Repeated viral infections

RobA

Hello all,

I'm approaching 8 months post transplant and although generally I am doing well I have been suffering from repeated viral infections over the past couple of months.

Thus started in February when I developec a cough and cold like symptoms, no temperature. A swab in the bone marrow clinic showed a RSV infection. This cleared after about 3 weeks but within 2 days I was coughing again. I had my first re-vaccination at this point; the next day I started to feel really under the weather, heavy limbed and woolly headed but again no temperature. I had another swab which showed a Flu B infection. Thd flu jab obviously did it's job as my symptoms really were very minor and I quickly recovered. I then managed a week without a cough but I caught another RSV infection which took another 3 weeks to clear. I was then 10 days free of cough but have just started coughing again and feeling really weary. I had my second vaccination just before these symptoms started so I don't know if the two are linked or this is just a coincidence.

In the grand scheme of things I guess these are minor irritations but I feel really frustrated by the situation.

I was wondering if anyone else had experienced anything similar?

Thanks,

Rob.

P.S. I had a matched unrelated donor transplant with RIC conditioning.

greg777

Hi Rob,
What you describe is pretty similar to my experience. I am 2 years post transplant and have a fairly regular frequency of viral infection.
Has your medical team checked your immunoglobulin levels? Mine are still below the normal range and I had regular top ups for quite a while after transplant which I think helped. I am trying to wean myself off them now as I want my immune system to stand on it’s on two feet, but they can help if the infections are persistent.
Hope this helps,
Greg

RobA

Hi Greg, thanks for the reply. Low immunoglobulin has not been mentioned before but the transplant nurse specialist did mention a dose of immunoglobulin if the infections persisted. I understand it has been a pretty bad winter for viral infections generally so maybe I've just been unlucky. Having 3 children at home doesn't help either I guess. Anyway it's reassuring to know it's not just me!

Regards,

Rob.

Dieseldrinker62

Hi Rob,

I think this winter has been a bad one for flu infections going around. I've had it myself since before Christmas and even now I've got a cold of sorts and am coughing some not too pleasant stuff up most mornings. Working in an office full of people coughing and sneezing probably hasn't helped, but at 5 years post transplant I am hopefully a little more resilient to infection.

I had the flu jab and take penicillin daily but I still got a chest infection, so I went to the GP and was referred for chest X-Rays and put on a succession of antibiotics. I had a check up with my consultant a couple of weeks ago and she told me the X-rays showed pneumonia in one of my lungs, which the GP never told me! Thankfully the infection has now cleared up but I feel like I've had a lucky escape.

I'm looking forward to the weather warming up and drying out as I think the cold damp conditions we've had this winter have not been healthy for anyone, let alone those of us who have gone through stem cell transplants.

It just shows we can't get complacent about infection at any stage and need to be cautious. I hope you're feeling better soon and can continue your recovery unhindered.

All the best,

Steve

RobA

Thanks for the reply Steve. It looks like Spring will finally be here in the next couple of days; hopefully that puts an end to virus season. It was lovely to feel the warmth of the sun on Saturday (with Factor 50 applied of course). I had forgotten what that felt like!

Meerkat

Hi Rob. I’m afraid I agree with the others who have replied to you. I am currently sat on my settee, coughing away. I am 2.5 years post transplant and since the end of October I have had one infection after another. ‘Frustration’ is an understatement as these have really stopped me getting on with my life, including having to cancel a holiday, which I didn’t feel well enough to attend. I blame my small grandchildren, but I agree that in the big scheme of things, these are small ‘inconveniences’. Like you, roll on the warmer weather. All the best!

RobA

Hi Meerkat, thanks for the reply, although not great to hear that this could become a regular occurence

Hayley_Anthony Nolan

Hi Rob

Thanks for posting, I am the nurse specialist in patient services.
I just wanted to add that 8 months post transplant is still early, your immune system will be recovering so what your experiencing is normal, although frustrating for you. You might always be slightly more vulnerable to infections in the winter but as time passes this should improve. Its is recommended that you should have the flu vaccination yearly in order to help with this. Keeping yourself fit and eating well is essential so bear this in mind too.

If the infections persist I agree with Greg, you should ask to have your immunoglobulins checked. Sometimes these are low and infusions to top them up can help.

Hopefully the worst of the weather has passed and you will now begin to feel better.

Keep us posted

BW
Hayley

RobA

Thanks for the reply Hayley. It is reassuring to know it's not just me but still rather frustrating. The swabs taken at my last clinic session tested positive for RSV and so I am being treated with Ribavirin and immunoglobin. I'm still coughing and feeling very tired though. Like I say frustrating but in the grand scheme of things it is just a minor irritation.

Regards, Rob

crowberry

Hi Rob sorry to hear your troubled so much by virus sometimes it feels never ending doesn’t it I know we feel that way too . I hope the warmer weather has helped for us it’s brightened up the windows from the hospital at least !,, much love Christine x

RobA

Hi Christine, thanks for your mail. It is frustrating and a little bit worrying as both of my previous bouts of blood cancer were preceded by a cough which wouldn't clear up.i had a blood test last week which showed all my counts were fine but at the back of my mind there is still a worry that this could be a sign of relapse - completely irrational I know. Things are slowly improving though and I felt well enough to get out on my bike this afternoon. That was hard work but really rewarding. I've been following your news about Bob with interest. I'm sorry to hear he is suffering - I remember the horrors of C Diff and to couple that with gut GvHD must be really hard. I guess it is good that he has some GvHD - hopefully that triggers GvL. Keep positive.

Rob.

crowberry

Hi Rob pleased to hear your picking up Bob is too much better presently onward to second DLI C diff seems to have moved off thankfully. He’s only GVHD is in the mouth the gut turned out to be Cdiff mouth GVHD is minor so they need more sight for GVHD against disease so on we go .
How is your throat these days ? It is a worry but we all remain hopeful living in hope not fear ( well if I am honest most days

RobA

Hi Christine, I'm glad to hear that Bob is making good progress. I hope that the second dose of DLI will kick-start the graft vs leukaemia effect.

I don't want to tempt fate but I have been cough free for about a month now much to the relief of family, friends and work colleagues.

I think the lovely weather has been a help both in terms of some of these viruses disappearing and also mood enhancement. Everything feels better when the sun is shining.

Best wishes to you and Bob.

crowberry

Pleased to hear your finally feeling a bit better my son Bob is too still only GVHD in the mouth but needing steroids as mouthwash to keep on top of it sounds strange hoping for GVHD but hope it’s enough ...
As for the sunshine it’s surpassed itself recently although I know Bob is struggling at times in the heat but there are worse things to struggle with lol