Today, we received
the results of Maria’s latest liver enzymes.
Some of you may recall that Maria has been battling with elevated liver
enzymes ever since the birth of Alayna.
The doctors really do not know what why.
They did basically all the liver tests they could and have no real
reason why. So she continues to get
blood work done every 3 months to see where the levels are at. Her last quarterly blood work showed the
liver enzymes were slightly above the normal range which was actually good
because months and months ago they were highly elevated.
Maria had her blood test late last week and today the office
called and said the numbers were all in the normal range. This is some fantastic news as we have been
seeing her liver enzymes returning to normal.
In my opinion, I think they are returning to normal because Maria has
been eating more. Yes, eating more. I should say more often. I can tell you from first hand experience
raising a child is beyond tough. So
there have been times were Maria wasn’t able to get those 3 meals in a
day. Over the past 6 months she has been
able to eat more often which I think we both agree has improved the liver
enzymes. She will go back in 3 months
for another blood test to make sure the liver enzymes have remained in the normal
level. All I can say is WE are all very
happy with these results!! It has eased the stress on Maria as she was worried
why we never had answers why the enzymes were elevated. I LOVE
my wife!!
Today, was also my quarterly CF clinic. I was actually full of emotions today. I was excited, anxious, nervous all at the
same time. Why is that? Well from my last clinic in Jamuary my PFT
took a dip. I blew a FEV1 of a 66 back
in January. I knew something wasn’t
right then. I felt tired and was
coughing a little more. So I pushed my
doctor to try some antibiotics to see if that would help. I cannot emphasize this enough but it is so
important to have a doctor who listens to your concerns and is willing to come
up with a game plan that all parties can agree upon. Remember “You are your own voice!!”
So I did a month of inhaled meropenum and doxcycline. Yes, you read that right inhaled mero. I know it is used IV but my dr. said it will
work if we inhale it. I did it before a
year ago and it killed my Psuedo. I
finished the meds up middle of March. I
felt really good after the meds.
When I was doing
these meds, a very good cyster friend of mine Tammy who could actually
be my mom. I call her my CF mom. Tammy when you read this be proud you are old
enough to be my mom and kicking CF butt.
Sorry for the sidetrack, but I will tell you Tammy is truly a wonderful
lady and a rockstar CFer and I am so proud to call my friend. We were exchanging messages and she asked me
about hypertonic saline and how many vials I use etc. As many of you all know I LOVE hypertonic
saline more than I probably could express.
I know I am nuts but I call it my Kalydeco. HTS is my Kalydeco until I get Kalydeco one
day if that makes any sense. I responded
to Tammy’s question with I use one vial of 7% HTS in the morning and one vial
3% HTS in the evening. I used the lower dose
at night because previously when I tried to use 7% I coughed through the
night. Tammy told me she uses two vials
in morning and evening of 7% HTS. I
thought to myself hmm maybe I should try that to see if I get more production
in my airway clearance and more mucus out.
I trust Tammy, but I wanted to do a little research and I
was honestly shocked at what I found. It
looks like Tammy is on to something as there is research that points out the
optimial benefit from HTS is achieved with 84 minutes of HTS 7% with an
administration of 10 mls. Here is the
proof.
Administration
of 10 mls of 7% hypertonic saline twice daily increased FEV1 by 12% with a
delivery time up to 84 minutes daily (Ballmann & von der Hardt, 2002; Wark et al, 2005).
Administration of 4-5 mls twice daily increased FEV1 by 3% with a
delivery time of about 40 minutes daily (Suri
et al, 2002; Elkins et
al, 2006).
Treatment with hypertonic saline is a significant additional burden for the
patient. Faster delivery with the new nebuliser systems is being studied (Elkins & Bye, 2006).
You can read more here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2083400/
So with this information I said why not give it a try. I also notice that one vial is not enough to
make my now 25 minutes of vesting. I
usually run out at 15 minutes. So all
this adding a second vial made sense to me.
If I coughed through the night I
would stop doing two vials of 7% HTS in the evening.
To my surprise, I was able to handle two vials which is a
total of 8 mls of 7% HTS in the morning and evening. What did I notice after I started doing
this? I felt like I was moving mountains
of mucus in my lungs. I was coughing
junk out left and right. By the time my
25 min vest session was over my lungs felt so clean. Honestly, it was the cleanest they have ever
felt. I never once coughed through the
night or coughed up any blood.
I kept up with my compliance and adding an extra vial of HTS
every treatment. It was finally time to
see if all this extra salt would impact my PFT. That day was yesterday. I got a clean bill of health from my
doctor. The lungs sound good. I don’t have any real complaints about my
health. It was then off to the PFT
room. I mentally prepared myself to just
hit the ball when I got in the PFT chamber.
Whatever happened after I hit the ball was going to happen. I thought about my FEV1 66 last time and I
knew that it would be better this visit because my lungs felt so good.
Maria came back for the PFT test and she screamed!! My
doctor could even hear Maria from another room and we had the door closed. I got credit for a FEV1 of 74!! What? ??????
I havent’ seen a FEV1 of 74 since August of 2010. That is 4 years since I have been that
high! So going from FEV1 66 to FEV1 74
was incredible. A big 8 point change and
a 12% increase from last visit is hitting a HOMERUN in my book. My
doctor asked what is all the screaming about.
I told him that I hit numbers I haven’t seen in 4 years. He couldn’t believe me! Yes 74 baby! He said well John looks like what you are
doing is really working for YOU!! I told
him maybe he needs to prescribe an extra vial of 7% HTS for all
treatments. He said he would definitely think
about it. He echoed that this saline is
like my Kalydeco as well!
I knew my numbers improved because of my saline. It is really awesome seeing improvements from
things that you are changing. I also
think that my dedication to my compliance is really helping my lungs feel
great. So that is the secret that works
for ME adding an extra vial of 7% saline to my morning and evening
treatment. It may not work for YOU but
is it worth a try? You have to make
that determination. The only way you
will know is if you try it.
***BEFORE YOU MAKE ANY CHANGES TO YOUR MEDICAL CARE ASK YOUR
DOCTOR!!! THE OPINIONS THAT ARE USED HERE COME FROM ME AND I AM NOT A
DOCTOR. PLEASE CONSULT YOUR
DOCTOR!!!!***
.jpg)
No comments:
Post a Comment