“Adding wings to caterpillars does not create butterflies, it creates awkward and dysfunctional caterpillars. Butterflies are created through transformation.” ~ Stephanie Marshall
It’s been a little while since I have last posted on here. I apologize….but…I’ve been living life a little more each day! :) It is very nice to be able to wake up in the morning and be able to do things without getting out of breath and not having to lug around the oxygen tanks. I felt so tied to the house with my “lifeline” of the oxygen concentrator. It feels weird not having the nasal cannula in, but I am getting used to not having it! ;) I hope to never have it again!! I still have my bad days but they are less frequent then before! The meds are still doing a number on my stomach and I am constantly taking Zofran to help try and combat the icky feeling. Sometimes it helps and sometimes it does not. My eye is also still not right and it still throws me off quite a bit, but I am trying to get used to it. I’m still hopeful it will eventually come back. Only time will tell.
Doug and I went back to Cleveland Wayne Wayne
My second stomach test that day wasn’t as easy as the first.
The esophageal manometry test is seriously no fun. I’ve had it done twice
before and was somewhat prepared. I even had the same tech as last time. This
test involves numbing one side of your nose and inserting a large tube thing
down it and down your throat. The tube is pushed all the way down your throat
until it gets to your stomach. (all the while you swallow water to help it get
there.) This time around I gagged quite a few times and thought that I was
going to see those scrambled eggs again. Luckily, I did not…and we were able to
finish the test rather quickly. I also had to have a PH probe in for the rest of
the day with removal at 8 am the next day. Though the tech said that Doug or I
could remove if we needed to. The probe was just like the test I had just done.
The tube (though skinnier thank goodness) went down my nose, and down my
throat. Once in place, the tube was taped to my cheek and also to my neck. I
had a gadget to push a button when I ate; when I took meds; when I slept; and
when I had heartburn or acid reflux. This thing was no fun!!! I know that I shouldn’t
complain because it could be a lot worse….but it did really stink! Doug and I
were going to go out to dinner with friends, but eating and talking were both
an issue for me. It was making my throat hurt even when I was just sitting
there. I had tried to take some of my many meds (I had to skip all but my
anti-rejection meds for the tests) but I had 2 get stuck, so I called it quits
on the meds. (again, except for my important anti-rejection ones!) I was quite
miserable. I was very tired and I did find a somewhat comfortable position
lying on my right side…the tube didn’t seem to irritate my throat that way. The
only issue with lying on my right side was my incision…this is the side that
has bothered me more then the other. Come 6:00 AM, we were up (didn’t sleep
well) and Doug finally pulled the tube out for me. Ahhhh!!!
I was actually looking forward to my Wednesday appointments
and bronch. (crazy, I know!) I wasn’t scheduled until 7:25 to start the day,
but I wanted to get there early and start with appointments with the hope that
I could get my bronch in early and we could head home. We did arrive at the
Crile building about 7 AM and I had 17 vials of blood taken from my arm! It’s
been awhile since this much had been taken from my arm at one time. Next up was
the pulmonary function lab to check on my lung capacity. I was ecstatic and
actually did a “happy dance” when walking out from the exam room to Doug in the
waiting room. I told him that my numbers went up greatly! When I was there
August 14 (a little over 3 weeks ago) my FEV1 (Forced Expiratory Volume….amount
of air I can forcibly exhale in 1 second) was 81%. Before transplant (July 2) it
was 16%! Quite a difference!! But on Wednesday…September 5, my FEV1 was 93%!!!
My FVC was 80% and that was up 10% from August 14! Doug was very pleased and
told me that I’m probably doing better then most people that don’t have any
lung problems. :) After that test, I went for the usual chest x-ray and then we
dropped off the recorder box from the lovely PH test the day before.
Next up we met with one of the post-transplant pulmonary
doctors. Doug and I really liked him. He had a great sense of humor. He is more
my type of doctor. Sure, the other doctors there are fantastic…but there was
something about this one that I enjoyed more and I think most of it is because
he can joke around and also be serious….and I know how to take both. Anyway, we
spent close to an hour with him I believe. I think we learned more from him
then we have some of the others. First of all, he was VERY impressed with all
of my numbers and with how well I am doing. He saw my 93% for my PFT’s and all
he kept saying was “Wow!” He believes I can still get higher, but told me I am
pretty high so don’t get disappointed if next time there isn’t a huge jump.
Here I thought I had done slightly “bad” because my throat was hurting from the
previous days events. My incision was also hurting some so I felt like I couldn’t
inhale as well as I had been. I guess not since I had a 12% increase! He
reviewed my chest x-rays and remarked how great they looked in comparison to
what they used to look like. He also showed us where the wire holding my
sternum together was. (Doug and I didn’t know that the wire was in there!) He
told me that I will set off the metal detectors so to be aware and also
cautious of being “strip searched”. Haha! I asked him a few questions as to what I could do or couldn't do yet. He okayed me to drive, yet I don't feel too comfortable doing so because of my eye. Doug let me drive home from Greenville yesterday and I also drove up town to get my hair done yesterday, and I picked the kids up from school today. I did fine, but I still don't feel 100% confident in driving with my eye like this. I also asked the doctor if it was ok if I got a massage yet or not since I have a gift certificate for one that expires in December! He said ok, but maybe wait a tad longer just for me to be comfortable. One other thing I asked him about was if I could get my hair colored or highlighted. (Getting tired of those grays!) ;) He just looked at me, turned to his computer, and typed in his notes, "Do whatever you would like with your hair". Doug and I got a good laugh out of that.
I also asked him if the biopsy results from my old lungs
were back yet and he said they were. He went on to read from the report and
commented that it was confirmed I had Bronchiolitis Obliterans and that it was
caused by my Rheumatoid Arthritis. That was a relief finding out that it was BO
for sure that caused all of this. It still really blows my mind that I went
from being healthy to being so sick and needing a lung transplant in such a
short amount of time. Another thing that he talked to us about was that I have
a positive peak flow antibody. (I think I have that correct.) This has to deal
with my donor and the antibodies that have developed with my lungs. He said
this is a part of rejection if not treated and they have debated on whether to
treat it or not. Since I am doing so well…my PFT’s are increasing, my bronch’s
have come back fine…then they do not want to treat it right now. He explained
that as long as I am doing well I could “pull out of” this antibody thing. So
that is what we are hoping for. Every day I keep track of my temperature
(anything above 100 warrants a call in, and could be a sign of rejection), my
weight, my blood pressure and pulse in the AM and PM, my blood sugars four times
a day, and microspirometer readings in the AM and PM (a drop in these could
also mean rejection). As long as I am vigilant about keeping track of all of
this, I am sure everything will be okay.
The last thing left to do on Wednesday was the bronch. For this
procedure, you are given twilight sedation and a scope is put down your nose
and throat. The scope takes pictures of your airways and a small part of your
lung is taken for biopsy. The part taken for biopsy is the surefire way to tell
the doctors if you are in rejection or not. I didn’t have any bronchs
pre-transplant. I was told this was too dangerous for me. This was the only way
to determine if I had Bronchiolitis, but they couldn’t perform it so I never
knew for sure that is what I had. (until they biopsied my old lungs and
confirmed the diagnosis) The first bronch I had was right after transplant. I
was still under sedation so I do not remember any of it. The second bronch I
had was August 13 and I was nervous because I didn’t know what to expect. Before
going back for the procedure, I had to do a nebulizer with Lidocaine so that my
throat would be numb. This isn’t much fun, but it wasn’t horrible. Once I was
back there, the atmosphere was actually lively and I felt relaxed. I was given
the “good juice” and my eyelids got heavy and before I knew it I was out for
the count. I do not really remember much of anything until the next day. I
recall asking Doug as we left for a cup of cheddar broccoli soup, and I also
recall eating it as soon as I got into the car. I do not remember anything much
other then that though. :) I felt great the next day because I had gotten so
much sleep!
So this time around I figured it wouldn’t be much different.
I even commented to one of the nurses…”Is it wrong that I am actually kind of
excited for the bronch?” She didn’t really respond, which I should’ve taken as
a sign that things probably weren’t going to go as planned. I think I have a
start to a cold, so doing the numbing nebulizer wasn’t great this time around.
My throat was numb making it difficult to swallow and I was coughing from gunk
in my throat. I would try and swallow but would end up choking on my spit. I
get wheeled back to the procedure room and it was a different doctor this time.
One of the nurses helping with the procedure told me they would give me the
juice, put some gel in my nose that I would have to suck up, put a towel over
my eyes to protect them from the procedure, and then they would get started. As
she said this, I just felt like this procedure was going to be a lot different
from the last one. Boy was I right! (I usually like to be right, but in this
case, not so much!) I got the “good juice”, but my eyelids never got heavy. The
towel went over my eyes and I could feel myself starting to panic more because
I don’t recall any of this from before. Then the gel in my nose…sucked it up…then
they started inserting the scope in my nose. At one point during my many gag
sessions, the other nurse in there said aloud that I was wide awake and asked
the doctor for the ok to give me more good juice. He gave the ok (I think) and
I got more, but I was still wide awake. I heard the doctor keep saying that I
was doing great and we were almost done. Easy for him to say. Well, I did
survive…and the doctor and the fellow assisting left the room leaving me with
the 2 nurses. I asked one of them for a suction to get the extra spit
accumulating in my mouth that I couldn’t swallow. I didn’t say much other then
that and was wheeled back to my area for “recovery”. (I use that term lightly!)
As I’m being wheeled back, I see Doug with the nurse that was there earlier. I
looked at Doug in the eye and told him, “That sucked! I was wide awake for the
entire thing!” As I was blurting this out, I noticed the fellow that was
assisting the doctor talking to another patient right across from my area. As
soon as the words left my mouth his head jerked around to look at me. I didn’t
really care though because I was just being honest! He went on with his
conversation and left. A few minutes later, one of the nurses from the bronch
room came to me and told me that if I felt uncomfortable during the procedure
that I had every right to write a letter to the department explaining my experience.
She told me that that particular doctor is “old school” and he doesn’t believe
in a lot of sedation. (obviously) The way that she talked and the fact that she
came back to talk to me, gave Doug and I the indication that she felt bad for
my experience, that it has happened to others, and that she didn’t really agree
with it. Even though she didn’t actually say this…I felt this was what she was trying
to tell me. I had reports of both bronch’s and it lists what kind and how much
sedation/pain meds are given and I compared them. I had quite a bit more for
the bronch in August compared to the one this past week. I’m not sure if I will
write a letter…but I do know that for my next bronch next month, I will be
asking to get the equivalent from the bronch in August.
As of Friday afternoon, I still do not know the results of
the biopsy. I did call earlier today, and my coordinator called me back. She
said that the results weren’t back yet but the preliminary results are
negative. She will call me on Monday though and give me a definite reading. I
will probably say something to her about the procedure then too.
I still have not heard anything back from my donor’s family.
I know this process could take a little while. I sure hope they will contact me
as I would really like to get to know my donor. I would at least like to see a
picture of him/her and know who they were and where they lived. I guess
whatever God sees fit for me to know, He will provide that information when the
time is right. And perhaps that time will never be right.
I found some really neat butterfly quotes that I threw in my
blog post here and there. :) I thought they were neat…and I have a few more
too! :) Doug and I just want to thank everyone again for all that you’ve done.
Prayers, phone calls, texts, cards, meals, gift cards, donations…everything is
greatly appreciated!!! We can’t thank you all enough! I (we) feel that God gave
me a miracle and I plan on living life to the fullest with no regrets! :)
An exchange of thought between a caterpillar and a butterfly:
Butterfly: the change you see in what I was and what I am is due to what I did when I was you. I made change happen! I became the change.
Caterpillar: Don’t be so proud of yourself, I am there and will always be, to remind you of your past. You are inspiring, but I am the inspiration. They look AT you, they look UP to me.
~Manali Oak
A butterfly says, “The caterpillar – me is history; my metamorphosis, a mystery; and today…today is a present; my struggle gifted me.”
~ Manali Oak
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