Reconstituting Immunity

This certainly IS a puzzle! 

Having a daughter coming up to 7 years (next month) post allo who had a German man as donor, and who had her childhood shots again but still has a very low immune system, I’d really like to know the answers!

since her allo she’s had pneumonia a good few times, coughs and colds a-plenty together with ear and sinus infections and the docs still seem puzzled. She will be starting immunoglobulins next month, which at long last have been approved for her in Oxford (they wouldn’t need permission at the Christie, but she’s moved south). 

I would guess that it’s due to the fact that immature stem cells are used in the transplant that presumably therefore don’t carry any immunity levels; but I really don’t know and would love to know! Maybe this is a subject for the ‘ask a nurse’ section? Aha, I see that the ask SCT nurse is ‘closed’ 

I can only suppose that they know the patient will have to develop immunity to the common pathogens all over again, being the reason that said patient has to be very careful post allo? 

Daughter is also going to have her immune levels of the jabs she’s had checked as well as her drug response levels, to see if she can now have the penicillin group of drugs. That, too, will all be next month (she’s got a busy September!) 

hugs xxx

Hi moomy!

Thanks for answering!  I'm probably tempting fate by saying so, but I've never had any infections at all, of any description! No temperatures at all.  Nothing! 

I caught one cold, ironically in the transplant unit, back last November.  Whenever I am tested (every time I go to the clinic) I am still +ve for rhinovirus, but I have had no symptoms for months and months.  I am often the only patient on the list labeled as being infectious - so why hasn't everyone picked up a cold virus that won't go away, if they have no immune system? 

Back in the spring, I asked the consultant about taking hay-fever medication, because I always suffered badly.  He asked me to wait and see if I was affected, "...because you have a new immune system now and your donor might not have hay-fever".  Sure enough, I've enjoyed my first summer for decades with no hay-fever. 

So if it works for hay-fever, I don't understand why it doesn't work for immunity to infection!  If we have to be exposed to pathogens all over again, to acquire immunity, why do we have to be so careful not to be exposed to them?   My brain hurts! :) 

Hope your daughter gets on ok in September.   No vaccinations for me yet - and measles on the increase in my area.  6 reported cases in 2017 and 41 cases already by the beginning of August this year.  Almost all cases are the young adult children of anti-vaccers at the local university.  

xx

..... what moomy said ;) ;) ;) 

So I am three winters post Allo number 2 and went through the first winter with no infections but my transplant was in October 15 so was still on ALL the post SCT drugs.

But the past two winters I was 4 times back in hospital (21 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis and during the first year post Allo had two months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin :( 

I did get Immunoglobulins just after this past New Year during the last NHS DB&B and my team are now saying that I have a good chance of getting through this winter without any major issues - they hope!!!

I will be on Clarithromycin for life but have been told that I may now not be allergic to Penicillin (waiting to see how mommy's daughter gets on with her allergy test) and apart from Vitamin D that is my drugs. All vaccinations were done within 18 months post Allo.

Some stuff we can not get jags for so our Granddaughters have all had the German measles vaccination (poor things) to try and reduce that risk for me but I do have a stock of Acyclovir at home incase I do develop Herpes, Chickenpox/Shingles etc.

I am only coming up to my Third SCT birthday and I see the things that our granddaughters were getting sick with at 3 years old and I just think that in some way this is me :( we just have to develop our resilience to the stuff that goes around.

Even although I have been discharged by my Heamatology team I still have to see my GP every 6-8 weeks just to keep an eye on me.

But put your question out to Jane, our Nurse who has experience in Stem Cell Transplant and post SCT aftercare and she can get it once she is back online.

Highlander ((hugs))

Thanks Mike!  It seems as if it's a mystery to one and all! 

I followed your link to Jane, the Nurse specialist.  Coincidentally, I came across a thread on her page with an interesting related discussion.

I think I'm even more confused now!  Jane talks about revaccination from about six months in her unit and lifting of the neutropenic diet once a patient's neutrophils have recovered.  I am still strictly on the neutropenic diet after nine months (we've agreed a concession for pink meat though) and got a telling off for not drinking boiled water. 

xxx

Everywhere is so different and it is all about where the person is at any one point in time.

I was on my Neutropenic Diet for about 18 months after my second Allo and I should have said that I did not start my revaccinations until after 18 months once my counts were on the up. had a very long recovery :( 

Following my first Allo I was off my Neutropenic diet within a month!!!!! but was still on my Cyiclasporin for the 100 days....... and never told to boil water?   

No one size fits all.

My consultant is convinced I'm going to catch cryptosporidium from drinking tap water.  He said:  "There's no cure. It'll probably kill you, but if it doesn't you'll be pooing like a cow for the rest of your life!"

He wasn't impressed by my argument that I'd downloaded the analyses of water purity from our local supplier for the past seven years and it had scored a zero for contaminants every time. Our local water comes from bore holes and is filtered through chalk too.  He said they only have to report if contamination is above a certain level.  

Still, he's in charge of one of the leading centres in the country and their transplant results are impressive.  It's a fair assumption he knows a darned sight more about this stuff than I do, especially since he used to be a microbiologist!   

Life has improved since I've got a concession on pink meat and live yogurt though!     It's just amoral to buy beautiful South Downs lamb and then incinerate it! 

Hi again,

I think they reduced the clean diet for daughter at around 3 months but she was still very cautious. Where she was living there were fab restaurants which she trusted as they cooked from scratch, she had take sways from them, then on but chose her menu carefully. 

She was told to run tap water for a complete minute before using it after that 3 months was up but in any case it tasted slightly muddy always so she preferred bottled. 

And yes, she’s asked if they could check her measles immune levels as she’s a freelance musician therefore at risk of catching all sorts, had her MMR at 2 years post allo as there was a measles hot spot in Swansea and she was due to work there. She was glad she took a complete week off as the temps were pretty high with the vaccs. 

Hugs xxx

Lol on the pooing front :( and yes it was so good to be able to eat 'pink' meat....... but coming from the Highlands it was the shell fish embargo that got me..... as we do love our shellfish :) 

We do have to keep in with our team as they are the experts. I did ask about boiling water/bottled water and my head SCT consultant basically said 'get a grip Mike, where does your water come from??' Lol.

Hello Miss Satomi

I have the same consultant team as you, so have had the same water warning. Oddly one of my volunteer drivers was ex-water industry and said that drinking water has a 'shelf-life' of 4 days - i.e. you should be able to leave it in a jug and still be able to drink it. Longer than 4 days it isn't recommended even for healthy people. When I had my unexpected week in hospital in February I left two jugs of boiled water in the fridge. One had turned green by time I got home. That's boiled, chilled and still went green !  So maybe my local water isn't so brilliant as yours. 

I was recently told I could eat salad. I wash it under the tap to get rid of soil, then rinse through with some chilled boiled water to get rid of the tap water. They didn't tell me to do that, but seems logical to me if there is a risk. In the past when visiting countries with dodgy water I was told not to eat the salad and not to have ice cubes. Of course the double salad washing doesn't happen when I go to a restaurant, but how paranoid need we be?  I truly hope this boiling water doesn't go on forever, but I was told that at my age my immunity might never fully recover.

I was also told to keep avoiding soft cheese, shellfish and buffet food. I haven't asked about yoghurt, and I also wonder if cooked prawns are ok?  Questions for next time.  I am also allowed to do gardening as long as I don't get scratched.

As you have already discovered, different establishments seem to have different criteria on when things are 'safe'. I asked a new doctor about it - he said there was a broad range of criteria within which they have to work, but each hospital can decide on specifics. He had recently worked in Germany and it was the same there. 

My understanding is that neutrophils are our main defence against bacteria, whereas CD4 fights viruses. I'm sure it's really much more complex than that.  Cryptosporidium is a parasite so I don't know on that one.  My CD4 count came up to two-thirds of normal after 6 months, but has refused to get any better. Neutrophils were fine. 

Children acquire their immunity gradually through small exposures, so the body learns to recognise new enemies. So even if I have a slip-up or a salad only washed in tap water, I'm assuming that a little exposure will help me build up immunity gradually and naturally. It does worry me though if my old body will perform like a toddlers.

Tessa

Thank you Tessa!  That's more sensible information on immunity than I've had out of anybody at the hospital in nine months! :) 

I avoid soft cheese, shellfish and buffet food too - not that I've been anywhere to eat from a buffet. I still don't do salad, except when it's made from peeled veg.  And I don't do ice cubes.  Green stuff doesn't do my gut much good, anyway.  I don't eat out at all - except with GP daughter and chef friend, who understand the 'rules'.  I keep looking at fresh sea bass, straight off the boat and wondering if I could get away with ceviche!  (Husband always says a firm No!) 

I started eating pro-biotic yogurt to try to get my gut to settle down finally.  It worked! 

I don't recall anyone boiling water for me when I was an inpatient - do they have sophisticated filtering equipment there or something?  I have wondered about rinsing things in tap water (I leave mine running, too) and teeth-brushing.  I don't drink nearly so much when the water has to be boiled than I do when it's straight out of the tap.  I don't have enough containers to keep enough in! 

I do a bit of gardening, but go out in a full CB warfare suit!  Mask, surgical gloves, leather gloves, sun hat, factor 50...!  I don't touch soil or anything prickly - but I did prune the cordon fruit trees.  Very cathartic it was, too!