10/13/2024
Love all the love I get from everyone in the community. But it is really hard to be honest and answer the question on “How are you doing?” Or “How are you feeling?”. All who see me say “You look great” but behind the scenes I just doesn’t always feel the same as I look. There is always that on the spot decision do I still 5 minutes from their lives they will never get back or do I say “I’m doing well”. Tough call. Not sure what goes on in my thought process to give you the “I’m Good” or “the painful details”. The inner me looks at the face of the person who asked and think to myself this person is sorry they asked. Just me. So having said all that lets get into what going on so some of you are in the know. Well the transplant team/hemotology are leaning my issues may be from one of my anti rejection medications and I was on two. They took me off of one because of my issues. Since my liver is doing so well (confirmed by labs) it was easy for them to take me off of the extra anti rejection med. They also removed me from an antibiotic I was taking which I was scheduled to come off of in January and again they felt confident taking me off of this one early as well. They believe the anti rejection meds is causing my kidneys issues and have protein levels through the roof in a 24 hour protein test. This landed me a referral to nephrology for further checks on the health of my kidneys but they can’t see me till the end of November. Then I have Edema mainly in my left leg but know my right leg is trying to catch up. The swelling has reached a point where there is a lot of discomfort. My calf feels like a balloon that could pop at anytime. So my transplant team/hepatology believe that is from Proteinuria which is from, drum roll, too much protein in my urine. Oh and they mentioned the likely cause of the edema was issues with one of three things. Issues with the liver, heart, or ding ding ding the kidneys. We knew the liver was good. Had to do an echocardiogram to make sure it was working well and quickly got the ok that is was pumping well. So we are back to waiting to see nephrology at the end of November. When just that seems like a lot. Then there is an issue with my hemoglobin is low and I am Anemic. Always cold and always tired when I am not moving. Put a camera in my hand and push me out the door and I am good to go. For the anemia I am scheduled to see the Hematologist mid December. Ughhh have to wait until December to start digging into this issue. As it gets closer to sweater weather the farther away December is. Especially since I spend a lot of my evenings in hoodie and sweat pants as it is. Now for the crème de le creme. From my transplant I have a surgical hernia in my upper abdomen. Whuuuut! A surgical hernia? I feel like I have an Alien baby, I picture the Alien movie with Sigourney Weaver and that alien baby popping out of my stomach. So have a consult with Minimally Invasive Surgery right after hemotology referral to get my hernia repaired. So how do I answer “How are you doing?” Sorry for the long post but this is for my memory but there are lots of people that follow this page that truly care. Thank you to each and every one of you! I feel blessed to have you in my corner and love you all.
