Gaining some insight

I have been somewhat homeless the last couple of weeks and so my brother and his family have very kindly taken me in, until my new place is available. Living with them, has given me a small insight into just how kidney disease has affected his life and the lives of his family. I had obviously done a far amount of research into the subject, hours of googling and reading etc etc but I had no idea just how it affects a person.
There is a list on the fridge in their kitchen of what foods he can and cannot have. Fresh fruit juices, spinach, chips, bananas, salt, various pulses, chocolate, beer, ale, stout, to name just a few are NO NO's. Water, fizzy drinks, potatoes (boiled or roasted), fish, some dairy, spirits, he's allowed. That's just a snap shot of the list.
He has to take a silly amount of medication everyday, I think he said it was 12 tablets a day.
He wakes up still tired and goes to bed exhausted, and sometimes has to have a nap on the sofa (mainly on weekends). He used to get terrible gout a lot, but one of the 12 pills he takes now helps to reduce flair ups. His ability to grip things tightly has reduced greatly due to muscle wastage. His brain has gotten "foggy" his memory isn't what it used to be. There are other side affects too, but I'm sure he wouldn't like me divulging those, so I wont.
I once heard him tell a nurse, when asked how he was feeling, that he didn't really know. He has become so used to feeling the way he does that he's unsure whether he feels unwell or not. Which must be quite common in a lot of kidney patients.
The kidneys are amazing things, their function is to filter out the toxins as waste and to filter the good bits to where they need to go. When the kidneys don't function properly, they don't filter correctly, so the body is becoming more and more toxic, which is why my brother suffers(ed) with gout so much and the foggy brain, muscle wastage etc etc.

My brother asked me the other day, for the first time since all this began, what my kidney function was. I told him that the left kidney, the one I'm donating has 54% function and the right has 46%. To which he replied, "That's not very good!"
"How is that not good?" I said. "My kidneys are functioning at 100% and your gonna get the strongest one."
 I think the penny dropped then, the percentages he has been told his kidney's function at, is the combined total, not just one kidney!! 

At his appointment last week he was told that his kidney function is at 14% and has been steadily deteriorating with each set of results. He has his bloods done about every 2 months and each time it has dropped another percent. So we have been told that the transplant will most likely happen in 3 to 6 months. So have a decision to make.

1. We can enter the pooled scheme in September and hope for a match in the first run, which would mean surgery in November/December time.
2. We can wait till January for the next run by which time we could also be getting closer to dialysis (the very thing we are hoping to avoid)
3. We can do a direct transplant from me to him, which carries with it slightly more risks and extra treatments.

None of these are easy decisions, but nonetheless a decision MUST be made. I have told my brother that I am very happy to proceed in which ever way he decides is best for him. After all, the main focus of this whole thing is him as far as I am concerned. So if I can make his decision a little easier by telling him that I'll do whatever he wants then great!

I think by now you probably all understand what is involved in the direct transplant. I have made a cheeky little diagram to explain the pooled scheme a little better.

 A few people have asked me if my brothers diseased kidneys are replaced by my one kidney or if he will have 3 kidneys. The picture below should explain this.

The diseased kidney's will be disconnected, and will eventually sort of shrivel up. My kidney or the transplanted kidney, will be placed at the front, nearer to the bladder and then they will connect it to all the various veins and bladder. So yes, my brother will have 3 kidneys but only one that works.

I wont pretend that I'm not scared because of course I am. This is major surgery for both of us, but I have to look at the positives. My brother will be able to feel well and strong again and he'll be able to get back some sense of normality and I will have helped him do that.

That is brand new information.....

I arrived at Guy's a little early (fear of getting lost!!), just in time to have my height, weight and blood pressure measured. I'm happy to say that I was quite chuffed at what the scales had to say!!
Next it was a urine sample. This bit was actually quite different, they gave me this shoe horn looking device, to which I had to connect a sample bottle. You pee into the shoe horn and it trickles into the sample bottle. Much better than trying to aim directly into the sample bottle!!
Then it was blood tests. Another 6 tubes of my precious AB negative blood, sent off to be tested for HIV, HEP B&C, glucose levels, anti-body levels, etc, etc ( i can't remember them all, it was a very long list).

Now it was time to see the transplant surgeon. We spoke briefly about the current status of our case. I hadn't realised that we aren't waiting for my brother to reach some "magic number" as far as his kidney function is concerned, we are looking at the rate of deterioration of his kidney function. To put it plainly, some patients take 5 years to go from 12% function to 10% function, while others may take 3 or 4 months. Again there are no hard and fast rules here, everyone is judged on a case by case basis, plus kidney transplantation is, in the grand scheme of things, a relatively new surgery.

Then we spoke about the surgery, they will be performing a Hand-assisted Laparoscopic Nephrectomy. Which basically means that the surgeon will insert a camera, through a small hole in my abdomen and two other instruments through two other holes. An incision would be made under my belly button, where the surgeon would put his hand to hold the kidney, while they disconnect it and the kidney will then be removed through this same hole. Urgh, makes me shudder just thinking about it!!
Then I got some brand new information, he told me that they had decided they would take my left kidney. I was asked to lie down on the examination table and he would show me where they would make their incisions. The picture below shows the incision sites for the removal of a right kidney, but you get the idea.

 I will be laying on my side during the surgery, as that is the easiest way for them to gain access. I will also have a catheter fitted to drain the bladder. YUK! The surgery will take about 3 hours and the recovery time for this kind of surgery is about 6 weeks, unless you have a manual job then it can be up to 3 months! I will probably be in hospital for 5-7 days. They like to get you up and about on the second day after surgery as it helps the recovery process. No dates have been booked for surgery yet, as it obviously very much depends on my brothers condition.

My brother has his appointment with a Professor today, where I think they will discuss which transplant option is best for him. Paired scheme or direct transplant. I think they will also discuss his latest set of results and see what his current rate of deterioration is. So we just have to wait and see.

Below is a much more graphic image of the surgery, so if you are at all squeamish DO NOT LOOK AT IT.

Pretty gnarly huh?  I'm gonna have a belly full of scars, which doesn't bother me, as I'm not one for showing my mid-riff off anyway. All though, when all this is done and dusted, I am seriously getting a tattoo on my back where my kidney was that says, "Left kidney was 'ere!!"

Pass it on

This website is really helping me.
https://moodgym.anu.edu.au/moodgym
If you know someone with depression pass it on.

A Day to decide

My brother has an appointment at Guys hospital on 6th August to see a professor. I have been advised to join him for this appointment.

This is when we will be advised based on our case, which is our best option. Direct transplant (from me to him) OR the paired scheme (I donate to a stranger & he receives from a stranger).

When all is said and done, the final decision will rest with my brother and I. However, I am more than happy to do whatever he wants to do. Not because I'm indecisive or a procrastinator, but because I want this process to be as simple for my brother as is possible.

The direct transplant route, involves plasma exchange treatment for my brother, which doesn't sound very nice. The paired scheme would avoid that, as he would get an exact match.

My brother has been through enough with this illness and I don't want him to go through anything else that isn't absolutely necessary. So, as much as not knowing where my kidney has gone, is a little unsettling, if the paired scheme is going to be the easiest and the best option for him - then paired it is.

On a positive note, it might be kinda nice to think there is a part of me wandering around somewhere, that has enabled that person to live a more normal life. I think that's how I have to think about.

Besides, if I am struggling with it, there is a great counsellor I can see. Plus I'm sure they will prepare me as much as possible for both the physical and emotional side effects of the transplant surgery.

I'm ready!! For the first time in..... I think ever, actually. I am ready to do this. I don't have any more doubts, I have questions but no doubts. I feel good about what I'm "potentially" doing. I've made peace with it and I'm ready, I'm ready to help my brother claim his life back!!

No Kidney poking needed!

I was supposed to have the last of my tests, the renal biopsy, on Friday. I got a phone call today  telling me it had been cancelled.

If you remember, the reason i needed this biopsy, was because the protocol of Guys Hospital dictated that, if a potential donor had traces of blood in 3 or more urine samples than a cystoscopy and renal biopsy, were to be carried out.

My transplant nurse, had been reviewing my case and following a discussion with one of the Doctors and a recent change to Guy's protocols, it was decided that because the trace amounts of blood in my urine samples were so small and the cystoscopy exam came back clear, that a biopsy was unnecessary at this stage. That's not to say that I wont need it further down the line.

I am relieved that I no longer need the appointment at this stage. I definitely was not looking forward to having a huge needle stuck in my back. However, I'm more of a "rip the Band Aid off" kinda girl, so the fact that I may still need it, almost makes me just wanna get it done now. But these guys know what they are doing.

For now my work up as a potential kidney donor is complete. However,  the next step is to make an appointment to meet the consultant at Guys, both on my own and with my brother, to discuss our case and how best to proceed. This is basically where we will be advised whether the paired scheme or a direct transplant is our best option. From there my brother and I will decide which route we want to take.

I'm told that this appointment could take up to 6 weeks to come through. Obviously I will keep you all posted.

It IS a Big Deal!!!

I've been reading back through my blog lately, reliving the journey, as it were. I've come a long way down the line and there is still a way to go.

When I tell people I'm donating a kidney to my brother, their first reaction is usually, "WOW!! Your so brave!"

I don't feel brave, I'm scared! In fact I really wish that I hadn't told quite so many people. I constantly toy with the idea of sharing this blog on my personal facebook page. I want to raise awareness of Kidney & organ donation, but I'm not sure I'm comfortable with everyone I know knowing it's me!!

When I made the decision to donate a kidney to my brother, the first emotion I felt was, joy,weirdly!! Joy, at the idea that I could help my brother get better. Once, I met with the transplant nurse, my next emotion was fear!! It was almost overwhelming. This 'thing' that i had decided to do was a HUGE DEAL! I would eventually be cut open and have to live the rest of my life with ONE KIDNEY!! Oh my god!! What have I said yes to!!
Then, soon as I'd wrapped my head around it, the fear was replaced by a huge sense of responsibility!! Responsibility to my family, how would my relationships with my family be affected, if I decided not to donate or if the transplant doesn't work. The pressure was piling on, I was beginning to feel like I was my brother's only hope of avoiding dialysis.
I had to get some perspective and people telling me how brave I was or what a big deal this was, was definitely not helping. I felt a bit alone.
About this time, I had meetings with both the Consultant and the counsellor. Voila, perspective!! They broke it all down for me, helped me see everything clearly and make sense of my feelings.

Now, I still have some of those feelings, but I don't let them overwhelm me. I just deal with each feeling as it comes up and try and keep my eye on the bigger picture.

I was thought, my brother would get his kidney directly from me, but now I think it may be better to enter the paired scheme and donate my kidney to a stranger, so that my brother can receive a better matched kidney. I feel like this way, some of the pressure is removed and that sense of responsibility is lessened.

This blog has been great therapy for me during my journey, it's enabled me to get my feelings and fears out of my head. I just hope you're all enjoying reading what I'm putting out there.

Inside my insides

Today I had my appointment for a Flexi Cystoscopy at The Princess Royal Hospital in Haywards Heath. In case you've forgotten why I'm having this procedure, it's because 3 of the 4 urine samples I have given had trace amounts of blood in them. Guy's Hospital have asked for this test and a renal biopsy to be done, to make sure there is no sinister reason for the traces of blood in my urine, before they continue working me up as donor.

 There was quite a bit of waiting around before I got shown to a changing room, where one of those fetching hospital gowns was waiting for me. You know the ones that allow your bum to hang out the back for all to see!!

I was asked to empty my bladder before the procedure (which i did about 3 times, nerves!). I was shown into the "procedure room", where a nice nurse and Doctor were waiting.

I sat on the bed, whilst the Doctor explained what was going to happen and that I could watch it on a screen, if I wished. Which I declined.

I laid back on the bed in a very undignified position, ladies, you'll know what I mean!! The bend your legs, heels together and let your knees fall to the side!! As I said, undignified!! The Doctor applied some warm saline solution to cleanse the area, this was weird but kinda nice. Then the anaesthetic jelly was applied, this was very uncomfortable, quick but uncomfortable.

Then the dreaded camera was inserted into my urinary passage and into the bladder, this wasn't that bad at all. It felt strange and unpleasant but it wasn't nearly as bad as I'd thought it would be. I looked to the left where the screen was, and there in glorious technicolor was the inside of my bladder. As the Doctor moved the camera around, I saw both holes that lead to each kidney, one on the left and one on the right. I saw that my bladder was a light pink colour, you couldn't really make out the shape, as the camera moves so quickly.

The whole procedure took about 5 minutes, the doctor said that everything looked good and there were no abnormalities. BRILLIANT!!

Once, they were finished, I was dying for the loo. The Doctor had warned me that I may have a stinging or burning sensation when I passed water, which I was prepared for. I was not however, prepared for what happened next!

Now usually when you have a wee, the urine is warm as it's been sitting inside you for however long. My wee was icy cold! It was the strangest sensation ever. It gave me a little shock, I can tell ya!
My wee was cold because they flush water into the bladder whilst having a look around, to make it easier for the Doctor to manouvre the camera.

I now have to drink plenty of water, a cup an hour is recommended, to ease passing urine, as it does sting somewhat. There is a small chance I could develop a bladder infection, but the Doctor assures me that if I drink plenty of water and go to the toilet when needed, instead of holding it, I should be fine.

I am so glad that procedure is out of the way. I have one more invasive test to have, which is the renal biopsy but I am still waiting for an appointment for that.

So until next time...

P.S. Feel free to share this blog with your friends, I want to raise as much awareness for the process of Kidney donation as possible. I have a facebook page as well which can be found at My Brother, My Kidney And I.

Thanks again for reading.