Patient story by Susanne Schwertle

Onset of aplastic anaemia

I had just finished my first semester of studies and had been living with my son in my first own apartment for six months. At first I noticed bruises that I ignored. When I drove home in March 2016 during the lecture-free period, I had the idea of going to my family doctor. I hadn’t seen a doctor in years, the last time three years ago because of my pregnancy. But nothing more came of that. During the night I got a heavy nosebleed that wouldn’t stop. It wasn’t until noon that my mother drove me to the family doctor, who referred me to an ENT doctor. But when she checked my blood count a little later, she said I should go to the emergency room immediately. My GP called the emergency room to provide some information about my condition.

Then I came to the hospital. Acute leukaemia was suspected. At this point I would like to say that it is very important to diagnose aplastic anaemia fairly quickly. I was lucky because I came across a very knowledgeable doctor. Within three days he ruled out the leukaemia and told me of the diagnosis of aplastic anaemia. Unfortunately, he was not familiar with the disease and referred me to the Greifswald University Hospital.

At first I was relieved not to have laeukemia and now to know where I am … I read a lot about the disease on the internet, which was of little help to me at the time.

About a week later I was called to the university clinic and the doctor examined me, asked me questions and looked quite relaxed. I got the next appointment with him a week later. That didn’t happen because I got heavy nosebleeds again and ended up in the emergency room at my city’s hospital. There I said I needed platelets to stop the bleeding. Nobody cared. That’s why ENT doctors came to obliterate my nose and stuff it with tampons. Nobody believed me that this procedure was completely useless. Only the doctor who diagnosed the disease helped me and supplied me with platelets. Then I was admitted to the Greifswald University Hospital, where I was told a lot about aplastic anaemia. Then I stopped my studies, gave notice of the apartment and moved in with my mother again with my son. My life outside of the disease was put on hold for an indefinite period of time.

For the onset of the disease, it is important to get to the right doctors, i.e. those who are familiar with aplastic anaemia. This avoids unnecessary interventions such as sclerosing the nose. It is also advisable to get as much information as possible from doctors. This applies, for example, to sport / exercise behaviour, diet, dealing with pets, etc. This avoids injuries with internal bleeding and the infection of diseases which, against the background of aplastic anaemia, can be very dangerous, even life-threatening.

The way to therapy

For a few months, from March to July, I was a regular guest in the outpatient clinic at Greifswald University Hospital. I picked up platelets and erythrocytes every week, slowly developing a feeling for when platelets in particular were running low in my blood. Incidentally, I ended up in the hospital three times during this time, due to a poor general condition. Once I was plagued by fat legs and nausea, and another time I caught a virus. But after a week I was always outside. Now I knew who I hadvand could turn to. I discussed everything with the specialists that other doctors wanted to do with me. For example, I refused a gastroscopy because the risk of bleeding was simply too high.

Then the doctors came up to me to discuss therapy. I was advised to have a bone marrow transplant and the search for a donor had already begun. I felt a bit taken by surprise by that. I knew that there was another way of therapy, namely treatment with immunosuppressants. I got a second opinion from a specialist in aplastic anaemia in southern Germany by phone and email. He said that if I were his patient, he would have treated me with immunosuppressants long ago. I was a bit confused because somehow everyone advised me differently. I was thinking that I was afraid of the chemo that would be needed in a bone marrow transplant. I was also afraid of dying in the process. On the other hand, I wanted to get completely healthy again, get rid of blood transfusions as quickly as possible and not have to swallow pills forever. All of that would have come to me during therapy with immunosuppressants.

So I decided to have the bone marrow transplant. I had come a long way in making decisions and now I was sure …? No. Aplastic anaemia is not a piece of cake and the road to recovery is long and full of risks. No matter which variant you choose.

When making a decision, you should seek advice from several doctors, if possible, and get a second opinion. But you should also listen to your gut instinct and take personal aspects into account. For example, a long hospital stay in a single room is necessary for a bone marrow transplant. Depending on what type of person you are, this is easier for you or it can be a significant psychological burden. At this point I would like to thank the people of Aplastische Anämie e.V. for their support. You really helped me a lot in making my decision, maybe even more than the doctors. I would also like to thank you for the symposium on aplastic anaemia in Berlin, which my siblings were able to visit on my behalf, shortly after the disease broke out.

The advantage is that I had enough time, around 2 months, to make the decision. It was also a good thing that I didn’t know everything down to the smallest detail beforehand. The main goal of getting well was in the foreground and my chances were not bad at all. So I bravely went to the hospital for the “final”.

The therapy

Before the chemotherapy, I had another thorough check-up: heart, lungs, bone marrow, etc. After that, I was supposed to have been given pretty tough chemotherapy for 5 days, then whole-body radiation and then finally the bone marrow transplant. Surprisingly, that didn’t work out. The pathologists had examined my bone marrow and found that there was no longer any aplastic anaemia. At first I thought of a spontaneous healing, which is supposed to happen. So, as if in shock, I left the hospital. The doctors from the ambulance were just as surprised as I was. My case was presented again at the tumor conference and it was decided that the disease was present and I should have the bone marrow transplant.

These negotiations gave me some time. I spent a lovely week with my family on the Baltic Sea and was able to say goodbye to acquaintances and friends because they wouldn’t see me for a long time.

Armed with books and painting materials, I went to hospital. I was in a relatively good mood. On the second day I went to the full-body irradiation, which took place in another clinic. That was the last time I escaped from the hospital. Then chemotherapy began. At first I didn’t notice anything, I felt good. But at some point I started throwing up. I couldn’t eat anything without vomiting right afterwards. My hair fell out. After 6 weeks in hospital I was very discouraged. It must be said that I was not allowed to leave the room and most of the time I was “hanging on the hose”. First it was the chemo that dripped into me, then the artificial nutrition and antibiotics. The visits from the psychologist, the physiotherapist and my mother were a change. My 3-year-old son was not allowed to go to the ward because children under the age of 14 are not allowed to enter the ward due to the risk of increased germ transmission. That sounds sad, but it’s reasonable. My little one didn’t miss anything. I’m so glad he didn’t see me like that. There’s a telephone for that. I knew that I was always there for him in the first time when I was still healthy, and thus had a stable relationship with him that could not be broken by 10 weeks of separation. Of course, I was sorry not to be able to experience his current development steps up close.

After about 8 weeks of hospitalisation, during which I almost never left the room, I had a real mental depression. I thought everything was stupid. The nurses checked everything, even my urine volume. Every morning at 7 a.m. I was dragged out of bed so that I could not do anything. I felt at my mercy, longed for my family and developed serious doubts. Wouldn’t the other therapy have been better? Does life still make sense at all? Will I ever get well again? I was indifferent to everything, spoke little to the nursing staff, and had no more concentration to deal with books and painting materials. The doctors advised me to get up anyway, to sit down. Otherwise my muscles would have been completely ruined.

After 10 weeks in the hospital, I was discharged, but still had to swallow a lot of pills. Nausea and vomiting were still an issue. Just a few days after the longed-for discharge, I was returned to the hospital for four days. My kidneys failed. Back home, I drank 2.5 liters a day for fear of the hospital. A real challenge with the existing nausea.

The time after

I was on rehab for three weeks. I lost a lot of weight, I still weighed 48 kg and was 1.69 m tall. The nausea had gotten worse and I could hardly eat any more. I also had an ulcer on my tongue, which caused terrible pain. I came back to the hospital. This time nothing worked. I couldn’t read, didn’t feel like painting, just wanted to lie in bed. I completely ignored the doctors’ advice to get out of bed. Two psychiatrists were sent to me and I received intensive care from the psychologist. That helped somewhere, but in the four weeks I was really depressed. I also vomited almost all the time and felt misunderstood by the staff. I thought of just falling asleep and never waking up. I spent Advent, New Year and my birthday in the clinic. At Christmas I was allowed to go home at my own risk and only spent the nights in the hospital.

This low came to an abrupt end. The nausea subsided. The ulcer on the tongue hurt less. I was able to eat and drink to some extent again. After four weeks I finally left the hospital and was happy.

I’m home now. Every couple of weeks I have a check-up appointment at the Greifswald University Hospital. I’m on sick leave for another 6 months. The disability pension and the severely handicapped ID have been applied for. My family, i.e. mother and brother, shop for me, do most of the housework and take care of my child in places where I cannot. Without my family, my child would have had to go to the home.

It will probably take some time before my leukocytes appear again in normal numbers in the blood and I can walk around people, especially crowds, without hesitation and mask. I lost my studies and my friends. I don’t yet know what the future will bring me. I am grateful to be healthy and somehow hope for the best. In order to keep this hope, I have voluntarily given myself into therapeutic treatment. I speak to a psychotherapist about every two weeks. Receiving visitors at home is still a little difficult. My friends from college live too far away and the few who are here have children or are too busy. The doctor advised me not to visit children for another two months. So the psychotherapist is the only person who does not belong to my family and with whom I can talk undisturbed.

Closing words

Sometimes it feels more like a shock to me to be healthy again or to be completely healthy. I actually want to be happy, but feel like I’m slipping into a depression. This uncertainty “What can I still achieve?” “What does the future bring?” is somehow always there. There are a thousand things that I have missed in the clinic that I would now like to do. But do I dare? Nothing is like it used to be. Having looked death in the eye somehow makes me vulnerable and insecure. I know that other people have much worse illnesses and are less supported by their families or have none.

I often think of the donor, whom I can contact in six months, if he or she agrees, to say thank you, also on behalf of my son.

Thanks to the good education and treatment of the doctors, I always had the feeling that I had aplastic anaemia and not aplastic anaemia me. My life was probably never in acute danger because everything went smoothly without any major complications. In countries with poor medical care, I would have died from it.

I also think back with gratitude to the patient nursing staff. Many components and the help of many people helped me on my way out of illness and into health.

Regarding chemotherapy, I can say that it just wrecks the body a little. I see it as a necessary evil that I have chosen to do. Overall, I got rid of the blood transfusions very quickly. This is particularly important for the internal organs. The body automatically absorbs too much iron through stored blood, which is deposited in organs such as the liver, heart and kidneys. On the other hand, there are drugs that remove the iron again. I also had half an ovary removed from me before chemotherapy, which is now frozen and waiting for me. Chemotherapy can affect fertility and I still want to have children. For me, being able to have children is part of full recovery.

Aplastic anaemia stole everything from me. My friends, my “almost partner”, my studies, and sometimes also my child. I think I don’t have the courage to start from scratch a second time. In itself, aplastic anaemia is not the end of the world if you have found your place in life. I was just looking and my search was stopped by the disease. I’m too old to get BAföG (subsidy for students) a second time. In this way I am healthy, but I no longer have any prospects. I lack the strength and optimism to find another apartment and friends in a strange city.

Susanne Schwertle