enjoy a nice evening out.
May 23, 2005 (Day 26) My day was normal (considering my condition), but my son Andy graduated from Boston College today!! CONGRATULATIONS ANDY!! Deb and I had planned to be in Boston for 4 days to celebrate with Andy, but we will have time to for that this summer.
May 24, 2005 (Day 27) My white count hit a new high of .9! I am getting very close to having a low, but adequate, amount of white blood cells. Once this happens I will be taken off one of the antibiotics that I receive via IV three times a day at the hospital. My quality of life will improve dramatically.
May 26, 2005 (Day 29) My white count passed the magic mark of 1.0. In addition, my body is making its own platelets and red blood cells. Because of this, I only need to go the hospital once a day now - unless they find something a little off in my blood tests. This improves daily living for Deb and I considerably. I can finally catch up on some much-needed sleep.
May 27, 2005 (Day 30) My doctor surprised Deb and I with talk of a "pass". This means a day that I do not have to come into the hospital and they suggest that Deb and I return to our home for the day. We were amazed. They gave us options for a pass day, a hospital day, followed by a pass day. Or, we were offered Saturday as a hospital day and have Sunday and Monday (of Memorial Day weekend!) both as pass days. We enthusiastically chose to have 2 days off in a row. Since about 20 things needed to fall into place for this to happen, we decided not to tell anyone.
May 28, 2005 (Day 31) Saturday was a very nerve racking day. I went in for my morning tests to see I would be able to take the next two days off. There was a little glitch in which tests I needed. After a second trip to the hospital, we got the final test results about 2:30pm. We were free to leave for 2 days! We packed the car and were home on the Lake Minnetonka by dinner time. Since it was our first trip outside Rochester, we only told our house sitter and my son Andy that was planning to be home from college on Sunday. It felt so wonderful to home, sleep in our own bed and see the green yard. We were in heaven!
May 29, 2005 (Day 32) We were home today and had to start telling our kids. But, Ben was having a Memorial Day weekend barbeque at his house. Instead of calling him, we figured the only way to tell him would be to surprise him. And we knew Amy was going to be at Ben's, so we extended the surprise to her. Next, we called Megan and Kelly to see if they could join us in going to the party. They were very excited to hear we were home and both made plans to join us. In the mean time, I needed to rest up so I could be up and around at the barbeque. Deb, Megan and Kelly and I drove up the barbeque and I surprised Ben by calling cell phone to cell phone telling him the connection was so clear it was as if I was standing right next to him. Then I walked right up to him. Ben and Amy were so glad to see us they were speechless. I mustered up enough strength to stay about 3 hours. It was very fun. Again, Deb and I were in Heaven.
May 30, 2005 (Day 33) Memorial Day Megan and Kelly woke up fairly early and had to leave for work and school projects. I called my Dad to tell him Deb and I were home. We made plans for them to visit in the afternoon. He was so shocked to here we were home. The whole weekend I was in touch with Andy and we planned on him being home Monday (today) in the afternoon. It was a perfect day on the Lake and we spent hours on our deck watching the boats go by. It was great to see my Dad and Rosalyn and then Andy arrived home shortly before we headed back to Rochester. Deb and I were in heaven.
Deb and I knew I could not go from "mostly resting" days to "heavy visiting". I do not have that kind of energy yet. We knew that seeing all of our kids and my Dad and step-mom would even be pushing my endurance. We were right. It was very tiring for both of us. We will see family and friends when I know I am able. Until then, thank you for your thoughts and prayers. I feel better every day. I hope we can get more "passes" soon.
June 1 (Day 35) I have developed a rash over 70% of my body. I saw a dermatologist today. They took a biopsy of my skin, but believe the rash is eczema or graft vs. host disease (GVHD). The biopsy will hopefully give them a clue. We are hoping it is GVHD so that we can cure it and hopefully be done with it. In the meantime, I need to apply special lotions to my body twice a day, wrap in wet cotton and let the lotion soak in. Not exactly comfortable. My white blood, platelets and hemoglobin numbers continue to fall into line. I feel pretty good, but I itch like crazy in a couple places.
June 2 Day (Day 36) The great news today is that I was scheduled to see my primary doctor in the Transplant Clinic. When I met with the team there, they informed Deb and I that we are now patients of the Clinic! This is great news! When I entered Mayo, I was considered inpatient, then I moved to outpatient and now I am considered a Clinic patient! Clinic is not located in the hospital and more like going to a doctor's office. While in Clinic, we will get more passes to go home and eventually be released to go home. We have reached the third and final stage!
The results of my rash biopsy were not back from the lab yet. My rash has now spread to 80% of my body and gotten much worse. In addition, my blood tests reveal that my kidneys are not performing well. My doctor scheduled me for a kidney test tomorrow.
In addition, my blood pressure has been pretty high. We believe this is mostly from the cyclosporine I am on, but the doctor added a blood pressure lowering medication.
June 3 (Day 37) I had my kidney test (2 hours) in the early morning. I showered when I got back to the apartment and felt very faint afterwards. I saw a kidney specialist in the afternoon. They checked my blood pressure - 80/55! I guess the ONE pill I took for blood pressure lowering worked too well and explains my light-headedness following my shower.
The specialist said my kidneys are only working at about 20%. He said he believes that it may be because of the rash, in effect, spreading to the kidneys. Or it may be by me receiving both penicillin and another antibiotic at the same time. Since my kidneys deteriorated so fast, he believes they may heal just as quickly. He spoke to my primary doctor and virtually simultaneously they both recommended to put me on steroids. They figure steroids could fix both the rash and the kidney problems. My primary doctor also stopped both the blood pressure pill and the penicillin and adjust one dosage and added steroids and another medication.
June 4, 2005 (Day 38) My rash has already improved. My skin has changed from like an orange peel to a lime peel overnight! The clinic is closed on Saturdays, so they brought me into the outpatient area today to monitor my blood tests on a daily basis. I feel much better. Andy and Megan came down today to spend the night.
June 5, 2005 (Day 39) Having Andy & Megan around was great. We went to a sports bar for dinner last night. I found out that the steroids I am on is what is driving my appetite. It is incredible. I am eating like a horse.
Today is Deb and my 13th wedding anniversary! I am truly blessed to have a soul mate as wonderful as Deb.
So, we had plans to have brunch with Andy and Megan at the Marriott across the street before they returned home. But, Megan was scheduled to work at 11am today (waitress at outdoor pool), and so Andy and Megan had to be on the road by 9:15am for them to make it. Unless, of course, we new it would rain. Weather.com reported certain rain in the afternoon based on Doppler forecast, but the morning looked ok in Minneapolis. So, we abandoned our rainy day plan and they headed for home. At 10:55am while Megan was one block from work, they called her cell phone and cancelled work for the day...
My rash is healing quickly while all of my blood counts are improving constantly. We meet with my primary doctor Monday afternoon. We hope to hear that we will be able to to take occasional trips home again soon.
June 6, 2005 (Day 40) My doctor is watching my liver, kidney, blood pressure and skin rash closely. Because of the steroids and other medications, the levels have not been very stable. On the good side, the steroids are clearing up my rash in a quick hurry. Amazing!
June 7, 2005 (Day 41) Met with kidney specialist again. He is very happy with my rash progress and believes my kidneys will improve as the rash improves.
June 8, 2005 (Day 42) I received lung "drug mist" treatment today that will help my lungs fight infection for 30 days. My lungs have been very clean, but my doctor wants to keep it that way. I also met with my primary doctor. He is happy, but cautious about my progress. He is watching my blood pressure closely and wants me to stay in town until at least Thursday.
June 9, 2005 (Day 43) My blood pressure is still fluctuating on the high side and my doctor wants a second check on it before I can be released to go home for the weekend. Although my pressure was still a little high, my rash has improved along with other levels. My doctor cleared the way for Deb and I to head home for the weekend. We packed and scrambled home by early Thursday evening. Everything was so GREEN on the lake. Deb and I had a nice quiet dinner on the deck and enjoyed the sunset.
June 10, 2005 (Day 44) Andy was out of town for the weekend, but Amy, Ben and Megan came to the house for a barbeque. We laughed and had fun until way past my usual bedtime. I was tired, but Deb and I really missed the kids.
June 11, 2005 (Day 45) Deb and I treated ourselves to in-home massages in the morning. Then, Deb, Megan, Kelly and I had our first summer lunch at Maynard's on the lake. It was raining and we ate inside, but it really felt like home. Attending mass at our home parish later was a real treat. I was tired from a full day. Deb was correct in telling me to slow down.
June 12, 2005 (Day 46) All the kids (but Andy) were around for part of the day. I started to dread having to return to Rochester. We decided to leave for Mayo on Monday morning to stretch our weekend as long as we could.
June 13, 2005 (Day 47) Monday was a long, but good day. We arrived at Mayo in plenty of time for my blood draw at 8:30am and saw my doctor at 2:30pm. My hemoglobin level was a little low, which can happen during this period. So, they gave me two units of blood. But, we still made it home by 11pm. Commuting to Mayo is a long day, but sleeping at home makes it all worth it. Next appointment on Thursday.
June 19, 2005 (Day 53) Happy Father's Day to all the the fathers!! I am very happy to be around for this one. And I am a lucky 51 year old to still have my father here to celebrate with. His daily contact with me throughout my transplant process was always an inspiration for me - I love you Dad! Time with my kids on the lake today too. It is one of the best weather days in MN this year! Back to Mayo tomorrow.
June 16 (Day 50) Day 100 is about when I will have a thorough exam at Mayo to determine my full bone marrow transplant success. Today marks my half way point to that goal. My checkup at Mayo today was favorable, but they started me on a very low-grade blood pressure medication. Back home afterwards - next appointment on Monday.
June 20, 2005 (Day 54) We met with my doctor and we all concluded that the rash is returning. This time it is doing so without effecting my liver or kidney functions, so the doctor is convinced that it is graft versus host disease. This is most likely a good thing. Now we can treat it separately from other problems. My doctor increased my dosage of steroids again and sent us home.
June 22, 2005 (Day 56) The steroids have kicked in and the rash seems to be improving. Back to Mayo tomorrow to check with the doctor. Deb and I got lots of work done around the house.
June 23, 2005 (Day 57) My rash is improving, but my blood sugar level has been on the rise. My doctor explained that this is another common effect of steroids. Deb and I met with a diabetes specialist and they put me on insulin to help maintain my blood levels and help my pancreas. This should be a temporary condition until my rash improves and my steroids levels are lowered. So, the king of blues, B.B King, and I have one thing in common - we both use the same One Touch blood sugar meter (I named my meter Lucille).
June 26 (Day 60) Deb and I have officially moved home! We have not spent a night in Rochester since June 8th and have moved out of our apartment. My regiment of pills, blood pressure checks, ointments, insulin shots and blood sugar monitoring keeps Deb and I very busy. We still drive to Mayo twice a week for blood tests and see my doctor. Our little spare time is spent with our kids and trying to catch up on much needed rest.
September 29, 2005 (DAY 155) It is my birthday today. While I am considered to be 52 years old, I also see myself as being 155 days old since my transplant. I am rejoicing in being alive! My current condition is very good. My doctor expects a full and complete recovery. In the meantime, I am building back my immune system and taking many drugs to help the process. I take about 20 pills per day plus an insulin shot. (I am a steroid-induced diabetic - this will hopefully end when I quit taking steroids.)
While I get a few muscle cramps and other symptoms, I am pain free - a problem that so many other sick people have to deal with. Deb is still my constant companion and helper through all this. I don't know what I would do without her.
We still visit my doctor at Mayo weekly for tests and an exam. My doctor wants to keep a close eye on me so that no symptoms of problems become larger issues. Deb and I look forward to lessening our dependence on Mayo, but that may take a while.
October 21. 2005 (DAY 177) Deb and I returned home three days ago after spending an entire week in Rochester. I had developed both staph and strep infections in my blood system and was on antibiotics IVs to recover. My doctor called me at 10pm at home when the blood cultures were positive for the infections. Deb and I drove immediately to Mayo where I began my IVs at 2:00am. In addition, I developed a skin rash at the same time. The doctors watched me closely as I began to fight the infections.
I am doing much better now and the rash is beginning to fade. I estimate my energy level at about 15% of normal. I continue to watch for any symptoms of infections by monitoring my temperature closely.
November 2, 2005 (DAY 189) Since my episode at Mayo last month, I had been doing very well. Halloween night I went to bed feeling fine. I woke up yesterday about 5:15am with severe chills. I woke Deb about 7am to get my thermometer and had a temp of 103.2F. We called Mayo right away and they said go to to a local emergency room. Deb got me to the car and off to Fairview Southdale. I started in ER where they gave me Tylenol, an antibiotic and saline IV. They also drew blood for tests and cultures. My temp began to drop right away. I was admitted and a room at 3pm and my temp was down to 98.9. My hematologist doctor is on vacation, but one of his colleagues saw me. They believed I had some kind of infection or a virus. They kept me in the hospital overnight. My doctor just came in and informed me that I have a strep infection, so I will be getting some more antibiotics via IV and will be in the hospital at least until tomorrow.
November 7, 20005 (Day 194) They kept me in the hospital until they could determine the strain of strep that infected me (see posting below). I was finally diagnosed with streptococcus imtermedius on Saturday morning while still in the hospital. Once diagnosed, they prescribed Clindamycin, an antibiotic, and let me go home Saturday night. I am home now and feeling well. I return to Mayo tomorrow for a regular checkup. I have dodged another bullet...
November 15, 20005 (Day 202) Well, it turns out I did not dodge another bullet as written in the post below. They drew blood cultures yesterday at Mayo which turned up positive this morning for streptococcus imtermedius (strep) again! My Mayo doctor called me at home this morning and wants me on IV antibiotics right away. I tried to make arrangements to receive treatment at Fairview Southdale today, but my doctors at Mayo and Fairview did not talk together on the phone until late in the day. Looks like I will be going in tomorrow.
November 16, 2005 (Day 203) I went to Fairview Southdale today for my first IV of Vancomycin, a different antibiotic than we used last time to fight off the strep infection. The IV takes an hour and a half to drip into my blood stream. I feel fine, but I know the Vancomycin will be fighting a war in my blood stream. I will need to visit the hospital every other day until about December 1st.
November 24, 2005 - Thanksgiving (Day 211) I have a lot to be thankful for today. I am alive and feel wonderful. Andy and Megan are home for Thanksgiving and we have have been having so much fun with the whole family. I started the day early. While Deb put the turkey in the oven and prepared for her family to arrive, I went to the hospital for an IV treatment. As soon as I returned, everyone showed up for a fun day of food and conversation.
November 28, 2005 (Day 215) I have had six IV treatments to fight off my strep infection. I was able to skip my treatment today, but will go again tomorrow. On Wednesday it is off to Mayo for my regular checkup. Deb and I will also be meeting with an infectious disease doctor to evaluate my strep infection treatment. Hopefully, the infection is gone and we can move on. I am still hopeful for 30 days without any complications.
November 30, 2005 (Day 217) The infectious disease doctor at Mayo ordered an echocardiogram (an ultrasound of my heart), to look specifically for vegetation (growth) on my heart valves. Bacteria growth on the heart valves can be an offshoot of a strep infection in the blood system. If not treated, it can lead to heart valve failure and possible need for a mechanical valve replacement.
On the happy side, my other conditions continue to improve and Dr. Hogan reduced my anti-rejection cyclosporine level by 25% and dropped my steroids (prednisone) from 17.5 to 15mg daily. I continue to feel pretty good and my strength is slowly increasing. So, we were at Mayo a little longer than we anticipated. We got up at 5am and arrived home from Mayo at 10pm - a long day.
December 1, 2005 (Day 218) Mayo called and the scan on Wednesday was positive for growth on a heart valve (see entry below). So a further, better scan test has been ordered for Monday. It is called a transesophageal echocardiogram, or TEE http://www.mayoclinic.org/echocardiography-jax/tee.html. For this test, they sedate me and put a tube down my throat to project a better picture of my heart and its valves. So, Deb and I will be at Mayo on Monday. In the meantime, I will receive IVs at Fairview Southdale on Friday and Sunday.
According to my doctor, the treatment for this growth is the same I am receiving now (Vancomycin IVs), but probably for a longer period of time. I am now scheduled to receive IVs until December 15th, but I am guessing that they will continue treatment until about Christmas.
December 5, 2005 (Day 222) My TEE at Mayo procedure was painless. They gave me a very nice IV that kept me conscious so they could give me instructions, but I don't remember a thing. They determined that I have strep growth on the strands attached to my aortic valve in my heart. The treatment remains the same, to kill the bacteria with Vancomycin and continue treatment every other day until January 11th.
My cultures have been negative since November 30, so we are really just in the process of running out a long term antibiotic to make SURE it does not return.
December 6, 2005 (Day 223) We returned to Mayo to test my allergy to Penicillin. It was determined that I am allergic to Penicillin in June, but they want to re-test me since Penicillin is the drug of choice to fight my strep infection. It turns out that Penicillin will not give me a skin rash, but they cannot determine if my kidneys will be damaged from Penicillin. So, it was decided to continue with Vancomycin.
December 17, 2005 (Day 234) I have had sixteen treatments of Vancomycin IV, either at Mayo or Fairview Southdale. For each treatment, they need to start an IV, and then I am hooked up for an hour and a half as it is pumped in. I will get treatments every other day until January 11th.
I continue to feel very well and my energy is growing faster than ever. Just this week, I climbed three sets of stairs in a row. I could not have done this a month ago.
2006 and beyond - My health continued to improve. While I had some serious bouts with pneumonia, skin cancers and other problems, my general health continued to improve. Over time I gained a bunch of weight I lost while I was "in the fight". After realizing my weight was climbing too high, I began an aggressive exercise plan and got back to a reasonable number. I am enjoying retirement, moved to Florida and only see doctors for issues unrelated to myelodysplasia. I have been cured. I am in communication with my donor in Germany and we a nice relationship. I am forever grateful for her gift to me.