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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Fake Doctors!!!! – Tuesday 26th January 2016

Hey Everyone,

Looking at the title of this blog you may already have an idea what I am going to rant about.

So as someone who is has Chronic Kidney Disease and in need of a Kidney to save my life this has become more apparent to me and it infuriates me.

I run a Chronic Kidney Disease Support Group (www.facebook.com/groups/ckdsupport) on Facebook which contains 700+ members. I have come across fake Doctor’s within this group in particular trying to sell medicines, sell kidney’s or cures. This is fake Doctors giving out false information for money that can potentially harm someone physically and mentally. These are people preying on some very vulnerable people who are so desperate to live.

These fake Doctor’s giving out false information are vile creatures. Now the admin’s and I have had several reports and we have dealt to it according to the seriousness and mainly the person is instantly removed and blocked due to giving out false information of medication, cures, and selling an organ.

Now I come online to check on my blog now and again and what do I see? Some post on one of my blogs from a DR someone or other saying how they want to help me be cured from kidney disease and that I can buy an organ from him to save my life…This particular comment when on for a while and I didn’t even get to the end before reporting it as spam.

I am infuriated that these monsters try and prey on anyone to con them out of money.

There is NO cure. Medications and Medication advice should only be taken from your personal GP or Nephrologist and last but not least in the United Kingdom it is illegal to sell organs, buy organs and advertise such information.

DO NOT comment on my blogs trying to con me because I don’t believe you’re rubbish. For once put yourself in a patients shoes and see what you are doing is disgusting and could harm a human being, I know you probably don’t care as long as you get a pay cheque but seriously go forth and multiply!

For my followers and fellow people with Chronic Illness DO NOT take action from such posts online, if you see any I can’t hesitate for you to REPORT, REPORT, REPORT…These monsters need to be stopped…

Rant Over!

 

 

My Mother -Thursday 7th January 2016

This blog is exactly about what it says it is about. Of course I love my Father, so dad don’t think I have forgotten about you as I love you very much!

This is about my Mother. Why?

Because when I was diagnosed with Chronic Kidney Disease and I was told the devastating news that both my kidneys would eventually fail she straight away without a thought said ‘I will give you one of mine!’ Now this was something that I never ever imagined that my Mum would offer me, and neither did I imagine that I would ever have such a terrifying and life threatening disease.
So when we were faced with the results that my kidneys had failed 3 months later my Mum was asking all she could about how she could be a potential donor, and when the time came she began to do loads and loads of tests.
I can’t imagine how scared she must be but I know that she is more scared about losing me, her daughter than anything else.

The thing with people who want to be a live donor as well as a donor in general is a true inspirational person, a hero that goes on to save a life. Think of the courage it takes for a live donor though, the courage and the biggest selfless act. People like my mum should be acknowledged as our Angels. I believe 100% that she is my Angel.

I have had a great childhood with both parents who have remained together throughout and are still together today. I am an only child. My parents would of had more if they could but only got stuck with little old me and my mum has never denied the fact that she thinks I am a miracle baby, a well wanted child and I felt this throughout my childhood. I cannot fault my parents. I wasn’t born with a handbook but they did a bloody good job. I was never spoilt, but I never went without. The only thing I was real spoilt for was their attention, I could have all the hugs and kisses in the world and all the attention on me as I didn’t have to share it with siblings. Was I lonely? No, I was never lonely. As a only child you adapt to life and don’t know any better. If I didn’t have friends round then my parents when not busy would take time away to play games with me. Me and my Mum were always playing Barbie’s and I was always creating shows of me dancing and singing for my Parent’s too watch, poor them lol!

Anyway, slightly off of track now.

Some Mother’s and Daughters don’t have the bond that a Mother and Daughter have and some have lost their Mothers, I have great sympathy for these people as the bond between my Mother and I is very strong. Of course we bicker sometimes, but we never really argue…Not now anyway! My teen years were the worse years, I drove my parents insane at the best of times lol. Now I am grown I see my Mother as a person and the person she is. She truly is beautiful inside and out and has a massive heart of gold. She is caring, loving and has an amazing personality. If I am anything like my Mum when I have children then I can say that I done a brilliant job because she really is a brilliant Mum.

Going back to donating. This is a massive thing, a massive operation and I am genuinely petrified of the outcome. The initial operation on myself is fine but the risk of losing my Mum terrifies me, that is why I hope that phone rings before April although at the same time I don’t want it to because that would mean someone would have died. It is a very weird feeling and it is hard to explain and I guess no one would really understand unless they have been in this situation or similar.
Now the chances of death are teeny tiny, but obviously I love my mum to pieces so I am really worried.

I have seen so many stories of strangers being live donors to help save lives, I mean wow… How truly amazing are you! Inspirational and wonderful people. And for those who are on donor lists you too are amazing. I cannot put it across enough about the importance of life.

I have said many times that at the moment I don’t feel like I am living, just existing and that really is the truth but I haven’t given up hope on hopefully leading a next to normal life. I mean I know kidneys don’t last forever and they can fail any time so I will be in and out of hospital and on permanent medication but a chance to live, and do the things I want to do and accomplish things I want to accomplish is worth the down times. I mean after all I have no choice, this is my life.

My mum has been working a full time job whilst also caring for me, she truly is wonder woman. I cannot fault her in anyway. She has been there for me throughout. Of course my dad is and my partner Hannah has been amazing (I will write about Hannah soon), as well as Hannah’s family who have accepted me with open arms and adapted completely to my needs when at theirs. I mean I have my own little nail for dialysis at their now, hehe!

I know my mum reads my blogs, and this one is bound to make her cry. After all she is a rather soppy ol bean lol (she will now be saying lesser the ol and laughing and crying at the same time). So Mum if you are reading this blog this is for you…

Mummykins, I love you to the moon and back a hundred times over. You inspire me, you are my hero, you are my angel. You are the most amazing person I know and I am so lucky that you are my Mum.
You have helped me immensely throughout the good and bad times and I can never thank you enough. You deserve an award for not only ‘Worlds Best Mum’ but also ‘Inspirational Woman’ award. I inspire to grow into a mature lady like yourself, and if I have children and I am a good mummy like you then I know I would of done an amazing job.
I really appreciate you, although I don’t always show it. I am hoping this helps you see how much you mean to me.
You have chose to do the most selfless thing and even though I wish you didn’t have to, I know that you would do anything to give me the life that was stolen away from me. I love you with all my heart, don’t you ever forget that.

Your daughter, always…Sabrina

And so this blog now comes to an end, I just wanted to express how I feel and I have done just that, as well as I can in writing anyway hehe. I will try to blog more, I have been rather poorly so have been a little quiet.

Take Care 🙂

 

 

Feelings, people, CKD in the style of my usual RANT! – Saturday 10th October 2015

I am in a bit of a ranting mood today…

I have cut a lot of people out of my life. These people have no right to be apart of my life in any way, hence why they’ve been cut from it.

People I had known for years, I have cut out of my life. Why?
When I became ill it all started off with me being sick almost every single day, and genuinely not having enough energy to even lift my head up. I genuinely thought it was stress so shrugged my shoulders and put it down to that…

I was working at the time and had to call in sick, many times I was told I had to come in so would drag myself to work feeling like shit, having to get off shop floor in the middle of serving customers to be sick.

This is when the talking started….
‘She’s such a drama queen!’
‘She’s faking it!’
‘Such an attention seeker’
‘She is so lazy that she makes it up that she isn’t well to get out of stuff’
‘She’s a liar!’
‘She skiving, probably just hungover from the night before’

Now anyone that knows me knows that I do not call in sick or give up unless I really have too. I became so unwell that I was throwing up at least once or twice every single day, I had bad headaches, I got hot and cold, I would shake uncontrollably, I couldn’t function and I had no energy, no motivation, no anything…

Life was dull and I became very depressed. I was crying all the time. Crying constantly…I was so exhausted that if someone asked if I was okay I would just break down and cry. I have never been someone to cry loads but I genuinely felt like I had no control over my body, I was confused to hell about what was going on and I had people who was speaking about me to others, saying shitty comments. How did I know this? A lot of the time I would hear them myself, others would tell me they had said something but to be honest I never trust anyone because even people who claim they are the best of friends slag each other off. Not really something I have ever got, to be honest.

After my diagnosis, people were still talking saying I was making it up. Of all the illnesses that I could make up and they think I would sink that low and pretend I have failing organs?

The truth is I would love to be able to do what someone of my age does. I want to work, I want to see my friends, I want to chat to others, socialise, I want to go partying, I want to go on holidays… I just want to enjoy life!

Life isn’t all that enjoyable, in fact its the opposite and only another kidney patient will understand the challenges we face every single day and that we do really count our blessing every time we wake up…There is a fear that one day you won’t wake up. I am not exaggerating, its the truth. Kidney Patients can die, there is not enough awareness about for such a terrible and terrifying illness.

People have lack of knowledge of Chronic Kidney Disease and I don’t blame them I just think there isn’t enough awareness, adverts to make people aware that this is very serious, it can kill and there is no cure.

Imagine waking up every morning and looking in the mirror and congratulating yourself that you’re still alive. That’s just how it is.

To this day no one knows what caused my CKD, but me and my family have our guesses and it wouldn’t surprise me if we were correct.

I have some absolutely amazing people in my life and after many failing attempts of trying to become a member of support groups, I gave up and made my own and it was the best thing I ever did. It gives me purpose, meaning and a reason to be positive. I can help others, just by a friendly face, someone to talk to. There is nothing worse than feeling alone and it isn’t something I am prepared to be.

I get angry, I get upset, depressed and my anxiety is through the roof at times. I get insomnia and can’t sleep and constantly have restless leg syndrome. I can’t breathe properly, I feel sick all the time, I have no energy ever and the littlest tasks can wear me out completely to the point where I am exhausted.

The truth is my life is on hold…You get told ‘Yeah you can lead a normal life on dialysis’ I am not being funny but how on earth can you consider dialysis as part of a normal life? Its so very far from especially for those who get the symptoms like me. I have lost so much in just under a year…I lost my job, my house, my independence, my confidence…My life.

Sometimes it feels like I am only existing because this isn’t living…The fact is if dialysis didn’t exist where would I be? Dead.
And that ladies and gents is as blunt and black and white as it can get. Without dialysis I would die. I’ve been told exactly how long I would last without dialysis…1 week…Yes a week…Apparently depending the severity of your Kidney’s you organs will all shut down one by one until your body slowly goes into a coma and you die…Sounds shit, doesn’t it? But that my friends, that is reality…that is my reality.

I sometimes don’t know how I get the strength to put on my smiley face and continue like CKD doesn’t get me down, now I would be a liar if I denied that Kidney Disease gets me down. It does get me down but I have my up days and my down days. Feeling like you continuously have the flu is shattering alone.

I don’t see my friends very often, because I am genuinely too ill to socialise sometimes…I have lost the confidence to talk on the phone and those of you who know me would know that would normally be impossible, as I loved to talk but I hate it. I struggle with everyday tasks, tasks that you would do without thinking….Showering, walking, going upstairs, sleeping…You know the tasks that take no thought…I genuinely have to think what I am doing…

I can’t lift heavy objects, doctors orders because my catheter could cause a tear or a hernia…Not what you want added to your already long list of what you can and can’t do. I am not allowed to bath, because my exit catheter area could get infected, I shower every other day because I am not allowed to change my dressing too frequently…The little things I have to remember. I wear a piece of fabric round my middle constantly, its a pocket for my catheter.

Day in day out life can be hell but I always try to think positively in whatever situation I am in…I think there are people who are worse off then me, or I need to stay strong to help others going through similar things to me to stay strong…

I can’t say that I have won because within reason unfortunately its 1-0 to CKD, because my kidney function is no more. But I will fight back and continue to stay strong, knowing that some day I will see the light at the end of the tunnel, this tunnel is just a bloody long one lol.

I have had hundreds of people send me the most amazing comments, and I really am blessed to have such amazing people in my life. I am blessed to have some amazing friends, close family and my partner. A partner who I can honestly say is my complete rock, and without her I don’t know where I would be today. Hannah was a gift from a special place. Never have I been with someone so loving, caring and beautiful inside and out. Without her I don’t think a smile would be possible. If by any reason me and Hannah were to end our relationship than I genuinely would try what I can to keep her as my friend. Hannah is my best friend, my soulmate and I love her so very much.

I am not going to rattle anyone’s cage by mentioning who’s friendship means the most to me, but these people will know who they are.

Don’t ever judge someone without knowing the facts first…To you I might seem lazy but in fact I am too tired to move. I am fighting for my life every single day and I don’t know how else you can tell people of the seriousness.

Another thing people think dialysis and transplants are cures….NEWSFLASH. There is no cure for Kidney Disease.
Dialysis works about what a kidney would function at 30%, so its only just doing its job. Transplants can last anywhere between 0-20+ years, however the most common time that a transplanted kidney functions for is around 12-18 months….

I will be in and out of hospital, on medications, having operations, going through agony physically and mentally for the rest of my life. I wouldn’t wish it on my worst enemy although a day in my shoes might open their eyes a little bit on what us kidney patients deal with on a daily basis.

People who have an amazing life and no worries in the world sometimes neglect their bodies in careless ways, this does actually irritate me. This does not include people who suffer with mental health, as different people have different ways of dealing with this. I am talking about the people who do stuff to fit in, to look good, and for attention…for no reason what so ever, they put their lives and health on the line. People really don’t realise the damage they do to their bodies.
Kidney Patient’s fight to save their remaining organs, for their life and their are so many people who don’t give a thought to what they are doing to their bodies. However, when I was young I did what  wanted to do, I didn’t think about life and how it could get ripped away from me, it never crossed my mind and to be honest within reason it was nice having such a carefree life…Things changed when I got my diagnosis, all the sudden I looked at life completely different to what I ever had before. I realised how precious life is and how quickly it could be snatched away.

I could go on and on about all of this because I am so passionate in the things that I say…

People should really stop judging others, especially when you have no idea of their story and what they are or have been going through.

If you would like to be apart of my CKD support group, then please come and join us at www.facebook.com/groups/CKDSupport