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May 12-18

This Week

Christopher G. hasn't added requests yet
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The past 6 weeks have been challenging for me.

 

There are many details about things that went well and those that did not during June. I will cite some of the major highlights.

 

It was becoming evident that my weekly percutaneous pleural fluid drainage procedures were not keeping up with the rate of pleural fluid accumulation. So I was increasingly short of breath. On June 2, I had 4.5 L of pleural fluid drained. On Friday June 4, I had another 4.5 liters removed. 9 liters total in one week. A “permanent” left pleural space drain is now in place. No more percutaneous pleural fluid drainages for now. Betsy has been trained how to safely manage this permanent drain to avoid infection. We are draining 1 or 2 liters of left pleural fluid every other day based on my weight. Unexpectedly, I “lost” 25 lbs of weight after the new drain placement, reflecting both reduction in pleural fluid and and a mobilization of chronic subcutaneous edema. This is very good. 

 

Friday evening, 4 June, through Saturday morning, I became very ill. Fever to 102F, short of breath, and extremely weak. This is being attributed to a bacterial blood infection coming from my bile ducts. I spent 5 days in the hospital. This has responded well to an IV antibiotic. Good news.

 

I have also had a variety of metabolic issues. On 26 June, I could not stop vomiting. I was admitted overnight to the hospital with a significant electrolyte imbalance. I responded quickly to the treatment. Various medication adjustments have been made. 

 

Similar problems to what has happened can happen again. I had a low grade fever yesterday. It resolved this morning. 

 

I am slowly returning to my usual abnormal health situation, which is an improvement. Fatigue remains a major issue.

 

On 2 July, I was notified that my MELD score has been increased to 26. I wish that it was 30. Nonetheless, this increases the possibility for being offered a liver. It would be a pleasant surprise to get a surgical call soon.

 

Overall, we have been having a very nice early summer. Summer Solstice was 21 June. Many of the trees and outdoor plants look very vigorous.

 

We continue to find things to enjoy each day. We remain grateful for your prayers, assistance and encouragement.

 

Chris and Betsy

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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