I'm also told that I could have graft vs host in my liver and that a biopsy might be in order. They call Dr. Tsahldar, on his vacation, he concurs that we stop the exjade, he said I should let Dr. Frankfurt know and see if she wants a liver biopsy. I do this via e mail, she always gets back to me quickly. But she gives me this, "well, at this distance I can't really say, you should come to Chicago for a office visit." She did not say if I needed an appointment for labs, bone marrow, or liver biopsy. So I emailed back asking if she could have the nurse, Jenny set it up as I have the first week in May off.
No response from Jenny, so I e mail her and she e mails back with a phone number that I can make the appointment at. Now I know that I would need to make appointments for any test or biopsy at that same time, however. no one told what if anything would be checked. So here I am finally realizing that I'm going to have to take this all on myself, and I'm not going to Chicago to do it. I made an appointment with a local ophthalmologist for my continual eye issues, I will follow up with Tasahldar in Green Bay on the liver/bladder issues, and I'm going to have to find someone to deal with my rectal bleeding/hemorrhoid issues. I would have left that out, but other people going through this need to know the things they may face after their transplant. No more asking the Dr. what do you think, just go and take care of it. I just kept thinking these many but minor issues would go away, and they do, but they seem to come back often. Ok, I'm done with my rant. As I type this I am reminded of the good, there are a number of deer sleeping in our backyard and these two are guarding the front door.
God Is GOOD
Scott
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| Sure sign of spring |
Hi Scott, we missed you at work today. Take care and we are thinking of you. Get well for tennis season! Steve
ReplyDeleteScott,
ReplyDeleteAs your page announces...it is indeed a roller coaster ride. I can hear the frustration in your voice, but I know you are definitely a fighter and will deal with this new freefall on the ride. The GOOD thing about GVHD is it protects you from relapse as well. The donor may be attacking your liver, but it is also attacking the leukemia cells as well...God knows that is a GOOD thing. I'm sure your good docs will get things under control with medication. The bladder thing could just be a typical infection that anyone can get. It's always difficult for us, because when anything happens we want to blame it on the disease/treatment. Hard to know. I had a torn retina a while back, and I was just certain the disease was affecting my inner eye. ALL the docs said, no way...the eye problem is just "age appropriate," which was another way of saying, "Hey, you're OLD. Your eyes are OLD. Shit happens!" Have a great day there...hope things are resolving. If you ever want to chat personally, my email is sherryjac2@mac.com Sherry
Scott-has it really been a year? That's a milestone that deserves to be celebrated. For you and donor Dan I can't wait for the five year reunion. God bless you. Karen
ReplyDeleteHey Scott. Stopping Exjade is probably the best first step. I was talking to my fiance here who took the Desfroxamine pump for iron chelation and he had bladder issues since that medicine you pee out. Exjade you move the iron out through your stool so getting rectal issues makes sense. So does the liver issues.... We'll see what the doctors say, but stopping the chelation drugs and seeing if most symptoms subside is my advice before biopsies, etc just careful watching of the liver enzymes. the iron is being pulled off the liver so its no surprise its getting pissed off. Is your red count high enough to try phlebotomy? I am doing that and while I have no side affects other than tired that day of letting go of a pint, my ferritin numbers don't seem to go anywhere yet....so this may take some years... ugh. stubborn, stubborn iron.
ReplyDelete