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Platelet levels

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Allmount Total Reaction Points: 1
My hubby has been to the Hallamshire today for his weekly blood tests & review. For the past 2 months all his results have been fantastic and he hasn’t needed any blood since August. The results today revealed a significant drop in his platelets ( from over 80 to over 40). As you can imagine he was very disappointed. His doctor has explained that he may have had an infection which has caused this. He has had an on/off sore throat and cold symptoms. We have to go back next week for another blood test to see how they’re doing. Is this normal/to be expected and am I worrying unnecessarily? All his other blood levels were absolutely fine. Many thanks Alison

Best Answers

  • greg777 Total Reaction Points: 86
    Answer ✓
    Hi Alison,
    I couldn’t remember how far along your husband was? I remember my counts, first platelets then all of them, steadily declining from around 100 days all the way to 200 days. In the end, we didn’t really know what caused them to fall although persistent infection was cited as a potential reason. I was always told that the trend was more important than a one-off count so if possible I would try to put this result to the back of your mind and see what the next one is doing. I know this is easier said than done as there was a period when I was obsessed with them - I came to the conclusion there was very little I could do about them and worrying was actually making me ill.
    I really hope the next ones are back to where they were and you can get back to focusing on recovery.
    All the best,
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Answer ✓
    Hi Alison,

    As Greg says its possible that it may just be a blip which I guess could be related to his cough and cold which has upset the balance a little and hopefully things will pick back up again when that clears. There's a similar discussion going on in Mandy's 'new to the forum' thread at the moment where her brother has had a similar experience so it shows it does happen to others too. The explanation from his doctor that he may have had an infection which has caused it seems plausible.

    Because we get tested so regularly I think its easy to scrutinise our results and worry more than perhaps we need to, though of course it is understandable. It would be interesting to know how similar infections might affect somebody who hasn't gone through a transplant and is otherwise healthy.

    The good thing is that his doctor is retesting him again soon and will identify any further decline. I've no doubt that if they have any concerns they'll do more extensive blood tests and possibly mouth swabs to see what infections there may be. If his other counts are normal then hopefully it is just a blip caused by an infection that has affected his platelet count.

    Please let us know how he gets on as I'm sure this will help others who might experience similar worries.

    All the best,

    Steve
  • Rachelj01 Total Reaction Points: 64
    Answer ✓
    Hi Alison

    Sorry to hear about the platelet drop. As Hayley stated it is normal for the numbers to go up and down. The most important thing is that the consistent trend is a good one along with his chimerism results.

    I am two years post transplant and I can feel my immune system is more 'fragile' as it's young. I get more sniffles and I still suffer a little fatigue from time to time. It really is a rollercoaster time. The fact he hasn't had blood since August is fantastic.

    Wishing you a happy and healthy festive period.

    Rachel
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Answer ✓
    Hi Alison, that’s good news that you’ve found the cause and when he gets over his cold he will hopefully soon pick up.

    I don’t remember having clips to hold my Hickman line in, I’m sure it was held with a couple of stitches. I also had an infection in my line which meant it was taken out earlier than I think the hospital would have liked but thankfully it had done it’s job by then. I now just have a couple of small scars where it was inserted.

    I’m sure your hubby will pick up again soon and I wish him a speedy recovery. All the best to you both and everyone else for New Year.

    Regards,

    Steve
  • SuePSueP Total Reaction Points: 60
    Answer ✓
    Hi Alison,

    So sorry your husband had to be readmitted but it does sound as if they’re getting on top of the infection.

    I too had my transplant in Sheffield but that was four years ago. My line was held in with stitches so the procedure must have changed. In the end, the entry point of my line started mattering so it was removed early and it then healed up. It makes sense that a foreign body like a clip could be a source of infection.

    On another issue, my husband always goes in with me to see the doctor. He says it helps him understand what’s going on. It also means there’s two of us to take everything in as it all can be so technical and complex. Neither of us feel it’s an invasion of my privacy and it certainly helps me.

    I hope your husband is home soon and his steady recovery can be resumed.

    Do keep us in touch.

    Sue

Answers

  • Allmount Total Reaction Points: 1
    Hi Greg. His transplant was at the beginning of March this year. I suppose with him doing so well, something like this seems such a huge thing but I realise it isn’t. I don’t go in to see the doctor with him which I suppose I should do but he’s an adult and I feel he’ll be able to speak more openly with the doctor if I’m not there. Thank you for your comment, it’s helped ease my mind and put things in perspective. He feels ok and has no signs of infection only mild bits of skin rash etc. We shall see what next Thursday brings. Thank you again Alison
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    HI Alison

    I am sorry that your husbands platelets have dropped, I realise that when he has been doing so well it can feel like a bit of a set back when counts change. In terms of a transplant he is still early, he is less than a year and his immune system is still recovering so it is normal for any kind of infection or virus to upset the balance. Coughs and colds at this time of year can affect his blood counts so I am sure that could be the reason. If the doctors are not overly concerned then that is good.

    Also remember that he is doing well, its important to look at the bigger picture and the team will be monitoring his other bloods and chimerism and will look at everything rather than one result in isolation. Try and focus on this and see what his blood results are like next week.

    Keep in touch.

    Best wishes
    Hayley
  • Allmount Total Reaction Points: 1
    Thank you all for your helpful comments. We have got to the bottom of the infection! He had his Hickman Line taken out in June as it was infected (he ended up with sepsis & a stay in ICU). However, the small clip which kept it in place under his skin was left in. It has since become detached and lodged itself on his collarbone. I had noticed it had become swollen but he said nothing to the doctor. It burst on Boxing Day and was clearly infected. I took him back to hospital the next day and he has been given a seven day course of antibiotics and the wound cleaned. His platelets had dropped again only slightly and we will be going back next Wednesday for further checks. So far the drugs seem to be doing their thing and the wound healing. He is however absolutely worn out which I guess is understandable with infection and head cold. As an aside has anyone else had issues with their line and in particular the clip?

    Alison
  • Rachelj01 Total Reaction Points: 64
    Hello Alison

    Gosh that sounds traumatic, it's good to hear you finally have some answers. My Hickman was stitched into place so I am unable to comment on a clip.

    I'm pleased to read that he is on the mend.

    Best Wishes

    Rachel
  • Allmount Total Reaction Points: 1
    Steve, Rachel
    I had to take hubby back into hospital yesterday and they’ve kept him in. His wound was not healing and he had become very fatigued and was a terrible colour. It would appear that the flucloxacillin was not working (even at 1000mg 4 times a day) and from blood cultures he has started to build up a slight resistance to them. His platelets had dropped to 26. He has had them now via IV together with fluid and platelets and he says he feels better. The doctor that took his line out visited last night and has told him that they will take the clip out while he’s in as future infections/problems can’t be ruled out. They’ve done all sorts of other tests and are happy with him. Although yesterday was upsetting as he thought his leaukaemia had come back and to be honest it was also at the back of my mind too. Thank you again for your support it is greatly appreciated. Here’s to a (hopefully) healthier new year.
    Alison
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    Hi Alison, I’m sorry to hear that your husbands infection isn’t clearing up as quickly as it should. It sounds to me like getting the clip out is a must and will probably help prevent any further infection or future recurrence. Once that’s done the antibiotics need to do their job and get the infection under control.

    I know it will be hard being readmitted to hospital, particularly as he had been doing well, but he will get the attention he needs there to get him back on track and they can react quicker with alternative treatments if the ones he is on aren’t working.

    The encouraging thing is that the fear of the Leukaemia returning can now be put to the back of your minds allowing him to focus on getting over the infection and continue his recovery.

    Please let us know how things progress.

    All the best,

    Steve
  • Allmount Total Reaction Points: 1
    Hi Steve
    We have had terrible news today. His leukaemia has returned and is very aggressive. Without any intervention he has weeks left. Further chemotherapy is not an option so the only thing left is antibody treatment. He has been discharged so we’re going to try and have as much as a normal weekend together as we can. We have a clinic appointment with his consultant on Monday to discuss any way forward. Whichever way you look at it, he only has a short time left. Iwe are both utterly devastated as he was doing so well. Life is so **** unfair.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 297
    edited January 5
    Oh no Alison, I'm so sorry to hear this and there's probably nothing I can say that will make you feel better as this is such devastating news. From what you'd said previously it sounded like the drop in platelets had just been down to the infection around his Hickman line site and that the Leukaemia wasn't the issue, so this must come as a huge blow and I can't begin to imagine how you both feel. My heart goes out to you both.

    I don't imagine replying here will be at the front of your mind but I hope you get this message and know that I and I'm sure everyone else is thinking of you at this time. I hope the appointment with the consultant on Monday is able to produce something that might give you a prospect of a positive outcome and that they can find a way to treat him a different way.

    As ever if there is any way we can help please let us know and the Anthony Nolan team are at the end of the phone if you need them.

    I send my best wishes and will be thinking of you.

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 80
    Hi Alison

    I am so sorry, I cannot imagine your devastation. You have both been through so much and you are completely right life is unfair. There is nothing that I can say that will make this better, this is the news that everyone dreads but I am here if you or your husband wants to talk. You might want the weekend to be together and think about what questions you want to ask on Monday but if you want to talk today or anytime and have questions my number is 0207 284 8229.

    Everyone on the forum will be thinking of you both and sending you our love. We are here to support you in any way we can.

    Hayley
  • Rachelj01 Total Reaction Points: 64
    Alison

    I am terribly sorry to hear your news. I know in times such as these very few words can offer comfort. I will be thinking of you and your family at this. We are here on the forum to offer support should you need.

    Rachel
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