8/31/14
Day 61 of recovery
Things haven’t
slowed down yet & I’m still tired!!
Tues Alexa & I
had an apt with Dr. Sharp. Since he is
our Primary Care Physician I decided we’d better get into him so he would have
a record of everything she is on & what is going on. I was going to have him look at this cyst on
my back. A few yrs ago I went to this
other dr & I had 3 of them for him to remove. He only removed 2 & said he couldn’t get
the other one out & sewed me back up & it’s getting really big. Well that morn when I got up to work out I
had some kind of attack like the ones I’ve had before when I thought it was my
gallbladder. I couldn’t work out &
it lasted about 2 hrs. I called Dr.
Sharp’s office that morn & he wanted me to go in for a ct-scan. Luckily I hadn’t eaten since you had to be
fasting for the test. They scheduled it
for noon. Tyson wanted to go with us to
Dr. Sharp’s to get his warts frozen off so we all went in. After he finished with Tyson & he left
& rode his bike home & then we talked about all of Alexa’s stuff he
asked me if I had a cyst. I totally
forgot about the cyst on my back since I was thinking about my attack that morn
& told him, “I don’t think so.” We
talked a lot & then I left for my scan.
I got over there & was drinking my yucky drink they make you drink
& remembered that I didn’t have him look at my back. I went out in the hall & called over
there & the girl said, “Isn’t that what your apt was for, haha?” She told me I could come back at 2 & he
could look at it. When I went back over
there & Dr. Sharp walked in the 1st thing he said was, “I asked
you if you had a cyst!” Ty had a great
time teasing me about this saying that it was like going to the store for milk
& him calling to remind me about it & me still forgetting it! That’s what happens when I have 50 billion
things on my mind
Thurs was a rough
day. Alexa hasn’t been feeling well at
all. She still keeps saying she just
feels sick. She also is still running a
low grade fever anywhere from 99.5 – 100.6.
Sometimes it is normal though. I’m
pretty sure it must be some of the medicines she is on that is causing some of
this. She is weaning off her patch she
has been on & it has been really tough. I have read about some of the others on the
pancreas facebook site who have weaned off this patch & they say it is
really hard on them. She is on the
lowest dose now & only has a few more days so hopefully things will get
better soon. It’s such a long, slow
process!! It’s also a challenge keeping
her bowels regular. I know, too much
info, but that’s what we have to talk about in our house all the time now,
haha! It’s just normal conversation
now! One of the most common causes for
these kids having to go to the ER after this surgery is from a blockage & I
am determined that she is not going to get one!
I give her an herb called Cascara Segrada & it keeps her pretty
regular. Thurs morn Tyson & her had
to go to the dentist for cleanings. She
felt awful but had to go anyway. Right
after that we rushed home to get lunch & had to go clear to the Univ of
Utah hospital for her endo apt. We really
liked this dr. His name is Dr.
Jones. He came in & told us that he
spent part of the night up worrying about this apt. He thought that she had just had her pancreas
removed there in Utah by someone & he thought he was going to have a
full-blown case of brittle diabetes on his hands. He had educators on stand-by all set to come
in to educate us on how to take care of things.
He said, “You don’t know how relieved I was to get your records from
Minnesota & find out that you had the Auto Islet Transplant & you
should have seen the huge smile on my face when I saw your blood sugar numbers
they sent to me!! I was so relieved!!” He was so interested in the surgery &
wanted to hear everything about it.
Another thing has been going on this week that has been causing me so
much stress, I have been trying & trying to find a good GI dr to take Alexa
to & have spent hours on the computer researching. I finally found several who had really good
reviews & seemed to have some training on the pancreas, etc. They were at the U hospital. I called there to get an apt & had it all
set up for Marie, Dr. C’s nurse to call & give them all the info they
needed, when they called me back & said I couldn’t go to either of those
doctors since Alexa had already been seen there by Dr. Adler. For those who have received my letters
before, you will remember that Dr. Adler is the one we went to before we knew
what was wrong. He had Alexa actually
stand up & turn around & said, “Look at her, she looks so robust. There is absolutely nothing wrong with
her. She just needs to see a psych. I’ll do an EUS if you want but I don’t think
I will find anything.” I even went back
to him a second time & brought Ty with me just to make sure I wasn’t being
hasty since he was supposed to be a pancreas specialist & he actually had
her stand up & said the same thing again.
When we left there Ty & I both said he was a real jerk! Well, it turns out that the U has a policy
that once you’ve seen a GI there you can’t switch to another without special
permission & the person we needed permission from happened to be out of
town for 2 weeks & there was nothing they could do about it till they got
back. I was steaming after I got off the
phone with them!! Well Dr. Jones was
able to see the notes that Dr. Adler had written in his computer & it was
really quite funny when he said, “Alexa, you really look rather pale &
skinny to me & I see a note here from another doctor here at the U that
says “she looks robust.” We started
laughing & Alexa said, “That would be from Dr. Adler. He thought I looked
robust & then she told him about how he had her turn around & told her
that there was nothing wrong with her & she needed to see a psych.” Dr. Jones just shook his head & said, “Would
you mind if I sent these record over to him? It wouldn’t hurt him to learn
something!” Then he said, “To be honest
though, I would have had a hard time believing it was genetic pancreatitis too.
You know, you’re 1 in a million.” I told
him we knew that but Dr. Adler didn’t have to be so arrogant about it & so
quick to decide there was nothing wrong & it was all in her head!! Anyway, Dr. Jones is sure they can do the
exact testing that MN needs done so it looks like we won’t have to go back
there in Sept & can wait till Dec.
He said we will just have to plan on spending about 2 ½ hrs there in their
office the end of Sept.
Back to the GI, I
decided to see about going back to Dr. Alsolaimans over at Central Utah Clinic. He was ok, we just couldn’t understand him
very well. I called over there &
found out that he was going out of the country to Turkey the next day & we
would have to see his NP, which was ok I guess.
We liked her but once when we went she said we had to see him for our
problem. I found this other dr there at
Central Utah Clinic & called to ask them about switching to him & the
girl says, “Well if you switch to him you won’t be able to switch back to Dr. Alsolaiman!”
Evidently everyone in Utah has that same policy! I felt like saying, “Just who is paying the
bill?” It seems to me we should be able
to choose who we go to!! I posted
something about this on facebook & so many people from other states were
saying they had never heard of such a thing so is this just a Utah thing? I am really angry about this & seriously
ready to move!! Not to mention we have
to pay over $350 to put our kids in high school!! I about flipped out when we 1st
moved up here & found that out!! They
told me it was cuz our property taxes were lower than other places but ours are
higher here than they were in AZ & we didn’t pay anything to put the kids
in school unless they were in extra things like sports or something. I guess we are sticking with Alsolaiman &
Marie says she wants them to call her while we are in the office. We will see how it goes this week.
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