Operation Complete

I had my operation yesterday afternoon. Sadly there were complications removing the left kidney because blood vessels were difficult to get to because they were buried under large cysts. This resulted in the left kidney taking 3 hours to remove and at this point the anaesthetist brought a halt to the operation as she felt a further 3 hours for the right kidney would be too long for me and the surgeon to cope with. So its possible I will need another operation in the future to remove my right kidney.

But without the left kidney I should have significant pain relief and hopefully most of my back pain will be gone.

I stayed in recovery overnight after the operation as my blood pressure was very very low averaging 80/35. At one point they thought I might have a bleed and considered returning me to the operating theatre - but a surgeon was called out and decided there was no bleed.

My haemoglobin levels fell significantly after the operation due to blood loss and they ordered 2 pouches of blood to transfuse into me - thankfully I woke up as they were setting this up and managed to bring a stop to this. The nurse looking after me was unaware that a transfusion could limit my chance of getting a kidney in the future. Hopefully over the next few weeks my blood levels will return to normal without any blood transfusions.

The surgeon took a photo of my left kidney that he removed. It's here for your delight! Notice the ruler which is 15cms long and he said the kidney was actually bigger than in the photo when it had blood flow in it. I'm glad that's not in me any more and am keen to get rid of my right one if its anything like this one.

I had an epidural for my pain relief so am relatively pain free. This gets removed tomorrow so I hope alternate pain relieve is sufficient. Here's a few things to pray for :-
1. Thanks for the success in removing my left kidney
2. That swelling and bruising goes down quickly
3. Effective pain management
4. That Blood Pressure and Haemoglobin goes back to normal quickly

Thanks all for making this possible so quickly
And for your ongoing support and prayers.

Rob & Joybelle

Operation Tomorrow

Lots has happened since my last blog.

On 3rd April I got admitted to hospital overnight because of severe backpain. I was in hospital for 5 days until I eventually got strong enough morphine patches to control the pain.

By the second day in hospital Becki's fundraising site had hit the target of £6k - which meant we could start planning the operation. Amazing.

If you've not seen Becki's video here is the link.
http://www.youtube.com/watch?v=jPVA0rgR8HA
Since seeing this video the surgeon who will be removing my kidney's has asked if Becki would be willing to help produce some patient information videos.

Since being discharged from hospital we have managed my pain using the patches which I change every 3 days. I've spent most of my time resting and sitting up for more than an hour results in me having a lot of pain. Walking is still difficult at times.

Joy has managed to contact the hospital and get me booked in for an operation to remove my kidneys which is scheduled for tomorrow - 24th April 2013. The surgeon has agreed to remove both kidneys if he can - providing the first kidney comes out easily. I'm in hospital tonight and have had some pre op tests and an extra session of dialysis to prepare me for tomorrow.

Here are a few things to pray for :-
1. That the operation goes well and the surgeon is able to remove both kidneys.
2. That I don't have to have a blood transfusion - as this will impact my options in respect of future kidney donation.
3. For good pain management and a speedy recovery.
4. That Joy and the kids cope with everything this week.

Hopefully I'll be out of hospital by next Wednesday but until then Joy has given me a ton of sweets to keep me going. Although I can't have any after midnight tonight - so by my operation tomorrow afternoon I'll be starving!

We know we have lots of support from family and friends who are praying like mad for us - thank you all for all you're doing.
We're all still smiling because of your support and love.

Thanks
Rob & Joybelle
& the kids xx

Operation Needed

We were due to meet my urology consultant Monday last week but when we arrived for the appointment we found that he was on holiday and instead we saw his registrar.

The registrar dashed our hopes of a quick operation and told us my name wasn't even on the list yet for my operation to have my kidneys removed. Plus, he said he couldn't add me to the list until the urology consultant returned from holiday which isn't until next week. It could be 3 months or more before I get an operation scheduled.
The good news was that he believed both kidneys cold be removed at once by looking at the CT scan. The scan revealed that my kidneys completely fill my abdomen space - they are huge.

Over the last 3 weeks I've had increasing back pain and moved from cocodamol to a stronger codine pain killer, then on to tramadol and I'm currently on morphine patches and also tramadol - although after 3 weeks this is no longer dealing with the pain and I am in serious pain every time I move. Sleeping is difficult. Moving in and out of bed causes excruciating pain. I tried to go to church on Good Friday but the pain was too much and we came home. I managed church on Easter Sunday because my daughter was coming with me - but it was very painful and tiring so until I get some better pain relief I'm not moving very far and am housebound other than for dialysis sessions. The doctor has just doubled my morphine prescription and added diazepam - lets see if this has any effect tonight.

We have discussed having home dialysis which was seen as a very good step for me by my nephrology consultant and the dialysis team - so we'll have a meeting to check out the house and may get the equipment installed by June. This will enable me to dialyse every day for two hours which will give me better blood filtration and reduce some of the restrictions in my diet and fluid intake. Home dialysis will require Joybelle to be my carer as you're not allowed to home dialyse without someone else present to support you.

Becki (my step daughter) saw me struggling to get out of bed today and has decided to try and do something to help. She wants me to get the kidneys removed ASAP in a private hospital. She doesn't want me to put up with the intense pain or have to wait 3 months or more for an operation. We've found out a cost of £6000 and she's setup a donations page on the Internet. If she manages to raise the money then I will go private for the kidney removal operation.

This is the link for the fundraising website Becki has setup - http://www.youcaring.com/medical-fundraiser/raising-for-rob/50815

Thanks for your continued support and prayers.

Rob & Joybelle

Progress Update

I've been using my fistula for dialysis for 2 weeks now. The first two times it was used the vein blew and I ended up with a very fat arm full of blood. I've still got huge bruises on my arm nearly two weeks later.
I've been using my fistula without too many problems for dialysis 3 times per week until today. Today when I got up I noticed that I had a large lump in my fistula and it had stopped buzzing. I went into hospital (like I've not seen enough of the place recently!) and the lump eventually dispersed and blood started flowing again. I've got to go in tomorrow for an ultrasound investigation to ensure everything is ok. They aren't sure if there is an aneurysm in the vein or if blood has just leaked out of the vein into surrounding tissue. This means they can't put needles into it yet and they've had to cancel my dialysis tonight - I will get dialysed after the scan in the morning.

On 5th March I got a second infection which resulted in very high temperature, shivering and heart palpitations. I got sent to A&E and spent one night in their being monitored and given lots of antibiotics - then had to stay in a further night on Acute Admissions ward. I didn't get very much sleep at all over the two days and was really glad to come back home.

Because of the infection my consultant decided it would be best if I had my neck line removed as this is often how infection is acquired - so I had a mini operation on Thursday to remove the line in my chest. It's nice that its gone - but does mean I have no backup if my fistula has further problems.

I had a CT scan on 7th March - a surgeon has asked for this so that he can better understand my anatomy and make informed decisions about how to remove my very large kidneys. If the CT scan shows no complications he might take both kidneys out in a single operation. Having no kidneys at all will mean I am totally dependant on dialysis to regulate chemicals and fluids in my body. My kidneys need to be removed so that there is space for a new kidney when one gets offered from the national waiting list. I am also in significant pain in my back and sides from my kidneys pushing other organs out of place in my abdomen - so removing them should result in an improvement in pain symptoms.

I have an appointment on 25th March to discuss my CT scan and agree an operation date sometime in May to have one or both kidneys removed.

It does feel like my health has got more inconsistent over the past two months with several complications caused by my kidney disease. I'm still not working proper hours and until I get more stable I can't see that changing. From April I will drop to half pay which will present yet another set of challenges. But I'm remaining positive confident my issues will right themselves and all things will work together for good for those who love The Lord.

Thanks for all your ongoing support and prayers - its your support that keeps us going.

Rob & Joy

Nephrectomy Operation Planned

I've been on dialysis 8 weeks now. I'm still getting tired very quickly and work has said they are unhappy with me doing more than 6 hours per week.
I was hoping I would be getting back to work full time by now - but I still don't have he energy and my back pain often makes it difficult to stand up straight.

I had an operation to create a fistula at the end of January and hopefully it will be ready to be used sometime in the next 5 weeks. Using a fistula will enable the dialysis machine to run at a much faster pump speed which means I should get better filtration in my 4 hours on the machine as the blood will go round faster and therefore get more filtering. I'm now pinning my hopes on feeling a lot better once I dialyse via my fistula.

The fistula is very cool - it buzzes the whole time.

I had an appointment with a Urologist this week to discuss removing one of my large polycystic kidneys. This should ease my significant pain and will also ensure there is room for a transplanted kidney when one gets offered from the national transplant waiting list.

The Urologist was happy to remove one or both kidneys depending on my anatomy and the complexity of the operation.
He said there was a chance they may need to remove my spleen and whilst this is not a major problem it would mean I would have to take antibiotics every day for the rest of my life to maintain my immune system. Another miraculous body part that filters blood, manages red blood cells and reacts to illness in the body sending healing cells and extra blood to the right place - clever God.

So next on the list is a CT scan - which I am keen to have as it will also allow me to see how badly impacted my liver is - currently I have not been formally diagnosed with polycystic liver disease but on ultrasound scans in the past the radiologist has been fairly sure I have cysts on my liver. Thankfully polycystic liver disease rarely leads to liver failure.

My nephrectomy (kidney removal) should take place sometime in May this year.

So looks like I will be off work for even longer and I'm now close to having used 6 months sick pay so I will reduce to 50% pay which will need some serious adjustments in our monthly budget.

Please pray
1.That polycystic liver disease will be at an early stage when undergo my CT scan with no likely consequences in my lifetime.
2. For a quick nephrectomy operation so I can start getting better ASAP.
3. That my spleen won't need to be removed.
4. That on half pay we can manage our finances to stay out of debt.

The more I learn about my body the more in awe of God I am. I am definitely made in a wonderfully and complex way.

Thanks for reading.
Rob and Joy

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