What a Difference a Kidney Makes!

Our surgery date was 17 April and two weeks have passed now so I thought it would be a good time to update the blog.

Jo and I were admitted to hospital on 16 April and we couldn’t really believe that everything we had been fighting for was actually about to happen.

We met with some photographers from the local press outside the renal unit and had some photos taken. It is a bit of a blur as the reality was starting to kick in at this point. The photos were actually quite funny as my smile had become a little bit more of a grimace!

We then went inside and had our bloods, weight and an ECG recorded and spent a bit of time speaking with one of the transplant co-ordinators, Tracey, who put us at ease and made sure that we knew that she was there to answer any questions before explaining exactly what would be happening the following day.

We also met with a member of the anesthetist team who explained what would be happening to each of us before, during and after our respective procedures. He was quite young and rather handsome and, true to form, I was a little bit cheeky with him and Jo got embarrassed!

We had time to go for a coffee before our beds were ready so I went with my husband, Pete, and my eldest son, Jake, to kill a bit of time. I think I was in a bit of a daze at this point.

We were admitted onto the ward at around 4pm and Pete, Jake and Jo’s fiancé, Ben, accompanied us both to the ward where we all chatted and took in the surroundings as well as the enormity of what was about to happen.

I could see that Pete was getting emotional so we said our goodbyes and I gave Jake a big hug and off they went. My youngest son, Brandon, had been at school all day and he really dislikes hospitals so we had our hugs in the morning and were in touch by text message.

I felt very strongly about making sure that Pete and the boys were as at ease as they could possibly be throughout this experience. I understood that, although they love and care for Jo and wanted her to be well, they love me and were worried about me putting myself through surgery and the risk and pain which accompanies it. Their support was a lot to ask for but they gave it unconditionally after being reassured that I was healthy and strong enough to withstand the operation.

Knowing that they were at home and supporting each other meant that I could focus on what was happening to Jo and me.

Ben went a little later after lots of hugs and kisses from Jo. He was a wreck inside but he didn’t  show it. Jo’s boys and Ben’s daughter were being looked after and had been at school. Jo has been brilliant at just keeping things ‘normal’ throughout everything and, as a result, the children have been able to cope exceptionally well with minimum stress.

Jo and I were sent T-Shirts and badges by iLiveiGive, an organisation dedicated to raising awareness of the desperate need for organ donors  which we wore with pride.

We both had to go for a chest x-ray and, once back on the ward, reality started to set in. My drip was attached and I was reminded that I was to have no food or drinks after midnight. The drip was to give me fluids and keep my kidney well hydrated. I was told that the fluid would cause me to be rather puffy after surgery.

One thing that really stands out in both of our memories is that we were asked by everyone whether we had any questions. I can honestly say that I have never felt so reassured and safe during any medical procedure. We had no questions because everything had been explained to us in great detail. Knowing exactly what would happen was very comforting for both of us.

Jo kept getting butterflies in her stomach and I was surprisingly calm. I was focused on trying to keep as level headed as possible as I knew that Jo was very nervous. After all, she was desperately ill and, despite the huge impact dialysis had on her life, it was keeping her alive and she knew where she stood. This was a risk and a very frightening one at that.

We have always been extremely giggly together. Anything can set us off so we laughed a lot throughout the evening in between seeing our surgeons, speaking with doctors and talking to our families on the phone.

Jo was quite emotional later in the evening and was completely overwhelmed by what we were about to go through. We knew that I would be going to theatre at about 8:30 am and that she would then have an agonising wait to be called to theatre a few hours later whilst worrying about whether I was ok. I didn’t envy her at all!

My bed was on a different bay to Jo which meant that we were separated for the night. I was in the exact spot where our grandfather, Roy, had been seven years earlier when he passed away. I spoke to him in my head. I think lots of people do that when they need to feel close to a loved one who is no longer around.

It was the first peaceful night I’d had for months as I knew that the following morning was going to give Jo a chance of getting her life back. She was going to be safe and my mind finally stopped reminding me of what could happen to her at any time. The fear of losing her had subsided and I slept solidly and woke just before 6am to have a shower and get into my hospital gown. I noticed that I’d woken up with a spot on the tip of my nose.

After that, Jo and I spent a little time together. She was crying and telling me how much she loved me. I made daft jokes and did my best to reassure her that we were going to be okay and that her life would be better after today. I’m not sure if she believed me but I knew it was true.

Jo hadn’t slept very well and I can’t imagine what she must’ve been going through at this point. She had been allowed breakfast though so I was a little put out!

At about ten past eight, we were told that I would be taken to theatre soon. At this point, Jo was almost hysterical, bless her! She was in tears and we had a lovely hug and I told her I loved her and that I’d see her later and not to worry. My heart had started pounding now and it took every ounce of strength not to burst into tears.

Tracey came along with a porter and I was wheeled in my bed out of the ward and into the lift where I exhaled and admitted to Tracey that I was scared. I just couldn’t have told Jo as I knew that it would have made things even harder for her.

Tracey was amazing. Both she and Kay had been through the last ten months of testing and tears with me and their support was priceless.

At that moment, Tracey was the only person who really knew just what I had gone through to get to that point in the lift and she held my hand the whole time and didn’t leave my side.

Transplant co-ordinators are angels. There is no doubt about that. Both Tracey and Kay had been amazing from day one and were never anything other than honest and caring throughout the whole process. Without them, I wouldn’t have had the strength to keep fighting. I’m sure of that.

Once I got into the little room next to the operating theatre, the anaesthetist explained what was happening and I can remember asking Tracey to tell Jo I loved her and would see her later on. I was crying a little bit and she stroked my arm as I drifted off to sleep.

I gave Jo a notepad and pen and had asked her to record any thoughts and feelings she had during the experience. Here is a glimpse of Jo’s mind before surgery:

16 April – 5:15pmArrived at hospital at 2pm. Finally got one bed and we are just chilling. I feel relaxed and not concerned at all.
17 April
8am
Oh, how things change! Jude has gone for surgery. Jude is great and I am a bloody mess! So worried about her, me, and everything! I didn’t sleep well but I get to rest most of the day so I can’t complain. I love my sister.
9amI can’t stop crying! Ben is on his way, thank God. I can’t stand this. Everything we’ve been working towards happens today. I don’t think I can get my head around this at the moment.

I can’t remember waking up but I recall being back on the ward and seeing Ben and his mum, Sue. I felt really hungry and desperate for a coffee so Ben went and got me a nice cappuccino and a chocolate bar which I devoured in seconds much to the astonishment and amusement of the nurses!

Me shortly after surgery!

I had a button which gave me a dose of morphine when the pain was bad and I took full advantage of this and Ben, Sue and I waited for Jo to come back.

Pete arrived and things are a little blurry but he did take a rather, ahem, lovely photo of me!

The wait for Jo seemed to take forever and when she finally appeared, I let out a cheer and was desperate to know how she was and whether the kidney had been successfully transplanted.

We were told that, within two minutes of being ‘plumbed in’, the kidney began to produce urine. We were delighted!

Both of us had been fitted with catheters for surgery and I quickly became obsessed with Jo’s urine bag! It really was amazing to see it filling up with ‘liquid gold’ as I called it! I know it’s wee and it’s something that we all produce but wee keeps you alive. It takes the toxins out of your body. People on dialysis don’t wee much or even at all so being able to see the results of the transplant in this way was amazing.

Also, it was confirmation that I was now going to be able to take the pee out of my sister for a very long time! She hates that joke, by the way!

We were also both in awe of our huge tummies which were bloated from the surgery and we were getting our heads around the fact that we had done it.

Me, looking puffy, in the morning after the transplant

The night came and we didn’t sleep too well as we were both uncomfortable and were checked through the night by the lovely nurses.

The next morning is a little clearer in my mind and I remember the pain hitting me pretty hard and being quite shocked at the intensity of it. More than that, I felt honoured to be a part of something so wonderful, incredibly proud of what we had done and so very thankful that Jo was going to be alright.

Jo, looking gorgeous, in the morning after the transplant

My surgeon came to see how I was doing and advised me that I would need to get up and sit in my chair. He is a fantastic and experienced surgeon and, every time I’d met him before surgery, he was extremely open and honest about the procedure and what to expect. I couldn’t have wished for better hands to be in.

Jo also found her surgeon to be extremely ‘human’. Little things can make a huge difference when your life is literally in someone’s hands.

Recovering together was an experience which we will both treasure forever. We laughed, cried, moaned and talked non-stop. Jo was extremely amused at my ‘morphine bubble’ as she put it. I was nodding off with sandwiches in my mouth, mid conversation, while texting and even halfway through sipping drinks!

While I was high on morphine, Jo seemed to become more and more animated. Despite the intense pain, the kidney was doing its job and her energy and sparkle were returning. This was fascinating to watch and, each day, she seemed to blossom more.

We made our little area of the ward into a den. We loved dens when we were kids and this one was fantastic. Our curtains were pulled around both beds so that we had our own space to share. The nurses were great at making the den for us each night.

I hadn’t realised just how much I laugh until after the surgery. Laughing hurts and it’s not helpful when you are with the person who makes you laugh more than anyone else.

Each day in hospital got easier and I was discharged on 21 April. I was sad to leave Jo but I knew she wouldn’t be too far behind me. Sure enough, she was discharged the next day because her results were so outstanding.

Jo is now being closely monitored and has to attend hospital appointments several times a week to make sure that things are as they should be. She will also need to take anti-rejection medication for the rest of her life in order to stop her body from rejecting the kidney. This lowers the immune system so she will have to be extra careful in avoiding bugs.

The kidney has been placed in her lower right tummy and will settle in over time. Jo feels extremely protective of her stomach and is terrified of being bumped. It can be felt if you put your hand on her tummy and looks like a little bulge at the moment. It’s crazy to think that it was in my body for my entire life and now it’s in my sister.

The other amazing part of this experience has been learning of Jo’s kidney function from her blood tests. Her failed kidney was working at 7% on the morning of surgery. As I type this, two weeks later, it is at 84. That’s as good as my kidney function before surgery with two perfect kidneys and is better than we had ever imagined it would be.

She looks more vibrant than I have seen her in years and her complexion is healthy and glowing. She is able to enjoy food and can have a drink whenever she is thirsty now. Even ten years ago, her kidney function was 35 so she actually can’t remember ever feeling so good.

She said today that she just wants to get on with living and doing things and that the recovery from the surgery is frustrating her. I, on the other hand, am enjoying the rest. I think that says it all really!