Today is a day of rest. No more chemotherapy, no more ATG or no more fluids. Just a relaxing day before the transplant tomorrow. I’m glad all the conditioning treatment is over with. Only the transplant to go and then it’s time to recover. Hopefully in a couple of weeks I’ll be fit enough to go home for my little one’s birthday party. But that’s not as important as being fighting fit when my body’s ready.
All set for tomorrow, apart from a blood transfusion I need later today because my haemoglobin is to low for the transplant. So for 4 hours later on I’ll be hooked back up, but that’s not to bad considering I’ve been hooked up for the past week. I’ll update after the transplant and give my thoughts and the feeling of being reunited with my cells.
Had a bad reaction to the ATG treatment on Wednesday, and took me until this morning to recover. The ATG is serum from rabbits, that the doctors use to brake down the bone marrow in the recipient. It’s pretty common to have reactions, and unfortunately they need to keep going with it, even if you take a bad reaction. So I’m now midway through all conditioning treatment.
It’s been tough so far. I’m told after this first week , it all starts to get better. But getting through this week is hard. Hopefully Monday, after the re infusion of the cells, I’ll be on the road to recovery. If only tomorrow was Monday
First day of conditioning done and I’m feeling alright. I’ve been getting loads of fluids through my hickman line to help flush the chemotherapy through my kidney’s. I’ll be hooked up 24/7 for the next couple of weeks. Wether it is chemo, fluids or parental feed, I’m (literally) attached to a drip stand. The nurse’s don’t even disconnect you to let you have a shower, so the stand has to accompany me there as well. It’s my new best friend.
I’m feeling a lot more positive today. The past few weeks have been full of worry and stress. At one point I was even questioning if I was making the right decision to have the transplant. After all, nothing has ever worked before, so why would this be any different? I had to tell myself I’m pretty lucky. To be given this opportunity and not grasp it with both hands, would have been idiotic. I’m sure there are hundreds of thousands of Crohn’s sufferer’s who would kill to be in my position. Eventually when I stopped thinking about it to much, I realised this is the chance of a lifetime and the only realistic chance of remission I will get, so I took a more optimistic approach. This WILL work, I WILL be in remission.
So more chemotherapy tomorrow, as well as a test dose of ATG (not sure what that stands for, but I’ll find out). If I don’t take a reaction to the ATG, then it’s all systems go and come Saturday, I won’t have an immune system. I’ll post a more detailed description when I find out the names of all the drugs being used. The nurses are very busy and I don’t like being a nuisance.
That’s me in, and settled in my hospital room for the next 4/5 weeks. Not a lot has happened today. Just some blood tests and routine paperwork that had to be filled out.
I can’t believe the day has finally arrived. It’s been a year since the possibility of a transplant was mentioned, and it has dragged in ever since. It’s been a nice easy day today. Wish the next few days were going to be as easy. As the old saying goes though, “no pain, no gain”.
7 days till transplant day. We’ll see how the week pans out. Stay tuned for more……
Two weeks to go until the second phase commences. I go in on the 4th November, and the transplant takes place on the 11th. There will be a weeks worth of chemotherapy before the cells are transplanted back to me. It’s safe to say I’m not looking forward to the first week, but it’s onwards and upwards after that.
Anyway, this week I had some pre transplant tests. First was a visit to the dentist to make sure there was no underlying problems that may cause an infection while I’m in hospital. Thankfully there was no major problems. I only need a filling, but that’s not going to stop the procedure going ahead, so I’ll hang off and get that after I’m out. I’ve got enough to deal with, with my Crohn’s and getting ready to go into hospital.
After the dentist, I had some heart tests. I think it was an ECG and echo. All went well I presume. After that there was a lung function test. Again all went ok. The lung test was hard. They hooked me up to a machine that I had to breathe into, while they clipped my nose. I felt quite claustrophobic because I couldn’t breathe through my nose and I had to breathe into a small tube. It’s not a test I want to repeat anytime soon. It wasn’t painful, just really really uncomfortable. I was struggling to breathe, but I was told that is normal.
Another appointment I was meant to have was with a urologist, to have my sperm frozen, as the drugs used in the transplant leaves you infertile. Unfortunately, because I have been on methotrexate for a while, I wasn’t able to freeze mine. So no more Mark Junior’s for this family. It was a tough decision to go through with the transplant knowing we can’t have anymore children. We weren’t planning on anymore, but that was our decision, and we could always change our mind, but knowing we definately can’t have anymore was a blow. If I wasn’t so ill, then it could have been a potential game changer. My thinking of the situation was if I didn’t get the transplant, then I wouldn’t be fit enough to have anymore children anyway. So it was a catch 22 situation. We have 1 daughter already, and I would rather she had no siblings with a fit and healthy Dad, than a sick one with little chance of a sibling anyway. Here’s hoping I made the right decision.
So I’m all set for the 4th November. It’ll be a pretty rubbish week before the cells get re-infused, but after that I’m on the road to recovery. I hope this works, and not just for myself. For the whole Crohn’s community across the world. The doctor’s are really optimistic about this line of treatment for Crohn’s. Hopefully more sufferer’s will get the opportunity to receive a transplant and kick this horrible disease to the kerb.
At last, phase 1 is over for me. I went to Edinburgh Royal at 9 o’clock this morning, and was hooked up to the machine that separates all the blood components straight away. I had to sit on a chair with blood running out from my Hickman line, into the machine which separated the stem cells from the other cells, then returned to me via a cannula in my arm. The full process took 4 hours. What no one had told me though, was you can’t stop the machine once it started. I drank coffee and juice like it was going out of fashion, only to find myself bursting for the toilet. So some advice from me, don’t drink much if you’re ever connected to this machine.
Anyway, after the 4 hours were up, the bag of stem cells still wasn’t quite finished. However the machine had stopped, because it runs on a timer. I was told another visit tomorrow would be in order to make up the short fall. However, I got a phone call to say even although the bag wasn’t full, there was more than enough quality cells collected and I don’t have to go back. So I’m now officially counting down till phase 2.
Overall phase 1 was tough at times, but by no means was it as bad as I had imagined. After a week with chemotherapy, MRI scan, 16 hormone injections and eventually the harvesting process, I am officially knackered. Can’t wait till I can say phase 2 is over and I can start living life again.
Today didn’t go to plan. There wasn’t enough stem cells in blood to harvest them. So I’ve had a total waste of a day. I’ve had two more growth hormone injections and I’ve to go back tomorrow.
The count they look for needs to be at 15, and mine is at 12. Hopefully the jags tonight will take me over the threshold. My lower back and pelvis are ready to burst tonight. Really throbbing. It’s by no means painful, but it’s not a pleasant feeling either. That could be a great sign, but I’ll not count my chickens until they have every stem cell they need.