And the best is yet to come

In March this year, Construyendo Futuro interviewed a strong girl undergoing dialysis at Diaverum Santa Fe, who still did not stop dancing in the Cabo parades of Sauce/ Argentina. Today, we are happy to announce that Valentina has been transplanted. A story of hope and courage.

A little history

Valentina was born on January 2nd, 2003, in Chajarí, Entre Rios province, and started a dialysis treatment in July 2015. In May this year, we were lucky to interview her parents and we got to meet those beautiful eyes which become slanted to give room to a sweet smile. Valentina sings, dances and plays the guitar. Music is her companion in life. In May, she surprised us with a song she loves: “I believe in me” [“Creo en mí”] by Natalia Jiménez. In the chorus it says: “We are all so different, unique, original… I’ve been through the worst, and the best is yet to come. I believe, I believe, I believe in me…”

And the best was about to happen. A few weeks ago Valen’s parents told us about the great news. Aimará, her mother, said: “You should call her father so he can tell the story better because I get emotional when I talk about it, I can’t.” So we talked to Valen’s father, Guillermo, who told us that Valentina had been successfully transplanted.

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No time to think

Guillermo tells us that “everything happened so fast, there was no time to think, just to act”. Today, Valen is at home, recovering after the transplant and all her family feels that there are not enough words to express their gratitude. “Valen was scared, but she knew this was her chance”, says Guillermo.

In July 2015, when they started Valen´s treatment in Diaverum Santa Fe, the daily life of the family became a marathon of trips. They live 300 kilometers away from the town center, so every-day life had to be reorganized but Guillermo states that Valen always kept a positive attitude and underwent the dialysis treatment with great energy. Valen was on dialysis for one year. It was a year of learning and patience. Her family highlights the loving care with which their daughter was treated during this year at Diaverum.

The phone rings

On Thursday, August 11th, Aimará’s cell phone rang, when it was not even 7 am. They had been trying to reach Guillermo’s cell phone but the device was not working properly on that particular day. Aimará picked up and when she heard what the call was about, she faltered and put her husband on the phone. Guillermo and his family were instructed to go to Nephro Clinic [Clínica Nefro] in Santa Fe. Some weeks before, Guillermo had been undergoing the medical tests to become his daughter’s donor, since Valen had cartilage growth problems in her hips and knees. Although both parents were willing to be donors, doctors indicated that Guillermo would be the better option. In case Aimará wanted to become pregnant again in the future, it would be too risky for her.

Finally, the donation was possible and everything happened very quickly. During that rushed morning, however, Valen’s parents allowed themselves an instant visit to the girl’s grandparents. Very emotional hugging and crying but full of strength, as well. “As soon as Valen heard the news, she feared the surgery, but during the trip we talked about it and she understood that this operation was a big opportunity for her”, says Guillermo.

They arrived at 1 pm. The team supporting Dr. Paladini counted 15 doctors. Guillermo was surprised but also felt reassured it would all end well. The surgery lasted around one hour and a half. Valen remained in the Intensive Care Unit for three days, and one more day in intermediate care. “At the beginning, we were not allowed to stay with her over night. So Valen was very brave and stayed in her room all alone, while we were in the waiting room. Luckily, she recovered very quickly.” Guillermo tells us that she was a little uncomfortable due to the catheter, but she resisted all pain without complaining. During her recovery, our little heroine is still not attending school. She is at home, and still needs many precautions and much care.

Sadness and pride

Guillermo tells us: “When I posted the news that Valen had been transplanted, a family member of another kidney donor made a comment. He wrote that he felt sad, but at the same time, proud.” These are very hard stories, they imply a lot of pain on several accounts, but the challenge is to find hope to keep moving forward and, as Valen says, always remember that “the best is yet to come”.

World Diabetes Day: Diabetes is one of the main causes of renal failure

diabetes2
One in two adults currently living with diabetes is undiagnosed.

In the past years, diabetes mellitus has developed into a widespread disease – with serious consequences. Diabetes is one of the main causes of renal failure. Therefore, prevention became key to contain the disease.

In October, this year´s Global Burden of Disease Study revealed which diseases are the most threatening for today´s world population. It turned out that diabetes mellitus has already become a widespread disease: in many countries, more people suffer from diabetes than from pulmonary disease and bowel cancer. The main causes for diabetes are overweight and a lack of exercise. Only a small proportion of the patients have type 1, which has genetic causes and affects already kids.

One of the most serious consequences of diabetes is potential kidney failure: diabetes is one of the main causes of renal failure. Why diabetes often leads to renal failure has not yet been fully understood but what is known is that if diabetes is not treated properly, the consequences can be serious – right up to renal failure.

Unfortunately, the likelihood of developing diabetes increases with age. Since the societies are growing older, especially in Western countries, the number of diabetes patients is constantly increasing. The best way to prevent diabetes is a balanced diet and regular exercising.

Why not celebrate World Diabetes Day with a healthy dessert, not only for diabetes and dialysis patients: Clafoutis with apple and raisins

Offspring in Hamburg – patient gives birth to healthy son

Offspring in Hamburg
“It is wonderful to see Louis learning new things every day!”

Every baby is a little miracle. Holding the tiny hands and feet, the first scream, the first smile are unforgettable moments in the life of all parents. For Rhana Bakht, however, it was even more than that when she held her son Louis in her arms for the first time. The 34-year-old has been on dialysis for almost 20 years and still gave birth to a healthy son beginning of the year.

“When I found out I was pregnant, I was initially shocked,” says Rhana Bakht today, “The pregnancy was not planned, of course. As a dialysis patient, it is a big risk, but it was clear to me that I wanted to have the child.” Pregnancy in dialysis patients can lead to a variety of complications, but it is quite possible if gynecologists and nephrologists closely work together. Dr. Andreas Dillmann, Dr. Dominik Kahlke and Dr. Janine Rothgordt, specialists in internal medicine and nephrology in our MVZ in Hamburg/Germany, accompanied Rhana Bakhat throughout the entire time of pregnancy: “For us, a pregnant patient is of course not an everyday case, but we have worked together very well with the colleagues and the pregnancy went well for the longest time “, says Dr. Dillmann.

During pregnancy, the unborn child is connected to the mother’s blood circulation via the umbilical cord. If the mother´s kidney is not working properly, the child is also contaminated with the pollutants in the blood. Therefore it is important to dialyse the patient as often as possible. “We have dialysed her six times a week for five hours, changed the composition of the dialysate and adjusted the patient’s diet to compensate the loss of protein,” explains Dr. Kahlke. “In addition, we changed the medication and sonographically checked the target weight every week.”

The pregnancy went well for Rhana Bakht until the very end when she started to suffered from the HELLP syndrome. This is a form of pre-eclampsia in which the number of blood platelets responsible for blood clotting decreases sharply within hours. In this case the patient suffers from severe pain in the upper abdomen and swelling of the hands, legs or face. Also, blurred vision, yellowing of the skin, sudden nausea, diarrhea and vomiting or skin jaw can indicate that the pregnant woman suffers from the HELLP syndrome. High blood pressure and protein in the urine are also characteristic features. As soon as it became clear that Mrs. Bakht was suffering from HELLP syndrome, the doctors arranged for a caesarean section not to endanger the life of mother and child. Louis was born on March 13. After a few weeks, he and his mother were able to leave the hospital.

But how do you cope with a newborn and regular dialysis sessions? “In the beginning, it was not easy, since the health insurance company does not provide us with a nanny and my husband is fully employed. I had to bring Louis with me to the dialysis clinic for a while but took perfectly care of , “says Rhana Bakht. “Now, we have found our routines and it is wonderful to see Louis learning new things every day!”

We wish Mrs Bakht and her family all the best for the future!

Italy’s Acquaviva Kidney Center turns 20 – let’s celebrate

Happy birthday! Acquaviva Kidney Center has celebrated its 20th birthday few weeks ago. The staff has organized a party for all the patients and the employees and together they made a great celebration.

A postcard from the party
A postcard from the party

From time to time it is important to step out of the clinical routine and celebrate what you have achieved. Patients and staff celebrated twenty years many of them spend together in the Acquaviva Kidney Centre.

Dr. Bonifati, the medical director of Acquaviva Kidney Center, said: “We have decided to celebrate because we have to be proud of the achievements of all these years. In good and in though times the staff always went on with strength and trust. We will continue to use staff competence and passion to improve the quality of life of every single patient!”

Diaverum Australia joins Research Walk in Brisbane

Staff and families from our Toowoomba clinic took the opportunity to join the Research Walk of Kidney Health Australia to raise funds for kidney patients. This association is a not-for-profit organisation dedicated to helping people with kidney disease, with a view to improving their health outcomes and quality of life and that of their families and carers.

As last year, Kidney Health Australia called the kidney community again for the national Research Walk to come together and raise funds and awareness to support those affected by kidney disease. The registration monies for this walk will go towards further research into kidney health.

The Diaverum team gathered together at beautiful Queen’s Park and Botanic Gardens at 9.00 am with hats, water, families and enthusiasm. 28 staff and family from Diaverum’s Toowoomba Dialysis Clinic joined in the fun!
The Diaverum team gathered together at beautiful Queen’s Park and Botanic Gardens at 9.00 am with hats, water, families and enthusiasm.

Following two days of fog and rain, the 2016 Research Walk presented with a beautiful sun-filled day on Sunday, 11 September 2016. The Diaverum team gathered together at beautiful Queen’s Park and Botanic Gardens at 9.00 am with hats, water, families and enthusiasm. 28 staff and family from Diaverum’s Toowoomba Dialysis Clinic joined in the fun! “We were honoured to be joined by the Managing Director Esteban Cox and his family for the 5km walk around the park”, said Alexia Mohr, Clinic Manager from Diaverum Australia’s Toowoomba Dialysis Clinic in Queensland.

The walk ventured around Queen’s The walk ventured around Queen’s Park twice allowing the group to enjoy the beautiful sights of heritage listed gardens and walking paths. Park twice allowing the group to enjoy the beautiful sights of heritage listed gardens and walking paths. Still, this was not why so many people joined the walk. Their reasons were written on their numbers, like “I walk because I have kidneys and I can, “I support kidney health” or “I support my wife who cares for kidney patient”.

Chronic kidney disease currently affects an estimated 1.7 million Australians. Each year more Australians die with kidney related disease than breast cancer, prostate cancer and even road deaths.

Patient education decides on the treatment form of dialysis patients

Patient education is a crucial factor in the question of what type of treatment a dialysis patient chooses: This is the result of an international study performed by Diaverum. It was published in the scientific journal PLOS ONE in May 2016. Patients receiving information about the different treatment options in advance of their first dialysis session chose significantly more often peritoneal dialysis (PD), whereas haemodialysis (HD) is chosen by patients who start dialysis without prior information to the treatment – and that, although there is no medical indication against PD. pd

In 2012, with more than 500 patients from 25 dialysis centers in Poland, Hungary and Romania Diaverum has examined the circumstances, which led to the decision for one of the two treatment forms. It is the first study in Eastern Europe, which examines the relationship between patient education and type of treatment. For the evaluation, a distinction was made whether the start of the dialysis treatment was planned (with more than three months in advance, 42%) or non-scheduled (less than three months, 58%). The result is unambiguous: 98% of non-planned treatments were performed as hemodialysis, only 2% as peritoneal dialysis. Balanced ratio, however, can be seen with the scheduled treatments: Here the patient decided together with their doctors in at least 17% of all cases to use PD, 83% chose HD. The main reason identified by the experts of Diaverum was the information provided to the patients: In 94% of the cases with planned treatment starts , patients received extended patient education sessions and material. In cases with unplanned treatments, this was possible only in 69% of cases.

Willingness to change is low, more patient education needed
The study also shows that the decision for a certain type of treatment is made very early: Only 4.5% of patients with a non-scheduled start of treatment changed later on from hemodialysis to peritoneal dialysis. “The willingness to change is low. Most patients remain with treatment form with which they started, “says Prof. Dr. Belén Marrón, Medical Director Worldwide Home Therapies. That’s why Diaverum puts a lot of effort into comprehensive patient education and shows the patient – if time permits – the specific treatment forms. While in-centre haemodialysis is always performed by experienced nurses and doctors it ties the patient very much to fixed dialysis times. Peritoneal dialysis needs to be performed by the patient himself. Therefore it offers more flexibility and autonomy for the patient. “We do not advise the patient to one or another form of treatment, but we enable them to make a sustainable decision that fits with their personal and medical needs,” says Dr Marrón.