Radiation and Dancing

Well, since my last post, a lot has happened.

Jo has been really suffering. Despite the dialysis, she is still pretty sick a lot of the time. Her life is dominated by kidney failure and she has no freedom or rest from the disease, yet she still doesn't complain. I am constantly amazed at how dignified and strong she is. I don't know how she does it but, with the love and support of Ben and their children, she just gets on with it every day.

On a more positive note, I've now been through all of the testing to ensure that my kidneys are perfect and also to rule out any health problems which could either now or in the future have an impact on my health.

The good news is, so far, so good. 

I had the final physical testing yesterday which was the most invasive so far.

The rate which my kidneys filter toxins from my body was tested. I was injected with a radioactive substance (isotope) and had blood taken at regular intervals throughout a five hour period.

It wasn't too bad at all. The isotope felt quite stingy as it went in and I'm sure that my mouth felt a bit woolly for a while afterwards but that was it.

The blood samples were taken in the same way as any other. I'm okay with needles but I just don't like seeing the needle piercing the skin so I always look away.

It got a bit sore towards the end of the testing but that's to be expected and it feels fine today. 

After the final blood sample had been taken, Pete and I went for lunch at the hospital restaurant before heading over to have my CT angiogram done.

This one was pretty weird. I had to wear a robe and entered the room where I had to lay flat on my back on a long table with a scanner at the foot of it.

It reminded me of an alien abduction dream I had a few years ago but I can't go over that. Not now!

A cannula was placed into my arm. The lady tried to put it in the arm which hadn't been too badly battered but, in the end, it had to go into my abused left arm. Again, it was a bit sore but nothing compared to what Jo has endured so far. I really can't moan.

I was then given instructions to breathe in and hold it (which was hard work as I have gained some weight over Christmas) as the scanner moved over my body.

My arms were held above my head and I was told that a dye would be injected into the cannula and into my body so that the parts being looked at would be clear on the images.

I braced myself and it was the most bizarre sensation; a bit like boiling hot water filling my body head to toe from the inside. I can't say that I enjoyed it but it was certainly an experience!

The purpose of this test was to look at my kidneys in detail and, also, the arteries and vessels. This is really important and can affect the surgeon's decision about whether or not the operation can go ahead. 

After the scanning was done, I had to wait for fifteen minutes for the dye to flow into my bladder so that an x-ray could be taken. I was more concerned about needing to pee at this point.

Me shortly before "the dance"!

As soon as the radiologist told me not to go to the toilet, my bladder started screaming at me and I began to do "the dance". You know the one. One leg clamped over the other and a funky little bounce. 

I panted dramatically through the x-ray which was very quick and went to the loo immediately.

I have to admit, I was hoping that the morning's radioactive injection would give me something interesting in the toilet but it was all normal. I know that a few of our readers were also curious but, nope, no radioactive glowing poo or wee, I'm afraid. Sorry guys!

That was it. 

So far, I have had:

• Loads of appointments from July 2012 to October 2012 to rule out any connective tissue disease due to my mixed symptoms from around 2003/4. I have osteoarthritis (OA) and fibromyalgia (FM) but had some unexplained symptoms along the way which were mistakenly grouped with my OA and FM. This caused years of me not knowing what was wrong with me, confusion for doctors and, worst of all, a delay in me being assessed as a donor for Jo. Anyway, the good news is that none of my conditions will have any impact on kidney related issues and it just goes to show how careful the transplant team are about the health of any potential donor. It's certainly very reassuring for my husband and children. 
• General health assessment
• Blood tests for HIV, Hepatitis B&C, kidney function, liver function, possible virus exposures and anaemia
• Urine dipstick 
• ECG
• Blood pressure
• Chest x-ray
• Renal ultrasound
• Consultation and examination with nephrologist (kidney doctor)
• Isotope GFR
• CT angiogram

We will know the results of yesterday's tests in about a week's time. If all is well, I will receive an appointment with the surgeon. 

After that, Jo and I will meet with the Human Tissue Authority (HTA) to discuss the procedure and legal implications in detail. They need to be satisfied that a donor is not being paid or pressured in any way. 

Once the HTA are happy, we will have a final cross match. If, for example, Jo had needed a blood transfusion between the time of our first cross match and this date, she could have developed antibodies against my tissue. Thankfully, we are a perfect match and Jo has not had any blood transfusions.

Once the final cross match has been done, we will be preparing for the surgery!

It still doesn't feel real. We have been through so many ups and downs since last summer.

We went from thinking that I would be able to donate my kidney pretty much straight away to the devastating news that my application had been refused. That was when I started blogging. I just felt like I had to do something and, if I couldn't donate, I was going to find someone who could.

Lots of people have said some wonderful things about how brave I must be to consider donating a kidney. To be honest, and I really appreciate the sentiment, bravery doesn't come into a decision like this.

Bravery is facing a fear and conquering it. The thought of Jo not getting a kidney is far more terrifying than any tests or surgery and I could never face that.

All of my tests seem like they have taken forever and I am so glad that I had the strength to go back to the doctors and demand some answers. I'd still be in limbo otherwise and I can't bear to even think of what Jo would be feeling right now.

On the other hand, I don't think that I would have started this blog if I'd been given the go ahead straight away and I'm really glad that awareness is being raised about kidney failure and the need for living donors. Not only that but I want the world to know how brave my beautiful sister is.

I will update again soon but, for now, we finally have hope and that alone feels pretty wonderful. 

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.