New Member - Golden, Colorado

[MtnGal]

I'm sure my story will sound familiar to a lot of people on this forum. On Nov 6, I went to the doctor to see if he could figure out why I was so tired all the time (not to mention the sores in my mouth, shortness of breath and rapid heartbeat. I'm a slow learner when it comes to medical symptoms!)

He took a blood test and I got a call the next morning saying "get to the hospital ASAP for a blood transfusion." Seems my blood was pretty much nonexistent in terms of red- and white-blood cells and platelets. Like critically nonexistent. Like "we really don't understand why you're still vertical" nonexistent. So I got a couple of bags of blood and met with a hematologist the next day. He did a bone marrow biopsy in his office, but couldn't get a very good sample (dry tap) so he admitted me to the hospital and I had another biopsy that afternoon. I was in the hospital until the 10th.
More tests and a final diagnosis of AA on the 21st based on cytogenetic tests of 3, count 'em' 3, bone marrow cells. Seems the rest of my bone marrow was stuffed with fluff or something.

Was to start horse ATG on Thanksgiving, but an emergency scleroderma case arrived the day before and they depleted their supply of the drug. STarted treatment on the 24. After reading the horror stories here and elsewhere, I was pleasantly surprised at how uneventful it was. A few hives which benadryl cleared right up and a case of the "burning bum." Hot, hot, hot feeling in my kinder which spread to legs and arms. That only lasted about an hour or so, though. Next 3 days I had no side effects at all.

Got out of the hospital on the 29th. ANC at the clinic the next day was 1000! Staying cautiously optimistic, as I know there will be ups and downs. Don't want to lose my luck by bragging as Alaska Native hunters would say.

Although this is my first post, I appreciate reading all your stories and knowing there is such a supportive group of friends out there to share my journey.

Joyce - 56, VSAA, 4 days post ATG

[ssdavi71416]

Joyce

Glad to hear you are doing well. ATG results vary significantly and hopefully your treatment will show results quickly. Best wishes

[TASHMAC]

Joyce very pleasing to hear that you seemed to have a similar experience to me with the ATG. I also suffered a minor rash so they increased my steroids and gave me benadryl. The benadryl really knocks me around. I finished ATG 2 weeks ago today.

My ANC levels remain low so I am slightly envious that you are at 1000!! Well done you

I had to have a platelet transfusion 5 days post completing the ATG treatment and expect I will need another one this Tuesday as I am noticing easy bruising now.

It is a frustrating disease as everyone reacts differently but we will all pull through. If you have any questions don't hesitate to fire away.

[MtnGal]

Well, we had a little decimal place "issue" so it was really only 100. But 450 as of today, so things are going in the right direction! I'll be so glad to be non-neutropenic -- I could kill for a fresh salad right now. Guess I could do all the extra washing, but just to be safe am avoiding the rabbit food for now.

Feeling extremely grateful for my progress, so far. Keep thinking about that other shoe in the rafters aimed at my head, waiting for it to drop, however!

Thanks for all your good wishes. The best to you all, too.

joyce

[ssdavi71416]

Just to let you know I have met 3 people locally that had ATG treatment 17-26 years ago and are still in remission. It is one of the things I keep in my mind during low times. Keep up the good work. Salads do definitely have an appeal when you can't have one.

Scott