Monday, 30 January 2012

Cross Match Results

Good meeting today with surgeon.
I'm now on the national deceased transplant register.

They've checked out my kidneys and believe there is space on the left for my transplanted kidney. On my right my kidney is too big so there is no available space.

They've also said I am fit and well enough to transplant so another tick in the box.

The only slightly disappointing thing is that I only got 1 out of 6 matches in the cross match testing. 1 is still good enough to proceed but is less than we'd expected. We now need to make a decision. Do we :-
1. Proceed with Sandra's donation - current favourite option
2. Go onto dialysis and wait for a better match from the national organ donation system. Least favourite option. Could be a six year wait.
3. Go on the paired exchange scheme to see if someone wants to swap a better matching kidney - could be a long wait.
4. Go on desensitisation programme and see if Joy is better match - still early days for this technology - probably not an option.
5. Check if blood relations are better match now that genetic screening is an option?

So lots to still think about.
Staying positive - this will all work out.

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.

Status Update

Kidney Function : 19%
Weight : 13' 10"
Symptoms : swollen ankles and feet, difficult to stand and walk at times, hiatus hernia and restricted stomach space due to size of kidneys and liver, sore at times and unable to lie on sides in bed, some back pain, tired by 6pm most nights and if I'm not out will try and be in bed as early as possible. Love sleep!

Don't really like thinking about operation and future. I don't do needles of blood and guts! Have to turn away from TV when Joybelle and Beck are watching Holby City!
Just want operation to be over and get life back to 'normal' what ever that will be.

Amazing that Sandra is Willing to give a kidney - if she didn't I would definitely end up on dialysis whilst waiting for a donor from the national transplant system. Sandra hardly knows me and there is no reason why I deserve her kidney - amazing - like the free gift of life given by God.
God is my provider and sustainer Psalm 23:1 I will not be in want.

Appointments :
17/01/12 - living transplant cross match tests with Sandra
27/01/12 - cardiogram
28/01/12 - PKD patient information day in Leciester
30/01/12 - meeting with surgeon who will do my operation
30/01/12 - deceased transplant team
31/01/12 - meeting with occupational health to discuss home working 1 day per week.

First Post

Planning to blog some stuff here about my journey with Polycystic Kidney Disease (PKD).
Also writing this stuff into a paper journal.

To start at the beginning....

I had a routine medical at work in around 2002 which highlighted very high Blood Pressure (BP) - it was 220/129!

Doctors spent 4 years trying to keep my BP under control and eventually in around 2007 (I think can't remember exactly) sent me for an ultrasound to see if my kidneys were ok. They found lots of cysts on my kidneys and referred me to the renal team at Gloucestershire Royal Hosptial (GRH). I had six monthly check ups to monitor my kidney function. All the time the Nephrologist's said to live life normally as I had at leas 10 years before anything changed.

In October 2010 I married Joybelle - she has made my life complete - I've never been happier. We went together to a renal check up before we got married and the Nephrologist still said it would be 8 years based on my current kidney decline. Me and Joybelle looked at the figures and thought it would be sooner. After we got married and went back to the Nephrologist for a routine appointment he agreed that it was looking more like two years until End Stage Renal Failure (ESRF) - great news - not!

When Joybelle's family heard amazingly her sister Sandra offered to donate a kidney. This was incredible as I hardly knew her and yet she was willing to give me a fantastic gift which would give me life free from dialysis.
If I needed dialysis I would be tied up 3 days a week at least and limited in where I cold travel and the hours I cold work having a massive impact our lives.

This blog will chart the progress of the kidney transplant operation. It is primarily written for Sandra's children so they can get some insight into my journey. I will be forever thankful to Sandra their mum for giving me the chance to continue my life dialysis free.