Yesterday was a 13+ hour day and we arrived home at 9:30 pm.
It began with our inaugural day at Fresenius Dialysis Center, downtown 1.8 miles away from home, adjacent to the old Schlitz Brewery. She was placed in a large open, sun lit room with 8 other dialyzed patients. She is apparently still in the adjustment phase to dialysis. Dialysis definitely perturbs ones systems so we are told and Teri is now experiences profound cold (4 blankets) and fatigue during and after the dialysis. She also experienced nausea and diarrhea yesterday, but those is probably separate. Her ‘numbers’ reflect that the blood is being cleared of waste products.
The day continued at the Day Hospital with lab tests, antiviral foscarnet infusion which expectedly dropped her calcium level and required an additional 1.5 g calcium infusion afterwards. She also received IV antifungal caspofungin to treat the yeast infection on her line. She also received red blood cells. She also had her PICC line removed – see below. She also had a regular IV placed in her wrist. This IV can only be used for two days in a row because of irritation caused by the caspofungin.
Another bump. She had a low grade temperature of 100.8° F after dialysis this past Monday. Cultures were drawn and on Wednesday evening, she was confirmed to have a common skin yeast Candida colonizing her PICC line. Since this could lead to a particularly serious sepsis (blood infection) that I’ve witnesses in children, after 6 months and 12 days, the PICC line (right elbow to above the heart) was removed yesterday. Actually it is quite amazing that this triple lumen tube was free of infection for this entire time. It is possible that her poor dietary intake without the requisite high fat content did not allow her to absorb adequate amounts of posaconzaole (anti-fungal). She may also have taken less than the full two teaspoons.
Her nephrosotomy tubes are still passing blood, about double the threshold volume that we need to reduce it below in order to have them permanently removed from her back.
Teri lost functional ground while in hospital for a week to get her kidneys embolized and dialysis initiated – she was discharged last Monday. She, for example, has difficulty getting up from a chair without help. She is back to a walker full time and walks deliberately and hunched over. I try to correct her posture. She is having abundant abdominal cramping and some diarrhea – she whimpers. Her body simply doesn’t feel good. Her energy and mood are both at a low ebb.
As I plot out her next two weeks, she is in the Dialysis Center, Day Hospital, or BMT Clinic 17 half days out of 28 half days, leaving only has two fully free days per week at home.
Our new normal.
Teri just told me that she ‘feels totally wiped out’ by the last several days of dialysis and Day Hospital stays and would prefer that you didn’t call but rather e-mail her or send cards for the next week until she regains her strength.
We are now overwhelmed with evaluating choices of how and where to do the dialysis. The choices are: 1) In the Dialysis Center 4 hours 3 times a week, 2) In the home 2 hours 5 days a week – much more costly, requires plumbing changes, and 3) In the Dialysis Center, 8 hours 3 nights a week – a dialysis sleepover.
Our MCW insurance pays 65% of the ‘standard’ costs (estimated $55K/year) beyond the deductible and up to a maximum out-of-pocket. At either the 30 or 90 days, Medicare will come in to play. It is difficult to get precise figures for out-of-pocket costs. Coverage will vary for each of the three options.
Daunting.
Work decision .
I am confronting a decision about my job. I had anticipated by this point of her course (185 days post transplant) that Teri would be well on the way to recovery of function or in a stable pattern. If at least stable, then I could anticipate her support needs on a week-to-week basis, schedule commensurate help and resume work. But neither has transpired. Each week seems to bring new medical challenges. We are not yet on a steady recovery trajectory. Should I return to FMLA temporarily or should I begin to work part time … ?
Friends
Thoughtful packages and cards arrive and provide momentary encouragement to Teri. I find them to be a helpful reflection of what we are experiencing. They reflect hope, our struggle and determination, our family strength, and admiration for us.
People constantly ask what they can do for me. I am touched by all the concern. I am so mired in this endless struggle, that it is one question to which I am at a loss to answer. There is so much need, and yet so little one can actually do in the face of such overwhelming needs. Perhaps lunches out to break the monotony … I feel I am weary and losing my resourcefulness …
Travel memories
When Teri is not sleeping or dozing during her treatments, she is choosing musicals to download to her iPad and I reminisce about our travels together, something we had hoped to do more of.
During our trip to Italy in October of 2009, we traipsed around Venice, Florence and Rome walking 10 hours one day in a huge circumference. In Venice, someone told us that Florence was famous for a local fare fiori di zucca pastellati, batter fried zucchini flowers. When we arrived in Florence, we asked for it at a number of cafes and restaurants but couldn’t find it. When asked, the proprietors of our ultramodern boutique hotel thought it was out of season. As you get fixed on these little fantasized desires, they tend to grow upon you, so we were naturally disappointed. Then one morning, at breakfast, the hotelier brought us a present, a small grease-stained bag filled with fiori di zucca pastellati. An unexpected gesture. A wish fulfilled. Delightful! Delizioso!
Teri’s lesson
As the faculty advisor for the local APAMSA chapter, Teri and I hosted 34 Asian American medical students to welcome the incoming 1st year medical students. It was not great timing since Teri was not feeling well but it was too late to change the venue. She dutifully laid supine on a recliner near the door and welcomed them. They brought all the food because my hands were full and I was unable to grill as usual this year.
I overheard her tell one medical student whom she perceived to be arrogant that it was not about where the medical school you attended was ranked on U.S. News and World Report, it was about what you achieve with your career, especially how much passion and compassion you demonstrate.
Life is full of Teri’s lessons.
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