Tuesday, September 8, 2015

1 yr post-transplant appointments

The weeklong appointments proved to be informing and interesting. It was the usual run-through of CT's, MRI's, dermatology, dental, eye, dexa scan, allergy, nephrology, pulmonary, echo, stress test, bone marrow biopsy, gynecology, cortisol stem test, fluids, ENT, 1 yr. vaccines, IVIG,  and consults with doctors. We had a few surprises; she has some chronic GVHD in two places that we were unaware of. Fortunately, it is asymptomatic most of the time. It can flare as it did in her mouth. She had sores in her mouth that looked ulcerative at one point, and I took photos of them. They eventually didn't hurt anymore, but didn't go away either. At least now, we know what they are. We can treat with an oral steroid gel when it happens again. Patients with cGVHD are at a significantly increased risk for developing oral cancer and should undergo an oral cancer screening at least once a year. Since oral cGVHD can look similar to early oral cancer, it is best to be seen by a specialist who is familiar with these conditions. Periodic biopsies of suspicious lesions may be necessary. Karly now has osteoporosis of the spine with a few other areas not that far behind. With all that she has been through with chemo, radiation, lack of calcium, steroids, this is not a surprise. The thing now is to treat it the best we can. With the lack of hormones in her body, we are adding something like a combi-patch. This will help with hormones and the osteoporosis. Some of the tests we were hoping would be improved like the arteries, ECHO, and the PFT, but they are remaining the same. This is okay. We have patience. Some were improved like her skin...she didn't have one spot of diseased skin for a biopsy....oh rats...but she let them do it anyway for research. She's just awesome like that. Her allergy testing showed she was more allergic testing positive to milk(again), and also to Timothy Grass and soy. She's also had some weird lip, tongue, cheek swelling when eating things she clearly isn't allergic to, yet, is she? Her blood work was looking very good. Her eyes are dry, but not thinking it is GVHD at this time. She failed her Cortisol Stem Test. She has adrenal insufficiency. She wears a bracelet to alert the public in the event of a trauma or stressed situation; she can go into adrenal shock as I understand it. We have an emergency dose at home and will carry one with us. She was trying to wean the hydrocortisone this past week, but going down with just the one increment caused her fatigue and bad headache and joint pain. We will try to wean next semester when she might have a break from school. Her MRI of the abdomen still shows very little flow to her kidneys. She did another renal ultrasound last week showing things are pretty much okay, at least they think so. However, since she clinically seems to be worsening, they have decided to do another bilateral renal angioplasty. We hope that this procedure will cause her blood pressure to go down and she can come back off of the 3 other drugs she's been put on. Her Cardiopulmonary Stress Test was pretty good. She has a mild aerobic impairment, she reached her maximum cardiac/cardiovascular capacity, and she has a mild diffusion impairment. All to mean her heart causes her to not go as far or as much as she would like to go. Things to pray for: the angioplasty goes smoothly, blood pressures return to normal status, come off other BP drugs, her weight will decrease, she will stop holding fluid, she doesn't get flares from GVHD, her food allergies go away, her body starts making cortisol so she doesn't have to take it anymore, and they find the right mix of hormones which will help several things. This almost sounds like a long list, right? In retrospect...this list is very short and manageable. She is grateful beyond words to be so much better. She doesn't seem to let these things get her down. She goes one day at a time and jumps, hurdles, or crawls over whatever she comes up against. God has been faithful time and time again. He will not fail her. She is a miracle! Thank you Jesus!