Immune system after stem cell transplant

Hi, this current winter bug seems persistent as my wife who has never had treatment has been struggling to shake if off since October and it just seems to keep returning and giving when you don't want it to.

John 

Oh these post SCT issues are so normal as you are still in the early days and your baby immune system is trying to grow at the same time having to fight simple infections.

I am over three years post SCT so this is my fourth winter. Was ok first winter, in hospital 4 times (24 days) with lots of infections for winter 2 & 3 and so far I have had a few head colds but managing to keep on top of it this winter.

If your team are happy so should you but it is the pits having to put up with it. Just keep reporting high tempratures just to make sure.

Have a great Christmas.

Hi Jalola,

it seems to hit when you’re easing off ready to rest and relax for Christmas!

hope you manage to fight it off, but don’t forget your team will help you through if you get sicker, keep checking your temp.

hugs xxx

Hi Jalola!

Yep, I know that one!  Mine tested positive for eleven months before it finally disappeared, although it was asymptomatic for most of that time.  I was tested weekly via a 'snot test' and it became a running joke with the staff that I was so good at it, they could train staff how to do it with me as a gunea pig!   I was all set to bake the virus and the staff in Outpatients a birthday cake when it hit the one year anniversary, but it beat me by a couple of weeks, finally got fed up and went away. 

The cold only lasted a few weeks, but I also had a terrible throat which was so painful I couldn't eat for a while. 

It won't go until you've recovered enough of an immune system to attack it.

Hi Jalola,

Just to add what the others have said, around a year post SCT, I had a sore throat which went on for weeks and weeks (I stopped tracking it in the end and it eventually went away). I think I said in an earlier post that at some points it felt like my body was working it’s way through the list of all illnesses known to the human race. That’s not to say you should ignore the illnesses and you definitely keep your team updated, but it is definitely normal to be not feeling right for a fair amount of time post-SCT. All you can do is to keep hanging in there as best you can.

All the best

Greg

Hi Everyone from Accross the Pond!

I’m Kris and have written in a couple of times before.  My mother is more than 11 months out of transplant and has done an amazing job with her recovery.  Her blood numbers look great, and she’ll have her one year check up at Hopkins (her transplant center) in a few weeks.  However, the cold and cough season is upon us now, and as isolated as she has tried to keep herself this winter, she has had a couple of colds.  The first two cleared up, each within a couple of weeks.  But now, our whole family is sick again, due to a visit with my 20 mo old nephew.  He became symptomatic a couple hours after leaving my parents’ house last Saturday, and low and behold, the rest of us are now sick, too-myself included and I barely ever sniffle.  This newer cold comes with a nasty cough, which is highly obnoxious and seems to linger.

Long story short, my mom went to see her primary doctor last week.  She has never had a fever with any of her colds, but he gave her a strep test and flu test-both negative.  He thought she may have bronchitis, so prescribed antibiotics, which don’t seem to be doing anything.  She is so frustrated with this cough, she is going into see her local hematologist tomorrow, because she is freaking herself out thinking she has chronic GVHD of the lungs.  My father is a doctor, has listened to her chest daily, and hears nothing out of the norm.  

Don’t get me wrong.  I’m glad she’s checking in with her doc.  But when she freaks out, I tend to freak out.  I guess more than anything, I’m just looking for some reassurance right now.  Has anyone dealt with lingering viral respiratory infections?  Truth be told, the last 11 months have been relatively smooth sailing, and this is just a little reminder that she is still in a recovery stage.

Many thanks!

Kris

Hi again Kris, oh the problems your mum is having can be very normal for a very high percentage of us post SCT folks.

But our minds look for issues so we can over think stuff that comes along, but the average hospital stays during the first year post SCT is actually 2-3 

I am now 4 winters in (Three and a half years post SCT number two)

The first winter was ok as I was only 2-3 months post SCT so on still on lots of drugs.

Winters two and three I was in hospital 2 x 7 days each winter then this winter past it looks like I will get away with one 7 day vist.

Over these 5 hospital stays I was on various IV antibiotics for Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x 2 and Sepsis x 2

About 6 months post my second SCT I had 3 months of low blood counts caused by GvHD so regular blood transfusions every second week....... but this is part and parcel of a post SCT rollercoster but it is all about the end game.

It does take time for the immune system to be able to fight and just in the past few months I would say that I have fought off a few bugs kindly given to me by our four granddaughters that last year would have been a lot worse.

If these issues continue her team can look to give her some help like regular immunoglobulins to help boost her Immune system.

She is doing great and please pass a big Highlander ((hug)) on to your mum.  

Hi Kris,

I would definitely back up what Mike is saying. Your Mum has a new immune system so she is having to relearn how to fight off all those infections she has done during her life. I am over 3 years post transplant now and I write this dealing with my third cold since January. Then again, I do have a 12, 10 and 6 year old at home so am pretty much living with a constant state of infection! I’ve said on this forum before that it has felt like my body is working its way through the alphabetical list of illness known to mankind! 

Of course, if something definitely doesn’t feel right, I would advise getting on the phone to the medical team to check your Mum checked out. But in terms of frequent infection, yes that has been pretty normal for me.

Hope this helps

Greg

Hi Kris,

i too agree with all that’s been said! It’s a very steep learning curve for a new immune system!

having said that, this winter has doled out a nasty bug which seems like a ‘normal’ cold and cough but goes on for ever, it seems! I’ve heard folk who have no immune problems say it’s been a good 6 weeks!

Daughter had her allo in September 2011 and this last winter had 2-3 weekly immunoglobulins as the previous winter she’d had infection after infection. This winter saw her with one cold which she threw off quickly, so it’s helped. They wanted to get her ‘baseline’ to over 6, it was less than 1 when they began. They are planning to stop again soon till late summer/early autumn when they will check again. So even this far out a low immune system can give problems. 

I hope she is keeping an eye on temp as that’s a good indication for a fast check with her team.

hugs xxx

Hi Xbuff72 (Kris)

I am assuming that your Mother is  no longer immuno - suppressed and as such she is getting to grips with her new system?

Post transplant immune system are akin to a new baby.. if it isn't being supported by immunoglobulin then it will pick up bugs and depending on her strength of resistance will depend on the illness.

If your Mothers system is low then maybe they will consider topping up with IVG's.. Its a long road.. I am almost 6 years post SCT and I still have to top up with IVGs. Keeps me all fine though!!