Second Transplant

In between transplants, I was advised to lay low and rest (as I was severely immunocompromised and weak).  In those three weeks, it was hard to enjoy anything knowing I was going to have to leave again for yet ANOTHER transplant in Arkansas.  Before leaving, I got MORE bad news which was becoming a trend.  The first transplant did not fully work.  I still had an M spike of 2.7 which is high.  This news was utterly heartbreaking.  Was I going to survive?  Nothing they threw at it was working.  I was beginning to think my timeline of 2-3 years was going to be shorter than expected.  Every time I tried to be hopeful and think the best, I would be delivered more life or death news.  I couldn’t take any more bad news.  They decided when I came back, they were going to do a more intense transplant which they reserve for special cases like mine.  It was called a BEAM transplant and it contained melphalan along with three other powerful agents.  So, they said, it would likely be even harder than the first.  That was difficult to grasp.  It was even more difficult knowing that I wouldn’t even be slightly recovered from the last transplant before being hit again.  Saying goodbye to the girls and Chris was much harder the second time, especially not knowing what the future would hold and how long I might be away.  Even before the transplant, I was extremely weak and worn down.  I was worried about getting hit with the BEAM transplant in the state I was in.  My back was still healing, walking was painful, and I was severely fatigued.  The second transplant was not nearly as uneventful as the first.  They rolled the cooler of cells into the room and I kept telling them I didn’t feel ready.  I felt awful and I didn’t know if it was a good time to do it.  They told me they had to do it then because once the cells arrive, they only have a limited window of time to do it.  During the transplant, I began to black out and lose consciousness.  I kept telling them they needed to stop because I was losing consciousness, but they assured me they couldn’t stop.  It had to be done.  They called additional doctors into the room and began taking my vitals.  My blood pressure was dropping and I was having trouble breathing.  They proceeded to recline my chair all the way back and at an incline to try to get more oxygen to my brain.  They finally completed the procedure and planned to admit me to the hospital to keep me inpatient to keep a close eye on me.  I pleaded with them to let me return back to the hotel with my mom.  If I went inpatient, my mom wouldn’t be able to come see me due to the no-visitor policy of covid.  I would be in there for weeks by myself again.  They finally agreed to let me go back with my mom as long as I agreed to call in immediately if any problems arose overnight.  I was going to infusion daily for about 6-7 hours so they could already keep an eye on me every day thereafter.  One of the days at infusion, I got a call from my mom and dad saying that my dad (who had been sharing the hotel with us) just tested positive for covid.  I could not believe what I was hearing.  Everyone in 2020 was terrified of getting covid.  They said it was most dangerous for immunocompromised people.  They keep you isolated after transplant because any ordinary germ could turn into something life threatening.  If I got covid this soon after transplant, I was in serious danger.  I let the infusion team know and they moved me to an isolation room and tested me.  I tested positive.  The doctor came in and confirmed the news but told me the hospital was overridden and it might be awhile before they found a room for me.  Sometime in the middle of the night, I was moved to a negative-pressure room in the hospital.  I was in very bad shape from the BEAM transplant.  I was overridden by very high fevers from the covid.  The nurses would take a very long time to enter the room and wouldn’t stay long.  They had to suit up in protective gear any time they came in.  My mom, dad, or anyone else would not be able to visit me for my whole stay.  They started me on all kinds of IVs and did x-rays, blood tests, etc around the clock to monitor me closely.  I asked them if anyone had gotten covid this close to transplant and if they survived and they said they hadn’t had any patients this happened to yet.  Nobody knew what the outcome would be.  I was too ill to watch TV, too ill to eat, too ill to read, anything.  I spent most of the time just lying there missing home, my family, my friends, my old life, thinking this was it.  Hours turned into days, days turned into weeks.  I’m scared to die, but looking back, death would be better than those miserable weeks I spent isolated, alone, and feeling so, so sick.  That to me was worse than death.  Eventually, the fevers subsided and my counts slowly improved.  It was looking promising.  On December 24th, my counts were almost where they should be but I was told I was not yet able to be released until my platelets, white count, etc. were stabilized.  I told them I just wanted to spend Christmas with my family and asked them what would happen if I just left against their wishes.  They told me it was a hospital, not a prison, so I could leave when I wanted lol!.  That was that!  I had a flight booked for the next day.  My mom had to drive back with my dad and we were worried if I would be able to make the trip on my own.  I was still struggling to walk and became very weak and fatigued from the slightest activity.  I gave myself plenty of time and a long layover at the Atlanta airport.  It did take me quite a while to walk through the Atlanta airport.  I had to stop and rest like every 20 feet.  I arrived home the evening of Christmas and we celebrated Christmas the next day on the 26th.  Being home was the best Christmas present ever!