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Warning about high temperature

Topic Made On: Apr 23, 2012 09:23am
JackieR

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Gender: Female
Posts: 11
Following a bone marrow transplant for CLL last August, my husband has chronic Graft versus Host Disease (cGVHD). He is still on anti rejection drugs (immuno-suppressants) and was recently given steroids to help with his GvHD symptoms as they were so severe, thus lowering his immunity even further. At his last hospital out-patient appointment on Thursday 12th Apri, he was told he was neutropoenic and sent home....
On Saturday night, he awoke at 2am feeling unwell. I took his temperature, which was 39.8(!!!!), and told him we needed to get him to hospital immediately. He hates casualty on a Saturday night as it is full of drunks being sick and dripping blood everywhere. On every occasion we have been there, there has been blood on his trolley and table, and also on the floor and cubicle chair. I tried to get him to go in, and kept nagging at him until 4am, by which time his temperature had dropped to 39.6 - still immensely high. By 7.30 am he had collapsed on the floor and was in a dazed state. I had to call 999 for an emergency ambulance. His blood pressure was so low, his heart was unable to function properly and the hospital took over 8 hours to stabilise him. I was eventually allowed to see him at 3.45pm. By now, he was in intensive care, and on a life support machine.
My warning is this - take your temperature regularly, and make sure you act QUICKLY! We delayed by 5 hours and it almost cost him his life. He is off the life support now, but still in intensive care. He is completely weak and unable to stand, and we are told that his road to recovery from this will be a very long one.
And like others, the source of the infection and also the type of bacteria have not been found.
He is lucky to be alive - don't let it happen to you.




Replied On: Apr 25, 2012 04:49pm
Chonette

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Gender: Female
Posts: 24
Dear Jackie,
I am sorry to hear your husband is having such problems.
I had a SCT 3 years ago, and the cut point to phone the hospital in Swindon is 37.5 for SCT patients, patients are given instructions and they go direct to the inpatient area, they do not go to casualty.
When I was still in London during my first 100 days, I had to go back to hospital with a temperature, as soon as we got to A&E and my daughter said I was a post transplanted patient, they put me on a separate room until the haematologist came to see me, I was not mixed with any other patients.
I think it is very important that you talk to your medical team to point out this and try to make a better practice in the unit.
It is very important to monitor one's temperature regularly, I used to live with the thermometer in my pocket all the time and took my temperature daily even if I was feeling ok, just to make sure I was fine.
I hope he is feeling better.
Regards
Chonette



Replied On: Apr 26, 2012 11:13am
JackieR

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Gender: Female
Posts: 11
Hi Chonette.
Did you have donor stem cells, or did you get your own back? My husband had 'matched unrelated donor'.
Cut off point in Swansea (where we live) is 37.5 on two consecutive readings, taken 30 mins apart. Cut-off at Cardiff (where he had the transplant) is 38.0 on two consecutive readings.
Cardiff didn't have any room for him on the transplant ward, and our local Haematology Ward could only take him via A&E.
Whilst on the life support, he wasn't able to take his anti-rejection drugs initially as the medication in liquid form was not available until the following day. This caused me massive concern. I think it's only really the haematology staff who understand the complexities involved with his care. When he started to eat again, intensive care were giving him chicken sandwiches and yoghurt, which remained on his table all day in case he felt hungry. Thankfully one nurse who had worked in haematology had heard of the neutropoenic diet, and managed to sort it out for him. But you would think that it would be standard practice to offer patients in intensive care a 'pregnant woman diet' at the very least...??!!
I will speak with his (absolutely fantastic, kind, thoughtful, helpful, wonderful) haematologist, to see what we can do if the situation arises in the future. I know if it happens during the working day, the haematology day unit staff can get him admitted. It's just this out-of-hours thing that's difficult to get around.
Thanks again Chonette!
Jackie x



Replied On: Apr 27, 2012 10:19am
Chonette

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Gender: Female
Posts: 24
Dear Jackie,
I had a Reduce Intensity Allograft (unrelated donor), my donor was from Germany, they do not do auto (patient's own cells) any more as the preconditioning is very aggressive and the mortality rate was high, also most people relapsed, allografts have been done since 2001 with much better results.

Yes at the Royal Free in London the cut off point was 38.5, but that was 3 years ago, so not sure if things have changed.
Let me know if you like a phone chat to exchange experiences, as we live very close.
Chonette



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