Betty in 2022

So I last wrote in October 2021 and I’m happy to report that everything is still pretty stable in regards to my kidney function. It’s definitely been a weird few years and now five COVID vaccinations in, my life has pretty much returned to normal. I know many patients who are still fearful, and I understand that, but my physical and mental well-being meant I had to start living my life again. Despite the risks.

I eat out a lot 🤣

Writing my food blog has opened up new opportunities to me and I’ve leapt at most with great enthusiasm. (I say leapt, perhaps more like trundled slowly 🤣) but it has meant eating out alot which to be honest, is my favourite past time. No I don’t wear my mask anymore but I still actively avoid people where I can. I went to a nightclub opening and brought home a cold. So I still have to be careful.

My baking also brings me great joy, as well at great weight gain haha. I bake something new every week and often feed it to my neighbours. Another hobby based around food I know but what can ya do hey.

I’ve also got a new nephew who is (incredibly) nearly a year old. So I was never going to miss him growing up. Though watching him is utterly exhausting despite being really enjoyable. I’ve never really been so close to a little human 🥰

Chocolate Bronuts

Health wise, the renal dietician has again discharged me. My dialysis graft is being left to fail naturally and I’ve had scans to see if there’s room for another transplant in there. I’ve had quite a few gout flares, usually to do with my home cooking (who knew asparagus was on the bad list, not me!), and have been hobbling around with a walking stick more frequently. So, I plod on. As does Betty.

The only other thing that’s happened recently is that I lost a great friend. We dialysed for many years together and he often helped me at charity events. I went to his funeral last week, and met many of my old dialysis nurses there. It was a very sad day, and a poignant reminder of how hard kidney disease is on the human body. He was 44. I hope the same nurses aren’t at my funeral anytime soon. This one’s for you Matt 💜💜💜

Betty goes Bananas 🍌🍌

During this past summer I had various blood tests. Most showed a steady decline in Betty’s function. As expected. However, all my levels were stable other than my creatinine. Which doesn’t make much sense in a failing kidney. I couldn’t understand why my Potassium was normal, why my Phosphates and electrolytes were all on point. So again we moved to look at my immunosuppressant levels.

I have been on Tacrolimus since day one. It’s a funny old drug. Good to stop my immune system attacking the kidney, but in too higher dose can actually become nephro toxic and kill it. And yes, my levels seem to have been increasing, and not for the first time.

So at 14% function and a very elevated Tacrolimus level two tests in a row, I spoke to my nephrologist and we agreed to switch me to a new immunosuppressant. It’s still Tacrolimus but a slow release version called Advograf. Rather than morning and night I now take the same dose, but only in the morning.

Annnnnnnnd……..I had bloods this morning and I’m back to 18% with a creatinine level at its lowest for about a year 🎉🎉🎉🎉🎉🎉🎉

I’m chuffed to bits as you can imagine. Anything to keep Betty going a bit longer……

Betty Vs Bumps

Yesterday was definitely a day of two halves. Firstly, I visited my transplant doctor for the first time in nearly seven years after my function dropped to 15%. I wasn’t expecting to be told much but was happy to find very few people in the waiting room when we got there. I’ll say straight off that The Royal Liverpool Hospital haunts me. They may have saved my life a few times but they are the ones who put me in this situation in the first place. Boo hiss!!

The RLUH

Anyway, he told me there might not be anywhere to put another kidney in and I wanted to scream at him. Good job I’m more polite than that hey.
He said they can take Betty out then I’d be on dialysis for a while and they could maybe put one back in the same place. Which is better than nothing I guess. I’ve done dialysis before I can do it again. He definitely thinks my antibody levels are going to come back sky high as I’ve had so many transfusions (also because I was ignored when complaining about side effects). By this time my head was going to blow but he went on about me being over immuno-suppressed and after having a feel decided my right side where they’d potentially put a kidney is calcified. Then after all the negativity said to let nobody use contrast on me and to come back in a year. A year!!!! Hopefully that means he thinks Betty will last at least that long.

It was all a bit deflating. I’m 36 not 66, I don’t want to be told I’ll be on dialysis for the rest of my life. Find a way man!

So, after all that miserableness we travelled home, picked up the puppies and drove into Chester town centre. Here we walked, ate, sat in the sunshine and enjoyed being together. I hunted down some fabulous food and just generally tried to put the morning behind me.

Me enjoying a Homer doughnut from Planet Doughnut

Now, the next day the shock has worn off a bit and I am ok with it all. I don’t have much choice really do I. As always, we will get on with it and deal with everything like we always do. With a laugh and a smile. And a doughnut or three 😋

Betty Vs Interventional Theatre

Betty is failing. I know that. I’ve known that for quite a while. The last iron infusion has perked her up a little however and she dragged herself kicking and screaming back to 18% function about a month ago.

But by then I’d already been flagged up by Arrowe Park as needing my dialysis access checked, so off I go for a scan on my ten year old graft. I was grumpy enough about being made to enter an actual hospital but then the vascular team who scanned me reckoned that ‘they’ would probably want to operate on it. Cue eyerolls that could flip the universe and tantrums that make toddlers look tame.

So two weeks later my very unhappy self is sitting in the ladies waiting room in the SEAL unit at Arrowe. Obviously as it’s me, I’m left sitting nil by mouth for hour after hour which is no good for a failing kidney. The afternoon patients were coming in and I was still sat there. Eventually I had a polite moan at the lady looking after us and weirdly enough, or not, they were suddenly ready for me.

Now I’d warned them in advance that my access for cannulas and such is awful. It took two lovely anaesthetists and a nurse six attempts to get a cannula in. I’m amazed I stayed calm enough to let them to be honest but they were very good. I think it was the threat of me getting a foot out so they could try a vein in there that got the needle in in the end 🤣

They finally got a cannula in

So now I’m on the table talking to a radiographer that knew my mum when she worked there. Again, all very pleasant and friendly. Theatres aren’t nice but at least I had my own underwear on for this one haha.

The op itself was on my right arm so imagine my arms splayed like I’m doing the YMCA. I’m all ready to go and then they realised I hadn’t signed the consent form. Ah well. Anyway, the nurse popped a syringe full of contrast dye and then one of what she hilariously called ‘wine’ into my cannula and we were off. Now I’m normally one of those patients who wants to be knocked out for everything, it’s just easier, so this was a little weird. I vaguely remember chatting loads of rubbish to this poor woman and I swear I dozed off at one point. Anywho, it took about an hour. As I understand it small balloons are fed into the graft and expanded to widen any stenosis. Yeah it hurts but the anaesthesia helps a lot.

All bandaged up

Afterwards, I was taken to the recovery room and fed hospital toast. I don’t know whether it’s because you’ve not eaten in hours or what, but there’s something glorious about hospital toast.

What is is about hospital toast?

Home the same day. Perfect. Graft is buzzing better than ever. Stenosis all sorted. Then two days later I’m covered boobs to groin in a huge rash. First check,is it meningitis? Course it isn’t. Chat to mum, Google, seems I’ve reacted to the contrast dye. Happens when you’ve got rubbish creatinine levels. I popped a few Piriton to no effect. I left various messages with my renal specialist nurses, mainly so it’d be noted on my file that I’m allergic but when one finally rang me back they seemed dubious. There is literally nothing else that could have caused it. I even read papers about delayed reactions online. It would appear most reactions are ignored or put down to something else, so it happens again when they dye is used. I’m waaaaay too stubborn to let that happen to me. I’ll be kicking up a fuss next time they want to use contrast on me.

Anyway, about five days later, stitches are taken out and rash is slowly dissipating. Bruises are still huge, but that’s anaemia and aspirin for you.

It’s now been a few weeks and I’m rash free but still black and blue. More blood tests and scans booked. The life of a CKD patient hey. All fun and games til the Iodine makes you look like Spotty from Superted 🤣

Stitch removal day

Betty’s Last Stand

So after six years and five months I’ve finally begun the process of being reactivated on the transplant list. My last blood test showed Betty was functioning at 15% along with me having extremely severe anaemia.

I’d been suffering cramps, headaches, nausea and dizziness which have all lessened since having another good old iron infusion. The hope is that getting my iron levels up will help Betty. I will have another blood test in a few weeks to see if it has helped and if I need more iron. We obviously want to delay the inevitable for as long as we can.

The prospect of going back on the list is not as scary as the thought of going back on dialysis. 10% function is usually when that starts. Yes, I’ve done it all before, that’s pretty obvious from the scars and the fact I look like an old woman at 35, but it’s all gone so fast. Especially as we’ve all lost the last year. I’m definitely not ready to be back in that chair three times a week with needles hanging out of my arm, fainting from having too much fluid pulled off, or cramping so hard I scare the patients next to me. I loved my dialysis staff and I still do but I much prefer having them as friends rather than carers.

It took nine years of waiting last time. Almost a decade where my life was just paused. Endless hospital visits, tests and operations. Frustration, anger and even bitterness watching people get their transplants before me. Then one day, a stranger saved me. Gave me a chance at normality.

I’ve had six years dialysis free, we travelled the world, went places we once imagined would be impossible to visit. We flew in helicopters, climbed glaciers, walked in volcanoes, ate sushi on Mount Fuji, held baby kangaroos and sailed with humpback whales. It’s been an amazing, and at times emotional adventure.

Now that adventure is slowly coming to a halt, I’m hoping I’ll get one more Christmas before dialysis looms again. And who knows, I might be one of those lucky people whose name is pulled out of the hat really quickly. Betty mark 2. That’d be nice.

#GoBetty #organdonorsdsavelives

Betty and the Brain

I’m a stubborn old hector. I always have been. When they told me I had Post Traumatic Stress Disorder I laughed it off. Then it was changed to Post Traumatic Adjustment Disorder with depression. I shrugged and carried on. I saw a therapist who treated me using the Emotional Freedom Technique (sounds weird I know, it involved lots of tapping of different bits of my body) after the failed transplant and it stopped my nightmares. Still though, I never went back after the sessions ended. I never once brought up mental health with a doctor again, ever.

I am and have always been a worrier though. I thought that everyone was like that but apparently not. My main worry is obviously my health, the fear of my kidney failing and ending up back on dialysis. Which seems a pointless and selfish worry as it is an inevitability really. The pandemic has definitely exacerbated my anxiety about this though, with doctors appointments put on hold, blood tests being difficult, and the threat of actually catching and dying from Covid-19. Added to that has been money worries for my family, our finances and even my waistline.

Plus the whole shielding thing. Ugh, I think I just miss normal human interaction. I’m quite happy wearing a mask, I’m quite happy ordering my food online, but I miss wandering around a supermarket or grabbing a coffee. Ridiculous hey! It feels like my independence has vanished and I’m back in my wheelchair relying on others to do everything for me. Now it also looks like it’ll be happening again and a normal Christmas will be off the table. Very upsetting as I adore our family Christmas’s.

All of this has got to me, more and more as the months have gone on, and I finally got in touch with my GP and asked to be referred to the mental health team. This was a massive deal for me. It meant I was finally admitting I needed a little help.

I have spoken to two ladies since who have assessed me as having mild anxiety and mild depression and who have recommended CBT to begin with. I have researched this and am willing to give it a try. I’m not interested in looking at my past, but at techniques to help me with my bitter feelings towards the Doctors who’ve failed me and my envy of people with ‘normal’ lives. To teach me how to stop laying at night worrying about what happens when my dialysis graft finally fails, or when Betty stops making pee.

Now I’m on a waiting list and I am very used to that. That in itself makes me feel better though. Plus I had some very reassuring news this week from a blood test…..

Betty is still stable! Very very stable. So my worries are not coming to fruition just yet. Hopefully she will carry on until some semblance of normality can return. It feels like I’ve wasted so much time with this gift especially as it’s now been six years since I received it. Forever grateful though. Forever and ever 🥰

Betty Vs Isolation

Our isolation began in the second week of March. It’s now the last week in June. I have left the house only three times in nearly four months. Most of those times were for medical reasons. Tomorrow I will go out for the fourth time, to the hospital, for an iron infusion. Thankfully, through all this, Betty kidney has remained stable and is even a little perkier as I near my target weight loss goal.

I’ve celebrated my birthday via FaceTime, taken part in YouTube quizzes, carried on with Slimming World and ordered many many things online. We have completed jigsaws, watched entire tv series and I’m now an expert at animal crossing. I’ve won food competitions on Instagram, got to know our postie, discovered our neighbours are even more lovely than we thought and completely redone the garden. I’ve cooked and baked more than ever, been for local walks and eaten soooo many cookies.

So other than being frustrated, bored and at times a little anxious, all is well. Yes I’m grumpy my holiday got cancelled, and my husband is furloughed, and that I can’t go for coffee with my sister, but I’m alive. It could be so much worse, and for many it has been, and not just because of Covid-19.

Now my hope is that people are sensible as things begin to open up, wear masks when they should, and listen to those of us who won’t be returning to normal life just yet. I have heard a number of stories of people wearing masks being made fun of, and I don’t really know how to respond to that other than to shake my head and tut. You do what you need to to feel safe, don’t worry what everyone else is doing. Just wash your hands a bit more often.

Stay safe everyone, we have not seen the end of this just yet. But I think there’s a little light at the end of the tunnel.

Betty Does Barbados

Note: I know what’s going on with Covid-19 is big news, and yes as a transplant patient family we have begun social distancing but I am going to keep this post light and virus free, especially as I’m getting grumpy as my month in Turkey now probably won’t happen 😊 p.s. Wash you hands………..

For Steve’s 40th birthday this year we had decided to go all out. You’re only 40 once and as Betty is slowly on her way out we knew we needed to get our holidays in sooner rather than later. So on Valentine’s Day we set off to Gatwick Airport and flew with British Airways to Barbados in the Caribbean.

Now we have been lucky enough to travel all over the world and usually we tick a place off of our map and say ‘That was nice, let’s go somewhere different next time’. The only places we would go to again would be Turkey and New Zealand. However Barbados has since been added to that short list. We adored the people, the food ( check out christyeats.com and christyeatsfoodblog on Insta), the lifestyle, all of it. What a great country. We stayed in a lovely family run hotel on the West coast for the first week, enjoying eating out every night. We went fishing, toured the island and Steve even played golf. It was fabulous.

Our view from the Garrison on Barbados

Then for the second week we travelled to the port and boarded the Royal Clipper. We have never been on a cruise before but figured it was a good way to see lots of places in a short time and in absolute luxury.

The Royal Clipper. With the sails up it was beautiful.

Now from the start we knew we would be the youngest couple on the ship but that meant we made lots of ‘adoptive grandparents’ on board. We met some lovely lovely people and will hopefully stay in touch with a few of them. We felt very included and very young for a change 😂 even when they all sang happy birthday to Steve at dinner with the help of the restaurant band.

So whilst on this cruise we visited Dominica, St Lucia, Antigua, St Kitts, Il Des Saintes and Martinique. Each island was unique and I got magnets and pins for my collection where I could. We also did excursions on most of the islands but particularly enjoyed our ‘sea scooter adventure’ in Antigua. I’m a really weak swimmer so the opportunity to swim out at sea with a little machine to pull you along (think James Bond in Thunderball) was fabulous. We got to swim with rays and turtles and we actually got quite far out. Plus whilst singing the Bond theme in my head I felt very cool, until I saw the pictures of myself in the snorkelling mask. Then I just looked like a squished potato.

I also managed to climb the mast of the ship and I was properly proud of myself as it nearly killed me. I am so unfit!

Steve with a Green turtle

Anyway, other than the first night where we slept awfully it was lovely. Would we go on a cruise again? Doubtful but you never know. It would be a good way to see countries I’m not supposed visit as the food on the ship would negate the need for me to risk food poisoning on the land. The food on the clipper was beautiful but I’ll take showering in a stable shower over a swaying one any day. I have so many bruises from bumping into things it’s ridiculous.

Once home I had arranged a surprise birthday meal for Steve which he thoroughly enjoyed. Thanks to everyone who came and everyone who helped me arrange and keep it all secret. That might have been our last night out for a while!

I have since had a blood test which shows no improvement in Betty’s function despite me losing 10.5 pounds since January, but we are still hopeful. Now I am working from home I can concentrate on drinking more (I hardly ever drink at work) and resting more. I am doing lots of cooking now I have started Slimming World and am enjoying my food blogging to keep me occupied. I will be doing a separate Barbados food blog on the website I dropped above.

Thanks for reading everyone and stay safe. Xx

Betty is Five

On September 25th 2019 Betty will be five years old. A selfless donor has given me five years not having to endure dialysis. It has gone so fast and I am grateful for every minute not spent attached to a machine to keep me alive. This is my first scheduled blog, as I’m on my jollies yet again having a large drink in my donors memory.

I had clinic last week, and for the first time in a long time my kidney function has jumped to above twenty percent. My nephrologist is actually going to wean me off the steroids so they don’t do more harm than good, meaning my big fat hamster cheeks will hopefully go too. Weaning made me incredibly sick last time so it will be a slow process. I have lots of trips to make sure I enjoy after all!

I’ll be off to see an endocrinologist to check my bone density, and a dermatologist to check my skin. The meds affect everything so I’m glad I will finally get these appointments. Fingers crossed all is ok.

I always said, so long as I got five years from a transplant then it would be worth it. My first transplant from Steve lasted barely five seconds so the fact Betty has made it this far is a phenomenal, especially with all the complications I’ve had. Organ donation is amazing, if you are not signed up then please consider it. And to my donor I raise a huge glass, you are a hero my friend 🥂

Betty Bounces Back (Again)

Well my head is well and truly mashed. What a monster of a month. After my biopsy I popped off to Turkey for a few days. Was a lovely, sunny trip but I came home with the beginnings of a UTI, probably after spending the entire time lolling in the pool like a hippo. But this UTI wasn’t shifting. The weekend after I ended up in A&E, where they absolutely hate kidney patients. One because we know what’s wrong better than they do and two because we are awkward to get blood out of and fluids into. They got blood eventually and sent me home with antibiotics. 

Fast forward to the next day, I receive a phonecall from the hospital asking me to come in immediately. The lady on the phone however will not give me any details, so in my head I’m either dying or there’s nothing wrong and they are being dramatic. I still felt rubbish though so I had to get my lovely neighbour to drop me back at the hospital like a leper. Cue a wait of hours and hours, more blood tests done this time by my fab dialysis nurses to be told I am being admitted. This is the worst thing to tell a long term patient. We already spend way too much time at clinics, appointments and waiting waiting waiting for results, doctors and tests. Being admitted means a night of no sleep, being poked and prodded and in my case, being near sick people who can potentially give me bugs. I hate being an inpatient. I’d imagine the hospitals hate it when I’m an inpatient too. I am a grouchy inpatient. 

Finally after what seems an eternity a doctor arrives who has a tiny bit of kidney knowledge (I’m not in a big hospital, this one has no nephrology department) who tells me I have ecoli and it has got into my blood. Joy of joys I have a blood infection and my creatinine is through the roof. Turns out my immunosuppressant levels are also ridiculously elevated meaning this infection has just been able to run rampant. Betty is not a happy kidney bean. So now I am a very extremely grouchy patient. Amazingly they get a line in me using an ultrasound and start pumping me full of drugs and fluids whilst I seethe. 

They let me home the next afternoon after deciding I could be treated with tablets, and after me moaning a lot about the three hours sleep I managed with all the old ladies screaming and talking to me through the night. By this time I am exhausted both physically and mentally and take the week off work with a lowered immuno med dose. 

This kidney failure malarkey is utterly soul destroying, brain muddling and just plain old upsetting. It’s an emotional rollercoaster every single time waiting for results. If they’re bad you accept it, cry your tears and try not to think of dialysis. If they’re good you are elated for a time, but then the worry comes back. So much up and down that I’m not surprised some people give up and just stay down all the time.

This morning was a good example. I went back again for more bloods. I have been on the antibiotics for two weeks so the ecoli should have gone by now. The wait was horrible. But luckily this time my results have stabilised and my creatinine has returned to its base level. My immuno level is acceptable. Betty is ok again. Again. For now. Hopefully we are still on the incline of the rollercoaster and not at the peak. My poor head 😩