Trials and tribulations of a patient in search of a bone marrow transplant

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Tuesday, June 10, 2008

Home Sweet Home...Finally

Steve is finally out of the hospital! He was released on Friday June 6. He couldn't wait to get out and was packed and ready to go when I arrived early afternoon. We said thanks all around and took lots of edible goodies for the staff on 4 Collins.

I encountered Dr. Agura in the parking lot on my way into the hospital. He said Steve was doing well, very well. Then he looked straight at me and said, "It's a miracle." Knowing what bad shape Steve had been in only a few days before, no one could believe how well he was doing. And that he was going home, home, home.

Steve had a good week-end at home with Lisa and the children. Then because of a "black mold problem" that was opened up just before he walked in the door, he had to come to Fort Worth for a few days until that is cleaned up. The doctor said not to go back for at least a week and to set up an air cleaner.

Yesterday was the first visit back to the clinic. No visible blast cells. Steven needed blood and magnesium. He still has his PIC lines to facilitate blood draws and transfusions. His Prograf levels were too high, more than double the target level, but that is the problem with regulating dosage with oral meds. Dr. Agura was so pleased when he talked to Steve; he said with reasonable caution, he wasn't placing any restrictions on Steve as far as public places. Just unbelievable. And optimistic. They couldn't do the bone marrow drill yesterday, but that is set up for Thursday with results back about a week after that. Then we will know more surely what is happening. We stopped at the pharmacy downstairs to pick up a six day supply of a prescription for a special mouthwash since Steve still has problems with the back of his throat. They told us it was expensive, but nothing prepared us for the $5600 price tag for 6 days of two spoonfuls a day. Steve said that is almost $500 per spit down the drain. Unbelievable. It better work.

On the way home, we went by Northpark to The Sharper Image to get a room sanitizer to deal with the above mentioned mold problem. Sharper Image is closing, all of them, everywhere. Everything is on sale and it should last about a month, but already it's a bit picked over. So if there is something you were dreaming of, now is your last chance.

Steve is sharp as ever, eating reasonably well, no nausea or such problems, although the throat is stil bothering him. He is sleeping well and has more energy than one would have expected. He has to eat a lot to put back on some of the weight he has lost. He hasn't weighed this little since Junior High. He's working on it. The doctor is suggesting butter, sour cream and milk shakes with peanut butter and jelly sandwiches on the side.

As you can imagine, we are cautiously optimistic (emphasis on optimistic). We know the road will probably not be smooth, but we can see the road now. Although he is not strong, Steve is not acting like a sick man. He is ready to get on with life.

And once again, we think of his wonderful donor and send thanks his way. Steve's nose is dripping a bit, not normal for him, and we can't help but wonder if his donor had allergies.

I hope Steve will pick up his computer soon and take over this blog so I can sign off shortly and turn it over to him! Thanks to everyone for all the good wishes sent his way.

2 Comments:

Anonymous LJ @ Fidelity said...

God Bless You, Steve. He has done so in countless ways already. I continue to keep you in my prayers. May the Peace of Our Lord be with you, Always.
LJ

June 11, 2008 at 12:49 AM

 
Anonymous Todd said...

Steve,

It is great to hear you are finally out of the hospital. Please post another update when you can. I hope you are doing better than ever!

Todd

June 25, 2008 at 3:04 PM

 

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