Hi Richard, Well, your giving me more credit then I actually deserve. I lived in that plastic bubble for seven months, and this would be my first kidney transplant not my second. My first was the bone marrow one. All of the blood transfusions were done for and directly after my bone marrow transplant, and so far, more then twenty five years have passed and I haven't had anymore.
As far as dialysis goes, you just have to sit there to stay alive, it is a small price to pay, don't you think? I don't know, maybe I follow that ever ready pink bunny around. [?][?] 18's Marty On Mon, Feb 16, 2015 at 12:22 AM, Richard H <[email protected]> wrote: > I agree with totally. Since I am inly taking 300mg Gleevec I am presently > experiencing a different set of various minor side effects. Everything so > far is minor so no problem. If I start needing help maintaining my > Hemoglobin I would certainly want to take. I think I was taking about > 40,000 units a week. I gave myself the shot which was a whole lot better > than spending 6 hours every three weeks receiving 2 units. I can't wrap my > mind around how anyone could endure a BMT with at least 3 months in a > bubble, 96 transfusions during that period, dialysis, , a kidney > replacement, more transfusions, more dialysis, and are preparing to do a > second kidney transplant. You are a miracle in progress, and that is why > you such a valued member of this group,. > > 18's > > On Richard H. > > Sunday, February 15, 2015 at 7:32:08 AM UTC-6, wa2yyx wrote: > >> Hi Richard, >> >> Just because it didn't work (Procrit/Epogen) for you then that doesn't >> mean it won't work for you now. That should be discussed with your doctor. >> There are a lot of contributing factors so you can't really be sure until >> you have that discussion with your doctor. Possibly you weren't given the >> proper start up dose? Who knows? >> >> Remember, that it may take a week or more for it to start working. If it >> does it sure beats a transfusion. >> >> Yes, I am anxiously awaiting that phone call, hopefully soon. >> >> 18's, >> >> Marty >> >> On Sun, Feb 15, 2015 at 12:26 AM, Richard H <[email protected]> wrote: >> >>> Thanks for the info. While I was having my trials with Gleevec, I >>> did use Procrit/Epogen and it did not work for me. I agree that it should >>> be tried before doing transfusions. >>> >>> 18's and I am getting excited to do a "Happy Dance" when you receive >>> that phone call. >>> Richard H. >>> >>> >>> On Saturday, February 14, 2015 at 6:38:25 AM UTC-6, wa2yyx wrote: >>> >>>> Hi Jeanie, >>>> >>>> Life is a complicated process. >>>> >>>> Having hemoglobin counts under 8 is a "hard rock" to chew on. I know >>>> because my usual hemoglobin counts are usually under 10 but since my >>>> kidneys no longer produce the hormone that goes into the bone marrow to >>>> help produce my hemoglobin my doctors give me a shot of either Procrit or >>>> Epogen (usually epogen because it costs less but still does the job it is >>>> designed for) to help my hemoglobin rise. With those shots my counts get up >>>> to eleven or so and last a couple of months. However your hemoglobin level >>>> has to be monitored because to much epogen/procrit can cause a stroke. >>>> >>>> In my case it may be different because my kidneys are what is causing >>>> this problem and as soon as I receive a kidney transplant the kidney should >>>> hopefully take care of this problem and relieve me of any further procrit >>>> or epogen. >>>> >>>> Until then I must live on a complicated sky walking wire. If I were to >>>> get any blood transfusions then my antigens may become more then zero which >>>> they are now in spite of having 96 blood transfusions during and right >>>> after my bone marrow transplant which was more then 25 years ago, which is >>>> not the best result for a kidney transplant. >>>> >>>> However all of my doctors are amazed as to why I am still zero antigen >>>> level with all of my previous blood, platelet, and globulin >>>> transfusions/infusions Sometimes things may come back to bite me in the >>>> Azz, but hey, at least I got these 25 years so far. >>>> >>>> This seems to avoid any blood transfusions, but everyone is different >>>> so why don't you ask your onc about this? (a regimen of either procrit or >>>> epogen) >>>> >>>> I mean how much have I learned by going through all of this? And how >>>> much more will I be able to learn by going through a kidney transplant? I >>>> hope a lot more for a long time. >>>> >>>> 18's Jeanie and everyone else, you just keep on keeping on things will >>>> get better. >>>> >>>> I love all of you! >>>> >>>> Marty >>>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to CMLHope-u...@ >>> googlegroups.com >>> For more options, visit this group at http://groups.google.com/ >>> group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/d/optout. >>> >> >> -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
