I thought it might be an idea to start a new thread for the late effects and any problems folk get post auto and allo, particularly those which appear a year or so down the line.
After an allo then infections are common, particularly within the first year, the average for readmissions for this is three.
But after that some folk continue to get problems. Daughter has had immunoglobulin on and off to try to prevent infection. She went a complete year without and had an awful lot of problems, lots of antibiotics; they measured her immune levels at less than 1. Average ‘low’ is 6. So this last winter they tried hard to build it up, having I/G’s around 2-3 week intervals. She had her allo in September 2011.
today she has suddenly begun a nasty, painful, productive cough and raised temp. Fortunately she has an excellent GP who sees her fast and is interested in her history. Hope it gets sorted!
hugs xxx
Glad to hear your daughter is feeling better Moomy.
yes I have the flu vaccine every year.. shame there isn’t a cold vaccine as I am now 4 weeks into a mild chesty cough. It’s slowly getting better and I seem to be keeping on top of it it without having to call in the big guns. I keep munching the acyclovir and putting in the immunoglobulins!
Yesterday I had rebirthday number 6 and thinking back to when I had my transplant how 5 years in the future seemed a lifetime away. Looking back it seems such a short time ago but Another lifetime. I have done so much in that time and had such great times..
For those of you in the early part of your journey keep your chins up. Weeks soon become months, and months become years. Make sure you keep doing things and having fun as all of a sudden years will have passed and you will have some great memories to look back on!
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Hi Moomy
I use the Hizentra system which is subcut. I get the glass bottles of IG's (I have 20mls bottles x 2) which is 8gms of IG's - but dose will vary per person. I then draw it into a large syringe, attach the tubing to two 12mm needles on a butterfly. Stick them in to arms or tummy, secure with the sticky plastic covers, then load the syringe into a clockwork syringe driver. Takes about 40mins to deliver the 40mm dose.
They taught me how to do it and once you accept the fact you are going to needle yourself and it normally doesn't hurt (sometimes a bit of a sting!!) you just get on with and watch TV for a bit.
Much easier than trying to get to hospital. I dose myself every fortnight now. I was originally on 10gms of IG's in 50mm of solution once a week.
I am sure it has a saved me many times but of course I just haven't been aware of it. If I am going away for 3 weeks i just double dose before I go which the hospital are happy about. It just means I am always topped up so to speak.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Great news moomy.
