Living With An Invisible Illness | Tea Talk #2 | Sitting In The Clouds

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 [tea talk – a new segment on my blog where I ramble about the goings on in my life while sometimes drinking my favourite drink…tea]

WARNING: This post isn’t my usual upbeat one.


Welcome Back!!! I knew this was going to happen but didn’t realise how quickly…yes, that’s right, I’m not drinking tea, I’m drinking water but at least I’m drinking something and to be honest tea is mainly water so I’m cheating too much. And as I now go to pick up cup and take a sip I realise there isn’t actually any water left…okay so now I’m cheating.

This is me….

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Now I know I just bombard you with a dozen+ selfies and pictures but don’t worry I know exactly where I’m going with this blog post…I think, kind of, umm well not really. These pictures just show a glimpse into my life and some of my best memories but sometimes pictures don’t capture everything. I’m saying this because out of my 19 years on this wonderful earth, I’ve spent 12 of them years living with an invisible illness. No, I’m not talking about a mental illness, although those illnesses are horrible as well, to be honest all illness, invisible or not are cruel, but I’ve personally been living with Chronic Kidney Disease.

October last year, my dad donated his kidney so I could live a better life and since that day, my life has never been better. However, if he hadn’t of been so selfless, my life could be so very different.

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I think my dad and I are the most bonkers in the family and I believe it’s because I now have one of his kidneys.

Let me know if I’m wrong but I bet about 90% of the people reading this blog post won’t have a clue what Chronic Kidney Disease is…and from now on I’m calling it CKD because the full name is too long to write. Now I had to look this up so I didn’t write it the long winded way round and confuse everyone but basically CKD is a condition characterized by a gradual loss of kidney function over time and if untreated could lead to death. And because it’s kidney related, it’s invisible to everyone unless you personally know me and I pluck up the courage to tell you…which I’m doing in this special #teatalk episode today. I’m not writing this blog post for sympathy, I’m doing it for awareness. All awareness for this illness is vital as in April last year 3,000 transplants took place but a further 5,000 were needed. I’d say the one plus side to CKD, and any kidney related illness, is the fact you can have living donations, meaning people who are alive, like my dad, can donate. Why? You ask….

Everyone has 2 kidneys but we can all survive with just one. Meaning everyone could donate a kidney and save thousands of lives. 300 people in need of a kidney die each year. That’s almost one a day! Now to me that’s crazy stats for something that is avoidable.

However, CKD is actually a lot more common than one may think. 1 in 10 people suffer with CKD in their lives. But, 1 in 50 young adults, that’s me, suffer with it. For a young adult, like myself, having CKD is not that common. I’m one of the lucky ones that was able to get a kidney from my dad, meaning I didn’t have to go on the donor waiting list or even have dialysis pre-transplant. What’s dialysis you ask?

Dialysis is, in simple terms, a machine that does what your kidneys are supposed to do but can’t. The machine filters your blood so it’s clear from toxins. Usually dialysis happens 3 times a week in hospital and it takes over your life.

I’m so grateful that my dad stepped up to donate his kidney because otherwise I’m not sure where I would be today. When I went for my transplant last October (2015) my kidney function was down to 5%. I was suffering from mostly all of the side effects, tiredness, and that’s not your “I’m so tired” when in fact it’s your own fault because you only got 3 hours of sleep because you stayed up watching Netflix, I was so tired I would sleep 12 hours at night and basically sleep all day, I was probably only awake for roughly 2-4 hours a day, I had no taste when eating, I suffered from itchy skin, major cramps and a lot more. My life wasn’t great. Now I could bore you with the history of how I came to get CKD but I don’t want this blog post to be hours long so I’ll make it short.

The town I used to live in diagnosed me wrong. When I was 3 my mum kept taking me to the GP with urine infections and the doctor kept giving me antibiotics and then sending me away, only for me to come back with another infection. The doctors didn’t pick up the reoccurring issue and only when we moved town and I got another urine infection, my mum taking me to the GP once again, did they realise that having this many infections wasn’t normal so they referred me to a specialistic. Eventually, I ended up in the care of the amazing team at Great Ormond Street Hospital until I was 18 (last June) so I moved hospitals and the hospital that I’m currently being treated at, was where I underwent my transplant.

At first, doctors said that I wouldn’t need a transplant until I was in my early twenties because although my kidney function was deteriorating, it was steady. However, at the end of 2014, beginning of 2015, my kidney function rapidly started to decrease, which is common in end stage kidney failure. That’s when both of my parents started undergoing tests to see if they were compatible. Luckily, my dad was.

So after months of tests and multiple transplant dates being set and moved and cancelled, the day of my transplant came. To  be honest, I was more nervous for my dad on the day. This transplant was something I had to undergo for my own health. My dad on the other hand was going through this major operation out of pure love and selflessness. He is truly a remarkable man.

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This picture was taken a few days after my transplant and after my side effects of the pain relief wore off, it was incredible how much of a difference I was feeling in myself already. Of course the pain was still there and I was still super tired because my body was busy healing but overall, I felt good and that’s something I hadn’t felt in a long time, without realising it. Some transplanted kidneys don’t work straight away and some don’t work at all. Luckily for me, my dads worked instantly and both mine and his recovery have been overall smooth. My dad has had some issues but he’s on the mend now and he says he wouldn’t change his decision for the world after seeing how much better I am.

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Above is a picture of my dad and I only a month after transplant. People would come to visit me at home after I was discharged, I was out of hospital in 6 days, and say “I thought you would be attached to tubes and machines”. To be honest, I didn’t expect to be home as quickly as I was but I was young and they transplanted me before my kidney function was properly failed so I was able to recover quicker than most patients. My dad was out in 3 days. Unless a serious issue occurs, most donors are out within 5 days and recipients are usually out within 7-10 days.

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It’s now been over a year since my transplant happened, which is something I still can’t fathom. This year has whizzed by and thanks to my dad, 2016 and truly been the best year of my life. With his kidney, a healthy, working, amazing kidney, I have been able to do and go on so many adventures with my partner in crime, Tom, who I met shortly after my transplant, in January. I will never have the words to thank him for changing my life and allowing me to become who I am today. But it wasn’t just my dad, my mum, who also put herself forward, but wasn’t able to donate because her kidney function wasn’t as high as the hospital wanted, was there each and everyday during my stay at hospital, helping me through and cheering me up. She took weeks of work to look after my dad and I after we were both home, becoming our rock in a time we needed her support the most. Without either of them, I wouldn’t be where I am today and I will never be able to show how much I love them both.

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My dad and I on Christmas Day last year, 2 months post transplant.

You may be thinking now that the worst in over and that a transplant saved me. In some ways it did but Chronic Kidney Disease didn’t get its name for fun. Chronic means an illness persisting over time and constantly reoccurring. *touch wood* but my dads kidney could fail at any moment causing my health to deteairoate and repeat the cycle all over again. However, the second time round to be a lot worse. Anyone who undergoes a transplant will hear the doctors repeatedly tell you that transplantation is a treatment and not a cure. I will never be cured on my illness and I will always suffer from CKD. I’m just in a time of my life where I’m healthy and happy. I know that my dads kidney probably won’t last my lifetime as I’m so young so the chances of me needing a kidney again is high. But I know what my life is like now but also what it could be some time down the line so I’m enjoying every minute and learning to appreciate the little things.


It just goes to show that some people who look normal and healthy from the outside, may be suffering on the inside. I now have a warrior wound (my scar) and it’s a part of who I am.  I wanted to write this blog post to increase awareness for not only CKD but all invisible illnesses out there. I was one of the lucky few to have such a smooth and great recovery, others may not be so fortunate. Please take care of one another and remind your loved ones how much they mean to you.

I realise this post wasn’t my usual happy post but I wanted to write it and tell my story to my readers. Just because you may have an illness, it doesn’t have to be become the only thing people know you for. Many people who know me personally, know my struggles and what I’ve been through but Chronic Kidney Disease isn’t the only thing their minds think of when my name is said. Don’t let your illness control who you are. Each and everyone one of us is unique and I’m proud of my scar and what I’ve been through and how strong I am now. I wish I didn’t have to go through what I did at such a young age but I did but it doesn’t define me. It’s part of who am I but it’s not the only thing I am.

Please feel free to leave any questions you may have in the comments. I will be happy to answer any relating to the topic I just discussed with you all. Please remember it is a sensitive topic, not just for me but for others reading so be kind with your words.

and until next time,

xoxo, rachel 

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6 thoughts on “Living With An Invisible Illness | Tea Talk #2 | Sitting In The Clouds

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