February 1, 2012


Dear Friend,

This is my first letter of this new year. The holidays are over, and I am looking forward to the arrival of spring. We have had so many days that give the hint of spring weather.

Two of our children and two of our grandchildren were able to spend Christmas with us. We enjoyed having family with us. I am now looking forward to more family visits.

The end of 2011 brought some changes in my medical condition. I am still trying to increase my fluid intake and finally I am having some success. I had a scare at the end of December when my hemoglobin count dropped to 8.4, and I had to have a transfusion of packed red blood cells. Following the transfusion, my counts increased to 10.4 and are continuing to improve. On January 24, my hemoglobin was up to 10.8. I would like it to go back to 12 where it had been after the transplant. At the same time, an EPO blood test was performed and my levels were too low. EPO is produced by the kidneys and are important in the production of hemoglobin. Beginning in January, I started receiving weekly Procrit shots to replace the EPO that my kidneys are not producing.

My creatinine levels were still too high having increased to over 3.0 when they should be below 1. I just do not drink enough fluids. I now have a new routine. Each morning, I put containers equaling 64 ounces on the counter and make sure that I drink enough before bedtime each day. As a result, my creatinine levels are improving. On the 24th of January, my creatinine level had dropped to 2.48. I am determined to see continued progress.

At the end of December, the iron and Vitamin D supplements were stopped because my levels had returned to normal. That did not last. The Procrit shots usually result in the lower production of iron, so the iron supplements had to resume in late January. Also, I am again taking the Vitamin D. Iron levels should be between 60 and 170. Mine was low at 13. Once the supplement starts working, I should not be quite so tired.

This will be a wonderful year for me. I will be blessed in March to turn 72, but more important will be rebirthday 9. That is nine years since transplant. In July, we will also celebrate our 50th wedding anniversary. I am so fortunate to be a survivor and enjoy these upcoming events.

I do think often about my other MDS transplant friends. And the journeys they are taking. My wish is that everyone that is healthy would register to Be the Match for someone needing a stem cell transplant. Everyone deserves a chance at life. There is not much more news here. I will be thinking about you and will write again soon.




April 1, 2012


Dear Friend,

I realize that I just updated you on my progress at the beginning of February, but there have been enough events in my life to update you again. February was quiet, and I continued to work on fluid intake to try to keep the kidneys stable. It must be working as my blood tests remain stable. I must continue to drink, drink, drink. The part I don't like is drinking a cup of the salty chicken bouillon every day to keep my sodium levels up. I was always one of those individuals that read labels and watched the sodium intake..a mistake for my body.

When I have my blood tests in April, I will know if I must continue with the iron and Vitamin D supplements.

In February, I had two eye appointments. I went to Dr. Zuravleff about the right eye irritation. It is caused by a "droopy" lower lid. He recommended another eye surgery and suggested that my other eye doctor give his opinion. It was the consensus that I have the surgery. It is a retractor/recession of the right lower eyelid using a piece of ear cartilage. The purpose is to build up the lower lid so that the eye closes properly without causing extreme eye irritation. I just hope that I am in a deep la la land as when I had the eye surgery in November, the surgery did not hurt, but I was alert throughout the procedure. I thought I should do this update now as I might have a little difficulty reading for a week after the surgery. This surgery will be at 8:45 AM on April 4.

March brought some very happy events for me. On March 2, I celebrated my 72nd birthday. At about 9:00 AM, there was a knock on the door. I was still in my pj's and robe and could not imagine who would be knocking that early. Surprise! I had two very special birthday presents. Kelli and Cameron flew in for the weekend. Cameron was the first in the door, and he was wearing birthday bows on each shoulder. A great present! They spent that Friday, Saturday, and Sunday with us. We ate out on my birthday, ordered in on the next day, played several games of Rummikub and just enjoyed ourselves. Since I have to share my day with Dr. Seuss, Ross took Cameron to the movies to see the new movie.

March 15th was another day of celebration for me with my 9th stem cell transplant rebirthday. I received many messages and also a beautiful spring bouquet from a young transplant friend. For some reason, I do like the month of March!

I continue to enjoy most of my time. I have a few new crafty projects that I am working on. So far, I am pleased with results. I thought about going to the Spring Bazaar this weekend, but I think I would rather go to Hobby Lobby. I sure love that store. I also like Pinterest as I can find incentives for new projects. I have been working on a different kind of crocheted necklace, completed a flower wall hanging, and have made a pretty rose from coffee filters. Must make a few more for a bouquet!

Must close and enjoy the day. For some reason, we went from fall to summer with just a touch of winter and spring mixed in. Now I am waiting for warmer nights so I can put tomato plants on the patio.

I do think often about my other MDS transplant friends. And the journeys they are taking. My wish is that everyone that is healthy would register to Be the Match for someone needing a stem cell transplant. Everyone deserves a chance at life. There is not much more news here. I will be thinking about you and will write again soon.



August 1, 2012

Dear Friend,

I decided that it was now time to send an update as I have not shared much medical information beyond immediate family since my April 1, 2012 update. April started out great, but then on the 18th I started having elevated temperatures up to 100.5 to 101.4. I decided to take Tylenol and kick the little bug. On the 21st, the fever broke, and I continued with my plan for the Be the Match run/walk. I don't think anything could have stopped me as I was fulfilling my mission. About five years ago, I had planned to walk with our grandson, Matthew, as survivors in the Relay for Life in Georgia, but I had one of my bumps in the road. This year, Ross and I both took part in the Be the Match run/walk. I walked with Matthew in my heart and to celebrate my stem cell transplant survival of over 9 years.

Later that day, the fever returned. Finally on April 21, I went to MCV Bone Marrow Clinic. Blood cultures indicated that I had a blood infection, and I was placed on antibiotic IV's of Vancomycin at home as I refused admission to the hospital. I told them I would do whatever I had to do in the clinic or at home. For a couple of weeks, we had to go to MCV clinic almost daily for blood tests and fluids. At least I had my own bed at night.

I could not take the antibiotic daily as it was not clearing the kidneys at a normal rate with the levels in the toxic range. The doctor also ordered a CT scan of the lungs and an echo-cardiogram. It is a good thing that I decided to go to the clinic as I was diagnosed with endocarditis, an infection on the heart muscle and pneumonia caused by the infection on the heart muscle.

On May 14, I started on a different antibiotic (Daptomycin) that would clear my kidneys without problems. Later, you will read about the problems with this antibiotic, but I had no choice as I could not tolerate the Vancomycin. The Daptomycin was apparently working. I continued throughout May into June on the antibiotics.

By June 12, I was having difficulty breathing and had pain in the lower right rib cage. Ross took me to the emergency room at MCV at 5 in the afternoon, and I was finally admitted at 3 AM the next morning to spend 5 days in the hospital. In the emergency room, the staff rushed to treat me and at first said I was having a heart attack, I told them that I did not think so. A second EKG confirmed that I was not having a heart attack. A blood test indicated that I had blood clots in my lungs. I was sent for a scan and no clots were found. They then thought they were getting an indication that my pacemaker was not functioning correctly, and a manufacturer's technician was called to check it. Fortunately, nothing harmful was found only a slight adjustment was required. I was admitted to the hospital. Another scan indicated that the first pneumonia was gone, but I had a new pneumonia in the right lung. The doctor for infectious diseases reviewed all my test results and the antibiotic, Ceftriaxone, was started to replace the Daptomycin. When it was determined that my heart was fine, I was moved from the cardiac wing to the bone marrow transplant floor. One of the nurses and two of the doctors from the bone marrow clinic came to visit me while I was in the cardiac wing. I had not been an inpatient since 2004. I returned home on the 18th of June.

After two weeks on the new antibiotic, I thought I was free of the pneumonia. Four days after the last dose, I started having a low-grade fever in the afternoons with it never going above 99.5. I called the clinic, and it was decided that I would watch the temperature and call if it went above 100.4. After 8 days, I decided enough was enough and went to the clinic. A chest x-ray determined that I still had the pneumonia. The antibiotic was restarted for another 14 days. I had another CT scan of the lungs on July 20, and this scan was compared with the one from June 14. I received the news on Monday, July 23; I am finally free of the pneumonia.

It has been a long three months, with first a blood infection, endocarditis, pneumonia, then a second pneumonia. Needless to say, this all took a toll on my strength. Now I am working on getting stronger. I had been using a wheelchair when we went to the clinic, but this week, I walked. It felt good to walk and not be dependent on the "push" in the chair.

I really have not gone into all the details of these past three months. I just want to emphasize the importance of asking questions, researching, and asking more questions. I realize that some of the side effects of medications may not be pleasant, but sometimes there is no choice. I was fortunate that the Daptomycin would clear the kidneys, but I also had one of the rare side effects. For four days after completing this drug, I had extreme shaking of my arms and hands (slopped the soup all over), and had weird visions with difficulty separating fact from fantasy for two of the days.

I hope that all patients keep accurate records. I would recommend that the patient maintain an up-to-date list of all medications and dosages as sometimes the records on file may not be accurate. One example of following up on everything - on my last day before leaving the hospital, we had to wait for a Procrit shot. We found out the pharmacy had not sent it up as they stated the patient had gone to dialysis. Wrong, I am not on dialysis. One other time, before moving to the bone marrow floor, I was given a copy of menu selections. The menu was for patients on a gluten free diet. Wrong, I just cannot tolerate peppery or acidic foods due to the mouth GVH. Be your own advocate as by doing so you will add years to your transplant survival.

On July 14, we celebrated our 50th wedding anniversary with a quiet day at home. I was still on antibiotics, but happy to be here. These last few months have been difficult, but I am one stubborn, determined person. At this rate, we may be here for our 60th. I look forward to regaining my strength and being able to spend time with my family. Also, I need a good shopping outing.

I do think often about my other MDS transplant friends and the journeys they are taking. Everyone deserves a chance at life. I think that this is more than enough news from here. I will be thinking about you and will write again soon.




August 17, 2012

Dear Friend,

This is just an update as I had a visit back in the hospital. We thought everything was fine. Then Sunday evening, August 5, I started running a high fever of 100.8. I went to the clinic Monday morning for tests and was admitted Monday afternoon. I really must be ill to agree to being admitted. I stayed in the Bone Marrow Wing until Monday evening and then was transported to Critical Care ICU for the next 48 hours. I had a severe case of blood infection, pseudomonas. It can be lethal, and I was seriously ill. I was transported so they could raise a dangerously low blood pressure of 67/40. The blood pressure had to be raised so the antibiotics could begin working.

While in ICU, a blood pressure port was inserted in the wrist so constant reading could be taken and also to provide constant access to blood draws. They could not get it into the left wrist and succeeded on the second try in the right wrist.....very painful. I was hooked up to several machines. Four large IV bags at a time...two being medicine to raise the blood pressure. I do not remember everything that happened in ICU. That may be a good thing. I just know that there was the possibility that I would not survive.

On Wednesday, I returned to the Bone Marrow Wing. My port was removed with difficulty because of the scar tissue. They had to go from the groin to the chest wall to remove it. Then a temporary port was inserted in the groin. On Thursday, they sent me to have a picc line placed, and they were unable to do so at that location and so I was transported to Interventional Radiology. They placed the line with difficulty as my veins are so small. All blood draws and medications now go through the picc line. The line in the groin was pulled Friday.

My blood pressure had gotten too high and I had retained too much fluid. My white cell count went to 39 and my platelets dropped to 42. The platelets had to be corrected with a transfusion before the groin line could be pulled. They did have to give me a small dose of steroids which I cannot tolerate. As a result I have lost a lot of muscle use in my legs (temporary). I cannot move from a sitting to standing position unless the seat is elevated. I have not been allowed to get out of bed without assistance...very embarrassing. I had an excess of 23 pounds of fluid.

Finally some good news (August 12) this morning. My blood pressure continues to be a problem. The platelet infusion worked even though it took 48 hours to get a match. My white counts dropped overnight from 39 to 13. I still look quite big from the fluid, but now only have about 12 pounds of it. I am very tired and weak.

At least twice, my new picc line refused to allow for blood draws. At first, it was thought that it might have pulled out of the vein. After several hours, the blood was drawn. Once I am finished with the antibiotic infusion process, the picc line will be pulled. My veins are so very small that I will probably have another port in the chest wall for future blood draws. I had the previous port placed on August 10, 2007.

This afternoon (August 12) I walked a little, very slowly with a walker. Then I took a nap. This has been a trip through "H...", but the doctors seem pleased with the progress. I must thank the doctors and my friend Nurse Judy that convinced me that I just had to stay in the hospital. If I had not agreed, I would not have been able to write this. A little prayer will help.

August 16, I will be released today. My fluid excess is still almost 11 pounds. I must now keep the left arm elevated as it is extremely swollen. If the swelling does not go down by Monday, they will do an ultrasound to rule out a blood clot. Ross borrowed a wheelchair as the walk from the car to our door is too steep for me to conquer. I only plan to use the chair for the initial return checkup trips to the clinic. The doctor has checked me over thoroughly, and I will be released. I will continue with the antibiotics via IV at home until the end of August. I will probably have weekly visits back to the clinic.

August 17, we arrived home safely yesterday afternoon. I have kept the arm elevated on pillows, and I am pleased to report that the bony, wrinkled look has returned. I have never been so happy to see wrinkles, veins, and bones. I spent a comfortable night and continue to progress. I am just very tired. I weighed myself this morning; the excess fluid is now just a little over 9 pounds.

I have supplied this update to my webpage because I have learned a valuable lesson. Maybe there are times when I should listen to the doctor. If I had not finally agreed to be admitted, I would not be writing this letter. I guess it was not my time even if I had that brush with death. I guess I need to stay around a little longer. So please remember that at time it is important to listen to the doctors. Continue to question, continue to research, and continue to advocate, but be open to the knowledge of others. Bless you all.

If you want news of any further developments, please send me an e-mail, and I will keep you posted. smbulloch@yahoo.com