It's the 14th of September (Tuesday a.m. if that's too hard to calculate this early in the morning :-) )and I'm still in the hospital. I've lost the bet I had with Lee about discharge. I said I'd be out today and he said Friday the 17th. Wow! I don't think I mind losing my part of the bet but I hope he's wrong too and I'm home way before Friday!!!
I am still hooked up to my chest tube and the fluid (or as I call it - pond scum) is flowing into a plastic box that measures how many units are coming out. Saturday through Sunday afternoon produced 210 units of fluid. They said they will be happy when I am producing around 20 - 25 units in that same period of time. Well that's a big difference :-(
I asked why I'm producing all this fluid and the explanation was:
- Everyone has some fluid in their pleural area
- It helps lubricate the lungs as they expand and contract in the cavity
- When there is infection or inflammation present, the cells produce more fluid to protect the area.
- I developed a fungus - and no one has a clue why except these appear frequently after transplant
- The fungus irritated the lining of the pleural area so the lining cells kept producing more and more fluid to protect against the fungus.
- The extra fluid didn't help get rid of the fungus. Instead, all that fluid build up was now pressing into my new lungs and not allowing me to get good breaths because my lungs can't expand or contract from the pressure.
Well, here it is Tuesday (I know it's really early!) and the fungus is still in the fluid - thus my loving nickname of Pond Scum!
That was problem number one....
Second problem was the biopsy results from the bronch. It came back showing that mild rejection. By itself that would not usually merit a trip to the hospital but combined with the other stuff going on the docs thought it would be smart to deal with it in-patient also.
Since I arrived on Friday they have been giving me large IV doses of a drug called Solumedrol. My explanation of Solumedrol is that it makes Prednisone look like baby aspirin! It's much stronger than Prednisone and its side affects are much stronger also! I am wired for sound!!! That's the major side affect. Maybe that's why they won't let patients administer Solumedrol from home...
The rejection is partly showing up in my body as lower oxygen saturation numbers (93-96 percent vs. the 98 percent I had right after surgery). The other symptom is shortness of breath. It is really noticeable because I am getting out of breath with very little exertion. That is not the same as when I was walking 38 laps in the step down! To be honest, I really don't even know how they are treating the rejection unless some of the drugs they are giving me for other things are supposed to be treating this too!
On a good note...I got my stitches and staples removed yesterday. One of the Physician's assistants was looking at the incision and asked why the staples weren't out. She said if she could get the doc's permission she'd take them out yesterday. When I ran into her later in the day and asked if she got the OK, Lee (her name) said she never heard back from the doc. Lee asked one of the transplant coordinators who was standing there if she thought the staples should come out. Emily (Trans Coor) calculated the weeks post transplant and said absolutely yes! Management decision was made and all the staples and stitches were out within an hour. The three of us (Lee, Lee and me) tried to calculate the number of total stitches I have in my body as a result of this surgery. Remember that almost all of my stitches are internal - along with the wire that is tying my rib cage together!
I might have more stitches that the average patient because of my 'designer lungs'. Dr. Lin needed to cut the donor lungs down to fit my chest cavity. That resulted in more stitches! Then there are stitches binding the lungs to my airway. Then there are the stitches that close up the chest cavity that was opened during surgery. And of course there are all of the miscellaneous stitches that Heaven only knows why they were done!
All told, we were estimating at well over 1,000 stitches but we'll have a better idea after talking with the surgeon. I'll update you on our revised number when I get it!
To round things up....the doc wants me on a few more days of Solumedrol and I have to keep taking the fungal medicines until the fluid is clear. I think we are looking at a Wednesday or Thursday discharge. Now I have not decent reason for picking those days except it means I won't be discharged on Friday like Lee's wager stated :-) I'll let everyone know the real discharge day when it arrives!!!
Take care and hugs to all!
Lee, Wendy and Missy