So this past week I attended my 20th year school reunion – the class of 1997. Back then I was carefree and never knew of the medical struggles I would encounter later on. While catching up with my old school friends, I found myself saying the same thing to everyone when asked about my dialysis, that it was a big part of my life and is very much my story but that It wasn’t my only story and that I wouldn’t change my life for anything or anyone. Yes I would want to change my health status but other than that I feel incredibly blessed to live my life.
I truly love my life, love my work, I love my home and most importantly I love my husband and my family support system and I wouldn’t change any of it for anything. However saying this almost makes living with this disease sound easy, but being on dialysis does comes at a price and being in renal failure is an all-consuming struggle that I face every single day.
My kidney journey began in 2002 when I was diagnosed with glomerulonephritis, which is inflammation of the glomeruli, the structures in your kidneys that are made up of tiny vessels. These vessels help filter your blood and remove excess fluids. If your glomeruli are damaged your kidneys stop working and you go into Kidney failure. I was blessed enough in 2002 that my mom tested as a perfect donor match and within 2 weeks of being diagnosed I had my moms kidney working perfectly inside me.
I lived a beautiful & full life for 10 years before my transplant kidney began to take strain. It was in 2011 that I was very sick over Christmas and New year and landed up having to help my transplant kidney out by having dialysis once a week for 4 hours, after about a year this then became twice a week and then eventually 3 times weekly as my transplant kidney slowly deteriorated. I am currently dialyzing 4 x weekly. The 4th session has become necessary for me in order to maintain my work program and has better impact on my overall blood results and blood pressure on and off the machine.
Last year when we moved to our beautiful home in hillcrest, my husband installed a dialysis room, and water purification plant with a generator and everything else I would need to make my life on dialysis a comfortable one. Being able to dialyze at home has been a huge relief from a hospital environment.
At the beginning of 2017 we have had some challenges with the co
mpany managing my home dialysis and so I went back to the hospital for dialysis 4 x weekly. However, We are hoping to have everything in order for my home dialysis to begin at home again by the end of August.
As far as I know I will be the only home hemodialysis patient in KZN. There are only a handful of us in South Africa lucky enough to be on home hemodialysis which is sad as it is so life changing having dialysis in the comfort of your own home. It is very common practice in Europe and America for patients to be on home dialysis and self manage their treatment process so once we have settled our own home dialysis again, I hope to be able to make a difference in other patients lives by making younger patients aware of the process as well as trying to reduce the high cost of this option.
For me the worst part of dialysis is the time I am robbed of – its not only 4 hours. It is all consuming because you are either preparing for dialysis or sitting through your session or feeling the effects of it afterwards. Its often why patients refer to the saying: Dialysis: damned if you do and damned if you don’t. I often wonder what 4 hours means to somebody during their day? I recently worked out that 35% of my “awake” time is spent on dialysis per week. That is almost half of my week.
Dialysis trumps death, it is a means to staying alive. It is long, tiring and physically and emotionally draining process that is very hard on the body. Essentially it is the hardest your body will ever work while literally doing nothing. Dialysis can only do about 10% of the work that a functioning kidney can do and it frequently causes other severe health problems such as anemia, infection, bone disease, heart disease and nerve damage. The average lifespan of a person on dialysis is between 5 – 10 years. The process on the machine can be an unpleasant experience as many patients deal with nausea and vomiting, dizziness, fatigue & cramping. Patients also need to follow a completely restricted diet with limited fluid intake as well as everything consumed needing to be low in potassium and phosphate which doesn’t leave much J
A transplant may not be a complete cure however it is the best alternative for those in end stage kidney failure. It allows for patients to experience true quality of life and frees them from daily treatment regimes, dietary restrictions, physical pain and discomfort & constant bodily fatigue.
For me a transplant would not only mean a new quality of life, but also a chance at motherhood. If there is anything I could ask for to complete my life it would be to become a mother. I have been tested and I am able to have my own children so a transplant is key for me to be able to carry them otherwise I need to find a surrogate.
While I am on a transplant waiting list the best option for me is to have a live related donor – this is because of the many antibodies present in my blood from my first kidney transplant and from blood transfusions I have had over the years. A live donor would allow my Doctors to match me to a donor that may not have been a match previously. To do this I would undergo a process called desensitization of my blood. This involves first filtering the antibodies out of a patient’s blood. The patient is then given an infusion of other antibodies to provide some protection while the immune system regenerates its own antibodies. This will stop the body from rejecting the transplanted kidney and the bonus of it is that the person donating does not necessarily have to be a perfect match. Until I am most blessed with this type of scenario I will continue to thank God for all my other blessings and look forward to the day I can eat a fruit without worrying about its potassium content J For more on my experience of home hemodialysis – please email me on firstname.lastname@example.org.
Remember we need people to talk about this topic as much as possible and get people to register as Organ Donors.