Update, nearly a year on…

I can’t believe it’s been nearly a year since Ernesto moved in….

Ernesto, if you haven’t read my earlier blogs, is a beautiful, strong, well behaved kidney. He used to be mine, but now he belongs to my son, Jordan.

He saves Jordan 12hours a week in dialysis time (not including travel). So far, he has saved him around 564 hours of lying in a bed attached to tubes which remove his blood and clean it before returning it, and the associated pain, nausea, cramps, exhaustion, risk of infection and all the other generally shitty things that come with dialysis. I thank all of the gods everyday (yep, all of them, and I’m not religious) for the opportunity we were given to change the story, to make things better.

Have things been perfect? No. Have things been about a million times better? Without question. I am proud of us. We have come a long way.

Two weeks before Ernesto moved in, I lost somebody who meant the world to me. I was so utterly numb and devastated that I felt like I dream-walked through to the surgery and beyond. I felt angry for a while that I had been so proud of what I was doing, and I felt like that had been robbed from me, like I couldn’t feel anything about it, at all. Just a blank, weird, white-noise feeling in my soul. It hasn’t gone away, but it’s quieter now, I can hear the world coming through a bit, the colours have come back a bit. Healing takes time- true of physical and emotional scars alike.

So, I guess that physically I’m back to myself now. Technically there’s less of me, about 4 oz less, but not so you’d notice! And I’ve grown in wisdom! (she lied!)

I retch slightly when I see someone eat a steak and kidney pie. But to be fair, I think I’ve always done that 🙂

 

 

 

 

 

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Update 16th August 2017

 

Well hello, beautiful people!

I thought I would start with another amazingly catchy title! 🙂

So yeah, the last time I rambled ad nauseum, I told you about getting prepared to be a live donor for my son, Jordan. I think I mostly wrote about that to get my feelings about the process out in the open and explore them. But now I want to do something different- I want to spread some awareness about renal disease, renal failure, transplants etc. For the most part I can only really talk about our experience, but I will try to get some good scientific info type stuff in here, in an easy to read and sometimes funny format 🙂 let’s give it a shot. I really welcome comments and personal experiences.

For today though, I’m just gonna tell you about the last few days….

Jordan and I went into hospital on Thursday 10th August, for surgery on Friday. It was further confirmed that mine was going to be relatively tricky surgery. Here’s what most kidneys look like…..

renal_vein

Note the nice, tidy “one vein, one artery” set up? Yeah. Well. After multiple scans, the medical team realised that Ernesto has 2 arteries and 3 veins, and Ricardo has 3 arteries and 2 veins. But the surgeon had 20 years’ experience and said I had supercharged kidneys so was I happy to go ahead? Does a bear sh*t in the woods?

Friday morning, I woke up nil by mouth and beyond scared. Brave facing it all over the place but I can’t lie, I was pretty nervous, for me and for Jordan. The anaesthetist was great, she told me she would have to take a few extra precautions as I have always had quite low blood pressure, so I would need a blood-oxygen monitor. I know from experience these aren’t a party to have put in, but she said she would do it when I was asleep. Cool. I won’t lie, I am a wuss. Pain makes me sweary.

The next couple of days are a bit of a blur. I don’t remember much of Friday, except waking up late evening and being told Jordan was fine and in recovery. That’s all I needed to know. I’ve always suffered from FOMO (Fear of Missing Out), so obviously I had to know how it ended 🙂 lol

Saturday, I remember waking up to the terrified face of my youngest son. I was still pretty sore and must have looked quite ouchy.

Sunday, I was full of gas. Even more than usual. Like, it was pretty sore and bringing me down. And I was acutely aware that I wasn’t managing to follow the recommendations of the medical staff to move around as soon as possible to aid healing, so I admit I was giving myself a pretty hard time. Jordan was in a fair bit of pain too and I am going to tell you this in the interests of total honesty, because if you may think of doing this for someone one day, you need to know EVERYTHING. Please don’t hate me. I regretted it. I thought, why have I done this, put my son through yet more pain, for what? Is it going to make that much difference to his life, given the pain that he’s endured and the other medical complications of renal failure? Will it have been worth it? I would definitely say that Sunday was the darkest day.

Monday was Change Day. I can’t really explain it. I felt euphoric and determined when I woke up. The people I had met on the renal ward and become friends with had totally inspired me. A woman who had recently received a transplant, I won’t use her name. It was her second transplant and she had been waiting for it for 12 years. She came back to her bed grinning like a Cheshire cat and told me she had been for her first wee in 12 years! She was honest to god the most courageous, upbeat, optimistic person I have ever met. She made me cry, listening to her matter of factly tell me what she had endured but how grateful she was for her life and for everything ❤ her arms were full of bruises, she was having kidney biopsies regularly (they aren’t pleasant) but she took everything in her stride. Absolute warrior woman.

So I dragged my sorry ass out of bed and got a shower, dressed myself, started to feel lots more human and received THE BEST NEWS. Ernesto had settled into his new home perfectly! No more pressure headaches and general horrible ill feeling for Jordan! His blood toxins were well within normal ranges, I mean like normal for a person with 2 working kidneys!! He was a couple of days behind me recovery wise, and still feeling pretty damn low. Well, it is major surgery! So we talked loads and gave him loads of encouragement, cos now I finally understand what its like to be in pain, in real pain so you can’t concentrate or communicate your needs. I hadn’t really understood that before, I had tried but its hard if you haven’t felt it.

Tuesday (yesterday) I was sent home. I didn’t really want to go cos I hated leaving Jordan feeling low and I wanted to help him but I knew I needed to recover too. Properly torn. So we spoke loads on the phone and almost hour by hour he started to improve, as I told him he would! But it’s hard to see it when you’re in it. Tuesday was pretty much hell for me for a few personal reasons that I don’t want to discuss here, because they’re not related to this. All I will say is this:- *L.M.P a.k.a Mine*- “Love, love is a verb. Love is a doing word. Fearless on my breath”. You taught me how absolutely true those words are, and how brave I can be ❤

Aaaaaaaaand let’s take it all the way up to today. How do I feel? Pretty damn good actually! Barely sore at all, I’m only taking paracetamol in fact, and as previously  I’m a total wuss. I’m resting (sorta) but absolutely bubbling with excitement for the future we now have as a family. I had the best call with Jordan, he sounded better than I have heard him sound in at least 4 years. The strength is back in his voice, he is himself again, calm, patient, a very sweet soul. He’s feeling differently about the future. He feels like he has one now 🙂 He said he appreciated what I’d done, I got all emotional cos to be honest I have felt like I’ve dragged him into this at times. Dialysis works well for some people, but for others their quality of life is really depleted, so this had to happen and I didn’t think we could afford to wait too long as it would have meant further invasive procedures for Jordan, such as having a fistula created (in straightforward terms, they join an artery to a vein to create a port for dialysis. It’s not fun).

We are just a normal family. We eat takeaways and probably don’t get enough exercise, we don’t have a perfect lifestyle. You don’t need to be the strongest healthiest person in the world to be a living donor. I’m not saying it won’t be a bit painful at times, but we are talking a matter of a few days, its completely achievable. I’m not in pain today, 5 days post op. I can move around, do things, get a shower, make a cuppa. No skydiving for a while maybe (LOL) but sooooooo worth it 🙂 You got this!

Thanks for reading!

 

 

 

Friday 30th June 2017

Not the most exciting title, I know! But I did get a very exciting phone call yesterday.

Let me bring you up to speed.

My name is Clare, I am a mum to 3 grown sons, Adam (big’un), Jordan (middle’un) and Dylan (little’un). My son Jordan has chronic end stage renal failure resulting from IGA Nephropathy, and lots of other health complications. Bottom line, dude needs a new kidney. Mine.

As soon as I discovered that Jordan’s condition was suitable for donation, I knew I wanted to do it. It just seemed right. Watching your child’s health deteriorate in front of your eyes is a harrowing thing, something I can’t even describe, and this is something that could potentially make such a huge difference to his life, so for me its a no-brainer.

I knew there would be lots of tests involved, and I had concerns because my son has a rare blood type that I don’t share. I had my first round of blood tests and waited anxiously. Then the news came back. My blood type is O+, what they call “universal”. I was suitable to donate! *cue “Happy Dance” around the house!*

My tissue test results came back a few weeks after, still suitable! The Happy Dancing was having detrimental effects on my living room carpet by this point.

The next few weeks involved lots more testing- blood pressure, blood tests for virology, weight, urine analysis, chest x ray to make sure my lungs are healthy, an ECG to make sure my heart goes bumpiddy-bump just right, a split function renal test. Right, let’s talk about that, cos that’s weird, and the medical staff may not tell you this. It’s not unpleasant exactly, just…weird. They inject a radioactive dye into you by means of a catheter. Your blood is tested hourly to check your renal function- basically, how quickly your kidneys metabolise the dye. And your kidneys are scanned to check their overall and individual function. I was hoping to get super powers from the radioactive dye. Unfortunately, I did not gain Spidey Senses. I did, however, feel Pretty Damn Weird. Very warm and tingly all over. And I was quite wobbly on my feet for the next 8 hours or so, with odd vertigo feelings. I have to say, it wasn’t a party! Still worth it though!

I had a review with the Psychology team. They said I was a good candidate for donation, as although I suffer from anxiety, I was very self aware and well adjusted. I was as surprised at that news as you probably are, trust me! I should probably mention at this point that I have named my kidneys. Ernesto will be the donated kidney, he’s on the right. He is perfect and beautiful, the epitome of what a great kidney should be. Ricardo is his Hillbilly Cousin looking kidney on the left. He’s staying. Yes, and I still passed the psych evaluation! I know lol, shocking isn’t it?!

On 22nd May, I attended an appointment with the Consultant Nephrologist. He said, “What would you say if I said you were suitable to donate?”. I said, “Grab your scalpel, mate, and let’s get started!”. He smiled awkwardly. I get that a lot!

Which more or less brings us up to yesterday’s exciting phone call. We have a provisional date for the operation! Only 6 weeks away! Sh*t just got real! I got randomly talking to a very lovely lady on facebook yesterday who has been a donor, and she has been absolutely fantastic, answering all my stupid questions and everything.

If you’re considering being a donor yourself, either an altruistic donor (where you don’t know who your organ will be donated to) or whether you’re donating to a loved one, one piece of advice I would give at this stage- TALK! Talk about all of it, everything, all of your feelings and thoughts. Ask questions. Be informed. Nobody minds. What you’re doing is amazing, and people are happy to listen. Also remember, this is YOUR experience. Yeah sure, the recipient is important too. But this is yours, do it exactly how you want to do it. You will get a million different emotions everyday. Just allow yourself to feel them. I’ve been euphoric for about 3 months now, but I realise that won’t last, this is reality we are talking about, there’s gonna be hard bits, painful bits, emotional bits.

One thing I have struggled with is thinking about the future. When you’re dealing with something so huge, you have to take everything day to day, but it’s also good to have something to focus on, something to look forward to. So I booked a holiday I can’t afford! Probably not the best solution but to hell with it! When I’m sipping mojitos on that beach, I’m sure I won’t regret it 🙂

To all who read this, thankyou. Have an epic Friday, snuggle the people you love n don’t take a thing for granted.

Big love,

Clare, Ernesto and Ricardo.