Surgery is in two weeks. Tomorrow my brother and I will visit Guy's for our pre-admission tests and some other stuff.
I am very surprised at just how calm I feel. All this time I thought I was being strong for my family, when really I was being strong for me. Truth be told I feel a little stronger each day. Sure, I'm having freaky dreams and the op is never far from thoughts, but surely that's all natural? I mean I'm having surgery that I don't need. I keep waiting for a meltdown, the kind I usually have at pressure moments, but nothing. There is still time....
I've never had a lot of confidence in myself or my abilities, I am the first to criticise myself and usually harshly, I have never been able to take compliments or praise very well, I usually just laugh or shrug it off. Lately though, I feel transformed, I feel like my sparkle is returning and I can't help but think that maybe, my brother isn't the only person to benefit from this transplant. I am too.
I am seeing myself very differently lately and even thinking differently too. The "I can't do its" or the "I'm not good enoughs" have diminshed greatly. Sure they haven't gone completely but they definitely aren't as loud.
The great thing about all of this is not only have I begun to discover myself, but everytime I look at my big brother, now and in the future, I will always be reminded of the gift he gave to me, not just the gift I gave to him.
WOW, that's so corny!! Sometimes real talk is, I'm afraid.
Wednesday, 29 January 2014
Wednesday, 8 January 2014
Bills, Bills, Bills...
One of my biggest concerns going into this donor business, was how will I support myself whilst off work. Rent & bills still needs to be paid! My family can't help me, even if I wanted them to as it can be seen as coercion.
If you are employed you are of course entitled to statutory sick pay and if you employer offers their own sick pay scheme, you can have that to. When I started this journey I was employed and thought that I would probably take the first month as holiday, as company sick pay wasn't offered other than statutory. It really depends on your employer, I guess. Some see it as a great thing to do and will offer as much help as they can, others will just offer the minimum.
Now, 5 weeks away from surgery, I find myself in a different situation, I am eligible to claim Job Seekers Allowance (JSA) up until the time of the surgery, then I will have to claim Employment and Support Allowance (ESA) during my recovery period. I am also entitled to housing benefit and council tax benefit, but to what amount remains to be seen as I only put in my claim yesterday. I'll try and update this when I find out.
Another great thing, is that I am able to claim for all my travel and reasonable miscellaneous expenses back from the NHS. So trips to both Brighton & London hospitals etc etc.
If you are employed, you can also apply for a loss of earning grant, I think the cap is £5000. But definitely something to think about claiming.
I was very surprised to discover that these things exist. After all it is my decision to donate I don't have to. However, I guess there needs to some sort of "perk" for giving up an organ.
If you are employed you are of course entitled to statutory sick pay and if you employer offers their own sick pay scheme, you can have that to. When I started this journey I was employed and thought that I would probably take the first month as holiday, as company sick pay wasn't offered other than statutory. It really depends on your employer, I guess. Some see it as a great thing to do and will offer as much help as they can, others will just offer the minimum.
Now, 5 weeks away from surgery, I find myself in a different situation, I am eligible to claim Job Seekers Allowance (JSA) up until the time of the surgery, then I will have to claim Employment and Support Allowance (ESA) during my recovery period. I am also entitled to housing benefit and council tax benefit, but to what amount remains to be seen as I only put in my claim yesterday. I'll try and update this when I find out.
Another great thing, is that I am able to claim for all my travel and reasonable miscellaneous expenses back from the NHS. So trips to both Brighton & London hospitals etc etc.
If you are employed, you can also apply for a loss of earning grant, I think the cap is £5000. But definitely something to think about claiming.
I was very surprised to discover that these things exist. After all it is my decision to donate I don't have to. However, I guess there needs to some sort of "perk" for giving up an organ.
Tuesday, 7 January 2014
My Upcoming Schedule....
5 weeks to go and I'm gonna be a busy girl...
BRIGHTON
Thursday 09.01.14 - 10am - Renal Ultrasound, ECG, Chest X-ray & bloods
GUYS HOSPITAL
Thursday 30.01.14 - 9am - Pre-admission tests
11am - Pre-admission group education session
1pm - Pre-clerking appointment (whatever that is.)
Wednesday 12.02.14 - 9am - Admission to Hospital
?pm - SURGERY
Monday 10.03.14 - 2pm - Post Op follow up.
How do like them apples???
BRIGHTON
Thursday 09.01.14 - 10am - Renal Ultrasound, ECG, Chest X-ray & bloods
GUYS HOSPITAL
Thursday 30.01.14 - 9am - Pre-admission tests
11am - Pre-admission group education session
1pm - Pre-clerking appointment (whatever that is.)
Wednesday 12.02.14 - 9am - Admission to Hospital
?pm - SURGERY
Monday 10.03.14 - 2pm - Post Op follow up.
How do like them apples???
Sunday, 22 December 2013
People always ask me...
People often ask me what, if any restrictions will there be on my life only having one kidney. Their main concern seems to be whether or not I can still consume alcohol! Which, working in the booze industry I can understand.
There are very few, if any restrictions upon my life. I can still drink alcohol and I do not need to go on any special diets. Long term studies have shown that kidney donors live as long or even longer than the rest of the population.However, there will be still be things that need to be monitored.
When one kidney is removed, the remaining kidney will swell, in order to compensate for the loss of the donated kidney.
Things that will need to be monitored:
Diet wise, they will recommend a heart healthy diet, lots of fruits and veg and high fiber foods. Limit salt and fat intake.I will however need to avoid high protein diets as a lot of protein puts too much stress on the remaining kidney.
Should I decide that I want a family, that is still possible. However, I will be monitored closely due to my age and the risk of high blood pressure. But that's not really a concern of mine.
As for the booze,as we all know excessive alcohol consumption can lead to high blood pressure and heart disease. These in turn can increase the risk of kidney disease. I was a heavy drinker in my younger years, but these days it's very much in moderation. I will still be able to get drunk if I want to, but it will take fewer drinks to get there. Cheap date!! So, this Christmas i will still get to enjoy a snowball or three!!
Merry Christmas & A Happy New Year!!
There are very few, if any restrictions upon my life. I can still drink alcohol and I do not need to go on any special diets. Long term studies have shown that kidney donors live as long or even longer than the rest of the population.However, there will be still be things that need to be monitored.
When one kidney is removed, the remaining kidney will swell, in order to compensate for the loss of the donated kidney.
Things that will need to be monitored:
- Blood pressure.
- Proteinuria. Excessive protein in the urine
- Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.
Diet wise, they will recommend a heart healthy diet, lots of fruits and veg and high fiber foods. Limit salt and fat intake.I will however need to avoid high protein diets as a lot of protein puts too much stress on the remaining kidney.
Should I decide that I want a family, that is still possible. However, I will be monitored closely due to my age and the risk of high blood pressure. But that's not really a concern of mine.
As for the booze,as we all know excessive alcohol consumption can lead to high blood pressure and heart disease. These in turn can increase the risk of kidney disease. I was a heavy drinker in my younger years, but these days it's very much in moderation. I will still be able to get drunk if I want to, but it will take fewer drinks to get there. Cheap date!! So, this Christmas i will still get to enjoy a snowball or three!!
Merry Christmas & A Happy New Year!!
Saturday, 30 November 2013
The Surgery
There has been a change to the date of the surgery, it will now take place on 12th February 2014 at Guy's Hospital in London.
I have previously mentioned the surgery and posted some pretty graphic pictures. I've only given an account from my side and it was brief. I have been getting a lot of questions from people as the date nears about both sides of the surgery. So this post should help clear some of those questions up.
I have to have some more tests done as my previous tests have expired as they only last a year. One other thing that I have to do before the surgery is to meet with an independent assessor from the Human Tissue Authority (HTA). The assessor wants to make sure that I completely understand the implications of the process. They also have to make sure that I am not being either bribed or coerced into donating. Final approval for the transplantation must come from the Human Tissue Authority, and this can take a number of weeks.
In the fortnight or so before the surgery, both my brother and I will have some more blood tests done to ensure that nothing has changed and there will be a few pre-op investigations carried out as part of a pre-admission visit to the hospital.
My Operation
The operation to remove a kidney is a major operation that requires a general anaesthetic. The surgery usually takes about two to three hours.
The surgeon will remove my left kidney using “keyhole” or laparoscopic surgical techniques. It involves a number of small incisions (1–3 cm each), through which instruments are inserted to remove the kidney. A larger incision is then made to take the kidney out.
Once the kidney is removed it will be taken to my brother, who will be in another operating theatre.
My Brother's Operation
His surgery is a little more complex than mine and usually takes 3-4 hours to complete.
First, the surgeon will make an incision in my brother's lower abdomen (stomach), through which my kidney is put into place. My brother's diseased kidneys will be left where they are, unless they are causing a problem, such as an infection.
Then, blood vessels from his lower abdomen are attached to the blood vessels of my donated kidney. This is to provide the donated kidney with the blood supply that it needs to function properly.
Lastly, the ureter (the tube that carries urine from the kidney to the bladder) of the donated kidney is connected to your bladder.
My donated kidney should take over the work previously done by my brothers two kidneys, pretty much immediately.
After the Surgery
After the operation, we will be taken to a recovery room to wake up from the anaesthetic. We will both have several temporary tubes or lines inserted during our operations, which will include a tube inserted into the bladder (catheter) and possibly a drainage tube from the wound. These tubes are usually removed within a few days. Drugs for pain relief will be given immediately. Thank God!!
Whilst I am dosing up on the pain killers, my brother will begin treatment with medication designed to prevent his immune system from rejecting his new kidney.
Recovery
We will both be in hospital for about a week, perhaps more for my brother, but once home, I should be able to return to work and continue leading a normal life after about 6 weeks and my brother should be feeling much better within a few months and probably return to work to.
Doesn't sound so scary now, does it??! I am actually quite looking forward to the chance to have a good old rest!!
I have previously mentioned the surgery and posted some pretty graphic pictures. I've only given an account from my side and it was brief. I have been getting a lot of questions from people as the date nears about both sides of the surgery. So this post should help clear some of those questions up.
I have to have some more tests done as my previous tests have expired as they only last a year. One other thing that I have to do before the surgery is to meet with an independent assessor from the Human Tissue Authority (HTA). The assessor wants to make sure that I completely understand the implications of the process. They also have to make sure that I am not being either bribed or coerced into donating. Final approval for the transplantation must come from the Human Tissue Authority, and this can take a number of weeks.
In the fortnight or so before the surgery, both my brother and I will have some more blood tests done to ensure that nothing has changed and there will be a few pre-op investigations carried out as part of a pre-admission visit to the hospital.
My Operation
The operation to remove a kidney is a major operation that requires a general anaesthetic. The surgery usually takes about two to three hours.
The surgeon will remove my left kidney using “keyhole” or laparoscopic surgical techniques. It involves a number of small incisions (1–3 cm each), through which instruments are inserted to remove the kidney. A larger incision is then made to take the kidney out.
Once the kidney is removed it will be taken to my brother, who will be in another operating theatre.
My Brother's Operation
His surgery is a little more complex than mine and usually takes 3-4 hours to complete.
First, the surgeon will make an incision in my brother's lower abdomen (stomach), through which my kidney is put into place. My brother's diseased kidneys will be left where they are, unless they are causing a problem, such as an infection.
Then, blood vessels from his lower abdomen are attached to the blood vessels of my donated kidney. This is to provide the donated kidney with the blood supply that it needs to function properly.
Lastly, the ureter (the tube that carries urine from the kidney to the bladder) of the donated kidney is connected to your bladder.
My donated kidney should take over the work previously done by my brothers two kidneys, pretty much immediately.
After the operation, we will be taken to a recovery room to wake up from the anaesthetic. We will both have several temporary tubes or lines inserted during our operations, which will include a tube inserted into the bladder (catheter) and possibly a drainage tube from the wound. These tubes are usually removed within a few days. Drugs for pain relief will be given immediately. Thank God!!
Whilst I am dosing up on the pain killers, my brother will begin treatment with medication designed to prevent his immune system from rejecting his new kidney.
Recovery
We will both be in hospital for about a week, perhaps more for my brother, but once home, I should be able to return to work and continue leading a normal life after about 6 weeks and my brother should be feeling much better within a few months and probably return to work to.
Doesn't sound so scary now, does it??! I am actually quite looking forward to the chance to have a good old rest!!
Saturday, 23 November 2013
The Countdown has begun
In a little over 8 weeks now, I'll be donating my left kidney to my brother. The reality is beginning to set in.
I'm having to think about whether to take the time off from work as holiday or to take it as sick leave and where I am going to spend my convalescence time. Things I never really thought about before or had made assumptions about, but now I actually have to decide some stuff. Which, anyone that knows me well will agree, is not easy. I'm not great at making decisions. Would much rather have someone tell me what I should do.
As it was just over a year ago, since I had the first set of work up tests, I have to do the chest x-ray, renal ultrasound and bloods again as they have now expired. Obviously they need to make sure I am still fit and healthy enough to donate. I'm sure it'll all be fine. However, I still need to give up smoking :(. Really need to do that!!
I'm having to think about whether to take the time off from work as holiday or to take it as sick leave and where I am going to spend my convalescence time. Things I never really thought about before or had made assumptions about, but now I actually have to decide some stuff. Which, anyone that knows me well will agree, is not easy. I'm not great at making decisions. Would much rather have someone tell me what I should do.
As it was just over a year ago, since I had the first set of work up tests, I have to do the chest x-ray, renal ultrasound and bloods again as they have now expired. Obviously they need to make sure I am still fit and healthy enough to donate. I'm sure it'll all be fine. However, I still need to give up smoking :(. Really need to do that!!
Saturday, 2 November 2013
The Ties that Bind
Peoples reactions upon discovering that I am donating a kidney to my brother, don't really differ all that much. The majority of people, think it's a wonderful thing to do for a person. There are some that feel my attitude towards what I am doing is a little too blasé, and to some extent I would agree.
Truth be told, I don't think I could go through with it if it wasn't for the love and unwavering support of my family and friends. They keep me grounded and give me the strength to face my fears.
Having a good support system is really important. Having people that will be there for you, not just during the all the tests, or visiting you in the hospital, or even during your recovery, but people that are there for EVERYTHING! The times when you are unsure of your decision, when your scared or just to talk about how you feel about what you are doing.
With these types of people in my life I feel I can be somewhat blasé, because I know that no matter what, these people have my back, they always have had and they always will do. No matter how strong a person you think you are, there are times when you need support, when you need people. So, don't ever be too proud or afraid to ask. We all need someone, sometimes.
So, I want to thank everyone that has been and is there for me throughout this and beyond and to all those people that have been reading this blog.
Truth be told, I don't think I could go through with it if it wasn't for the love and unwavering support of my family and friends. They keep me grounded and give me the strength to face my fears.
Having a good support system is really important. Having people that will be there for you, not just during the all the tests, or visiting you in the hospital, or even during your recovery, but people that are there for EVERYTHING! The times when you are unsure of your decision, when your scared or just to talk about how you feel about what you are doing.
With these types of people in my life I feel I can be somewhat blasé, because I know that no matter what, these people have my back, they always have had and they always will do. No matter how strong a person you think you are, there are times when you need support, when you need people. So, don't ever be too proud or afraid to ask. We all need someone, sometimes.
So, I want to thank everyone that has been and is there for me throughout this and beyond and to all those people that have been reading this blog.
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