[HughHC]

Beth I would suggest a visit to Johns Hopkins in Baltimore. Dr. Stephen Gore is considered an expert in MDS. I am noit sure where you live in PA but it could be weel worth your while if you can get him to see Gore

[HughHC]

Did you go to MDA in Houston or the Orlando branch. I do know that MDA has a great hematology team but am not certain that the same level is available at the Orlando site.

I also have the Moffit option available in Tampa. I think that Tampa is closer to where I will be living but I may want to have a second opinion at times.

Thanks for the input

[HughHC]

Anne

Curious as to how you are making out. I realize that you may not have access to a computer if you are still hospitalized but you are in my thoughts and prayers. Pleas share with us when you can as to how you are progressing.

Hugh HC

[HughHC]

I first went to Johns Hopkins 11 years ago for my annual physical. Previously I had seen local MD’s nut never told of any abnormalities with blood. The first year at JH my CBC reflected below normal counts. The next year I had the CBC done again in PA and my counts were normal supposedly. The problem was that the lab technician was hungover and I suspect mixed up my blood with another patient or some such goof-up.

Every year since then my counts have been below normal but within a small range. I have had the bone marrow and biopsy which confirmed MDS. I am told that I have remained in low risk group.

I am 75 and other than joint pain ( last year had Total Knee Replacement) and fatigue seem fairly normal. I do have endurance problems but some of that has to be age related. I exercise regularly (cardio and weight bearing) in an effort to beat the fatigue but not really successful.

I currently live in DE but relocating to SW FL due to unavailability of suitable services for my challenged daughter. I plan to contact Moffit after relo but hesitant about rushing into it given the frequency of visits that many of you report. Currently I see my hemo once a year and supplement that visit with a local CBC here in DE. Since my count is reasonably stable I do not see need for frequent visits.

After reading many of the posts here I feel very fortunate that I am in the low risk category. I know at my age I am getting closer to the check out stage and while I do not look forward to dying I also know that it is inevitable. Where, how and when it will happen is the unknown. I cannot worry about it but do cherish each day as they come.

[Author]

Posts