[mausmish]

Vicki,

I had a full myeloablative transplant at Johns Hopkins and was in the hospital about a month - 1 week before for the conditioning chemo and 3 weeks after until I engrafted. It was winter, and we live in a rural area, so I stayed in an apt. across the street from the hospital for about 6 more weeks. At first there were daily visits to the hospital for 4-6 hours to get hydration, potassium, testing, whatever but the visits gradually tapered off. I was fortunate to have no life threatening difficulties post transplant. The worst pain I suffered was mucositis the full length of my digestive tract for a few weeks - it hurt even with a generous amount of narcotics - this is common. The other big unpleasantry was that food tasted horrible for about a year - this is not so common. It all got better. I now have a little chronic gvhd - dry eyes and mouth and lichen sclerosus (itchy, thickening skin) on my back. I haven't had any steroids other than a topical Clobetasol cream and I haven't had any immunosuppressants other than Restasis eye drops and a topical tacrolimus cream for my back. I was very apprehensive ahead of time and much relieved that things have gone so well for me. My husband and I have tracked our experience in our blog, linked in my signature below. Unfortunately, I'm in the midst of changing servers, so it may be unavailable for a few days - it will be back up very soon though. Please feel free to email me privately if you have more questions or concerns. Talking with those who journeyed before me made my transplant much less stressful, and I like being able to pay that forward.

Karen