My illness: From 2006 to 2010
In August 2006
MDS-RAEB
I was diagnosed, after I had pain in the legs and joints.
From then on, regular blood examination took place, and a
permanent increase of
the illness was noted, until the state became critical.
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
and
stem
cell
transplantation 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.
Visits:
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.
Update 7th October 2010
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.
Update
27th
November 2010
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 as possible.
Update Dec 4th 2010
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.
Sorry
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.
Update 2nd February 2011
Today 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 too high
(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 would reactivate
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 control.
They did not want to keep me there, due to risk to the other patients
...
therefore out as quickly as possible ...
Update 5th February 2011
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 liver problems.
Treatment with Tamiflu and other drogs shall continue.
Next check at hospital: 10th of February
Update 10th
Febr. 2011
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 checked
and is negative. We have to wait further in the hope, that the values
return back
to normal ...
Update
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 hospital.
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 and cough.
Continue with all medicines, also with immun suppression, therefore
very sensitive for all germs.
Update
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 examination.
The immun suppression is now reduced and I feel good.
It seems, that soon I will be back in fully normal condition, and I can
again work
outside and do my hobby works. Wonderful !
Update 10th November 2011
Today I was in the
hospital for a complete medical check.
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 good.
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 and healthy.
Update 2nd December 2011
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
negative results.
Further examination follows in the next days ...
Upd. 30th December 2011
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.
"Remains hopeful"
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.
Update 1st April 2012
: good!
Now I had nearly during one month stable, good condition.
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.
Felix
Meyer