Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I've asked Caroline this, but wondered if anyone has experience.
Is there a standard threshold level of platelets/haemoglobin when they advise having a transfusion. I was told it was 20 for platelets, but I'm not sure if that is patient specific or depends on illness. I have relapsed AML. Two weeks ago I had HB of 93 and told no transfusion needed. A week later HB was 85, they said I needed one unit, non-urgent 3 days later. Last test Friday I was 93 again but nurse thought I would need transfusion on Monday.
That was the end of the question, the rest is just me grumbling.
The Friday haematology nurse couldn't confirm I need a transfusion as at 5pm the SCT team had all gone home for the weekend. Now I will have to ring early Monday, hope I can get an answer, though I know the SCT staff will be tied up with a regular clinic. Then get a taxi if they give me a time to go in.
Apart from that I've twice been given different appointment times on the same day. Getting very stressed by it all.
please don’t stress! I’m not sure about platelet levels but believe haemoglobin levels are relative to how you are; daughter FELT rough around the 80 level but once went down to 65 and was ok; generally an adult woman is around 100+, possibly 120+. You will notice it’s low if you get breathless on exertion, eg climbing stairs. At that point it’s useful to report it, to get a transfusion. hugs xxx
Easy for me to write, but really hope you are able to control your mind racing. I was also told 20 for platelets and I was given transfusion when in the 70s. I’m really hoping you can get these counts kicked into shape Tessa.
Thinking about you.
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Thanks both, that's very useful. The man getting transfusion beside me was HB 77. I feel ok with HB in the 90s, was getting a bit breathless at 83, but I was cautious what I did. Helps to keep drinking water. Back in 2016 before diagnosis I was functioning at most things but getting tired. Then they found I was down to 63.
Good morning Tessa, falling below 80 has always been the trigger for my HB for transfusions.
Had my full bloods done a few weeks back and are looking good just my Platelets are at 142, just under the 150-410 level but they are happy with this as it may never recover into the middle levels.
HB is at 146 well in the 130-170 range.
I do look for you to get all fixed up with a positive way forward on this Tessa ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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