My story- It may not be all rosy but it is as it is

One day 8 years or so ago I was looking forward to a first time trip to America. I had never been so far before and it was a once in a lifetime tour of California and the Gold Coast.

I had been having a bit of trouble with fluid retention in my legs so, worried about D.V.T.

I thought I would go to my GP. Well, that was a shock, she said to get some blood tests done and they showed my kidney function was not very good, I had high blood pressure and she wanted to get me referred to a consultant asap.

Well you can imagine my concern when she started saying I cannot go to America as I needed to be seen etc. I managed to agree with her I would still go but do dip tests whilst I was there and if anything changed I would come back. Needless to say I had a great holiday with no problem.

When I got back I had an appointment with a consultant / blood tests etc and was told all about my disease (IGA NEPHROPATHY). For a year or so things remained steady with my creatinine hovering around 400/500 but one year it just started to rise gradually so it was time to look at eventual dialysis. Being a busy and independent person I wanted to hold off for as long as possible and I did. When I was getting so itchy all over day in and out due to the poisons coming out on my skin rather than being absorbed by the kidney I decided enough was enough.

In the hospital I was faced with several options but PD sounded the most flexible to me as I wanted to continue my work. The operation was arranged for my PD cathether to be fitted and some training was given. Once the catheter healed and I was confident in what I was doing, the first delivery arrived. SO much stuff, boxes of fluid, caps, gauze, saline, a heater, clamps etc but I managed to fit most of it in one cupboard. Work had kindly arranged for the first aid room to be available to me every lunchtime and so one bag before work, one at lunchtime and two in the evening and that was me done. It took me a while to get used to the fluid in my peritoneum. I felt bloated and heavy for a few weeks until I got used to the regime and things were tweaked slightly. So that was me done, PD regime in place I continued to work and play and apart from being tired and cold, plus the moonface from being put on prednisolone, things were better.

As things settled I started to take it with me, I dialysed at friends houses, I even went on a caravan holiday and that all went smoothly so I booked a holiday in my brother in laws villa in Spain. I ordered everything in advance with the PD unit and delivery was arranged. I just had to take one bag of fluid, some clamps and clips and the heater.

A few months before I went to Spain I got a bout of peritonitis, not pleasant at all, so painful but once in hospital I was sorted out and clear,

On arrival in Spain the order was a few hours late but it did arrive eventually and I had a great holiday dialysing on the balcony. Sadly the last few days of my holiday I caught peritorious again and so after calls to the duty pd nurse and some advice we drove many miles to alicante hospital where after trying to find the hospital we went into a@e. We had been given an emergency contact if falling ill in Spain but it was not that easy. It was late at night, we did not speak Spanish and they didn't understand peritonitis, dialysis or anything I was saying. It was actually very scary and we ended up coming home as we managed to gather the doctor we needed was not in at night.

The next day we left early armed with an empty bag of PD fluid which has the ingredients in many languages, which we thought may help. Of course we now had the down side of rush hour traffic in Alicante and combined with driving on the opposite side of the road and not knowing the layout we ended up having an accident and a moped driver came down the side of our hire car. So here I was in agony from the peritonitis, not that far from the hospital but we had to wait for the police. I had to use my mobile to call a colleague in England who was Spanish and he relayed from the moped drivers to us and to the police. After an hour or so it was all cleared up, no-one was hurt and we went on our way to the hospital. We managed to track down the English speaking doctor and eventually got admitted to a ward.

Once in my room, it was very comfortable and I was well looked after. They did do things slightly different connection wise but otherwise it was the same PD I was used to. There was however one other problem, as if we had not had enough. Unusually for me I had left my E11 form at home (so important that you take this with you), so having hardly any phone charge left I had to phone the UK and get a fax of my card sent to the hospital to avoid paying for my stay. After a couple of days I was released and had the last few days at the villa enjoying the holiday.

Back home in England sadly I got another bout of peritonitis so I ended up having the tube removed as it was clearly infected on the PD catheter itself and I had a temporary neck line fitted whist the new PD catheter they fitted on the other side was healing.

I had haemo through my neck line for about 6 weeks or so and got on fine with that, if anything it was nice to lose the fluid from the PD treatment.

Once back on PD I was soon able to have an APD machine and after some training and restocking of even more stuff, I started APD. Just having to dialyse over night and nothing during the day gave me so much more freedom. Okay it took a while to get used to not rolling over on the lines and kinking them, or the odd alarm when the system failed or needed resetting but I did find it much better. I even managed to take the machine with me on weekends away etc. It had its own carrying suitcase. The only cautionary tale I would say is remember your clamps!! if you leave them open by mistake there will a very large wet patch on your carpets!!!

Anyway to bring the story more up to date- one morning at around 6am I received a call from the transplant unit- they had a kidney for me. After rushing around to get ready we turned up at QA Portsmouth and had the necessary blood tests and after 8 or so hours of waiting we received the news that it was all go. I received my new kidney from a cadaveric donor in February 2008 and within a week I was leaving hospital and on route home with my new addition who I called Colin (after Colin Firth a favourite actor). One the whole life as a transplant patient was better, I had more freedom, more energy and could do more things, plus no diet restriction ( I did go rather mad on chocolate for a while) but there are / were side affects due to the tablets - hair growth and acne being two major factors and I have had other troubles since, not everyone suffers with side affects, it depends on the person. Also it depends on how ill and unable to do things you were pre- transplant as to how much better you feel afterwards. Overall though it is the best form of treatment for your quality of life and longeivity of life.

Sadly I had a couple of urine infections last year that caused a mild rejection of my kidney so my creatinine has been hovering around the 300 mark and I am now back on the transplant list again, luckily not at the moment needing any dialysis.

So that is my story to date ..

10 Replies

  • Now you have left us all hanging !!!!!!:-)

  • Just completed our first trip with the NxStage, warming plate and bagged dialysate............only one session over the four days but everything went well and the hotel staff couldn't have been more helpful both in providing assistance with getting the machine to and from the car and to facilitating using our room as a temporary renal ward. We will certainly be trying this again for a longer break but will need to have dialysate delivered to our destination as the boxes take up too much space in the car with the machine as well.Great to have some freedom back !

  • excellent news Mike

  • You were very lucky that they accepted a FAX of your card. Close call !!!!!!

  • How long has your creatinine been 300 and do you have any idea of how long you can go until the enevitable happens ??

  • At least 6 months Linda and as long as results remain steady there are no plans at present

  • Chin up my lovely, hoping to hear you get your new transplant soon...x

  • Hi I too had an apd machine but I suffered too with peritonitis :( BUT i consider myself EXTREMELY lucky to have had a transplant 12 yrs ago and am still fit and well with a creatinine of around 150 :0) I have put on about 3 stone but who cares I'M ALIVE !!!!

    really hope they find you a transplant soon xx

  • brilliant to hear how well your doing continued good health

  • found your story very interesting and i too have had similiar experiences ...........i decided to have a tenkoff cathetar inserted to continue my career on P.D. sadly i contracted Peritonitis on my first exchange had to be hospitalised after much soul serching and discussion with my husband and adult children decided to go for Haemodialysis and have a temporary line as i waited for my newly created fistula to mature . this decision changed my life i had to medically retire and i have been on haemo for over 4 years now ...............on transplant list over 3 years i am very busy with dialysis and looking after my mum who has dementia and being doting grandma to my two small grandchildren i have a wonderful husband who helps me with all aspects of my life i reasontly had a parathroid surgery which has had a very dramatic effect on my life it has enabled me to walk without a walking stick and i am not in a fraction of the pain i was. soooooooooooooo looking forward to my transplant fingers crossed it will be soon ,,,,,hope you are fortunate to get another kidney keep well .

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