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September 3, 2002 (Mark)
This week has been a good one, I continue to feel well, and
am getting stronger every day. Last weekend we bought a new car,
something with a cheaper payment, lower insurance, and a lot better gas
mileage than the SUV we had been driving. I continue on my weight
lifting programs in physical therapy, and will do so for at least the
next month. I passed my swallow study, so now I can drink anything
I want, however, I'm still drinking mostly water. I returned to
work today, and that feel's really good. I also had the MRI done
on my head this morning, but won't know the results for a few days.
Kylie is loving kindergarten, and Kenzie is getting in to more of a routine.
Stacey still isn't sure if she wants to go back to work, or go back to
school. We're all just taking it one day at a time. The hospital
just called and said that the doc wants to see me tomorrow, so maybe the
results of the MRI are in. The nurse didn't know what it was about,
and the Dr. is already gone for the day. I'll let you know more
tomorrow.
September 4, 2002 (Mark)
Well, today was the typical good/bad day. I started off
by going and visiting some job sites with my boss Rick, Jerry (the Central
Regional Manager) and some plumbers from Kansas City. It was really
good to be out and feel like one of the guys again. Then the bad,
when I got back to my truck, I had a parking ticket. It costs .60
cents to park for an hour, but if your 20 minutes late, it'll cost you
$31.00. Then I was supposed to go in and see Dr. Schriber this afternoon,
but I was running late, so I called to let them know that I would be late,
and the nurse told me that I was scheduled for a spinal tap. This
was news to me, so I called to talk to Gail, my nurse practitioner.
She had more good and bad news. The good news is that the MRI showed
that the original spots on my brain are considerably smaller, however,
there are several new smaller spots. I then talked to Dr. Schriber,
and he won't speculate what is causing these until after the spinal tap.
They can't get me in for the spinal tap until Friday the 6th at 2:00p.m.
Then it will take up to a week to get the results from that. Doc
also mentioned that we may do a biopsy at some point. He did tell
me that these results were very surprising to him, and that I had absolutely
no symptoms (seizures, confusion, slurred speech) and that as much as
I was improving every week, these results were a complete shock to him.
As long as I continue to feel good, this won't change my plans any.
I will continue to work and live life as normal as possible until I know
different. This is just another bump in the road of life, that I
will get over just fine. God won't give me anything I can't handle,
right? Your prayers are always appreciated! Mark in Phoenix
September 6, 2002 (Mark)
Today, I went and saw Dr. Levine, the neurologist. He
read my MRI films, and said that they are still a mystery to him.
He has no idea what the spots are or what has caused them. He told
me that his best guess is that as well as I'm progressing, that they are
probably nothing. His thoughts on the new spots, were that they
probably showed up shortly after the last MRI in July, and like the rest,
they've gotten a lot better. I like this theory, I figure the original
spots sent out invitations, because my head is such a fun place to hang
out! We did go ahead with the spinal tap just to be sure.
It took three different tries, but we finally found some fluid.
Dr. Levine told me that there was some blood in the fluid, which indicates
my head still has a bleed in it. I asked how we would treat this,
and he said time will heal it. I asked if I should be taking any
precautions or if I was at risk to pass out and have another stroke, and
he told me no, to keep doing what I have been. Preliminary results
of the spinal tap will be in by Tuesday afternoon, with some more specific
tests not returning for a week. But he told me that if the prelims
come back normal, so will the others. If everything comes back normal,
there are to other MRI like tests he would like to do. But he did
say I didn't have to worry about a biopsy, the spots are so small, that
a surgeon would have a very hard time getting in there. That was
good news, I really don't want to have anyone drilling into my head.
I will fill you in on the results when I get them. Mark in Phoenix
September 12, 2002 (Mark)I'
I've had a headache since Saturday afternoon, that isn't getting any better.
It's just like the last spinal tap headache real bad when I'm up and around,
but gets better when I lay down. Last night the pain got up to a
nine, so I took some oxycodone. I'm not sure if this stuff helps
with the pain, or just makes me so loopy that I forget about the pain.
At any rate, I don't like taking the narcotics unless I really have to.
I went in to the clinic yesterday, but didn't get examined by a dr.
So, they called yesterday afternoon and had me come back this morning.
Dr. A was the examining physician. He's ordering a blood patch for
the spinal tap headache, this took care of it last time. We're
doing that at 2:00. And he was worried about a cough
I've developed, so he sent me down for an x-ray. He didn't make
us stick around to wait for results, telling us he would call us instead.
When we got home, we saw that the neurologists office had called, so I
called him to see about the, preliminary results of the spinal tap.
ALL INITIAL TESTS CAME BACK NORMAL, SO HE IS EXPECTING THE MORE INTENSIVE
TESTS TO BE NORMAL AS WELL. I called Dr. A to check on my chest
x-rays and they came back normal as well, I guess I have allergies or
a chest cold, but no pneumonia. It's good to be healthy, but I'll
never get used to waiting for test results. I don't go back to clinic
until 9-18-02, but I'll do an update before then, so everyone will know
we're alive.
September 13, 2002 (Stacey)
Hello everyone...its been a long time since I've typed an
update so I hope this finds everyone doing well. Last night Mark
started to get severe pain in his lower back as well as a fever so we
called the clinic. Dr. A called us back around 11:00 and said to
come to the clinic in the morning. Mark's fever went up even more
and the back pain persisted throughout the
night. The pain medicine couldn't stop the pain so needless to say
Mark or I didn't get much sleep last night. We went up to the clinic
and Mark's blood pressure was really low and his heart rate was really
high. They took another chest x-ray this morning and gave him some
IV fluids. His blood pressure is still low but the x-ray did show
that Mark has pneumonia. The doctor said Mark's x-ray blossomed
since yesterday. The doc also said that would explain his back pain
since the pneumonia is in the same spot. He has been re-admitted
into the hospital. Yesterday when they did his first chest x-ray
they saw some barium in his lungs from when he did the barium swallow.
The doctor said it was a small amount and would go away on its own.
They are going to try and do his blood patch today at the hospital as
well for the spinal tap headache.
Please continue to pray for us as we have all witnessed throughout this
whole ordeal that prayer really does work!
September 14, 2002 (Stacey)
The girls and I just got back from visiting Daddy. Today
is unfortunately probably the worst day Mark has felt since the onset
of his pneumonia. We didn't stay long because he was very sleepy...he
didn't get much sleep last night due to coughing per nursing. Yesterday
they did that procedure where they stick a tube down your nose to get
into your lungs to take a sample of the fluid to test what is growing
in there (Mark had that done back in May when he got pneumonia right after
he was discharged for the first time). Mark doesn't remember it...he
said they must have given him some good drugs. Nursing told me you
are pretty doped up for that procedure and won't remember it. He
didn't get a blood patch yesterday, but they are to consult him today.
His spinal tap headache isn't bothering him much now since he is pretty
much laying down. It only bothers him when he gets up and about
which so far I don't think is much. He said his chest really hurts
today, and he is really weak. He
did run a fever last night but hasn't today so far. Mark has been
on steroids for quite some time now and that will mask
fevers so when you run a fever you REALLY run a fever. His
blood pressure is up now...they think he was dehydrated. Right now
they are treating Mark for just about everything to cover all basis till
they know different.
September 16, 2002 (Stacey)
The doctor told Mark yesterday that his chest x-ray from yesterday
looked better so whatever they are doing must be working.
The doctor said what Mark has is basic pneumonia. The
nurses told me yesterday that nothing has grown in the cultures yet which
is good. He has been on oxygen
since Friday because his oxygen saturation is too low, but he hasn't ran
a fever since Friday night and his blood pressure has remained good.
The blood patch hasn't been done yet because Mark said something is too
low for them to do the procedure. I'll write more when I know more.
8:50 p.m.
I guess I forgot to mention something that happened yesterday.
The girls and I were on our way to church yesterday when Mark called and
said the hospital had a bomb threat, and they weren't allowing anybody
in. Well nothing happened and they lifted the ban to allow people
in and out again. So the girls and I went up after church to see
him (hum...not sure that was such a good idea now that I think about it).
Later that evening my Aunt Ann came over to watch the girls so I could
spend some time with Mark. Again the hospital had a bomb threat,
and I was told I was going to have to leave.
I did get to stay awhile longer but then went home. Praise
God that nothing ever transpired from these threats.
The girls and I went up to see Mark this afternoon. He
is coughing pretty bad but is starting to feel better. That's about
all I know for now.
September 17, 2002 (Stacey)
I don't have much to report. The type of pneumonia Mark
has is strep pneumonia. He continues to receive oxygen since his
saturation levels are still too low due to the pneumonia and is coughing
like crazy. He is feeling good other than his spinal tap headache.
It got pretty bad today he said because he was up and around for chest
x-rays. They still haven't done the blood patch which took care
of his headache last time since Mark has an infection. A blood patch
is basically using Mark's blood and injecting it into his spinal fluid
to seal off where the spinal tap was performed. Your spinal area
is a sterile environment so they don't want to inject infected blood to
that area. He may come home
in the next day or two.
September 18, 2002 (Stacey)
Mark continues to feel pretty good other than his bad cough
and spinal tap headache. The girls and I have been going up everyday
after Kylie gets out of school in the afternoon. I got to see the
doctor today as he was visiting Mark (this is the first time I have been
able to talk to a doctor since Mark was admitted on Friday). He
wants to keep Mark until he doesn't need oxygen anymore...one of his lungs
is deflated due to the pneumonia. So we really don't know how much
longer he will be in the hospital and the doctor wouldn't say either.
Mark is getting a little bummed out staying at the hospital. Tonight
we had a special dinner...we ordered Papa John's pizza delivered to Mark's
room. I think that cheered Mark up, and Kylie was so funny.
She said "that was the fun nest evening we ever had".
I thought it was so sweet of her to say that, and I know it made Mark
feel good.
September 24, 2002 (Stacey)
I know Mark has been meaning to type an update the last couple
of days, but he is VERY wore out so I thought
I would do one. Since he was discharged from the hospital on Saturday,
he basically has been sleeping all the time, except for the K-State/USC
game (being a K-State alumni of course
I have to mention the fact that K-State won...Go Cats!). Mark did
experience some severe pain again in his back last night where the pneumonia
was so I called the clinic. They told us to take his temperature
every four hours, and he could take some pain medicine every four hours
also as needed. The doctor wanted us to call them this morning to
let them know what his temperature was and how bad the pain was.
Mark only took some pain medicine one time and never ran a fever.
The last couple of days Mark has felt like a truck ran over him but today
he said that aspect was better but he is still very tired.
The good news is that Mark is actually staying in bed and resting.
He is very weak again, unfortunately every time he is in the hospital
it just zaps his strength. His weight is still around 165 pounds
so he still has a ways to go. Mark continues to take some medicine
(Megese) to stimulate his appetite but between the pneumonia and decreasing
his steroids (steroids also stimulate appetite) he is eating considerably
less. We go back to the clinic on Thursday for a chest x-ray and
lab work. Thanks again for all the prayers.
September 27, 2002 (Stacey)
Mark went to the clinic yesterday and did the chest x-ray and
lab work. His x-ray was clear and his lab work was fine so
that is good news. His blood pressure was low again so he was given
some fluids IV but it is still low. He now is on a medicine to help
bring his blood pressure up. We also found out that they are wanting to
send us to the City of Hope in LA to see the neurologist over there.
I guess the neurologist has some theory on the spots in Mark's brain and
wants to see him personally. They took a lot of blood yesterday
for some testing (I don't know what for...I was gone getting Kylie from
school when all this took place and Mark said they didn't tell him anything
regarding what the theory is or what they are testing for). They
are wanting to send us to LA next week, and we are waiting to see if insurance
will cover for transportation and lodging. Mark is still weak and
worn out. He continues to rest a lot but today he has to leave for
awhile because they are coming to spray our apartment for pest control
per my request. I had my first run in with a scorpion the other
night. This was a big fear of mine when we moved here but had been
blessed to never have seen one. Tuesday night I was up late and
started getting ready for bed and then woke Mark up to take his medicine.
We were laying in bed, and I realized I hadn't gotten my coffee pot ready
to make my coffee in the morning. So I got up and by this time it
was 11:30...flipped on the kitchen light and there he was in front of
the dishwasher. Now I'm the type of person who is afraid of spiders
but I knew I had to kill it. So I ran into the bedroom
to get a shoe and in passing told Mark we have a scorpion in our kitchen.
When I got back to the kitchen the big guy (he was pretty big for a scorpion)
hadn't even moved so I stood over him with shoe in hand getting the courage
to kill this thing. He just sat there curling up his tail ready
to sting but I did it after a couple of blows. Mark was sweet...he
said I was his hero. The next morning I found a small dead one in
one of our kitchen cupboards. They say the small ones are actually
worse because the venom is more concentrated. Anyways not to bore
you with this creepy crawly stuff but wanted to share how the Lord still
protected me from the scorpions because I am never up at 11:30 at night
and normally if I realize
my coffee pot isn't ready for the next day, I just do it in the morning.
God is good!
September 30, 2002 (Stacey)
Mark went to the clinic today for a blood pressure check.
Unfortunately it was very low so again he received some fluids IV.
This didn't help bring it up either so once again they prescribed another
medicine to try and help bring his blood pressure up (now he is on two
different medicines for his blood pressure). They don't think it
is fluid related and aren't sure what is causing it to be so low.
They took a lot of blood again and are running several tests and according
to the nurse "they are checking everything except the kitchen sink".
They are very concerned and anxious for Mark to go to LA hoping the neurologist
over there will have some answers (supposedly he is one of the best in
the world). All the tests came back from last week regarding this
theory the neurologist had but all tests came back fine. I still
am not sure what his theory was...I think something to do with his nervous
system. We go to LA on Friday and have an appointment at the City
of Hope at 1:00. The girls are staying here and my cousin Erin is
coming over to watch the girls and spend the night. We come back
on Saturday...Kylie keeps asking me "how many days till you and Daddy
leave and Erin comes over to stay" so I'll tell her and she just
grins and says "goody"...don't I feel loved:)
Mark is extremely weak, VERY shaky and worn out. Now
with his blood pressure being so low too they want Mark to use extreme
caution...today leaving the hospital Mark had to be wheeled out in a wheelchair
(Kylie actually pushed him the whole way from the 12th floor to our car...I
was quite impressed). We are to use a wheelchair at the airport
and hospital too, but around the apartment
they want Mark to use his walker, and I'm to assist him with bathing and
dressing. Mark has still been sleeping a lot, not eating as much
and staying in bed most of the day which in the beginning we thought he
was recovering from the pneumonia but now we are thinking he is depressed.
He has lost a little bit of weight too...now he weighs 161 (if you remember
when he started the transplant he weighed 209). I know he just wants
to feel "normal" again. We go back to the clinic on Wednesday
to check his blood pressure and make sure they feel it is safe for Mark
to travel. Prayers regarding Mark's depression and wisdom for the
doctors over in LA would greatly be appreciated.
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