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.
Sunday, 29 September 2013
Thursday, 5 September 2013
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.
Thursday, 15 August 2013
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.
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.
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.
- 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.
- 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)
- We can do a direct transplant from me to him, which carries with it slightly more risks and extra treatments.
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.
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.
Tuesday, 6 August 2013
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!!"
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.
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!!"
Wednesday, 24 July 2013
Pass it on
This website is really helping me.
https://moodgym.anu.edu.au/moodgym
If you know someone with depression pass it on.
https://moodgym.anu.edu.au/moodgym
If you know someone with depression pass it on.
Monday, 22 July 2013
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!!
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!!
Tuesday, 4 June 2013
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.
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.
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