I was admitted into the hospital on Monday the 10th. I am starting to notice a change in how I
feel, but it is going slow and I am still a little out of it. I would have updated sooner, but I have been
so tired and didn't have the motivation to do much at all. To be honest I am still having a little bit
of trouble with getting myself to do anything.
I am tired, I am winded very easily and the motivation is just not
there. It is weird though because I am
getting antsy and I want to do something, I just can't think of anything I feel
like doing. Interesting dilemma
right? Before I came in I was thinking
about getting everything together for the scrapbook I am working on and
bringing it with me. I am slightly happy
that I didn't bring it with me because it would just be sitting on the table
untouched and then I would have been mad at myself. It has just been one of those weeks and I am
happy it is almost over....
Monday was crazy busy for me. I went to a radio interview to advertise my
benefit, then went to a primary doctor appointment and then came in here. I didn't want to cancel the appointment
because it was just a quick follow up. I
am sure some of you know how hard it is to make an appointment with a primary
for the annual follow-up. I made the appointment
over a month prior. I didn't feel like
doing that again and just wanted to get it over with. So I got here a little later in the
afternoon, but no big deal. They knew I
was coming and had everything ready for me when I arrived. This time I am on Cephtazadime and Colistin. They are both three times a day. I was happy not to have Tobi this time
because that drug requires a blood draw.
This one just requires me to pee in a cup to make sure my kidneys remain
OK. There is a small test strip that is
placed in the urine to make sure there are no traces of a certain protein. If that protein shows up, that could mean my
kidneys are being damaged. The joys of
antibiotics, but I obviously can't go without them right now.....
Tuesday I had to get another arterial blood gas (ABG) for
the transplant team. As you all know I
really don't like those. This time I
decided to asked for some anxiety medicine to help me through it. I am normally able to tolerate most things,
PICC lines, tests, whatever else these doctors like to throw at me, but I
figured if there was something to make it a little easier I wanted to give it a
try. So she gave me .5 mg of Zanax. It really seemed to help me. When the doctor asked me, "How do you feel?"
right before she started to do anything, I replied, "I don't
know." She liked that answer and
proceeded. lol When she stuck me the first time and was
moving the needle around to try and find the artery I did get a little
queasy. I asked for some apple juice,
she pulled the needle out, I was fine and then she proceeded again this time
she got it really quickly. I barely felt
anything because she had Lidocaine placed on it thirty minutes beforehand. The blood was sent to the lab and according
to the amount of CO2 not much has changed in the last six months. I sure don't feel like that is true, but my
doctor told me that when looking at other levels in the sample it seems like I
was hyperventilating. I guess that can
cause a decrease amount of CO2. It made
sense to both of us because I was breathing heavy while I was laying
there. The O2 was taken off to get the
blood at room air and I was trying so hard not to cough while she was getting
the sample. For now it is what it is and
we might try again in a couple of months.
The reason this test is so important is because it is put into the
computer and used for my allocation score for placement on the list. The higher the CO2 level is the higher on the
list I am.
Wednesday I did another test for the same reason, the six
minute walk test. That has gone down a
lot since the last time I did it. Any
walking at all seems to wind me O2 on or not.
The rest of the week has been pretty boring.
Thursday I did some painting again. That is a butterfly piggy bank. I asked if they had any piggy banks left and luckily they had a few. I am enjoying painting these.
This admission seems to be flying. It doesn't feel like I have been in here a week, time or health wise. I feel very
tired most of the day and my coughing is unbearable. This has been going on for a few weeks,
but I was hoping it would be gone by now.
Coughing I can normally handle. I
have done it my entire life and I am use to it, but lately this coughing is
just brutal. I will be sitting doing
whatever and a cough will come on. This
cough then turns into something like choking.
It is a hard cough, cough, cough, cough, my face turns red, I close my
eyes because I start to see dots, my head gets heavy, I feel like I am about to
pass out (and as embarrassing as this is to admit) sometimes I get close to peeing my
pants. I am coughing so hard I can barely hold it in. When I came in on Monday I was coughing so
hard I "passed out" on my nurse when she was accessing my port. Now I put passed out in quotations because I
only blacked out for a split second.
Coughing like that is really upsetting and scaring me. Two times now it has brought me to tears. Thinking about it both times that seemed to help. I think putting on the water works helps
break things up because I would cough a couple more times, blow my nose and
feel much better. haha Now I ironically
laugh at that because this is how it goes.
I am brought to tears due to it being so completely
uncomfortable, the pain in the muscles, and the complete frustration...
Let out
a cry
Yell at myself for being a baby
Stop crying
Then feel so much
better.
Now I don't know if I actually
do feel better from the crying or if I am just relatively feeling then before. I don't know how to describe this feeling. The best I can say is it feels like slowly dying. I start coughing so hard I lose all of my breath, my
muscles start aching, and then all my energy and feeling in my body slowly leave me. That is how I feel right before I black out. People ask me questions like "How
does it feel to breath with CF?" or "What does it feel like to cough like
that?".
I guess I am just trying to give people more of an idea. One thing I can say for sure though is I
can't wait until I don't have to deal with that feeling anymore! As for now I am hoping that in the next
couple of days those coughs will be less frequent, I will get some of my energy
back and feel better for a little while.
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