My last doctor visit went well. The liver counts are down which is good. They started to go up when the doctor took me off the Tacrolimus (anti-rejection med) before I was suppose to have a "donor lymphosite injection" or "DLI" about 6 weeks ago. The DLI fell through, but while I was off the Tacrolimus I started to have elevated liver enzymes which was a sign I was getting GVHD of the liver. I never had a biopsy of the liver, but my doctor said he thought I had it in the liver. So they have been watching the liver counts closely and it has gradually been going down toward the normal range. That is good. All my other blood counts (hemoglobin, platelets, white counts and absolute neutrophil count) are staying relatively steady and in the normal to slightly low range. The doc and Toby, my PA are very pleased!
Jerry and I attended a "Stem Cell Transplant Survivorship Program" meeting with an Advanced Nurse Practitioner. We learned what to expect from day 100 to 2 years post transplant. The major things I learned is 1.) As long as I stay on the anti-rejection drug (Tacrolimus) my donor's healthy immune system is being smoldered from working effectively. This is being done so that I won't obtain a ranging Graft Versus Host Disease, but it also means that I have to be extra cautions with what I eat, staying away from sick people (especially come flu season in October), etc. because my NEW immune system is not up to par yet either in spite of my white count looking pretty good.
2.) I am at higher risk for getting GVHD of the skin if I get too much sun. I will always have to protect my skin for the rest of my life. I wasn't one to do that in the past.3.) The tacrolimus should continue till about 6 mos. post transplant, but that depends on everyone's own status. 4.) I could get GVHD for the rest of my life....ugh....but my chances significantly diminish past my 2 year mark.
5.) After day 100 I can start eating more fresh fruits and vegetables, except berries, strawberries and cherry tomatoes, buffet type meals and some other less significant meals. I still need to wash and peal the skins on many things very carefully. Yea I can finally eat a salad!!! 6.) I don't need to wear the mask all the time. I need to carry extra masks and only need to wear them if I am within two arms lengths of people or on an airplane flight. 7.) I still need to notify a doctor or head to the ER if I get a fever above 100.3 degrees or any unusual symptoms.
I am thankful for the little things this transplant has brought me including: longer and stronger nails than I have ever had in my life! Must be all the potassium and magnesium I take. The Tacrolimus depletes those elements in my body so I have to stay on those pills until I get off the Tacrolimus.
I also spend minimal time with hair care...washing the sprouts (I call my new growth) and putting on the wig or turban is pretty easy! I learned at the Survivorship Workshop that the whole body tan I walked out of the hospital with is called a "chemo tan". Darn, I had been pretending that it was due to the cells from my donor and that maybe he was a "Latin Lover"!! I have a tan even "where the sun don't shine" if you know what I mean!
The past two weeks (after my brother's funeral) were spent with my dear, sweet Aura. Aura was Greg's primary caregiver for almost a year and a half. Since she was out of work and my assigned sitter became ill, she gladly agreed to come sit with me for two weeks during the day! I think it was therapeutic for us both to spend the weeks reminiscing about our dear Greg. Aura and I jetted about Houston taking Greg's left over medical supplies to the Houston Food Bank and his wheelchair we donated to St. Dominic's Center. Medical Bridges is a neat organization that uses unopened medical supplies that can't be used here in the U.S. and sends them to impoverished countries. Great idea! They picked up Greg's remaining supplies today... Tracheostomy supplies, unopened peritoneal cleaners and diaper creams, etc.
Below is two photos of Aura and Me. One as we donated Greg's wheelchair to St. Dominic's Village.
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