SURGERY AND POST OP
Posted July 8th, 2013 by Mark Ghiassi
ONE WEEK POST OPERATION
It is now one week and two days post
operation. I promised everyone I would write about surgery and what happened
during those first few days. My head hurt so bad I could not look at the
computer or my phone. I have slept almost the entire day. It is even
difficult to remember all the details of last week.
DAY OF SURGERY
The morning of surgery we arrived at
St. John’s very early. I was pretty nervous, all the nervousness from the
first surgery came back to me that morning. And all the disappointment as
well. I don’t think Mark or I slept at all that night.
This time, we met the
anesthesiologist, he was very nice. He explained to me that at the end of the
operation I would wake up on the operating table, on purpose, and not to worry,
that meant the surgery was complete. Totally different from my first surgery,
when I woke up with the breathing tube in my mouth, gauze in my throat, and
blood all over my nose, and dizzy from anesthesia.
So the next thing I know, I say
goodbye to my family and they wheeled me into surgery. This is where I can’t
remember if I was placed on operating table and given anesthesia. This means
they did a good job. Probably better not to remember.
First thing I remember, WAKING UP on
operating table just like I was supposed too. The doctor spoke to me and told
me surgery was complete. Now this is personal, but I will share it. I told the
doctor I had to go to the bathroom right then. I heard someone laugh. It was a
good sign I was okay.
WAKING UP IN ICU –COULD NOT MOVE MY
ARMS AND LEGS
I was awake and I could talk but I
could not lift my arms and legs. I remember my mom being there and telling her,
I can’t lift my arms and legs. I felt my tongue go numb. It scared me. A friend
who is recovering told me this might happen so I tried to remain calm.
I don’t know how much time passed
when I woke up and could lift my arms and legs. It was a relief though. I am told
the surgery took about 3 and a half hours. Probably harder on my family waiting
to hear than me sound asleep being operated on.
I have no idea who came in to see me
first but I remember being told surgery went well. Many of my friends and
family members came in two at a time into ICU and saw me. I was very much
awake. The doctor told me it was the adrenaline from all the cortisol in
my body. I felt really good while everyone was visiting, then after
awhile I just became completely exhausted, mentally and physically.
WAITING FOR CORTISOL TEST RESULTS
That night, Mark and I were of course
happy that I was alive and made it through such a surgery a second time.
However, the worry that surgery was not a success as far as Cushing’s Disease
itself was the bigger fear. We had to wait until the next morning
sometime to hear the results and pray the cortisol was low. The thing
about Cushing’s Disease for success, you need a successful surgery, low
cortisol results the day after, and months of testing after surgery to have a
more conclusive answer. It is very difficult being patient and waiting for all
the results. An instant “cure” is not the answer for this disease.
So that first night, Mark and I
talked about all the signs we had learned to look for that surgery was a
success. It is crazy to think we were hoping my cortisol would drop so low that
I would be physically sick, nausea, fatigue, etc. There is something called
diabetes insipidus, where you urinate too much. Patients can get this as well
when there is success. Who would have thought we would be waiting for me
to have problems, right?
WHEN THE CORTISOL DROPPED
A friend described her experience to
me, and that is how I believe I felt this happen. I felt nausea, lightheaded,
fatigue, weakness in upper body and lower body. I thought this lasted all day.
Mark said it was about 3 hours. FELT LIKE FOREVER.
I remember asking for pain and nausea
medication. I remember a general feeling like I was dying, like my life was
draining out of me, all of my energy and then waking up and feeling ok. This
was Thursday morning.
HEARING THE NEWS THAT CORTISOL WAS
LESS THAN ZERO
That Thursday morning, the doctor’s
assistant came in and told us my cortisol had dropped to 1, the ideal was
3. We were very happy. We told my mom and I called my sister and told her
as well.
That day I wasn’t allowed any
visitors in ICU because the day before it had wore me out. The nurse told me I
had to remember I was in ICU for a reason.
The only thing I could think of was,
I better get out of ICU or it will cost me another $5000.00 to stay here. Hope
this makes everyone laugh. I was fine not having visitors because
my goal was to be moved into a PCU room, a step down from ICU because I wanted
to see my nieces.
I was moved on Thursday night to PCU
by about 6:00p.m., and if you all know my family this was not without a good
dramatic story to make sure I was put in the room. It worked out well, I got to
see Kylee and Kaitlyn. They took turns sitting on the edge of my bed talking to
me.
This is why we had the surgery. So
much of my life had been taken away by this disease and the first failed
surgery.
DISCHARGED ON FRIDAY
It was amazing to me to think on
Thursday that I would be discharged the next day. And I was. I was
wheeled out and put in my car. By Friday morning, most of my symptoms had
subsided.
I was placed on cortisol before
leaving the hospital. It is ironic that you have to be on cortisol after
surgery when you had too much before surgery. Lol.
Mark brought me home and had me rest.
TAPERING DOWN THE DOSE OF CORTISOL
So this last week and weekend I had
to lower the dose of cortisol. This experience from what I am told if
analogous to a person who has been on drugs and is having drug withdrawals. So
every time I lower my dosage I can expect to have a lot of these symptoms.
Headaches, cold sweats, fever, nausea(but not vomiting, if so, then we have to
go to ER), muscle weakness, etc. You get the picture.
HEARING THE NEWS THAT SURGERY WAS A
SUCCESS
Before I end, the surgeons in the
hospital told me what a success the surgery was. I told one of the surgeons I
just can’t believe it. And he said, it’s ok you can believe it. Even in
my post op appointment my doctor told me to believe it.
I am still having a difficult time
believing that I am on the road to recovery. Mentally, from what happened with
the first surgery, it scares me to place any faith in my doctors now. This
surgery was way better than the first with this team. My brain knows this,
but in my heart I am still scared of failure. I am afraid to be happy
that they are saying it is successful. We met with my endocrinologist and it
will take months of testing to determine if pituitary is working.
TREATMENT PLAN
Everyone keeps asking what is the
treatment plan. Well as you all know by now, each case is different. The
treatment is to have an endocrinologist along with my surgeons perform regular
testing for 6 month to 18 months. They must determine if the pituitary is
working now that it has “been on vacation” because of the tumor.
One of the reasons why everyone
contributions have been so helpful is also because of the aftercare of this
disease. Not only have you all helped me to finally have this surgery,
the cost of some of the follow ups were included in the out of pocket we have
paid already.
No expenses that we incur are paid
for by insurance if we use the specialists. I am trying to coordinate my
after care with my local endocrinologist to make sure we follow the treatment
plan and protocol that the other recovering patients have followed with the
specialist.
If my local doctor conflicts with the
specialist we will take the advice of the specialist in Cushing’s Disease no
matter what. We have not come this far in this fight against the disease and
health insurance even if it does cost more out of pocket. You can not put
a price tag on your health.
And with all of your support we have
made it this far. I look forward to updating you as we go along this month.
Today, Mark took me in a wheelchair
around the neighborhood, and I got up and walked every now and then. I am
allowed to walk right now, but my muscles give out on me after a certain amount
of time. I will just do a little bit each day and will just progress. For next
3 weeks, no driving, no exercise. We see doctor again tomorrow for a post
operation visit.
That sums up the whole process for
you. Thank you for your emotional support during this time. Some of you I don’t
even know and some I have not seen in years. I want to share this journey with
people who do not know about Cushing’s disease to help others understand how
there are rare diseases out there that people need to know about.
Research and financial support for these rare diseases are really important for
people.
