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Jimbob
MemberDave, I did have reactions last year when I wqs getting numerous transfusions. The tylenol and benedrayl combination prior to any platelett transusions seems to do the job. Jim
MemberI had neuprogen prior to having gall bladder remove last year. Did not have any problems that I remember. Jim
MemberSo sorry about the loss of your father. Know that he is a a much betterr place and without pain. gather up good thoughts about him to keep him with you in spirit. Jim
MemberShellie, unfortunately, the docs are not likely to be able to tell you for sure what it is witjout a bone marrow biopsy and asapiration. It is possible that dad’s free is of what he expects it to be and that could be lessened once the docs can determine what it actually is. Also, pain can make one make poor chices. Either way, the docs need to know what they are working with for sure.
JimMemberBill, now that you decided to have a SCT done at the Hutch, take advantage of all they have to offer. They social seervices team is likely to have a wide selection of books, pamphlets, tapes and CDs to fill in the gaps you may have in your knowledge. I als suggest you have phye therapy lined up for after your release to prevent loss of muscle tone and endurance.
If your insurance company initially says no, appeal asap. This is not experimental but standardtreatment.
btw, my insurance co said it would probably run between $600-800K. I know they have exceeded that due to complictions but ther is no limit on my coverage, thank God.
Good luck to you. JimMemberThe spinl tap (lumbar puncture) was very easy. Very little pain from the lanacane neddle and that was it. only took about 15 minutes and 10 of that was prep time. Then 30 minutes of laying flat to reduce chance of headache. Doc said it looked clear but it will take a few days to get lab reults.
VRE test was with long Q-tip cotton swab just touching around the anus. No symptoms, did have number of other little problems that were not responding to common antibiotics and it is just something thye test for on a regular basis. Testing evry 3 months until 3 consecutive tests say all clear.MemberTara, some types of mds can lay dormant for years and allow a high quality of life. I also believe that proper nutrition, activity and attitude a among the key factors. Keep it up. Jim
MemberDave, When it gets tough, KNOW you will get through it and look back on it as not having been that bad. We are all pulling and praying for you. Jim
MemberCarrie,
I have VRE. Probably got it at the hospital! Did not have it when tested prior to admission but did when tested at clinic a few days after being discharged, They test every 3 months to see if I still have it or if it has “gone away”. If it goes , they will still continue to test every 3 months until negative 3 consecutive times. No treatment aas I am alleergic to any form of Sulfa.
Good part about it is that I don’t wait at clinic and always get a private room.
Today, for other reason, I ;have to have a spinal tap.MemberAlexa,
January 2, 2004, my family ws told that my CMML had suddenly become AML and, with a WBC of 385,000, I was not likely to even make it through the night. They did use apheresis and heavy chemo and I was able to handle a SCT on March 30, 2004. I have had a number of ups and downs bbbut I am CMML free and getting better every day. Don’t give up on your friend or on yourself.MemberKate, we are all pulling and praying for you and George.
MemberGreg,
I felt pretty good after about 30 days but that only lasted for about 2 weeks. Have been on a roller cosater since then. More ups then downs but not steady by any means. And recently my vision has gotten cloudy and weaker. Should have answers about that this wee. JimMemberI think Marsha said it: we will probably forget all of the rough things and bethankful to have survived a year or so after a BMT. I know I had a few really rough things happen but now I think it really was not big thing. If your partner is in pain or even just uncomfortable, whatever medication to get through it should be taken advantage of. Forget about the no pain no gain concept. After the BMT, loss of muscle tone and endurance will be a problem. Don’t push for too much but do get physical therapy to keep from losing too much and getting on the road to recovery. As things happen, try to keep in touch with us and other who are there for you.
JimMemberKate,
Hoping and praying for you and George that 2005 will be the year that you can look back on as the turning point. Make sure he knows that there are many people pulling for him. JimMemberLaural,
I do have a site at caringbridge that I registeered last week but have not done anything with. Compared with what Bill has done for Billy …..
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