Anemia after transplant

Hello all,

I have been feeling unwell as some of you may know. My haemoglobin level has been coming up low every blood test. I have had about 3 blood tests over 3 weeks and the readings have been getting more and more lower. One of them had quite a significant drop within 4 days.

I just received a call from the GP to discuss with doctor regarding anemia.

Is this quite common after transplantation? Also what is the treatment for it as I understand iron tablets are not used after transplantion or am I making things up?

I will call my transplant coordinator next week after I speak to the doctor next Tuesday.

Thanks!

16 Replies

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  • Can't comment on the post transplant element but I do remember a lot of people on treatment on the Hepatitis forum I used to be on had low haemoglobin due to the meds. From what I remember it's not caused by iron deficiency, it's a lack of sufficient red blood cells, the ones that carry oxygen round the body. So symptoms were fatigue and breathlessness due to low oxygen levels. If it's this type you have then the treatment might be a blood transfusion to give you more red blood cells.

  • Thanks Bolly. I have been extremely tired and sleepy lately not to mention a little out of breath.

    I will see what the GP says next week. I do remember having a few blood transfusion after the surgery due to the same reasons but I think that was quite expected because I had heavy blood loss during the surgery. My husband had got a call to say that I was really poorly and the surgery was still on going but I was losing a lot of blood and they were trying to control that.

    Thanks Bolly!

  • Do you know your current Hb levels?

    I think below 12.5 is cause for concern, in some hospitals 7-8 g/dL triggers a transfusion, some wait til it goes to 6. By 5 its definitely alarm bells and action required.

  • Bolly I will get back to you about the levels tomorrow. Thank you for the advice!

  • Hi Bolly, my blood test result is 10.6

    The thing is, it keeps decreasing everytime I have a test. If it was low and stable that would be OK but it it just keeps decreasing.

    I will speak to the consultant on Tuesday!

  • Sounds like the docs need to face up to the fact it's decreasing and start looking for the cause so they can do something about it for you. Hope you don't get fobbed off with a "let's wait and watch" decision on Tuesday and something is decided on.

    I'm also back to the docs Tuesday, ALT has suddenly shot up so more bloods and review Tuesday.

    Doctors waiting rooms seem to be our second homes!

  • I'm sure that if it was anything serious post op then drs would see you before next Tuesday? Also wouldnt the hospital , transplant co ord contact you direct? How long ago was yr transplant?

    Best regards

  • Hello Mellow, I'm actually not worried. I was wondering what the treatments are for anemia after a transplant as I know after liver transplant, iron tablets are not an option.

    I had my transplant 9 months ago but it only feels like yesterday. I'm still recovering from it all as I had a very long recovery after it and I was very ill before it too.

    Also the blood tests were done by my local GP and not my actual hospital that I go to for appointments. Usually, you have to inform the transplant coordinator about things like this and then they will call GP. I will call them next week though to update. Another thing is, GPs do not have much idea about transplantations and even the anti rejection medications. In fact my doctor does not prescribe it for me. When I go to clinic they give me the supply. Once I find out, I will call the coordinator and then they will probably most likely make an appointment to see the consultant earlier than my clinic date which is in March.

    I am only worried because I have two young children and I really do not want to leave them and go 40 miles away. My daughter gets very anxious not to mention my husband's work getting affected but I have a huge support network so hopefully everyone will help out.

    Thank you

  • I'm suffering with anemia , when I was under the surgical team they did nothing even though it was showing up , but to be honest there more interested in the liver not rejecting n doing all its functions but when I see the blood docs now the first thing he noticed was I was anamorphic n put me on ferrous sulphate tablets ( iron ) n boy do I feel better no more buzzing muscles , headaches have subsided n feeling loads better so speak to your doc about it , I'm 5 mths post op now so maybe they wait but I'm not to sure , but definitely bring it up ))

  • Anamorphic is supposed to say anemic, this predictive test does me head in ...sorry x

  • Thanks retwos. That's odd isn't it that they think ignoring that fact is OK? We have to feel well over all.

    I went to bed last night and woke up shivering and feeling feverish and nauseated. I checked my temperature and it was 36.5 but I've already vomited 3 times and still feeling sick. This is how I felt about 3 weeks ago. I just called the hospital to bring my clinic forward but the secretary made me feel like I was changing it for no reason. When I spoke to Transplant coordinator she told me to bring it forward because my bloods showed I had an infection lurking around. Sometimes I feel nervous calling the GP or transplant coordinator. They sort of just leave you hanging and make you think you're worried for no reason. I wasn't extremely worried but I was really sick 3 weeks ago and the same now. I have 2 children and the last thing I want is to fall even more unwell and have me staying in hospital for days on end. The GP was the cause of my liver issues deteriorating before they actually saw I had become jaundiced. It annoys me when I remember how they gave me anti depressants and offered me benzodiazepam and this other drug thinking that would do the trick. The surprising part was I had had a blood test which showed very high LFT.

    Even when I was under the hematologist he sent me home with LFT increasing until I went back again and he apologised.

    Anyway hoping I get some help!

    I'm glad you're feeling so much better! We shouldn't be allowed to feel unwell after everything we have been through.

  • Oh that doesnt sound good, have you been able to bring your appointment forward? Have you been in contact with anyone who might have the diarrhoea and vomiting virus (Norovirus). It does sound like an infection of some sort, i guess the problem is working out what type and what treatment to offer? Hope you start to feel better soon rather than worse.

  • Thanks Bolly. My 2 year old had a fever a few days ago but no vomiting or diarrhea. It is so hard to find anyone to help sometimes and I really hate annoying the GP. They aren't brilliant either. If you can get past the receptionist you can maybe get a blood test and a week later a phone call. This is what I mean, the support is lacking.

    I managed to bring it forward to next Tuesday at 2pm so let's see how that goes. I will speak to the consultant about the lack of empathy some of the coordinators show. Some are lovely and last time she told me to not sit around feeling unwell again and to call the office if the GP isn't cooperating but then you get other scary ones who just tell you off like you're overreacting. I hardly even call and my husband feels angry when I just try to get on ignoring the fact that I'm unwell. None of us have an assertive nature and so it is hard to be firm with the professionals!

    Thank you Bolly!

  • Hi, jahida, I don't know if you have sorted your anaemia problem yet but just thought I'd let you know that I too have anaemia post transplant but I have been given iron tablets ferrous fumurate to take been on them for 3 months and my levels are 13 now and I have to stay on them to build up the bodies iron stores, does make a difference, hope you feel better soon 😀

  • I sympathise Jahida. Im rubbish at knowing when to go to the doctor, in fact my husband is like yours and eventually gets fed up and tells me to go - he is always right!

    We get bugs and viruses and infections just like everyone else, but when you have been as sick as you have (and me I guess) the tendency is to assume its 'the liver' and either wait for it to pass cos you are fed up with things going wrong connected to your liver and just want to be normal again, or we panic over little things that are nothing to do with 'the liver' and end up going to A&E for tummy ache, or the odd spot that appears on our skin. Its impossible to get the balance right, but it sounds like your consultant is on your side and even if the co-ordinators are not sympathetic she is higher up the medical hierarchy than they are, so don't ever feel guilty about asking for advice. After all, you have never had a transplant before so how on earth can you know what is 'normal' post transplant and what is not.

    Maybe you have the same bug as your 2 year old but due to your immunosuppressed state it has manifested with nastier symptoms, i dont know. The advice for normal healthy adults is, if you continue to vomit for more than a day, see a doctor!!! So if you are still vomiting tomorow, dont wait to see your hospital consultant, see your GP, or at least get a phone consult as if you are sicky you dont want to spread your germs (if it is a virus) round the waiting room. Failing that, dial NHS 111.

  • Hi Jahida, have you considered ringing the coordinators over the weekend to see if you can get into Mondays clinic?

    Most of them are good really, Julie I found the best to talk to, the one called 'Joke' can be abrupt and difficult to understand on the phone but she is lovely in person.

    So sorry you're Still suffering with this, it must be so difficult with two youngsters.

    Mike x

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