Update on Larry

Check in time…

From: Marlene

Date: 8/9/2004

Time: 11:28:35 AM

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Thought it would be good to get this forum active again and ask everyone to check-in on how they’re doing.

We just got back from Hopkins today and John’s HGB is up to 11.2! So were going to stop the desferal and see if we can get the iron out with plebotomies. He’ll probably start that in September. He’s so happy. The desferal was a real pain and is probably contributing to the nausea he’s been experiencing.

We will be taking our first vacation in 3 years. We’re going up to Maine for a week. It’s a vacation from doctors, needles, work and home. Life is getting closer to normal.

DX SAA 4/02; High dose cytoxan 6/02; transfusion free 4/04.


From: LauraJaros@hotmail.com

Date: 9/28/2003

Time: 10:15:51 AM

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For some reason all of the symptoms went away by Friday night (the 26th). No visible blood, no burning. Dr never called for a transfusion so I am assuming (I realize that is probably something I should not do with a dr.) that the culture came back clear. I think he may have passed a small stone??? His father is prone to stones so maybe he had one too. I dont know. No one has mentioned at the doctors office about different types of red cells. I will ask on Monday. The Dr. did tell us he is very conservative. He said having transfusions now could cause problems now or later with a BMT(he has not had a BMT) . He said because of my husbands age and the fact he has no other health problems he does not need a transfusion yet. For now, I am just kind of taking it all in still. I have not ruled out a second opinion. I am going to go to the dr.’s on Monday with some questions, like "exactly when should I call him?". I know all of the obvious things, but for example, on Friday my husband was more tired than he has been since he came home. He had a hard time getting out of bed. His legs were worse than they have been too..No cramps, they just felt like he had huge weights on them. Should I have called?? the dr. made it clear that he is on call for certain patients all of the time and that Larry is one of those patients. His staff has been instructed to page him for us. And to me, the blood in the urine was urgent, even it was a very small amount, but it took the dr. and hour and a half to get back to me and the office was not very open to me at least talking to a nurse. He was just out of the office for a little while, but couldn’t some one at least talked to me?? For now anyway, my husband is certainly not going to be the one to tell me to call the dr. He did not even want me to call when he saw the blood. On Friday when he felt so bad he decided to go sweep out the garage. I guess he thought it would not be so bad if he could just do something routine. I know he is still in shock. Hopefully, tomorrows visit will be enlightening.