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.
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