Reconstituting Immunity

Hi Tessa, the start of my vaccinations were delayed until 18 months post SCT so my Pneumonia was originally due at 14 months post SCT but it ended up being at 20 months post SCT then I get a second hit 66 months post....... It did sting but the arm was ok :) 

Daughter needed a district nurse to change dressings for a week post allo discharge, (an odd unusual reaction to her syringe driver)  talked to her about the flu jab and she brought it with her on her next visit, that was a month post transplant. I think when she went for her next one a year later, they decided to give her the pneumonia jab (2 sore arms!) 

all other jabs had a list that was given to her by the Christie hospital and her surgery so that they could complete everything on time or very nearly. She had a reminder text from GP to make an appointment when the time was right for each one so she could arrange the appointment to suit. 

The MMR contains live vaccines (think apart from some of the foreign travel ones that’s the only one) so it needs a full 2 years post allo before being considered. And only then if they decide you’re at risk, which as a freelance musician daughter certainly is. 

Hugs xxx

I had district nurse to do the dressing after the cyst was excised last year. But I've got to replenish the mag sulphate three times a day so impractical to arrange visits. Im managing so far with mirrors to see what I'm doing.

I don't think my transplant team like any other doctor or nurse deciding what I should have done. They weren't even happy when I saw someone in the day unit instead of the official clinic.  Maybe they will let me off the leash a bit more now.

No such luxury as reminders from anyone. The letter from the hospital had been with my GP for three weeks before I asked if they had got it.

Tessa

lol....... we may be in the back of nowhere up in the Highlands but text reminders for every GP, Hospital and Dental appointment....... and as my SCT team are in Glasgow (a 9 - 10 hrs round trip)...... after the first 6 months where we were in Glasgow every week for three months then slowly reduced to every 2-3 weeks we eventually went completely on to Video Conferencing every 6-8 weeks that were overseen by my amazing Macmillan Specialist Nurse.

Went in at 9.00 am, had my obs and bloods done, blood was sent down to the lab and Heamatology was always given priority so most results were back within the hour and when the Consultant came up on the big screen they had my results on their computer in Glasgow!!!!!!!! 

It's still rather unnerving that I have no follow up appointments or CTs in the future....... "We have, in the last few years started to completely discharge patients who after 2-3 years post SCT are doing good........go live your life and not have to keep looking back over your shoulder every time you get a letter in" I was told.

My GP, Dentist, and some of the hospital use text or automatic phone reminders once the appointment is on the computer. But the SCT team seems to be stuck on letter technology and its then reliant on a human at the other end to put it into their computer. Odd really as the Hospital Trust is linked to University of Southampton which is very cutting edge for IT. 

I spent most of my working life trying to streamline admin systems so I no longer make helpful suggestions or try to fix their problems. The technology is there if they have the will to use it. It's usually down to human choice in the end. Or lack of funding. I guess I'd rather they spend it on good treatment.

Tessa

Hi

I am 5 years 3 months post SCT and I am still injecting immunoglobulins at home every two weeks as whilst my lymphocyte counts are good they just are producing the Immunoglobulins in enough numbers yet to keep me going.. I was on and off cyclosporine until May 2016 and like Moomy's daughter had retuximab post SCT to treat EBV.  The view of the immunology team is that it will just take time.. 

How much time they don't know and the only way to find out if the cells have started working is to come off the immunoglobulins in the spring and see what the counts do over 3-4 months as this is how long they stay in your system..

 Managed to get off the penicillin a couple of weeks ago but still take acyclovir every day.. I will see how I go and then try and ditch that one next!

Must admit I had a right fright when I was diagnosed with cryptosporidium last week, searched the group to see if anyone else had had it post-transplant and the only search result was this! Thankfully it does seem to be improving and Southampton have prescribed me a very expensive antibiotic which will hopefully get rid of it.  I am careful to boil my water even 15 months post transplant but probably have the odd slip up.  Not any more! X

Hope the antibiotics sort it swiftly!

hugs xxx

This thread got me thinking back to when I was discharged post transplant and to where I am now.. thought a bit of a timeline may be useful for others.

The neutropenic diet was only in force when I was neutropenic so I was eating normal food as soon as I left hospital after the transplant.

I wasn't told not to do gardening or anything but just to use common sense and try and avoid sick people!

I was allowed to travel abroad less than 3 months post transplant (I took my cyclosporine with me!). The consultant was relaxed and when we asked if we could go abroad for a break he said as long as it want anywhere exotic! After almost a year of not working all we could afford was a week in Skiathos  in a 2 star hotel! I ate ice creams on the beach and drank beer in iced glasses and travelled on the local bus.. It was certainly good for my soul!!

Vaccinations I had after 10 months as I was travelling to Australia at 12 months post transplant. 

I was readmitted three times in the first 14 months post transplant. Twice for what turned out to be EBV but was initially diagnosed as tonsillitis and once for terrible diarrhoea which turned out to be bile acid malabsorption.

When I had GVHD at different times I wasn't readmitted as I didn't get that bad. ( I did become type 1 diabetic for 4 months when on steroids for the GVHD but that disappeared as I came off the steroids).

Only other thing I had was a lot of vena sections for iron overload from all the transfusions.. that too is now at normal.

As for my immune system it is still not where it should be 6 1/2 years post transplant. Like Moomy's daughter I was treated with retuximab post transplant for the EBV which wiped out my lymphocytes and then I was on cyclosporine on and off for 3 years. So now 6 1/2 years post transplant I have an immune system which is in effect 3 1/2 years old. I do wonder if that is the reason that my immune system is still sluggish.

My IGg count is still around 4.1 (bottom of normal is 6) so I inject immunoglobulins once a fortnight which I do at home. A child doesn't develop full immunity and IG counts until around age 6 so there is still time!  

I had my MMR jab and booster during this summer as it was felt I could cope with a live vaccine.

I have an annual flu jab and seem to have managed with just the odd cold.

At 5 years I was discharged from the Haematology clinic and now attend once a year to the late effects clinic which is monitoring bone density, cholesterol . heart, eyes etc.. a bit like an annual MOT!

As time passes it does get easier and life does become "normal" again.. even the annual travel insurance which only carries a £20 extra premium over normal rates!

I have been reading with interest and curious to see this thread has come up again. 

Over a year has now passed since I first asked the question and I am still no nearer to really understanding how it all works and, particularly, how it affects me. 

I am coming up to the second anniversary of my transplant on 1st November.  I still have not been revaccinated as my CD4 count was still too low at my last outpatients appointment, back on 1st August.  It's due to be retested again at the end of October, at my next visit.  I have has a flu vaccination this year and a tetanus jab a few months back ("It probably won't work, but have it anyway.") when I lacerated my arm in the garden, misbehaving... I think everything went on a go-slow when I was steroids for a year with GvHD.

But - touch wood - I still don't seem to catch anything and have never needed immunoglobulins. I have no idea what my IG count is.  The only thing I have ever caught was a cold - ironically while still an in-patient on the transplant unit!  I have asked about IG, but was just told I didn't need them if I wasn't catching anything.  It's not that I am not mixing with people.  I do go into shops now, when they are not busy  (but watch out for people and clean the trolley with a disinfectant wipe) and I have gone back to a tap dancing class - small number of people, who know to warn me if they have any lurgies.   I see my baby grandchildren, albeit not as frequently as I would if I were risk-free and people come to the home - but are careful.  I can't see that I am doing anything much different to anyone else, so I don't understand why others seem to catch things and I don't! 

I still drink boiled water - mostly.  Alarmed to see that someone has actually contracted cryptosporidium from the water down here in the Southampton area!  I do hope you recover quickly.  

I do a lot of gardening, because I would go nuts if I didn't and I try to remember to wear gloves, which mostly I do. I have a box of disposable Nitrile blue gloves that do for most eventualities.  Haven't travelled  much, because I still avoid public transport.  Really keen to be able to go abroad again, though recognise that the days of going to places without first-world health provision has probably passed.