Dialysis Progress

Dialysis is going well. I'm feeling much better and have more energy. I'm not sleeping in the afternoons anymore and am hoping to go back to work soon.

I've just finished a course of vitamin B12 injections which should help my energy levels improve further.

The fluid restrictions are quite harsh - I can't drink more than about a litre of fluid each day - and that includes gravy, soup, jelly, yogurts, etc. That's probably the worst thing. Most of my other blood levels are fine so the rest of my diet is unaffected at the moment.

My fistula operation was cancelled on 27th Dec because the ultrasound showed my veins were too thin in my left arm. I have another scan next week on 24th Jan to scan my right arm. Hopefully they will get on with the operation quickly after this.

The line in my neck that is currently used for dialysis is now 5 weeks old. At times blood flow is very slow through it. A fistula will allow much faster blood flow and therefore better filtration during dialysis.
Yesterday my line completely stopped working at the end of my dialysis session - it took a hour to get me off the machine - during which a very large blood clot was extracted from my line. My blood flow is still poor so its possible there is still some blockage in the line.
They have started using a special lock to try and clear the blockage and yesterday I had an infusion of something (I think is was Urokinase but don't quote me!) to try and help ease the blood flow. The idea of large blood clots in my line doesn't exactly thrill me but I'm still breathing so I've got to believe God is in control.

I'm hoping to get a urology appointment with a surgeon soon so that I can discuss a nephrectomy to remove one of my failed kidneys.

I'm trying to get the most out of the rest time I have on dialysis. I am reading books and email and watching iplayer etc. Everyone is very friendly at the dialysis centre and all of the nurses are brilliantly helpful. It's not as daunting as I thought it might me.

I'm still believing for a transplant from the national waiting list - but this does limit how far I can travel from Bristol. So no trips abroad for me in the near future.

We have decided to plan a holiday this year and have booked a week in an apartment in Torquay. This was complicated by needing to also book holiday dialysis but we are all sorted now and have something to look forward to in the summer - just praying for a week of sunshine when we go away to the wonderful English Riviera!

Thanks for all your support and prayers.
Looking forward to the day I receive a kidney.

Rob & Joy

Books read in 2012

My target I shared in a Facebook post at the start of this year was that I was aiming to read 6 books this year to stretch and develop me. I also said if I could even manage one per month that would give a great total of 12.

Well I've surprised myself by managing to read 12 books which is brilliant especially as I couldn't read very much for 4 months of the year because my kidney disease has impacted my ability to concentrate. I also hit my target of reading through all 21 books of The New Testament.

Need a bigger target for 2013 so am aiming for 20 books + 39 books of The Old Testament.

Now I'm on dialysis I feel a lot better and more able to concentrate which is excellent news.

Below is the list of books I've read this year. All great reads (except for the last two you have to be a techie!)

Why not aim to read one of them yourself this year?

The book that has helped me become more effective with my time is Getting Things Done.
The book that had the biggest emotional impact on me was Tuesdays with Morrie.
The book that I believe will have the most potential to impact my life in the future is 21 Irrefutable Laws of Leadership.

1. IT: How Churches and Leaders Can Get It and Keep It
By Craig Groeschel
Amazon Link

2. Getting Things Done: How to Achieve Stress-free Productivity
By David Allen
Amazon Link

3. 21 Irrefutable Laws of Leadership
By John C. Maxwell
Amazon Link

4. Courageous Leadership
By Bill Hybels
Amazon Link

5. Amplified Leadership
By Dan Reiland
Amazon Link

6. Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson
By Mitch Albom
Amazon Link

7. StrengthsFinder 2.0
By Tom Rath
Amazon Link

8. Please Understand Me II
By David Kiersey
Amazon Link

9. TA Today: A New Introduction to Transactional Analysis.
By Vann Joines, Ian Stewart
Amazon Link

10. The Me I Want To Be
By John Ortberg
Amazon Link

11. Asterisk: The Definitive Guide
By Leif Madsen. Jim Van Meggelen, Russell Bryant
Amazon Link

12. Beginning iPhone 3 Development
By David Mark, Jeff LaMarche
Amazon Link

Already on the list for 2013

1. Winning with People
By John Maxwell
Amazon Link

2. Adventures in Missing the Point: How the Culture-controlled Church Neutered the Gospel
By Tony Campolo, Brian D. McLaren
Amazon Link

Dialysis Week 2

Well week one of dialysis went very well. It was something I guess I'd feared it and wanted to avoid needing it - but actually it all seemed very simple and well organised.

I am now committed to dialyse three times per week until I get a new kidney from the national transplant waiting list or God works a miracle and my kidneys spring back into life!

I had thought dialysis would be something I had to endure and keep my eyes looking toward a future hope when I got a new kidney and could start living life normally again. It's felt a bit like that this year as we've waited for tests on people who offered to donate. I feel like I've spent 2012 waiting for the right result - life's been on hold - and I never got the result I was expecting.

But I've realised this thinking is flawed. If I choose to limit my life until I am dialysis free I will not achieve all that I could. I have made the decision that rather than looking at freedom from dialysis as my destination - I will accept today as my destination. Dialysis will be a part of my life but it will not define what I am capable of. I intend to enjoy the journey over the coming weeks.

So I have 4 hours on.a Monday, Wednesday and Friday where I have to be connected up to a machine. This gives me more time than ever to read books, catch up on email, relax and watch a bit of TV. Bet you wish you had all this free time!

My consultant thinks it could take up to 6 weeks before I start feeling the full benefit of dialysis. Currently my haemoglobin levels are very low. This is being addressed with weekly EPO injections (http://en.wikipedia.org/wiki/Erythropoietin), fortnightly Iron infusions and daily vitamin D supplements to help my calcium levels improve.

Currently I dialyse via a neck line, but on the 27th December 2012 I have a fistula operation booked. (http://en.wikipedia.org/wiki/Cimino_fistula) The fistula will take 4-6 weeks to mature and once ready my neck line will be removed and I will dialyse via the fistula. Eventually after about 6 months it is possible to have a Haemodialysis machine installed at home to avoid the hospital visits. We may consider this in due course,

At the end of January 2013 we plan to ask about having surgery to remove one of my very large polycystic kidneys. If possible it would be good to get this done ASAP as it would reduce pain and enable me to eat bigger meals. But if there is still residual function the hospital are likely to be reluctant to take one out until its doing absolutely nothing useful.

Thanks for all your support its been brilliant knowing so many people care about us and are standing with us in prayer.

Thanks

Rob & Joy

Just a Thought...
Don't put life on hold and wait for circumstances to be perfect - they never will be. Make today your destination not some future time when you think everything will be perfect. Take that step of faith now and do something new. Live life to the full now. We all have issues in our lives - not letting them define us is a challenge I encourage you to take up with me today.

First dialysis

I saw a consultant for my fistula operation on Monday and have an ultra sound booked for Thursday lunchtime. Hopefully I will have a fistula operation on 27th Dec.

Today I had a central venous catheter installed - not an especially pleasant procedure. Then I had an X-ray and my first 2 hours of dialysis. It took all day. I start dialysis properly tomorrow. The only available dialysis slot was Mon Wed Fri 4-9pm that should be ok especially when I'm back at work which is good news.

I don't feel much different after today but hopefully after Friday's dialysis I will start feeling better.

I've got a free hospital parking permit which is a bonus as parking costs a fortune at the hospital.

All in all not a bad day really.

Amazing that our tiny kidneys that God created in us can do a 10x better job that all this man made equipment. We are living miracles, thank you God

Dialysis Begins

I saw a surgeon today about a fistula operation. I have an ultrasound scheduled for Thursday to map the best fistula location on my arm.
The surgeon has an available slot to conduct the operation on the day after Boxing Day - 27th December. It will take about six weeks for the fistula to mature and become usable.

Whilst at the hospital we saw my consultant and explained my increasing symptoms which now include sore feet, ankles and hands due to the increased level of toxins in my bloodstream and some breathlessness when climbing stairs etc. My kidney function has slightly improved its likely this is due to the fact I am eating less. My Haemoglobin and White Blood Count have all dropped and I am now slightly anaemic. In view of this he agreed it's time to start me on dialysis via a line in my neck.

This is scheduled for tomorrow - Tuesday 11th Dec at 11am. They will insert the neck line and give me two hours dialysis. I will then attend one of Gloucester's two dialysis centres 3 times per week. We still need to work out how this will fit into our life as its a significant change in routine.

Once my fistula is usable the neck line will be removed.

Thanks for everyone's support and prayers so far. This next stage in my kidney failure is rather scary and daunting as we adjust to the change this will bring to our family life, so we would both appreciate prayer for protection over us and your prayers that all goes to plan and I avoid infection whilst I have the neck line in as these are prone to infection which can be serious.

Still believing for a transplant - in God's timing.

Rob & Joy

Kidney Function Update

Was thinking I would begin dialysis Monday or Tuesday next week.

I had a blood test at the start of this week and still haven't got all the results but I phoned the hospital to ask for my creatinine level.

Last blood test I had creatinine of 593 and 9% kidney function.

We were expecting it to have increased and my kidney function reduced but as of this week my creatinine is 517 which is a kidney function of about 11% so an increase of 2% - amazing :)

Not sure if its down to the fact I'm eating less and therefore there is less for my kidneys to process but it means no dialysis for me this side of Christmas :)

One very Happy Household here in Bittern Avenue ;) ;) ;)

Sandra's Results - Part 2

We finally got Sandra's results today and it was bad news :'(

Sandra's kidney has blood vessels that would make it too difficult to remove and the hospital rightly have to consider her health as a priority. An operation to remove her kidney could be dangerous for her.

We are obviously gutted and so too is Sandra.

We've put forward five potential donors and none of them have been able to progress to donation.

It's hard to find words to express our disappointment after a whole year of testing it feels like we've not made any progress.

But it begs the question WHY. Why have none of the donors been successful? Why have we made no progress? Why have we gone through this? Why do we believe in a God who has the power to heal in an instant and yet not seen healing?

And if we've made no progress in terms of health what progress have we made in other areas of life as a result of our journey so far?

We have a good understanding of kidney disease. We understand better the impact of a disease on life - and I hope as a result we will be more sympathetic and supportive to people we meet in the future. No one asks to be ill or have the physical, psychological and practical impact on their lives.

In comparative terms kidney disease is not the worst illness to have to deal with - it is treatable with dialysis and (hopefully) transplant.

We are both independent people who don't like to have to 'need' others - so one thing we've learnt is to ask for help, to depend on our friends and family more.

Joy was healed by God a few years ago so she is helping keep us strong and reminds us regularly that God loves us and has a plan for us.

Our faith is challenged some days but as we push through each day we draw strength from God's promises that he will be our provider.

Genesis 22:14 (NLT)
Abraham named the place Yahweh-Yireh (which means "the Lord will provide"). To this day, people still use that name as a proverb: "On the mountain of the Lord it will be provided."

The next step is to get onto dialysis and wait for a kidney from the national transplant waiting list which could take a number of years.

Joy is convinced that God wants me to have a better matched kidney. Sandra was only 1 match - Joy believes I will end up with 5/6 matches when I eventually get a kidney. I'm living off Joys faith some days. I am still working through the why questions?

Our Connect group at church are great in their support - they are all praying and fasting this week. It means so much to have their support.

The hospital are now planning a scan of my arm so they can decide on the best place to put a fistula. An operation to put in a fistula will then be scheduled. The fistula takes 6 weeks post operation before it can be used for dialysis.

If I need dialysis before my fistula is ready the hospital will install a temporary access line into my neck.

Dialysis will be three days per week once I begin. It should give me some of my energy back and help me feel better.

Thank you everyone for your love and support - we couldn't get through this without your support.

Rob & Joy