Below is an account of Mr Lulamile Morris Sidwaba; a recently diagnosed person, who is living with Chronic Kidney Disease and awaiting kidney transplantation.
Ill Health Background
For almost a year I had been suffering from bouts of painful abdominal cramps especially on hot days, as well as leg muscle cramps when sleeping.
The life of a socialite changed one Sunday when I was diagnosed with end-stage kidney failure. This meant I would have to be enlisted for organ donation. From this life-changing diagnosis, to being prepared for dialysis was a matter of 72 hours, due to abnormal toxin and fluid levels in my body. At this point of my diagnosis I could hardly walk ten meters without feeling that I had just completed 50 push-up exercises. The level of fatigue was so immense, I believe that my body was practically shutting down, yet this was only the beginning.
I was swiftly booked to meet a cardiovascular surgeon who inserted a catheter into my groin to gain access to the groin or thigh artery, which is a simple procedure of inserting this plastic pipe into the artery sticking out much like a tap. From that day onwards it was crucial for me to know what was happening to me because there were such rapid physical changes in my energy levels. I felt I was easily irritable, and my emotions were fluctuating and explosive.
The big catheter in the groin was supposed to be a short-term intervention because I was informed that it posed a high risk of introducing infections into my body. Further, I was advised that infections were the biggest enemy for somebody whose kidneys were shutting down because the kidneys were no longer functioning effectively to help remove germs and other bodily toxins.
Eventually, the arm was scanned in order to identify a sizable (3.5mm or higher) sized artery to be connected to a vein, preferably on the less active arm. During this whole set-up phase for dialysis, I realised that it was advisable for me to expose my immediate family to all the relevant medical information, and experiences as it was going to affect them to a great extent. A dietitian was appointed, with a specific mandate to professionally advise on which foodstuffs to eat, and which ones to avoid, as well as to explain how the body functioned, without the use of kidneys.
The qualified dietitian advised me:
1. Not to drink fluids or eat foods or fruit that were high in phosphates. This included food items such as spinach, or Watermelon, because the damaged kidneys were not able to process them. He told me that I ran a risk of phosphate overload that threatened to cause toxicity and affect normal functioning of the heart.
2. To drink as little water as possible, because water would be absorbed into the bloodstream, consequently causing a body-fluid overload, because of kidneys that can no longer pass urine, and that fluid overload would cause abnormal swelling of the lungs consequently causing breathing difficulties, and a strain on the heart.
CREATING AN ARTERIO-VASCULAR FISTULA:
Within two weeks the operation conducted on my right forearm where they had located a natural sized artery and connected a vein to create a fistula was now visibly growing having a blood rush like the heart. From time to time, I would experience cramps on the hand due to the fistula robbing it of the normal blood flow, and I could no longer use the hand for long periods, as it tired quickly. I could no longer do push-ups with this arm, as I was advised it was risky.
DIALYSIS PROCESS AT A HIGH LEVEL:
On my first day of renal dialysis, I was still too weak, overloaded both in fluids and toxins. My chest was burning and had just survived an infection scare which kept me under morphine and a number of other drugs, which contributed to more toxins in the system.
A predetermined dry weight for me was determined and on climbing the scale I weighed some 4kgs heavier. This meant I would be having four litres of fluids removed plus an extra 500ml since I was also provided a light snack, tea and fruit. I was told banana should never be consumed due to its high content of unwanted phosphates.
This 4.5 litres was to be extracted via dialysis over a 4,5 hour period. However, due to the added fluids, I was advised that the dialysis had to be done over a 6-hour period. The goal was to ensure that the blood circulates adequately through the dialysis machine, being cleansed of all toxins to reach creatine levels of between 75 to 83%. In layman’s language, it is a major displacement of blood from all over your body out of you into a machine that extracts as instructed and at the same time pumping back into the catheter at maximum 300ml/h flow rate.
MY DIALYSIS EXPERIENCE:
Upon conclusion of the six-hour session and needles removed, I was assisted to the scale and indeed I was back to dry weight. Indeed the feeling was dryness. I had to be transported to the ward on a wheel chair. The level of body fatigue made it impossible to even brush my teeth, nor could I stand for longer that a few minutes.
Normal activities of daily living, like taking a bath were a no-no for me, because I risked drowning in the bath. A shower, on the other hand, was also not a viable option because I couldn’t stand long enough. My sleep pattern was disrupted as I could not manage even two hours of uninterrupted sleep. After dialysis, even though I still felt tired, I was able to wipe myself with a soaped cloth, sit on a chair, taking numerous breaks in-between, even during brushing of my teeth.
On my second dialysis two days later, with one hour left to finishing the session; severe cramps began on my legs, salt was provided and poured under my tongue. All seemed fine because I had become accustomed to these leg cramps, but this time I could no longer take cramp medication due to their high phosphate content. At some point, I seemed to have passed out, and when I woke up and I realised that I just been resuscitated.
I was informed that my blood pressure had dropped dangerously, and I was slowly slipping into a coma, until the dialysis machine detected that there was a significant decrease in my blood pressure and my pulse was disappearing. According to the nurse who responded first, my eyes had turned, as if I was dying. This type of near death incident happened several times over the following months, causing stress to everyone including my children and wife.
Being an active farmer who was used to walking the fields, this natural form of exercise had been stopped abruptly. As a result of the near death experiences, my family had to attend support groups with me, listen to shared experiences of donors, recipients and family members; with medical doctors and professional nurses present to appreciate the tribulations of Chronic Kidney Disease, and the side effects of prescribed treatment/s. Nowadays, since the commencement of the kidney dialysis, which is just over a year ago, the idea of just going to a shopping mall and walking around all day just does not happen anymore.
IMPORTANCE OF SUPPORT GROUPS:
Having gone through the experience of being diagnosed with Chronic Kidney Disease, and undergoing regular kidney dialysis, I cannot overemphasize the importance of the family joining a kidney transplant support group. To this extent, two of my children, as well as my wife attended the first session together with me. The family objective was that we should all gain a better understanding of the whole chronic kidney disease, kidney dialysis process, and kidney transplants.
The latter intervention, we were advised that it was the definitive medical solution for chronic kidney sufferers. Indeed, in that transplant support group, we learned a lot of basic theory about the disease, as well as heard a lot of testimonies from other chronic kidney sufferers and kidney transplant recipients.
During my many kidney dialysis sessions, I met and engaged with a gentleman who was rejected three times by donor’s kidneys after a kidney transplant, and he has been on dialysis for a period of 25 years. Meeting this gentleman, and hearing his long challenging story of survival, not only relieved my inquisitive mind but also prepared me for the tougher questions one has to deal with in the future.
The membership of the support group is very helpful on a number of issues such as diet, fluid control, medical aid fiascos, and how to prepare for long trips.This is also where I learned how to deal with these cramps that come mostly when one is sleeping. As I write this now I have a heated compressed cushion that is in the microwave oven which I will take to bed and put my legs on in order to relax my muscles.
My practical tips for surviving leg cramps:
1. Always keep Ice blocks (even flavoured ones) if you wish to quench thirst, rather than drink a whole glass of water;
2. Keep extra chilled grapes, if like myself you are not diabetic, to avoid high fluid intake;
3. Always remember that milk in cereal (including soup) is part of fluid intake, therefore consume as little as possible;
4. Resist all canned foods, because they contain preservatives and colourants, which add to oxidants and other toxins that would otherwise be extracted by kidneys;
5. Processed meats are a taboo, due to unnatural additives that too would have been dealt with by the kidneys;
6. Highly advisable and rather logical is abstinence from lagers and dark wines, due to low fluid absorption levels and high phosphates.
THE PSYCHOLOGICAL IMPACT:
- No one would be courageous and positive without the strong support of those nearest and dearest to them.
- Everything happens too quickly and your productivity is curtailed to a pause.
- You become irritable because others have to do what you were used to doing for yourself.
- The sudden change in diet is best experienced when everybody in the household participates.
- Not knowing how to explain to people that you cannot travel long distance at short notice.
- At functions, you can only stay for so long then have to retreat.
- No more deep water swimming in case of cramp attacks.
- The heartbreaking look on your children’s faces when coming from dialysis. Because of this, I requested weekday morning sessions so that I return from dialysis while they are still at school and I just tuck myself in.
- Three times a week you endure two size 15-inch needles into my arm for dialysis.
LOW AWARENESS ABOUT ORGAN DONATION:
The general population of all race groups in South Africa still know very little about Chronic Kidney Disease and Organ Donation. I write this article being a blood group that is considered rare, O-negative. There is the persistent myth borne of ignorance and religious fear that if one donates with their body parts in the event of death, that donor may never survive the afterlife.
This lack of knowledge and understanding on the need for organ donation has contributed to having a very long national transplant waiting list in a country that is in the top five best transplant countries. Of our black community, which makes up to 75% of the South African population, less than 3% in the year 2000 were voluntary transplant donors.
Imagine if we could create country-wide support groups led by organ recipients and donors, hold workshops around the country, and have Question and Answer sessions, where engagements on issues of belief systems, culture, and religion are also addressed. Black African people speaking in the vernacular on an important issue as this could embolden many and in so doing increase the capacity for the transplant community to conduct their work on a shorter more reasonable waiting list.
As a person who is living with Chronic Kidney Disease, and undergoing kidney dialysis, it is my belief that I have a duty to help create more public awareness about chronic kidney disease and also inform and educate all the affected people, whether affected directly or indirectly.
Upon diagnosis, one receives many pieces of advice, sometimes from people who know very little, for example, the use of Western herbal treatments, Chinese herbs, and Traditional Herbal Mixtures. As a matter of fact, most of these herbs have the very phosphates and oxidants that you are meant to avoid. Many are loaded with various salts which will demand that you drink a lot of water, and this would lead to fluid overloading, straining of heart, then eventually multi-organ failure.
When you suffer from High Blood Pressure, or occasional cramps, do yourself a huge favour, request your family doctor to check if your kidney functionality is not compromised. If the medical tests reveal excess protein in the urine, then it is imperative that you are urgently seen by a nephrologist, and other relevant medical specialists.