Post Transplant Discharges and Readmission - Oct 9th to 24th

 The first few days at in DMU ward post transplant were quite uneventful. I was on Ciclosporin transfusions and antibiotics but not much more. Thankfully I wasn't having any bad side effects, and spent most of the time waiting for them to happen. Between days 8 and 12 post transplant people often experience some poor times. During all this, my blood numbers are continuing to fall. The chemo knocks everything out of you in preparation for the transplant. At the time of having my transplant my haemoglobin, platelets and neutrophils etc were fairly healthy but by Tuesday the 12th these had all plummeted down with my platelets at just 8 meaning I needed a transfusion. Platelets help (forgive me Biology buffs) stop your blood from just continually pumping out after a cut so that it has time to heal. Basically if I cut myself shaving it would never stop.

The following day my haemoglobin had dropped to 75 so I needed a blood transfusion too. I also ended up getting a magnesium transfusion. By this point my hair was well and truly coming out. Not so much of any issue for my head, but my body on the other hand... My bed every morning looked like dogs had been fighting on it.

Friday, Day 9 post transfusion is when I began experiencing side effects. I'd had a fever overnight hitting 38.5C at around 2am, so I was sent early for some X-Rays to make sure vital organs were ok. I also had bloods taken from the vein as well as my Hickman line to pinpoint the source of the infection. My appetite was beginning to shrink fairly rapidly and I was gettting quite significant pains in some amusing places on my body, my booty. I also restarted my GCSF injections which are to kickstart the neutrophils into coming back which had been flatline, so low they didn't even show in blood tests. Blood transfusions were also needed and annoyingly two 6 hour bags of fluid so I didn't dehydrate. It was a busy day.

On Saturday my platelets were low at 14 so a transfusion was needed, but thankfully my neutrophils had started showing up on reports, albeit at a measly 0.08. I had a phosphate transfusion too and spent most of the day incredibly uncomfortable in the awkward pain I was in and drifting in and out of sleep.

I felt significantly better by Sunday, the pains had started to withdraw, my blood numbers were up etc. This was all linked to the neutrophils which had jumped from 0.08 to 0.49. The GCSF seemed to be doing its job and the docs were beginning to discuss my discharge in the coming week which would be amazing. Unfortunately though as with all things, I did get some negative news that the tests based on my earlier fever had shown there was an infection in Hickman line. Thankfully I was already on the right antibiotics for the bug in question, but there was now ongoing discussions about having the line removed. This wouldn't be ideal as it stops me from getting poked with needles as much because the Hickman acts as a permanent plug straight to major veins around the heart. I hoped it wouldn't get removed as it's not scheduled to be out until around day 50 post transplant.

Say goodbye!

Early on Monday I saw a team of Doctors who gave me the good news that my neutrophils had jumped to 1.69 and that I was likely to be discharged the following day. I was apparently the best post transplant patient woop woop. But, the decision had been made that the line had to come out, it was simply too risky to keep in. So that afternoon I had the removal procedure. What on average takes 30-45 minutes took around 90 minutes. I remembered during it how uncomfortable the removal is. The reason for its time consuming length is because I had had it in for so long, since the end of June. As such everything had healed around it, so there was lots of scar tissue to cut through. The two doctors performing the procedure did a great job, but it was very unpleasant.

This is the part that was positioned just above the heart.

As discussed on Monday I was discharged Tuesday, just 13 days post transplant which was incredible. I would need to be back in on Wednesday and Friday for tests but overall things were going really well. My mouth and throat felt abysmal as if there was a bottle stuck there and eating was still incredibly challenging. But each day since the weekend it felt like it had improved a little. Even as I write this my appetite is poor, I've had a few biscuits today. Before I was discharged it was explained to me that even though I was doing really well I should expect setbacks and readmissions. With the average post transplant patient going back in 4+ times and the first month post transplant being the worst. I slept like a log that first night back home.

I was back in on Wednesday to the Ambulatory ward rather than HOP where I had my clinical trial drug and was able to chill out in a huge open room practically to myself. King of the castle.

Thursday was spent at home doing nothing in particular. At Ambulatory though I had been prescribed a new drug (not a trial one) in order to finish off the antibiotics I had been on due to the infection in the line. Due to the volume of tablets I'm on, it can make you feel quite nauseous and it seemed to add to it and I ended up vomiting that night at home. Friday back at HOP (Haemotology Out Patients) I saw a couple of doctors and had blood tests and everything continued to seem fine. I did however throw up again in the main entrance hall to the hospital when we were leaving, in a plant pot though. Doing my bit for the environment.

Saturday ended up being a pretty poor day. I was bad basically start to finish. I threw up that morning trying to take my tablets and ended up getting temperature of 37.9C. This meant we had to call the hospital, I was also getting some rashes. It was advised I came in to the A&E department. While in the car on the way there, I hit 39.6C so I was well and truly cooking. I was seen promptly at A&E as they were expecting me and given my own room due to my vulnerability. The treatment from the NHS everywhere I've been is just incredible. I had a number of blood tests, an x-ray etc and was then taken to an inpatient ward to wait on the results of my COVID swab before being moved back to DMU. It's like I never left. I threw up again while in A&E trying to take my tablets and was in a pretty bad way. Saturday night I continued to spike in temperatures at the high 38s.

Had better days

Sunday was a significantly better day. It started off incredibly rough, but eventually the fevers got taken control of by so many transfusions and what not. I also found drinking coke while taking tablets helps, little bit of free advice. I was also taken off of the tablet I'd been prescribed on Thursday and so far this has been positive. The doctors I've seen so far think the rashes and fevers look more like a drug reaction rather than Grafts vs Hosts disease which is an incredibly common side effect from transfusions, and I will likely get it if I don't already. As it is right now, I feel pretty decent at 8pm Sunday night even though it's not been a great weekend. I'd like to say I'll be out again by Wednesday but these things are impossible to predict.

As always thank you to everyone who has contacted me this week. It's meant a lot. It has been incredibly frustrating but I know I need to expect these things as it isn't over just due to the transplant having happened. Please do continue to donate blood, platelets, plasma etc as it does so much good for so many people. And I hope those who are not yet on the Anthony Nolan register do consider joining, you really would be giving someone another chance at life. I hope that one day I am able to properly thank my donor.

As always, all links can be found here; https://linktr.ee/AdamRiley?

The always wonderful Ana donating blood again.