Patient story by Ina Specht

It all started with the birth of my second daughter in November 1998 while a blood count was taken at the time of delivery to rule out possible infections. It was noticed that I only had 37,000 platelets. My HB was 8.0. In the clinic I was told that something like this could happen after a birth, but I should have my blood count checked regularly. Until February 1999 the platelets rose to 67,000, the HB improved with the ingestion of iron supplements a little too. But in the same month there was another slump and the platelets dropped back to 38,000. Thereupon I had the first puncture at the haematologist and 5 -6 weeks later I received the devastating diagnosis. The conversation with the haematologist was unfortunately not very informative regarding treatment options and prognosis. He had an appointment for me at Hanover Medical School up to which there were still 14 days, but in which everything turned out very differently.

I spent the first week with my husband and 2 children at the Baltic Sea, the first four days only with the thought that this would be it for me. Then on my 30th birthday I received a call to redeem from my sister who had struggled through the internet and all kinds of things to look up aplastic anaemia. That’s how I found out about IST for the first time and the possibility of bone marrow transplant. In contrast to “no hope“ that was quite a lot and my optimism was halfway returned. As soon as I got back from vacation, I got the first bruises on my thigh. I called my GP, who had been informed about my illness by the haematologist, and received the information from him that this was quite normal with this disease. I was also given clever tips like to buy some wipes in the pharmacy that I should put on wounds, so that the bleeding would be stopped faster. When I got new bruises the next day I called the haematologist. He told me to go Hanover Medical School immediately. Accompanied by my husband and our 5 month old daughter who at this point was still fully breastfed except for one meal, I made my way. We were referred to the emergency room because it was Maundy Thursday afternoon and there was no one in the ambulance. 10.000 platelets, an HB of 8.0 and Leukos of 4,000 required an immediate need for action. I had to stay in the clinic overnight and at approx. 11:00 p.m. received my first platelet transfusion. It was a really bad night for me in which I shared my room with a woman who was in rehab and vomitted all night. In addition there was the fear of the now acute threat from the illness and pain from spontaneous weaning.

At home, my little daughter was begged by three adults at the same time to drink from the bottle – with the result that daddy then poured it into her with the teaspoon. Three exhausting months began. In the haematology outpatient clinic, things started very badly at first. First of all, I was called in again for a puncture. After 4 hours of waiting, I was told that this would only be done next time, as some report was still missing. I was flattened. In the meantime, my two siblings were being typed, which the haematologist who had made the diagnosis had arranged. During this time, I had to undergo all the necessary examinations for the BMT. This included having 3 teeth pulled out that showed any possible inflammation in the X-ray. Shortly afterwards, it was discovered that my sister would be a suitable donor. My doctor thought that was great and immediately called over his colleague from the BMT outpatient clinic. He in turn only asked my age and then said that I was too old for BMT, as the treatment guidelines stipulate the following:

– Up to 25 years of age with severe aplastic anaemia (SAA): BMT
– From 25 years of age BMT only in the case of very severe aplastic anaemia (VSAA), otherwise IST.

Since I had SAA at that time, only IST was considered. That day, my emotions were on a rollercoaster and would remain so for the next few days. The next day, my blood count was so bad that the vSAA and thus also the BMT was mentioned again. Over the next few days, my granulocytes, which made the difference between severe and very severe for me, oscillated up and down and the doctors’ opinions back and forth. I felt totally fooled at one point. My nerves were pretty much shot. I thought about changing clinics and finally called Prof. Bergmann from Ulm University Hospital, whose name I had taken from a report on the treatment options for aplastic anaemia. It was such a good conversation that this man alone would have been reason enough to change clinics, but he encouraged me, answered all my questions and told me that I was at one of the best addresses with Professor Ganser in Hanover.

Strengthened by this conversation, I told my doctor what I thought the next day and from then on everything went very well. Every day I came with new questions, which I always wrote down in a notebook at home, and my doctor always took enough time to answer them for me. Shortly afterwards, they decided to treat me with IST. I never got an answer to my question whether the tooth extraction could have been avoided…………………. At the end of May, the therapy began with the inpatient part for the infusion of ALG. Further medication:

– Tavanic 500 mg / day (antibiotic for prevention until the neutrophils were at 1000)

– Ampho-Moronal 6 pipettes / day against fungal attack in the mouth
– Orgametril 2 pieces / day (permanent pill to suppress menstruation)
– Sandimmun Optoral 375 mg / day
– Pantozol 40 mg 1 tablet / day
– Decortin H tapering off over a month (cortisone against the side effects of ALG)

– Neupogen 30 2 syringes daily (to stimulate the white blood cells)

After starting the therapy, nothing happened for 4 weeks. Then, very slowly, the intervals between transfusions increased. This time was once again very exhausting. I often had to go to the clinic every day for check-ups, as it was impossible to tell whether I needed a transfusion after one or two days. On 21.07.1999 I finally needed my last blood transfusion. The values started to rise again. Until November 2000 I took the Sandimmun relatively unchanged, so that the level was always between 140 and 170 ng. Then a slow reduction was started until I swallowed the last tablet with a glass of champagne in April 2002. Since that day, my blood count has been stable. I have over 200,000 thrombos, a HB of 14 and the leucos are also always in the lower normal range. I am very happy that everything went so smoothly and with every day that I spend in good health, the fear becomes a little less. The contact with a “fellow sufferer”, which I was able to establish through this association, gives me a lot of strength. I find it very helpful to talk to someone to whom you don’t have to explain your feelings, because they know what you mean. Therefore, I would like to thank you once again for your work and I am looking forward to meeting you at the Annual General Meeting on 8 March 2003!

Hiddestorf, February 25, 2003

Contact by email at fette.schnecke (at) htp-tel.de