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!!
Monday, 22 July 2013
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.
Friday, 19 April 2013
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.
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.
Tuesday, 2 April 2013
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.
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.
Thursday, 21 March 2013
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!
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!
Monday, 25 February 2013
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!!!
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!!!
Monday, 18 February 2013
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!
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!
Subscribe to:
Posts (Atom)