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Showing posts with label living kidney donor. Show all posts
Showing posts with label living kidney donor. Show all posts

Thursday, 13 March 2014

World Kidney Day!




World Kidney Day (WKD) is an annual global awareness and education event, held on 13th March every year. The event provides the perfect opportunity to get out in the community and share the WKD message with friends, family and people you meet. It is also a chance to raise awareness of the importance to life of your kidneys, how you can look after yourself and the risk factors for kidney disease - you might just save a life!



Considering I am going through Chronic Kidney Disease myself, I feel quite strongly about this. I've had kidney problems since birth, therefore I have been introduced to the world of kidneys since a very young age. However, some people I know have absolutely no idea what the kidneys even do or how important they are. I don't blame them of course, why would they? However I definitely think more awareness must be made regarding kidneys.

There is a lot of spotlight held on certain illnesses within the UK, but everyone seems to forget about the not so common illnesses out there. Don't get me wrong there is a lot I need to learn and be educated on when it comes to different illnesses and conditions out there, however this is one that is very close to home for me.


There are currently 5,680 people in the UK waiting for a kidney transplant. I am one of those statistics. Last year, 335 people in the UK died whilst waiting for a kidney transplant. That's nearly one person every day. I do not want to be one of those statistics.

There are at least 1 million people within the UK with moderate to severe kidney disease that have not yet been identified. 20% of people with kidney failure are only referred to a kidney specialist when their kidneys have already completely failed and their outcome is poor.

There are roughly 26,000 people in the UK receiving dialysis treatment for kidney failure and that number is rising every year.

I think these facts suck and they need to change. Whilst technology is constantly moving forward, those affected by kidney failure are generally having a very shit time. I don't wish kidney failure on my worse enemy.



What can you do to help yourself and your kidneys?

· Keep the Pressure Down – High blood pressure accelerates kidney damage. To protect yourself from kidney disease you should monitor your blood pressure regularly and maintain a diet low in salt and saturated fats.

· Keep fit and active - This helps reduce your blood pressure and therefore reduces the risk of kidney disease.

· Don’t smoke - Cigarette smoking slows blood flow to the kidneys, decreasing their ability to function properly. Quit smoking to slow the progression of kidney disease.

· Eat healthily and keep your weight in check - This can help prevent diabetes, heart disease and other conditions associated with kidney disease.

· Know your kidney function - If anyone in your family has suffered from kidney disease, if you are diabetic or if you are of Asian or African ancestry, it is particularly important to get your kidney function checked by your GP. In the western world, 30-40% of patients with kidney failure have Type 2 diabetes.

Kidney failure and kidney disease does not always show symptoms, therefore it's up to you to get them checked and keep them healthy.



What can I do to help?

Have you ever considered joining the organ donor register? I know loads of people who would do it, but lead such busy lives that they have just not got round to doing it yet. It takes 2 minutes to join and you can do so here!

Obviously we all know that signing the organ donor register means you give permission to donate your organs when you die, however in this day and age; technology and doctors have become so advanced that people are living longer and doctors are able to revive more and more patients throughout the UK. Whilst I don't wish anyone to die of course, it does mean that the number of organ donors is decreasing. The waiting list at the moment for a kidney donor is 3 - 4 years on average.

However what a lot of people don't realise is that you can now donate a kidney whilst still alive and go on to live a happy, long, healthy life afterwards. This is called Living Kidney Donor. You can do this for a friend or family member or you can even choose to donate your kidney to a complete stranger. This is called an Altruistic Kidney Donor. There is more information on the Organ Donor website.



I hope this post helps raise awareness, answer some questions for you and maybe even inspire you to do something amazing!

Thursday, 2 January 2014

Back to square one on the search for a kidney...

I know it's been a while since I updated, however things have been up in the air and very hectic on my end, therefore I've not found the energy to update. However I will definitely be getting back on it...

Ideally I want to carry on with the journey from where I left off... However quite a lot has happened and I feel the need to update about it so be prepared, this is going to be a long one.

Once I had recovered from the surgery of having the peritoneal dialysis catheter fitted I finally got a solution to my problem. In the UK  there are two main providers of peritoneal dialysis machines. Baxter and Fresenius. Baxter is the main one, used by most over the UK, however Fresenius has started making it's appearance and some patients reported that the Fresenius peritoneal dialysis machine hurts less than the Baxter one. So my renal team arranged me for to receive a new delivery of a new machine and all new dialysis supplies... So that first delivery I was given... Went completely to waste as they're not allowed to re-use any dialysis products which have been prescribed to someone else, even if they have been untouched and are still in their original sterile packaging. Crazy if you ask me and a total waste of resources.

I finally trained on Fresenius and it was a success! Still slight discomfort when the machine is draining fluid out but much less painful than the Baxter machine. I figured a few of you don't even know the process of what happens during peritoneal dialysis so here's a useful and informative link: Peritoneal Dialysis

Adjusting to doing dialysis every night wasn't so much of a problem as I have a very supportive boyfriend and family around me helping whenever possible... More than anything the whole thing is a massive pain in the arse. Having to set it all up, keep everything sterile, 2 minute handwashes, alcogel a-go-go! Sometimes you just wanna get your pyjamas on and jump straight into bed, however my bedtime routine had turned into this. It's not so bad though, usually my boyfriend does the 5 litre dialysis bags and then I sort out the machine and connect up. We seem to have a system going and it works. :)

Some of you may already know... My mum was going through testing to see if she could be a living donor in order to donate one of her kidneys to me and it was a rather exciting time for us all. She passed all the tests which took about 6 months to complete. However a few weeks before her final test my Mum suffered a heart attack and had to have anglioplasty performed to open up one of the blocked valves in her heart.

Hearing this news was a massive shock to me and I am glad she got to the hospital in time as I don't know what I would have done if the outcome was any different. My mum is recovering well thankfully... However because of her heart attack it means she is now not eligible to be my living kidney donor. Even thopugh she was a 100% match.

Gutted doesn't even cut it. :(

The problem really is that I had my hopes up on her being a donor and they were estimating "around January, after the New Year" in doing the transplant if all went well... Well it's 2nd January now and I'm definitely not getting a kidney transplant anytime soon. I guess it's not the end of the world but I really don't want to be on dialysis for a long time. Whilst being on dialysis has given me a little bit of life and energy, it's still not the ideal life I want to be leading. I feel like my life is on hold a little bit until I get a kidney transplant sorted.

So, I'm pretty much back to square one in looking for a kidney donor and I'm pretty desperate. One of the renal consultants told me to get appealing and asking around... But seriously, who goes up to someone and asks seriously "do you want to give me the gift of life and be my kidney donor?" - what a way to put someone on the spot and test the friendship?! So I decided to make a facebook group. The group was more or less to just get people aware that I'm looking for a kidney and if someone thinks they might wanna go ahead and get tests done that they can contact me via facebook and I can pass the transplant co-ordinator details on and then tests can be arranged. The facebook group is: Living Kidney Donor

Testing takes about 5-6 months to complete under the NHS so I'm not going to hear anything for a while, I guess it's just a waiting game for me to see if anyone out there goes through with the testing. I really hope they do go through with it though. I can give the number out but it's up to them to call it up and go through with all the tests and appointments.

I really need to up my game if I'm to find a kidney soon. So this year I am going to focus my efforts on raising awareness about being a living donor. There is so much potential out there if the public actually knew what it was all about and what it all involves, but because it's not in the limelight i don't think it even crosses people's minds. I mean, I wouldn't even consider it if I didn't have the problem myself. 

So if anyone has any suggestions as to how I can up my game in search of a living kidney donor then your suggestions are welcome and most appreciated.