Kidney Failure & Transplant
Written on January 27, 2009 – 8:26 pm | by David Windell
This is the story about my Kidney Disease and the transplant I’ve received.
Diagnosis
I was born with an illness called Alport Syndrome. Alport syndrome is a rare genetic and highly degenerative kidney disease. There is no cure except a kidney transplant, although dialysis can keep people alive for several years. Alport’s can also affect hearing which is a side affect I experience. There is a lot of resource online about the condition;
http://en.wikipedia.org/wiki/Alport_syndrome
http://emedicine.medscape.com/article/981126-overview
http://www.patient.co.uk/showdoc/40001344/
There was also a play written about it http://www.guardian.co.uk/stage/2004/feb/07/theatre1 and http://www.culturewars.org.uk/2004-01/allports.htm.
From a young age I understood the impact that the condition would have on my life and knew that one day I would need a transplant. I used to visit the Great Ormond Street hospital in London on a yearly basis so that the consultant could keep his eye on my kidney function and subsequently transferred to Queen Alexandra in Portsmouth as I grew older.
Dialysis
When I was around 18 years old the consultants spotted a noticeable increase in my creatine output (an indicator of the levels of toxins remaining in your body). This was the first sign that my kidneys were failing. After around a year of attempting to use delaying methods to protect the kidneys (restricted diet, restricted fluid intake, increased blood pressure medication) I started to feel extremely tired and lethargic. It was at this stage that the doctors declared me to be in End Stage Renal Failure and decided that I should immediately be placed on the Transplant Register and to be put on dialysis. I was also declared Anaemic (not enough red blood cells) which was caused by my Kidneys not processing Iron correctly.
I had two choices with Dialysis (http://en.wikipedia.org/wiki/Dialysis):
Haemodialysis - This involves my blood being pumped through the blood compartment of a dialyzer machine, exposing it to a semi permeable membrane. The cleansed blood is then returned via the circuit back to the body. I would need to visit hospital 5 to 7 times a week for 6 to 8 hours to receive this treatment and have a permanent fistula surgically created in my arm. Because of the commitment and permanent effects involved I decided against this option.
Peritoneal Dialysis -The other choice I had (which I went with) was Peritoneal Dialysis (PD). It involved having a tube implanted into my peritoneal cavity which is used as a natural semi permeable membrane. I would have to fill the cavity myself, at home, 4 times a day, with a dialysate liquid (glucose). The fluid would absorb the toxins in my body and I would then drain it out and replace with fresh fluid after around 4-6 hours. It was the freedom this method brought me that led to it being my first choice.
I carried out PD successfully (alongside a good quality life) for almost two years when the doctors began to notice that it was not extracting the level of toxins they would expect. It was decided to put me on an overnight PD machine which combined with my usual daily routine should have increased the output.
After around a month on the machine I began to develop severe migraine headaches and subsequently suffered a series of seizures which put me in hospital for two weeks, one of which I spent blind.
The consultants saw this as the “final straw” and decided that I could no longer safely rely on PD for dialysis and would need to switch to Haemodialysis. I was then booked in for the surgical procedure to create a fistula four weeks after my release from the hospital.
The Transplant
Around two weeks after I was released from hospital (2 weeks before my wedding!) I received a call at midnight from QA hospital saying that they had a potential match for my kidney and asked me to come in immediately. Although I was quite shocked I was also elated and went straight in.
When I arrived at the hospital the nurses took a large sample of bloods which were taken off to a specialist hospital in London which cross-matches them against the donor’s blood to ensure that there wouldn’t be any severe rejection. Early the following morning I was told that the test had shown the donors kidney was a perfect match to mine with a rating of 0-0-0. I was taken straight down to the operating theatre for an 8 hour operation to implant the Kidney.
When I woke from the operation I couldn’t quite believe that I had actually just been through an operation. It took the Kidney a few days at first to fully begin working to remove the toxins from my body, I was told this was a good sign by doctors (not sure why?!).
I was released from the hospital after 10 days, just three days before I was due to be married. When I returned home I felt like I had a new lease of life. I could barely sleep at night because of the amount of energy I had. It’s certainly true what they say about not knowing how ill you really are until you are better!
I do not know much about the donor besides the fact that it was a young male (yes, men are given female kidneys if they match) who died in a car accident. I am extremely grateful to the family who gave the hospital permissions to use his organs for transplantation. The hospital has procedures in place which allow you to contact the donor’s family via post and then perhaps meet. Although I haven’t been in contact with the family yet as I feel they need time to grieve the loss, I will consider doing it soon to let them know how their tragedy has given life to me and most likely others.
People/Organisations Involved
The people who were/have been involved in my care are:
Renal Consultants – My renal consultant and his team of registrars have been instrumental in my care since I was first diagnosed with the condition and continue to monitor me now regularly.
Peritoneal Dialysis Team – I was trained and monitored by a team of PD specialist at the hospital who ensured that I was carrying out the dialysis correctly and that the exit wound of the tube was kept clean and sterile.
Renal Transplant Nurse Specialist – The nurse specialist is my primary contact at the hospital since I have had my transplant. She is available to answer any questions and concerns that I may have. I consider her the most valuable person in my ongoing care.
The only non NHS agency I am currently aware of who support Kidney Patients is the UK National Kidney Federation (http://www.kidney.org.uk/) who are committed to improving the life of patients with Renal Failure. I am often asked to comment on surveys they are carrying out regarding my hospital care and what I believe they should focus research investment on.
Looking Forward
Since my transplant my life has been great and I feel extremely well.
I am now taking medication to treat high blood pressure (a side effect of my Kidney Disease) and Immunosuppressant drugs which are designed to decrease the effectiveness of my Immune system to prevent it rejecting the foreign Kidney. Although these drugs expose me to higher risk of getting ill I have yet to suffer any serious problems.
In the future the doctors believe that my transplanted kidney will eventually be rejected and I will need another transplant and potentially dialysis until that happens. I believe current statistics have the longest surviving transplanted kidney at 38 years.
As a Christian however I believe that God has made me whole with this new Kidney and by his grace it will last my lifetime!