Kidneys
Last Tuesday, Teri’s creatinine level went up precipitously to 3.2 indicating more kidney dysfunction. [Dialysis was mentioned.] After reviewing her course and her medications, it seems most likely that it is the result of the intractable BK virus not only causing bleeding from the surface but deeper kidney damage. It has been going on nearly four months. We began administering IV fluids at home. On Friday, we the level was back down to its previously elevated 2.2. We breathed a huge sign of relief. Teri spent four days in the Day Hospital this week including IV red cell transfusions, platelet transfusions, IV immunoglobulin and a paracentesis. She will need a nephrology consult.
Teri’s thoughts
It has been a trying week for Teri, both medically and psychologically. She has asked … “Why me? Why do I have to carry such a burden? Why does something else always have to go wrong happen? She sobs in private. She tells Peg that she is pushing on because of me. She tells me that she couldn’t do it without me. She tells me that she loves me, that she couldn’t have persevered without me. Yet, as I struggle too, I still feel that she is remains the mentally tougher of the two of us. She keeps up a good front when you call, but she struggles at times.
Alopecia
She has not had hair regrowth in six months. Generally it has come back in two. We are beginning to worry that it could be permanent alopecia. Teri has wanted to be simpatico with Ben – and shaved her head proactively to match his baldness. Teri takes this possibility with relative equanimity. I look at the literature and yes it can happen post-BMT, possibly busulfan-related, I attach these articles to Dr. H. She says “Let me get a new wig.”
Dad
Dad still insists that Chinese medicine will cure Teri although he is thinking of leukemia, not the complications of BMT that we are dealing with. He wants my cousin’s wife to return. We discuss the fact that I’ve spoken to Chinese AML experts at Taiwan National University, Hong Kong University and Ruijin Hospital in Shanghai about whether there are specific Chinese medicines that can serve as an adjunct in patients with AML. None, I was told. Our team has asked us not to mix Chinese herbs with her regimen at this time. To Teri’s chagrin he calls up my cousin’s wife and tries to schedule her to come.
Last night, the light went on in our bedroom at 1:30 am and it was my father, dressed, intent on telling us, “Teri will be cured.” He means to be helpful and thinks positive thoughts, if not always at the best time of day.
Friends and social life
Our limited in home social life has had special effects. Even though we can’t go out much, we do see friends and family who come to visit and help. What we lose in volume of interactions, we make up in depth as many many have stayed with us, and shared their stories. It has led to some deep, and at times existential discussions. It is amazing what we all have to deal with individually. We also learn about how others cook and stay healthy, even learn about our own house. Terri Lin showed me how the tray under the filtered water tap on the front of the refrigerator pops out. Never knew it. Peg introduces us to Arnica gel to help heal bruises and it has dramatically reduced the 3 week old purple bruise on Teri’s chin incurred from her fall.
Elena was going to come and cook for us this past Wednesday. However, Teri had a sudden craving for Korean BBQ (Kalbi) and we spontaneously went out and ate ‘Seoul’ food with Elena, Paul and Peg. It hit the spot, but wore her out. Yesterday, Kok Peng Anna and her spry 90 year mother came from Madison and brought a Chinese beef soup and noodle dish. Lily from Columbus sent frozen bing zi, jiao tzi, and spare ribs by overnight mail.
I see a new platform combining socializing and support, friends lining up to come, visit and cook! Sign up sheet: ________
No comments:
Post a Comment