Sidney The Kidney (My experience of kidney failure)

Member Name: AJ26

Product:	My experience of kidney failure
Date:	09/10/05 (377 review reads)
Rating:

Advantages: Not many but there are a few treatment options like dialysis and transplants.

Disadvantages: Many - like sickness, tiredness, having to use a machine or go into hospital, surgery , e.t.c.

I felt it was appropriate to write this review as 3 years ago my husband had a kidney transplant. I know some people might think that as the title of this review is "My experience of kidney failure" then only the person who has had kidney failure should write it. However I feel that if you are a couple or a family and one of you experiences kidney failure then you all go through it together. So I think that qualifies me to write this review.

We affectionally call the kidney Sidney (not very original I know!). I wanted to write this to firstly highlight the need for more organ donors but also for people who make have kidney failure or know someone who does to let them know that there is hope and although it is a stressful time there is hope. I don't want to go into too much of the medical detail as it is quite complicated and there are good websites that explain things so I am going to concentrate mainly on my experience.

I started going out with my husband when I was 21 years old and he was 24. I knew he had some sort of problem with his kidneys and he took medication in the morning and evening. Looking at him you wouldn't have known he had any problems and he felt well in himself. We fell in love very quickly and got engaged just over 4 months after we started going out. Soon after this I graduated from university and started working. We planned to marry the following summer and were excited about planning our new life together. Sometimes just when everything seems to be going great your life gets turned upside down.

My husband used to get followed up by the hospital regularly. This mainly consisted of blood pressure monitoring and blood tests. From this the doctors could tell how well the kidneys were removing the impurities from the blood. The type of renal problem my husband had affected both of his kidneys. They didn't know why he had it but think it was a viral infection. When your body has an infection your antibodies work to fight it, in his case the infection had gone but the body kept fighting itself, this was increasing his blood pressure which in turn was damaging his kidneys and it was a vicious cycle. In some patients the initial virus which causes the problem leaves the body and the kidneys continue to work. However in our case the body kept fighting what it thought was the virus which was destroying the kidneys.

Every time my husband went to the hospital we would be told that the kidney function was deteriorating. We were told that it was likely to continue to deteriorate until he would need to have dialysis and go onto the list to await a transplant. This was quite a shock to us both and deeply upsetting. I felt so helpless, I spend my time working in a hospital helping patients get better but there was nothing I could do to help my own husband. I knew I had to be strong for him but it was hard, I used to cry a lot. My family and friends were very supportive and my faith helped me get through it. My husband and I helped each other, when one was weak the other was strong. We tried to look on the positive side, with renal failure there is so much you can do, dialysis will keep you going until an organ becomes available. There is always someone worse off than yourself so you have to be grateful for what you have.

We got married in 1999 and had a wonderful day sharing it with many friends and family. My husband slowly began to get sicker, the thing with progressive renal failure is that it happens gradually so you're not really aware of how sick you are. I know that may sound strange but if one day you are well and the next you're really sick it's obvious how ill you are. But if you just get sicker bit by bit you don't really realise it. He was still working right up to the day before he had his transplant, he was however being sick more often and tired easily. When he eventually started dialysis and the toxins were removed from his body he realised how ill he had been because within a short space of time he stopped feeling sick and had much more energy.

When the time came for my husband to start dialysis the consultant chatted through the various options. Firstly there is haemodialysis, for this you have to go into hospital, you have a connection into your vein and the machine removes the blood from your body, it passes through the machine where the toxins are filtered out then passes back into your body. This wasn't great for us because firstly you have to go into hospital three times a work, you have to restrict the amount of fluid you take and the time it takes means it's hard to keep a full time job and have time to spend with your family.

Secondly there is what is called Peritoneal Dialysis. There are two forms APD and CAPD. For this you have a tube inserted into the abdominal cavity. Fluid is either pumped into the cavity using a machine or from a bag using gravity. 1 to 3 litres of fluid are used the toxins move into the fluid and the fluid is drained back out into a bag and disposed of down the toilet. The tube is at constant risk of getting infected, so careful hygiene has to be followed.

My husband went in for the initial operation to have the tube fitted. Unfortunately when he returned from theatre, they forgot to put a sterile dressing over the tube. A week or two later he developed an infection, this meant he could not start dialysis. I had to learn how to clean the wound using a sterile technique. It was not a pleasant job and I am a very squeamish person but I did promise in sickness and health. My eczema flared up as I had to use medical soap and alcohol gel to sterilise my hands before doing the dressing. Eventually the infection cleared up and the wound healed so we could start dialysis.

We had a week learning how to use the machine, we had to learn how to correctly wash our hands as any infection can lead to complications, the machine had different setting and we had to record the amount of fluid which entered and left the body. The machine was noisy, it made a churning noise as it pumped fluid round, if he rolled over onto the tube in the night it set off an alarm which usually woke me first then I had to wake him! We both use to wear ear plugs to allow us to get to sleep. When we went on holiday we had to take the machine which transported in a large roller case, the boxes of fluid, special hand scrub, alcohol gel, paper towels. We ended up going with our family so they could help carry the things.

During this time we also went on the list to await a transplant. The best chance you can have for a kidney transplant is to have a living-donor transplant. This is when a close relative donates a kidney, usually this is from a mother, father, brother or a sister however it could be from a more distant relative. A spouse can also donate a kidney. The advantages a living donor transplant has it that the organ starts to deteriorate the minute it is removed from the body, if a person has died the organ may have to travel across the country so its function begins to deteriorate. A living donor can be in the next door theatre so the organ does not deteriorate. We could not have a living donor transplant as my husband is an only child, and his mother and father were not fit enough to donate an organ. They will not consider using a wife's kidney if you have not had a family as when you are pregnant your kidneys are under more stress so having only one could be potentially dangerous.

So we were added to the list. The list works not on a first-come first-served basis but they try to match the donor kidney to the recipient as closely as they can to minimise the chance of any rejection. You have to always be within 2 hours of the hospital and always contactable, they had our home numbers, work and family numbers. It meant we had to have holidays near to home and whenever we went out we had to either have a phone with us or tell someone where we were. I remember phoning my mum to say we were going to be at the cinema, goodness knows what she would have done if we had got a call, imagine if someone had had to walk into the cinema to find us!

I remember the night we got the transplant call so clearly. Earlier that evening my mother-in-law had phoned to say that they had had a power cut (the machine would not have worked if there was a power-cut) I had said to my husband I wish she wouldn't phone late in the evening because you think it's the hospital. We had gone to bed just after 11pm and about 10 mins later the phone rang. We looked at each other and we just knew, my heart was pounding. They said they had an organ which matched and they wanted us to come into the hospital in an hour.

My husband had to disconnect from the machine and we grabbed together the things we thought he would need. We phoned my dad and he came to drive us in. I can honestly say that was the longest night of my life. The doctors did blood tests and checks, then told us that the kidney would not be arriving until the day so we had to wait until then to know if the operation would go ahead. I sat by his bed all night, I was so tired but I couldn't sleep 1) the chair was so uncomfortable and 2) I was so worried about what was going to happen. I remember reading Rosamund Pilchers book "September" because my mother in law had lent it to me.

In the morning we were told that the kidney would arrive early afternoon. I went home to have a shower and try and catch an hour or two of sleep and then returned to hospital. The kidney arrived and was in good condition. It had been flown up from England. They wheeled him down on a trolley and once he was out of view I cried. I was worried what would happen sometimes the kidney can fail as soon as it is transplanted. I went home for the afternoon and my parents tried to help me get through the afternoon. They do not remove the original kidneys but add the other kidney in, so my husband now has 3 kidneys although his original kidneys do not work. He returned from theatre that evening and I went to see him. He was very drowsy and had tubes, drains and monitors. I was used to these working in a hospital but to see them around your own husband is distressing. He spoke a few words to me but to this day doesn't remember me being there. I was told the operation had gone well and the donor organ was an excellent match.

The next day when I went in to visit he was sitting up in a chair for a while, he was feeling remarkably well and had a painkiller pump which he could use whenever he felt sore. He stayed in hospital for a week, he was desperate to get home and the doctors agreed to let him out on the Saturday for the day and then he was discharged on the Sunday. We had to keep going back to the transplant unit every day to have his levels checked to ensure that the body wasn't going to reject the kidney.

Things progressed well then about 6-8 weeks after his transplant on a routine check-up they discovered that he had gone into rejection. He had been taking the anti-rejection drugs (which he has to take for the rest of his life) but they hadn't worked enough. This meant that his body was seeing the kidney as something that shouldn't be there and attacking it with antibodies. He had to have a biopsy of his kidney and a massive dose of steroids. He stayed in hospital for another week then they let him home.

Since then things have improved. His kidney function has stabilised and they are slowly trying to cut down the amount of steroids he is on. He works full-time, is fit and healthy. To look at him you wouldn't know he has had a transplant. He has skin problems due to the steroids and that gets him down as he was never troubled by spots before, but hopefully this will improve once the steroids are reduced. He takes a lot of medication, we keep our pharmacist in business!! Picking up his prescriptions means 1 or 2 carrier bags full!

Life has been stressful and the worry is you never know how long the kidney will last. Some people have had their kidney for years and others have problems within a short space of time. But you can't dwell on that or you would get really depressed. We just take one day at a time and are thankful for what we have. Although we have only been married for 6 years we have been through more than some people have in a lifetime. Our experiences have brought us closer together. We have had stressful times but we have also had so many laughs and have so many more to come. But both of us will never forget the gift of life that someone gave for us, every year we celebrate another year since transplant someone else remembers someone they loved and lost. But that one person has probably given several people the chance of a better quality of life.

I carry a donor card and have done even long before I met my husband. No-one really wants to think about what might happen if they were to have an accident but these things do happen and for your family it's hard to make a decision like that when they are faced with losing you. That's why it's important now to think about what you would like done if the worst should happen. I would encourage you if you want to donate your organs to make sure your family know how you feel, even if you have a donor card your family could refuse to let your organs be used. My husband has told me that should I die then he will make sure my organs are used to help others.

Well that's my story, I hope that reading this made you think about organ donation and how much difference it can make to someone's life.

Summary: If you have kidney failure there is hope, you can have dialysis or go on a transplant list.