Hi there, I have been on W&W for 18 months now since I was told I had TLGL but in all probability it is 2 years as they were querying whether I had TLGL 6 months prior.
Anyhow, a couple of weeks ago, I had an almighty shock by developing Pneumonia and Sepsis. I am in recovery from this which I am thankful off.
My question is in relation to the full blood count that we all get . I have combined all my full blood count results onto a spreadsheet which makes interesting reading especially during my recent illness. I contacted my CNS @ Northwick Park Hospital to tell him that I was in hospital. All I got back was a text saying Hope you get well soon. I did speak to him and queried my full blood count in reference to the Lymphocytes which were low. He must have been confused as he said that they should have been a lot higher than what they were at. My question to the forum is should I press for a further full blood count to be done but by Northwick Park. My next Haemetology appt is in July which will be my last one there as I am moving back to Scotland soon. I am travelling back for this appointment but if I can arrange it, will try and get referred to a Scottish Hospital from then on of which I know of one that has been recommended by another sufferer and within has a Haemetologist who knows about TLGL which would be amazing. Apart from all this, I am doing okay, just bored out of my skull. Have a good week everyone.
Oh, @Jbeaver12 I am so sorry to hear how ill you must been with Pneumonia and Sepsis
I expect, if you are anything like me, it will take a long while to really build yourself back up.
Also I think moving back up to Scotland is a really big thing and when we just moved half a mile down the road and that was enough to wipe me out stress wise, emotionally, psychologically and definitely practically.
Perhaps just look after and be kind to yourself and for peace of mind ask for a full blood count by your GP or Consultant.
I am really glad you have found a Scottish Hospital that will suit you and your medical history.
The good thing about this forum is it does not matter where you live!!
Funny enough @Erica , it is a hospital that I used previously when I lived in Glasgow for my Bariatric Surgery checks. Hopefully I can be referred to this hospital. Not keen on going to the main hospital in Glasgow as that is where my wee maw passed away 2 years ago. Im taking things easy at the moment. I’ll give it a couple more weeks then ask for a full blood count to check on things. Im feeling okay now. I had similar 7 years ago alongside a Collapsed Lung and it took me a long time so just taking things day to day. Thanks for the reply @Erica
Hello @Jbeaver12
I am sorry to read you have been so poorly. Glad to know you are starting to recover.
Are you still in hospital at the moment?
Sadly, due to the workloads in the NHS some wards do not inform the specialist teams one of their patient’s is in hospital, unless it is directly due to the condition they specialise in. So calling your CNS yourself was good to alert them that you’d been on the ward.
When you are being discharged (or if you are already), you should get a printed discharge summary/letter for yourself and a copy to your GP. Hopefully it should say ‘recommended follow up’ on there, and if they think you need another set of blood tests or assessing again it should be written. Do clarify this with the ward doctor before you leave, or ring the ward and ask if you are already at home and weren’t give a discharge summary.
Take care, Heidi.