Hey guys. Has anyone had issues with EBV following an Allo that gave them bad glandular fever resulting in problems with their pituitary gland. I have just got out of hospital again after being extremely poorly and to the point my family didn’t think I was going to make it.
I’ve never even heard of it but it’s caused me so much trouble these past few weeks I’ve literally lost about 2 weeks of my life where I have no memory of anything even my family visiting twice from Leeds and sitting for hours with me in hospital, it’s been truly horrible. My mother-in-law said she thought I’d just given up and would come and make me walk up and down the corridor but again, I don’t remember any of it, nothing. I didn’t eat for 2 weeks and the hospital thought I had developed mental issues with it all and wasn’t coping. It’s only because my wife and a nurse I knew from my own hospital said no it’s definitely not him, there’s issuse with something in the brain that they started to look further otherwise I dread to think where I would have been now because it was really hard to find. I’m now on tablets which have improved it immensely but I’m still not 100% and have to see a endocrinologist going forward.
It’s still not fully clear yet but they believe it’s become swollen due to my fever and was putting pressure on all the nerves which pass through it to the brain.
Of all the things I thought might get me it’s something really strange and random that causes me to be so so poorly and only the determination of my wife and nurse that stopped it almost certainly becoming potentially fatal.
With regards to the EBV I’m still been treated for it but hopefully next test will show it’s almost gone and all my my bumps and lumps have almost gone so that’s all positive. I’m suffering with GvHD in the gut but it’s no too bad yet but it’s causing minor issues but if it’s killing the cancer and the EBV it’s a small price to pay.
Anyway i just thought I would share my latest twist on the journey with you guys.
Regards
Mark
Hi Mark and Mark, sounds like you are both making steady progress and getting through the bumps in the road.
Alcohol? I think it’s most likely your body saying “what is this?” like having that ‘one too much’. The first dram I had was at Christmas after Allo one (6 months) and it was not great and it did take a ‘few’ to get over that taste back.
My advice for living post my two Allo’s was miles apart....... “Just keep an eye open for any infections, not long hugs from the granddaughters and control the places you go”....... and I had no real issues post Allo 1........ but it did not work 
The day I was due to leave the SCT Unit after my second Allo - my head consultant came into see us both and was very specific with regards to what I/we had to do......... “This was most likely the final role of the dice for you so don’t jeopardy it by doing silly things”
“For the next year - or until I say different no clubs, pubs, restaurants, supermarkets, coffee shops....... nowhere that you can not control what you are coming in contact with. Your 4 Granddaughters, including your 1 month old granddaughter MUST be kept at arms length for the first 6 months, watch what you eat and don’t drink alcohol” she knew that we were part of the leadership of a large Church in Inverness “I know you have lots of Church friends but you must not go to any event for the first year”
So I did exactly what she said.......still ended up in hospital a few times with Chest Infections, Pneumonia and Sepsis but that was over 4 years now and a lot of it are fuzzy memories.
You are both doing great.
