WARNING: This post maybe tough for some people to read but i don't feel I'd be doing this blog justice, if I didn't talk about this.
The decision to donate was always an emotional one for me, after all my big brother was ill. There was never a question in my mind that this was the right thing to do. The question was, was I strong enough to go through it?
There were definitely times when i had a wobble and didn't think i could. Mainly because i didn't think I'd be able to cope with the ramifications if it didn't work or worse yet my brother didn't make it. These thoughts were at times too much bear and would often reduce me to tears. That utter debilitating fear of failure and at a really high price!! I was seeing the renal counsellor and this was a topic that we discussed at length. I tried desperately to wrap my head around the concept that it wouldn't be me or my kidney that would fail, it could be any number of things, the surgeon mucks it up, my brothers ill body rejects my kidney, etc, etc. It took a long time for me to come round to this way of thinking, but it still felt wrong to place blame at anyone elses door other than my own. Thankfully, the closer we got to K-day the less this bothered me. Thoughts of surgery now consumed my mind.
I was really scared, after all this wasn't a mere tonsillectomy, this was major surgery. This was scary stuff. I was having surgery that I didn't need to hopefully give my brother and his family another bite of the cherry. It was a massive cause of stress for me and I also knew my brother was scared. So I felt it important to show him I was strong, positive and not scared. He needed other peoples strength and positivity to draw on to help bolster his own. That was my thought anyway. His wife, myself and my brother, were this little threesome, holding each other up and keeping each other strong and positive. Doing our best to keep the whole thing as lighthearted as was possible. My brother is a very lucky man to have such an amazing woman at his side. I am in awe of her strength and positivity. A truly wonderful human being.
My big brother is eleven years older than me. I've always been the annoying baby sister that got on his nerves when he was trying to read or do his homework, or steal his CDs. He left the family home quite young to join the Navy, so missed a lot of my growing up and i guess we grew apart and weren't hugely close. But i always looked up to him and my other brother. They were and still are my heroes!! This whole process has brought he and I much closer together and it's wonderful to feel that kind of sibling closeness. We text almost every day and the banter is better than ever!! To see the sparkle in his eyes and the return of healthy colour to his face, warms my heart. I can't describe the feeling.
I did a lot of reading before the procedure, for the blog and for my own interest. I came across an article about donor post transplant depression. It was very interesting but I couldn't understand why someone would feel depressed about having just done the most amazing thing a person can do. I now understand it a little better. The best way i can describe it, is Christmas. There is this huge build up to this one special day, the day arrives it's wonderful. Everyone has fun opening gifts, stuffing their faces and getting a tad merry. Then it's over as soon as it begun and all you are left with is stuff and left over food.
After the transplant, all the once split focus switches solely to the recipient and as well it should. They are the sick one after all. The donor is left feeling like they have been sidelined or forgotten about. It sounds like an attention thing, but it really isn't. The donor just had major surgery too and while you are praised for your bravery and thanked, people forget to ask how you are? It's difficult to explain. For me, it started when my brother showed signs of rejection, I wept in my hospital bed, I was petrified but I couldn't show him that. I was so angry that this was happening, I was scared that all this had been for nothing. And i was pissed off that I felt i had nobody that would understand to confide in. Then as my visitors thinned and discharge day came round, I was happy to go home, but the feelings of being forgotten about didn't stop. Now, don't get me wrong, my brother and his wife had been amazing and I knew they were there for me but they had their own stuff going on. My folks were caring and considerate and I have a great network of friends to support me. I don't know what my expectations were, it certainly wasn't statues and sky writing, i just didn't expect so little.
Now I'm sure this makes me sound like an attention hungry, self centered person. That is not the case. I guess when people don't see you as being sick they don't think you are. I suppose you feel a bit lost afterwards, because your part is over now and you don't quite know what your role is now or even if you have one. That's the best way I can think to describe it. i do know that whenever I see my brother all those feelings just melt away, because I look at him and how well he is doing and can't help but smile and fill up with pride for my brother, my kidney and I. The End.
Saturday, 8 March 2014
Friday, 7 March 2014
My Brothers side
My brother was admitted to Guys Hospital on the 11th (the day before surgery). He had to have a line fitted in his neck, which he later discovered, went down to his heart!! This line would be used for the Plasma exchange treatment. What the hell is plasma exchange, I hear you cry? well, my friends let me tell you a story....
Your blood is made up of red and white cells and platelets (don't ask me what they are) these are are all carried around in this fluid called plasma. The plasma can be separated from your blood, removed and replaced. This is called Plasma exchange. Your plasma can only be replaced with either fresh donor plasma or human albumin solution, which is the liquid part of the plasma obtained by processing the fresh plasma.
The function of plasma is to carry blood cells, (the red & white cells and platelets) and various antibodies, proteins etc, etc around your body. Plasma exchange is usually carried out when there is a problem caused by abnormal anti bodies or proteins in your plasma. Which was kind of the case here, as we were having an ABO incompatible transplant. Meaning my brother and I aren't a blood match, so they needed to bring his anti body count down to make the incompatible transplant more viable. As antibodies, which normally help to protect you from infection, can and will attack your own or foreign cells. Which is obviously a bad thing.
So they hooked my brother up to this big machine called a Blood Cell Separator. This machine separates the blood into it's various parts. It sperarates and removes the plasma portion of your blood and gives you back replacement plasma. The remaining parts of your blood including the red and white cells are returned to you during the treatment. This process takes 2-3 hours!!
So, the next day, K-day! The doctors took blood samples from my brother, to make sure the plasma exchnage had worked as intended. It hadn't, it messed up his levels, so he then had to have a blood transfusion via a drip, to try and even things out. This made his potassium levels too high, which is bad. So then he had to go on Dialysis for 2 hours to bring the potassium down. This was what caused the hold up in the surgery time.
My brother went down to surgery about an hour after me, i think. The timings of everything are still bit of an unknown, as it was all too emotional to be watching the clock. He had the same procedure as me pretty much, in the anesthesia room. His surgeon Nazim Mamode, came to see him just before, to make sure my brother was ok. My brother said, "I'm good, just dont kill me!"
As mentioned in my previous blog, My brother was back on the ward, after a few more tests at about. 12:45am.
My brother had the same things as me, he had a catheter in his winky (hehe), a wound drain, a massive bag of IV fluid and an IV drug clicker thingy, although he had Fentanyl in his, not morphine, as morphine is bad for renal patients. If you at all squemish, don't look at the next pic.... Look at this for a wound.
It's important to keep the new kidney well hydrated so my brother was tasked with the job of drinking 3 litres of fluid per day!! Way more than the recommended daily allowance of 8 glasses!! By the third day, he was starting to show some mild symptoms of rejection. His creatinine had gone up from 200 post transplant to 235.
Creatinine, is a natural waste product from the kidney, it's an indicator of how well the kidney is functioning. In a healthy person, your creatinine level in anything between 60 and 110. So, pre-transplant he was at something like 400!! The Doctors began a process of elimination, for the rise in his creatiinine level. The first was to check how hydrated he was as dehydration can cause a rise in the levels, this was fine. Next up was a scan, to see if the cause could be surgical. Had the kidney been plumbed in correctly was there a surgical issue. Nope, that was fine too. They tested his levels again and they had gone up to 253. Not a good sign at all. I was now getting very edgy! The one aspect of this whole thing that I had been dreading, looked like it could be happening. I'm not gonna lie, it was tough for me to stay positive.
The next step was a kidney biopsy! Where they basically fired a gun with a needle on it, directly into his wound and into MY kidney, to take a small piece of the tissue. They did this 6 times!! He then had to lie flat and very still for about 6 hours, to avoid rupturing his new kidney.
The biopsy revealed that there was some rejection happening, so he was put on a 3 day course of strong steroids and given a lot of fluid. 5 litres a day to be exact. His weight went up from 93.9kg to over 102kgs in just 3 days!!
He was finally discharged on the 22nd Feb. Where it would seem he has gone from strength to strength. He was supposed to visit Guy's 3 times a week for the next 2 months, but they are so happy with his progress, he only has to go twice a week now. His creatinine level is 151 and the kidney, Lucy, that I gave him, was functioning at 46% in my body and it is functioning at 44% in him!! Good ole Lucy!! I knew I had good organs!!
This isn't the end of the tale though, he still has a way to go, the next 2 months are important. However, if he keeps going the way he is, everything should be just fine.
He just sent me a picture of his wound as it is now, some 3+ weeks later........
Your blood is made up of red and white cells and platelets (don't ask me what they are) these are are all carried around in this fluid called plasma. The plasma can be separated from your blood, removed and replaced. This is called Plasma exchange. Your plasma can only be replaced with either fresh donor plasma or human albumin solution, which is the liquid part of the plasma obtained by processing the fresh plasma.
The function of plasma is to carry blood cells, (the red & white cells and platelets) and various antibodies, proteins etc, etc around your body. Plasma exchange is usually carried out when there is a problem caused by abnormal anti bodies or proteins in your plasma. Which was kind of the case here, as we were having an ABO incompatible transplant. Meaning my brother and I aren't a blood match, so they needed to bring his anti body count down to make the incompatible transplant more viable. As antibodies, which normally help to protect you from infection, can and will attack your own or foreign cells. Which is obviously a bad thing.
So they hooked my brother up to this big machine called a Blood Cell Separator. This machine separates the blood into it's various parts. It sperarates and removes the plasma portion of your blood and gives you back replacement plasma. The remaining parts of your blood including the red and white cells are returned to you during the treatment. This process takes 2-3 hours!!
So, the next day, K-day! The doctors took blood samples from my brother, to make sure the plasma exchnage had worked as intended. It hadn't, it messed up his levels, so he then had to have a blood transfusion via a drip, to try and even things out. This made his potassium levels too high, which is bad. So then he had to go on Dialysis for 2 hours to bring the potassium down. This was what caused the hold up in the surgery time.
My brother went down to surgery about an hour after me, i think. The timings of everything are still bit of an unknown, as it was all too emotional to be watching the clock. He had the same procedure as me pretty much, in the anesthesia room. His surgeon Nazim Mamode, came to see him just before, to make sure my brother was ok. My brother said, "I'm good, just dont kill me!"
As mentioned in my previous blog, My brother was back on the ward, after a few more tests at about. 12:45am.
My brother had the same things as me, he had a catheter in his winky (hehe), a wound drain, a massive bag of IV fluid and an IV drug clicker thingy, although he had Fentanyl in his, not morphine, as morphine is bad for renal patients. If you at all squemish, don't look at the next pic.... Look at this for a wound.
It's important to keep the new kidney well hydrated so my brother was tasked with the job of drinking 3 litres of fluid per day!! Way more than the recommended daily allowance of 8 glasses!! By the third day, he was starting to show some mild symptoms of rejection. His creatinine had gone up from 200 post transplant to 235.
Creatinine, is a natural waste product from the kidney, it's an indicator of how well the kidney is functioning. In a healthy person, your creatinine level in anything between 60 and 110. So, pre-transplant he was at something like 400!! The Doctors began a process of elimination, for the rise in his creatiinine level. The first was to check how hydrated he was as dehydration can cause a rise in the levels, this was fine. Next up was a scan, to see if the cause could be surgical. Had the kidney been plumbed in correctly was there a surgical issue. Nope, that was fine too. They tested his levels again and they had gone up to 253. Not a good sign at all. I was now getting very edgy! The one aspect of this whole thing that I had been dreading, looked like it could be happening. I'm not gonna lie, it was tough for me to stay positive.
The next step was a kidney biopsy! Where they basically fired a gun with a needle on it, directly into his wound and into MY kidney, to take a small piece of the tissue. They did this 6 times!! He then had to lie flat and very still for about 6 hours, to avoid rupturing his new kidney.
The biopsy revealed that there was some rejection happening, so he was put on a 3 day course of strong steroids and given a lot of fluid. 5 litres a day to be exact. His weight went up from 93.9kg to over 102kgs in just 3 days!!
He was finally discharged on the 22nd Feb. Where it would seem he has gone from strength to strength. He was supposed to visit Guy's 3 times a week for the next 2 months, but they are so happy with his progress, he only has to go twice a week now. His creatinine level is 151 and the kidney, Lucy, that I gave him, was functioning at 46% in my body and it is functioning at 44% in him!! Good ole Lucy!! I knew I had good organs!!
This isn't the end of the tale though, he still has a way to go, the next 2 months are important. However, if he keeps going the way he is, everything should be just fine.
He just sent me a picture of his wound as it is now, some 3+ weeks later........
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