[MNladyslipper]

It has been a while since I posted and what a whirlwind we have been through. My husband was diagnosed in late January with MDS RAEBI. The doctors tell us he is very high risk because he has so much chromosome damage (14). They gave him a prognosis of 9-18mos. He started on Revlimid in Feb. It appeared to be working. Then in April he had an attack of diverticulitis. It was resolved by a week long hospital stay on antibiotics. They decided he would need surgery but wanted to wait until he was not in flare up mode. They told us in May he would need the surgery sooner rather than later. He had surgery on May 23rd. He had a week long hospital stay and came home to recuperate, some mild reactions - fever and cellulitis. Five days later I was taken by ambulance to Rochester - Mayo for pain in the abdomen. I was diagnosed with c-diff started on IV's and wait and see. After three days the pain was worse and they decided I needed emergency surgery to see what was up. My colon had ruptured and I had peritonitis! I ended up with a temporary stoma (3-6) months and a 10 day hospital stay. I came home on Wednesday. Then on Friday night, my husband was flown by helicopter to Mayo with severe chest pains. He had discontinued his Revlimid about a week before surgery and had just restarted it on Tuesday, so they thought he had clots in the lungs. When he got to Mayo his hemoglobin was a 6.8 - on Monday it had been 8.5. The good news is there were no clots and no heart problems. They said chemo affects the gut, the skin, and hair follicles. They think the intense pain was the chemo affecting the esophagus and put him on stronger heart burn medicine. They think this was compounded by the low hemoglobin. He was give two units of blood and then discharged the next day.
Long story here - he has a rare blood type because of the antibodies he has developed. Rochester - Mayo has their own blood bank - they only had two units of blood of his type left and we used them Saturday night. His hematologist doesn't want him to come in every week for a CBC any more. He wants him to hang on to as much blood as he can. They will not transfuse by the numbers anymore, but by symptoms. They told him to "listen" to his body. They said this really puts us between a rock and a hard place for transplant, because he will need between 30 & 40 units for transplant. So, what do we do now? He is afraid to listen to his body - he didn't realize last Friday he was so low and doesn't want to go through that again! How do we find more blood? We are afraid the MDS is picking up speed because of all the things that have happened recently. What could have caused such a drastic drop in his hemoglobin? His platelets are now lower than they have ever been 73,000. His white counts are way up over 2. He usually hovers under 1 and his neutrophils are usually around .1 - .3. It is hard to remain positive. Any help would be very much appreciated.