Sunday, 29 January 2012

Status Update

Status Update

Cross match tests on 17th January were good. They took about 10 lots of blood from me and Sandra. Sandra also had an ECG. Living transplant coordinator was brilliant and her best friend does the same job in the hospital that Sandra will use for all her tests and monitoring after donation. This is really good news because sometimes communication between hospitals is not great - this will ensure it is good. Joybelle's mum came up on the train with Sandra and Brenda and Tim met us at the hospital - great to have so much support.

Transplantation pathology is complex. Here are a few sites that helped a little - but it's still confusing.

Basically there are 6 antibodies that are critical in transplantation.
The crossmatch test will see if my six match Sandra's six. The more that do the better matched and therefore better chance of the kidney lasting longer. Also any that don't match will mean in the future they absolutely have to matc as you can only have a non matching antibody for each of the six once in your life. So the more that don't math the more difficult it is if I ever need a second transplant.

Results for hospital transplants are as follows
Living Donor : 96% after 1 Yr, 94% after 5 Yrs, 90% after 10 Yrs
Desensitised : 90 after 1 Yr, 88% after 5 Yrs, 85% after 10 Yrs
Deceased Donor : 92% after 1 Yr, 86% after 5 Yrs, 65% after 10 Yrs

Even with a perfectly matched deceased donor a living donor with no matches has longer life.
It is also possible for a donor with non matching blood type to donate through using a process to desensitise my body to the blood type difference.

Asked at work if I could work from home on Wednesdays as I'm getting tired by Thursday and this would help me maintain energy levels. Boss has referred me to occupational health - yet another appointment to add to my growing list!

On Friday 27th had heart cardiogram which is basically an ultrasound to ensure my heart looks ok. Feedback was that it looked fine. Likely to get an appointment for a heart stress test next.

On Saturday 28th went to Leciester for the weekend and attended a PKD charity patient information day.
Lots of people there and gained some useful information such as:-
1. Liver unlikely to fail although it will get cysts - if it gets to big cysts can be drained or part of liver taken away
2. Good research is taking place and likely to find a cure soon to slow down cyst growth - lots of clinical trials and studies underway - hope this will be I place for Joy and Jake if they find they have inherited the disease.
3. Got a better understanding of the genetics of the disease - Joy and Jake have a 50/50 chance of having it. :( it is possible that I am the first in the family to have the disease as this happens to 5% of people who have it. If Joy and Jake don't have it then it stops there - it can't skip a generation.
4. Orange Juice is high in potassium so I should avoid drink it if possible. Kidneys regulate potassium and phosphates so should avoid foods high in these such as Bananas etc.

Good to meet others with PKD and people who'd had transplants or donated kidneys and they all appeared to be fit and well.

On Friday night in Leciester we watched a movie called the descendants about a terminally I'll mother - supposed to be humorous but quite depressing and made me wonder what would happen to Joy and Jake if I didn't make it through the operation. What physiological impact would it have on their futures - but gonna stay positive. Have God on my side.

In the bible it says be strong and courageous because God is with you (Joshua 1:9) believing this this week.

Appointments :
30/01/12 : Surgeon
30/01/12 : deceased transplant coordinator
31/01/12 : occupational health

Sandra has several appointments locally for tests - these tests have been booked ahead of knowing the cross match tests which is really good.

Still believing for 6 out of 6 matches in the cross match tests. Lots of people praying.

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