Released!

Michael was released from hospital yesterday around 4pm. How does one express the joy of that one monumental step in this process? The day before, Michael had one more round of Cytoxan which is a chemo that is normally used for lymphoma or leukemia but also used in this study to make sure there is enough space in his bone marrow so that Joe's stem cell's can take and multiply. Yesterday, Michael's WBC (White Blood Count) went down to .4 (normal is 4.5-10), this is precisely what the doctors want to see, even though Michael's body is now void of defenses to fight infection. He was given a second shot of Neupogen to get those numbers up and he will continue to get these shots until those levels are safe again. Michael will have to wear a mask when out in public and either he or I will have to wear a mask at all times when we are together in our hotel room (or when we have visitors). During Michael's last day in the hospital, we were praying that he would not experience the same side-effects he had previously. I can happily say that he experienced minor ones, mostly weakness and low energy. One of the highlights of his day, which he could NOT wait for was the removal of his catheter. It had been in since the day of surgery and it was quite uncomfortable, Michael called it "torture". The nurse quickly removed it and angels were heard singing! :-) The day he was discharged, we had a host of people come through his hospital room with instructions. Dr. Leventhal came through to finalize the discharge and spoke with us for a bit. He is quite an intelligent man, a driven one who wants to make a difference and frankly I feel that he already has. We also met with the hospital social worker who was arranging things with our insurance company. The dietician came by to answer our many questions concerning Michael's diet. Michael will not be able to eat anything raw (i.e. fruit, veggies, sushi, nuts...etc) until his blood count is back to normal. They would like him to consume a high protein diet but limit his intake of sweets/sugar because of the continued potential side effects of his anti-rejection medications. It will be just as important to watch his salt intake to avoid water retention or increased blood pressure. Irma, who is Dr. Leventhal's RN and who has been our contact during this study came by to go over Michael's medications, answer our questions and instruct us on how to keep track of all medication taken, body temperature, blood pressure, fluid intake (3-4 liters of water/day) and urine output. I truly like Irma, the best I can describe her is a "constant", she exudes balance. A smart woman, with a sense a humor, a friendly smile and precise. After Irma left, the Pharmacist came by to review again each of Michael's medications. He patiently went over each medicine, explained what it was for, potential side-effects and answered our questions. Finally, Michael's nurse came by to review our discharge papers. Pages of them! We had been so excited to get out of the hospital all day and now we were just exhausted, so much to process but all so appropriately crucial. We also had two special visitors yesterday morning. PATIENT #14 and his DONOR! Michelle was the donor for Larry, she found my blog and emailed me.  Her email heading read "Been there and am still there". What a huge surprise, right?!? We both were so excited to have someone who was currently going through this study contact us and share their experience. Michelle donated her kidney to her fiancé, Larry on October 27th. They are both from Kentucky and were as well staying in Chicago until Larry was released to go home, which will be today! I'm so happy for them! Larry had known he had "bad kidneys" since around age 18. Slowly they decreased until two years ago his doctors encouraged him to start dialysis. After careful thinking, Larry choose to wait as long as possible and stay away from dialysis. This past January/February, Michelle (who is a nurse) found Dr. Leventhal's trial study and contacted his office. After going through the same process we did, they were accepted and cleared to have the surgery in October. Larry, who is not only a fighter but a gentle man with happy eyes and a smile that instantly makes friends went into surgery feeling the damage of the chemo and radiation as well as ongoing kidney failure. He shared with us that he came out of his surgery feeling GREAT! He had not felt that well in 30 years! What a wonderful blessing for Larry! He had, like everyone else a road to recovery that had to be traveled but the bottom-line is that he is doing well and does not regret being part of the study. His decision to do this study still stood strong, even knowing the challenges, pain and suffering his body went through. Michelle is one incredible woman, not only did she donate her kidney to Larry but she also helped care for him during his 5 week recovery period. Michelle is a petite woman, soft spoken, beautiful, smart and so in love with Larry - it clearly shows every time she looks at him. My mind can not conceive that not only was she the donor but she was also recuperating from her own surgery but yet she found the strength to take each step with Larry, Michelle is a true hero. I wholeheartedly wish and pray the best for Larry and Michelle. A new life, full of joy and health. Michael was finally released and we took a cab back to the hotel. He immediately went to bed, took two pain killers and slept for a couple of hours. After waking up, we went downstairs to Joe and Heather's room to have dinner. Michael ate fairly well, I was impressed! I have to say that Michael's kidney is working well, he woke up about every two hours through-out the night to use the restroom. He is still unsteady on his feet and I am his shadow. Today, Michael is doing much better. He has been resting on the sofa watching TV and we are about to go for a walk and then have dinner. Please continue to pray that Michael's bone marrow will accept Joe's stem cells and that the crucial "hybrid" system will manifest itself in the coming weeks.

Where clinical study was held....Michael's room was 1001.

Michael with his night nurse, Allison.

Medications to take daily (Mostly Anti-Rejection and Anti-Infections)

Me ~ Larry ~ Michelle

Larry ~ Michael ~ Michelle

Medicated gauze strip removed from port site.

Chocolate Kidney's for Joe

Thanks Joe!

Michael had these briefs made for Joe ~ "I'm Glad He Only Needed a Kidney"

5 Days Post Transplant. Long days, long nights but time goes by regardless of where we are or what we are doing. You are not alone, and neither are we.


God's blessings.  Lilly :)