We all walk ancientrails. Welcome to the journey.

Kate

Written By: Charles - Mar• 12•19

Imbolc                                                                      Recovery Moon

A cold. Just to round things out, make sure I don’t miss any chance to boost my immune system. Kate, “Clusters of illnesses are common.” “Is that because the immune system is temporarily compromised?” “Yes.” Sigh. Not terrible, sneezing and such, mild malaise.  But. Enough already. Canceled my new workout appointments because I don’t feel well and don’t want to expose others. Next week.

tpn packKate will go to a 16 hour feeding schedule on Thursday. That will give her 8 hours of freedom from the nutrition bag and the pump. If she continues on with the tpn, next week she’ll go to 12 hours feeding, 12 off. That’s the final stepdown, I believe. Carrying her tpn pack with the nutrition bag, which is heavy, and trailing the tubing that connects it to her picc line, is made more complicated by the tubing that connects her to the oxygen concentrator. A fall hazard for sure. 8 hours of not having to juggle all that stuff will be great for her.

We saw her rheumatologist yesterday. A hell of nice guy, sweet. He told a funny 20190311_100818story. His teenage son took his cell phone and created a ringtone using rap music. He didn’t know. He was in with a patient, he said, when all of a sudden, “Then the motherfucker did this, and the motherfucker did that…” started coming from his phone. He’s a good enough guy to see the humor.

This fellow was on his windowsill.

Kate commented yesterday on how tiring it is to be sick. All the doctor visits. Schlepping the tpn bag, the portable oxygen concentrator, using the rollator. And, I added, the anxiety that each visit might bring bad news. This is in addition to the actual illness, the Sjogren’s, the malnourishment and weight loss, whatever lung issues she may have. This has been her life, acutely now since September 28th, and at a more chronic level for almost 18 months. It takes a strong spirit to stay centered, keep a positive attitude. And she’s done that. Most of the time.

On Thursday we see Dr. Gupta, the pulmonologist. He will have the results of the pulmonary function test she took last Thursday and his reading of the CT scan from her pneumothorax hospitalization. Two key and very important learnings for us will happen in that visit.

lungFirst, is Kate strong enough to withstand the surgery that would place the j-tube? My lay opinion is that she is, based largely on how she handled the hemicolectomy (removal of part of her right bowel) under the stress of all that had come prior to that with the bleed. Still, I do see Edwin Smith’s point that killing her to cure her is not the best course of action, so knowing her lung capacity is crucial. Gupta will tell us.

Second, and just as important for her future, is his reading of the CT scan. Does she have an interstitial lung disease? The pulmonologist at Swedish who ordered the CT thought there might be indications of it. I’m not sure what this means long term, but it could mean that there is a treatment for her breathing issues. Her rheumatologist said, “If there’s interstitial lung disease, I can treat that.”

So, no pressure.

The j-tube will improve the whole feeding process since it requires none of the sterile procedures of the tpn and uses gravity to move the nutrition.

Friend Tom Crane says his pneumonia has begun to ratchet down. Hallelujah.

 

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