Reconstituting Immunity

Hello Miss Satomi

Yes I think we are both keen gardeners. My symbol is a Constance Spry rose that grows just outside my sitting room window. 

The SCT unit at Southampton has a special filtering unit so all the drinking water has been boiled and chilled - not always very well chilled, I got thoroughly fed up drinking tepid water all the time.  They also supply some of the nearby wards and the day unit, but not the area where the outpatients are held as that's the other end of the hospital. So I take bottled water there - hospital stipulates it must be sparkling.

I use my boiled water for teeth cleaning. That was something I also learnt the hard way when abroad once. But if you are happy with your tap water, then maybe its ok. Why not try some experiments, leaving samples in a screw top jar and seeing how long it takes to go green. 

I have two 1 litre plastic jugs that I keep in the fridge. When one gets low, I know its time to boil the kettle and let it cool (don't put hot water in the fridge). In fact I have two kettles, as one is usually tied up with water I'm trying to cool. The second kettle is used when I actually want hot water. But I habitually go and pour myself some cold water, rarely have hot drinks. What a performance for a glass of water. The strong tea in hospital put me off tea, never did like coffee, so my only hot drinks are usually hot chocolate, rarely mint tea.  Visitors aren't allowed to touch my precious supply of boiled water - they have to drink the tap water.

My gut was awful until I finished taking magnesium. Then gradually returned to normal.

Tessa

I think the short answer is that we don't fully understand the human immune system very well. I have one friend with lupus (crazy immune system with no relief or cure) and another with mast cell disease (which I'm pretty sure her drs don't know how to treat). Why do I get a cure through SCT and they don't?

So anyway, my dr said that I have to be a germaphobe for as long as I'm on tacrolimus and sirolimus. Just last month they took me off prednisone, so, you know, baby steps. Not looking forward to all the vaccinations!

Good morning Alissa, I was getting my vaccinations at more or less the same time as one of our granddaughters..... made me totally understand what the little soul was having and I am a big butch Highlander  xx

Just come back from seeing nurse to plan my re-vaccinations. Over the next three weeks I am having two teeth out and need to take extra antibiotics. I can't have any of the vaccinations within 1 week of the antibiotics. That takes us into the window for having seasonal flu so that will be the first jab. Then we have to wait 4 weeks between each vaccination The first one on the schedule will probably leave me with a 'dead arm' for a day, and may give me flu like symptoms for a while, so I can't plan to do much.

One of the vaccines has to be 'cold-chained' from the pharmacy, which means bringing it straight from the pharmacy fridge to the surgery fridge in special container. Another one needs special permission to give me as it is only licensed for three year olds.

On top of all that, the cyst on my back has blown up again, and I have to put on magnesium sulphate under a dressing three times a day. It's not easy to reach because it's on my back and because I have developed a gangelion on my right wrist - oddly at almost the same time. 

Feels like one step forward and three back.

Tessa

((Hugs)) Tessa, you are such a trooper.

Are you getting your vaccinations at the hospital?... I got all my ones at my local GP surgery as they are all standard 'in the fridge' stock.

xx

Thank you Alissa, Mike and Tessa for your input. 

Tessa, your revaccination sounds a right palaver!  I hope your teeth is not too challenging an experience and your cyst heals quckly, without any complications. 

Seasonal flu vaccine?  Did you have one last year, Tessa?  I'll have to remember to ask about it when I'm next in clinic. 

Thanks for sympathy.

I am having my vaccinations at local GP. Much closer and easier to park. I just have to avoid tourists and coach parties as its a popular stopping off place.

Yes I had seasonal flu jab last year. As I was still on cyclosporin then, they said it wouldn't have full effect but were keen for me to have some protection.

Tessa

Yes, all SCT patients should have the annual flu jab, and it is not a ‘live’ vaccine so no worries! 

You might at the same time get grabbed for the pneumonia vaccination too. 

Hugs xxx

The pneumonia one is on my 'after a year' list so take advice from the hospital. I think its the one that is going to make my arm hurt and may give me flu symptoms. The problem with having the vaccinations too early is that they may not be effective as well as having side effects  you can't deal with.

Tessa

I wasn't told to have a seasonal flu vaccination last year and was immediately post-transplant.  I'll ask about this year's when I next go to clinic.

I haven't had any information about vaccinations at all, but I am only ten months post-transplant so perhaps it's too early.   I know I'm playing catch-up anyway because I had GvHD and Cyclosporine was maintained to deal with it.