Personal Glimpses

We are asking Swindon patients to write a short piece on their experiences as a kidney patient. We are interested in haemodialysis patients, PD patients, transplanted patients and relatives or other people who are involved in the treatment of kidney failure. It is hoped that this information will be useful to new patients or maybe you are just interested in seeing how other patients manage. There is a useful glossary here.

If you have an article you would like added please pass it to Belinda Robinson via the nurses or Carole or .
You do not need to add your name and no names will be put on the website. We reserve the right to edit any article as necessary.

If you are a prospective patient or carer who has concerns about the future please contact who will be happy to help or point you towards someone who can. You don't need to feel alone in this - as you will see, many other people are in similar situations...

I was on haemodialysis for 9 years and on the transplant list for a year - the surgeons told me I was too big to be operated on (I prefer 'pleasantly plump') and that I had to lose weight before I could go on the list. Well, with a variety of neck lines, leg lines and tesio lines, one fistula, one graft and eventually a bovine fistula (which I can tell a lot of stories about!) I settled down to dialysis thinking that I'd never get onto 'the list'. Then, last year, a surgeon from America said he would be willing to operate on me as he is used to operating on 'large' people - so there it was, I was on the transplant list!

For the first few weeks (if I'm honest, months) I wondered whether it was the call every time the phone rang and was always disappointed, so after a while I just forgot about it. On May 3rd at 11:30pm the phone rang, I thought it was a friend phoning for a chat and as I was just going to bed I didn't answer it. It rang again and I thought I'd better answer it in case it was something important, but when I got to the phone the caller hung up. Then it rang again - it was my friend saying Oxford was trying to contact me and I should wait by the phone. As soon as I hung up it rang again and a voice said "Julie, we have a kidney for you". I immediately said " Yeah right!" - but the transplant co-ordinator asked if there was someone with me and I realised it was real. After the conversation I went to my daughter and phoned everyone I could think of. The feelings going through me were unbelievable; first there was denial, then there was 'OH MY GOD' panic, then came the tears and finally hysterical laughter.

I made my way to the Churchill with my daughter and arrived at 1:30am on 4th May. They did all the blood tests and because I'd had dialysis that day I didn't need dialysis again so there was just a wait to see if I was a match. Soon the surgeon came to see me to explain some things, then the anaesthetist came down and explained some more things. I still didn't realise I was actually going to have the operation. It wasn't until the anaesthetist said "I'll see you up there" that it sank in - I actually did a little jig!

The operation went smoothly. When I woke up, yes, I was a bit sore from the site but the drugs helped A LOT and the most amazing thing was that I did feel better within myself and even my colour was losing the yellowy look. I was in a room with en-suite toilet and was allowed to drink what I wanted. And you know what? I didn't want to! All the time on dialysis I was told off plenty of times for being overloaded with fluid but now, when told to go ahead I didn't want to! But for the sake of the new kidney I had to force myself to drink at least 2 litres a day, with the output being measured frequently. After the first few days I was out of bed, yes it was painful trying to stand up straight but I managed it. Then for the first time in 9 years I actually went to toilet - Woohoo! Now I can't stop :-)

I was suprised how fast things got better. The first thing I did when I got home was make myself a banana mashed on toast with a sprinkle of brown sugar on it. I can truthfully say that I've never tasted anything so delicious as that first bite of banana on toast - 5 months on I'm now sick of bananas! I had to have dialysis a couple of times as the kidney was sleepy but it soon woke up. I had clinic appointments at Oxford for the first couple of months then started going to Swindon clinic every two weeks - it's great to catch up with all the gossip.

After being on dialysis for 9 years, going to hospital 3 times a week and dialysing for 4 ^1/2 hours became such a routine - now I only have to go every second Monday for blood tests and clinic every second Wednesday - I have to find something to do will all my free time. I do miss the patients and the nurses, I feel that we became a tiny family, but at least I get to see them from time to time.

Well, the kidney is working fine, I have no complaints. I'm feeling better, stronger and healthier than I have done in years and I'm so glad that I answered that phone call!!

October 2008

I had a kidney transplant in April. It seems an age ago that I received the phone call at 4:50am and found myself in a spin getting ready to go to the Churchill Hospital with my partner, for my transplant. I had been on haemodialysis 4 years and on the list for about 3 years.

At the Tranplant Ward I had 15 phials of blood taken, an ECG and chest x-ray then a long wait while the bloods were cross-matched, etc. At 10:30 I went for my 'final' dialysis to make sure I was as healthy as possible for the operation. I was starving and desperate for a drink but the op was planned for the afternoon so I couldn't have anything. As it turned out I didn't go down for the operation until 11:00pm so I was put on a drip to give me some fluid back and by that stage I was so tired I was just letting things happen round me!

The operation took 2 hours. I was aware of being back in my single room (with en suite bathroom and toilet - much appreciated!) in the Transplant ward at about lunchtime the next day and was feeling pretty well, the morphine and oxygen were a big help! Water input (lots of it) and output was measured continuously and within a day I felt well enough to sit up but was extremely tired and slept most of the time.

Unfortunately my new kidney was still asleep so I needed another month of dialysis sessions and had to return to the renal diet. I was in hospital for 10 days. Once home I had to return to the Churchill clinic every other day, which was exhausting and had to await blood test results - each time dreading that I would need further dialysis, albeit usually for less than 4 hours. After a few weeks I needed a blood transfusion as the kidney wasn't producing the red blood cells and my EPO injections had stopped - these have now started again.

I found this time very disheartening and although I had been warned of such an outcome it was one of those things I thought 'couldn't happen to me' so it was a big shock and very upsetting. I am still on the renal diet now (though slightly relaxed) but haven't had dialysis for a couple of months so things are definitely improving and as everyone keeps telling me, "just give it time", but the last 3 months have felt like years!

I was also on 5 different types of pills but these reduce throughout the post-op months. After about a month my clinic appointments were moved to weekly at Swindon - which was a huge relief and it was lovely to see my fellow patients and the Swindon dialysis nurses again.

All the staff warn me that I will have to wait a year to see how the kidney will eventually function, but it's a stressful time when you can't help thinking that a transplant is the 'cure'. I'm now having fortnightly blood tests and Swindon clinic appointments - each time hoping that the creatnine and potassium results show an improvement and look forward to the day when I am told that I have NO RESTRICTED DIET.

July 2008

Update on the above:
My new kidney has now been with me for nearly 7 months and I am feeling so much better - in fact I feel normal again! I returned to work 3 months ago and am back to full-time hours next week. I eat almost anything I want and am just a little bit careful with high potassium foods. I certainly want to eat everything (I never had any appetite before) and have put on 5kg (which is a good thing).

Blood tests and clinic appointments are now monthly and my kidney function improves each time I get my results. I am now only taking 2 different types of tablet - both immunosuppressants. The clinics are a good place to talk to fellow-transplant recipients about their experiences and it's always good to catch up with the nurses and HD patients.

October 2008

My kidney problems started in 2001, with swollen ankles and legs. After many tests I was diagnosed with Nephrotic Syndrome. For almost two years I attended clinic at the Churchill Hospital Oxford trying to cure my illness with different drugs (drugs which had proved successful with many patients in the U.S. with similar symptoms to my own). I tried anything to avoid having to dialyse.
 
The initial shock when told you have kidney failure is quite amazing – you can’t believe what is happening to you, especially if no-one in your family has ever suffered or you’ve always regarded yourself as a healthy person.

My kidneys at the time were partially working but the water retention was increasing, causing blisters to appear on my feet which “seeped water” continually. I took water tablets which made me urinate many litres of urine a day. I became very tired and lethargic taking ages to wash and dress myself and hardly able to climb the stairs without pulling myself up with the help of the stair rail. Eventually, having become so heavy and so ill I was rushed to Oxford to have a neckline inserted and a number of litres of fluid taken off straight away through the dialysis machine. I later had a tesio line inserted , followed by a fistula in my arm.

I’ve been receiving haemodialysis treatment for three and a half years at Swindon and have been on the transplant list for one and a half years. Today, through dialysis, quality of life is far better than those earlier years.

Most patients experience lots of different emotions – feelings of anger, fear, dread, self-pity but you come through it all. My advice to new and worried patients would be don’t isolate yourself, talk to other patients, read literature to understand more, ask Doctors questions, join your local kidney patients association who provide support in many ways and remember you’re being looked after by a professional team of Consultants, Doctors, Nurses, Dieticians and Patient Support Manager.

September 2007

I have needed treatment for nearly 2 years, having had severe shortness of breath when doing anything slightly strenuous. Since treatment began I am all together fitter and well able to go about my one man business....selling and servicing cash registers and scales.

At first we used peritoneal dialysis at home, and it was disastrous, probably because the apparatus in my abdomen was kinked. Not a single night passed without alarms and interruptions...this went on for 3 months.

After a second bout of peritonitis I was transferred to haemodialysis using a pair of tubes inserted in my chest. This was much more successful, but necessitated a 6-hour trip to and from Churchill Hospital, Oxford.

In spring this year a bed became available in Swindon, just 15 minutes from home. I dialyse there 3 times a week, and the staff, as at Oxford, are exemplary, friendly and informative.

I now have a fistula for access, and may well try home haemodialysis in the near future. The parking arrangement is cuckoo, requiring a ticket every time even with a permit. No use of mobile 'phones is awkward and it seems strange that internet access is unavailable. However the cup of tea is fresh and hot, served in china and accompanied by fresh sandwiches and biscuits....at tax payers' expense. T.V. is available 99% of the time, also gratis.

Because of the noise of the machines and the way they are positioned there is not usually conversation between patients, but we greet each other on arrival and departure.

We look forward and pray regularly as a family that my kidney function will be restored....and I'll be sure to let you know when it occurs.

September 2007

Although kidney problems have been with me since childhood it was still a shock when in 2003 it was described as Chronic Kidney Failure and that a kidney transplant was the future. Several relatives offered to be donors but they all belong to a different blood group from me, so could not be considered at that time. This was a bit of a setback and my consultant started talking about dialysis. The idea of haemodialysis was frightening - too many needles - so I was hoping to have peritoneal dialysis. However after all the tests, talks and check-ups I was told that PD wouldn't be suitable due to too much scarring from previous operations.

In August 2004 I changed my job to a less hectic position as I was so pre-occupied and lethargic that I found I was unable to concentrate. My new job enabled me to work from home, which was a huge help. By September my kidney function had rapidly declined, along with my appetite, so I felt very ill. My consultant told me that I would need a tesio line inserted in my chest the following week for immediate haemodialysis access. I had my first dialysis session on October 9th 2004 and the experience was nowhere near as bad as I had expected. I was back to work within a couple of months, working from home on dialysis days and feeling much better.

I now have a fistula (like a big vein) in my arm where the two needles are inserted each 4-hour session. I don't find it to be a huge problem, it doesn't make me feel ill but it is time-consuming and boring and there's no escape! Unfortunately there is no internet access at Swindon, but I often work offline on my laptop or watch a DVD.

I have been on the transplant list for 2 years now, hoping the phone will ring day or night calling me to the Churchill to see if a donor kidney is suitable. I should stay within 2 hours of the Churchill or can be temporarily removed from the list if I wish to go away - I find this is the most restrictive thing about being a kidney patient. I have so far had two calls but on both occasions it was decided that another recipient would be a better match, so I was sent home.

My partner and I are now going through the 'paired donor scheme' but I'm hoping that I will get a successful transplant call before this process is complete!

September 2007