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I have put this site together for people who are facing a kidney transplant down the line and are after some idea of what they have coming. I was not really that nervous going into it, all I kept saying to myself was you won't be on dialysis after all this.
After a blood test in March 08 I was admitted to Hospital and stayed for 11 days, after two biopsy’s they realised I had a condition called FSGS in both my kidneys, which attacks the kidney filters and there's no cure only treatments, which are dialysis transplant or death!. I did not even think there was something like this could happen to me as I am healthy 20 years old and had no health problems in my life.
Unfortunately disease took hold and I deteriorated very quickly. They had to put in an emergency neckline in June to clean my blood, as I was poisoning myself and my toxin levels were seriously high. The next 6 months I was kept alive by a machine, going 3 times a week 4 hours at a time. With all this going on I was still going to work and playing inline hockey and using the gym. This was not going to control my life!
My dad had opted to have test to see if he was a match so he could donate a kidney, after a few months the results were back and he was a match. We had to see a few last people one of which being our surgeon. We now had a date for the transplant to take place 12th November!
We went into St George’s hospital for the transplant to take place. We were both in quite good moods joking around. Wednesday we got into a stockings and gowns, dad went down before me at about 11.30. I was still in the ward when it was 2.30 and i had been told nothing, so was getting a little worried. Then they came and got me. All I remember was talking to a few nice nurses in a small room before going through the theatre doors. Next thing I knew I was awake and I’m my ward was a few tubes stuck in me 5 in total. I thought I would be in a lot of pain but I was actually ok. Worst pain was having a catheter in! All my results were fine and I had all tubes out 2 days later. So for the 1st time in 6 months I don’t have any artificial tubes sticking out of me.
I have been home since Sunday 16th and feeling great. The wound is healing well and can't wait to start getting back to a normal life. I’m now back and forth to the hospital 3 days a week for clinic for blood tests. So far so good but the condition I have has 30/50% chance of reoccurring.
Now that I have been off dialysis for a week I have noticed that it's not a really bad thing, its just an interuption to your day that is not optional, you miss it your going to die! I was lucky to be able to have a laptop, ipod and a few books to keep me entertained during the 4 hours. Also the nurses were amazing at Farnham and kept me entertained.
Now that I have a third kidney I have a new life, which not many people get. I was lucky to get it so quickly but there are people out there which have to be on dialysis for years and years and die before getting a tranplant, but thanks to my dad he's given my life back, which I cant thank him enough for.
I would like to thank so many people, so many I can't mention all the names. Obviously My dad for having the balls to go through all this and risk his life to give me a new life. Big thanks to my mum, who has put on a brave face through all of this, shes driven me everywhere and kept me going. Thanks to all my family for their support. Friends have been great even though some of the time they dont know how to react to me but thats understandable. A huge thank you to all the docors and nurses who have helped me through this, especially the girls in the Beacon ward at st helier hospital who put up with me for so long, Christina ho who has been great with dad and I and our surgen Mr Fonok who did not let us bleed to death on the table.
2 week update
It's now over 2 weeks since my transplant and everything is going great. Since traveling hour and thirty minutes to the hospital monday wednesday and friday mornings I have had only positive news from the doctors.
There's quite a lot of things I need to get used to like drinking 2/3 litres a day which works out to be around 6 days intake when I was on dialysis. Going to the toilet which im not used to, i seem to get up 5 times during the night. Also I need to learn to sleep, lately im sleeping around 4 hours a night, maybe im worried about what the doctors are going to say the next time i see them, or if im going to get a phone call from them saying to come in urgently which has happened in the past.
Im on steriods and I was quite worried with how much I was eating to begin with, but now im now still eating loads (im getting good at cooking a chicken and bacon club) but im losing weight! They had to check my weight twice today, they couldnt beleive i was getting lighter!
My life is slowly coming back, able to do more but still not as much as before mainly because i get a bit sore. But im using my free time to learn a few new skills and catch up on all the great day time TV!
Just have to wait to see what the future brings...
3 week update
Its now just over 3 weeks since my operation and everything is going great. All my test results are fine and my doctor said
"Your an 8.5/10. But no one ever gets a 9 becasue life isnt that good"
Still got the problem of not sleeping, couldnt sleep last night so worked on a website navigation till 2.30 untill I thought that was enough, but then woke up 4.30 and layed there listening to music. My doctors say its a mixture of the drugs im taking. Minor thing i have noticed is I am slightly shakey, again thats due to tablets. These are really small issues I can live with seeing as I now have a functioning kidney.
Transkid site is doing well with 190 unique hits from 8 countries. I have loads of great feedback from people - some are surprised at how open i am with everything others just thanking me for telling my story.
I have writen an article for kidskidneyresearch website, which they will be adding sometime soon. This will help people understand how FSGS effected my life and how things could be for them.
I have been in contact with dragon skin in california about creating custom armor for me, this will enable me to still play hockey. Last week I sent them a template of what i was after and they are currently putting it together for me. If that fails McDavid have made me a padding tshirt, also I have booked an apointment with the NHS to make me something. So hopefully I will be back to hockey in the new season…
4 week update
So its now a month since I was given a kidney from my dad and everything was going great untill today, a few of my levels were up compared to normal so now i have to wait and see if they phone if they do then i will have to go in tommorrow for tests. If i hear nothing then all is good.
There could be a simple reason for the levels being up, it would be due to my new blood pressure tablet, if thats the case then everything is fine and I can stop worrying and look forward to xmas.
This week I have been in contact with dragon skin for my armor and they have quoted me $126 for making my pattern i sent them, also shock doctor have informed me that a designer is working up some concepts for me. I was told by a paintball sales man in Reading to look for lacrosse rib protection, so I have found exactly what im after and it only costs $60! so possibly i will end up buying one of them in the new year aswell.
Since having chicken wings the night before my transplant I seem to be addicted! goujons, bites, wings and breasts all with BBQ sauce. Iceland do awesome BBQ wings for £1.50 and you get loads! Got chicken wraped in bacon and cheese tonight! Never remember loving food this much!
All my xmas shopping is done, thank god for amazon! Far to easy to spend hundreds!
5 week update - Roller Coaster
This last week has had alot of ups and downs. Monday I went for blood tests as normal everything was fine, then I got a call that evening by Dr Swift saying my creatinine levels were high (158) and could i change a few of my drugs becasue of this I had to go back in tuesday morning first thing for a scan and blood tests if it was bad again i would be in tuesday night for a biopsy on my kidney! All I could think about was my condition was back and I would be back on dialysis again and my life would be back to living of a machine!
The reason for the high levels could be becasue of the Ramipril drug I had been started on, or the prograf level being high also the food I had eaten the night before (roast dinner) also the amount of fluid in your body. So this is what i was hoping for.
We got a call from the Dr tuesday afternoon and she confirmed everything was fine and my level was back down again, and the reason was because of the drugs. But im back in this morning anyway for the usual wed blood tests just hope they are all ok.
6 week update - Its Christmas
So it’s now christmas and six weeks since my transplant, everything seems to have sorted itself out, it must have been the drugs messing up my creatinine results.
If my dad hadn’t kidnely given me a kidney this would have been my seventh month on dialysis! This works out at 14 days hooked to a machine doing nothing! I would definatly of had a fisula which is a vein and artery joined together in your arm so instead of using the neckline they would needles in the vien for the duration of the dialysis. If I hadn’t of had my transplant so quickly I would be on dialysis christmas day! and restricted on all the good food! Went to the cemetary today and everything hit me what I have been through and how close I was to being one of those gravestones, good job I went to the docs before it was to late.
Merry Christmas to you all.
7 week update
I had my normal monday check up, I was a bit worried to see what my levels were going to be as I had eaten so much, but everything was fine so the doc reduced me to only go up monday and friday. So this morning i got a lie in. Also my steriods have been reduced again, and in a few weeks I should be off them completely.
So next thing for me to do is look at start driving, my car hasnt moved in 7 weeks, so hopefully it starts. Then looking at going back to work when the docs say its safe for me to do so.
8 week update
This week has not been as smooth as other weeks, creatinine levels going up. Normally its around 130 then it went to 141, 149, 151 then went up to 161 so I was called in for a emergency blood test which if were worse I would of had to have a biopsy that day! So I waited about 3 hours for the result and then when it came the receptionist told me my levels were coming down and that I could go home (hmm.. not to convinced, so I am worried to see what the result will be friday) . The doctors are not really sure of why its going up, normally its my drugs but this time its not. Creatinine is effected by alot of things, it seems to go up everytime i have a roast dinner or lots of protein but when this is mentioned you get mixed answers. If anyone knows anything about creatinine levels send me mail.
I had my stent removed this week, really not a plesant thing to go through. A stent is a tube which connects the bladder with the new kidney while the tube heals. Once healed theres only one way for it to be taken out and its not very plesant. They put a sheet over you with a hold cut out of, its all a very odd expeirence. Theres a team of 3, the NHS seem to employ people just to try and distact you while the procedure is taking place, the last thing you want to do is tell them about your family while it is happening.
9 week update
Nothing really to report this week, first few days back to work this week, wasnt so bad other then a few people have colds and I wasnt told so have picked up another one. As a transplant patient I have no immune system so I will pick up pretty much everything. Levels are slowly coming down but now that will change as I have another cold so would not be surprised if i get called in for a biopsy during the week.
Next week I get measured up by the NHS for my protection so I can take part in sport, I dont know what they are going to make so I asked my doc and he didnt have any idea what i was talking about! So will be good to see what they have in mind, but i will go in with a few designs of my own for them to look at.
11 week update
21 is the amount of hours I have been in Hospital in the last 3 days. Monday I went for clinic and they wanted a biopsy as they could not work out why my creatinine had gone up by 20pts. So i went back to beacon ward and waited, 4 hours later I was told that they could not get me a bed that day so come back in the morning. The next morning was up at 6.40 to try and battle the traffic and get there on time. This time they were ready for me so had my biospsy then layed for 6 hours on my back to stop any more bleeding. It was not as bad as my last two ive had. My ipod got me through again. So now 4pm i was ready to go home but no. I had to wait around for the results and there has been a slight rejection to my body but it was the smallest grade of rejection a ‘1a’ so they gave a tablets and a drip of a strong steriod. I have to go back for 3 days for the drip which take about an hour to go through which is not to bad. Just a pain having to travel up there as its a 100mile round trip and I cant drive becasue of my biopsy, mum has to take me and take more time off work.Its thursday tomorrow and its my last drip I need and I can get this needle out my hand. Then hopefully all my levels will be back to around 130 mark maybe even better. Then normal clinic on friday so loads of traveling this week.
EDIT : its thursday and I have been in every day so far for a total hours of 25 hours. Im back in tomorrow for clinic which will be another 3/4 hours. Ive had blood taken 6 times, had 1500mg of steriods put in over 3 days. Ive had a canular in for 3 days. Mums driven me a total of 400miles then another 100 tomorrow. Then I will be back in for clinic on monday! busy!
What am I on?
Since finding out I had Kidney problems I have been on alot of tablets to control multiple things. Now I have had my transplant im on even more tablets which mainly include steriods to stop the rejection of the kidney. Lately a lot of people have been asking how many I am taking? what size are they? you get the idea. So I thought I would add a picture of what I am on per day.
Here is what I take daily. I must be very strict on myself to take them and not forget, from stories I have heard about is if you miss your steriod tablets for a day all your levels get bad very quickly. As there is nothing to stop immune system from trying to kill the kidney, so your cells go straight to work on it.
I have 5 blood pressure tablets. Many people dont know that high blood pressure can effect the kidneys long term.
I have 2 antibiotic tablets to stop infections
Antirejection tablets which must be taken at 10am and 10pm without failure.
Steriods which are the red and purple tablets.
Tablet to lower cholesterol.
Of course they never come like this from the doctor you have to sort them all out once a week and this is the mess from empty packaging.
15 week update
Been busy lately with getting my life back so working and excercising and the odd night out. Everything is going well after the rejection been taken down on tablets so only 17 per day now which is fine, much rather take tablets then be on dialysis. I am hoping to pick up my final kidney armour next week then I will review each one and let you know so if you do want to play sport you can pick the right one for you.
My 21st birthday in 4 days and when i look back to my last birthday I had no health problems at all and since late march I have been hospitalised for a total of about a month, had 100s of blood tests had dialysis and a transplant and now got 3 kidneys and quite a few scars to prove it. When I look back and realise how crucial that blood test was in march i am glad my parents pushed me to go. If I hadnt of gone for a blood test I wouldnt be here I would have got to around june when my creatine went from 300 to 600 to 1000 in around a week then it would have been around 1500 then 2000(dead).
I did not know anything about the kidneys untill I found out I had problems since then I have learnt alot about them and how important they are to us. Not many people know they control blood pressure, toxin levels the amount of urine you produce and more.
Other then having probably the best health I will ever get in my life I have got over my fear of needles, I hated the things but since having blood tests nearly everyday you just get used to it.
36 week update
It's been a while since I last updated my transkid site, as it has helped alot of people I thought I should add a recent post. So its its about 8/9 months since my transplant now and I have got over the little bit of rejection I had a few months ago and since then I would have to say that my life is pretty much where it was before I got sick. I am working 'full time' now, i say full time but once I was fit enough to work 5 days a week I was then put down to 4 days a week so im trying to get the odd bit of freelance work to help the money situation but even so with that I went to toronto in may and planning a trip to the big apple in October. The way i see it is I have been sitting around the last year so I might aswell treat myself, only live once and my kidney could fail any time, but i try not to think about that. I have been paintballing twice using my protection, playing regualar hockey, going to gigs, next one is in wales to see lost prophet, planning a camping trip, basically everything a normal 21 year old does except for getting drunk every other night.
Currently I am trying to get my core strength back for the new hockey season, for this I have been in the gym alot, and going for rides and playing a bit of football, need to get my fitness up and loose the slight belly I gained after my transplant.
Basically im feeling great, the tablets are really no issue to me at all, people say you must hate taking them, but they dont understand that taking them is nothing compared with sitting on a machine. Getting a transplant is like passing your driving test - freedom. You can do what you like and go where you like. oh yeh and hospital visits are every 4 weeks, its in and out. which is great.
tablets currently are:
After a blood test in March 08 I was admitted to Hospital and stayed for 11 days, after two biopsy’s they realised I had a condition called FSGS in both my kidneys, which attacks the kidney filters and there's no cure only treatments, which are dialysis transplant or death!. I did not even think there was something like this could happen to me as I am healthy 20 years old and had no health problems in my life.
Unfortunately disease took hold and I deteriorated very quickly. They had to put in an emergency neckline in June to clean my blood, as I was poisoning myself and my toxin levels were seriously high. The next 6 months I was kept alive by a machine, going 3 times a week 4 hours at a time. With all this going on I was still going to work and playing inline hockey and using the gym. This was not going to control my life!
My dad had opted to have test to see if he was a match so he could donate a kidney, after a few months the results were back and he was a match. We had to see a few last people one of which being our surgeon. We now had a date for the transplant to take place 12th November!
We went into St George’s hospital for the transplant to take place. We were both in quite good moods joking around. Wednesday we got into a stockings and gowns, dad went down before me at about 11.30. I was still in the ward when it was 2.30 and i had been told nothing, so was getting a little worried. Then they came and got me. All I remember was talking to a few nice nurses in a small room before going through the theatre doors. Next thing I knew I was awake and I’m my ward was a few tubes stuck in me 5 in total. I thought I would be in a lot of pain but I was actually ok. Worst pain was having a catheter in! All my results were fine and I had all tubes out 2 days later. So for the 1st time in 6 months I don’t have any artificial tubes sticking out of me.
I have been home since Sunday 16th and feeling great. The wound is healing well and can't wait to start getting back to a normal life. I’m now back and forth to the hospital 3 days a week for clinic for blood tests. So far so good but the condition I have has 30/50% chance of reoccurring.
Now that I have been off dialysis for a week I have noticed that it's not a really bad thing, its just an interuption to your day that is not optional, you miss it your going to die! I was lucky to be able to have a laptop, ipod and a few books to keep me entertained during the 4 hours. Also the nurses were amazing at Farnham and kept me entertained.
Now that I have a third kidney I have a new life, which not many people get. I was lucky to get it so quickly but there are people out there which have to be on dialysis for years and years and die before getting a tranplant, but thanks to my dad he's given my life back, which I cant thank him enough for.
I would like to thank so many people, so many I can't mention all the names. Obviously My dad for having the balls to go through all this and risk his life to give me a new life. Big thanks to my mum, who has put on a brave face through all of this, shes driven me everywhere and kept me going. Thanks to all my family for their support. Friends have been great even though some of the time they dont know how to react to me but thats understandable. A huge thank you to all the docors and nurses who have helped me through this, especially the girls in the Beacon ward at st helier hospital who put up with me for so long, Christina ho who has been great with dad and I and our surgen Mr Fonok who did not let us bleed to death on the table.
2 week update
It's now over 2 weeks since my transplant and everything is going great. Since traveling hour and thirty minutes to the hospital monday wednesday and friday mornings I have had only positive news from the doctors.
There's quite a lot of things I need to get used to like drinking 2/3 litres a day which works out to be around 6 days intake when I was on dialysis. Going to the toilet which im not used to, i seem to get up 5 times during the night. Also I need to learn to sleep, lately im sleeping around 4 hours a night, maybe im worried about what the doctors are going to say the next time i see them, or if im going to get a phone call from them saying to come in urgently which has happened in the past.
Im on steriods and I was quite worried with how much I was eating to begin with, but now im now still eating loads (im getting good at cooking a chicken and bacon club) but im losing weight! They had to check my weight twice today, they couldnt beleive i was getting lighter!
My life is slowly coming back, able to do more but still not as much as before mainly because i get a bit sore. But im using my free time to learn a few new skills and catch up on all the great day time TV!
Just have to wait to see what the future brings...
3 week update
Its now just over 3 weeks since my operation and everything is going great. All my test results are fine and my doctor said
"Your an 8.5/10. But no one ever gets a 9 becasue life isnt that good"
Still got the problem of not sleeping, couldnt sleep last night so worked on a website navigation till 2.30 untill I thought that was enough, but then woke up 4.30 and layed there listening to music. My doctors say its a mixture of the drugs im taking. Minor thing i have noticed is I am slightly shakey, again thats due to tablets. These are really small issues I can live with seeing as I now have a functioning kidney.
Transkid site is doing well with 190 unique hits from 8 countries. I have loads of great feedback from people - some are surprised at how open i am with everything others just thanking me for telling my story.
I have writen an article for kidskidneyresearch website, which they will be adding sometime soon. This will help people understand how FSGS effected my life and how things could be for them.
I have been in contact with dragon skin in california about creating custom armor for me, this will enable me to still play hockey. Last week I sent them a template of what i was after and they are currently putting it together for me. If that fails McDavid have made me a padding tshirt, also I have booked an apointment with the NHS to make me something. So hopefully I will be back to hockey in the new season…
4 week update
So its now a month since I was given a kidney from my dad and everything was going great untill today, a few of my levels were up compared to normal so now i have to wait and see if they phone if they do then i will have to go in tommorrow for tests. If i hear nothing then all is good.
There could be a simple reason for the levels being up, it would be due to my new blood pressure tablet, if thats the case then everything is fine and I can stop worrying and look forward to xmas.
This week I have been in contact with dragon skin for my armor and they have quoted me $126 for making my pattern i sent them, also shock doctor have informed me that a designer is working up some concepts for me. I was told by a paintball sales man in Reading to look for lacrosse rib protection, so I have found exactly what im after and it only costs $60! so possibly i will end up buying one of them in the new year aswell.
Since having chicken wings the night before my transplant I seem to be addicted! goujons, bites, wings and breasts all with BBQ sauce. Iceland do awesome BBQ wings for £1.50 and you get loads! Got chicken wraped in bacon and cheese tonight! Never remember loving food this much!
All my xmas shopping is done, thank god for amazon! Far to easy to spend hundreds!
5 week update - Roller Coaster
This last week has had alot of ups and downs. Monday I went for blood tests as normal everything was fine, then I got a call that evening by Dr Swift saying my creatinine levels were high (158) and could i change a few of my drugs becasue of this I had to go back in tuesday morning first thing for a scan and blood tests if it was bad again i would be in tuesday night for a biopsy on my kidney! All I could think about was my condition was back and I would be back on dialysis again and my life would be back to living of a machine!
The reason for the high levels could be becasue of the Ramipril drug I had been started on, or the prograf level being high also the food I had eaten the night before (roast dinner) also the amount of fluid in your body. So this is what i was hoping for.
We got a call from the Dr tuesday afternoon and she confirmed everything was fine and my level was back down again, and the reason was because of the drugs. But im back in this morning anyway for the usual wed blood tests just hope they are all ok.
6 week update - Its Christmas
So it’s now christmas and six weeks since my transplant, everything seems to have sorted itself out, it must have been the drugs messing up my creatinine results.
If my dad hadn’t kidnely given me a kidney this would have been my seventh month on dialysis! This works out at 14 days hooked to a machine doing nothing! I would definatly of had a fisula which is a vein and artery joined together in your arm so instead of using the neckline they would needles in the vien for the duration of the dialysis. If I hadn’t of had my transplant so quickly I would be on dialysis christmas day! and restricted on all the good food! Went to the cemetary today and everything hit me what I have been through and how close I was to being one of those gravestones, good job I went to the docs before it was to late.
Merry Christmas to you all.
7 week update
I had my normal monday check up, I was a bit worried to see what my levels were going to be as I had eaten so much, but everything was fine so the doc reduced me to only go up monday and friday. So this morning i got a lie in. Also my steriods have been reduced again, and in a few weeks I should be off them completely.
So next thing for me to do is look at start driving, my car hasnt moved in 7 weeks, so hopefully it starts. Then looking at going back to work when the docs say its safe for me to do so.
8 week update
This week has not been as smooth as other weeks, creatinine levels going up. Normally its around 130 then it went to 141, 149, 151 then went up to 161 so I was called in for a emergency blood test which if were worse I would of had to have a biopsy that day! So I waited about 3 hours for the result and then when it came the receptionist told me my levels were coming down and that I could go home (hmm.. not to convinced, so I am worried to see what the result will be friday) . The doctors are not really sure of why its going up, normally its my drugs but this time its not. Creatinine is effected by alot of things, it seems to go up everytime i have a roast dinner or lots of protein but when this is mentioned you get mixed answers. If anyone knows anything about creatinine levels send me mail.
I had my stent removed this week, really not a plesant thing to go through. A stent is a tube which connects the bladder with the new kidney while the tube heals. Once healed theres only one way for it to be taken out and its not very plesant. They put a sheet over you with a hold cut out of, its all a very odd expeirence. Theres a team of 3, the NHS seem to employ people just to try and distact you while the procedure is taking place, the last thing you want to do is tell them about your family while it is happening.
9 week update
Nothing really to report this week, first few days back to work this week, wasnt so bad other then a few people have colds and I wasnt told so have picked up another one. As a transplant patient I have no immune system so I will pick up pretty much everything. Levels are slowly coming down but now that will change as I have another cold so would not be surprised if i get called in for a biopsy during the week.
Next week I get measured up by the NHS for my protection so I can take part in sport, I dont know what they are going to make so I asked my doc and he didnt have any idea what i was talking about! So will be good to see what they have in mind, but i will go in with a few designs of my own for them to look at.
11 week update
21 is the amount of hours I have been in Hospital in the last 3 days. Monday I went for clinic and they wanted a biopsy as they could not work out why my creatinine had gone up by 20pts. So i went back to beacon ward and waited, 4 hours later I was told that they could not get me a bed that day so come back in the morning. The next morning was up at 6.40 to try and battle the traffic and get there on time. This time they were ready for me so had my biospsy then layed for 6 hours on my back to stop any more bleeding. It was not as bad as my last two ive had. My ipod got me through again. So now 4pm i was ready to go home but no. I had to wait around for the results and there has been a slight rejection to my body but it was the smallest grade of rejection a ‘1a’ so they gave a tablets and a drip of a strong steriod. I have to go back for 3 days for the drip which take about an hour to go through which is not to bad. Just a pain having to travel up there as its a 100mile round trip and I cant drive becasue of my biopsy, mum has to take me and take more time off work.Its thursday tomorrow and its my last drip I need and I can get this needle out my hand. Then hopefully all my levels will be back to around 130 mark maybe even better. Then normal clinic on friday so loads of traveling this week.
EDIT : its thursday and I have been in every day so far for a total hours of 25 hours. Im back in tomorrow for clinic which will be another 3/4 hours. Ive had blood taken 6 times, had 1500mg of steriods put in over 3 days. Ive had a canular in for 3 days. Mums driven me a total of 400miles then another 100 tomorrow. Then I will be back in for clinic on monday! busy!
What am I on?
Since finding out I had Kidney problems I have been on alot of tablets to control multiple things. Now I have had my transplant im on even more tablets which mainly include steriods to stop the rejection of the kidney. Lately a lot of people have been asking how many I am taking? what size are they? you get the idea. So I thought I would add a picture of what I am on per day.
Here is what I take daily. I must be very strict on myself to take them and not forget, from stories I have heard about is if you miss your steriod tablets for a day all your levels get bad very quickly. As there is nothing to stop immune system from trying to kill the kidney, so your cells go straight to work on it.
I have 5 blood pressure tablets. Many people dont know that high blood pressure can effect the kidneys long term.
I have 2 antibiotic tablets to stop infections
Antirejection tablets which must be taken at 10am and 10pm without failure.
Steriods which are the red and purple tablets.
Tablet to lower cholesterol.
Of course they never come like this from the doctor you have to sort them all out once a week and this is the mess from empty packaging.
15 week update
Been busy lately with getting my life back so working and excercising and the odd night out. Everything is going well after the rejection been taken down on tablets so only 17 per day now which is fine, much rather take tablets then be on dialysis. I am hoping to pick up my final kidney armour next week then I will review each one and let you know so if you do want to play sport you can pick the right one for you.
My 21st birthday in 4 days and when i look back to my last birthday I had no health problems at all and since late march I have been hospitalised for a total of about a month, had 100s of blood tests had dialysis and a transplant and now got 3 kidneys and quite a few scars to prove it. When I look back and realise how crucial that blood test was in march i am glad my parents pushed me to go. If I hadnt of gone for a blood test I wouldnt be here I would have got to around june when my creatine went from 300 to 600 to 1000 in around a week then it would have been around 1500 then 2000(dead).
I did not know anything about the kidneys untill I found out I had problems since then I have learnt alot about them and how important they are to us. Not many people know they control blood pressure, toxin levels the amount of urine you produce and more.
Other then having probably the best health I will ever get in my life I have got over my fear of needles, I hated the things but since having blood tests nearly everyday you just get used to it.
36 week update
It's been a while since I last updated my transkid site, as it has helped alot of people I thought I should add a recent post. So its its about 8/9 months since my transplant now and I have got over the little bit of rejection I had a few months ago and since then I would have to say that my life is pretty much where it was before I got sick. I am working 'full time' now, i say full time but once I was fit enough to work 5 days a week I was then put down to 4 days a week so im trying to get the odd bit of freelance work to help the money situation but even so with that I went to toronto in may and planning a trip to the big apple in October. The way i see it is I have been sitting around the last year so I might aswell treat myself, only live once and my kidney could fail any time, but i try not to think about that. I have been paintballing twice using my protection, playing regualar hockey, going to gigs, next one is in wales to see lost prophet, planning a camping trip, basically everything a normal 21 year old does except for getting drunk every other night.
Currently I am trying to get my core strength back for the new hockey season, for this I have been in the gym alot, and going for rides and playing a bit of football, need to get my fitness up and loose the slight belly I gained after my transplant.
Basically im feeling great, the tablets are really no issue to me at all, people say you must hate taking them, but they dont understand that taking them is nothing compared with sitting on a machine. Getting a transplant is like passing your driving test - freedom. You can do what you like and go where you like. oh yeh and hospital visits are every 4 weeks, its in and out. which is great.
tablets currently are:
- 7mg prograf - 4mg morning 3mg night
- 5mg prednisolone which look like mini smarties
- 10mg ramipril
- 5mg atorvastatin
- 5mg amlodipine
My Neck Line
A lot of people didnt even know I had these in my chest for around 6 months! Most of the time they were taped to my chest becasue I hated them dangling around. This is why I had to stay away from hockey because if it pulled out I would be in trouble!
My Ward
This is the ward I was in for my op and recovery, bit old on the outside but inside was all up to date and some very nice nurses!
Before the op
As I was never going to see my stomach undamaged after my op I thought I would take a picture and share it with you all!
Dads drawing
This was to show what side the kidney was coming out of, simple but effective I guess.
My drawing
Same reason as the previous picture, making sure it goes in the right side.
Kidney Transplant
This is an image of what went on during the transplant! Quite a major thing...
Dad on the mend
Just out of surgery and on the oxygen and all ok.
Me after the op
Me looking a bit special after my op, and hooked up to a few machines and with my pain button in my hand which I used 39 times over the night but know matter how much I pushed it I could feel the catheter!
After the op
This all looks a bit messy and painful but the tube full of blood was a drain taking excess blood from my insides, the white patch was attached by a screw I think and the morphene substitute was put onto that pad. I The drain did'nt work one night and all the excess was coming out and onto my bed. nice!
Blood Drain
This was my drain which took the blood out as I said about in the previous image, it just kept filling up.
My view
All labeled this is what I could see from my bed, at this point no nice nurses were in view.
The damage 5 days on
This was the damage caused by the operation, I did think it would be a lot worse then this but they clearly knew what they were doing.
My Scar
This is just another angle, 5 days after op
My Scar
3 weeks since my operation the scar is looking very clean.
My Scar
36 weeks since my operation and the scar is very clean, and Im building my core strength
