So, not a lot to tell really, Christmas is around the corner and no movement on the kidney front - which I guess is a good thing really, means my big bro is doing good and his kidney function hasn't deminished enough to require the transplant.
I am, however, still waiting for appointments, for those 2 dreaded procedures, the camera up my wee wee hole and the needle in the back, kidney biopsy one!!! I'm honestly in no great hurry for either of those!! I'm sure that envelope containing those dreaded dates will hit my doorstep at some point in the New Year!! Until then my avid followers.... We wait.
Wednesday, 12 December 2012
Monday, 29 October 2012
I am still here..
I haven't abandoned my blog. I just haven't heard anything more from the Kidney Unit. However, as soon as I do you, my followers will be the first to know.
Tuesday, 2 October 2012
Did I just wet myself?
Today I had my CT angiogram. I was a wee bit scared as I thought it was one of the tunnel ones. I'm not claustrophobic but the thought of being stuck in one of those, unable to move. Didn't exactly fill me joy.
I had to change into one of those god awful hospital gowns, luckily my ass wasn't hanging out the back for all to see!! When i was called to the scanner room, i was very pleased to see that it wasn't a tunnel at all. It looked more like a donut, with a thin bed coming out of it.
I lay on the bed, while the nurse inserted a cannula into my arm, into which they would administer the x-ray dye. When i was ready and comfortable the bed moved into the donut, i was asked to take a breath in and hold it for a few seconds as each picture was taken.
They then administered the x-ray dye. This was the weirdest feeling ever! Not uncomfortable at all, just very odd. My whole body suddenly felt very warm and i suddenly got this feeling that i had wet myself, which made me feel uneasy, to say the least
The whole thing took about 5 minutes and when i got off the bed I was very relieved to see that i had in fact NOT wet myself.
Not sure what's next... I think it is the tests I've been dreading....duh duh duh!! I'm sure I'll get a call from my transplant co-ordinator letting me know how things are proceeding and what's next.
As usual watch this space......
I had to change into one of those god awful hospital gowns, luckily my ass wasn't hanging out the back for all to see!! When i was called to the scanner room, i was very pleased to see that it wasn't a tunnel at all. It looked more like a donut, with a thin bed coming out of it.
I lay on the bed, while the nurse inserted a cannula into my arm, into which they would administer the x-ray dye. When i was ready and comfortable the bed moved into the donut, i was asked to take a breath in and hold it for a few seconds as each picture was taken.
They then administered the x-ray dye. This was the weirdest feeling ever! Not uncomfortable at all, just very odd. My whole body suddenly felt very warm and i suddenly got this feeling that i had wet myself, which made me feel uneasy, to say the least
The whole thing took about 5 minutes and when i got off the bed I was very relieved to see that i had in fact NOT wet myself.
Not sure what's next... I think it is the tests I've been dreading....duh duh duh!! I'm sure I'll get a call from my transplant co-ordinator letting me know how things are proceeding and what's next.
As usual watch this space......
Wednesday, 12 September 2012
Plenty of Food for Thought
Yesterday was a tough day for me. New things to consider and new information to absorb.
I saw the Consultant first, he was a nice chap, but spoke so slowly... the appointment seemed to go on forever. I had a full work up, listened to my heart and lungs,took my blood pressure, felt my glands, examined my abdomen and even gave me a breast exam!!
We discussed my medical history, previous surgeries and my current lifestyle, my smoking, my drinking and my diet etc...
Then onto the kidney stuff, he went over all my results from the tests I've had so far and everything is looking good. We then discussed my brother's condition, I was told that according to the last test he had done, he had approximately 21% kidney function, which is actually pretty good. According to the Consultant, my brothers kidney function needs to go down to about 7% or 8% before the transplant is absolutely necessary. If my brothers function continues to deteriorate at it's current rate, then it could be anything up to 5 years before he needs the transplant. However, should he contract an infection or virus then it could be quicker.
We discussed the risks involved for donors, the main issue I will face is the risk of major surgery. All surgery carries risks, no matter how big or small. The most common risks associated with my surgery (a nephrectomy) are usually relatively minor and can be treated appropriately. These Include:-
At this point it was also made very clear to me that I am free to change my mind at anytime and if I didn't want to tell my family I had voluntarily withdrawn, they could help me with that.
It was also explained to me that as my brother has opted to go for an ABO Incompatible transplant, a riskier type of transplant, he would also have to undergo further treatments. These will remove the antibodies against my blood group in order to allow the transplant to take place. This involves administering a drug which suppresses antibody production and a treatment called Plasma Exchange. This procedure involves plasma (part of your blood) being removed and replaced with new plasma. However, he'll only need these treatments in the run up to the transplant.
We also discussed my future and whether or not I'd like to have children. I said "yes, I would one day. But not in the immediate future."
I know that I can still have a healthy pregnancy with only one kidney, but i would be a high-risk pregnancy and I'd be monitored more closely. However, what I hadn't thought about was, If the timing of my decision to start a family conflicted with my brothers need for a transplant, and if I had a child prior to my brother needing a transplant, my antibody's would change and may render me unable to donate. This was something I hadn't even thought about. To be honest, it totally blew my mind and left me feeling kinda crappy! How does someone make that choice? Knowing that if you choose to start a family you could be letting someone down, and not just someone your OWN brother!! It's a toughy!!
In the gap between, the end of my appointment with the Consultant and seeing the counsellor, I had to give some more blood samples to be sent to Guy's Hospital to be tested for cross-matching and I had to give another urine sample.
The urine test revealed a trace amount of blood, yet again!! Which now means that the tests I'd hope to avoid, the cystoscopy and renal biopsy, are now necessary!!
As soon as I stepped foot inside the counsellor's office, this huge wave of emotion washed over me, and i burst into tears. The discussion I'd just had with the Consultant had sunk in, along with the need for the tests I've feared and the enormity of what lies ahead hit me like a 10 tonne truck!! Obviously, my meeting with the counsellor was private, so I wont be giving you a blow by blow account of what we talked about, but we did discuss my family and my relationship with them, my support network, my history of depression and how i feel about my decision to donate my kidney. After a few tears and plenty of tissues, she told me that she saw no reason why I shouldn't donate and that she thought I was strong enough to deal with the psychological side of donation. Whoopee!!
The next test needed is a Renal CT, which will look at the anatomy of my kidneys, the position of them, how many veins go to them and which kidney is gonna be the best for them to take. I'm not entirely sure when I'll have to have the cystocopy or renal biopsy but I shall as always keep you posted.
I saw the Consultant first, he was a nice chap, but spoke so slowly... the appointment seemed to go on forever. I had a full work up, listened to my heart and lungs,took my blood pressure, felt my glands, examined my abdomen and even gave me a breast exam!!
We discussed my medical history, previous surgeries and my current lifestyle, my smoking, my drinking and my diet etc...
Then onto the kidney stuff, he went over all my results from the tests I've had so far and everything is looking good. We then discussed my brother's condition, I was told that according to the last test he had done, he had approximately 21% kidney function, which is actually pretty good. According to the Consultant, my brothers kidney function needs to go down to about 7% or 8% before the transplant is absolutely necessary. If my brothers function continues to deteriorate at it's current rate, then it could be anything up to 5 years before he needs the transplant. However, should he contract an infection or virus then it could be quicker.
We discussed the risks involved for donors, the main issue I will face is the risk of major surgery. All surgery carries risks, no matter how big or small. The most common risks associated with my surgery (a nephrectomy) are usually relatively minor and can be treated appropriately. These Include:-
- Wound, urinary tract & chest infections, which occur in approximately 1 in 3 donors.
- Bleeding that requires a blood transfusion or blood clots, this occurs approx 1 in 50 donors.
- Death - this is very rare occurring in 1 in 3,300 donors.
At this point it was also made very clear to me that I am free to change my mind at anytime and if I didn't want to tell my family I had voluntarily withdrawn, they could help me with that.
It was also explained to me that as my brother has opted to go for an ABO Incompatible transplant, a riskier type of transplant, he would also have to undergo further treatments. These will remove the antibodies against my blood group in order to allow the transplant to take place. This involves administering a drug which suppresses antibody production and a treatment called Plasma Exchange. This procedure involves plasma (part of your blood) being removed and replaced with new plasma. However, he'll only need these treatments in the run up to the transplant.
We also discussed my future and whether or not I'd like to have children. I said "yes, I would one day. But not in the immediate future."
I know that I can still have a healthy pregnancy with only one kidney, but i would be a high-risk pregnancy and I'd be monitored more closely. However, what I hadn't thought about was, If the timing of my decision to start a family conflicted with my brothers need for a transplant, and if I had a child prior to my brother needing a transplant, my antibody's would change and may render me unable to donate. This was something I hadn't even thought about. To be honest, it totally blew my mind and left me feeling kinda crappy! How does someone make that choice? Knowing that if you choose to start a family you could be letting someone down, and not just someone your OWN brother!! It's a toughy!!
In the gap between, the end of my appointment with the Consultant and seeing the counsellor, I had to give some more blood samples to be sent to Guy's Hospital to be tested for cross-matching and I had to give another urine sample.
The urine test revealed a trace amount of blood, yet again!! Which now means that the tests I'd hope to avoid, the cystoscopy and renal biopsy, are now necessary!!
As soon as I stepped foot inside the counsellor's office, this huge wave of emotion washed over me, and i burst into tears. The discussion I'd just had with the Consultant had sunk in, along with the need for the tests I've feared and the enormity of what lies ahead hit me like a 10 tonne truck!! Obviously, my meeting with the counsellor was private, so I wont be giving you a blow by blow account of what we talked about, but we did discuss my family and my relationship with them, my support network, my history of depression and how i feel about my decision to donate my kidney. After a few tears and plenty of tissues, she told me that she saw no reason why I shouldn't donate and that she thought I was strong enough to deal with the psychological side of donation. Whoopee!!
The next test needed is a Renal CT, which will look at the anatomy of my kidneys, the position of them, how many veins go to them and which kidney is gonna be the best for them to take. I'm not entirely sure when I'll have to have the cystocopy or renal biopsy but I shall as always keep you posted.
Thursday, 30 August 2012
Let's talk
Well the appointment I've been sort of dreading has finally arrived. Seeing the Renal Counsellor!
The appointment is on Tuesday 11th September, after I've seen the Consultant.
My appointment with the consultant is first, so when I see the counsellor a couple hours later, I should be furnished with all the information on my particular case.
I have this weird thing, that whenever I talk about my feelings, I get all emotional. Now I'm sure the counsellor's office is the right place to do that but I'm worried that it'll come across as me not being ready or not strong enough to cope with emotional aspects of the surgery and donation etc.
This is also the time when I'll have to discuss the dreaded question "how will you feel if the surgery doesn't work?" A question I have agonized over and probably thought more about than the procedure itself. How WILL I feel? How will I feel when this amazing thing I'm doing doesn't work? Even now, that question makes me feel physically sick. I've been making jokes and trying to keep the whole thing light because it just makes it easier for me to get my head around.
The surgery itself, may not take place for a while yet, as my brother still has fairly decent kidney function and they don't tend to perform the surgery unroll he absolutely needs it. The best way to explain it is that, you don't put new batteries in your TV remote until the current ones stop working, and that's kinda the same for kidney transplants. However, it's a fine balancing act, the timing has to be just right, as they obviously wanna give my brother the best chance.
I've seen counsellor's before, and talking to a stranger about my issues didn't really phase me too much - it a lot of ways it was kind of easier. However, the idea of talking to a stranger about kidney donation, my brother, my family, my feelings etc does sort of scare me - I guess because there is a lot riding on this as she will fill out a report assessing whether or not I am mentally and emotionally stable enough to do this!!
The appointment is on Tuesday 11th September, after I've seen the Consultant.
My appointment with the consultant is first, so when I see the counsellor a couple hours later, I should be furnished with all the information on my particular case.
I have this weird thing, that whenever I talk about my feelings, I get all emotional. Now I'm sure the counsellor's office is the right place to do that but I'm worried that it'll come across as me not being ready or not strong enough to cope with emotional aspects of the surgery and donation etc.
This is also the time when I'll have to discuss the dreaded question "how will you feel if the surgery doesn't work?" A question I have agonized over and probably thought more about than the procedure itself. How WILL I feel? How will I feel when this amazing thing I'm doing doesn't work? Even now, that question makes me feel physically sick. I've been making jokes and trying to keep the whole thing light because it just makes it easier for me to get my head around.
The surgery itself, may not take place for a while yet, as my brother still has fairly decent kidney function and they don't tend to perform the surgery unroll he absolutely needs it. The best way to explain it is that, you don't put new batteries in your TV remote until the current ones stop working, and that's kinda the same for kidney transplants. However, it's a fine balancing act, the timing has to be just right, as they obviously wanna give my brother the best chance.
I've seen counsellor's before, and talking to a stranger about my issues didn't really phase me too much - it a lot of ways it was kind of easier. However, the idea of talking to a stranger about kidney donation, my brother, my family, my feelings etc does sort of scare me - I guess because there is a lot riding on this as she will fill out a report assessing whether or not I am mentally and emotionally stable enough to do this!!
Monday, 20 August 2012
Pictures as promised
So this first picture is of the chest X-ray I had done last year.
Is it a boy, is it a girl? No it's my kidney!!
These next pictures are of the Glomerular Filtration Rate test.
These pictures show my kidneys filtering out the isotope tracer that was injected into my vein. This was the test that I found most interesting.
My next appointment is on September 11th which will be with the consultant. Where I believe, we will go through the results of the tests I've had done so far and what the next steps are. I think then he will send me for a Renal Ct which will show the surgeon the anatomy of my kidneys, so that they can decide which is the best/easiest kidney for them to remove. I'm told it's usually the left kidney but we'll see.
I also still need to see the counsellor, I'm just waiting for the letter.
Is it a boy, is it a girl? No it's my kidney!!
These next pictures are of the Glomerular Filtration Rate test.
These pictures show my kidneys filtering out the isotope tracer that was injected into my vein. This was the test that I found most interesting.
My next appointment is on September 11th which will be with the consultant. Where I believe, we will go through the results of the tests I've had done so far and what the next steps are. I think then he will send me for a Renal Ct which will show the surgeon the anatomy of my kidneys, so that they can decide which is the best/easiest kidney for them to remove. I'm told it's usually the left kidney but we'll see.
I also still need to see the counsellor, I'm just waiting for the letter.
Wee Wee Test
Last week I had my 3rd urine test. On the bus on the way to the appointment I downed a 1.5 Litre bottle of water, as I had to give a larger sample than usual because Sally, the nurse wanted to send off some for cancer screening.
The nurse tested my urine and hooray!!! No blood or protein present!!! BUT instead of moving on to the next step, she now wants me to come back in about 2 weeks time to do ANOTHER sample and IF that one is also clear of blood and protein, then i definitely wont need those other tests.
Obviously I am pleased at the result of my latest sample but also a little disappointed as I really thought that having a clean sample THIS time round would mean that I wouldn't need to do those other tests. So fingers crossed that my next and hopefully final sample will be clear too!!!
I understand that they have to air on the side of caution and rule out everything that could affect my ability to be a donor, but it does get a little frustrating sometimes.
The nurse tested my urine and hooray!!! No blood or protein present!!! BUT instead of moving on to the next step, she now wants me to come back in about 2 weeks time to do ANOTHER sample and IF that one is also clear of blood and protein, then i definitely wont need those other tests.
Obviously I am pleased at the result of my latest sample but also a little disappointed as I really thought that having a clean sample THIS time round would mean that I wouldn't need to do those other tests. So fingers crossed that my next and hopefully final sample will be clear too!!!
I understand that they have to air on the side of caution and rule out everything that could affect my ability to be a donor, but it does get a little frustrating sometimes.
Tuesday, 14 August 2012
How do you measure significance?
This whole donation business and people attitudes towards me and "this amazing thing I'm doing" has made me look at my life thus far in a very different way.
I'm 32 this year and in that time I don't feel as though I have really achieved anything of any real significance. But I guess that depends on how you measure significance. Is it significance to you or others? For me I guess it has always been a combination of the two.
I always had this feeling that I was "destined for more!" cheesy I know, but that said, I just never had a clue what that "more" was. I am definitely not saying that donating a kidney to my brother is it, cos that would just be such a bloody cliche!! The movie My Sister's Keeper springs to mind!!!
I will admit though, that with each test I pass I feel a small sense of achievement. Doesn't make me any less scared though! I have some great friends around me and one in particular gives me great strength and makes me feel like there isn't anything I can't face. Again, cheesy I know but it's the truth.
I saw my Grandad the other day, now there is a man who has achieved a lot - mainly in the name of God, Queen and Country. He was a Commando in the Marines during WW2, his boss was Ian Fleming. Yes, the same Ian Fleming that wrote the James Bond books!! He told my mum that he is proud of me and my brothers and that really kinda choked me up. It's not that it means more coming from a war veteran, it just means a lot!!
I'm 32 this year and in that time I don't feel as though I have really achieved anything of any real significance. But I guess that depends on how you measure significance. Is it significance to you or others? For me I guess it has always been a combination of the two.
I always had this feeling that I was "destined for more!" cheesy I know, but that said, I just never had a clue what that "more" was. I am definitely not saying that donating a kidney to my brother is it, cos that would just be such a bloody cliche!! The movie My Sister's Keeper springs to mind!!!
I will admit though, that with each test I pass I feel a small sense of achievement. Doesn't make me any less scared though! I have some great friends around me and one in particular gives me great strength and makes me feel like there isn't anything I can't face. Again, cheesy I know but it's the truth.
I saw my Grandad the other day, now there is a man who has achieved a lot - mainly in the name of God, Queen and Country. He was a Commando in the Marines during WW2, his boss was Ian Fleming. Yes, the same Ian Fleming that wrote the James Bond books!! He told my mum that he is proud of me and my brothers and that really kinda choked me up. It's not that it means more coming from a war veteran, it just means a lot!!
Monday, 30 July 2012
A* Bladder Control
Today I had my renal ultrasound test. My brother also had his today, his appointment was 15 minutes earlier than mine, so we went together.
I was able to stay and watch my brothers test before i had mine. We had to lay on our side on the couch, the sonographer put cold gel on our side and then scanned the kidney, taking measurements and pictures as she went. We then had to turn on the other side, while she repeated the procedure. Finally, we had to lay on our back, whilst she scanned our bladder.
She told us that our kidneys and bladder were fine and normal. The test took about 10 minutes and wasn't unpleasant at all.
I'm just glad that i didn't wet myself!! Having a full bladder with a hacking, tickly cough is certainly not a marriage made in heaven. Especially when she was scanning my bladder! Pressing the hand-held probe over my bladder - I was so relieved to finally be able to go for a wee at the end of the examination.
Next appointment is 16th August, when I will have to do another urine test and we will find out if I have to have the cystoscopic exam or the renal biopsy.
So until next time.....
I was able to stay and watch my brothers test before i had mine. We had to lay on our side on the couch, the sonographer put cold gel on our side and then scanned the kidney, taking measurements and pictures as she went. We then had to turn on the other side, while she repeated the procedure. Finally, we had to lay on our back, whilst she scanned our bladder.
She told us that our kidneys and bladder were fine and normal. The test took about 10 minutes and wasn't unpleasant at all.
I'm just glad that i didn't wet myself!! Having a full bladder with a hacking, tickly cough is certainly not a marriage made in heaven. Especially when she was scanning my bladder! Pressing the hand-held probe over my bladder - I was so relieved to finally be able to go for a wee at the end of the examination.
Next appointment is 16th August, when I will have to do another urine test and we will find out if I have to have the cystoscopic exam or the renal biopsy.
So until next time.....
Sunday, 29 July 2012
Potential Spanner....
On Thursday I went to the Kidney unit for some blood and urine tests, basically renewing the tests i did last year.
Should get my blood results next week, but the nurse was able to test my urine sample whilst I was there. Now, when i did this test last year, there were trace amounts of blood in my urine, but we thought this was due to it also being the tail end of my time of the month. This time when she tested it there were trace amounts of both blood and protein. I didn't have my time of the month this time round. The nurse went on to tell me that i would need to come back in a fortnight and have another urine test and if there are trace amounts of blood in that sample then I need to have cystoscopic examination and/or a Renal biopsy.
A cystoscopic exam involves a cystoscope, a thin tube with a tiny camera on the end, being inserted through the urethra (OUCH!!) to take pictures of the inside of the bladder.
The Renal Biopsy involves a special hollow needle being pushed through the skin and muscle into the kidney tissue to obtain a small sample from the kidney. Cells from the kidney can then be looked at in detail.
These tests will hopefully make sure that these traces of blood are not coming from either my kidneys or my bladder. I'm told that this is a pretty common occurrence and nothing to worry about.
However, like most things that we are told NOT to do we go right ahead and do the opposite. So, yes, I am worrying about it. I'm not particularly worried that they'll find something wrong with me, I'm more concerned that they will find something that prevents me from donating.
Now this chain of events, has kinda hit me like a tonne of bricks. If it didn't feel real before, it certainly does now and for the first time I actually feel really scared.
What if I can't donate? How will I feel about that? The question that really gets me, the question that the transplant nurse keeps telling me to think about is, How will I feel if my brothers body rejects my kidney? I thought about this a couple of times before Thursday and didn't think I could answer it now. But the truth is IF this doesn't work, I'll feel that I have let my family down, I'll have a scar to remind me of how i tried but failed to help my brother, what will it do to my relationships with my family, what will it do to my brother.
I kinda wish now, that I hadn't told so many people, cos whilst their support is greatly appreciated and their interest is moving. I get asked about it a lot now, and part of me wishes they'd stop asking, cos with every question they ask, that's something else I have to think about and the pressure increases. At the same time though, talking about it does help. I can't have both!
I do worry, that due to my sensitive and over-analytical nature, that when it comes to the counselling session, I will mess it up by breaking down, when they ask me that dreaded question, "How will I feel if the transplant doesn't take?" At the end of the day, this is my brother we are talking about, of course I will take it hard if it doesn't work and I'm not about to lie to the counsellor and say "yeah, sure it'll be a bummer but hey, at least I tried!"
Tomorrow I have my Renal ultrasound, which is already proving problematic, as i have to have a full bladder for the exam and I currently have a really tickly cough which is playing havoc with my bladder control!! So fingers crossed I can keep the cough under control for the hour before the exam. Wish me luck.
Should get my blood results next week, but the nurse was able to test my urine sample whilst I was there. Now, when i did this test last year, there were trace amounts of blood in my urine, but we thought this was due to it also being the tail end of my time of the month. This time when she tested it there were trace amounts of both blood and protein. I didn't have my time of the month this time round. The nurse went on to tell me that i would need to come back in a fortnight and have another urine test and if there are trace amounts of blood in that sample then I need to have cystoscopic examination and/or a Renal biopsy.
A cystoscopic exam involves a cystoscope, a thin tube with a tiny camera on the end, being inserted through the urethra (OUCH!!) to take pictures of the inside of the bladder.
The Renal Biopsy involves a special hollow needle being pushed through the skin and muscle into the kidney tissue to obtain a small sample from the kidney. Cells from the kidney can then be looked at in detail.
These tests will hopefully make sure that these traces of blood are not coming from either my kidneys or my bladder. I'm told that this is a pretty common occurrence and nothing to worry about.
However, like most things that we are told NOT to do we go right ahead and do the opposite. So, yes, I am worrying about it. I'm not particularly worried that they'll find something wrong with me, I'm more concerned that they will find something that prevents me from donating.
Now this chain of events, has kinda hit me like a tonne of bricks. If it didn't feel real before, it certainly does now and for the first time I actually feel really scared.
What if I can't donate? How will I feel about that? The question that really gets me, the question that the transplant nurse keeps telling me to think about is, How will I feel if my brothers body rejects my kidney? I thought about this a couple of times before Thursday and didn't think I could answer it now. But the truth is IF this doesn't work, I'll feel that I have let my family down, I'll have a scar to remind me of how i tried but failed to help my brother, what will it do to my relationships with my family, what will it do to my brother.
I kinda wish now, that I hadn't told so many people, cos whilst their support is greatly appreciated and their interest is moving. I get asked about it a lot now, and part of me wishes they'd stop asking, cos with every question they ask, that's something else I have to think about and the pressure increases. At the same time though, talking about it does help. I can't have both!
I do worry, that due to my sensitive and over-analytical nature, that when it comes to the counselling session, I will mess it up by breaking down, when they ask me that dreaded question, "How will I feel if the transplant doesn't take?" At the end of the day, this is my brother we are talking about, of course I will take it hard if it doesn't work and I'm not about to lie to the counsellor and say "yeah, sure it'll be a bummer but hey, at least I tried!"
Tomorrow I have my Renal ultrasound, which is already proving problematic, as i have to have a full bladder for the exam and I currently have a really tickly cough which is playing havoc with my bladder control!! So fingers crossed I can keep the cough under control for the hour before the exam. Wish me luck.
Saturday, 28 July 2012
From BBC Radio 4
Pamela wants to donate one of her kidneys to a stranger. She's extremely determined. She's also 82 years old. Should she be allowed to donate, and if so, who should get her kidney?
BBC Radio 4 - Ethics Commitee
BBC Radio 4 - Ethics Commitee
Tuesday, 24 July 2012
First set of results....
Got my results today! I have a GFR ( glomerular filtration rate) of 103. The norm is 90 or above - so that is a good result. My kidney function is good with the left kidney functioning at 54% and the right kidney functioning at 46%.
I have to go back to the hospital on Thursday to have my blood pressure and urine tested, then back on Monday for my ultra-sound. I also have an appointment to see the consultant on September 11th and somewhere inbetween that i have to have a Renal CT Angiogram, which is a more in depth study of my kidneys.
People ask me if i'm scared. I wouldn't say i'm scared, more nervous I think. I make jokes about it a lot cos it helps take the pressure off a bit. The question i get asked the most is will I still be able to drink alcohol?! I guess they ask me this because i manage a bar. I've never really been a massive drinker, so to be honest, that part bothers me the least. However, it is my understanding that one can go on to live a "normal, healthy life" with one kidney.
I have been asking myself some odd questions lately. Such as, I wonder how much a kidney weighs and how much weight i could lose by having one removed. Will my brother and i have that strange connection that some donors speak of, like being able to feel what the other person feels. Will having one kidney mean i need to wee more.
But the hardest question I am going to have to answer is how will i feel if after donating my kidney, my brother's body rejects it? I find this question very hard to answer, because a) I'd rather not think about that, and b) I don't know how I'll feel, i can't predict my feelings. Obviously I'll be upset but will I get over it, I don't know. What i do know is that if it doesn't work, I will have a constant reminder in the form of a scar on my body for the rest of my life. That FACT, i do struggle with!
I have a wonderful family and some amazing friends and to be honest, I don't think I could even contemplate donating a kidney if I wasn't surrounded by so many awesome people, who I know will be there for me and my brother every single step of the way. It is so important to have good people around you.
I have to go back to the hospital on Thursday to have my blood pressure and urine tested, then back on Monday for my ultra-sound. I also have an appointment to see the consultant on September 11th and somewhere inbetween that i have to have a Renal CT Angiogram, which is a more in depth study of my kidneys.
People ask me if i'm scared. I wouldn't say i'm scared, more nervous I think. I make jokes about it a lot cos it helps take the pressure off a bit. The question i get asked the most is will I still be able to drink alcohol?! I guess they ask me this because i manage a bar. I've never really been a massive drinker, so to be honest, that part bothers me the least. However, it is my understanding that one can go on to live a "normal, healthy life" with one kidney.
I have been asking myself some odd questions lately. Such as, I wonder how much a kidney weighs and how much weight i could lose by having one removed. Will my brother and i have that strange connection that some donors speak of, like being able to feel what the other person feels. Will having one kidney mean i need to wee more.
But the hardest question I am going to have to answer is how will i feel if after donating my kidney, my brother's body rejects it? I find this question very hard to answer, because a) I'd rather not think about that, and b) I don't know how I'll feel, i can't predict my feelings. Obviously I'll be upset but will I get over it, I don't know. What i do know is that if it doesn't work, I will have a constant reminder in the form of a scar on my body for the rest of my life. That FACT, i do struggle with!
I have a wonderful family and some amazing friends and to be honest, I don't think I could even contemplate donating a kidney if I wasn't surrounded by so many awesome people, who I know will be there for me and my brother every single step of the way. It is so important to have good people around you.
Friday, 20 July 2012
It's not just me
I feel it is important at this stage to say that it's not just me having these tests done, my other brother, is also being tested. Once all the tests are completed and the results are in, the medical team will tell us which of us is the MOST suitable candidate, then it will be down to us as a family, to decide which of us will donate.
Obviously there are lots of things to consider, for example, my brother has a young family and is a self-employed plasterer, so what would be the financial implications for him taking so much time off work. As for me I am single and employed full time, so i should be able to claim sick pay. My only REAL financial commitment is my rent.
So there are a lot of factors to take into consideration and this decision must be one that all concerned are happy with.
My brother is having his Isotope Glomerular Filtration Rate (GFR) and Isotope Renogram tests on Monday. Then we both have appointments for a Renal Ultrasound, mine is on July 30th. I also, got a letter this morning informing me that i have an appointment with the consultant on September 11th!
So it would seem that everything is ticking along. I have to admit, with each new appointment, I get a little more nervous, but who wouldn't it's no small thing.
I was also able to get copies of the images of my kidneys from the hospital, so as soon as i receive them, i shall upload them here - I hope you'll find it as interesting as i did.
Until next time guys....
Obviously there are lots of things to consider, for example, my brother has a young family and is a self-employed plasterer, so what would be the financial implications for him taking so much time off work. As for me I am single and employed full time, so i should be able to claim sick pay. My only REAL financial commitment is my rent.
So there are a lot of factors to take into consideration and this decision must be one that all concerned are happy with.
My brother is having his Isotope Glomerular Filtration Rate (GFR) and Isotope Renogram tests on Monday. Then we both have appointments for a Renal Ultrasound, mine is on July 30th. I also, got a letter this morning informing me that i have an appointment with the consultant on September 11th!
So it would seem that everything is ticking along. I have to admit, with each new appointment, I get a little more nervous, but who wouldn't it's no small thing.
I was also able to get copies of the images of my kidneys from the hospital, so as soon as i receive them, i shall upload them here - I hope you'll find it as interesting as i did.
Until next time guys....
Tuesday, 17 July 2012
I'm Radioactive
Having drunk my litre of fluid, I arrived at the Nuclear Medicine Unit and was greeted by a very odd lady who didn't seem to want to make eye contact with me at all.
First up, i was weighed and measured, have to say i was a little gutted at my weight but anyway. I was escorted to the scanning room where i was met by a very lovely older gentlemen named Lynn, who i buttered up by calling him McSteamy from Grey's Anatomy (for the record he looked nothing like him)!!
I laid down on a very narrow couch, while McSteamy found a vein in my left arm, in which to inject the radioactive tracer so that my kidneys could be seen by the imager. At this point he also administered another injection of a mild radioactive substance which would take longer to work and would eventually be used to assess the rate of clearance from my blood. More on that later.
Whilst laying on the couch, I could see a black and white monitor which was showing images of my kidneys, almost like an X-ray. I was relieved to see that i did in fact have TWO kidneys!! Great start!!
The Images started with 2 very white kidney shaped blobs and a smaller white blob at the bottom of the screen, my bladder. In the 25 minutes or so that i lay there, I watched my kidneys turn from bright white to grey grainy blobs as they filtered out the tracer. My bladder got whiter & whiter and larger & larger, it was really quite cool to watch but I was so glad when my time was up as i was desperate for a wee!!
Once I had gone to the little girls room, i had to get back onto the couch for a quick 1 minute image. When they had checked that they had the images and other information they needed, i was free to leave the unit. I was instructed to return to the unit in 2 hours for the first of 4 blood samples they would take.
I bummed around the hospital with my friend for a couple hours, took full advantage of the hospital restaurant's £2.50 5-piece breakfast - BARGAIN!! Then we headed back to the unit, the same odd lady beckoned me into a consultation room and explained that i would have a cannula put into my right arm (opposite arm to which the tracer had been administered earlier).
This next part is not for the squeamish but is also not typical of what to expect i can assure you!! She put the tourniquet around my arm, found the vein and proceeded to put the cannula in my vein. Now, I'm not particularly squeamish but i don't like to watch them inserting things into my arms, so I looked away but I could feel her struggling to get it in, she then began shouting for her colleague, in walked McSteamy, she'd messed up and apparently gone in at the wrong angle, so McSteamy took over, at this point I looked down at my arm to see what was going on..... MISTAKE!!! As i looked down I saw blood spurt from my arm, which McSteamy quickly dealt with, i watched him draw the blood sample and instantly felt light-headed and the colour drained from my face. I was told to take a minute and was given some water, which made me feel much better. The feeling only lasted a minute and has never happened to me before and was all dealt with very quickly.
The cannula was left in my arm, I was bandaged up and told return in an hour when they'd take another blood sample.
This was repeated half an hour later and then again another half an hour after that. Once all 4 blood samples had been taken the cannula was removed, I was patched up and free to go home. I should get my results in about a week to 10 days.
It's a fairly long day to spend at the hospital 4 and half hours all in all, and a fair bit of waiting around. I'm glad i had a friend with me, otherwise i would have been really bored!
Next test is a renal ultrasound, which will check the size and shape of the kidneys and can exclude any anatomical abnormalities. I also need to have a few more blood tests and then an appointment with the consultant. It's all getting pretty real now, I expected to feel really overwhelmed by the enormity of it all but I'm not, I'm actually pretty relaxed about the whole thing but I'm sure that will all change.
First up, i was weighed and measured, have to say i was a little gutted at my weight but anyway. I was escorted to the scanning room where i was met by a very lovely older gentlemen named Lynn, who i buttered up by calling him McSteamy from Grey's Anatomy (for the record he looked nothing like him)!!
I laid down on a very narrow couch, while McSteamy found a vein in my left arm, in which to inject the radioactive tracer so that my kidneys could be seen by the imager. At this point he also administered another injection of a mild radioactive substance which would take longer to work and would eventually be used to assess the rate of clearance from my blood. More on that later.
Whilst laying on the couch, I could see a black and white monitor which was showing images of my kidneys, almost like an X-ray. I was relieved to see that i did in fact have TWO kidneys!! Great start!!
The Images started with 2 very white kidney shaped blobs and a smaller white blob at the bottom of the screen, my bladder. In the 25 minutes or so that i lay there, I watched my kidneys turn from bright white to grey grainy blobs as they filtered out the tracer. My bladder got whiter & whiter and larger & larger, it was really quite cool to watch but I was so glad when my time was up as i was desperate for a wee!!
Once I had gone to the little girls room, i had to get back onto the couch for a quick 1 minute image. When they had checked that they had the images and other information they needed, i was free to leave the unit. I was instructed to return to the unit in 2 hours for the first of 4 blood samples they would take.
I bummed around the hospital with my friend for a couple hours, took full advantage of the hospital restaurant's £2.50 5-piece breakfast - BARGAIN!! Then we headed back to the unit, the same odd lady beckoned me into a consultation room and explained that i would have a cannula put into my right arm (opposite arm to which the tracer had been administered earlier).
This next part is not for the squeamish but is also not typical of what to expect i can assure you!! She put the tourniquet around my arm, found the vein and proceeded to put the cannula in my vein. Now, I'm not particularly squeamish but i don't like to watch them inserting things into my arms, so I looked away but I could feel her struggling to get it in, she then began shouting for her colleague, in walked McSteamy, she'd messed up and apparently gone in at the wrong angle, so McSteamy took over, at this point I looked down at my arm to see what was going on..... MISTAKE!!! As i looked down I saw blood spurt from my arm, which McSteamy quickly dealt with, i watched him draw the blood sample and instantly felt light-headed and the colour drained from my face. I was told to take a minute and was given some water, which made me feel much better. The feeling only lasted a minute and has never happened to me before and was all dealt with very quickly.
The cannula was left in my arm, I was bandaged up and told return in an hour when they'd take another blood sample.
This was repeated half an hour later and then again another half an hour after that. Once all 4 blood samples had been taken the cannula was removed, I was patched up and free to go home. I should get my results in about a week to 10 days.
It's a fairly long day to spend at the hospital 4 and half hours all in all, and a fair bit of waiting around. I'm glad i had a friend with me, otherwise i would have been really bored!
Next test is a renal ultrasound, which will check the size and shape of the kidneys and can exclude any anatomical abnormalities. I also need to have a few more blood tests and then an appointment with the consultant. It's all getting pretty real now, I expected to feel really overwhelmed by the enormity of it all but I'm not, I'm actually pretty relaxed about the whole thing but I'm sure that will all change.
Monday, 16 July 2012
T'was the night before......
So, got my tests tomorrow and according to the info they sent me, i am supposed to drink between 500ml - 1 Litre of fluids before the time of my appointment. Just need to do a quick bit of GCSE maths to figure out how many cups of tea that is! Tea counts as fluids right?!
To be honest, I'm a little scared, the tests aren't a big deal, that's pretty easy! I'm scared they may discover something that means I can't donate or that they find something wrong with me. Plus, I've been getting dull pains in my kidneys all day. I'm pretty sure there isn't anything wrong with me and what I'm experiencing is psychosomatic. My kidneys are just as scared as I am!! It also, reminds me that the human body is a very strange place!!
Something tells me that sleeping is gonna be tricky tonight.
To be honest, I'm a little scared, the tests aren't a big deal, that's pretty easy! I'm scared they may discover something that means I can't donate or that they find something wrong with me. Plus, I've been getting dull pains in my kidneys all day. I'm pretty sure there isn't anything wrong with me and what I'm experiencing is psychosomatic. My kidneys are just as scared as I am!! It also, reminds me that the human body is a very strange place!!
Something tells me that sleeping is gonna be tricky tonight.
Sunday, 15 July 2012
So Back Tracking.....
So last year, when it became apparent that my eldest brother would need either dialysis or a kidney transplant - I put myself forward as a potential donor. He's my brother of course I would.
From the moment i opened my mouth to offer my kidney, I had this feeling that I would be a match and that I would be able to help him out. I already knew my blood type, which is AB. So i was gutted to discover that my brother was B and needs either a B or an O blood-group match. I thought that's it!! I can't donate my kidney to him.
Then, as more potential donors came forward that weren't blood-group compatible with my brother, it became apparent that the next option would be the paired-donation scheme. So i booked myself in for the tests.
I saw one of the Transplant Co-ordinator Nurses, she was very friendly and I felt very relaxed in her company. She made sure I knew exactly what it was I was offering to do and that I would go through a very thorough medical assessment. I would also have to see a psychologist and psychiatric report made. She explained the procedure and potential risks etc. After a few forms were signed, mainly ones asking for permission to gain access to my doctors file, that i agree to an HIV test and that i had understood all the information i had been given.
She then proceeded to ask me about my medical history and that of my families. My father has diabetes which means he's not a suitable donor for my brother. She asked me a few more questions re medical history etc and then came the tests:
Blood pressure
Blood taken for tests (about 8 tubes used)
Urine Sample
ECG (Electrocardiogram - Cardiograph of the heart function)
Chest X-ray.
I'd had to fast for a couple of them, so the sooner the tests began the better cos i was starving!! Once the many, many bloods were taken i was allowed a cup of tea!! Deep Joy!!
The blood would be tested for:
Hepatitis B & C
HIV
CMV (Cytomegalovirus - member of the Herpes Virus family)
Diabetes
Kidney & Liver function
Anaemia
I was at the Unit from 9am until about 2, I would advise that you take a good book as there is a far bit of waiting around, especially for the ECG and chest X-ray.
I got all my results back about a week later and everything was good, except my Creatine levels were a little low - but they think that maybe cos I fasted slightly longer than i was supposed to. Also, at this point because my blood-group is AB, they decided that they would not be conducting any further tests on me due to the rare nature of my blood type - basically there aren't many AB people out there with Kidney failure and an AB donor can only donate to an AB recipient! GAME OVER!!
Or so I thought.... Earlier this year my brother had an appointment at Guys and St Thomas Hospital in London, they have one of the largest blood group incompatible transplantation programmes in the UK, having transplanted over 70 blood group incompatible living donor recipients over the last 5 years.
Cutting a long story short it is now possible for my brother to receive a kidney from any blood group!! So, on Tuesday July 17th 2012 I will be visiting the Nuclear Medicine Unit at the Royal Sussex County Hospital to undergo so more tests, which are:
Isotope Glomerular Filtration Rate (GFR) - this is to assess the capability of the kidney to 'clear' the blood of a substance.
Isotope Renogram - this examines my kidney function
So that's the next step!! Wish me luck!!
From the moment i opened my mouth to offer my kidney, I had this feeling that I would be a match and that I would be able to help him out. I already knew my blood type, which is AB. So i was gutted to discover that my brother was B and needs either a B or an O blood-group match. I thought that's it!! I can't donate my kidney to him.
Then, as more potential donors came forward that weren't blood-group compatible with my brother, it became apparent that the next option would be the paired-donation scheme. So i booked myself in for the tests.
I saw one of the Transplant Co-ordinator Nurses, she was very friendly and I felt very relaxed in her company. She made sure I knew exactly what it was I was offering to do and that I would go through a very thorough medical assessment. I would also have to see a psychologist and psychiatric report made. She explained the procedure and potential risks etc. After a few forms were signed, mainly ones asking for permission to gain access to my doctors file, that i agree to an HIV test and that i had understood all the information i had been given.
She then proceeded to ask me about my medical history and that of my families. My father has diabetes which means he's not a suitable donor for my brother. She asked me a few more questions re medical history etc and then came the tests:
Blood pressure
Blood taken for tests (about 8 tubes used)
Urine Sample
ECG (Electrocardiogram - Cardiograph of the heart function)
Chest X-ray.
I'd had to fast for a couple of them, so the sooner the tests began the better cos i was starving!! Once the many, many bloods were taken i was allowed a cup of tea!! Deep Joy!!
The blood would be tested for:
Hepatitis B & C
HIV
CMV (Cytomegalovirus - member of the Herpes Virus family)
Diabetes
Kidney & Liver function
Anaemia
I was at the Unit from 9am until about 2, I would advise that you take a good book as there is a far bit of waiting around, especially for the ECG and chest X-ray.
I got all my results back about a week later and everything was good, except my Creatine levels were a little low - but they think that maybe cos I fasted slightly longer than i was supposed to. Also, at this point because my blood-group is AB, they decided that they would not be conducting any further tests on me due to the rare nature of my blood type - basically there aren't many AB people out there with Kidney failure and an AB donor can only donate to an AB recipient! GAME OVER!!
Or so I thought.... Earlier this year my brother had an appointment at Guys and St Thomas Hospital in London, they have one of the largest blood group incompatible transplantation programmes in the UK, having transplanted over 70 blood group incompatible living donor recipients over the last 5 years.
Cutting a long story short it is now possible for my brother to receive a kidney from any blood group!! So, on Tuesday July 17th 2012 I will be visiting the Nuclear Medicine Unit at the Royal Sussex County Hospital to undergo so more tests, which are:
Isotope Glomerular Filtration Rate (GFR) - this is to assess the capability of the kidney to 'clear' the blood of a substance.
Isotope Renogram - this examines my kidney function
So that's the next step!! Wish me luck!!
Back to the Beginning....
My eldest brother was diagnosed with Kidney Disease back in 2008, IgA Nephropathy to be exact and it’s fair to say he's been pretty complacent about it, or at least not been giving it much consideration apart from his routine hospital check ups. If he doesn’t think about it, it’s not really happening!!
Well, things have deteriorated pretty dramatically, and in August last year he was faced with what he pretended was never going to happen. A Kidney Transplant! And or Dialysis!
He almost certainly wants to avoid dialysis, and therefore is looking into something called a “Pre-emptive transplant” this means having a Living Donor give him a gift of a Kidney (everyone has 2).
Well, things have deteriorated pretty dramatically, and in August last year he was faced with what he pretended was never going to happen. A Kidney Transplant! And or Dialysis!
He almost certainly wants to avoid dialysis, and therefore is looking into something called a “Pre-emptive transplant” this means having a Living Donor give him a gift of a Kidney (everyone has 2).
As of October last year, all of the potential donors that had come forward including my other Brother and I were not a blood-group match for my eldest brother. So we are all going into a 'paired-donor scheme', where they try to
cross-match from incompatible pairs, so for example, my kidney would go
to the brother of another couple, whose sister would donate her kidney to my brother. The database run is performed every three months.
If a suitable
donor didn't come out of this then another option is for a more
specialised procedure where one of us does donate to my brother and they try to
remove the antibodies that he has against our blood group. The kidney
unit are currently in contact with Guys Hospital in london to get some
statistics on this to see if it is a viable option.
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