My illness: From 2006
In August 2006 MDS-RAEB
was diagnosed, after I had pain in the legs and
From then on, regular blood examination took place, and a
permanent increase of
the illness was noted, until the state became critical.
The over 4 years each abt. month the blood new and new exams
No other medicine could be used, exept pain reducing pills.
As single option, in September 2010
a stem cell
transplantion was carried out, which
resulted in the cure of the illness MDS
, where the
donor was my brother.
The announced chemo
could be carried out in an
unexpected short time, and I could leave the
hospital on September 24th.
I want to express my thanks to all, who contributed
with their prayers to this good result.
However, this does not mean that all is over, there
are still many possible complications.
My immun system is totally down, and has to be
reconstructed during the next 6 months.
I have also lossed all my vaccination memory, and
each virus my constitute a danger to life.
During the coming weeks I have to live like a hermit
and have to prevent contacts with
other persons. I have to visit daily the hospital to
control my state.
I should be able to answer emails and I live here at
home more secure than in the hospital,
where illness germs spread around.
Due to complications I had to stay in the hospital
since 5th of October again.
As long as I am hospitalized I cannot send any
documents and descriptions. Sorry.
Since Oct. 12th I am back at home. Technical
documents can be sent again,
and Emails can be anwered also.
Immun suppression will continue
to about February 2011, and during this period
contact with other persons should be avoided, as far
Today I have to go to
hospital, due to strong diarrhea.
Possibly caused by C.Difficile, which would mean
1-2 weaks stay at hospital.
During this period no distribution of documents,
and may some Email.
Update Dec 6th 2010
My guess for "C.Difficile" was
correct. They detected this in the hospital.
However, I have not to stay at the hospital. My
treatment with antibiotica during
3 weeks will be at home, just with more caution.
Shipment of documents is again OK.
I went with headakes, cough, and a congested
nose to the hospital.
They measured the blood values and found,
that the inflamation indicator was 10 times
(CRP over 90), and bad values of the liver
(ASAT and ALAT 3 times too high).
Then they made a smear to search for
viruses. Quickly came the result:
Influenza virus H1N1 or H5N1 (still in
invest.). And this during my phase of
suppressed immun system.
This is treated normally by antibioticas,
but for me not possible, as the antibiotica
the still present C.Difficile ...
Then they decided for Tamiflu ...
The present state is highly dangerous and in
2 days I have to go back to hospial for
They did not want to keep me there, due to
risk to the other patients ...
therefore out as quickly as possible ...
Update 5th February
Yesteday I was again in the
hospital. The high CRP value dropped back to 20,
but the high liver values hold on. aaMy feeling is
much better, and the headakes dis-
appeared, but there are complaints due to the
Treatment with Tamiflu and other drogs shall
Next check at hospital: 10th of February
Update 10th Febr.
Today I was in
the hospital for control.
The blood cells are still on their way in the
right direction, the inflamation indicator is
back to normal, but the liver values are
worse. ASAT is 132 and ALAT 148.
There is no explanation why, it might be a
liver rejection reaction. Hepatitis was
and is negative. We have to wait further in
the hope, that the values return back
to normal ...
17th Febr. 2011
Todays results from hospital:
The liver values are 10 times too high, as a
result of a liver rejection of the new cells ...
Treatment requires a high immune system
suppression dose (Sandimmune - Neoral),
strong Cortisone (Prednisone), Ursofalk and
Calcium (at home).
Next controls: 18th and 22nd February in
Update 23rd Febr 2011
Now I was again in control:
The values are all improving, and that is also how
I feel: much better.
One further week with strong medicine, and then we
hope that the values
will be back at normal.
Update 23rd March 2011
Again control in hospital.
Liver values are back to normal, but catched a cold
Continue with all medicines, also with immun
very sensitive for all germs.
30th March 2011
Very positive result:
The result of the last examination is, that the bone
marrow has a full remission!
That means, that my original illness is fully cured!
Now, only the side effects have to disappear, as the
immun suppression can be reduced
only in small steps. All is on its best way !!!
Update 16th May 2011
Up and down.
With my last report I was too optimistic. One
relaps follows the other.
Pain and headache caused by the high immun
suppression. And the doctors do not allow
to reduce the suppression due to the danger of
transplant rejection. Therefore I am
further very unstable with little ability for
work outside, but with a lot of hope.
Update 4th July 2011
Now I really feel better.
Three weeks no problems, and good results of
The immun suppression is now reduced and I feel
It seems, that soon I will be back in fully normal
condition, and I can again work
outside and do my hobby works. Wonderful !
10th November 2011
I was in the hospital for a complete medical
Most values are in the normal range, but the liver
values are much too high.
They have to be controlled by a special medicine.
However, important is how I feel! And I feel very
Indeed my efficiency is still weak, as I become
tired after short time when exercising.
The immun suppression continues on low level, but
I am very happy with the general
result of the treatment. All my pain I had in the
bones and in my joints have
disappeared completely, and my look is again well
Update 2nd December
Yesterday a new check in the hospital:
The liver values went up very strong, about 10
times the normal value!
The immun suppression has to be set to maximum,
and other medicine
is added. I still feel very well, but the liver
defect may produce other
Further examination follows in the next days ...
The liver values are going back, but still about 3
times too high. Still high
immun suppression and other medicine. The skin is
itching in several
locations, but I am stilll happy with the course
of the treatment. Such side
effects one has to accept. I feel generally well,
without pain, and thats
a good thing.
Tendency: Further improvement.
Upd. 30th December 2012: unstable
From the 2nd to the 10th of January I had
to stay in bed with a strong cold.
The eyes were red that I nearly could'nt see,
headache, fever, sore throat, swindly,
palpitation, weakness - all the consequence of the
high immun suppression.
Now I feel again better, but still: unstable.
Update March 1st, 2012
The check in the hospital revealed, that all values
are nearly back withing
normal range, and my feeling is good, after a period
of complaint, as a
consequence of the immun suppression, which made it
necessary to remain
in bed some time.
1st April 2012 : good!
Now I had nearly during one month stable,
With that I am very glad.
Update 14th April
2012 : good values!
This week I had a full examiantion at the hospital.
The result: All values are practically in the normal
range, and this
confirms my good feeling. Wonderful.
11th Dec. 2012
Since April I had several relapses.
In the lung a fungus appeared and had to be treated
with a strong (and expensive)
medicine. This was successfull and the examination
in the hospital today showed,
that nearly all values are back in the normal range.
And I feel very well!
Since one month I am without immun suppression and
any further medicine.
I can walk, run and climb the staircase like a jungster!
Now, we can say that my curing has terminated!
I want to thank all who have been praying for me, as this
probably not have been possible without this help.
Upd. 20th.June 2013
In my last report I was too optimistic.
End of May I received a lung infection and was with 40 deg
fiever at the hospital.
With the help of VFEND and ROCEFINE the CRP value could be
reduced from 160 to 8 within
a week. However, the lever was attacked and the lever
values were 5 to 8 times too high...
Now I have a treatment with NOXAFIL and Ursofalk to reduce
the lever complication.
Upd. 28th.July 2013
Now my lever values are back to normal values, and I feel
I can continue my work in my projects with full strength.
Now I hope it will remain so!
Upd. 20th.October 2013
Still all in best order!
Healthy, happy and stable.
15th February 2014
I suffered a
was 2 weeks in UNI Hospital in Basel, deaf-mute at
After a week, I began the hear a little, and
I learned to speak some words,
and it was improving from day to day.
After 2 weeks, I could return to home to sleep and
to eat, and I loved to go home!
3 times per week, I had therapy in the "day
clinic", and the other days
I could remain at home.
The logopedics helped me to learn to speak
and to hear..
My woman Patricia gave me a lot of hope for better
Upd. 22th May 2014
Since 3 months, I am 3 times per week in treatment in
specialists, where I obtained help to improve to speak and
Now I feel me so good, and I like to practive my hobby.
Upd. 10th August 2014
Continuing 2 days per week in clinic for more
speaking/hearing, brain activating and physical
All in small steps, but still more improving.
I feel me happy and feel me good.
Upd. 23th November 2014
6 month intensive therapy my state has
improved a lot! I can speak and write
Indeed, I are some slower than before, but I
feel me good, and I hope, that it will remain so
5th May 2015
speaking still have some
but I feel me good and it
will stay this way.
Upd. 2nd June
state is today is good, but speaking is
more difficult then before, this is the same
as a year ago.
Upd. 1st February
change of my state.
I still have to visit the speech therapy, in order
to keep my speaking/listing ability.
1st October 2018
change of my
but I do not
more visit the