Saimi Hoyer: “I can live a full life – thanks to blood donors”

Saimi Hoyer, 50, who lives in eastern Finland, tells us that ever since her childhood she has been susceptible to illnesses such as troublesome bouts of sinusitis and intestinal infections.

“I’ve always caught all the germs going”, she explains.

Why she was ill so often wasn’t fully understood until she was well into her adult life. Treatment addressed only her symptoms, but no-one knew why she had them.

“It’s been a sort of vicious cycle – when one infection was treated, another emerged somewhere else in my body.”

Rather alarmingly, over the years it became clear that antibiotics were not the answer for her recurrent infections. Two overlapping courses of antibiotics prescribed while abroad had a devastating effect on her health, leading to lengthy stays in hospital.

Looking back almost 15 years she remembers, “In addition to diarrhoea caused by Clostridium difficile due to the antibiotics, I got an adenovirus infection and sepsis caused by Salmonella. It was a really hard time – I had small children and had to stay in hospital for a long time.”

Plasma therapy to the rescue

Having been close to death, the root cause of her symptoms was finally discovered thanks to painstaking diagnostic testing. She has hereditary hypogammaglobulinaemia, a disorder characterised by low levels of certain antibodies. Patients with this condition are susceptible to recurrent bacterial infections.

“Nowadays these immunodeficiency disorders are diagnosed faster, but for me it took a long time”, Saimi says.

Saimi wants to thank doctors Mikko Seppänen, Timi Martelius, Eero Mattila, Asko Järvinen and Eeva Ruotsalainen from Helsinki University Hospital – the last of whom are infectious diseases specialists who became known to the public during the coronavirus pandemic.

“This team saved my life then”, she says.

The right diagnosis led to the right treatment. Hypogammaglobulinaemia is treated by means of regular transfusions using appropriate doses of gamma globulins to provide the patient with the necessary antibodies. The treatment is lifelong. The medicinal product is made from plasma donated by blood donors.

Saimi Hoyer visits Savonlinna central hospital once a month to get the antibodies she needs. The plasma is administered directly into a vein over a period of three hours.

“Usually, I just turn off my phone and fall asleep. It’s quite comfortable”.

At first, she had to travel to Helsinki for the treatment, but then it turned out there was a doctor specialising in this rare disorder and its comprehensive treatment in Savonlinna too. This was Eija Ruotsalainen.

“It’s amazing that there are doctors and nurses outside Helsinki with such a wide knowledge of this disorder and its treatment. I’m really happy about that, because there are patients like me all over the country.”

There was a time when the plasma therapy had to be interrupted for a while because Saimi had developed asthmatic symptoms, but now she tolerates the treatment again. Actually, so well that the treatment interval has been extended from 4 to 6 weeks.

“Each day that my body tolerates this treatment, I’m happy to get one more month. I can say that with this treatment I can live a normal life, although I must be careful when there are norovirus or other outbreaks, because if I catch it I’ll end up in hospital immediately.”

The effect of the plasma therapy is clearly visible between the treatments.

“The day after the treatment is…well, it’s like I just answer “yes, yes” to everything. Better not call me then”, Saimi says with a laugh.

“Then I start to feel better, and the following couple of weeks are really good. Then, about a week before the next treatment, I start to feel more tired, until my energy levels get boosted again after the next treatment.”

A gift called life

Saimi Hoyer belongs to Imppu, a peer support group for immunodeficiency patients, in which members actively share their knowledge and experiences.

“This disorder doesn’t show, and you can easily feel like you’re alone with it. So, peer support is extremely important, and I’ve both received it and tried to offer it to others. It’s not a weakness to have a chronic illness, I’ve inherited this disorder.

From the bottom of her heart, Saimi wants to thank everyone donating blood and plasma.

“I’m so happy about my situation at this point, I can enjoy life with my children and my friends, and I’m also fit enough to work. On behalf of all patients like me, I want to thank all blood donors who keep giving us the gift of life – I wouldn’t be standing here without you.”