Immunosuppression anti-rejection meds

[Feline]

Been doing a wee bit of research on anti-rejection meds and have come across these informative sites...

http://www.lhsc.on.ca/transplant/drugs.htm

http://www.sltu.org.uk/hbrejection.htm

http://en.wikipedia.org/wiki/Immunosuppressive_drug

[davidgould]

Hey,

I have found this site really helpful recently.  I'm a medical student doing some research into kidney transplant patients and how adolescents make the transition to adult care.  I'm particularly interested in the website because of the way all of the transplant families communicate about what is going on.  Everyone seems really clued up and this is a fantastic resource.  I was just wondering, does it get used much by the kids or is it mainly the parents encouraging one another along. 

How many people do you get using the website and do they do it regularly?
Do you think I'd get much of a response from parents if I did a survey asking questions about how they were preparing their child for looking after themselves by self-medicating...?

I also work at the Science museum and have access to lots of equipment which I can use to make podcasts.  I am interested in building up a webpage myself where children, particularly those who have had transplant, can help other children out by recording how things went for them, and how they have got used to living life with a new organ. 

Any information you can provide me with would be very useful, I would be happy to organise a more formal questionairre which I could put out online if you think I would get a good response.

Regards,

David Gould (2nd year medical student interested in transplant)

[Feline]

Hi David

***** Welcome to Transplant Kids! *****
I wish it did get used by kids more,that was the initial idea when setting it up! Still it has become a nice wee community for parents there are a few kids but not many they tend to be more difficult to entice!
We get a fair few folks using the site many just passing through but we have a regular few popping in and leaving messages.
I'm sure most in here would be happy to help you in your survey...what d'ya reckon folks?
I think having kids own experiences of their journey to and after transplant would be terrific,I know my own lad's truly appreciated meeting up with other transplant kids(TACKERS,BTG's and most recently GIFT camp)

Transition and self medicating is something some of us in here will be looking ahead to right now!

Let us know if there's anything we can do to help...

Cat x

(Mum to Aaron aged 10,liver & small bowel transplantee Birmingham Childrens 2000)

[kerry]

Hi David

please feel free to ask any questions, we would be happy to help.  I usually check the website once a day.  My son George is only 6 so he doens't use the site.  i'm sure he will when he gets a bit older.

you could contact the transplant sports association, they have a 1000 transplant recipients taking part in the edinburgh games this year.  they may be able to ask their members if they would be willing to take part in a  questionnaire for you.  http://www.transplantsport.org.uk

Kerry

(Mum to George aged 6, heart transplant GOSH 2002)

[Bec]

Hi David, very nice to meet you and so glad you are interested in Transplantation. I think it would be an honor to help you with your survey as hopefully you may one day help others who face transplantation. We are coming to London in 2 weeks time and usually go to the Science museum, but I don't think Eloise would be much use for one of your podcasts as she was transplanted at 21mths so knows no other way of life. Eloise is very good at getting out her own medication she knows which ones are due when and how to cut them up, we also taught her to swallow tablets and capsules at an early age.She would love to totally self-medicate but as she is only six we prefer to supervise her.Goodluck with all your studies if you require any help please feel free to ask. I am also a paediatric nurse at Bristol childrens hospital where renal and bone marrow transplants take place.
                                               Rebecca
(mum to Eloise ABO mismatched heart transplant 10/06/2002  at Freeman hospital now a patient at GOSH)

[thegablecottage]

Hi David,

We'd be happy to help too - anything to help the bright minds of the future to give other children a much needed second chance at life !

Our son James received a small bowel, large bowel and liver at the age of 3 1/2 years old (Jan 2005) at Birmingham Children's Hospital. He was a perfectly healthy child until age 2 1/2 when with no warning he suffered an acute volvulus and lost all but 5 cm of his small bowel, and half his large bowel. He then suffered multiple organ failure, but against all odds survived everything thrown at him, and now, post transplant, has regained his life and is an extremely happy, bouncy 5 year old.

If you need anything at all let us know.

Charles, Jane, James, Lauren & Millie

[APFC]

Hello David

I am impressed by your extra curricular interest in this subject.

We have all become armchair clinicians... not by choice but by necessity.

Our daughter had her heart transplant at just 13 weeks old.

She is now 17 months and is doing very well.

Adrian

http://shannonsgiftoflife.blogspot.com/

[Emmie]

Hi David

I have just emailed you about this. It's great to see a medical student who is clearly so inspired and interested in the field of transplantation. Hope to hear from you soon!

Emma

Live Life Then Give Life Campaign Manager: www.livelifethengivelife.co.uk
Trustee of GIFT - The Children's Transplant Charity: www.giftctc.org.uk

[Molly]

Hi David,

I am a patient who has been using this site regularly since a parent recommended it to me a few months ago.

I am 16 and received a small bowel, liver and pancreas in November 2006 at Birmingham Children's Hospital.

I am currently beginning to make the transition to adult care at Addenbrookes in Cambridge, however my care will not be totally handed over for another 2 to 3 years.

If I can help at all then please let me know.
Molly x

[Feline]

Was looking for info on immunosuppression again for a parent worried about side effects/interactions and came across this one which is very informative...

http://medguides.medicines.org.uk/document.aspx?name=Organ%20Transplantation

[marinegirlz]

I found this site very interesting as i am on several anti-rejections myself. Though i should be off them in a years time.

[Molly]

Won't you have to be on antirejection meds for life Emily?

Moll x x

[Emma]

I didnt know that you would be comming of your antirejection medicines, all the medicines i'm now on are for life.
Emma x