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. 💜
We spent most of last weekend whizzing around the Arctic Circle on a boat. Bit random I hear you say. Well, yes it is, and yes it was. Steve booked it ages ago and only told me about a month ago. It was a nice surprise and was somewhere completely different. I’m not sure what I expected but what a beautiful country. We flew into Oslo then caught another flight to the biggest city in the Arctic Circle, Tromsø. Where it was nice and hot in Oslo it was a very English ten to fourteen degrees up North.
My blood results a few weeks ago saw my function drop again so we intended to make the most of it, as with all the other trips we have booked this year. So even though everything cost an absolute bomb, we dined out on seafood and steak. No whale though, that would just be a bit weird. We took a boat on a fjord cruise, well we are geology nerds after all, and another to go fishing. Steve caught dozens of Arctic Cod but we ate the one I caught as it was the biggest. It also never goes dark there in the summer. Twenty four hour sunshine. Very disconcerting but luckily the hotel had blackout curtains. It was a whirlwind trip but totally worth it. The people were lovely as was the backdrop. Plus, as you can see in the photo, I can take my meds anywhere!
Now we are back, I am on the hunt for a new job. I’ve had a few interviews which I’m terrible at but we shall just have to wait and see what the future holds. What a joy it would be to get paid to write hey. I could even do that on dialysis.
Anyway, Steve is grumpy with me today as since leaving my last job I’ve not been doing much other than feeling sorry for myself, so for all the world to see, Ste I am eternally grateful for everything you do for me and for putting up with me when I’m being a downer. Do you want another coffee? 😘☕️
So we’re now in June and it feels like the year is running away with us already. We’ve been to Venice, I’ve had my 33rd birthday, my gorgeous sister has gotten married and now we’re counting down to our next holiday. Luckily, my levels have stabilised, albeit at a lower level, but stable is stable and that means my diary is getting booked up with trips away and days out. I’ve got to make the most of it hey, travel whilst I can, see the world whilst I can and enjoy being dialysis free whilst I can. I think some people think we live a life of leisure, away enjoying ourselves all of the time. The thing is we suffered for a long time to get where we are, and knowing it’ll all come crashing down one day again motivates you to live for the moment. They don’t see me on the days when I can’t get out of bed, the days I can’t walk right as the dialysis I did has wrecked my bones, the days my blood pressure is so all over the place I daren’t go out. A lawyer once predicted how long I’d live for. Knowing that number means I’m going to cram as much living into my life as possible. Yes me and my hubby enjoy lavish holidays and nice meals out, but you know what, we deserve to enjoy these things whilst I’m well enough to appreciate them. We have to spend time together doing ‘normal things’ before the time comes to hook me up to that ruddy machine and our life again revolves around hospital trips and doctors. At the moment we live our lives by counting down the days to our next adventure. And it’s a fabulous thing to be able to do that.
It’s has been a difficult few months transplant wise. Betty the kidney has been unhappy since the last hiccup with the gout drugs. She loved being on very few meds but as soon as they were started again my levels went nuts. I’ve been having blood tests almost weekly since November with a little break over Christmas. My urea levels were crazy and my creatinine jumped. My function dropped to 18% at its lowest. At 10% they start you on dialysis again.
Cue nightmares about dialysis needles and difficult days trying to drink as much fluid as possible. Constant nagging about drinking by my family, worrying about food I’m eating that may exacerbate the problem, worried my increased weight will be putting strain on Betty, stressing as I’ve been too exhausted to exercise. Ugh. I’ve been stressing myself out as well as those around me, giving myself headaches and generally making myself miserable.
So then it was time for another blood test, the dreaded post Christmas binge blood test. Usually this is the time of year when sugars, cholesterol and potassium levels are elevated. Anyway, bloods taken, the inevitable nervous wait for results and an angry phone call later as they are taking so long, and I receive a copy of my results whilst at work.
I cried. My levels had improved. I cried with relief. My function had gone back up to 24%. I cried when I got home. My creatinine had come down to within my normal range. Other than me being incredibly anaemic Betty the kidney was ok. As in not failing. As in I just need to drink more, a lot more. Phew. I’ll be injecting myself with aranesp for the foreseeable to hopefully raise my haemoglobin levels and thus give me more energy and less headaches but phew. A big phew. The biggest relaxing sigh ever with no more crying as that’s a waste of fluid and well, I need as much of that as I can get!
Happy new year everybody, may your 2018 be happy and healthy. #GoBetty
First thing to say is that Betty the kidney is fine. All is well in that regard. There has however been a slight hiccup in another area, all caused by a med to make my toe feel better. Typical.
It started a few months ago when I complained of pain in my big toe joint, cue a unexpected diagnosis of gout. I thought only old ladies get gout but no it seems youngish ladies do too. I had to have a blood test to check my Uric acid levels, then forgot all about it especially as my toe got better.
Then a few weeks later a GP I’d never met rang to say my levels were out of whack and that he’d prescribed Allopurinol, a well know, widely taken gout medication. Fine I thought, what’s another tablet.
Now I’m a tired person, I go to bed tired, wake up tired, live tired. Always exhausted, never a let up. So anaemia was never something I’d much notice.
Come last week, I had my three monthly bloods done. I hate waiting for the results, it’s like waiting for a kidney all over again. A few hours later a doctor from the hospital rings, causing instant panic and almost brown pants. My first question is obviously ‘what’s wrong with the kidney?’ which I think should have been his first port of call, to tell me it was fine. But no he starts prattling on about my blood count, I had to practically shout at this poor guy to tell me if the kidney was ok. It was, so now whatever was wrong I knew I could deal with it. He explains my white count is too low, and they think I’m too immunosupressed. Ok, didn’t know that was a thing. So I stop one of my immuno meds and carry on. Come the end of the week I tootle off to see my transplant doctor thinking all is well, just a slight med alteration.
Well no, it would never be that simple with me would it. My white count is so dangerously low it’s clear my bone marrow has stopped working because of the high immuno med levels. WTH. Just the mention of bone marrow meant it was serious. It had even stopped making red cells. Maybe that was why I was so tired recently? Anyway, after more brown trouser moments I mention the allopurinol. He wasn’t impressed, turns out that drug should never be given with the meds I’m on, and he is going to write an angry letter to my GP. He has stopped most of my meds now until my levels recover and has told me I should stay in the house and not go out! That ruined a planned weekend out but I’m still going to work. My boss was very understanding luckily and has left me on my usual quieter shifts where I don’t actually come in contact with that many people. Otherwise, I’m stuck in. No contact with people in case they have germs. Slathering myself in alcohol gel and not picking up dog poop. Fun fun. I’ve been baking to alleviate the boredom so now I’m getting fat instead, and spending lots of money online.
So I’ve another few days before I’m in for more blood tests, then seeing the transplant fella again. Fingers crossed my levels are improving coz at this rate I’m going to be a skint whale by the end of the month. Great for Halloween though 😆🎃 🐋
I’ve been thinking a lot about time recently. About how little of it we all actually have. About how it’s the only thing we will all run out of. About how so many of us waste so much of it on petty things, on silly things. On holding grudges, on worrying and on being afraid. Life is so incredibly precious whilst also being so incredibly short. Some people live to be elderly and yet have not enjoyed a full life, whilst some die young after living at break neck speed. I have nearly died on numerous occasions but only now as I get older, see my friends getting married and having children do I see how rapidly it all goes. I remember my school days like they were yesterday and yet that was now twenty years ago and I’m suddenly in my thirties, probably half way through my life. My little transplant is now three years old and that too has gone extremely quickly. I’m acutely aware that I should be living life to its fullest, if not for me, then for my donor.
Time will catch up with us all eventually and so we have to do the things we want whilst we can and are able. I know I am likely to die young(ish)because of CKD and I made my peace with that a long while ago, I know I probably won’t have children and I know I will be back on dialysis one day. So I know I must enjoy my time on this earth whilst I can. Maybe I am more aware because my time has nearly been cut short before but seeing people squander it is frustrating.
You never know when your time will be up, so kiss your loved ones, accept that job offer, go on that holiday and buy those expensive shoes. We all live on a rock that’s just floating in space after all, so that thing you’re wasting time over is probably not even that important is it?
I’m sat here today watching another rerun of TopGear on Dave thinking ,what on earth am I going to do with myself?’. I worked weekends from January to early April, got exhausted from the travelling, got some disappointing blood results and left. I lost my DLA and was denied PIP by a point last year and so I applied for Job Seekers next. Apparently as I haven’t paid any national insurance for the last decade (you know, whilst I was busy being seriously ill) I am not entitled to any help. That kind of screws disabled people over doesn’t it. Way to make me feel useless!
So now I’m busy hunting for a part time job where I can sit down, that isn’t too far away and won’t kill me. It’s so disheartening knowing I tried so hard at university, twice, only to end up hunting down a minimum wage job that I can’t even find as my work experience is limited. I’m definitely an expert on hospitals, needles, recovering from horrendous operations and being a patient, but I don’t think that looks so good on a CV.
I enjoyed working, it made me feel sort of normal ish again even if it was knackering and I had to take my pills in front of people. It made me feel like I was contributing, even if it was only in a small way.
Now I’m a couch potato again, endlessly searching job sites and getting nowhere. I’m still going to see my personal trainer, I even lost some weight, but the motivation has to come from somewhere and if I’m feeling low I don’t work half as hard. I think I’m just generally fed up, bored, and tired as I always am. It’s my birthday in a few weeks so fingers crossed things pick up. I’m off into Liverpool with a friend tomorrow to meet one of my favourite authors, Jo Nesbo, so at least that will be fun. Got to stay positive and all that, me and Betty will get there eventually.