Stent removal and health update – Tuesday 14th June 2016

Hey Everyone,

It’s been a while since I last done an update so I thought as I had my stent removed yesterday I would do an update today.

The ureter came with the donor kidney and was connected to the bladder with a small incision. A stent is a thin, hollow tube which is place inside the ureter to keep it open and allow connection to the bladder to heal. The urethral stent needs to stay in place for about six weeks after transplant.

It is now 9 weeks (2 months and 1 day) since my transplant and yesterday I had my stent removed.

Before the surgery I did want reassurance and seeked it from many CKD groups however most said it was uncomfortable but not painful and others said it was really painful so I still was unsure what to expect. I was really nervous but knew it had to come out otherwise it would cause all kinds of problems plus I felt restricted when I did go to the loo because of the stent.

So operation day came which was yesterday 13th June and I was told to get into a hospital gown. I was then wheeled down to theatre where I actually had my transplant which was weird.

Anyway it wasn’t very dignified and it took them a while to get the tube in because my uretha is abnormal lol (only me) and after a while of trying to get it in and putting a liquid kind of general anaesthetic in the area I still felt everything. Now I must admit it was actually pretty awful for me and stung like hell. Although the pain wasn’t enough to make me cry it was enough to make my eyes water and I made some funny noises lol. It felt like I was having injections inside to be honest so yeah not a pleasant experience although the surgeons were amazing and it was the same surgeon who carried out my transplant and she’s amazing and lovely and made me feel at ease. I mean she even put on some 80s music beforehand lol as she knows what I’m like 😂

After a while, and to me it did feel a while and several attempts of trying to get hold of the stent because it also was in an awkward place it was out!

It was a long thing thing that looked like a tape worm to be honest. I was like woah that was in me! Lol!

After going to the loo stung and burnt like a if I had a bad UTI (Urine Tract Infection) but before the procedure I had an antibiotic to avoid any UTIs.

It did bleed and today it’s still uncomfortable to wee although I no longer feel restricted! It is still bleeding today but this is all normal.

Two weeks ago I was told that I could now go to Cambridge every fortnight and so I’ve got my appointment this Thursday and so far everything is going well.

I went clubbing with my friends on Saturday and had only a few drinks and I was happy and spent my night dancing and laughing!

My life is now slowly coming back together and I’ve made so many plans to be excited for. Yay!

Thank you for reading! Xxxx

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Feelings and truth – Tuesday 3rd May 2016

Hey Everyone,

You may of already read my previous post with the dreaded news that my transplanted kidney isn’t working as well as it should be and so I need to go in for a kidney biopsy and scan to see what’s going on. Now the news took me and my close ones by shock and a lot of tears have been shed but the thing is they did warn me that in the early stages trying to balance out your body isn’t easy and it isn’t always a smooth ride. I have done some research and it seems common in the first 6 weeks and sometimes it’s as little as tweaking medication or it could be worse which I’m trying not to think about at the minute. This is shit news and just shows that having Chronic Kidney Disease is pretty much a rollercoaster and never smooth sailing, I think almost everyone has a glitch at some point after transplant but until it’s happened to you, you don’t realise how much it can effect you mentally. I have just now started a new hobby of putting together an aquarium of tropical fish and because the bloody thing has gone milky I have been concentrating on how to make that right. Anyway the thing is we need more awareness about this awful disease and even the after math, the thing is you are never in the clear and you are constantly worrying about your health.

After the initial shock I have done some research and found from forums and amongst my kidney friends that this can be quite common within the first weeks to the first 3 months of transplant. Doctors have also told me it is quite common and I need to try my best to keep my head straight and keep focused and just try and remain hopeful that hopefully they can find out what’s wrong and sort it out to get on the road of recovery. The thing is other than being sore I feel okay, I’m tired and I had a foggy brain which I call med head but other than that my urine output seems to be a lot and things in that way seem to be working. I must admit I’m not a big drinker so I’m going to try and drink more.

Life is literally a very hard journey for some of us and it’s unfortunate but the point is you can’t control what happens with your life. It’s even scarier knowing your life is in someone else’s hands, your life is being prolonged by treatment and medication and without it I simply wouldn’t be here. What I am grateful for is that they’ve picked it up early and not late when it’s got even more advanced and at a place where it’s impossible to save. Doctors say try not to worry but it’s a natural human thing to do and of course I am worried. I am 26 with a life that is on pause and has been for such a long while now and all I want to do is have a somewhat normal life and it seems a million miles away but all I can do is just keep going, keep getting up, brushing myself off and continuing my journey in hope that one day there will be nothing but smiles on this face of mine!

I am grateful for all the wonderful support and messages I’ve received throughout my journey as well as the recent news of my cretanine creeping up.

Fingers crossed and all I ask of you is to keep your fingers crossed and prey for me, whatever your religion, even if you don’t have one just send positive vibes. I need them mor than ever.

Thank you ❤️

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10 days after kidney transplant UPDATE – Friday 22nd April 2016

It has now been 10 whole days since my transplant and mums live donation took place on the 12th April.

I thought I would try and update you where I can, when I can as at the minute it’s a little hit and miss.

I must admit the pain is very much there and consistent and still pretty agonising when pain killers are due, I am still on full whack pain killers because the pain is pretty intense, mainly at the bottom of my insision and where my drain was. It’s a pretty awful dull achey intense pain but it’s very hard to describe properly and I will be thankful when it goes.

So yesterday I had my first appointment since my transplant and I wasn’t really told much as its early days accept my last results shew things going in the right direction and the doctor wouldn’t be changing my medication as of yet, I also had my bag removed where my drain was and redressed with a simple dressing, my stapled scar underneath my belly button was also redressed, 14 staples, really not looking forward to them coming out. My next appointment is Monday and I can’t say I am too excited as I am going on my own by hospital transport and I suffer with anxiety. Plus I haven’t a clue where I am going.

I got a call from Addenbrookes today to say that I will be having my stent removed on 13th June which I also am not looking forward to. For those of you who don’t know what a stent is, it’s a piece of plastic protection the new tube from transplanted kidney to the bladder, it takes time to heal them the plastic cuff gets removed by going through the uretha. Yes I can’t imagine that will be too pleasant but I’ve no choice.

I’m on 28 lots of medication at the minute, a lot more than what I was on pre transplant but it’s all to keep me in best possible shape and try to prevent rejection.

Today I made dinner, I had to sit down throughout and take several rests and was in agony so I don’t think I’ll be doing that again any time soon. I just had a shower which was lovely as it help ease the pain and it was so nice to wash my hair as I’ve been unable to since having the external bag drain.

I’m now settling down for the evening.

My mum who donated me her kidney has been chronically fatigued and been suffering with flu like symptoms but this is to be expected that she will experience Chronic Kidney Disease because her body needs to get used to having one kidney and that takes time. She is also in quite a bit of pain and still has gas from surgery which causes further discomfort.

For both of us we are pretty much sleep deprived as its very uncomfortable and sore to sleep and you really do have to accommodate your body to help get yourself as comfortable as possible which is virtually impossible at the minute.

We’ve both been mobile but the pace is slow and we get out of breath quite quickly so it is a struggle.

Giving life and receiving life is an amazing thing, but unfortunately the cost is pain but I always say no pain, no gain.

I will not sugar coat how I feel I think being real helps others who are wondering and worrying. I know different people experience the same surgery in all different ways but this is how I have personally been.

I find the best way to get as comfortable as possible in living room is sitting in my single recliner with two bed pillows either side of me with my legs up, and in bed I literally have 5 pillows and a thin divert supporting me as laying flat is very uncomfortable and I am someone who sleeps on my belly and in the feteal position which is very awkward when you can sleep neither so my sleep is pretty much broken throughout the night and I do have to keep going to the loo which luckily I always did anyway but now I just go a bit more lol!

I will try to update every few days.

Thank you for reading 🙂

Onwards and Upwards

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Addenbrookes tomorrow, my feelings and my journey so far – Sunday 10th April 2016

Hey Everyone,

So tomorrow is the day that I am admitted to Addenbrookes hospital and I am petrified. Mum is also pretty scared about everything and we both just want it to hurry up and be over with so we can go home and recover. So operation is on Tuesday and all going well mum should be discharged within 4-5 days whereas I’ll be discharged in around 6-7 which is a long time to be in a hospital bed.

At the minute I’m not feeling very positive about stuff because it is pretty daunting. This is only the second time in my whole life I’ve had a proper operation and it is the most major and that alone scares me not forgetting that it’s not just me but my beloved mother too which is even worse when you know your loved one is under the knife. 

My dad has both his girls under the knife so he’s going to be twiddling his thumbs just hoping to hear the good news that everything went well and we are in recovery. 

Our operation is Tuesday morning. My Mum has her op at around 8am and will be in theatre for around 4 hours then it’s my turn, argh. I just hope they can tell me mum is okay before I get sent in because as soon as I know she’s okay I know I’ll be able to relax a little more and be less anxious. 

I was diagnosed over a year ago, my kidneys failed a year ago on May and in June it would of been a year since PD. I have learnt so much and the main thing is learning how strong I actually am and you really do have to be. There is no use me crying about something I can’t change but allow changes to happen to make me have a somewhat normal life. I know it’s not going to be easy, I’ve never expected to. I’ve been through some hard stuff in my life and it’s only taught me that I am strong and that with the right mind and positive soul anyone can get through some dark times. It’s hard, there’s wobbles of course. I am only human but more often than not I just get on with life, it’s the best way.

Your support means so much to me and I have been overwhelmed with the messages I’ve received, and once again you find out who your true friends are… I mean I am going for life changing surgery and so is mum and some people haven’t even bothered to wish us luck, it’s sad but always happens when you go through shit.

Anyway I am practically falling asleep writing this and I’ve got to do packing in the morning sooooo I will leave it there and hopefully blog within the next few days. 

It’s been a while – Sunday 13th March 2016

Hey Everyone,

It has been a while since I made a blog on here because I have been caught up in life.

Today it is officially 28 days until my parents and I are off to Cambridge for mine and my mum’s big op. My mum is donating me her kidney on the 12th April but I am being admitted to hospital on the 11th. How do I feel? Scared to be honest. I am actually worried about the pain and the recovery process. I am not so worried about dying as this is an operation that will be carried out by some of the best surgeons in the United Kingdom and they do thousands of these operations. I am personally more worried about my mum then myself, and I can imagine it’s not going to be a pleasant experience but thinking of the long wrong, this is the start of getting my life back.

It’s going to be a long road of recovery, but hopefully in the long run it will be all worth it in the end.

What I have got recently from a few individuals is several things to do with Chronic Kidney Disease and it worries me that people are fairly uneducated on such a devastating and terrifying illness, an illness that kills people.

I have selected a few questions that have shocked me and I will also freely answer them just to put stories straight.

Don’t use your disease as an excuse, you’re just lazy
My disease takes control of everything. I may come across ‘lazy’ but in matter of fact I not only suffer with Chronic Kidney Disease, I also suffer from everything that comes with Kidney Failure. I suffer with Chronic Fatigue, spirts of anemia where I have to inject myself in my own thigh. The smallest of tasks leave me breathless and shattered and if I have gone out for the day with someone then guarantee as soon as I get home I will be asleep. Not only that but I can’t walk very far without having rests in between. Kidney Failure makes your life feel like you’re just existing and not living. Just because you don’t see an illness doesn’t mean we don’t have it. There is a difference between being lazy and being chronically ill.

Get a job.
I had a job for 8 years, working my way up to management but unfortunately I had to give up my continuous health decline. People who need organs desperately tend to not work, not because they don’t want to but because they physically are unable too. I can’t concentrate, I am forgetful, I am not allowed to lift anything, I suffer with Chronic Fatigue and I am tied to dialysis 4 times a day. Do you not understand how much I would love to have a normal life, with responsibilities and independence? It’s something that could easily drive you very deep into a very dark place if you allow it to.

You spend too much time online, get a life.
Yes, that is correct and it is brilliant. It gives me freedom to be a person again, to join in with every day gossip. It helps me keep up to date with my friends who I can sometimes cannot meet up with due to being too unwell. After being diagnosed with CKD at such a young age I was in desperate need to find others, and making support groups have allowed me to do this, and I have met some amazing people. I am able to help others, which I love to do. It has also given me the opportunity to blog about my personal experiences. It’s just helped me feel still apart of a community that in life I feel so cut off from.

You’re not really ill, I got told you’re faking it.
The amount of times I have heard this is ridiculous. Kidney Failure isn’t something you can ‘fake’ it comes with a lot of symptoms. The best way I describe it is feeling like you have flu constantly. I have a catheter in my stomach going through my muscles into my peritoneum to carry out dialysis to keep me alive. Dialysis is LIFE. The fact is, if I didn’t do my dialysis, I would go into a coma, my organs would shut down and I would be dead in around a week. You can’t fake stuff like that!

People  really should learn not to run their mouth about things they have no clue about, maybe in future you should do some research before thinking you know everything because really you don’t.

I am surrounded by such an amazing support network and I am so very grateful. I have no time for drama, trolls or people who have nothing better to say to me then make assumptions about MY LIFE that I fight my arse off for every day, that alone is emotionally draining, and you think I have time to argue with you and your lack of common knowledge and compassion?

So, in a nut shell I am petrified of how close the op is and on the other note I have no time for drama and all the time in the world for those who care.

I will blog again soon, don’t forget to check out my Lifestyle blog at www.sabrinaslifestyleblogging.com

I will try my best to blog through my transplant recovery as I think this maybe beneficial for others to read as well as beneficial for myself.

Until then, take care everyone.
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Update on Me- Monday 18th January 2016

Hey Everyone,

It has been a while since I updated everyone about my current health.

Okay so I am still very poorly and I recently had blood tests which shew that my hemoglobin was slowly going down so I am guessing it will soon be time for some Aranesp injections for Anemia.

I have my Personal Independence Payment assessment on Wednesday, 4th time lucky. It has been a very long road and stressful fight to be noticed and to get what I am entitled too, its unfortunate that this is no longer easy to get and I feel for people in the similar categories of myself. It has added to my stress and anxiety and has made me feel down a lot so I am hoping this time we may just get somewhere.

I am still tired all the time, no energy and am sick a lot of the time. Life isn’t really fun at the minute, and I still feel like I am existing most of the time and I am so ready to start living now.

I haven’t heard much from transplant team but what I do know is that we are getting closer and closer to the big operation date where my mum will be donating her kidney to me, something I have not overly thought about because when I do it scares me. I will be admitted into Cambridge Hospital on 11th April and the big operation is happening 12th April and I will try my best to keep you all updated on varies of social networking site, this one being my main resource.

I am currently trying to raise money for Kidney Research UK. You can donate www.justgiving.com/DonateToKidneyResearchUK I am also hosting a Body Shop party at my home which will also be Charity Related and all money from our games etc will be going to Kidney Research UK. Every little bit helps.

I have some good news. I have no tattoos and I literally have just booked my first ever tattoo for the 19th February, it is something that I truly believe in and a quote I use often especially after last year being diagnosed with Chronic Kidney Disease and then both of my Kidney’s failing within months of finding out.

2015 was a terrifying, devastating year but it has opened my eyes wider and I have gained knowledge and so many amazing friends through my amazing support networks which I now have 6 of, you can find all these links on my  Thank Yous and Links  page.
I have gained so much knowledge and grown as a person and I pay more attention to my surroundings then ever before, I appreciate things so much more.

Last year in 2015 alone I received 2,290 views and 1,385 visitors which is AMAZING. I have received views and visitors from all around the world in the United Kingdom, United States, Australia, Germany, France, Puerto Rico, Finland, Philippines, Spain, Italy, India, Austria and Norway. In 2015 I published 92 posts.
So far this year in 2016 I have received 686 views and 183 visitors which again is AMAZING as it is still only January.
I am so very grateful for ALL of you who have took the time out to read about me and my journey and I thank you from the bottom of my heart.

My journey will continue, and I will share it all with you!

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It is a New Year – Saturday 2nd January 2016

Hey Everyone,

I wrote a status on facebook earlier and the purpose of this blog is to elaborate on that status.

Like many people every year I usually make up a New Years resolution that I normally fail to stick to, and this year I haven’t made any. However, I have given myself 10 key points to remember, to take into action and see if it makes me a better person. I may add to these 10 key points later on.
I will state my point and elaborate a little more into the point with my own views and comments.

1. Stay clear of negative people, negative surroundings and negative feelings.
I have learnt that negativity only brings me down and I can’t let unnecessary negativity into my life any more. Stripping out the negativity is a great feeling and although sometimes hard to do it is pretty beneficial in the end. Learn by it.

2. Always make a positive out of a negative, whatever this may be.
You can always make a positive out of a negative. This kind of attitude has kept me afloat. CKD was a massive knock for me, a negative one but I changed it into a more positive by allowing myself to gain knowledge and help others with advice and the creation of my support groups. As someone who suffers with many other negative issues I have made most of these positives by creating support groups. I love to help people where and when I can.

3. Never give up, even if I get knocked down I will simply get back up, dust myself off and continue.
Throughout my life I have been knocked down but instead of dwelling I just simply add it to my long list of mistakes, and lessons. Life is all about learning and that is simply what I do if I get knocked. You have to get back up and continue your journey, after all you only get one life, its best to make the most of what you have instead of what you don’t have.

4. Appreciate those dear friends and family members and supporters that I do have.
Although I only have a small amount of close friends now, I like to keep it that way because I can easily appreciate those who have stuck by me through the bad times. I appreciate those I do have instead of being sad because I have lost others, others that really couldn’t care less about my whereabouts.

5. Try to motivate myself more.
I have no motivation to be honest, it kind of went out of the window when I became unwell and lost all my energy and enthusiasm. I know this is something I struggle with but I want to try and motivate myself a little more.

6. Try to keep as healthy as I can, and take better care of myself.
I have a small appetite due to being unwell and feeling bloated with 2 litres  of fluid, but the food I do consume I want to try and make sure it is healthy, however I will treat myself now and again after all a treat here and there is sometimes much more better and rewarding than a treat every day. I need to make sure I look into my patient view more and keep tabs on my blood results.

7. Look at my surroundings, take in every detail.
Our surroundings when being paid attention to and admired can be beautiful. I want to pay more attention on the things that we all take forgranted. For example I went to the Beach with my Family to look at all the Seals and I looked around, I listened to the waves, looked at the beautiful blue sky shining on the seals that had just come out of the sea and how it glistened on their skin. I looked at the tiny babies along side their parents who were protecting their young. We do live in such a lovely place, and the surroundings can actually be pretty breath taking, after all this world was meant to be admired. As someone who suffers with anxiety doing such little differences made massive changes, it made me feel calm and at peace, it was a lovely feeling.

8. Remember that there are people who have lost their lives but have been not only inspirational but a hero with donating their organs to those who are in need of transplants. Also those who have gone through with Live Donation.
Before being diagnosed I wouldn’t of put this which is actually sad but a true fact. Unless you are close to such circumstance then it isn’t something that your every day person would think about. However, I wish people would pay a little more attention to those who are no longer with us but due to their inspiration decision to be an organ donor they have gone on to save several peoples lives. I mean how precious and amazing is that? It is these people who save several people from the same misfortune. Not forgetting those who donate their bodies to Science to help improve medicines and understanding. True heroes. Not forgetting those wonderful people who go on to be a live donor, losing something of theirs to give to someone else to maximize their chance of life, risking their own. I mean wow, what a person and again a definition of a hero.

9. Remember that at the end of every storm, there will eventually be a rainbow no matter how short or long.
I know in life there are some stormy times no matter how rough the storm eventually there will be a rainbow. I know my life is going to be somewhat stormy throughout but there will be good times, I hold on to hope as I think most things are very possible but sometimes things take a little longer than others, but that is okay because it would be such an amazing reward to eventually come out of a storm and be faced with a beautiful rainbow.

10. Don’t let my illness define me, take over me or identify me. Kidney Disease is only apart of me but it isn’t who I am.
I know of people who have let their illness take over their identification and I am not that kind of person. Unfortunately I do have this awful disease and yes it at the moment it takes up a massive part of my life and will always be apart of my life but I refuse for it to take over who I am. I am not my illness, my illness is simply just apart of who I am but it isn’t who I am. I want people to remember me for the person I am not the girl who had Kidney Failure, because there is so much more to me than this disease.

So, there you have it. My New Years Resolution is in fact just points to improve myself and my wellbeing and grow me as a person. My journey has only just began. It is a new year, a new journey is just beginning.