A dialysis and
kidney transplant story from the patient’s point of view.
Topics include dialysis, transplant, acute
glomerulonephritis, chronic glomerulonephritis, infection, rejection, post
transplant depression and post transplant diabetes.
Always
consult your doctor before using any information obtained from the internet
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A DIALYSIS & TRANSPLANT JOURNEY
Welcome to my Dialysis and Transplant journey. I’ve included a considerable amount of information on Dialysis and Transplant with many links to reference sites in the hope it will help people travelling the same path as my wife and I. However, please don’t take my story as a guide of what to expect from Dialysis or Transplant as each persons experiences are different.
INDEX
DIALYSIS AND END STAGE RENAL FAILURE (ESRD)
¨
Dialysis
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The Call
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Travel
¨
Recovery
¨
OKT-3
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Post Transplant Anxiety and Depression
GLOMERULONEPHRITIS
Acute Glomerulonephritis
When I was 16, a small cut from a piece of broken glass in
an aircraft instrument spray-painting booth became infected
with a very nasty MRSA (Golden Staph) infection. Within days, the
infection spread to the extent I was in 
danger of losing my arm. Until that
time, I had hardly ever even caught a cold. After all, I was the typical
Australian teenager living on a diet of sunshine and fun. Kidney was something
occasionally served with steak and Transplant was something Dad did in the garden.
The most powerful antibiotics of the day, quick action by our family doctor, my own good health, and excellent immune system combined to save my arm. My immune system was soon to work against me though, as shortly after returning to work as an apprentice Scientific Instrument Maker I began to feel increasingly nauseous and tired all the time.
Although I didn’t know it, this was the beginning of my renal failure. My wonderful immune system had begun to attack my kidneys. Apparently, my immune system had not “turned off” once the infection was defeated. I wasn’t to find out there was a name for the havoc it was wreaking until seven years later - Acute Glomerulonephritis and there wasn’t anything ‘cute about it.
Chronic Glomerulonephritis
After a few months, the lethargy and nausea disappeared and life returned to normal. Well, as normal as it can be for a hormonally overcharged 16-year-old. My ‘cute Glomerulonephritis had become the slow and insidious Chronic Glomerulonephritis.
Six years later at the age of 22, while visiting a doctor
for a minor bladder infection, a urine sample showed elevated protein levels (Proteinuria). A kidney biopsy was performed that
showed subtle damage to my kidneys and for the first time I heard the word
“Glomerulonephritis.” Interestingly, the word
“Transplant” was never mentioned. Perhaps 
this was because transplantation was almost unheard of in
1977 or maybe no one wanted to scare the living daylights out of me.
Almost a year later, a second kidney biopsy was taken and the progression of the disease plotted. A verdict of 10 years (maximum) before dialysis was pronounced. Tough stuff to take for a now 23-year-old with a very young family. After quizzing everyone I could about slowing the effects of the disease, I began to watch my diet carefully, reducing my intake of protein and, doing everything I could think of to avoid the dreaded dialysis and extend my life. Whatever I did must have helped because I managed to postpone dialysis for a total of 15 years.
During that time, we lived our lives to the fullest. Every major decision had the ‘What if’ factor applied to it i.e. How would we feel about the decision in five years time - What if we had decided against it, what difference would it have made? Not surprisingly, this method of decision-making was responsible for us travelling extensively and moving across the continent to start our own business. We crammed a lifetime into those 15 years and we had a ball.
DIALYSIS AND END STAGE RENAL FAILURE (ESRD)
Dialysis
When the time finally came to dialyse or die at age 37, I chose Peritoneal Dialysis over Haemo Dialysis simply so I could remain in the little seaside town we’d come to call home. To choose Haemo Dialysis would have meant moving house and home (and two teenagers) over 350km south to Brisbane or Toowoomba. Not an enticing thought.
Most people are familiar with Haemo Dialysis, as it’s visually attractive to film and television producers. As a result, it’s well, although inaccurately publicised. All I need to add is that Haemodialysis usually involves three four to five hour treatments per week and has strict fluid intake restrictions. On the other hand, Peritoneal Dialysis is visually boring and therefore not very well known. In my opinion, it provides greater lifestyle flexibility, greater fluid allowance and has a reduced impact on the body due to its steady nature. However, it isn’t suited to everyone and you do have to take many pills.
A semi permanent tube called a Tenckhoff Catheter is installed
in the lower abdomen through which between one and 3 litres of a special fluid
(Dialysate) is introduced to the internal lining of the abdomen (Peritoneum). The Dialysate washes
against the fine blood vessels of the Peritoneum and impurities in the
blood are drawn into the Dialysate by osmosis. The
Dialysate is drained back out through the Tenckhoff Catheter and fresh Dialysate introduced
repeating the process. While the basic principle of Peritoneal Dialysis remains the
same for everyone, it has many different
formats; each tailored to suit individual dialysis needs.
Peritoneal Dialysis worked for me, but due to my large frame, it couldn’t quite provide the ‘clearance’ required. Simply put, it worked, but not well enough. Regardless of dialysis adequacy, many effects of End Stage Renal Disease (ESRD) can make themselves known.
Once again, thanks to film and television producers, most
people are aware of the tiredness and lethargy ESRD brings. What people usually
are not aware of is the extent to which it affects your life. While it is quite
possible to maintain a job with ESRD, it is equally possible that due to the
effects of ESRD or unsympathetic management you will find yourself without
work. At the very least competing in the
Living with ESRD
The most annoying side effects of ESRD are not work related. These can include unbearable itching, Restless Legs Syndrome (A torture truly worthy of the Spanish Inquisition), Peripheral Neuropathy, highly elevated Parathyroid Hormone levels, reduced analytical capacity, halitosis, and depression.
Let’s put this into perspective for those of you who have no idea of what it is like to suffer from ESRD. Picture a depressed, fidgety person with bad breath and brittle bones, who cannot feel their fingers or toes except when they have to scratch (which is most of the time), who always seems to make poor decisions, and then give them a bad attitude. If you’ve been recently diagnosed with renal failure:
~ DON’T PANIC ~
You can enjoy life on Dialysis!
The first step in living with dialysis is to forget the idea
your life is over. It is just a bit different now. Sure, unaccustomed feelings
and strange symptoms will surface from time to time and that’s expected, but
they can be 
controlled. Don’t
let them ruin your enjoyment of life.
The second step is to take charge of your illness. You and your loved ones have to live with it, so it’s your responsibility to learn as much about it as you can. Knowledge is power. Develop a strong working relationship with your doctors if you haven’t done so already. You should learn to ask questions, writing them down and taking them with you if necessary, and never be satisfied with answers until you understand them fully.
The third step can be the most difficult for some, and that’s simply learning to talk. Talking to other patients may not be your idea of fun but other patients really are a gold mine of information. If you cannot talk to anyone at your renal unit, join an internet support group. My personal favourite is Transplant_Friends, which can be joined by sending a blank email to this address or mailing me here . Further information can be found at their website.
After three and a half years of limited success with Peritoneal Dialysis, a Parathyroidectomy to stem bone loss and reduce my serum calcium levels, two bouts of ‘low grade’ Peritonitis and 5 x 3 litre exchanges per day, a Fistula was fitted and I prepared for Haemodialysis.
Having a Fistula fitted is a relatively simple procedure. Its purpose is to provide a large blood vessel or tube close enough to the surface of the skin to insert the two needles needed to allow your blood to be cleaned by a Haemodialysis machine.
TRANSPLANT
The Call
Four weeks after my fistula was fitted and a matter of days
before I was to begin Haemodialysis, at 12:30am on
Caller: Hello Paul, Dr **** here. How are you?
Paul: Umm, err, Fine
Caller: Do you have a cold?
Paul: Umm, No
Caller: Do you have any infections?
Paul: No
Caller: I’d like to offer you a kidney… Will you accept it?
Paul: (Paul makes the sound of a person who had forgotten a previous decision vitally important to their continued survival)
YES, YES, OF COURSE! WHAT DO I DO…? WHERE DO I GO…? WHO DO I SEE?
Caller: Do another exchange and be at the Transplant
Ward of the Princess Alexandra
Hospital in
Paul: Yes, I will thanks!
(Paul makes happy but somewhat panic-stricken sounds)
Caller: Good Luck!
(Click)
Travel
Getting to Brisbane inside the
time limit was no mean feat. It took on average an hour to do a three-litre
exchange and I won’t even mention the pandemonium
surrounding the collection of all the things needed
for the trip. Everything had been carefully prepared when we were first
informed that I was “on the list,” but during the three and a half years since,
it had scattered itself randomly throughout the house. We met the challenge and
managed to leave at
Driving at night usually has its own special concerns, but
in
Pre Transplant Procedure
I remember very little of the well
oiled machine that is pre transplant procedure. So many things happen so
quickly, everything blurs together. It was only after a marathon of tests,
interviews, injections, final dialysis, showers, and pills that I found a few
precious minutes to collect my thoughts. I found those minutes on the operating
table, waiting for the general anaesthetic.
Besides the usual thoughts that accompany unexpected travel, such as “Did I lock the door?” thoughts of a darker nature worked their way into the brilliance of the operating theatre. “What if it doesn’t work?”; “What if I don’t wake up?”; “I didn’t get to say goodbye to anyone.” Panic took a firm hold as I sank into blessed anaesthesia, “I DIDN’T SAY GOODBYE To V i c k i…”
The Operation
The 3.5-hour transplant operation went well and I received a two-antigen match (the best match is six) from a young man who sadly lost his fight for life after a motorcycle accident. I am eternally grateful to both he and his family for having the courage and foresight to save the lives of people like me - people who they had never even met.
Struggling to free myself of the blackness, I saw the unfocused image of my beautiful wife. She leaned forward and gently whispered, “You’re OK” as if she somehow had read my mind. I desperately wanted to tell her so many things, but I couldn’t even muster an “I love you” before sliding back into drug induced sleep. I regained consciousness many hours later to more find more tubes, wires and machines than I thought possible to connect to one person. Thankfully, all my new ‘accessories’ were to be removed over the next few days.
The operation itself was wholly unremarkable. As with most kidney transplants, my new kidney was placed low, but not inside the abdomen and not, as is popularly believed, near or in place of the original kidneys. While the position of a transplanted kidney sounds awkward and uncomfortable, after a while, it’s hardly even noticeable and if it wasn’t for the scar (which fades with time), no one else would know it was there.
Recovery
I was taken for my first ‘walk’ the
first day after surgery. It must have been a strange sight. There was me, two
stands for drips and drain bags, and two nurses to usher the tangled mass up
and 
down the hall. The most rewarding
part of my epic 40-metre marathon was reaching the halfway mark where
outpatients gather to wait for their daily blood test results. These wonderful people instantly recognised the
effort and coordination involved and broke into
spontaneous applause as I turned for home. Standing alone in my triumph, my only regret was a third nurse had not been available to hold the back of my surgical gown closed. J
As mentioned earlier, I was free of ‘accessories’ after a few days. Shortly after the catheter draining my bladder was removed, I felt a strange sensation. I hadn’t produced any urine for 18 months so it took some time before I realised what it was. Urinating for that first time was a wholly satisfying, yet slightly painful experience. To this day, the simple act of urinating and the sense of satisfaction associated with it reminds me just how lucky I am and how courageous, thoughtful, and giving my donor and his family are.
Rejection and Treatment
Seven days after transplant, I suffered a major rejection episode. Rejection is not the horrific monster I imagined it to be. Highly trained nursing staff noted the telltale signs as effortlessly as a sailor reading a change in the breeze. Doctors were notified and a new course charted. I was to receive an anti rejection drug known as OKT-3.
OKT-3
OKT-3 is not what I would call my favourite
drug. Some people don’t notice any ill effects after
the injections, while others experience strong reactions. For about an hour
after each injection I felt as 
though
a moderately large truck had hit me, and then reversed over me again just to
ensure the right effect.
OKT-3 works by heavily suppressing the immune system; however, it is a double-edged sword as infection can take hold easily. I contracted another MRSA infection.
Post Transplant Infection
There have been many memorable moments in my life; not the least being the phone call to advise me a kidney was available. To be told you’ve been scheduled for surgery to remove your brand new and now perfectly functioning graft due to an infection in, of all places, your ear, that has eaten through bone and is within a millimetre of your brain is beyond memorable, it’s soul destroying.
Thinking my life was over and that living really was not worth all the trouble, my drug assisted sour mood deepened and I sank into a terrible depression to await my fate.
Sometime during the next few hours, tests indicated I had begun to hold my own against the rampaging infection and surgery was postponed. It would have been nice if someone thought to pass this news on to me, but no one did, quite probably due to my foul mood, so I continued to lay there under my personal cloud of gloom until I thought to ask why I hadn’t been taken for surgery.
Hours and days dragged onwards and my immune system slowly improved. As anti rejection meds were slowly reduced, the infection retreated. I was finally discharged from hospital after four months as both an inpatient and outpatient.
Going Home
During my first year, I developed several problems due to my
particular drug 
regime.
While some things can be serious in themselves, problems are reasonably common
and are usually relatively easy to treat. Some problems to watch out for are
Depression, Cataracts, Osteoporosis, and Hearing Impairment. Of more
consequence though is the possibility of rejection or dehydration. One of the
first signs of rejection or dehydration is often an
unexpected rise in body temperature.
Your doctor will have already told you what constitutes a rise large enough to necessitate a visit. It pays to bear in mind your temperature could raise for many reasons, so don’t immediately think the worst. You could be like me and rush to the hospital only to find out those two full strength beers you had the night before have given you a hangover.
Assorted Nasties
Being let loose on a world full of germs with a brand new transplant to protect can be scary, especially when you realise there is a lot of conflicting information out there on what you need to watch out for.
The golden rule for surviving the nasties is always following your Nephrologist’s directions, regardless of what you hear from other sources. Unless you are directed otherwise, here are a few things to avoid:
- Drinking Grapefruit juice (may interact with prescribed medicines)
- Medicines not prescribed for you (may interact with prescribed medicines)
- Homeopathic Medicines including St. Johns Wort (may interact with prescribed medicines)
- Sick people including children and babies who may be contagious (you do not want to catch what they have already caught)
- People who have been recently vaccinated with a live virus (flu shots do NOT contain live viruses)
- Garden Mulch or Compost (may contain Aspergillus)
Post Transplant Anxiety and Depression
One of the big problems seldom discussed in enough detail is our tendency to expect our health to return to normal straight away. Too little is mentioned of possible complications, not so much the major ones, they’re well covered. Long term issues can and do arise affecting your life style. Let’s face facts; Life after transplant will never be the same as it was before your kidneys failed.
Don’t get me wrong, everything had been discussed prior to the operation, just not in enough detail for my liking. I don’t believe doctors are at fault here. Personally, I think it is the unrealistic expectations we all have of how we will feel after transplant that colours our thoughts initiating our selective hearing response. For some reason, we tell ourselves everything will be OK once we get a transplant. Whether it is because there is just too much information for us to assimilate or we just like to look on the bright side of things, I don’t know. Then again, drugs certainly play their part.
Large doses of Prednisone are often prescribed as part of the drug regime. In most cases, Prednisone is reduced quickly post transplant, however, in the initial stages of treatment it can bring on dramatic mood swings. One moment you are on top of the world, the next in the depths of despair. You may feel fantastic after transplant, but keep in mind your mood may have been helped along by the drugs you are taking and depression could be lurking just around the corner.
For about a year after transplant, people need to understand that physically and emotionally they are on a roller coaster. Regardless of what you are told to expect, nothing can prepare you for the ride. Transplantation affects you physically and psychologically, and in my opinion, considerably more so than the illness that first required it.
The best thing to do is trust your Transplant Team and develop a good working relationship with them. Make sure both you and your partner tell them everything. Do not be a hero and try and tough out any unaccustomed feelings you may have, and don’t think for one moment that you’re the only person to feel the way you do.
Relationships
Many relationships end unnecessarily in the weeks and months following transplant. The team knows this and is able to help. Relationship difficulties are quite often traceable to specific drugs, and a slight change in your drug regime or a chat with a properly trained counsellor can make the world of difference.
When I look back at my first year and consider the big picture, my problems were only minor in relation to the whole dialysis thing. More importantly, they beat the heck out of dying.
Two years further down the track, I contracted yet another MRSA infection and another couple of weeks in hospital. At least this time I was incarcerated locally. Such is the life of the immunosuppressed. Eventually this too was resolved without excessive damage to my new kidney.
Post Transplant Diabetes
In July 2002 a minor viral infection or side effect of Mycophenolate (Cellcept), which was one of the anti rejection drugs I took, caused my Pancreas to take an extended vacation. I was admitted to our local Intensive Care Unit with a Blood Glucose Level (BGL) of sixty-five. It should have been around six. I had become diabetic and needed insulin twice a day.
Strangely enough, I really enjoyed being diabetic. Since I
was first diagnosed with renal failure, there has been a 
running battle with various doctors
over my diet. I’ve been repeatedly told I eat too much
fat as my cholesterol levels are always elevated. High fat content in a
diabetic’s diet is directly related to high glucose
levels in their blood. With no dietary changes save for taking one artificial
sugar in my coffee, I maintained excellent Blood Glucose Level control using
the average insulin dosage for my body weight. So much for
the fat theory. Revenge was sweet.
In December of 2002 I decided to reward myself (as we all do around that time of year) by having a few beers, some take-away and the odd bit of cake. A strange thing happened though, on days where I had been very naughty, downright piggish actually, and fully expected BGL’s of 10 or above, my BGL was between four and eight. I convinced myself these “normal” levels were due to the combination of alcohol and fats, one counterbalancing the other.
When I queried my doctor on this, we decided to lower my insulin dose on the off chance my Pancreas wanted to return from its extended holiday. In what was nothing short of a miracle, within days of lowering my insulin dose, my BGL returned to normal, so the process of gradually lowering my insulin dose was continued. By the end of January 2003, I wasn’t taking any medication for diabetes. The only problem I didn’t mind having had gone away.
In May 2007, I entered a poorly ventilated and very crowded room. Even though I was there for only a few minutes, I picked up a virus that landed me in hospital once again. My transplant suffered a little damage and I’m back on insulin again, but it’s no big deal. Managing diabetes is a breeze if you’ve been on a renal diet for any amount of time.
Skin Cancer
One of the side effects of many anti rejection drugs is their ability to lower your resistance to skin cancer. The mere thought of skin cancer scares many people unnecessarily. I have had about 10 excisions in the ten years post transplant, which isn’t too bad considering I used to live at the beach when I was a kid. In the last couple of years new drugs have been developed that make treatment by excision just about redundant. If you keep a close eye on your skin through regular skin checks by either your local doctor or a dermatologist, cancers can be caught early. Many of these lesions can be treated without surgery and with excellent results. One such treatment is detailed here. I’ve used several of the creams and they work like a charm.
LOOKING BACK
So, here I am today 11 years out and 52 years old, living in God’s own country and feeling fine. Among the many joys afforded me over the last eleven years is the extreme joy of seeing both my children married, the honour of welcoming three grandchildren into the world and hearing the words “Love you Grandpa” for the first time.
I’ve also had the privilege of developing a not-for-profit association that provides recycling services to the local community. Ten employees and fifty wonderful volunteers are currently supporting local communities and disadvantaged persons with services, grants and donations while helping to minimise the impact of our burgeoning society on the pristine area in which we live. Not bad considering at one stage I didn’t think I would make it to the ripe old age of 40!
But I haven’t done it alone. My family and friends have supported me every step of the way. In my darkest hours, they have, and always will be, my light at the end of the tunnel. Sadly, I have lost some of them on the way. To them I would like to pay special homage.
|
|
Merv, we talked so little, but you taught me so very much. Fondly
remembered. |
|
|
Ingrid, you always had time for your friends, even in your darkest hours. Fondly
remembered. |
LESSONS LEARNT
On dialysis, I used to live every day as if it were my last. Now I plan for the future and I expect to be around for a very long time. After all, I do have great grand kids to look forward to, haven’t I?
I’m often asked, “Would I do it all again if my graft failed?” My pre prepared and well-rehearsed answer is “At the drop of a hat! Life is just too precious! There are risks along the road, but there are risks on every road.” One of these days I would like to be asked, “What have I learned?” so I could answer...
A gentle breeze is
worth more than a BMW
A loving caress is worth
far more than I’ll ever own and,
The words ‘I love
you’ are worth a lifetime.
Thanks for sharing
the journey with me Vicki
PHOTOS
Here are some photos of my journey that may give you an idea of how skin colour can change from pre dialysis to post transplant. Oh, and it doesn’t matter if you’re black, red, yellow, pink or purple… skin colour changes in relation to the amount of toxins in your system.
3 Years before Dialysis
The photo was taken a few weeks after renal failure forced us to give up our business. If you look closely, you can see a yellow tinge on my forearm.
2 Days after Transplant
Just before this photo was taken, the nurses told me I looked 100% better than when first I walked into the hospital. I felt it too; it just doesn’t look that way! The fact Annette was sitting on two drains and a catheter didn’t help either. J
7 Days after Transplant
I was staying in an apartment not far from the hospital but
I did not spend much time there as hospital tests and doctors visits took up
most of the day. You’ll notice my well-developed set
of “Chipmunk Cheeks” from the large amounts of Prednisone I was taking. Just to
make matters worse I was revelling in Prednisone’s
see food and eat it side effect as well. It really is the most amazing feeling
to be able to eat all the foods forbidden to you while on dialysis. Bananas & Peaches Yum... J
By the way, could you tell I had begun to reject my kidney in that photo? Even though I felt fine, the nursing staff picked it as soon as they saw me the next morning.
4 Years after Transplant
This photo was taken after a day out in the sun. Yes, I did have sunscreen on and yes, I’d had a couple of drinksJ. Since transplant, my normally bloodshot eyes have a tendency to turn bright red after a beer or a day in the sun. This photo is of a double whammy.
10 Years after Transplant
This photo, proves that:
- Grey hair is inherited from your kids
- I am growing old disgracefully with a deep and abiding appreciation of my donor, his family and the battery of Doctors, Nurses and Technicians who have given me the wonderful opportunity to experience life after age 37.
GUESTBOOK
Thanks for reading this far and I hope its been worth your time. I wish you all the very best in your journey and may you enjoy all the love and support I have been so lucky to receive throughout my life.
Paul
P.S. I’d appreciate it if you could leave a comment in my guestbook J
Copyright © Paul Birchall-Hunt - 2007