Living with kidney disease, dialysis and a transplant

Hi… I’m Amanda (see what I did there!!) and this is the blog post I’ve been both looking forward to, and kinda dreading. A (condensed) story of my kidney disease, dialysis and transplant journey. (Oh, don’t worry, I’m be blogging about the trials and tribulations of being a diabetic another time!!)

Just a quick note before I launch into this extremely personal and emotional story (totally laying it on think here!!) I’d like to remind you that I may joke and appear not to take my conditions seriously but I actually do respect my health even with all the humorous asides! My theory is that most of my life is so serious that if I don’t have to be then I won’t. I mean, in the past 6 years Ive been diagnosed with Chronic kidney disease, a detached retina, started dialysis and had a dual kidney and pancreas transplant. (Wow! It’s sounds so simple when I put it like that, doesn’t it!?!). I need some comedic relief!

So anyway, back to business. I bet you’re wondering how I found myself in this situation, well grab a cuppa, get comfortable and I’m going to tell you allllll about it!

It all began when I was diagnosed with diabetes at 13 years old. They (the doctors, dieticians etc etc) told me that people with diabetes face a number of potential health complications (I can’t be sure but I’m betting my response was my signature eye-roll and a flippant “yeah right! As if that will happen to me”). I didn’t develop any of these until my mid-twenties, and most of them were eye problems. As of right now I’m totally blind in one eye and my other eye is…. well it’s temperamental to say the least lol.

After first eye surgery

I’m on first name terms with everyone in my local Specsavers, as well as my ophthalmologist who calls me “that nice girl who was diabetic” (no really, it’s on my consultant correspondence ??)

Around August 2012 I had a routine blood test which flagged up that my GFR was 39%. It should be over 60%. That doesn’t sound too bad, does it? Well no, but then they explain that that’s the % your kidneys are working at and then ‘kidney failure’ and ‘dialysis’ are mentioned and the panic sets in.

Fast forward through a lot of googling (And a bit more panicking because OMG don’t google anything medical when you’re worrying…ever!!) and a bit of crying, to my first clinic appointment. They told me I was a candidate for a ‘pre-emptive’ pancreas and kidney transplant which meant the transplant would be done before the need for dialysis. This would have been a very (very very) good thing…..had it actually happened that way!

It turns out the reason they were suggesting a double transplant was that if It was just a kidney on its own, still being diabetic would gradually have damaged the new organ and I would be back on dialysis much sooner, it made sense, although it also was a more complicated operation!

Originally, they estimated I would have 18 months to two years before I reached the point of needing dialysis. Finally some ok news, I’d have time to get used to all this new diet and stuff and maybe not even need dialysis! Wow. How naive was I!?! I actually only got 9 months.

I ended up getting my dialysis access placed in January 2015, and began dialysis at home in the March. As a result of this I was on the PD machine for 8-10 hours every night.

Ok. I’m going to tell you what really worried me about the dialysis, it wasn’t the pain (none really to be honest), or the operation to get it in or the high risk of infection and having to keep everything sterile… it was how it would look.

I think there’s a lot of stigma about dialysis in general. There are about three pictures on the entire internet of what the PD catheter looks like post-placement. (Yeah, I totally googled that for hours!). That’s what scared me the most, what I would look like? If you google it there’s only diagrams and drawings of the catheter and its placement in the abdomen. You ask yourself why? Is it that bad? (Spoiler alert, it’s not!)

What PD Catheter placement looks like

For me, it wasn’t and for most, if not all, of the PD patients I’ve spoken to since, it was the same.

It’s really wasn’t visible under clothes. I went to parties, weddings, wore dresses, wore summer vests and it was never an issue. I kept it curled under a 10×10 dressing and forgot about it most days. It was just there. Between it and my insulin pump and all the tubes and beeping of it I was like an Android lol.

PD Catheter easily hidden under clothing

I actually did a photoshoot in 2015 as a way to document the changes that life, illness and motherhood have left while proving that beauty isn’t always ‘perfection’ or the images we see in magazines.

I wanted to do the photos to have pictures of me before I got my operation; to celebrate my body before I get my transplant. To capture how much my body has gone through to get me where I am today. Most of the photos showed my catheter, uncovered, in all its glory!

After I started dialysis, I came to view the catheter as my life line. Which, in effect, is what it was.

That’s the thing about dialysis. At the start I didn’t really see it as a positive thing. To me, It was just the next inevitable step along this journey.

But when I eventually started, I did have a bit more energy, I didn’t feel as horrible and my life did become a little easier. (I’m not saying I was wrong to be anxious about the dialysis itself, but I may have been slightly mistaken about hot bad it actually would be ?‍♀️)

Short term I wasn’t retaining as much fluid, it was removing toxins etc. Long term I was able to get out and walk a bit. I didn’t feel as ill or as tired all the time and my hands were never as clean!

Don’t get me wrong, I still slept loads, and had to work my 8 hours dialysing time around when I had to get up the next morning, but all in all it was worth it.

My renal team in Omagh Primary Care Complex really listened to me. If I felt something wasn’t right or I had issues with my dialysis program they were willing to discuss possible solutions and changes if appropriate.

Really that’s a nice way of saying when I phoned complaining the stupid thing wouldn’t stop beeping all night they would help me sort it out. Plus they weren’t too bad at making tea and toast and could actually get blood out of me which is no mean feat.

Being on dialysis doesn’t just affect me. My then 4 year old daughter had to deal with all this too. Me being too tired to play, not being able to lift her. Setting up the machine every night. No swimming pool. Even down to things like not being able to go get her something from downstairs if I was already on dialysis.

But she took everything in her stride. She called the machine “Bob” and said it was my charger, because I plugged myself in at night and had energy in the morning!

I was on the transplant list for a total of 23 months; basically on standby 24-7 to fly to Edinburgh for the operation

I received a phone call on the 8th March 2016 and was told to get to the airport as soon as possible as they had got organs that were a match. This was actually one year to the day since I had started dialysis. That was some anniversary present lol.

When I got the call it was the second time I’d been called over.

The first time the transplant didn’t go ahead because the organs weren’t viable. They would even be unable to carry out the operation if I’d have had any type of minor infection. It is never guaranteed.

My theory was that I wasn’t even going to worry about it until I woke up. Then I’d ask if it went ahead and then was it successful. That sounds so blasé but it’s the truth. I think I’d have went demented if I’d been worrying every day about maybe being called.

When I finally got to Edinburgh (via a private jet from Belfast) It was 12 hours of waiting while I was tested and the organs were checked. It was quite an emotional time.

Edinburgh bound

Not just for me, but for my family as well, and poor John was in New York!! My dad came with me and everyone else was at home. I’m not sure who it was worse for. Apparently my mum cleaned the house from top to bottom, twice; at 11pm. (I should have sent her to mine but I didn’t even think… rookie mistake!!)

Obviously I was worried about the actual procedure. I like to know exactly what happens. I’m just that type of patient. I’d read all about it and discussed it at length with the surgeon and transplant coordinator so I knew it was a serious op.

Before I went down to theatre the consultant came to see me and told me that yes, the operation was a big one, but if anything went wrong they’d probably have met it before, and if not, they knew what they were doing. I think that really put my mind at ease, I also had enough time to get a phone call from John all the way in New York so at least I knew he was thinking about me and he knew what was happening on the other side of the world.

The operation was only 7.5 hours long and went well. I was in intensive care for a night, then in the high dependancy unit for 3 days, and back on the ward after that.

Post-op recovery

People ask about the pain. I actually don’t remember how bad it was. The pain relief was that good! But for the length of scar I had, about 10 inches from my mid abdomen right down through my belly button, it really wasn’t that bad. More a of a pulling sensation if I’m honest.

Scars are like tattoos but with better stories

Yes, it’s true what they say, you do have to drink a lot of fluid post transplant. I managed nearly 9 litres one day. Apparently the record is 9. I was actually raging I didn’t beat it!

I was up walking around, very slowly, after 5 days and home after 9. Yes. Everyone’s different, and I was quite lucky. And believe me. I wasn’t leaving there til they were 100% happy with lab results, input, output and medication was all sorted!

The difference I felt in myself pre and post transplant was like night and day.

I remember going to bed one night in hospital, really tired; and waking up the next morning not tired and I think I actually cried.

Ready for home

Yes, I’ve had a few minor issues since the op, but nothing that couldn’t be dealt with. Being able to say I’m not on dialysis anymore and I’m not diabetic anymore is brilliant. After nearly 2.5 years it’s still so weird.

Now, apart from the physical side of all this, there’s the emotional side too. This bit I tend not to joke about.

Essentially I had to wait for someone to pass away so I could live my life.

But that’s the reality, it’s one family’s loss that starts the beginning of the transplant journey; someone’s mother, father, son, daughter, sibling or friend. They all share something very special. Each of these individuals selflessly makes a new life possible for so many people. I’m so grateful to my donor for giving me mine.

The thing about organ donation is that even though someone wants to be a donor their family can override their decision, or they might not even know. 4 out of 10 families in the UK decided to not donate their loved one organs in 2015. 6 years ago that statistic wouldn’t have bothered me….

Being on this side of the organ donation process was a rollercoaster ride of emotions. I can only imagine what the donors family went through. I’m so thankful that my donor had the courage, selflessness and the foresight to sign up to the donor register and that their family supported their wishes. This courageous decision made by my donor has improved the quality life for people that they would never had met or known in their life time, including me. As of now I no longer have to inject myself with insulin or connect myself to the dialysis machine for 8 hours every night. Yes, there’s the 20 odd tablets a day and the increased risk of infection and possible rejection among other things, but it’s a small price to pay for getting my life back.

A selection of the tablets I have to take

My family and all signed up to the donor scheme many years ago. Alot of would be donors don’t get around to signing up. Sometimes it takes the need for a transplant by a family member or close friend to take action. I would encourage anyone who is considering becoming a donor to take the next step, sign up and share the decision with your family.

This year, Organ Donation Week in the U.K is 3th-9th September. I will spend a lot of time promoting it through my social media, as I do every year. About 2 years ago I was looking online and I came across this poem by an S. Todd and as far as I can see it’s untitled.

Now I’m not normally one for poems and stuff. Seriously, I’m not, but this one really hit home.

So here is is:

When I’m gone and no longer around
When you’ve buried my body deep in the ground
I hope you’ve listened to what I have said
My organs are really no use when I’m dead.
Take them all out
Share them around
Shout from the rooftops
A donor we’ve found!
My liver, my kidneys, my lungs and my heart
A few things to give someone else a good start.

With that, ladies and gentlemen I’d like to thank you for reading and I hope it wasn’t too boring.

If my story has in any way inspired you to become a donor, check the useful links below and get signed up asap. Who knows, you might just save someones life.

Please, if you have any questions regarding any of what I’ve talked about or been through don’t hesitate to get in touch or leave a message below and I will get back to you as soon as possible.

Useful links:

NHS Organ Donation Register
Organ Donation Northern Ireland
Public Health Agency
Flesh and Blood
Northern Ireland Transplant Association
Transplant Sport NI
RVH Liver Support Group
Northern Ireland Blood Transfusion
Northern Ireland Kidney Patients’ Association