Thursday, October 1, 2015

Alicas experience, a bone marrow disease

Alicas experience, a bone marrow disease
My name is Alica, I was born on 04.03.1997 and 18 years old. December 2014, I  was diagnosedwith MDS (Mylodysplastisches syndrome). It started with me but already at 2 November 2014th One evening when I had to get up at the TV to make out, I fell into a brief swoon and banged with all my weight on my head. Thereupon arose at a CT of the head, a brain hemorrhage that of my low platelet (In fall they were straight times in 6000) was triggered.

Then I was transferred to a specialist hospital in Hamburg-Altona and laid there for 13 days in an induced coma. When I woke up, I lacked any memories. I could not speak or move, but I learned quickly after a few weeks.

When I again reasonably well recovered, has been studied in Altona, whence came to low platelets. It has some time before they have found that I have a rare blood disease, namely an aplastic anemia. With this diagnosis I was finally released over the weekend and should introduce myself for further treatment at the University Hospital Hamburg Eppendorf.

The first day in the ambulance was very exciting and stressful at the same time. When the doctor talks finally we were explained everything about the upcoming bone marrow transplantation (BMT).

On December 28, 2014 I was accepted for the whole Preliminary stationary on the children. 5 ENT, ophthalmologist, lung CT, MRI of the head, dentist, ultrasound of abdomen, ultrasound of the heart and another bone marrow biopsy I had to go through me. When lung CT finally came out that I have a fungal pneumonia and against every day had to get a drug that can be administered through the vein. The antifungals (Ambisome) I unfortunately very poorly tolerated, I had several times passed after administration. After I've learned that I have a lung fungus came right nor a message.

The results of last KMP (bone marrow aspirate) are there, the fact show that I do not have aplastic anemia, but myelodysplastic syndromes (MDS). With this diagnosis, I started by using the port facility and the CVCs in the KMT.

My weeks on the KMT-Station
On Wednesday 14 January started with me at all after my doctor had brought me to the station and the KMT sisters greeted me all the love.

Now it's getting serious! My Two older brother was 100% bone marrow donors and the chemo began the following day. The first two days I noticed from the chemo is not much, except that I was very tired and I slept a lot. But the following day plagued me nausea. I could not eat, had to throw up again and just felt like a bad stomach infection. That with the nausea continued until the end of chemotherapy, which for me and my mom (with moved into my room) was, of course, damage morale.

End of chemo was finally the day 0 and I got on 01.22.2015 the bone marrow from my brother about the CVC. That was a nice moment that my mom has even detained with her cell phone. The following days I always got a particular drug, which should ensure that the graft is not rejected. However, this dose of the medication had a bad side effect, namely mucositis (stomatitis). At this stage I was unfortunately also dependent on strong pain relievers. A few days later, I realized slowly that inflammation in the mouth a little bit better. A sign that my first leukocytes are there and start to repair his mouth.

On day +18 after transplantation finally you could then look at the first leukocytes in the blood. First it was only 100 500 and then suddenly as fast as I could not see, they had already risen to 1500th

Then it was already far and I was with 1,500 leukocytes finally by the KMT station to the children1. I packed my bags and was brought on a stretcher to the station children1.

That was a feeling!
Inhalation After three weeks in a small room for the first time again fresh air from outside! On the children1 I was still about 2 weeks to get back to learning to eat properly and to be able to swallow the tablet whole. When at last the time has come and I was home, I could not wait to sleep in my bed, and finally come to my family there. But the first time at home we had to adhere to very many rules:

Once a week the bed re-apply,
Towel daily. Change,
Use disposable towels,
out only mouthguard,
many food regulations must be observed,
Daily showers. and lotion,
bd measure. Fever
and always the skin and
observe and inspect the bowels.

And most important, of course, two to three times can check the week in the ambulance to the blood. Now I'm on day +180 and on the road to rehabilitation in the Katharinenhöhe

Best Regard Alica

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