Happy and healthy to be alive

Henriette Lamprecht – He was extremely blessed to be in the situation where he had a donor, a loving family, lots of support from friends and colleagues, an excellent team of doctors and a very supportive medical aid.

Volker zu Bentheim’s kidney transplant brought him “back to earth”, learning to appreciate what he had and still has.

Today he admits there were times he felt sad, having met patients who weren’t sure they would see the light of the next day, know when and if they would get a transplant or can’t receive one due to other medical issues and complications.

Volker was 38 years old at the time of his transplant and that was preceded by kidney failure. The failure could be explained by a combination of things, he says.

“I was a social smoker and enjoyed going out and having a few drinks. I had stress at work, which was my own doing, as I wanted to do everything myself.”

The deterioration of his condition was slow and went by without him noticing until he suddenly developed elevated blood pressure, loss of energy and sometimes experienced difficulty breathing while sleeping due to fluid collection in his lungs.

He also experienced severe cramps of his calf muscles during the night.

From when he was diagnosed with kidney failure until the transplant, Volker was on dialysis for about 18 months.

“This was indeed a short amount of time, since soon after I was diagnosed, my younger sister was kind enough to have herself tested to see if she qualified as donor.”

Fortunately he did not have any other illnesses. However, doctors had to get his blood pressure under control, which was quickly achieved during the few days he spent in hospital after the diagnosis.

It was during this time that Volker received the news he would need a transplant and had to have dialysis three times a week (Monday, Wednesday and Friday) for four hours at a time.

“After the first session, I already felt a lot better as I could breathe and sleep normally again.”

Apart from the dialysis, Volker had to see a dietician, something he was not really looking forward to. “It was not easy as all the things I loved to eat, were no longer good for me!”

Fortunately for Volker who lives in Swakopmund, a brand new dialysis centre opened at the coastal town a few months before he needed the treatment.

“If that had not happened, I would have been forced to move to Windhoek. Also, I had excellent doctors – including Oosthuizen, Kock and Van Rooyen – who regularly visited the centre.”

Reflecting on the news that he needed a transplant, Volker says he knew it was the only option, remembering an uncle of his who also had a successful transplant about five years earlier.

“It’s strange how your body and mind go into survival mode. It’s almost impossible to explain really. For me, the most important thing was to try and adapt to my new life and make the best of the situation.”

Volker also had the unwavering support of his employer, M+Z Motors, who “backed me all the way”.

“I lost around 15 hours of work per week, yet with everyone’s assistance at M+Z, we made it work.”

He would often go to work on Saturdays and sometimes even Sundays to catch up and get up to date.

Another aspect that made his journey easier, was knowing that he was in good hands as far as medical cover was concerned, since his medical aid provider was with him from the start.

Volker and his sister had to be in Cape Town for additional tests two weeks prior to the operation at the Chris Barnard Memorial Hospital.

Apart from his dialysis, Volker had to have blood tests done, while his sister had to undergo tests to determine which one of her kidneys was to be removed.

“We also had to have the tissue typing tests done again as doctors had to be 100% certain we were in the best possible shape for the operation.”

The transplant team was very professional and instead of Volker being afraid and worried that something could go wrong, he had a “strong feeling” he and his sister were in good hands.

“I was getting more and more confident that we were going to be just fine.”

Before they left for the transplant, Michaela Tietz of the Okanti Foundation arranged a meeting in Windhoek with two brothers, of which one had recently donated a kidney to the other.

“This helped a great deal to prepare us for what the procedures were once we were admitted to hospital. We were also allowed to visit a patient who just had a kidney transplant a few days earlier and she was doing great. What a relief!”

Meetings with the nephrologist, Dr Alex Kistan and the surgeon, Dr Elmien Steyn, made Volker and his sister feel they weren’t just “simply another case” but that it was really important to the team that everything would run smoothly and there were no complications after the operation.

“Obviously I was also worried that my sister would be OK and I repeatedly asked her whether she was certain that she wanted to go through with it. She was just amazing!”

The moment she was taken to theatre, Volker knew the moment had arrived and he reminded himself that he had to stay positive.

“I had a very strong inclination that I would never go for dialysis again.”

Three hours later it was Volker’s turn and he remembers the anaesthetist saying “get ready to be healthy again!”

He woke up in an isolation ward in the High Care Unit to prevent any infections. Volker knew he would have a catheter and the first thing he did was to carefully peek down. Although bloody, there was “actually urine in it!”

Steyn confirmed the operation went well, joking that the kidney started working before it was even properly attached. Volker’s sister also got the green light.

Steyn explained that the catheter was to measure the amount of urine excreted and to make sure the kidney was properly flushed. The urine cleared and quickly turned into a normal colour.

Volker also had a drain for the wound and a drip in his neck which fed large amounts of fluid into his system to flush the kidney. His medication included immune suppressants, with an optimal dosage that was calculated.

He was in High Care for three days and then moved to a normal ward where he remained in isolation.

He recalls a specific occasion where the drip in his neck became dislodged and he began to bleed from the wound. Volker asked the doctor if could not be removed altogether. The answer was yes, providing he drank up to six litres of water a day.

“After being on a fluid-restricted diet for 18 months, I was more than happy to guzzle down that amount for the next few days! During the three days in the normal ward, the catheter and wound drain were also removed, my appetite was back to normal and I just couldn’t stop eating!”

Seven days after the transplant, Volker was allowed to leave the hospital, but stayed in Cape Town for another two weeks for regular blood tests and doctor visits.

The pain when standing up and lying down due to the large wound on the right front side of his stomach, was “irrelevant” he says.

“I was healthy again and to top it all, I did not need dialysis for the past few days. Suddenly it felt as though the past 18 months were just a bad dream.”

Wearing a face mask in public was a small price to pay, with people not comprehending the miracle he has just been part of.

Volker left Cape Town just short of a month after his arrival and after recuperating at home for another four weeks, he went back to work.

Today he says it is important to live a balanced life and not just take your health for granted.

“I stopped smoking and can still occasionally enjoy a cold beer or a glass of red wine. I may not participate in any contact sport, but I wasn’t planning to do that anyway! I play badminton regularly and try to eat healthy, although it is not always easy. One thing that also became very clear to me is that I definitely did not drink enough fluids during the day. Now I make sure to drink a certain amount every day.”

He still has to take immune suppressants daily to prevent rejection of the kidney, as well as blood pressure regulators. Regular check-ups of his blood pressure and sugar levels, as well as blood tests is also a must.

Due to the immune suppressants, Volker has an increased risk of getting cancer, with regular testing of the prostate, skin well as tumour markers that are important.

To him, this has become second nature.

“Never dwell on things like ‘why me’ or ‘what have I done to deserve this’, because you will not get answers. Accept the situation, stay focused and above all – stay positive. Always see yourself coming out at the other end, healthy and happy to be alive .I am a hundred percent certain that a positive attitude and my longing for a normal life, helped me to recover as fast as I did.”

Volker has a special thank you for the Okanti Foundation “who will go out of their way to assist in any way possible, to support not only you, but also the people around you that are affected by your illness. They are truly amazing, dedicated people.” ([email protected])

Okanti Foundation supports Namibian families with a chronically ill child amongst others emotionally and to assist financially with holistic therapies & medication; Michael Tietz +264 81 127 8544; [email protected])