Out the Other Side

Just over two months since my kidney donation surgery and the healing process is going well.
I still have some slight tenderness around my navel but all things considered I'm doing well.

I returned to work last week, probably a little earlier than I should but I feel well enough in myself, as long as I don't push myself too hard and don't do anything stupid, I should be fine.

The recovery process hasn't been easy. I've struggled to get to sleep some nights because I wasn't able to get comfortable because of my wounds. The lack of mobility was difficult, my mind wanted to get up and go out and see friends or just grab a coffee from my favourite coffee shop but your body just wont let you. A once 25 minute walk took me an hour!! So yeah, it was tough and at times really depressing, I'm sure I drove my housemates nuts. There are only so many hours of movies, TV box sets and Xbox you can endure before you start to go slightly crazy.

LADIES, let me warn you, the first period you have after surgery, is very painful. I'm assuming this is because your insides are still quite swollen and bruised. Very strong pain killers were required!!

I finally feel like I'm getting back to normal. I've been out a few times for drinks with friends, even got drunk a couple times. I have noticed that when drinking alcohol I need to visit the toilet a lot more frequently!! However, I also don't seem to have experienced a hangover yet either and I can assure you that a couple of these drinking sessions most certainly should have made me feel very sorry for myself the next day.

So all in all, 2 months done the line, I'm back at work, having fun with my friends and generally just getting on with it. But the real feel good factor for me, is seeing my brother!!

The Emotional Gauntlet

WARNING: This post maybe tough for some people to read but i don't feel I'd be doing this blog justice, if I didn't talk about this.

The decision to donate was always an emotional one for me, after all my big brother was ill. There was never a question in my mind that this was the right thing to do. The question was, was I strong enough to go through it?

There were definitely times when i had a wobble and didn't think i could. Mainly because i didn't think I'd be able to cope with the ramifications if it didn't work or worse yet my brother didn't make it. These thoughts were at times too much bear and would often reduce me to tears. That utter debilitating fear of failure and at a really high price!! I was seeing the renal counsellor and this was a topic that we discussed at length. I tried desperately to wrap my head around the concept that it wouldn't be me or my kidney that would fail, it could be any number of things, the surgeon mucks it up, my brothers ill body rejects my kidney, etc, etc. It took a long time for me to come round to this way of thinking, but it still felt wrong to place blame at anyone elses door other than my own. Thankfully, the closer we got to K-day the less this bothered me. Thoughts of surgery now consumed my mind.

I was really scared, after all this wasn't a mere tonsillectomy, this was major surgery. This was scary stuff. I was having surgery that I didn't need to hopefully give my brother and his family another bite of the cherry. It was a massive cause of stress for me and I also knew my brother was scared. So I felt it important to show him I was strong, positive and not scared. He needed other peoples strength and positivity to draw on to help bolster his own. That was my thought anyway. His wife, myself and my brother, were this little threesome, holding each other up and keeping each other strong and positive. Doing our best to keep the whole thing as lighthearted as was possible. My brother is a very lucky man to have such an amazing woman at his side. I am in awe of her strength and positivity. A truly wonderful human being.

My big brother is eleven years older than me. I've always been the annoying baby sister that got on his nerves when he was trying to read or do his homework, or steal his CDs. He left the family home quite young to join the Navy, so missed a lot of my growing up and i guess we grew apart and weren't hugely close. But i always looked up to him and my other brother. They were and still are my heroes!! This whole process has brought he and I much closer together and it's wonderful to feel that kind of sibling closeness. We text almost every day and the banter is better than ever!! To see the sparkle in his eyes and the return of healthy colour to his face, warms my heart. I can't describe the feeling.

I did a lot of reading before the procedure, for the blog and for my own interest. I came across an article about donor post transplant depression. It was very interesting but I couldn't understand why someone would feel depressed about having just done the most amazing thing a person can do. I now understand it a little better. The best way i can describe it, is Christmas. There is this huge build up to this one special day, the day arrives it's wonderful. Everyone has fun opening gifts, stuffing their faces and getting a tad merry. Then it's over as soon as it begun and all you are left with is stuff and left over food. 
After the transplant, all the once split focus switches solely to the recipient and as well it should. They are the sick one after all. The donor is left feeling like they have been sidelined or forgotten about. It sounds like an attention thing, but it really isn't. The donor just had major surgery too and while you are praised for your bravery and thanked, people forget to ask how you are?  It's difficult to explain. For me, it started when my brother showed signs of rejection, I wept in my hospital bed, I was petrified but I couldn't show him that. I was so angry that this was happening, I was scared that all this had been for nothing. And i was pissed off that I felt i had nobody that would understand to confide in. Then as my visitors thinned and discharge day came round, I was happy to go home, but the feelings of being forgotten about didn't stop. Now, don't get me wrong, my brother and his wife had been amazing and I knew they were there for me but they had their own stuff going on. My folks were caring and considerate and I have a great network of friends to support me. I don't know what my expectations were, it certainly wasn't statues and sky writing, i just didn't expect so little. 

Now I'm sure this makes me sound like an attention hungry, self centered person. That is not the case. I guess when people don't see you as being sick they don't think you are. I suppose you feel a bit lost afterwards, because your part is over now and you don't quite know what your role is now or even if you have one. That's the best way I can think to describe it. i do know that whenever I see my brother all those feelings just melt away, because I look at him and how well he is doing and can't help but smile and fill up with pride for my brother, my kidney and I. The End.

My Brothers side

My brother was admitted to Guys Hospital on the 11th (the day before surgery). He had to have a line fitted in his neck, which he later discovered, went down to his heart!! This line would be used for the Plasma exchange treatment. What the hell  is plasma exchange, I hear you cry? well, my friends let me tell you a story....

Your blood is made up of red and white cells and platelets (don't ask me what they are) these are are all carried around in this fluid called plasma. The plasma can be separated from your blood, removed and replaced. This is called Plasma exchange. Your plasma can only be replaced with either fresh donor plasma or human albumin solution, which is the liquid part of the plasma obtained by processing the fresh plasma.

The function of plasma is to carry blood cells, (the red & white cells and platelets) and various antibodies, proteins etc, etc around your body. Plasma exchange is usually carried out when there is a problem caused by abnormal anti bodies or proteins in your plasma. Which was kind of the case here, as we were having an ABO incompatible transplant. Meaning my brother and I aren't a blood match, so they needed to bring his anti body count down to make the incompatible transplant more viable. As antibodies, which normally help to protect you from infection, can and will attack your own or foreign cells. Which is obviously a bad thing.



So they hooked my brother up to this big machine called a Blood Cell Separator. This machine separates the blood into it's various parts. It sperarates and removes the plasma portion of your blood and gives you back replacement plasma. The remaining parts of your blood including the red and white cells are returned to you during the treatment. This process takes 2-3  hours!!

So, the next day, K-day! The doctors took blood samples from my brother, to make sure the plasma exchnage had worked as intended. It hadn't, it messed up his levels, so he then had to have a blood transfusion via a drip, to try and even things out. This made his potassium levels too high, which is bad. So then he had to go on Dialysis for 2 hours to bring the potassium down. This was what caused the hold up in the surgery time.

My brother went down to surgery about an hour after me, i think. The timings of everything are still bit of an unknown, as it was all too emotional to be watching the clock. He had the same procedure as me pretty much, in the anesthesia room. His surgeon Nazim Mamode, came to see him just before, to make sure my brother was ok. My brother said, "I'm good, just dont kill me!"

As mentioned in my previous blog, My brother was back on the ward, after a few more tests at about. 12:45am.
My brother had the same things as me, he had a catheter in his winky (hehe), a wound drain, a massive bag of IV fluid and an IV drug clicker thingy, although he had Fentanyl in his, not morphine, as morphine is bad for renal patients. If you at all squemish, don't look at the next pic.... Look at this for a wound.

It's important to keep the new kidney well hydrated so my brother was tasked with the job of drinking 3 litres of fluid per day!! Way more than the recommended daily allowance of 8 glasses!! By the third day, he was starting to show some mild symptoms of rejection. His creatinine had gone up from 200 post transplant to 235.
Creatinine, is a natural waste product from the kidney, it's an indicator of how well the kidney is functioning. In a healthy person, your creatinine level in anything between 60 and 110. So, pre-transplant he was at something like 400!! The Doctors began a process of elimination, for the rise in his creatiinine level. The first was to check how hydrated he was as dehydration can cause a rise in the levels, this was fine. Next up was a scan, to see if the cause could be surgical. Had the kidney been plumbed in correctly was there a surgical issue. Nope, that was fine too. They tested his levels again and they had gone up to 253. Not a good sign at all. I was now getting very edgy! The one aspect of this whole thing that I had been dreading, looked like it could be happening. I'm not gonna lie, it was tough for me to stay positive.
The next step was a kidney biopsy! Where they basically fired a gun with a needle on it, directly into his wound and into MY kidney, to take a small piece of the tissue. They did this 6 times!! He then had to lie flat and very still for about 6 hours, to avoid rupturing his new kidney.

The biopsy revealed that there was some rejection happening, so he was put on a 3 day course of strong steroids and given a lot of fluid. 5 litres a day to be exact. His weight went up from 93.9kg to over 102kgs in just 3 days!!

He was finally discharged on the 22nd Feb. Where it would seem he has gone from strength to strength. He was supposed to visit Guy's 3 times a week for the next 2 months, but they are so happy with his progress, he only has to go twice a week now. His creatinine level is 151 and the kidney, Lucy, that I gave him, was functioning at 46% in my body and it is functioning at 44% in him!! Good ole Lucy!! I knew I had good organs!!

This isn't the end of the tale though, he still has a way to go, the next 2 months are important. However, if he keeps going the way he is, everything should be just fine.

He just sent me a picture of his wound as it is now, some 3+ weeks later........

My Road to Recovery

The day after surgery, I spent the morning getting fully acquainted with my patient controlled Morphine. I don't recall being in  a great deal of pain, but I assume that is thanks to my buddy Morphine. I remember I was feeling very woozy and very sore.

 The absolute best part of this first morning was being brought a large cup of tea and a couple of custard creams! It was the best cuppa I have ever had, swiftly followed by a slice of toast and my first round of meds.

Which included, 2 x 500mg Paracetamol, 1 x 500mg Ibuprofen, 2 x anti-nausea tablets, 2 x laxative, 1 x Omeprasol (cos ibuprofen can be harsh on the stomach) Plus, I could still click a button to get a hit of Morphine.

I also had to have a blood thinning injection every morning, which was THE most painful jab I have ever had!





Sleeping for any length of time was still difficult as the nurses wake you every hour for the first 24 - 48 hours to take your blood pressure and temperature, also known as "obs".

I have never had a catheter before and it wasn't all that bad really, a very strange experience though. As you still get the urge to pass water but you don't need to do anything to help it along. Very peculiar. The lazy girl in me could get quite used to never having to get out of bed to pee!!

My bag of wee wee!! 

I was able to return to eating and drinking as normal pretty much straight away and just after lunch on the first day, the nurses wanted me to get out of bed, so that they could change my bedding. I double clicked my morphine button and the nurses eased me up into a sitting position - this hurt like hell!!! They helped me into a chair. It actually felt quite nice to sit up properly. I was advised to take some deep breathes whilst seated. As I was taking the breaths, I noticed that my chest felt quite weezy, which caused me to cough. Which also hurt like hell, I was given a rolled up towel to support my abdomen wound when I coughed. 

This weeziness is completely normal after having had an anesthetic and they need you to breath deeply to help clear your lungs to minimise the risk of getting a chest infection. I had stopped smoking 6 weeks prior to surgery as advised and I am so glad i did, as I think this would have been far more uncomfortable if I hadn't.

I asked to see my brother, they put me in a wheel chair and wheeled me round to see him. This was an overwhelming experience. All my family, including my sister in law and nieces were at his bed side. My brother looked amazing! The sparkle was back in his eyes, he had colour in his cheeks again. It was at that moment that I realised just how sick he had been. I couldn't stay long, cos i felt very weak and faint, mainly due to the morphine.

I came off the morphine the next day because it was making me feel unwell and the pain wasn't that bad. They also removed my catheter (not as bad an experience as i had thought), which would force me to get up to walk to the toilet. That first non-catheter wee was very difficult, not painful, more like having to retrain your body to release the wee!! My sister in law gave me a good tip about pouring warm water over your nether regions as you sit on the loo, worked like a charm!! I highly recommend it, don't know if it will work for guys, but for the ladies definitely! 

Hospital does strange things to you, it makes you able to speak quite freely about your bowel movements to complete strangers, you get excited about going for a poo, you feel the need to report all aspects of that poo to anyone that will listen and you feel it necessary to high five your nearest and dearest or even the nurse, when you do eventually poo!! The combination of the fact that your bowels have been touched whilst in surgery and that Morphine can cause constipation, makes having a number 2 a very difficult experience, to say the least, hence the laxatives I had to take. So each poo you do is a relief and cause for celebration. Kidney transplant recovery is definitely not sexy!! So fair warning to your partner to expect to hear about your poos and expect some pretty gnarly farts too!!

I was discharged 5 days after surgery, they removed my wound drain which wasn't painful, just very uncomfortable. They changed all my dressings and taught me how to do it myself.

I said a final goodbye to my brother and went home.

The nurses and hospital staff on the Richard Bright ward of Guy's Hospital are utterly amazing. They are so friendly and helpful and I cannot thank them enough for taking such good care of my brother, my kidney and I.

After my first dressing change at home, i couldn't help but take a couple of snaps.

This is where they removed my kidney.

This is one of the 3 wounds where they inserted the instruments.

 

Going Under the Knife

I arrived at Guy's at 9am and reported for duty. I was feeling surprisingly calm, unbelievably hungry and in dire need of a cup of tea!! But I had to be nil by mouth from midnight!! Sad face.

I was told that surgery would be at 12pm. A young doctor came to see me, had me fill in the various forms and put a cannula in my hand, so that he could take some blood samples and it would be where the anesthetic would be administered later on. I changed into my sexy backless gown, disposable knickers and even sexier DVT socks.

 

Then one of the surgeons came to see me to explain the surgery, which was called a left hand assisted laproscopic nephrectomy. He then showed me where they would make their incisions and asked to draw on me.

 

Not what I had expected, I'll be honest! I thought my abdomen was going to look like a dot to dot, not just a single arrrow!! I was a little disappointed! It was now about 11:30am. My brother was on the male part of the ward, so I popped round to see him, he'd been taken for a quick round of dialysis as his potassium levels were high. I was then told that there was a delay as they were waiting for the blood results as soon as the Doctors have them, we can get started. My parents turned up at about 12pm, so we just sat and chilled out best we could waiting for news. 

The consultant anesthetist, also came to see me, to explain his role in the surgery. He asked when I had last eaten or drunk anything, I said about 10pm last night. He looked surprised, he then proceeded to tell me that as my surgery was an afternoon surgery, they usually recommend that the patient be nil by mouth for 6 hours prior to the surgery!! Basically meaning that I could have had a huge fry up and a bucket of tea before 6am!! I was gutted to say the least!! He promised me a big tea when I woke up!!   

Then at 2:45pm the nurse came to tell me it was go time. I said my goodbyes to my family and was wheeled down to theatre and into the anesthesia room. The nurse was really nice, I was asked to confirm my name and date of birth, at this point I felt very overwhelmed and started crying. The nurse was great, she calmed me down and told me that they are going to put me under in a minute and that everything was going to be ok and that I was very brave. My surgeon came to see me one last time, to make sure I was ok and was still good to continue, I agreed I was. 

The anesthetist, came over and explained that he was now going to put me under but first he was going to inject an anti-biotic. Then he said "so you make drinks for a living do you?" I said "I haven't for a while but yes".

 He asked if I make the best one for myself. I said yes, I make mine stronger. At this point I started to feel woozy and a bit drowsy, he asked if my drinks made me feel like this... At that point I had no choice but to close my eyes, they felt like they had bricks on them.

This is what my surgery would have looked like. I was laid on my side for 3 hours, with a gut full of gas, so that they could manipulate their instruments easier.

The next think I remember is coming to in the recovery room. Which, to me looked similar to the anesthesia room, so I began to freak out a little and asked why they had woken me, I'm supposed to be giving a kidney, you have to take me to surgery! The nice nurse, informed me that the surgery had been completed and I was in recovery, I still didn't believe her, so she lifted my sheet and showed me the wounds.

I was like "Oh!!" I looked at the clock and it was 7:30pm. I immediately asked about my brother and was told that he was still in surgery but would be out soon. I now had a catheter fitted, a patient controlled morphine drip, IV fluids and a wound drain, which you can see in the picture above. I was back on the ward for about 8:15pm. 

I wasn't in a great deal of pain, the morphine saw to that! I was just sore and a little uncomfortable. Once on the ward I was in and out of consciousness, thanks to the anesthesia and the morphine. The nurses would wake me every hour to take my blood pressure and my temperature, so it was difficult to get any real rest. I was told that my brother was now in recovery and doing well. (He later told me that when he came round in recovery, he demanded a vodka and orange and shouted for everyone to shut up, cos it was too noisy!! Clearly he had no idea where he was!!)   Once Jon was compos mentus, which we think was about 11pm, he was taken for a chest X-ray, a scan and an ECG, standard procedure so I'm told. He was eventually brought back to the ward at about 12:45am. They wheeled him into see me. He looked completely spaced out, bless him. We said a quick hi, etc. Then I'm pretty sure we both passed out!!

The Day Before Surgery

My brother had to be at Guy's this morning at 10am, to have a line in his neck fitted for the Plasma exchange. They are stripping his blood of any antibodies that will react with mine. The machine was very noisey. 

This is the machine. Pretty gnarly huh?

I'll be heading over tomorrow for 9am, when I'm sure I'll bloody starving. I have to be nil by mouth from midnight. No morning cuppa for me, gutted!! 

I've been weirdly calm today, had a few tears on the phone with my mum earlier. It's been a sort of surreal day. We've all been waiting for this day for what seems like forever and it's come round so quickly. 

I will continue blogging my recovery and may even have some before and after shots for ya!! 

The Mouse Ran Up the Clock

My brother and I went up to Guys on Thursday for our pre-op tests. We had more bloods taken, a urine test, a MRSA test, an ECG and our weight and height measured.

We also met with Guy's transplant co-ordinator and two other Donor's. My brother and I found this quite sad as one of the donors was giving his kidney to his 3 year old daughter. I was suddenly faced with the true magnitude of what we are doing. Myself and this stranger connected by our choice to save the lives of the people we love.
During this meeting they explained what would happen on the day of surgery. I will be admitted at 9am, the surgeon will come and see me and probably draw where he will make his incisions on my abdomen. At about 12:30 I will be taken to pre-op where they will administer the anesthetic, once under I will be given a catheter and taken into the theatre. The surgery will take about 3 hours. My brother will be brought down at about 1:30pm and the same will happen to him.
Once the surgery is complete we will be taken to recovery where we will be for about 3 hours, when we wake, we will have a few "attachments", as they call them, a catheter, a cannula in one hand connected to IV fluids and a cannula in the other hand connected to liquid morphine, which we can self-administer! Yipee!! My brother will have an extra attachment at his neck, near his collar bone. This is so they can administer drugs quickly should they need to, there was one other reason, but i forget. We will then be transferred to the ward.

24 hours after surgery, the catheters and self administered morphine drip will be removed and they will ask me to try and get out of bed and sit in a chair. The sooner I am up and about the quicker the healing process can begin. I will be in hospital for about 5 days, my brother will be there for 7-10 days. He will be receiving all kinds of anti-rejection meds and monitored closely for signs of rejection.

The next thing we need to do before surgery is meet the independent assessor from the Human Tissue Authority (HTA). They will interview us separately, they are making sure there is no coercion. We have to take our passport or driving license, our birth certificates and photo's of us together. Feels more like an immigration interview, making sure we are actually getting married out of love not a need to stay in the country!! However, I do understand why this has to be done.I just wasn't expecting it to be so indepth.

Only 9 days to go and I would be lying if I said I wasn't freaking out!!! The waiting is the hardest part, it's the suspense. Plus every TV programme I watch, surgery seems to crop up, even if the programme has nothing to do with surgery. I have a good network of friends and family around me that help keep me grounded and stop me from spinning out. There's a couple people missing from that network but I know that they are thinking of me and would be here if they could.

Tick Tock...

Surgery is in two weeks. Tomorrow my brother and I will visit Guy's for our pre-admission tests and some other stuff.

I am very surprised at just how calm I feel. All this time I thought I was being strong for my family, when really I was being strong for me. Truth be told I feel a little stronger each day. Sure, I'm having freaky dreams and the op is never far from thoughts, but surely that's all natural? I mean I'm having surgery that I don't need. I keep waiting for a meltdown, the kind I usually have at pressure moments, but nothing. There is still time....

I've never had a lot of confidence in myself or my abilities, I am the first to criticise myself and usually harshly, I have never been able to take compliments or praise very well, I usually just laugh or shrug it off.  Lately though, I feel transformed, I feel like my sparkle is returning and I can't help but think that maybe, my brother isn't the only person to benefit from this transplant. I am too.

I am seeing myself very differently lately and even thinking differently too. The "I can't do its" or the "I'm not good enoughs" have diminshed greatly. Sure they haven't gone completely but they definitely aren't as loud.

The great thing about all of this is not only have I begun to discover myself, but everytime I look at my big brother, now and in the future, I will always be reminded of the gift he gave to me, not just the gift I gave to him.

WOW, that's so corny!! Sometimes real talk is, I'm afraid.

Bills, Bills, Bills...

One of my biggest concerns going into this donor business, was how will I support myself whilst off work. Rent & bills still needs to be paid! My family can't help me, even if I wanted them to as it can be seen as coercion.

If you are employed you are of course entitled to statutory sick pay and if you employer offers their own sick pay scheme, you can have that to. When I started this journey I was employed and thought that I would probably take the first month as holiday, as company sick pay wasn't offered other than statutory. It really depends on your employer, I guess. Some see it as a great thing to do and will offer as much help as they can, others will just offer the minimum.

Now, 5 weeks away from surgery, I find myself in a different situation, I am eligible to claim Job Seekers Allowance (JSA) up until the time of the surgery, then I will have to claim Employment and Support Allowance (ESA) during my recovery period. I am also entitled to housing benefit and council tax benefit, but to what amount remains to be seen as I only put in my claim yesterday. I'll try and update this when I find out.

Another great thing, is that I am able to claim for all my travel and reasonable miscellaneous expenses back from the NHS. So trips to both Brighton & London hospitals etc etc.

If you are employed, you can also apply for a loss of earning grant, I think the cap is £5000. But definitely something to think about claiming.

I was very surprised to discover that these things exist. After all it is my decision to donate I don't have to. However, I guess there needs to some sort of "perk" for giving up an organ.

My Upcoming Schedule....

5 weeks to go and I'm gonna be a busy girl...

BRIGHTON
Thursday 09.01.14 - 10am - Renal Ultrasound, ECG, Chest X-ray & bloods

GUYS HOSPITAL
Thursday 30.01.14 - 9am - Pre-admission tests
                                    11am - Pre-admission group education session
                                    1pm - Pre-clerking appointment (whatever that is.)

Wednesday 12.02.14 - 9am - Admission to Hospital
                                         ?pm - SURGERY

Monday 10.03.14 - 2pm - Post Op follow up.

How do like them apples???