New Kidney, New Life

A detailed diary of my kidney transplant, and my recovery in and out of hospital.

[newkidney-newlife]

March 2023:

Things are good. The wounds are fully healed, and except for covid again, I'm completely pain free!

I'm planning on getting a tattoo or two to cover all the scars though, they're pretty bad thanks to the slow healing issues.

[newkidney-newlife]

A late 2 year anniversary update...

Well the good news is...I'm getting married! The other good news is that those non-healing wounds have almost healed...almost.

The not so good news...my creatinine is jumping around all over the place, hence so is my kidney function, and nobody knows why. So I'm typing this from a hospital bed, luckily only a short visit for a biopsy though, just an 8-hour in-and-out procedure. Which was still pretty scary considering what happened the last time anyone went near my kidney with a needle. Not a painful experience though, just a very odd sensation as the needle goes all the way through to your kidney.

Some decent food will surely help though...which is sadly unavailable in this particular hospital. "Radiology Cheese Sandwich" doesn't sound like the best sandwich. It tastes like hard butter in dry bread.

[newkidney-newlife]

I'm still weird.

So I've been back to Addenbrookes with my irritating non-healing wounds, and according to the surgeon he's never seen anything like it. Typical me! So back again in two weeks for another check up and more confusing looks.

I'm pretty sure if you read this blog you must be ready for anything, because I seem to have every weird thing and complication going 😆

[newkidney-newlife]

21 months later...

Another update, just when I thought things were beginning to get a bit better for me healthwise, they still aren't.

So remember those non-healing wounds I was having trouble with? They're still very much there, and after 3 months of fortnightly visits to a local plastics and burns unit to get new plasters and ointments, they're still exactly the same if not worse.

Dressings, even with ointments, seem to make the whole thing worse. They tell me to leave it on 2-3 days, in which time the pressure from the dressing causes it to reopen then heal...onto the dressing, meaning when I take it off it undoes everything the dressing had done by tearing the scab off and letting me bleed everywhere again. So needless to stay I've stopped using the dressings.

To make things even worse, they seem to have narrowed down my two current options to fix it:

- Surgery, which has a high risk of making things worse.

- Or a skin graft, which will also have a high risk of making it worse.

So yeah, that's about it. Almost 2 years later, and I'm still bleeding everywhere, and very sore.

I hope everyone whose treatment or transplant has been affected by the pandemic is staying safe and well.

Harley.

[newkidney-newlife]

18 Months Later...

So today I realised that 5 days ago was the 18 month anniversary of my transplant. And obviously at the moment things still suck. We're still in the middle of a global pandemic, the government aren't taking any responsibility, it's all just bad.

But regarding the kidney, the wound still hasn't healed! I've been having to go to my local burns unit fortnightly for about two months, and basically there solution has been putting glorified plasters on it.

The wound for the bleed still hasn't healed either, and on top of that, there seems to be some muscle issues around the wound that may of may not be connected. And on top of THAT, I'm still having quite a bit of trouble with PTSD after that surgery. It took a few montahs to manifest as it does in some cases, but I'm still having flash backs and panic attacks, taking me back to the most memorable parts of that terrifying week.

Stay safe everyone, and I hope everything gets better soon!

[newkidney-newlife]

Turns out I'm not done yet.

It's been just over 3 months since my last entry on here, and things are still far from normal. The wounds from the transplant, the bleed and the chickenpox still haven't healed, COVID cases are escalating quickly, the whole of England is on lockdown again from next week, and my mental health is really suffering because of it all.

The wound from the transplant isn't healing in the right direction, instead of the skin healing across, it's attempting to heal upwards, and as it has nowhere to go, it's failing miserably. The same goes for a small section of the bleed incision, and as for the neck...well that has no excuse. Because it's failing to heal, I've been referred to the plastics department, where a skin graft is a possibility.

As for the lockdown, what is there to say? Thank God for that. This should have been done a long time ago.

And my mental health is probably the worst it's ever been. I'm showing all the symptoms for PTSD following the bleed. Strange how it's so delayed though.

A lot of different things have been causing flashbacks and panic attacks; including warm room temperatures, the sound of fans and beeping, and random memories that occasionally and suddenly resurface.

[newkidney-newlife]

My Final Post: 365 Days Later...

Hi everyone,

I haven't posted lately, mainly because I forgot with everything going on with COVID-19 and family things, but in all honesty, not much has really happened, but here's a catch-up anyway:

6 weeks ago: The Ladybird Guide to Infections: I woke up one morning and was peeing blood rather painfully. Whenever you notice something a bit off, call the hospital. I called the hospital who gave me a week long course of antibiotics, and in about 6 days I was back to normal, so there's nothing to worry about if this does happen :) Remember to always finish the course though!

Nearly 3 Weeks ago: Unfortunately, exactly the same as before, mum's mental health was deteriorating again. This included hearing voices, vivid delusions of loved ones dying in explosions, hangings, and all other sorts of horrible ways, and a lot of confusion. Sadly this led to her being sectioned for a 3rd time, but thankfully she came home yesterday, and all of this has stopped, hopefully this time the effects will be a bit more permanent!

And now: From the last 3 surgeries (the transplant, the keyhole surgery, and the huge bleed after the keyhole surgery), all that's left are some small surface cuts, which are most likely only there because they line up perfectly with the waistband of my trousers.

The chickenpox has also mostly healed apart from two small patches on my neck where it was at its worst. All the other larger patches do seem to have left some considerable scars, though unfortunately I don't know whether they'll be permanent or not (here's hoping for the latter!).

So to everyone out there who is going through the transplant and the recovery, best of luck guys! You'll be fine! :)

[newkidney-newlife]

CODE RED: LOCKDOWN

Well, it's happened, starting yesterday, the UK is officially on lockdown.

The public obviously can't be trusted in a pandemic, ignoring the government recommendations and laws, still going out in huge groups, spreading it around, and putting people at risk.

The panic buying of toilet rolls and handwash is dying down, but probably because the government has (quite rightly) grounded the entire country.

I've already been stuck at home for quite a while anyway, so I'm already incredibly bored, and won't see my girlfriend for at least 3 weeks.

At least Steam has a sale on...

[newkidney-newlife]

Another short stay in hospital, then home again to start the isolation...

Just got home from hospital again, turns out what first appeared as shingles was full-blown chickenpox, and put me in hospital for a few nights.

I'm now home and now on an extra 28 tablets a days for a short while...if I wasn't rattling before I'm sure I will be now!

So there's another thing a low immune system can surprise you with!

Of course, now I'm home, so begins the isolation of the covid-19 nightmare, as catching it could be fatal with somebody with a low immune system.

Well this'll be fun...at least I've got a giant lego set arriving soon! :P

[newkidney-newlife]

Well they say things come in multiples of 3...right?

Just over one month after the major surgery, and it's basically already healed, still a little bit bloody from the staple holes, but all in all good.

This morning I went to get the dressing changed on the drain wound (which is still a bit green and gunky, but on the mend), and I thought I'd mention the serious rash that had developed on my neck that was starting to get really painful.

As it turns out, that has now spread to my chest, back, and under most of my hair on the left side: it's shingles. Yay.

The best part is that because of my cocktail of medications, the usual treatments would interact and possibly cause more serious issues. Long story short: take some painkillers, wait to get better, and basically don't go anywhere because you're contagious.

Ah well, if I don't go anywhere nothing else can happen and I can't catch anything.

An introvert's dream! Shame I'm already bored of being around the house...

[newkidney-newlife]

Staple-free...but still bored.

Well, I'm now staple and dressing-free on the main incision as amazingly it's already basically healed! It really is amazing what they can do nowadays, although I the surgeons had been a bit more careful it wouldn't be there in the first place...

Having the staples removed was ok and relatively painless, probably on the same level as a blood test, except it leaves you with plenty more holes. There was an additional staple about an inch from all the others, loose and twisted, which had confused us, but on asking it turned out the doctors and transplant nurses didn't know why it was there either, our best guess so far is that they were testing the stapler.

The main issue now is the much smaller wound left by the drain tube, which is not looking too good and has probably got an infection despite it being kept clean and having iodine dressings. The wound, which the first time round (post-transplant) left a small hole and a tiny, almost unnoticeable scar, has left an inch long gash in my abdomen which is incredibly sore, reluctant to heal, and now a rather unnatural shade of green.

But apart from that I'm not feeling too bad and recovery seems to be fairly quick. I managed to take public transport all the way to the other side of London the other night to see a metal concert, which did wear me out for a few days (up to and including now), but the point is I made it with very few issues apart from some soreness.

A funny thing did happen that night though, due to the staples, I did set off the metal detectors at the venue, and after a pat down, in which they found nothing of course, it took me and my friend a full 24 hours to remember that my body was home to more staples than Rymans.

[newkidney-newlife]

Still going, still bored.

After being at home for a while after the surgery, I'm basically back to where I was after the transplant.

I'm bored, feeling up to doing nothing and not being able to drive for at least 6 weeks.

I'm sore and aching all over.

But the worst thing by far, is feeling worthless, nothing but a burden on those you love.

As my parents and I are hoping to move house soon, there's things to do, and I'm feeling absolutely awful about not being able to do much to help.

No heavy lifting, and no bending or stretching is so limiting. This means top and bottom shelves are basically out, if I drop something it hurts to pick it up again, too much exercise hurts, not enough and I start to ache.

I can't wait to heal up...again.

[newkidney-newlife]

Well that was an adventure...

Eventually they did manage to drain the lymphocele, but with a pretty big complication. A abdominal bleed that took two days for anyone to notice.

It's worth mentioning that I have virtually no memory of the next four days.

For a couple of days after the drainage I apparently ended up shouting, literally screaming in pain, and had my first experience of night terrors, which included The Tale of Mr. Jingles who was poisoned with apples, and another nightmare involving my Great Grandparents, and of this dream I have no memory.

After this, my memory ends, I literally remember seeing a 2 inch scar, and waking up from the terrors.

Another two days later, I woke up with no memory, and a large incision running vertically from my groin to my chest. Turns out during the initial surgery, surgeons had nicked a blood vessel, causing a gradual abdominal bleed over two days that led to 7 blood transfusions.

Over a week later I was allowed home, stapled together, and to be honest, I'm still absolutely terrified.

I'm unable to lay on my side, I can barely stand up straight, and whilst unconscious my parents decided to move house. Also during the time in hospital my phone and wallet went missing, so if the surprise surgery wasn't enough, I'm under a lot of stress from all that.

[newkidney-newlife]

Two Days Later: Still waiting...

So here I am, two days later, still in the bed. They've decided that the lymphocele still can't be reached through the normal draining method, so it's the surgical route for me!

There's a 50/50 chance whether it'll be today, but it could be tomorrow depending on theatre availability.

At least the painkillers did the trick for a while!

[newkidney-newlife]

6 months and still problems!

Over the past couple of weeks, a lot has happened. My mother, my donor, has again been sectioned, the stress is almost unbearable, and I'm writing from an Addenbrookes hospital bed in a lot of pain (probably about a 9/10).

A couple of weeks ago the pain in the new kidney area gradually started getting worse again, and for nearly a week now I've barely been able to walk. I can walk, but I just only just put one foot in front of the other, and it takes an age to get absolutely anywhere.

So after having a CT scan today, they want to check the size of the lymphocele to see if it's grown or shrunk, and if it has grown, hopefully drain it this time.

[newkidney-newlife]

Just over 4 months, and still more surprises!

So, it's nearly Christmas, and I have a fresh pain just in time! Yay!

It hasn't been confirmed, but the most likely cause is the lymphocele, a collection of lymphatic fluid around my new kidney.

Usually these are easily drained, but unfortunately mine's too risky to get to, so now it's just the maximum dose of paracetamol daily until the fluid is reabsorbed and the lymphocele disappears.

[newkidney-newlife]

Just an update :)

So, since the time I was trapped in hospital for four days (they never did anything about it as it wasn't affecting the kidney), not much has really happened. I'm down to an appointment every two weeks now, and my wound is still healing because for some reason it didn't heal over properly, so I've got an iodine dressing on it to help it along.

Things are getting quieter! :D