View Single Post
  #52  
Old Mon Aug 15, 2011, 12:10 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Marmab,

The safe level for biking is 60k or 70k. You have to be able to survive a bump to the head if you crash. I had a chart that listed the safe levels for various activities. I'll try to find it again. At levels below 20k (it varies person-to-person), you could be at risk for spontaneous bleeds. If your clotting factor isn't good, bumps can be a serious issue. So, you really want to be careful and avoid unnecessary risks.

I wish you could see an MDS/AA specialist sooner rather than later, because if your condition is immune mediated, there is a chance that cyclosporine alone could reverse everything rather than waiting for things to bottom out.

Lisa is right about the anemia. The heart has to work harder to get the oxygen to critical organs like the brain. If you are running, your legs need oxygen too. That's probably why they feel like lead when you are anemic. When I was severely anemic my heartrate got really erratic. At times it would exceed my max! It was also very easy at times to hit my max, sometimes even when I was walking. So, I really recommend wearing a heartrate monitor if you are exerting yourself so that you can pace yourself accordingly.

With regards to checking for CD4/CD8...When your doctor sent your BMB to pathology, he should have specified what condition he was suspecting. This would give the pathologists a heads up as to what to look for. Do you see anything mentioned on your BMB for "suspected diagnosis"? A lot depends on the expertise of the lab. That's why it is probably beneficial to have another BMB done at a Center of Excellence. It is not unusual to repeat a BMB when the first one looks suspicious. I had 3 or 4 before I finally got treatment.

As an aside, did your doctor run you through the gamut of tests (B12, folate, copper, AIDs, parovirus, etc.)? MDS/AA are diseases of exclusion, especially in the absence of cytogenetic abnormalities or blasts.

Hope this helps. Be careful out there!
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote