10 Jan SERENA’S STORY
“My relationship with kidney disease started at the prime of my life in my twenties”.
This is how Serena’s story began, a young woman, a mother, who was diagnosed with immunological glomerulonephritis: her immune system no-longer recognizes her kidneys and tries to reject them.
Today, Serena talks about her kidney disease from the blog she started to share her experience with others, to exchange information, suggestions and to share feelings. Because “together is better”, says Serena, and fortunately she had her family and her husband always by her side.
After the initial treatment based on cortisone and immunosuppressants, which changed her physically, in the end Serena had to resort to dialysis: “That is where my darkest hour began. I didn’t know what to expect and in the meantime my body was starting to shut down”. I had so many questions, the fear of dying, of not seeing her son grow up, that her life would be hell. When it was time to put in the central venous catheter, she thought of dialysis as her enemy. An enemy who, however, soon brought her back to life.
“I changed my mind about who the enemy was less than a week later. Undergoing dialysis gave me strength, it gave me back my energy, appetite, hope; it became my best friend, even if we quarrel a lot. I do home haemodialysis, 6 days a week, it takes two and a half hours and I am helped by my husband (a saint of a man, did I already say that?). He did the training course with me at the hospital to learn how to use the home dialysis machine and how to manage the catheter before taking everything home”. The first few days alone were difficult: it took a lot of effort even to change a 5-cm gauze. “When we think about it we laugh like crazy! Now he has an incredible amount of experience and I’m much more relaxed”.
Managing the catheter is difficult due to the risk of infection: it mustn’t get wet and the dressing has to be changed often. For Serena, it also meant not being able to curl up when she slept and feeling sick every time she had to take off a top. “I kept the central venous catheter for 8 very long months” – she says – “which made me lose touch with my body and especially in the summer, the saltiness on my skin, playing games in the sand with my son and the strap dresses”.
Now she does dialysis through a fistula using the Buttonhole technique. “I have very deep veins – explains Serena – which are difficult to reach even with large dialysis needles, which is why I had to undergo two operations. We went to the hospital every day for at least three months for fistula dialysis. Initially the doctor inserted the needle (and here I must say that I have been very lucky, I have always come across wonderful, helpful, competent and passionate doctors and paramedics), then once things had finally stabilized, Stefano – her husband – began to try. We continued to go until we felt absolutely certain that we could do everything by ourselves and then finally back home”.
Serena has had more than two hundred dialysis sessions and is about to enter the transplant list for a new kidney.
“Thanks to dialysis I have my life, my family and time ahead of me”.