Hello All,
Larry and I travelled to UNMC in Omaha yesterday for a follow-up visit with Dr. Sorrell. My dear friend Kelli met us there, as she often does. I can't beat her off with a stick, and you know what I don't want to. She is a beautiful friend that continues to support me endlessly, and she gives me so much hope, I love her very much. It is not every day you hear people say " I enjoy going to see my doctor ", but it is always my pleasure to see Dr. Sorrell. I always leave feeling more positive about things than when I walked in. Once again all of the labs were normal, but they are wanting to investigate the fungus that I had in my lungs when they removed that nodule in June. His new fellow became concerned that when I receive my transplant, and they put me on the medication that will suppress my immune system, so I do not reject the liver, this fungus in my lungs could get worse and cause me to become ill. Right now I am "healthy" and my body can fight it, but once I become immunosuppressed that may not be the case. I know I have cancer, but I keep saying that I am healthy because that is how I feel. So..............Dr. Sorrell agreed with the fellow that I could see the infectious disease doctors, if they would be able to see me yesterday, since we live so far away. So after a STAT CT of my chest with contrast, and a quick lunch, we were back in internal medicine visiting with them. Once again the fungus that was found in my lung, is some bizarre type or it could possibly be TB. Leave it to me to never have anything that is normal. Through some additional blood work and urine testing they are hoping to pin point it and get me on the proper antifungal medication. Of course the "best" way to diagnose the type of fungus would be a biopsy. :( My lesions are so small however it would be very tough to hit one, as I already know from previous experience when they missed a lesion twice the size in June. So I am not volunteering for that procedure. The CT of my chest did show some growth of these small lesions, so they are convinced it is still active, although they see some signs of necrosis (death of tissue). I know all of this information is somewhat confusing, but what it comes down to, if I was not going to have a transplant my body would fight it on it's own, and I wish that were the case. These infectious medical doctors work with transplant patients only and they are very cautious. I hope to hear some news today, however, some of the blood tests take several days. They did say with the proper medication these lesions would disappear within a month.
On a positive note, Dr. Sorrell does not know why I haven't been transplanted yet, because they are transplanting MELD scores of 22-24 now, so it is just a matter of finding a match of blood type, and body size. My score of 25 puts me right where I want to be. He said to expect the call any day. He said he has to get me transplanted soon so his son, my good friend, Tom Sorrell will stop bugging him about it. I just love their sense of humor, and I appreciate them both very much. I am blessed.
Please continue to pray for my friends Scott and Celeste Wells. Scott is a patient at UNMC receiving his chemo, so he can get his stem cell transplant. He is ready to get on the road to recovery as well, I know exactly how he feels.
That is all I have for now. I really hope the next time I send out a message it is to say they have a liver, that is my exact match, and they really need my body to put it in. Once again, what an amazing gift that will be. Thank you all for your continued support, I appreciate it so much. God has a plan for me, so I will continue to believe and follow with lots of hope.
All my love,
Trish
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