BMT Day +180 The next chapter: dialysis for life

The next chapter:  No more kidneys – dialysis

Shock and awe:  AML

First remission on chemotherapy

Nocardia infection from potting plants

One great feeling week in Vancouver

Relapse – 80 days in hospital

Jack is born

Near death from VRE superbug

Fortunate second remission

Christmas with Jack

Bone marrow transplant – 54 days in hospital

Complication of GI procedure – MICU detour

Intractable BK virus and bleeding

Home but not home, no way to live 

What an emotional category HC (mountain grade beyond classification) climb in the Tour de Teri.  Exactly one week ago, Teri had decided to give up the tour.  She was presented the chance of continuing with less pain and better quality after jettisoning her kidneys.  Then, what a rapid descent.  It has been done.

She is off the continuous self controlled IV narcotic, now on oral narcotics.  She is having expected back pain from the dying kidneys.  Her tummy is larger.  She ran a fever and had 8 blood cultures drawn.  She is putting out little urine through the nephrostomy tubes, as expected.  Eventually, she will not pee at all.

Her mood is decidedly upbeat.

Teri is at peace with her decision.  She is back riding the tour.  I’m still trying to cope with the finality of loss of organs, of being tied forever to a dialyzing machine, and of the limitations to our lifestyle. 

Our new normal. 

Dialysis

She has been dialyzed twice, once in her own room and once in the dialysis unit, for two and four hours.  It involves two large filtration units attached to high flow plumbing much like that for your washer.  The double lumen large bore Permacath in the right side of her upper chest allows simultaneous inflow and outflow of blood close to her heart so her entire blood volume can be cleansed 7 times over in a two hour period.  By altering the solutions on the other side of the membrane from the blood, they can remove varying amounts of waste products and precise amounts of fluid from her body.  The first day, they removed exactly 0.5 L or 1 lb of fluid.  The second day, twice that.  Her BUN (blood urea nitrogen waste product) came down from 50 to 35 to 24 (normal < 20) on successive days.  It makes a racket.  Teri feels tired afterwards.  She will do this at least 9-10 hours per week from now on.

Friends

Paul, Steve and Mary came to visit from Madison on Saturday.  Almost sounds like the folk trio Peter, Paul and Mary from our era “If I had a hammer, I’d hammer that BK in the morning … evening.”  We went to the museum together to see the Emperor Qian Long artifacts from his retirement pavilion in the Forbidden City and my father’s paintings. 

We received a great card from Becky in NJ – two penguins, one “I have to pee” (Teri), second “I’ll go with you” (everyone else in Teri’s vicinity).  Inside caption:  It’s true, all chicks like to pee with a friend.  Becky shares her reactions to the blog, asks what can be done from afar, tells interesting stories of hubby’s retirement, describes her daughter in college, and makes book recommendations (Female Nomad).  It gives Teri a sense that life goes on … elsewhere.

Teri received a second beautifully and intricately knitted hat from Joan (president of the Chicago knitwits association).  Teri’s first one – her favorite amongst all the many knitted hats she received – was swallowed up by the laundry monster, with no trace of remains.  She was too embarrassed to ask for another.  I was not.  She wears it like hair.