People always ask me...

People often ask me what, if any restrictions will there be on my life only having one kidney. Their main concern seems to be whether or not I can still consume alcohol! Which, working in the booze industry I can understand.

There are very few, if any restrictions upon my life. I can still drink alcohol and I do not need to go on any special diets. Long term studies have shown that kidney donors live as long or even longer than the rest of the population.However, there will be still be things that need to be monitored.

When one kidney is removed, the remaining kidney will swell, in order to compensate for the loss of the donated kidney.

Things that will need to be monitored:

• Blood pressure.
• Proteinuria. Excessive protein in the urine
• Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.

It is possible to have these conditions and still feel fine. Regular checkups with my doctor will be needed to monitor these conditions. Every year I'll have a urinalysis and have my blood pressure checked. Kidney function will also be checked (to monitor creatinine levels and GFR etc.)

Diet wise, they will recommend a heart healthy diet, lots of fruits and veg and high fiber foods. Limit salt and fat intake.I will however need to avoid high protein diets as a lot of protein puts too much stress on the remaining kidney.

Should I decide that I want a family, that is still possible. However, I will be monitored closely due to my age and the risk of high blood pressure. But that's not really a concern of mine.

As for the booze,as we all know excessive alcohol consumption can lead to high blood pressure and heart disease. These in turn can increase the risk of kidney disease. I was a heavy drinker in my younger years, but these days it's very much in moderation. I will still be able to get drunk if I want to, but it will take fewer drinks to get there. Cheap date!! So, this Christmas i will still get to enjoy a snowball or three!! 

Merry Christmas & A Happy New Year!!

The Surgery

There has been a change to the date of the surgery, it will now take place on 12th February 2014 at Guy's Hospital in London.

I have previously mentioned the surgery and posted some pretty graphic pictures. I've only given an account from my side and it was brief. I have been getting a lot of questions from people as the date nears about both sides of the surgery. So this post should help clear some of those questions up.

I have to have some more tests done as my previous tests have expired as they only last a year. One other thing that I have to do before the surgery is to meet with an independent assessor from the Human Tissue Authority (HTA). The assessor wants to make sure that I completely understand the implications of the process. They also have to make sure that I am not being either bribed or coerced into donating. Final approval for the transplantation must come from the Human Tissue Authority, and this can take a number of weeks.

In the fortnight or so before the surgery, both my brother and I will have some more blood tests done to ensure that nothing has changed and there will be a few pre-op investigations carried out as part of a pre-admission visit to the hospital.

My Operation
The operation to remove a kidney is a major operation that requires a general anaesthetic. The surgery usually takes about two to three hours.

The surgeon will remove my left kidney using “keyhole” or laparoscopic surgical techniques. It involves a number of small incisions (1–3 cm each), through which instruments are inserted to remove the kidney. A larger incision is then made to take the kidney out.

Once the kidney is removed it will be taken to my brother, who will be in another operating theatre.

My Brother's Operation
His surgery is a little more complex than mine and usually takes 3-4 hours to complete.
First, the surgeon will make an incision in my brother's lower abdomen (stomach), through which my kidney is put into place. My brother's diseased kidneys will be left where they are, unless they are causing a problem, such as an infection.
Then, blood vessels from his lower abdomen are attached to the blood vessels of my donated kidney. This is to provide the donated kidney with the blood supply that it needs to function properly.
Lastly, the ureter (the tube that carries urine from the kidney to the bladder) of the donated kidney is connected to your bladder.
My donated kidney should take over the work previously done by my brothers two kidneys, pretty much immediately. 

After the Surgery
 After the operation, we will be taken to a recovery room to wake up from the anaesthetic. We will both have several temporary tubes or lines inserted during our operations, which will include a tube inserted into the bladder (catheter) and possibly a drainage tube from the wound. These tubes are usually removed within a few days. Drugs for pain relief will be given immediately. Thank God!!

Whilst I am dosing up on the pain killers, my brother will begin treatment with medication designed to prevent his immune system from rejecting his new kidney.

Recovery
We will both be in hospital for about a week, perhaps more for my brother, but once home, I should be able to return to work and continue leading a normal life after about 6 weeks and my brother should be feeling much better within a few months and probably return to work to.

Doesn't sound so scary now, does it??! I am actually quite looking forward to the chance to have a good old rest!!

The Countdown has begun

In a little over 8 weeks now, I'll be donating my left kidney to my brother. The reality is beginning to set in.
I'm having to think about whether to take the time off from work as holiday or to take it as sick leave and where I am going to spend my convalescence time. Things I never really thought about before or had made assumptions about, but now I actually have to decide some stuff. Which, anyone that knows me well will agree, is not easy. I'm not great at making decisions. Would much rather have someone tell me what I should do.

As it was just over a year ago, since I had the first set of work up tests, I have to do the chest x-ray, renal ultrasound and bloods again as they have now expired. Obviously they need to make sure I am still fit and healthy enough to donate. I'm sure it'll all be fine. However, I still need to give up smoking :(. Really need to do that!!

The Ties that Bind

Peoples reactions upon discovering that I am donating a kidney to my brother, don't really differ all that much. The majority of people, think it's a wonderful thing to do for a person. There are some that feel my attitude towards what I am doing is a little too blasé, and to some extent I would agree.

Truth be told, I don't think I could go through with it if it wasn't for the love and unwavering support of my family and friends. They keep me grounded and give me the strength to face my fears.

Having a good support system is really important. Having people that will be there for you, not just during the all the tests, or visiting you in the hospital, or even during your recovery, but people that are there for EVERYTHING! The times when you are unsure of your decision, when your scared or just to talk about how you feel about what you are doing.

With these types of people in my life I feel I can be somewhat blasé, because I know that no matter what, these people have my back, they always have had and they always will do. No matter how strong a person you think you are, there are times when you need support, when you need people. So, don't ever be too proud or afraid to ask. We all need someone, sometimes.

So, I want to thank everyone that has been and is there for me throughout this and beyond and to all those people that have been reading this blog.

New Year, New Start...

I guess the title of this post is a bit of a give away.

My brother has decided to opt for a direct transplant, instead of the pooled scheme. He has decided this because the responsibility of letting another pair down, is too much. At least this way he can do the transplant, when he is ready and on his terms.

We have decided that we'd like to do the transplant in January and have a very tentative date set, which is the 24th January 2014. There it is! An actual date. My brother will be getting my left kidney, which i have named Lucy!! You know for lefty loosey, righty tighty!!

I thought hearing the date would scare me more than it has. Of course I am scared but I am also relieved to have a rough of idea of when it is going to happen. At least now we can both make some plans, I can let my employers know and organise my recovery period.

For the past 18 months or so, I have felt like I have had to put certain aspects of my life on hold because I never knew when the transplant was going to happen. Yes, there were definitely times when this was very frustrating for me but you have to remind yourself why your making these sacrifices. I am giving my brother the greatest gift you can give a person, so in the grand scheme the sacrifices I have made are a drop in the ocean.

One thing I do have to do prior to surgery is quit smoking!! So with that in mind I have signed up for Stoptober. It's a little early, true. However, I figure, I'll never again have a better motivator to stop smoking than donating kidney. So wish me luck.

The Fear

Donating a kidney is not something that should be entered into lightly. It’s a big thing to put your body through. Hence the reason you have to go through so many tests and meet with a counselor.

If you didn’t feel some degree of fear, I think you’d have to be superhuman. The surgery itself, is cause enough to feel scared. However, this is not a fear that I have felt, but I’m sure I will once a date is set.

The fear that I experience is a fear of failure. This is not new to me, it is something that I have always fought with and more often then not it’s gets the better of me. Some people that suffer with a fear of failure, for them it usually involves trying something new and failing. That isn’t the case for me. My fear is more to do with failing to achieve. I am always up for trying something new, sometimes it takes a little persuasion, but I’ll usually give it a try. However, when it comes to pushing myself to achieve more, I’m afraid I wont be good enough or that I wont reach my goal. So rather than face all that, I don’t try and make lame excuses and usually miss out. Then the inevitable kicking oneself usually follows.

Donating a kidney to my brother, hasn’t been safe from my fear of failure either. I worry that if it doesn’t work, I have failed him and my family and that is a lot of pressure to deal with. There have been a few times when it has gotten the better of me, but good friends have been there to reassure me that I am doing a good thing. So with a little help from friends and members of the kidney team, I have realized that if the transplant doesn’t work for whatever reason, it wont be me that has failed, after all I’m giving away a healthy organ. It took me a long time to accept that, but now that I have, I can finally begin to let go of that fear. Hopefully, I can transfer that logic to other areas of my life.

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.

Cross Matching Day

My brother and I went to the hospital together today, for the first time, for our tissue typing cross match tests.
It was a different experience. My brother doesn't talk much about his illness or how it effects his life and how he feels about it. He openly he admitted that he still feels like it is happening to someone else.
I didn't realise just how many tablets he has to take each day and what the side effects of both the meds and the illness were. He has to take 16 pills everyday, some of which are bicarbonate of soda tablets to help keep his potassium levels in check. He wasn't at all shy in admitting that they make him fart and burp a lot.
He is tired a lot of the time and gets horrendous pangs of nausea often. The nurse said that these are the early signs of renal failure, which of course gave me a lump in my throat.
My brother and I both had to give blood, to be sent off to Guys in London to be tested. My brother went first. The nurse took about 12 test tubes of blood from us both. Neither my brother or I are particularly fond of needles, so the nurse did a great job of distracting us by talking to us about tissue incompatible transplants.

As I have said before, my brother would need to have a treatment called plasma exchange to strip his blood of any antibodies that will react with mine. The risks are increased with an incompatible transplant. We will receive the results of this latest test in a week, the results of which will determine what will happen next.
If the results come back positive, then we will have to evaluate the risks involved and whether this type of transplant is the best course of action.
If the results come back negative, then we will both have to undergo some more tests and travel to Guys to meet with the consultants.

Now, my brother isn't exactly thrilled at the idea of the plasma exchange and I don't particularly want him to have to go through any extra procedures that could be avoided. However, is adamant that he want's to avoid dialysis, as he will lose a lot of his quality of life, by being being strapped up to a machine 4 hours a day, 3 days a week.

So the option of entering the paired scheme has come again. Mainly because, we could find a donor that is blood compatible, which would make the whole process a little easier on my brother. There are however some drawbacks to the scheme. They only do 4 matching runs a year, plus the fact that I'm blood group AB (the rare one) and can only donate to another AB, narrows our chances of getting a match quickly which could increase the need for him to go on Dialysis.

Last time this was discussed, both my brother and I had reservations about both receiving and donating kidneys from and to strangers. However, while I still have these reservations, my brother's mind has changed. This nurse did say however, that one of the patients who received a kidney from their father, felt a great sense of responsibility and felt he had to be extra careful, so as not to waste the gift he had be given. Something that I had thought about, previously. She went on to say, that when this same patient needed a second transplant, and his mother was unable to donate, they opted for the paired scheme. The recipient said he felt much more relaxed with a strangers kidney, as he didn't know the donor, and could go on to live the life he wanted. Something, which I hadn't considered.

Whichever way we decide to go I will still be helping my brother. I guess I just need to get my head around the idea of giving my kidney to a stranger and never knowing where it went.

We will now what for the results and go from there.

UPDATE: We were given the results the next day - they were negative. This is good because it means we can continue with the blood incompatible transplant only and not blood & tissue incompatible which is riskier!

latest Arrival

Got this in the post this morning...

So the procedure I have to have is called a cystoscopy. It's one of the two tests I've been dreading.

A Cystoscopy is an internal inspection of the bladder. It involves passing a small tube containing a miniature telescope along the urethra into the bladder. The urethra is the tube from your bladder through which urine drains.

Doesn't that sound just lovely!!!

The letter came with a leaflet explaining the procedure, which is as follows:-

"The doctor will clean the area first and then instill an anaesthetic jelly into the urethra which lubricates, anaesthetises and acts as an aseptic as well. The surrounding area will be covered with a sterile paper sheet and sterile towels.

The doctor will introduce the cystoscope into the urethra and then carefully pass into the bladder. The area of the sphincter may be slightly sensitive and the doctor may ask you to take a deep breath or to try and pass water, both of which help the sphincter to relax.

Once inside the bladder the doctor can control the tip of the cystoscope to allow him to look around the bladder. To help him do this fluid is run through the cystoscope to stretch out any folds in the bladder lining; so it is normal to feel that the bladder is full towards the end of the procedure."

Like I said DREADING THIS!!!

A fly in the ointment

I received a call from the hospital on Thursday (Valentines day) to bring me up to speed with my brothers latest tests and the current state of play.

I don't think I've mentioned this before but I had a whole heap of blood tests done a few months ago that were sent off to Guy's and St. Thomas' Hospital (this is where the operation will be done, by the way)  to be cross matched with my brothers blood samples.

The cross matching test indicates if specific immune reactivity is present between the donor and recipient. The test involves mixing the recipients blood with the donor's blood. The recipient may have antibodies that could injure the donor's cells - a positive cross match. Meaning that the recipient would probably reject the donor's implanted kidney.

The result of this cross match test was a negative cross match - this is a good thing, means the blood incompatible transplant will work.

The phone call I got on Thursday was to tell me that latest set of bloods, that were taken from my brother at his last check up, had a positive reaction when cross matched with mine. This is not great!
They don't know why this has happened or what caused the change, just that it happens sometimes.

Now our next step is tissue-type cross matching. This involves my brother and I going to the Kidney Unit together and giving several blood samples which will then be sent to Guys once again, to be tested.

The tissue-type of a person is determined by 'marker' proteins. The higher the percentage of proteins that match, the greater the chance that the transplant will be successful. This involves looking closely at our DNA. More information on this can be found here: http://www.organdonation.nhs.uk/

Ideally, we want a negative result. However, tissue incompatible transplants can still be performed, this does carry higher risks and my brother would need extra treatments  to give the procedure the best chance for success this would include plasma exchange.

In July 2011, St' George's Hospital performed it's first tissue incompatible kidney transplant. Read the full story here: St George's tissue incompatible transplant

I think you'll agree that there is plenty to take in there. It's taken me this long to get my head around it and do a bit of research and I'm still not completely clear on it.

So we just have to wait for our appointment to come through, which I'm told should only be a couple of weeks. I'm also told that the tests I still need have finally been requested from the relevant departments, so, it shouldn't be much longer. Fingers crossed!

Still Waiting.....

So 2013 has arrived but my appointments haven't!! I still get the occasional phone call from the transplant co-ordinator making sure I'm still up for it and I'm told there is a backlog and my dates are being chased. So I just have to wait I guess.

In the meantime....

For the most part I try not think to much about being a Kidney donor or potential kidney donor should I say! Mainly, because I'd probably end up talking myself out of it - it's a pretty scary topic, giving one of your organs to somebody else. But also, not something to be entered into lightly either.

Recently, I got a text from my mum telling me that they were going to admit my brother to hospital as one of his blood tests had comeback with a very high potassium level (potassium in high amounts is bad for kidneys). Of course my first thoughts were for my brother, "is he ok?, How serious is this? etc". Then I thought, "OH MY GOD!! The time to get cut open is drawing nearer!!" Stupid thought, I know!! But that thought, scared me. Obviously, it didn't scare me enough to deter me from donating and as it turned out it was all sort of a false alarm. Some mix up at the lab!! Which as you can imagine made my brother pretty cross, to say the least.

But the point I'm trying to make, is that every now again little things pop up that remind me of what I've signed up for and that I have perhaps been too relaxed about the whole thing. Obviously I'm not gonna put my life on hold but I do need to think about it more and get a little more comfortable with the idea.

This may sound like I'm having second thoughts - I can assure you, I am not!! I'll admit, there have been a few wobbles - mainly selfish wobbles but I do want to help my brother and so here I am waiting for the rest of my tests.