T - plus 22, Mar. 30

I had my IV treatment at the hospital and saw Dr. Khouri this morning. The blood counts continue to hold strong. They have lowered one antibiotic and eliminated another and lowered the steroid one more notch. I am still low on the amount of anti rejection medicine, Tacrotimus, so it has been raised again. some continued tweaking and adjusting. He also gave a nod to allow a visit home over the weekend since traffic is lighter on the weekends and in case of emergency we are close enough to the hospital. It has been two days shy of a month that I left to head down this road. We will see how it goes. We are still at the hermit stage of staying clear of folks so no visitors please. We'll keep you posted. In the meantime we are celebrating the time at home. Hallelujah! We will still be keeping the apt for 2 more weeks since there is still a short term need for that. Then I think Dr. Khouri will approve our move back home.

T - Plus 21, Mar. 29

It's 3 weeks now since the transplant. During the night last night my blood clot came back so I am back on the heparin and probably will be for awhile now. Everything else is the same and so we keep going. They are gradually shifting me to oral magnesium to free me from the IV treatments. The Tacrolimus I'm on depletes the supply. This transition will allow me to move to a longer leash. Beginning next week they will start a series of 3 each of CT scan, PET scan, and bone marrow biopsy to monitor the progression of the transplant and how well it has grafted. That starts at about 30 days, the next mile stone.

T - Plus 20, Mar. 28

It is Wednesday and one of my worst fears have come to pass.  I'm bored! I did not have to go to the hospital and had my treatment at the apt. Then I had nothing else to do. I'm Bored. It's wonderful. I'll take it.

T - Plus 19, March 27

I have been out of the hospital for a week now. It has felt good. This has been amazingly smooth, all things considered as I listen to the  stories of other people. I have not needed any blood products, or neupogen shots. In fact I don't think I have lost more than 2 strands of hair so far and I was telling Lynne I need a hair cut. It's amazing what one can be thankful for. Today  I had my blood tests and results were good. The Potassium levels are back in range, I am off the heparin shots, and they have reduced the steroids from 8 to 5 pills a day. Also they taught Lynne how to do the magnesium infusion today (she did it like a pro) so we do not have to go into the clinic on Wed. or Sat. or Sun. and we will have some flexibility of space and time. It will have been 4 weeks since I have left home. I can't remember the last time I was ever away from home that long before. Saturday, hopefully we'll break that drought. The leash is getting a little longer.

When I was sick...

How things have changed. Ed, a Stem Cell Transplant recipient, some 60 days out tells the story of how he thought he would let his old friend come over to see him at home. He did the necessary asking about illness and said to his friend to come by. As they were visiting his friend shares the story of how he had recently visited another family in the hospital or their home and he found out they had TB. Poor Ed did not know what to do. He had invited someone to see him who had been exposed to TB. SCT recipients are first of all immunosuppressed, meaning we are susceptible to just about everything with little defense against what is out there. Secondly as the transplant progresses we lose all of our immunities we were given with inoculations and shots during childhood and later. By 1oo days or so we have to be re vaccinated for all of these. Ed was just beyond the 60 days. Ed thought he had covered all the bases. He was angry at his friend. I hope he is okay.

My reason for telling this story is there is a tension that is going to exist for awhile for all of you and for me. If you grew up in the church or are involved in a church this is where you learned it is good to go visit and say "hi" to the sick and the shut-ins. This is the place where people are more prone to hug one other and embrace several people over the period of a Sunday Morning or social gathering. It is one of the last place SCT recipients should go and conversely a hot spot for the spread of anything like colds, flues, viruses and yes TB. And then with holy and good intentions, of course you want to go to visit the sick, the shut-in and pass on the goodness of the holy gathering. Bless you for that. You certainly have Jesus' blessing.

So here is the tension. I, like Ed, must look out for myself. That means I must look upon all of you as possible carriers of even rare TB. It feels to me like I am being rude and offensive when I ask to be kept at a distance. I could even appear judgemental. I ask your patience on this. For at least the first six months I must look out for this myself. That will mean I will often be wearing a mask and perhaps sometimes gloves. I will stand back like I am the one with the disease to spare you the responsibility, for it is up to me and you have no way of knowing everything about the health of everyone with whom you have been in touch. Do you recall those "Perfect Attendance Badges" they gave out in school? There is another medical model that says if you are sick, stay away from others. There are not to many rewards or badges for that, but taking your flu or cold to work, or school or to others, or others in large groups also needs to be to be looked at, as possibly dangerous to others as well and not necessarily virtuous.

So I had to put this out there because in a few weeks I will probably be home and these issues will come up. I continue to covet your prayers and support and as the boundaries become more flexible I will let you know and we can reconnect.

T - Plus 17&18, March 25&26

Sunday went smoothly and Anna was a big help and Lynne had a good time with the grand kids. Thanks everyone. Monday I was in for my infusions. Blood tests showed I'm a little low on Tacrolimus, the anti rejection medication, so they increased it. They have reduced the oral steroids as well as the steroid cream. I also have retained too much potassium and they medicated to reduce that. Tweak, adjust, and retest and do it again. The other blood counts have come back very well though, some counts I haven't seen in some time. The best news is we can go home for the weekend if all holds strong. We'll take it.

T - Plus 16, Mar. 24th

Sat. went well and a pretty close copy of Friday. Anna and family came down from Dallas  and Lynne went with the kids to our place and Anna is staying with me through Sunday afternoon. I still feel a great deal of fatigue and sleep a lot. My appetite is coming back now and the taste buds as well. All in all, it looks like, stay the course. I'll take it, one more day.