Probable AA diagnosis - confused

[kirag1964]

Mezoth,

Thanks for reaching out! I live in Mt. Airy and I'm back and forth to center city frequently. It's comforting to know that there is a fellow sufferer not too far away if I have any questions!

My doctor has told me to plan for a week inpatient - 1 day workup, 4 days for the infusions and a couple more days just in case I guess! And we have made the decision as a family that I should go in ASAP after my daughter's graduation, which is on 6/9. So it's looking like 6/12 will be my date!

She said I'll then need to lie pretty low for a while. The two things I'm hoping for is to maybe make our annual summer trip to our house in Southwest Harbor Maine - I can "lie low" there just as easily as I can here, but the logistics of the frequent blood monitoring may prove challenging. And I have my fingers crossed that I may be able to accompany my daughter to her college orientation in August. She's likely to be attending school in Colorado, so there we have the additional complications of air travel and elevation. So that may be too optimistic.

I truly hate to contemplate missing these things, but I'm telling myself that this is a temporary sacrifice for long-term health.

I was pretty darn symptomatic when my Hg was at 7.3-7.9 - difficulty with stairs, blood "whooshing" in the ears, heart palpitations - so I think that setting the limit at 8 is good for me. That might mean one or two more before my treatment, but maybe my blood will hold up better than that! And I'm hoping my platelets don't get below 15 at all, but I guess we'll see.

Good luck to you! I'm guessing that the first round of ATG you did was not successful and that is why you are doing a second one - so fingers crossed for you! Let's keep in touch

[mezoth]

Originally Posted by kirag1964

She said I'll then need to lie pretty low for a while. The two things I'm hoping for is to maybe make our annual summer trip to our house in Southwest Harbor Maine - I can "lie low" there just as easily as I can here, but the logistics of the frequent blood monitoring may prove challenging. And I have my fingers crossed that I may be able to accompany my daughter to her college orientation in August. She's likely to be attending school in Colorado, so there we have the additional complications of air travel and elevation. So that may be too optimistic.

I truly hate to contemplate missing these things, but I'm telling myself that this is a temporary sacrifice for long-term health.

I was pretty darn symptomatic when my Hg was at 7.3-7.9 - difficulty with stairs, blood "whooshing" in the ears, heart palpitations - so I think that setting the limit at 8 is good for me. That might mean one or two more before my treatment, but maybe my blood will hold up better than that! And I'm hoping my platelets don't get below 15 at all, but I guess we'll see.

As long as your doctor can get get the blood tests, you should be fine - they may rule out air travel (mine did) for the time being - but my doctor has allowed me to take trips to Boston as long as I arrange to get tests done as needed (still twice a week monitoring for me at the moment) and my blood levels are fine before I go.

The bigger complication is if you go SAA and need frequent platelet transfusions - I need one about every 10 days right now, and so that severely limits the travel I can do. I have to kind of time the transfusions to make sure my numbers are good before I leave on any trips, and should remain good for the duration of the trip.

Originally Posted by kirag1964

Good luck to you! I'm guessing that the first round of ATG you did was not successful and that is why you are doing a second one - so fingers crossed for you! Let's keep in touch

Yes, the first round failed - but we know why, sadly. I got the "transplant" dose of ATG, which is 1/10th of the aplastic anemia dose - so it was a medical error. This did not get caught until the workup for the second round of ATG, and there is a large change in procedures at Jefferson that is being spearheaded thanks to this mistake that should ensure it never happens to another person. The second round of ATG has affected me far more, in terms of general fatigue and complications, then the first round did - so I am cautiously hopeful that it is doing something.

[kirag1964]

Originally Posted by mezoth

Yes, the first round failed - but we know why, sadly. I got the "transplant" dose of ATG, which is 1/10th of the aplastic anemia dose - so it was a medical error. This did not get caught until the workup for the second round of ATG, and there is a large change in procedures at Jefferson that is being spearheaded thanks to this mistake that should ensure it never happens to another person. The second round of ATG has affected me far more, in terms of general fatigue and complications, then the first round did - so I am cautiously hopeful that it is doing something.

Oh no that's terrible! I mean - I'm glad that you have a clear explanation for why it failed, but that was a MAJOR error. Are you able to do hATG again under these circumstances, or did they need to use a different strain?

Best of luck to you and I hope that you start to see results soon! You deserve a break after all that.

As for me, so far my platelets have stayed right above that threshold - they were as high as 45 in mid-March (woo-hoo!), but now are down to 24. Could be normal fluctuation, or it could be the start of a more permanent decline, but keeping my fingers crossed that I can stay above platelet transfusion levels between now and early June. Best of all, my ANC is being amazingly resilient and that is what allows us to be this flexible.