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 😩

Betty’s Back

🎶🎶Betty’s back, back again, Betty’s back, tell a friend.🎶🎶

So I’m on the steds indefinitely with Betty holding at 19%. Such a sted head this kidney. My creatinine levels come down with every blood test. Other than headaches the side effects have been manageable up til now too. Plus I’m feeling a bit perkier in myself.

The docs want to avoid dialysis as I do obviously, so at 15% function they will work me back up for transplant whether it be a live or deceased donor.

My biopsy results aren’t back yet either but boy oh boy the bruises are still there. The procedure itself wasn’t too bad in the end. If you can remember those things your nan had to get pickles out of a jar with the claw thing at the end, that’s basically what they stick in you, then press a button than cuts a little piece of the kidney off. In my case that then got chucked in a taxi to go to the labs in Liverpool. He did have to stick me four times instead of three hence the bruising. He also went extremely low down so I was walking a bit peculiar for a few days. The worst bit as ever was getting a cannula in me. I basically have zero veins near the surface of my skin. The guy was good though, didn’t freak when I screamed. Stupid hey, a million major ops and it’s still the blood needles that I hate the most. It didn’t help that all this happened about 6 hours after we landed home from our holidays. All the sleep we had had in Lanzarote was lost in one day at the hospital.

But…..all in all unless the biopsy comes back with something awful, which would be very unexpected as I don’t have an actual kidney disease that can reoccur, it as all as positive as it can be for a failing kidney transplant. Lots of trips are getting booked in believe me! #GoBetty

 

Betty Vs Rejection

My head is a bit all over the place. As are my emotions. I feel like crying and laughing all at once. It appears I am in chronic rejection. This means my kidney is and has been rejecting gradually over months and possibly years. My little Betty bean is putting up a fight. I have been booked in for a biopsy and am going to try a month of steroids to see if they help. Betty loves ‘the steds’ so fingers crossed. I am preparing for uncontrollable hunger, mood swings and a massive moon face. The doc was actually reasonably positive and thinks I could get another year or two from Betty if I’m lucky. I have asked if they will put me on the list again, but I imagine as I am pretty asymptomatic they will probably refuse for now. Live donors are also a possibility but I’m not ready to carve up my baby sister just yet. All in all, it could have been worse. I was half expecting him to tell me I’d be back on dialysis by Christmas. So Betty will be going bye bye, but not quite yet 🤞🤞

Note from my husband:

This year is 15 yrs since Christy and I met, 13 yrs later this May since her appendix burst and the results destroyed her kidneys, 10yrs since I donated my kidney and they messed it up, Betty the Kidney is 5yrs old in September.

A lot has happened over the last 15 yrs and the recent news that Betty is in chronic rejection is very sad, but Christy and I have discussed it and are relaxed about it. We always said we wanted 5yrs from an old kidney, which had been out of the body for a while, September is 5yrs. The doctor said that they hope for 12-24mths. It was a relief that we have a little bit more time to ensure we have as much fun as we can.

It’s a weird feeling, as all you can do is be there to pick up the pieces, provide the stability and support mentally and physically, when the down days occur. At heart we are both optimistic and it’s not so glum, that we have two potential live donors down the line, who are very active in providing Christy with a potential avoidance of the dreaded dialysis. If I could give her my other, I would, though I do have a clause in my will that insists on my one kidney (if the event ever arose) should be transplanted into Christy.

So folks, remember to stay positive, you have to try and find, then focus on the happy bits in situations like this, otherwise the negativity and pain will eat away at you.

Just keep on smiling

Steve

 

Is Betty going bye bye?

So my transplant of four and a half years is slowly failing. It has been for a long time, my creatinine has always run high. Unlike many patients I didn’t experience a slow decline, I just crash landed onto dialysis. So I don’t know how to look after a failing kidney. Or what symptoms to look out for. As far as I can tell I’m just tired and anaemic. No swelling, increased bp etc. My bloods today showed everything is great other than my urea which then ruins my creatinine levels. I drink as much as I can (which is not enough I know) and have short bowel syndrome which affects my fluid absorption. I want this kidney to last another year if possible as we have booked a big holiday for my husbands 40th next Feb. I’ve told my doc I will go back on steroids if it’ll help even though they made me a food monster as my kidney loved them. Fingers crossed it’s just another blip as my tummy has been misbehaving after a heavy few weekends. I have just over a week before I’m going back for another test so something needs to change. My priority is to drink more. Heavy exercise actually increases creatinine so more slow paced dog walking and just walking in general could help too. I’m a little overweight so losing a bit of flab can only be a good thing. Then I have clinic. Let’s see what the ole doc says.

Betty vs Biology

There are a number of thoughts that are always at the back of a transplant patients mind…‘What will happen when this transplant fails?’ or ‘Is my transplant failing?’. Fear, worry and anxiety are always there and you have to learn to live with it even though you are forever thinking the worst. I have had nightmares where I am hooked up to a dialysis machine, or I grab my stomach in fear before remembering my colostomy is no longer there. Then I get up, take my medications and get on with my day. 

It has been a busy few months in the Millar household. I started a new job, I popped back over to Turkey with my sister, we travelled to Sardinia for a week and amongst all of that, Betty the kidney was failing. My nightmare was happening.

My results had been steadily getting worse since the beginning of the year, so travelling had become our main aim even with all the uncertainty about the future. We planned another big adventure holiday for early 2019 and pencilled in the dates. However we couldn’t agree on where to go. Asking friends and twitter polls didn’t help. 

Then it was time for clinic. Time to see the nephrologist after an eternally long wait in a stuffy little corridor. He mentions the dreaded word biopsy and orders a million blood tests. I show no signs of rejection though so he tells us to book that holiday and fiddles with my immuno drugs. This is when we went to Sardinia for a week. Whilst away the hospital rings to reduce my immunosuppressive drug dose yet again. 

Upon our return I had an ultrasound to check the problem wasn’t physical and they confirmed that it wasn’t rejection. That left a medication problem or just meant that the age of the kidney was affecting its functionality (it’s now a 66yr old kidney). Still feeling anxious, I have another blood test, the first since my medication has been altered. With trepidation I log onto Patient View to check my results and low and behold the system is down. Typical. I am nervous for the rest of the day but the hospital doesn’t ring. Which means my levels are not a concern. That in itself is relief but doesn’t necessarily mean there had been any improvement. 

We tried to get on as normal, work, trips out, and then eventually maybe a week later I got an email to say new results had been updated on Patient View. The stress levels whilst logging onto that site are astronomical and always have been. I wonder if they know that? Anyway, Steve gets on before me and rings me at work. My creatinine which is how they measure kidney function in this country, had dropped for the first time and was the lowest it had been since April. Cue massive relief and a tiny tiny bit of hopefulness. My med dose has been practically halved and I am slightly upset it has taken them so long to lower it, but if has dropped after only a week, fingers crossed it will drop more. Now we definitely need to book that trip! It goes to show, thinking the worst doesn’t always mean it will happen. 💜