The Big Bumps in the Road

Retirement is nice, but you still have big bumps in the road, as I found out this past week. I found out my daughter has a blood disorder, and it will require chemo. My mildly autistic daughter is a warrior, and you see, we will bounce back together just as we have through all the other health bumps she has had.

My daughter, who is only 41, had a liver transplant last March due to having NASH. She sailed through the transplant and also had a couple of hernias repaired due to the ascites she had experienced during her three-year wait on the transplant list for her liver. She did very well and came home after a two-week stay in the hospital. We had a fairly uneventful, relaxing summer. However, her hemoglobin kept going low and required week-long stays occasionally in the hospital when her blood dropped below 7. The old liver pretty much ruined my daughter's kidneys. The talk was that she may be a recipient of a kidney transplant. She would qualify for the "safety net" transplant when kidneys needed to be replaced after the liver was transplanted. Yes, she would possibly become a two-time transplant recipient in the future. A stress test was done, as well as an echo, in preparation for her to be able to be on the kidney transplant waiting list. This was in September following the March transplant of the liver. Her heart, which had been fine pre-transplant, showed severe left ventricle issues. She was sent to one of the cardiologists, and they had an MRI of her heart done. Her heart wasn't as bad as the echo had indicated, so that was a relief. The MRI was in December. While I was sitting in the waiting room playing Solitaire on my phone, as I had done many times, I saw a phone call from the hospital, so I walked out of the waiting room into the hallway and took the call. It was her doctor. Usually, he My Charted messages, so I thought something must have been up. He said who he was, and then he said that my daughter's biopsy from a procedure she had done while investigating why she kept losing blood came back. She had lymphoma, specifically a blood disorder called a lymphoproliferative disorder, that she had only a 2 out of 100 chance of getting by having a transplant. He said that sometimes transplant patients get this and she would probably need to have chemo. I didn't hear the rest of what he said because I was in shock. I don't even remember hanging up. He called back about four days later and asked how things were and explained once again. After four days of crying on the inside, I told him that my daughter and I are going to beat this. The liver surgeon called later and checked on us as well. I could count on him to put things in words that made things sound better. He has an excellent bedside manner and has been a Godsend to me for my daughter. The liver surgeon got us an expedited appointment with the hematologist he wanted us to see since this doctor had worked with transplant patients before. Snowmageddon happened, and there was a Level 3 snow emergency on the appointment day. I cried to myself. We needed to go. I reluctantly canceled the appointment, and they could only give me an appointment five weeks from now. I texted my daughter's surgeon and explained the situation, and he again came through for us. We have an appointment on Monday. Thank God for this surgeon who was randomly on duty the night she went in to have her transplant. His calmness has helped us so much and he explains things to my daughter in such a good way.

I kept this all to myself and within the family, but on Monday or Tuesday, I told a few of my friends because I needed to express my feelings that I could not express to my daughter. One of my friends encouraged me to share my daughter's story. She said it may help someone else going through times like these. My friends shared that they were praying for my daughter. Me too, my friends, me too.

Later...