11/29/13 – I
am trying to ask as many questions of my doctors so I can have a better idea
what is ahead of me. Yesterday when I asked one of the doctors he said: “You are
like a new born baby, you have no immune system and you have to give it time to
develop.” It seems that once the stem cells are infused in takes about 14 days
for them to find their way to where they need to go.
Speaking to
another doctor I was told that my white cell counts will go down before they
start to rise. A little at a time my counts will start to increase but this is not
something that happens overnight. Once I hit 100 days after the transplant the
expectation is that I should begin to see some stability with my new immune
system… but that is by no means the end. I will still need to be monitored to
make sure I am not running into issues like graft versus host disease.
To find more
information on the process I logged onto BETHEMATCH.org Here is some
interesting information I found:
Early recovery: Days 30-100: This can be a time of transition in your recovery. You will
probably be leaving the hospital though you will still receive frequent
outpatient care at your transplant center. Your transplant team will continue
to care for you and watch you closely for infections and other problems.
After
your new cells engraft (begin to grow and create new blood cells for your
body), your blood cell counts will begin to improve and your immune system will
become stronger. This can be a time of transition in your recovery. You will
probably be leaving the hospital though you will still receive frequent
outpatient care at your transplant center.
You
will, however, still be weaker than normal for many months. The risk for
complications from the transplant is highest during the first 100 days after
your transplant. Your transplant team will continue to care for you and watch
you closely for infections and other problems. They will also give you
guidelines to follow to help prevent infections. If you have any symptoms,
you should contact your doctor right away.
After leaving the
hospital: Sometime during the first 100 days, after you have
engrafted and you’re able to take oral medications, you will probably be able
to leave the hospital and receive your care as an outpatient. You will play an
important role in your own health care. When you leave the hospital, you will
need to:
·
Closely follow guidelines to reduce the risk of life-threatening
infections and other complications.
·
Take all of your medications exactly as prescribed.
·
Eat healthfully. Follow your medical team’s instructions for
safe eating and food handling. This will help you reduce your infection risk
and regain your strength.
·
Call your doctor right away if you have any symptoms or signs of infection.
Each
patient will have a different experience transitioning to outpatient care. For
some patients the transition is smooth while many others may experience
symptoms, side effects, or complications that require re-entry into the
hospital. It is common for patients to re-enter the hospital to be treated for
symptoms and side effects after transplant. Of course, not all patients need to
re-enter the hospital.
In your
first weeks or months after you leave the hospital, you will go to the
outpatient clinic often, perhaps even daily, for care. If you travel to a
transplant center far from home, expect to stay near your transplant center for
treatment for at least the first 100 days and until any complications are
resolved.
Since
you’re going to be very tired post-transplant, your caregiver will
be looking after your daily needs.
Here
are some things you can do to rebuild your health and strength:
·
Get enough rest. You will be tired because your body will be
working hard to recover from the intense treatment you received during your
transplant.
·
Get some exercise every day, as you are able. Many people who
have had a transplant say it helped them to get up and walk each day, even if
they could only walk a short distance. Over time your strength will grow and
you will be able to do more.
·
Be patient with yourself and with the time it may take for your
body to heal.
After
your transplant, your immune system will be very weak. This is caused both by
the preparative regimen you
received before your transplant and by the drugs taken after your transplant,
such as those used to prevent a complication called graft-versus-host
disease (GVHD). GVHD is a common complication
of a transplant from an unrelated donor.
Things
to keep in mind about infections:
·
Most infections happen in the first 100 days after transplant,
but they remain a risk as long as your immune system is weak.
·
Infections can be very serious and even life-threatening in some
cases, so your transplant team will watch you closely for signs of
infections.
·
You will receive medications to reduce your risk of infections.
·
You and your caregiver’s awareness of the symptoms and signs of infection are the first and most important line of defense against
serious and life-threatening infections after you leave the hospital. If you
have any signs of an infection, for example a fever, tell your transplant team
right away. It is important to treat infections quickly.
After a
transplant, your immune system will not be at full strength, even after one to
two years. You may still need to take anti-infection drugs. Patients who get
GVHD may have weak immune systems for even longer because of the medicines used
to treat GVHD.
Acute graft-versus-host disease: Graft-versus-host disease
(GVHD) is a common complication after an allogeneic transplant, a transplant in
which cells from a family member, unrelated donor or cord blood unit are used.
In GVHD, the immune cells from the donated marrow or cord blood (the graft)
attack the body of the transplant patient (the host).
GVHD
that appears in the first 100 days after transplant is called acute GVHD. When
GVHD occurs later, it is called chronic GVHD.
Certainly
from everything I am hearing I will need to exercise extreme patience through
this process. I will do everything I can to keep myself active with the goal of avoiding being bored. The key will be to keep my spirits up. With all the support I have available to me, I am sure this is something I will be able to do.
“… As for that in the good soil, they are those
who, hearing the word, hold it fast in an honest and good heart, and bear fruit
with patience.” (Jesus speaking in the parable of the sower)
Luke
8:15
More to come…
