A testimony about home dialysis in Tougué (Guinea) using the NxStage® portable haemodialysis system

Abstract

Several testimonials have already appeared in the Bulletin de la Dialyse à Domicile or the website of the French-language Peritoneal Dialysis Registry detailing patient experiences remarkable for their empowerment at home (1), or for the achievement of sports and human challenges such as that of Fabrice HURE (2) or Jean Louis CLEMENDOT (3). The testimony we report is the travel story of Mr Alhassane DIALLO, a dialysis patient who wanted to join his family in Guinea at a great distance from any dialysis clinic, a journey that home dialysis allowed, but not without hardships. We hope that this experience can help other patients with independent travel plans. The success of this project was due to the unwavering determination of Mr DIALLO but also to a collective organization that requested the administrative, logistical and pharmacy services of the AUB Santé Foundation and close cooperation between the French and Guinean medical teams. This experience shows us how important travel limitations are in the experience of dialysis patients, and particularly in that of expatriate patients. In addition, it highlights the significant inequalities in access to care in the world: Guinea has only one dialysis centre, in Conakry.

Eric LARUELLE, MD, Nephrologist, AUB Santé Foundation*

Picault, Christelle. 2019. « Dialyse Longue Nocturne à Domicile à Bas débit De Dialysat. ». Bulletin De La Dialyse à Domicile 2 (1), 33-36. https://doi.org/10.25796/bdd.v2i1.19143.

2/ Fabrice Huré. La montagne dans le sang. Un témoignage humain d’un patient dialysé de nuit pour les autres patients. Bulletin Dialyse Domicile N°1.Vol 2. Avril 2019 DOI : https://doi.org/10.25796/bdd.v2i1.19153

3/ Témoignages : la traversée de l'Atlantique en solitaire en dialyse péritonéale.
https://www.rdplf.org/information-patients/temoignages-patients.html?id=337

Introduction

I am 33 years old, I am of Guinean nationality and I have been dialyzed since 19 December 2011. That is, I have undergone over 10 years of dialysis. I am married without children.

My testimony is the story of a trip to my family in my hometown Tougué, which is located in Guinea, 500 km from the capital, Conakry. This trip would not have been possible if I had not been able to perform my dialysis autonomously on the NxStage® machine.

History of my illness

I started dialysis on 19 December 2011 in Malaysia, where I had been awarded a scholarship to do my master’s. My kidney failure was diagnosed at a very advanced stage. I started my dialysis sessions right away, and at the same time, I continued my master's studies in telecommunications. After graduation, it was impossible for me to return to Guinea due to my health situation. I sought admission to a master's program in order to quickly enter the professional world as a telecom engineer. I obtained admission to a major university in France and a study visa for my stay.

When I arrived in Rennes in September 2015, the AUB Santé Foundation offered to do night-time dialysis for me. I must admit that this was very much appreciated, because it meant I had all my days free.

There was a big change following the switch from daytime dialysis (4 hours) to night-long dialysis (8 hours). Although I still feel some fatigue after night-time dialysis, it is much less than what I felt after daytime dialysis. I had pain in both my feet that completely disappeared with night dialysis. Over time, I also stopped taking my blood pressure medication, which is a positive thing. The only negative point I found about night dialysis is that I had to take phosphorus because I was deficient in phosphorus just 3 months after starting night-time dialysis. But this is tolerable considering the benefits of night dialysis (possibility to work during the day, less medication, no pain in the feet...). In Rennes, I was registered on the transplant list, but with a temporary contraindication (CIT), because I had a bone defect on my left hip as well as the Hepatitis B virus.

After these two issues were resolved, my CIT was lifted in December 2019. I received a transplant on 4 January 2020, but unfortunately the transplant was not successful due to a thrombosis of the graft vein. The graft was removed in less than 24 hours. A great hope was lost because I developed a lot of anti-HLA antibodies 3 months after the transplant. To this day, these antibodies have not disappeared, and no solution has been proposed to me.

Because of this failure of the transplant and the conditions of the health system in Guinea, it seemed impossible to see my family and my relatives because my birthplace (Tougué) is 500 km from the capital, Conakry, where the only dialysis centre in Guinea is located, and the journey is long and difficult.

In February 2021, I was sad to lose my dear father in Tougué. Because of this death, I made the decision to return to my family in May 2021.

Decision to go to Tougué

The AUB Santé Foundation, which focuses on home dialysis, offered to train me on the use of the NxStage® machine. The training was mainly focused on the following:

- Knowing how to correctly set up the machine and manage the alarms independently

- Mastering self-puncture with the required hygiene

The main difficulty was to provide in Guinea the 5-litre bags of dialysate, which are used with the machine at a rate of 40 litres per dialysis session. During my training, AUB and I continued to look for a way to deliver these bags to Guinea. The AUB pharmacy told me that it was important to follow hygiene and ‘temperature maintenance standards’ for the bags during shipping and in Guinea. The required temperature is between 15 and 30 degrees. The plan was to store the bags at a satisfactory temperature conditions in a pharmacy in Guinea before my departure for Tougué. During the Conakry-Tougué trip, it was possible to ensure transport in the best conditions in an air-conditioned car. Once in Tougué, the bags would be stored in the air-conditioned health centre. It remained to send the bags.

I contacted a friend in Senegal who visited all the big pharmacies but could not find any. I considered sending them by sea. I asked on a WhatsApp® group of Guinean friends if they knew of anyone who could arrange for the transport of materials to Guinea by boat. I quickly got an answer and the contact information of a person who does this once a month via the port of Havre. I also asked the dialysis centre in Conakry how the dialysis material was delivered. The centre put me in touch with the director of the SOGUIMAP company (Mrs. RACH). This very benevolent person offered to have the bags transported free of charge. In the meantime, the AUB Santé pharmacy had also contacted the forwarding agent of this company, which is based in Rouen. In short, we were able to transport two pallets of dialysate: one by boat from Le Havre and the other via Mrs RACH. AUB Santé decided on this arrangement this for security reasons. The bags arrived in Guinea

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