New member of the AA club

[selina]

Hello,
I was dx in July 2010 with no issues except a bruise. I had a hysterectomy in May 2010 and was returning to my GYM for 6 week check-up to be released to go back to work and I asked him to check my blood counts due to the bruise. Plts were 14,000. I was admitted and had a Bone Marrow biospy. Test were confirmed. I got released for weekend and returned for ATG and cyclosporin. After 6 months of PLt and BLD transfusions, I am scheduled next week for transplant from my brother. I am scared and the thought of staying in hospital for a month is painful.

[cathybee1]

Welcome, Selina, sorry we are meeting you under such circumstances, but you'll find this group to be welcoming, knowledgeable, and supportive.

[Ryan Jay]

There is a whole group of us here who are in the summer 2010 dx club. We're pretty tight...send lots of private messages checking up on each other. I'm working on developing a secret handshake.

Anyway, nothing like spending my summer vacation in the Lahey Clinic with a three lumen PICC in my arm.

If you don't mind my asking, did you see any results from your ATG? Or was it a complete non response?

You'll find tons of first hand info on transplants here. I'm glad you have a matching sibling.

Keep in touch,

Ryan

[Lisa Z]

Selina-

After being in a hospital for only 10 days for my clinical trial, I can understand your feeling this way about the month in the hospital. But, look on the bright side. You will have all these wonderful professionals just outside your door. It should give you a good level of comfort.

Bring reading materials, a laptop for ease of communications, and focus on a quick recovery!

Once they give you the go-ahead, maybe you can even start to exercise - depending on the protocol of your hospital. I know at Penn, (in Pennsylvania), they really encourage that.

One month in the hospital, in return for a potential cure, really isn't too bad of a deal.

Good luck to you. You're heading in the right direction.

[selina]

Sorry it has been awhile but I forgot the website login. It has been 6 months since my BMT. If you think your done and back to normal after having one - wrong!!! The month in the hospital after the transplant went pretty smooth. Had some vomiting, balding, infection at new PICC site and a few other side effects but nothing major. Got out and had to return everyother day for labs. All the meds your on had effects on your kidneys and liver. Stay tired and winded. Got graft vs host twice. Now I'm considered chronic GVH and have to stay on steroids for a year. I'm HUGE!! Cheeks are in my eyeballs and I have humps on my back like a camel. But I"M ALIVE and for most days I can function with my family. I haven't had to have blood or plts since January before my transplant. YEA!
My doctor says it takes two to three years before everything evens out. Has anyone else had a BMT and when did you feel normal again? Selina

[Lisa Z]

Sounds like you've been through a lot, but as your doc says, it takes a few years for everything to be as normal as it ever will likely be. I guess the steroids are the culprit with the weight gain??? HOpefully that will begin to subside if the steroids can be reduced over a period of time.

GVHD I guess is to be expected. But if it is something that can be "managed", that is good.

What kinds of liver/kidney damage are you talking about? That seems to be a problem with many people, I believe.

Glad you are doing OK.

Lisa

[selina]

hello, on jan 11 it will be a year since my BMT and due to the GVHD, I'm still on steroids which have now cut off the bld suppy to my hip bone and now after I get done with everything, I have to have a hip replacement. Hurts all the time but I work through it. They want to put me on pain medication but I don't want that. Tomorrow I start chemo to see if that will help with the GVHD so they can start weaning the steroids.

[glitterandlace]

Hi, I was on the cyclosporin and steroids for chemo but didn't get a bone marrow transplant. It took me almost 2 years to lose the 30 pounds I gained and I too have the organ damage from the drugs. I also have that hip pain you are talking about. Mine comes and goes. Feeling back to normal I would say took about 2 years for me. But my face never looked the same after that. Not after the facial coarsening from the cyclosporin, and the skin getting stretched out from the steroids. But my toe nails and fingernails were yellow for about 2 years too.