Determination, a Letter and a Step in the Right Direction

After a lot of waiting and a fair amount of stress, I am delighted to tell you that I will be starting my assessment as a donor for Jo on December 11!

The doctors are completely satisfied that my health issues have not, and will not have in the future, any bearing on my kidney function whatsoever.

The relief is huge. Firstly because this gives me, my husband, my children, family and friends less fear about the procedure and any potential dangers to me. It's something which has been a worry for everyone - especially Jo.

Secondly, it's nice to finally have a definitive diagnosis and know that, although I have aches and pains, that's it. There is no more confusion about what I have and that seems to have had a positive impact on all of us. 

Most of all, this means that I am a step further forward to helping my lovely sister.

I found out the good news yesterday and about twenty minutes before I was due to leave to go to Jo's son, Bailey's, 11th birthday party.

As Bailey was celebrating in style with a loud disco, I thought that it would be nice to write a letter to Jo and give it to her at the party so that she could sit and digest the information without me yelling to her over the sounds of 'Gangnam Style' whilst being dived on by dozens of sugar rushing children.

Here's what I wrote to her:
                                                                                                            

21 November 2012

My Darling Sister, Jo, 

I am giving you this letter as it is going to be too noisy at Bailey’s birthday party to be able to tell you this properly. 

Perhaps you will read it as soon as I hand it to you. Perhaps you will wait until you get home. 

Firstly, I want to tell you how very proud I am of what a strong, wonderful and determined woman you are. I have always been proud to call you my sister but, during these last few months, you have astonished me with your strength, will and positive spirit. You are amazing. 

I want you to know that I will always be here for you and that I will fight your corner whenever your strength is running low. I love you. 

I have just spoken to Kay Hamilton, the Transplant Co-ordinator at Southmead, and she has told me that I can now be assessed as your donor.

I have an appointment to see her on December 11^th. 

Yippeeeeeeeeeeeee! 

Love you, love you, love you!

Jude

xxxxxx

I also drew some daft pictures on the bottom of the letter but you don't need to see those!

Jo cried when she read it. I could literally see hope filling her eyes and her heart.

She has had an incredibly tough time recently and it is getting harder and harder to watch her struggling. We are trying not to get our hopes up too high but it feels so good to have a little more hope than we did last week.

Her fistula operation was a lot harder than we thought it'd be. The surgery involved opening her upper left arm and pulling deep veins etc to the surface to form the fistula.

This video shows a fistula operation. Don't look if you're at all squeamish!

As she already has the line in her neck on the right hand side, she has been unable to lay on either side so has not slept comfortably for almost two months. Laying on her back is painful due to her bone grafts so she's really been suffering.

The first attempt at using her fistula resulted in a vessel bursting and a huge bleed which left Jo in a lot of pain and with a lot of extra bruising. This wasn't an easy thing to deal with as, and every dialysis patient will tell you, a working fistula is vital and Jo was worried that her operation would have been for nothing.

Happily, this Tuesday, Jo had her first dialysis through her fistula and it went well.

Apparently, dialysis is more effective via a fistula so hopefully she will feel much better once she is using this regularly.

After a few successful dialysis sessions with it, the horrible neck line will be removed. She is really looking forward to this.

Jo's body's ability to remove excess fluid is slowing down quite quickly now. This means that, as well as getting her blood cleaned by the dialysis machine every other day, she also has to have fluid removed too. Sometimes it's up to about 3 kg of fluid which makes her blood pressure drop and she feels very poorly.

She has also started on some new medication to regulate her parathyroid glands. This is because of a malfunction in the glands which has arisen as a result of her kidney failure.

It's really hard to understand and impossible for me to explain so you might wish to read about it here.

Dialysis has brought her vibrancy back. It's an incredible invention and it's hard to comprehend that the machine is keeping her alive. 

That is a huge and frightening statement and it's weird because Jo is walking around, looks good and is just, well, herself.

You can find out exactly what dialysis involves by clicking here.

Jo's weight had dropped dramatically before she started dialysis. When the kidneys stop working, all of the toxins which would normally pass out of the body remain in the blood stream. This made her feel extremely sick pretty much all of the time.

This link provides information on just how serious kidney disease is.

A new kidney would mean that she would feel 100% better and would no longer have to rely on a machine to keep her living. Her life and the life of her family would become normal and unrestricted by the confines of living with such a life threatening condition.

I am glad that there have been some positive stories relating to living kidney donors recently.

This story was on BBC1 this morning and involves a Richard Bright patient: Have a look here. It's lovely and fills me with hope that Jo will be able to feel well again soon.

As always, I ask you to think about donating a kidney by joining the registry and giving hope to people who need this precious gift more than you will ever know.

The website for the donor registry is here.

Please, please help us to raise awareness of kidney failure and the devastating effect it has on the loves of sufferers and their loved ones.

I'll keep you posted on my assessment. Please keep hoping and thank you again for your continued support.

Jude x

A "Wee" More Hope (Sorry!)

Following their most recent meeting on 24 October 2012, the renal team have agreed that I am not ruled out for donation anymore since receiving my latest results from rheumatology.

As I suffer from fibromyalgia only and no other horrible hidden nasties, it means that there are no contraindications to donating a kidney.

Now, this doesn't mean that I am guaranteed to be able to do it. It's just the beginning of a lot of tests but, at the request of the renal team, I have, over the past week, had 3 urine tests done to check for proteins and other things which I don.t really understand.

All three tests have come back with nothing abnormal detected so I have sent the results over to the renal unit and now have to wait and see what will happen next.

I will update as soon as I know anything.

How many of you have thought about donating a kidney? We would love to hear from people who are on the live organ donor registry.

A Hope For Hope

I had always been extremely strong, fit and healthy. I bounced back from bugs and minor illnesses. I was like that for my entire childhood and early adult life.

I have to admit something; my nickname for Jo is 'The Afterbirth'! 

You know, because I was born fit, well and first and she came out after me and was poorly. Now, anyone who knows Jo and me will know that we have a pretty disgraceful sense of humour and my vile name calling is both given and received with love. Jo, more than anyone, knows this.

If you don't know us personally, I understand if you are shocked, disgusted and appalled at my nickname for my poor sister.

Anyway, karma came and bit me on the bum in the summer of 2003. I contracted a weird virus and it literally put me firmly on my backside. I couldn't move and was pretty much bed bound for several months.

The length of time that I felt unwell for surprised, frustrated and scared me. Why wasn't I bouncing back?

Although, the severity of things decreased, I just couldn't get back to my former, healthy self. Anything strenuous completely wiped me out and I ached all over constantly.

It took several visits to doctors, both NHS and private, before I saw a fantastic professor of rheumatology on the NHS in 2005 who diagnosed me with fibromyalgia.

To be honest, I just accepted it and went on with my life. I was no longer able to exercise but I was okay. I even thought that it might be a sign of me getting a bit older (I was 27).

Things remained as they were until 2008 when I developed other symptoms which put me back down on my backside. I won't bore you with the details but I became so ill that I had to give up my beloved job and spent the next few years trying to adjust to having such huge limitations.

As my newly acquired symptoms were not consistent with fibromyalgia, the doctors were scratching their heads and I ended up seeing specialists in three different areas of medicine where I was tested for a range of extremely scary and downright weird illnesses.

It was at this point that I was diagnosed with undifferentiated connective tissue disease.

This was what was of such a concern to the transplant team when I asked them to consider me as a donor and was, ultimately, the reason for their refusal to allow me to donate my kidney to Jo.

As I have mentioned before, both Jo and I were devastated. However, we tried to accept the decision and I began writing this blog.

I just felt like I needed to do something, anything I could to get my baby sister better.

On the day before the transplant team had their meeting to decide about me donating, my bloods were taken and Jo and I later found out I am an absolutely perfect match.

Imagine that, if you can. 

My weird 'extra' symptoms have been very quiet for some time now and I was aware that my most recent blood work results were about two years old so I spoke to my doctor who agreed that it was worth me seeing the rheumatologist again to see how things were looking.


On 25 September, I went back to rheumatology and had a great appointment with a doctor I hadn't seen before. I had all of the usual bloods and examinations carried out.

On 4 October, I received a letter confirming that all of my bloods are normal and that there is no evidence of any connective tissue disease and vasculitis (that's another weird one).

My diagnosis is simply fibromyalgia (although most people with it will not say it's a simple disease).

Although it's a pain in the neck, and the arse and the back and, well, the everything, I am over the moon.

It means that the transplant team have agreed to reconsider me as a donor for Jo.

The meeting with the experts will take place tomorrow (Wednesday 24 October) and Jo and I would be grateful if you could please send hope and positive wishes our way.

Three potential donors have been tested since we started searching and none of them match.

We are aware that finding a match is like finding the proverbial needle in a haystack which is why tomorrow is such an important day.

I have never wanted anything more in my life. I am carrying the answer to my sister's problems inside me and I just want to help her. My heart breaks for her every day.


I'm crying now so I am going to stop typing. 

I'll update about the outcome of the meeting as soon as we have heard. 

Jude x

Don't forget, you can join the national register for living donors online or by calling 0300 123 23 23.

Remember that Jo's story is just one of over 7,000 in the UK alone. Please consider donating a kidney to someone. You will change their life. 

Winning the Lottery but Losing the Ticket...

When I went for my initial appointment to see if I could donate a kidney to Jo, all of my medical records were looked through and, because I have some health problems, a meeting was scheduled for the next day so that medical experts could assess the risks involved with me donating.

You already know it was decided that I can't donate but, while I was at the unit, I had my blood taken for testing so that it would save another trip.

A few weeks ago, we found out that I am an absolutely perfect match.

What should have been wonderful news devastated both Jo and me. The grief was much worse than finding out that I can't donate and knowing that I am carrying the one thing that can save my sister's life inside me is almost unbearable.

We have cried it all out now and had a good chat but it's put a strain on our hope a little.

I read an article today and the figures are pretty shocking. Around 50,000 people in the UK suffer from kidney failure and, out of those people, 7,000 need a kidney transplant.

Almost 7,000 people have read my blog. If that many people have seen it and showed it to others, imagine what would happen if that many people registered to donate a kidney.

This quest has become more than a search for a kidney for Jo - we want to raise awareness and help all people needing kidney transplants. 

Could you share your spare? Would you?

Visit the NHSBT website and register today or call 0300 123 23 23.

You could be carrying the gift of life for someone.

Please continue to share the blog and follow us on Facebook.

Important Information

Okay, so just under three weeks ago I posted the blog and things have gone a little bit mental...

When I first posted it, I thought that it would be shared between family, friends and acquaintances of mine and Jo's. At no point did I ever imagine that it would get as many views and support as it has to date.

I didn't even consider how many views it would receive. Now, I am checking every few days and thinking "Woah! Thousands and thousands of people all over the planet are reading about my brave little sister and, more than that, they care!" It really is incredibly touching and I want to say "thank you" again and again.

Those two words just don't seem enough though. We say them every single day, don't we? To people in shops for serving us, to friends and family for a cup of tea, to strangers on the telephone and hundreds of other people without even thinking about it.

You know when you get those days and everything just goes wrong? Sometimes, if you're lucky, one person will make a gesture that melts your heart. They lighten the load in such a way that the words "thank you" just don't seem enough. Well, that's exactly how Jo and I are feeling right now.

Nevertheless, THANK YOU! THANK YOU! THANK YOU!

As a direct result of each person who has cared enough to share the blog, join our Facebook page or retweet our pleas on Twitter, we have had hundreds of people coming forward to register as a donor for Jo.

Now, I thought that this was fab but, as we all know, things are never straightforward.

The renal unit is wonderful but has limited time, staff and resources to deal with such an increase on their workload. Please remember that I expected 5-10 potential donors to come from this.

In order to manage the workload, they have asked that, for now, only relatives and friends of Jo are registered. After that, if no donor is found, we can cast the net wider.

To donate a kidney, it is imperative that you are in good health. The main points to consider are:

• Weight. You must be within the normal healthy weight range for your height and build. You cannot be over or underweight. 
• Cancer. You must not have, at any point in your life, suffered from cancer. High risk groups for cancer (eg family history) are also excluded. Check with your doctor about this.
• Mental illness. No past or previous mental illness. There are rigorous psychological tests involved with donating a kidney.
• Any long term health problems, especially heart, kidney or other organ illness.
• Pregnancy. You will not be considered if you have given birth within 12 months or are trying for a baby either.

I know that you may read this and think that it makes perfect sense but the amount of people getting in touch despite suffering from any of the above is astounding. It's lovely to know that so many people care but kidney donation is life saving and not intended to risk life in any way.

After all, my kidney would have been a great match for Jo but, due to my own medical condition, it can't be used. I suffer from an autoimmune disease which affects my connective tissue. It may or may not progress to affect my kidneys. On that basis, I'm out. If you suffer from Lupus, UCTD, MCTD or other similar diseases, you won't get tested. Believe me, I had my medical file looked at by an entire team of experts just so that I could move on from the guilt and what ifs. I cried and begged but that's how it is. The health of a donor is precious and is more of a concern to the transplant team that that of the recipient. The last thing that they want or need is another renal patient down the line and the last thing Jo needs is the burden of the guilt of someone getting ill to give her a kidney.

It also doesn't mean that we want all of the support and encouragement to stop either. Jo is extremely lifted when I tell her about celebrity retweets, how many daily views we've had and all of the wonderful messages of support, stories from people who've had transplants and donated kidneys. 

You can also still help, right now, if you've been touched enough by Jo's story and would like to save the life of someone with kidney failure by sharing your spare. Visit the national register to find out more about altruistic kidney donation. It is the greatest gift you can give to someone.

If sharing your spare is not an option for you, how about some fundraising for Kidney Research UK? 

I will keep you posted.

Again, thank you from the bottom of our hearts. x

The Quest Continues, Hope Builds and Our Gratitude is Unmeasurable

Since posting the blog on Tuesday, I am delighted to be able to say that we have, so far, received around 4,000 views.

Me holding baby Jo

I had a call from the hospital yesterday thanking Jo and me for raising awareness but they very politely asked if we could take down the contact details of the renal unit as they had received more calls and emails than they could handle. That shows exactly just how many people have actually made a decision to something selfless and truly amazing!

I've replaced those details with an email address bigsisjude@gmail.com which I've set up purely to enable any potential donors with blood type A or O to send me their name, address and date of birth.

Every week, I will send the information to the renal unit so that they can process and get in touch with people as soon as they can.

I've also posted links to the National Donor Register and Kidney Research UK  I know nothing about the process for non UK residents but I am sure that a search for your nearest donor register will point you in the right direction.

Jo and I cannot thank each person who has shared the blog, thought about donating and, especially those who are taking steps to make it happen, enough. Not only are we closer to finding a kidney for Jo but, due the power of the Internet and (more than anything else) the compassion of people all over the World, other people whose lives are dominated by the effects of kidney failure will find donors too.

With around 50,000 people in the UK alone on dialysis, the need for kidney donors is overwhelming. What must the global figure be? Massive, is my best estimate.

Tomorrow (10 August 2012), Jo's story will be appearing in the Bristol Evening Post after a lovely interview with Vicki Mathias this afternoon. We also had some photographs taken and Jo looked gorgeous. 

On Friday 17 August, we also made the front page of the Weston Mercury after an interview with Bethan Evans who was really sweet.

This morning, I went through a suitcase of old photographs which used to belong to our grandparents. I was hoping to find a photo of Jo in her now famous Big Boss Trousers. I couldn't find one but I did come across some rather sweet pictures..

Jo in hospital. Christmas Eve 1984

Looking at the photographs made me quite emotional and I found myself wishing that our grandfather, Roy Shipley, (known as "Grancha") was here today.

Jo (left) and me with our Grancha

He passed away in 2006 from a heart attack which was caused by his own renal failure. He'd been on dialysis for 2 years and declined the chance to join the transplant list as he didn't want to deprive a younger person of the chance to receive the gift of a new kidney.

Jo and I have both thought of him a lot lately. It's mainly down to the fact that Jo has dialysis in the same unit as he did at Ambleside unit in Weston General Hospital. In fact, some of the people he dialysed with are still attending. He used to really enjoy going and referred to it as "the office". The staff there are fantastic and look after all of the patients wonderfully. 

It's also very frightening as we know, first hand, just what can happen when your kidneys (or kidney in Jo's case) stop working. 

As before, if you are blood type A or O and would like to be tested as a living kidney donor for Joanne Shipley, please email your name, date of birth, address and blood type to  bigsisjude@gmail.com . Please read my important information post here before emailing.

If your blood type is not A or O but you would still like to change the life of a person with kidney failure, there are thousands of people just like Jo waiting for a donor. Visit  Becoming a Kidney Donor  for more details.

The first stage of testing takes 4 weeks. This determines whether or not a potential donor is a match for the patient by comparing tissue types to see which (if any) match. It isn't a fast procedure by any means but, the sooner people come forward to commence testing, the sooner people like Jo can receive the greatest gift that anyone could ever give them - life.

There are also rigorous psychological tests and other tests to carry out. It can take from 6 -12 months.

If you can't donate for any reason but would like to help in any way you can, please visit Kidney Research UK 

Please keep sharing this blog in every way you can. By doing so, you are making a difference to someone's life.

Thank you again, each and every one of you.

When I was 2 and 1/2, my little sister was born.

She was like a little doll with big blue eyes and blonde hair and she laughed constantly. She still does actually!

As soon as she was born, it was clear that she was to face some huge challenges in her life.

Jo was born with a type of Spina Bifida. At the base of her spine was a huge lump filled with fluid from her spinal cord. The bones were also not formed properly. 

During her first week of life, while the doctors were testing her, it was discovered that she also had something called a Wilm's Tumor on her kidney. The tumor and the kidney were removed when she was just 8 days old and the remaining kidney was preserved but with complications from reflux which resulted in chronic kidney disease and lifetime of painful kidney infections.

She came home from hospital and developed normally, hitting all her milestones and, despite lots of outpatients appointments and extra special care, lived a pretty regular life.

When she was 4, she had to go into hospital as it was time for her to have her lump removed from her back.

Jo (left) Me (right)

The operation was successful but I am not sure of the exact procedure (I was only 6) but I know that she had a bone graft and had to lay in bed for a long time. I remember visiting her at the hospital and watching the wonderful nurses caring for her and comforting her as she cried while they gently turned her in bed.

Her medication was cunningly concealed in strawberry jam and, to this day, she cannot eat the stuff!

Upon her return from hospital, we both decided to celebrate by riding suitcases down the stairs. I'd also make up little stories at night time when she was scared. Yes, I know, very sweet! It also may have had something to do with me feeling rather guilty about telling her that there was a black panther under her bed.

Jo (left) Me (right)

Jo went to mainstream school and was bright, popular and clever. To look at her then and now, you'd never know that she has pretty much suffered pain and discomfort for every day of her life.

4 years ago, Jo had to have surgery on her feet. She had a condition called Claw Feet which arose from the Spina Bifida. Her feet were both basically taken apart and put back together again with pins. Hideous but she just got on with it as she does.

She was a hilarious child and loved nothing more than playing with her pet woodlice. They all had names and she would tenderly pick them up and 'make them walk and dance' while doing their voices.

If anyone ever wanted to make her mad, it was simple: Jo owned a pair of blue and white striped dungarees with a patch on the bib pocket which, in bright red letters, said "BIG BOSS". If anyone dared to declare that they were, in fact, the boss, that little girl would go nuts and yell at the top of her voice "NO! I'M THE BOSS! I'M THE BOSS!" 

Jo (left) Me (right)

As a teenager, she did all of the usual things like stealing all my clothes, make up and whatever else she could lay her hands on. That reminds me...

I'm backtracking to when she was about 12 and had decided to go into my room and take out Boris, my hamster. She dropped him and managed to catch him in her hand. Unfortunately, she must've grabbed him too hard as the poor thing's eyes bulged right out of his head. She later told me that she sat on my bed crying and trying desperately to push his eyes back in with her palm for a good few hours.

I could go on but I'm probably going to be in enough trouble with Big Boss as it is.

Me (left) Big Boss (right)

Jo has 2 sons, Bailey and Harrison. They are 10 and 8 years old and are the most wonderful little boys. Jo adores them as do I and everyone else who meets them. They are both like her in different ways.

Everything has really been pretty normal in Jo's life until about a month ago.

After feeling really grotty (more than usual), Jo ended up in hospital where it was discovered that her kidney was failing and was functioning at less than 8%. Dialysis was started and, as an arm fistula takes from 4-6 weeks to heal, she had to have a tube put into her neck as there was no time to wait, She's having 4 hours of dialysis every other day and has had a fistula placed in her arm now. The doctors think that it might not have taken properly so there's a chance that she will have to have it redone this week. This means that the neck fistula will have to be used for a bit longer. It's pretty gross but she's coping really well. She copes with everything.

The worst part about it for her is the sheer exhaustion which, along with the hours spent in dialysis, is robbing her boys of time with their mother. It's heartbreaking and they are scared and worried and missing their mum.

I really think that she doesn't realise how strong she is. She says it's because she's never known any different but she's brave, have no doubt about that.

Jo needs a kidney transplant and she needs one as soon as possible. I've always thought that I would be able to donate one of mine. In my mind, I was always just carrying a spare for her.

Jo the Mouse

Jo being 'shy'!

We met with Kay Hamilton, the transplant co-ordinator at Southmead Hospital on Tuesday 24 July. She was lovely, honest and very, very kind. A quick glimpse through my medial records made her doubtful about my eligibility and a meeting between various specialists and kidney surgeons was scheduled for the next day. I got a call in the afternoon from Kay as soon as she'd left the meeting with the devastating news that, because of my own health problems, I was not allowed to donate a kidney to my sister after all.

It's not something you can argue with or fight. If there is any risk to the health of a donor, no matter how small, that's it. The health and well being of a donor is more of a concern than the recipient.

Jo's partner, Ben, immediately asked to be tested so he's given his blood. It takes 4 weeks to see how well the tissue matches. It's unlikely that he'll be a match but it's worth a try.

A living donor would be the best source of a kidney for Jo. This is because there is more time to test and find out, in depth, the medical history about a person. It's more rushed with a deceased donor and, obviously, they can't answer many important questions. Transplant from living donors also last longer than those from deceased donors.

This blog is an appeal to anyone out there who may want to do something life saving for another person to get tested as a living kidney donor. Even if you don't match Jo, you will match someone else just like her who desperately needs a new kidney in order to live a normal life. As you will know from above, your health is taken very seriously in order to minimise any potential risks and there are millions of people living long and healthy lives with one kidney.

My beautiful sister

We have learned so much already on this journey. The impact on the life of a renal patient, their family and friends is huge. Even Jo's diet is restricted. She's too young, vibrant and needed for this and the life of Jo, her children, partner, friends and family will remain as it is until she receives her new kidney.

If you are blood type A or O and would like to be tested as a living kidney donor for Joanne Shipley, please email your name, date of birth, address and blood type to  bigsisjude@gmail.com I will then send a list of potential donors to the transplant team once a week. Your information will not be used for any other purpose whatsoever. The team will  log your details and get in touch with you to arrange testing. It may take a few weeks as they are extremely busy doing wonderful work for renal patients just like Jo.

Please read about important information here before emailing

We are on Facebook at Jo's Kidney Quest Facebook page and you can also follow Jude and Jo on Twitter. When tweeting, please use hashtag #joskidneyquest

***UPDATE***

08/08/12 - I've had to remove the telephone number and email address from the renal unit as they have been inundated with calls and emails. Amazing, but it's taken over everything else they need to do today!

Thank you for your wonderful support!

Whilst researching for information to give people about living kidney donation, I came across one woman's real life story which describes each step of the procedure in detail from her own point of view. Read about Diane Franks and the story of her amazing gift of life to someone.