Neutropenia

[Smyally]

Hi everyone how are you all? Hope you’ve had as good a day as possible. At the moment I am waiting in a side room in Addenbrooks a&e waiting for a place on a ward in a side room. Had my blood results from clinic yesterday and my white blood cells have dropped very low. The doctor has told me that I’ve got neutropenia. Has anyone else had this? I’m two and half months post transplant xxx

[alfredthegreat]

Hi Smyally.

Sorry to hear that you've had to go back in.

I can't help you over neutropenia, hopefully someone on the forum will know about it.

Hope they get you sorted soon. You're in very good hands. Are you going on G5?

Wishing you a speedy recovery and hope that you're heading back home really soon.

Very best wishes.

Alf

[Smyally]

Thanks Alf. Hope you’re keeping well. I’m afraid because it has to be a side ward it could be anywhere. Would prefer it to be G5 obviously. Was doing really well, but they did tell there would be a few bumps in the road during the first few months. Xx

[alfredthegreat in reply to Smyally]

Yes, I had a few days back in after only a week of discharge.

I had my Adoport increased for a while.

Yours, as Miles says could be down to one of many causes, one of course could be meds. Hope that it's something nice and simple like that.

Keep us all posted we will all be thinking of you and sending positive vibes

[ThreeSmiles]

Hi Smyally

Sorry to hear that 😕.

I looked at an NHS website that detailed neutropenia. But it was too complicated for me to even begin to summarise! I presume the doctor has explained the possible potential causes - of which there seem to be many!

Hope they get to the root cause ASAP.

Good luck

Miles

[Hidden]

Hi there Smyally,

Yes, I had it, not quite sure what causes it and in truth they still do not know in my case.

I spent a long time in and out of the hospital with this.

Your immune system is in a really compromised state. This is why you are taken in a private room.

It is for your safety, they do this, they try to protect you from everyone.

They wear masks and aprons, gloves before they come to you.

You cannot use the public toilet either, you have to use your own in the room. Or a commode.

I had to have a pic line put in, as there were really no veins left at all, as blood is taken daily sometimes twice a day.

I also had to have a bone marrow biopsy.

Like I said I have no clue what causes it.

My bloods are still very much on the low side.

Every 12 weeks or so I was having a blood transfusion.

This situation is still on going for me. They did every test under the sun. Hospital were awesome.

In the end, it was narrowed down to the Adoport.

However, as my LFT is good, so they are reluctant to change it.

I think they will wait for the lower doses.

I am on 4mg daily 2 in the morning and 2 in the evening.

Maybe my bloods will improve when the dose is lower.

Hope your stay is as nice as it can be, you are in the best place. Get well soon. Love your liver sister Jaycee. Xx

[ThreeSmiles in reply to Hidden]

Aww Jaycee - that does not sound nice at all 😕. I know that they say you have to stick to the same manufacturer of your Tacs but you would think that in your case they might try an alternative. At QEHB they use Prograf.

Hope that lowering the dose helps you 🤞

[Peter_Plymouth]

Hi - yes I’ve also had neutropenia and in the end no cause was found. I was referred to heamatology and yet more tests were run. They did get an abnormal bone marrow test but for reasons I didn’t understand the test was inconclusive. Had it carried on they would have repeated it.

However for no apparent reason other than time my neutrophils have picked up. Hardly normal but high enough that heamatology are no longer interested. I guess this is good. At least I have enough of an immune system to lead a relatively normal life as long as I’m thorough and make sure I’m good with hand washing etc and try to avoid people with obvious colds etc you should be fine.

Good luck with your journey-Peter

[Hidden in reply to Peter_Plymouth]

me too Peter same pathway...

[alfredthegreat in reply to Peter_Plymouth]

Hi Peter.

Good to hear from you and glad to hear that you are doing ok now.

I think the first year or so can be an up and down time.

I had a few issues recently at 15months post transplant. They have all been resolved by reducing my Adoport, I'm only on 2 mg a day now, 1 mg morning, 1 mg evening.

My Azathioprine was reduced by 50% 3 months ago and has been stopped altogether now.

It's all a big difference to the amount of meds that I was on at discharge after the transplant, all much needed at the time though.

I hope things continue to improve for you

All good wishes.

Alf

[Bootandall]

Hi Smyally,

I'm sorry to hear about your troubles.

I have not had an organ transplant, but I had neutropenia after my first chemotherapy years ago. My bloods still tend to run low. So in my case, it was drug-induced.

Best wishes for a speedy recovery! 🙂

[Smyally]

Thank you all so much for replying. It’s reassuring to know that we are not alone in things. The doctors have just come round and explained that it is my medication that may have caused this. I’m having injections to kick start my bone marrow, and hopefully we could be looking at escaping at the weekend or early next week . So feeling more positive this morning. Have a good day xx

[ThreeSmiles in reply to Smyally]

Sounds promising!

Good luck.

Miles

[Hidden]

We hope you feel better soon Smyally from us all at the Trust

[Smyally in reply to Hidden]

Thank you Trust1 x

[Wass71]

Hi Smyally, thinking of you and sending get well soon vibes. I hope they manage to get things back on track, and you're back home quickly.

Take care, keep us posted if you can.

Wass x

[Smyally in reply to Wass71]

Thank you x

[Hidden in reply to Wass71]

Do you have low platelets Wass? I do both from chemorad and from PBC. Haematologist said a drop to 30 would need treatment but tho fluctuating for years they haven’t gone as low as that. I bruise more when they are low. xx

[Wass71 in reply to Hidden]

Hi Fili, yes mine were 50 last time they were checked. When I was up at King's for 2nd call, they were debating on if to give me some pre op platelets, but decided that if it was below 50 they would have. But as it didn't go ahead it didn't matter. Although annoyingly my tooth which cracked in half is causing so much jip, but dentist is too worried about platelets and ptt, so won't remove it in the surgery, I'm still waiting to have it done in hospital, nearly 6 months wait for tooth extraction. I'm tempted to pull it out myself!!! 🦷😷

[Hidden in reply to Wass71]

That's a great nuisance, having to wait for dental treatment. I'm sorry to hear that. What is ptt?

[Wass71 in reply to Hidden]

I think in smyally's case it's low white cell count that's of concern. Therefore risking infections etc x

[Hidden in reply to Wass71]

of course, I'm getting muddled, but at least Smyally is in the best of places to get sorted. Fingers crossed for you xx

[Hidden in reply to Wass71]

I was mixing up my penias! It happens a lot lately

[ThreeSmiles in reply to Hidden]

Sounds nasty......

[Hidden]

Pleased to hear you are getting your platelets brought back in balance Smyally. I hope you’re soon home again xx

[Kristian]

SNAP! 🤣🤣🤣

I too was neutropenic at 2 and 1/2 months, lol. My white cell count had been dropping steadily and was very low at about 1.5 I think it was. Told me if I got an infection go to a&e. I got an infection, lol. My white cell count had dropped to less than 1 and neutrophils were almost non- existent. Took about 3 weeks to resolve in my own little side room with a fancy triangle on the door to stop people wandering in. The basically stopped all anti rejection meds for a week then gradually reintroduced them but at a lower dose. That seemed to do the trick and they decided the cause was just over suppressed immune system.

[PeterP54]

Hi

I had neutropoenia about 3 or 4 years ago, some years after my TX and also after I had PTLD. I wasn't put in isolation like many report, I was already retired so not exposed to too many people. I wasn't even advised to avoid other people IIRC. Also had a bone marrow biopsy, that did not find any abnormality. It seemed to be a mystery to my doctors. I was prescribed self administered abdominal G-CSF injections to boost my neutrophils (boost appeared only to be temporary) . I did not find the injections painful, as I was able to target an area near my TX scar where the skin nerves were subdued.

My neutrophil count like some others was virtually zero but a bit like a roller coaster ride would go up and down. Eventually it resolved on its own. Luckily I didn't get any infection and never felt unwell.

Good luck with a diagnosis and treatment if necessary.