Today was a day that in all was one of progress but in a declining manner.
In the morning one of Laura's team of doctors noticed, and was alarmed by, the difficulty she was showing when she ate, went to the restroom or simply moved. After asking is this normal and she said yes, he had asked for another string of test to see if they could understand WTF was going on.
There was then some answers as well as more questions. It appeared that she did not have a fungus, common in CF patience, and was most likely combination of chronic rejection and pneumonia. Another ultra-sound did show a DVT (deep vein thrombosis = blood clot) in her calf. She is now on blood thinners to treat this. This was much better then the pulmonary embolism that could have been.
Another result of all of this was her being place on high flow oxygen. This was new to us. This is a machine that warms the air, humidifies it and them runs it through a hose that is 3/8+ wide. Significantly wider than a normal cannula. This seems to be helping. Eating, resting and simple movements do not cause major coughing attacks.
Given all of these issues, we were told that they placed Laura higher on the list. The algorithm is not shared and the doctors don't really understand it. The larger the number the higher you are. We stated at 41 yesterday and are now at 46. Progress? Yes.
We will be at at Chateau Parnassus (UCSF) until next week. If we can stabilize functions then we should be able to go home on IV antibiotics. If not we will continue to figure out how we can slow the progression.
For those reading this that are going through this process at UCSF for the first time, the team is AWESOME. They are the best of the best. Our confidence in them has never wavered. We are all participating in the most complicated transplant done. It is crazy to think that a heart transplant is easier than a lung transplant. Be assured your team is doing everything possible ALL of the time, 24/7.
To our friends and family. Thank you for the cards, comments, texts...etc. They do help, they mean the world to us.
We love you all.
Cheers,
The Z's
Hi, We are friends of Anne & Marty since college days. We still live in New York. Anne has kept us informed of your CF journey. So sorry to hear of your setback, but glad that positive things are already happening. Thanks for the blog, and your positive attitude. You are in our thoughts, and prayers continue always. Sending much love, Sue & Frank Geiger.
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