This was the best day of my life! This was the day I had a kidney transplant from my mum! Here is a picture of my mum, who I love very much and who gave me life twice:
Although I do not remember a thing about the time after the op it will be a day I will treasure forever and every year we will have a party to celebrate the life of the new kidney. Let me tell you about the day of the op.
We were admitted to Martha Ward at Guy's Hospital (http://www.hospital.org.uk/) on the Thursday afternoon and we were placed in beds next to each other. That is what we wanted all along but it is usual practice to place patients next to their relatives and donor.
The operation was at 1pm on the Friday. All went well. Mum went to theatre first and I followed on in about half an hour. Mum therefore came back to the ward first about 8pm and I followed an hour later. Suzanne and Dad were on the ward waiting for us to see how we were. It had been a very long wait for them!
The kidney worked straight away, as soon as it was placed inside me and connected up. Live-related transplants have a much higher chance of working straight away because the kidney has not be outside the body too long.
I do not remember much about the first days following the transplant. I came out of theatre with a neckline in, a wound drain, a drip and a catheter. The catheter stayed in for five days and I was so relieved to get rid of it when those five days were up! Mum came out with a catheter and a drip. We both came back connected to a morphine pump which was to help control our pain relief although mum did not get on well with the morphine as it made her sick so they gave her a different pain relief instead.
We slowly began to recover. It takes a while to get over any operation. Each day brought new stuff - tubes were coming out gradually and I was starting to take my anti-rejection drugs orally. Yuck. They tasted horrible. I was originally on Neoral but I could not take them. For a start they smell awful. Before I even opened the packed I was feeling sick, and they are so huge. So we swapped to the medicine and that was much better. I mixed it with orange juice and it was only a small dose compared to the tablets so I was much happier!
Anyway Mum came out of hospital on the following Thursday so she was in less than a week and I came out on the Saturday after. So we were both not in very long. Some people are out even sooner. It all depends on the recovery of the individual patient.
However, my stay on Martha Ward did not end there! I came home on the Saturday and for the first three months you have to go back to Guy's Hospital three times a week for blood tests to check the function of the kidney. They do this by checking your 'creatinine' which can tell you how efficient the kidney is getting rid of waste products. So every Monday, Wednesday and Friday we were expecting to be at Guy's.
We therefore went up the Monday after I got home on the Saturday, had the blood tests etc, and went home. They only ring you if there is bad news so if everything is okay they do not ring you. 6pm Monday evening we get a phone call. Your creatinine has gone high and you need to come back! Great we thought. I had only been home two nights and they wanted me back again. However just for a blood test to re-check the figures so Tuesday came and off we went. We get there and have the bloods done and you have to wait for the results as they were done as an emergency case. We wait an hour and the doctor comes and says can you come into the room please. I instantly thought bad news. He calmly told us that the creatinine had gone high again and that this means rejection of the kidney. I could not believe it. Things were going so well for us both and then the kidney decides to reject. However he could not be sure this is what is was so I had to have a biopsy which is where they insert a needle into the new kidney and take a bit for examination. There was risks with this such as internal bleeding but it was the only way they could find out if the kidney was actually rejecting. This needed to be done as soon as possible so I had to stay in.
I stayed in for four days. I had the biopsy and it showed that there was mild rejection of the kidney. Because of this they put me on a course of very high steroids which went through a needle in my arm. I had this for three days and I came home on the Friday night. During this time I came of the Neoral, my favourite medicine, and swapped to another drug called Tacrolimus which is a new drug and is on trial at the moment. I was told by my local GP the other day that a month's supply of Tacrolimus costs £800! Expensive eh! but cheaper than dialysis! It is meant to prevent rejection better so after my first bout they asked me if I would like to swap and I read all the literature they gave me and it seems the best option.
So I was home again at last. I had the weekend at home and then we were due back on the Monday for routine tests. So off we set. It takes about two hours to get there and back. Dad has been taking us into Luton by car. He goes to work in the morning, stays for a couple of hours, then comes back to pick us up and then takes us to the train station. Otherwise we get a taxi to the town centre and then a bus to the train station.
We went up there and had our bloods done and came home again. I was anxious to find out the results so I rang them. They said the creatinine had gone high again and that I would have to wait till they had to spoke to a doctor to find out what to do next. Half an hour later they ring and say we have to come up tomorrow for emergency blood tests and wait for the results.
Dad took the day of work and we went up in the car. I had the bloods done and then we waited for the results to see if the creatinine had gone up any further. Unfortunately it had gone up to 150 which is really high. After the transplant it had been between 90-100 and since then it has risen slowly. But a creatinine of 120 is fine which is a normal person's creatinine level. I was told that I would be admitted to Martha Ward because I could not go on with a creatinine like this. They said it is probably rejection again but they did my blood pressure and it was really low compared to normal so they weighed me and my weight was down by 3 kilograms so there was also the possibility that I was dry.
We had to wait ages for a bed and finally got one about 6pm. I was told that I would have to have a biopsy tomorrow to see if it is rejection. However in case I am dry I was to go on an intravenous drip over night to see if my creatinine had dropped by morning.
Morning comes, I have my blood and wait. 11am nothing. I keep asking but no one knows. Have to wait for my blood results. They come back and it has gone down. Yippee. Have I escaped the biopsy? We find the doctor and he says it is most probably that I am dry and not rejecting so we will not do the biopsy. I will have to stay in one more night on the drip and see if that makes the creatinine go down even further. It works and it goes down to 123. So I can go home. How long for no one knew!
I escaped the biopsy! I came home Thursday night but we had to go back Friday for blood tests. All went okay and no phone call Thursday night so we had the weekend at home till we had to go back on the Monday.
Since then I have only been up to the hospital as an out-patient and not an in-patient. All has gone really well. The problem the second time round was that I was not drinking enough. You have to drink 500 mls more that you wee out. I was drinking two litres a day but this was not enough. I was told to aim for three to four litres. So this is what I am doing and it seems to be working. I constantly seem to be drinking all day but if that is what I have to do then so be it.
My creatinine dropped to 123 in hospital and went up to 130 on the Friday but they said that this was okay as 130 may be my baseline but since I have been drinking loads it has been going down. It went up to 131 then down to 129 and then it went right down to 118. So it went down 11 notches.
So at the moment things are pretty stable and the kidney is working well. I feel heaps better with lots of energy, more than my mum at the moment. Mum is very sore still at the moment and it will be a few more months before she is better. The operation was worse for her and much bigger so it will take her longer to recover.
Having a kidney from someone you love is the best present you could ever wish for and how do you repay her. There is nothing in comparison which would come even close and thank you does not seem enough. I will always be very grateful to my mum for this new lease of life which she has given me and all the energy which she has given me. When I was on dialysis I used to sleep lots and get very tired easily but now I have lots of energy and do not need to sleep in the day at all. It is brilliant and I wish it could last forever, but I know that it will not but some kidneys do last a long time so I pray that mine does.
Can I just end this part of the website by thanking everybody who sent get well soon messages and cards and gifts to me while we were in hospital. The support was fantastic and it was great to know that so many people were supporting us all over the world. Thank you very much to everybody.
© Claire Ann Stafford 2000