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Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: mikol on August 31, 2007, 03:07:32 PM

Title: my story, my book
Post by: mikol on August 31, 2007, 03:07:32 PM
Hello,
 

Below is a short article outlining my experiences. I apparently have one of the best functioning transplants in the unit. I received this kidney over 17 years ago and it is still going strong. ( the average life of a transplant is half that) . The last paragraph explains i have written a book that i am trying to get published but I can send a copy to anyone who emails me.
 
 

 
“PASSING FAILURE” – Michael O’Sullivan –
 
When I explained from the back of the lecture room that the over head projector image may need to be enlarged slightly, the lecturer walked to where I was seated, turned around, and suggested in the nicest possible way that I'd better get my eyes tested.

Chronic renal failure is like that: it slowly creeps up on you. You don't notice any thing at first but then you discover people around you are having no problems with the things you didn't know you were. It then dawns on you that the things you had been able to achieve before are no longer possible.

Years earlier I had been diagnosed as having a condition. My Mother and I had Polycystic kidneys, which is: "the most common genetic, life threatening disease affecting an estimated 12.5 million people world wide. In fact, PKD (Polycystic Kidney Disease) affects more people than cystic fibrosis, muscular dystrophy, haemophilia, Down Syndrome and sickle cell anaemia combined". Quoted from a website dedicated   to the condition.
www.pkdcure.org

In the second year of my law degree the frequency of my check ups increased.  Blood and urine test results indicated my kidneys were failing. I was put on blood pressure and iron tablets; given a low protein diet and told to drink a lot so as to regularly flush toxins out of my body that my kidneys were no longer able to do.
 
Any of the following symptoms on their own would not be indicative of renal failure.
A general feeling of tiredness all the time; shortness of breath, pale skin, irritability, loss of appetite, lack of libido, nausea, vomiting, itchy skin, poor concentration, leg cramps, restless legs, swollen hands or ankles, poor sleeping, headaches, puffiness around the eyes, regular metallic taste in the mouth, changes in frequency passing water and increased thirst. The first six are the direct result of anaemia generally. Having renal failure doesn't mean you will always have a full house of such symptoms and the degree of each varies between patients. Maybe we can throw in deterioration in eyesight.

I was already experiencing a fair few of these and was working on adding a few more to my collection in the coming months. I was now in the third year of my law degree. I had to have fistula made in my arm. This is where
an artery is joined to a vein so that you can go on a kidney machine and blood can leave and return to your body at a fast rate.

A month before my law degree final exams were to begin I asked at my now regular hospital out patient appointment how long my kidneys would last. I was told about a month. The lecturers, now fully aware of my
condition, offered me an agroegat degree. This is an ordinary one based on
course work as opposed to an honours degree requiring you to pass the exams and, unlike the agroegat, take into account a dissertation I had been working on
during the year. I refused even though I was warned that if I failed the exam I would not then be offered the agroegat degree.

On the week of the exams I began to get severe headaches when I awoke. My GP suggested that every morning before each exam he record my blood pressure as possible evidence. For what, neither of us really knew but it couldn't do any harm. It was high and my drug dosage was increased.

 One morning, about a month after the exams I went to my front door to
get my post. There were two letters waiting for me on the mat. One
contained my degree result (I got a 2,2) the second said I need to come into hospital to start dialysis.


At this stage allow me to introduce you to my Working Kidney Quotient (WKQ). We are all born with two. My Dad had two , my Mum two but now I had none.  So we have: WKQ: 2+2+0 =4. I will be referring to this equation from time to time. 
 
I had about five hours of dialysis every other day; was introduced to an even lower protein diet, a low potassium diet; a low sodium diet and taken off the high fluid intake.
 
Five hours on a machine is not five hours in hospital but more like nine. You wait for your cubicle to become free from the previous patient; the machine needs to be processed; you had to prepare your body and the machine yourself. When you came off you had to clean up your cubicle and clean the artificial kidney. If you cannot make your own way home you have to wait for transport that can sometimes be over an hour. So add on a few more hours onto each session.

All this was yet to come because for the next two months I ended up in hospital where I had my both of my enlarged kidneys removed to make room for a possible transplant in the future; lost my memory; found it again; discovered I had also had my spleen removed; stopped peeing altogether; was given a strict limited on fluid intake as it could not go anywhere until I plugged myself into the machine at the next session and, towards the end, allowed out for half a day to attend the degree ceremony.

After my discharge from hospital I attempted to begin the Solicitors Finals Course that I enrolled on before my renal failure took hold and my immediate life plan had been readjusted somewhat. I was already a month late. On leaving hospital as an inpatient I went to pick up my grant cheque but it had been returned to my local education authority. That day I had to borrow money off a lecturer so I could eat a nourishing dialysis diet meal. With this delay and having to return to the hospital every other day to dialyse I had no real choice but to pull out of the course. When the grant cheque was eventually returned I had to cash it so as to pay off my bank overdraft.
 
My kidney machine sessions changed from three five-hour sessions to two eight-hour sessions. After about a year, my Dad gave me one of his kidneys. WKQ: 2+1+1 =4.  For the next academic year I again enrolled on the course. With my new transplant I was now raring to go, free of restrictive diets and fluid intake. I began the course but unfortunately had a rejection episode that meant I had to pull out of the course again. The kidney was saved but had I to wait another year assuming my renal function allowed. In the meantime I continued doing voluntary work at a local legal advice centre.
 
Meanwhile, after her gradual kidney function deterioration, the increase in prescribed drugs; the reduced diet, the fistula operation and increased fluid intake, Mum's kidneys failed and she went on a machine that was eventually installed in my old bedroom. WKQ: 0+1+1 = 2 On staying with her for a week as her carer the phone went. WKQ: 1+1+1 =3.

Parity between the three of us for the first time in years. The hospital had a kidney for her and the operation was a complete success. By now I had not only completed the law course but, after a few re-sits, passed all the exams but for one. At a check up I was told my kidney was rejecting and this time there was nothing that could be done. As I was reintroduced to the usual restrictions I had to concentrate on my last exam which I passed but now had to prepare myself for going back on the machine rather than apply for a trainee solicitor's job. WKQ: 1+1+0 =2.

On returning from a day volunteering at the advice centre I answered the phone. It was the hospital and I was told not to hold my hopes too high but they might have a kidney for me. On arriving at the hospital I walked past a full ICU's relatives room thinking I may actually be about to benefit from their misery. All that night I ending up on dialyse along side another patient who had also been called in.

Usually a hospital was only given one kidney when someone had died, the other being offered to other hospitals. On this occasion both kidneys were within the hospital. We were not competing for the same kidney and in the morning both of us had a transplant. WKQ: 1+1+1 =3. I was soon able to apply for jobs and so qualify as a solicitor. However Mums' kidney rejected WKQ: 0+1+1 =2 and few years later she died WKQ: 1+1 =2.

Today my kidney is doing OK. I take sixteen tablets a day; some of them due to a
heart condition I picked up along the way because of damage resulting from the long periods of high blood pressure. I now work part time as solicitor in the same law centre I used to volunteer at when I was on a kidney machine for the first time. I decided to work part time as I do not now how long this transplant will last but while I have my health I am not going to waste it cooped up in an office.
 
This is a whistle stop tour of my, as yet, unpublished book on my renal failure experiences.
 
PLEASE HELP. Publishers have complimented me on my 220 page book, some commenting on its humour, but say it will not sell. With a million on dialysis world wide and 16,000 in this country  (the uk) they might be wrong. If anyone wants to read it and return it with suggestions please contact me. 
 
m.osullivan@virgin.net

 
 
 
 
 
 
 
 
 














Title: Re: my story, my book
Post by: Romona on August 31, 2007, 06:30:05 PM
 :waving;
Hi Mikol
Title: Re: my story, my book
Post by: Sluff on August 31, 2007, 09:14:00 PM
Mikol Please go to the introduction thread and let us get to know you.

http://ihatedialysis.com/forum/index.php?board=14.0

Thanks in advance.

Sluff/ Admin