I'm coming up on my 3rd transplant 'birthday' in August, so I decided to visit my old blog notes. The below was written 2 years ago and, obviously, never finished. It's been sitting in 'draft' mode ever since. I think it's time to post it.
I do not want to write this. I have put it off for as long as I as my OCD will allow. There must be an ending and I must write it even though I am kicking and screaming on the inside.
I have not re-read the last post I wrote about my transplant. I wrote it at a very difficult time and I don't want to relive it. I may read it again in the future, but not today.
Everything that follows may not be in the correct order, but they are the most pressing memories I have about the last two months in Nashville.
*****
I was approaching day 100 when I had to be admitted to the hospital for GvHD of the GI tract, ignorantly thinking it would be a few days stay. Being unable to hold food down or stay out of the bathroom required me to stay in the hospital for three and a half weeks. I was on IV therapy food during my stay and was finally allowed to eat chicken broth on Thanksgiving day. That will be a Thanksgiving meal I will never forget. I was dismissed from the hospital on December 5th and allowed to go stay at our hotel room. A by-product of the IV therapy and my stomach not processing and absorbing food as it should have was edema. The protein abulim in the stomach was not processing the IV food I was given so it remained in my body as 'waste'. Gravity pulls it to your lowest extremities so my legs were completely full of 'waste'. I could press my hands into my thighs and a complete hand print would appear and stay for minutes. It wasn't just a small indention either, it was a completely sunken handprint. My calves, ankles, and feet were much worse. My legs were so heavy I had to use my hands to pull my legs up onto the bed or lift my legs into the tub. I finally had to get a medical walker-type contraption to put around the toilet so I could lift myself up without help. Walking felt like I had a weight belt tied to my waste and caused my back to ache. As miserable as it sounds, there were times of comedy that helped me get through the physical burden. I could cross my legs while sitting up in bed and a 'valley' would remain in my feet and shins. I could also massage my feet and legs and 'move' the waste. It felt like playing with a water balloon with gel. My dad had came into town (when I REALLY needed him) and he would massage my feet for me. It was amazing to see how twenty minutes of him working on my feet could reduce its size by half. To treat edema, there were three things I had to do. Eat a LOT of protein (100 grams a day), wear compression socks, and keep my feet elevated. I knew coming into the transplant I would feel weak and tired, and internally exhausted until my body began to heal itself. I had not expected external complications - having to drag my heavy body around. The extended hospital stay did not help. I lost a great percentage of my muscle mass. My weight stayed about the same throughout the transplant; the muscle weight I lost was replaced with the 'waste'. When my stomach started working again and the fluid began to dissipate, I started measuring the circumference of my legs to track how much mass I was losing. In a week's time I lost over 22 inches in my legs/calves/ankles/feet. It was the first time in my life that I had skinny calves! To make matters worse, the CMV virus revived itself and I had to start harsh medicine again to combat it. Thirteen days straight. The name of the drug was foscarnet, however, my family and I created a few alternative names for it, fos-darn-it, and the 'f-word'. We are awful. The drug is very draining on a person's energy and it, coupled with muscle loss and the edema in my legs, had me silently cheerleading myself to do the simplest tasks. I would repeat the scripture, "I can do all things through Christ who gives me strength" over and over during my morning ritual to get ready. Some days I emphasized the word 'strength' and other day's it was 'all things'. Every day I emphasized, "through Christ". Walking into the clinic from the parking garage is about a 2 minute walk for a healthy person; it took me over five minutes as I had to shuffle along in house slippers. (They were the only shoe that would fit on my feet and still required me to manipulate the edema in my feet so I could squeeze into them.)
I spent a lot of time in the bathroom. Between recovering from the GvHD in my gut and the BK virus in my bladder, I went to the bathroom often and it was always painful. For many weeks, I would get up during the night every 30-45 minutes to use the bathroom. Getting a straight hour and a half of sleep was rare and celebrated. Weak internally (foscarnet), externally (edema), and just plain tired from never sleeping well had finally taken a toll on me. I was done. Tired. Ready for it all to be over in any way possible. Needless to say, I had prayed a lot during the journey but my prayers changed when I reached my limit. I prayed prayers I never thought I would pray. I asked the Lord for things that I never thought I would ask Him. I begged and pleaded. The bathroom became my prayer closet. It was the only place I could be physically alone, although here was no real privacy as the walls were paper thin.
And that's where it ended. Lots of memories came flooding back. I am so grateful that time passes and memories fade. His mercies are new every morning.
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