It has been a very stressful week for me and my family but I
know we will get through this so here is a recap of all the excitement that has
been going on.
Monday, was my CF appointment and it was also time for Maria
to have her liver enzymes checked again.
If you are new to my blog Maria has had elevated liver enzymes ever
since the birth of Alayna and we still really do not have an answer why they
are elevated. I knew going into my CF
appointment I wasn’t feeling 100% like myself.
I was battling a cold for close to a week this past Monday. I had a sore throat and was feeling
congested. My appointment as far as the
exam went well. The doctor told me that
I sound uninteresting as usual in my lungs. That nothing was rattling around or
anything like that. This usually is the
case where I have nothing loose or rattling in my lungs. I told him how I was feeling lately and he
wasn’t to concerned about me having a cold as he said colds can last up to 14
days. This coming Monday will mark my 14th
day and I am feeling better every day.
Next, came my turn to battle the lovely pulmonary function
test. I was really anxious about the
test because I knew going in I wasn’t going to see numbers I am use to. But I kept that in the back of my mind
because before I got this cold I was feeling great. To review my numbers from my last visit my
FEV1 was 72 and my FEVC was 96. The
higher the numbers are the better! So I
sat in the booth and put the nose clips on and blew my lungs out. To my dismay, I knew as soon as I had the
first test it wasn’t going to be a good PFT day. I asked the RT what the score was. He said, “FEV1 62 and an FEVC of 93”. He
asked me, “Are you feeling sick?” Well yes I am. I have a cold! Ugh I hated seeing that number
though. Even though I knew it was going
to be down from last visit I didn’t expect to see that. I blew two more times and they were all
FEV1’s of 62. To sum up how I felt this
is how I would explain it. It was like I
was in a race trying to catch the runner who had a 10 second head start. The
cold that I have was like holding me back 10 seconds at the start of the race.
But here is the thing my FEV1 was significantly down. I asked the RT when was I ever this low. He said I blew a FEV1 55 three years
ago. I was kind of shocked by that as I
don’t remember a number that low. Over
the last 2 years I have been between FEV1 68-74. So I know for one thing that my FEV1 will
bounce back up when I start to feel better.
If I look at my FEVC 93 it wasn’t that far off from my 96 last
time. That makes me feel better because
my FEV 1 will come back up! I just have to think about it for the next 8
weeks. I know people tell me to not
dwell on it but I know I will. But I
will be back next time to conquer my PFT battle!
As for me taking any antibiotics we will wait to see if I
can shake this cold on my own. My doctor
also wants to see what my culture shows. So other than a low FEV1 it was a “normal”
clinic appointment. But the one thing
that I loved about my appointment was Alayna and Maria were there. This was the first time for Alayna to visit
the CF clinic and she did really well.
My doctor loved her and paid more attention to her than to me. I am
already use to this as this seems to be the new “normal” in our house.
After my clinic appointment, we were off to get Maria’s
blood drawn for her liver enzymes. Well
of course by the time my appointment was over it was lunch time. All the lab techs and blood draw areas were
either full of people waiting to get blood drawn or the lad was out to
lunch. By this time Alayna was getting
super fussy. So we decided to head to
another branch of the hospital in another part of town.
We arrived at the branch of the hospital where all magic
happened to help create our miracle Alayna.
Since we had Alayna with us we took her to the IVF clinic. They were thrilled to see all of us. This was the second time the doctors and
nurses were able to see Alayna. All they
could say was how perfect she looked. Oh
and Alayna loved all the attention.
Maria was finally able to get her blood drawn at the IVF clinic to check
her liver enzymes. The results were not
going to be final until a few days.
Finally, the nurse called on Thursday and told her that her
liver enzymes are elevated. OH NO!! It
was crushing to the both of us : ( Her last blood test before this the liver
enzymes were normal but on the higher side of normal. This time they were even higher. So why are they still elevated almost 10
months after giving birth to Alayna?
That is the question that we are all trying to figure out. As some of you may know Maria has had an
ultrasound, MRI, CT scan, and even genetic blood testing done on her
liver. In all these tests, they have yet
to discover anything that would warrant elevated liver enzymes. Now, its time to have a biopsy performed on
her liver which was the last test they were talking about when we first started
this process. The biopsy will be able to
show if there is any cirrhosis or “fatty liver” or anything else that could
possibly be wrong. The biopsy is scheduled
for this coming Tuesday. I am thankful that by the end of the week we
should know the results of this biopsy. I am hoping and praying that Maria fits into
the category where some people just have unexplained elevated liver
enzymes. It does happen from what we are
told. So if you could keep this family
in your thoughts and prayers that would be very much appreciated.
We are now back in the boat of unknown. This boat we have
been in before numerous times over the last two years and it’s not something
fun at all. But I know that we will land
back on solid ground very soon. Maria is beyond a strong person and she has
shown me that when you get knocked down you will get up and fight again and
again. I know she wants nothing more to
be healthy for this family and it really shows every day.
There have been people who tell me that we are such a strong
couple and a family. I have to say that
WE get stronger from these challenges that WE have faced TOGETHER over these
last two years. In the last 2 years of
our life, I have found that WE as a FAMILY may bend but nothing will ever break
this family no matter what.
Tuesday, came along and it was lay off day at my
company. First off I was not selected
during this process. It still was a very
sad day though. I came in that morning looking
to talk to my friend like I do every morning to find out she was clearing her
desk as she was one of the selected individuals. This was really awful to see my friend
leaving this place like this. It was a
shock!! But if there is anything that can be positive through this was that I
made a great friendship. I ended up
giving her all kinds of advice while she worked here and we really had some
great chats. Not only did we talk about
various things I was able to let her into my tight knit CF life. You will be missed my friend! But we still
will be in contact as there is no denying that.
Wednesday, I was talking to a CF friend of mine and was
asking about her most recent clinic visit. Unfortunately, there were talks at
the appointment that no CFer would like to hear and that was the possibility of
transplant. As awful as that sounds lets
all be thankful that there is this option for us. As I have said to many people lately I
believe you met people for a certain reason.
Not only am I this person’s friend I am here to help provide anyone a
positive boost when it comes to this community.
Maybe one of the biggest reasons why I am this person’s
friend is that I am going to give her an opportunity to reach out to my mom’s
cousin who has CF who underwent a lung transplant a year ago. If my CF friend chooses to go through with
getting listed she will be attending the same clinic my mom’s cousin did when
she got her transplant. As I mentioned
in a prior blog post my mom’s cousin is very outspoken and reaches out to
people who are going to be going through a lung transplant. I cannot wait to arrange a way for these two
ladies to communicate. In life, its all
about helping others and I hope this helps my friend.
Well to top off the week, on Saturday I had a visit to
ER. Yep, you read that right. It was honestly my fault because I was being
a moron and trying to open the garage door opener with a butter knife. My hand
slipped from the knife and sliced my thumb open. There was a good amount of blood even from a
butter knife. I sat down at the kitchen
table and then before I knew it I heard Maria really upset on the phone. I apparently passed out because John and
blood do not mix very well. I am so
thankful that Maria was right by my side and I was luckily sitting down because
who knows I could have fallen on the floor.
The paramedics arrived and didn’t leave until I had coloring in my
face. I guess I am pretty good at
scaring people. It wasn’t my first time passing
out from blood!!
Maria took me to the ER and I ended up getting 3
stitches. I have to have them in for
over a week as the cut was pretty deep.
Yes a butter knife is dangerous.
I learned my lesson to never open anything up with a butter knife. Oh, and the paramedics opened my garage door
opener very easily. Ugh what mess I made
for me and my family.
So that is a wrap. The family and I are done with this
week. I would like for you all to say a
prayer or do whatever you do to keep Maria in your thoughts this week. She is the woman who keeps this family
together day in and day out. Without
this girl by my side every day I wouldn’t be the person I am today. WE WILL GET THROUGH THIS!!
Alayna standing with one hand!
Sending good thoughts your way during these trying times. Isn't it tough how sometimes the nasty stuff keeps piling up all at once? And piling up?? Overwhelming!!! I hope things even out for you and your wonderful family soon.
ReplyDeleteThanks for the good thoughts :)
DeleteOK, I know this week really sucked for you guys, but I just have a feeling that "getting 3 stitches from slicing my hand open with a butter knife" is going to become one of those "hilarious in retrospect" stories. Once a little more time has passed. ;) I am really sitting here legitimately wondering how that was possible!
ReplyDeleteOn a more serious note, though, sending love and prayers to you guys!!! Sounds like a rough week all around. :(
Yea, the stitches sucked :( I think Maria will use this story on me for years to come!!
Delete