Skip to main content

CF Appointment

I was too busy blogging about the Great Strides event and not having any pictures of my college graduation that I completely left off my most recent CF Appointment, which took place on May 9th.
Rocking my face mask! 
Not much to report.  I've been feeling great, working out, eating good (not as good as before, but still not loaded with candy and pop), and enjoying life.  One weird thing did start the 1st week of May.  I noticed my heart doing some weird things.  It started just once or twice a day, then progressed to many times.  What it is you ask...I don't know.  It's hard to explain.  Typically you don't feel your heart beating or think about it.  But I was watching tv and noticed it started to flutter a bit.  I thought maybe I was nervous watching a suspenseful show.  But then it happened again the next day, and again the following day.  I should have been keeping a record of when it occurred and what I was doing.  Oops!  But, I do know that it has been while I haven't been doing anything strenuous...like watching tv or laying in bed.

Sometimes it feels like a flutter, then sometimes its pounding.  You know that feeling when you go over a bump and your stomach drops?  Well, it kind of feels like that but its my heart.  That's about as good as I can explain it.  I put my Fitbit back on to try to record my heart rate, but it's a piece of crap and died again after a couple days and won't charge or turn back on.  😠

Back to my appointment.  I mentioned it to my care team.  Of course that morning, it did it's weird thing...I went to the gym for my workout and then it stopped.  So for a precaution, they hooked my up for an EKG.  I haven't heard that anything was odd, so I'm assuming it was normal.  Plus, I didn't feel it do anything funny while I was hooked up.  Always the same thing, symptoms never show themselves to the doctor.

So, it has been happening here and there since then.  So, I ordered myself a new heart monitor!!  Plus I want one for working out anyway! 🙂  Let's hope when it comes in that it works!!!  I was told to contact my care team if it keeps up, but I haven't done that.  It's not scary feeling.  I don't feel like I'm going to die.  It's just weird and makes me pause.

I'll keep you all posted.  I've been watching my caffeine, making sure I'm getting some electrolytes & potassium.  

As for PFTS...I was satisfied.  You know me...I want better, but I can't complain that's for sure.  My small airways (25-75%) dropped a bit.  It had been a few days since I did my vest. 😮  I was busy with life...it happens.  Back on track, have no fear!!

                            5/9/17           2/7/17         5/10/16         6/2/15
FVC                        99%             96%             96%             89%
FEV1                      87%             88%             84%             81%  
FEF25-75%         62%             71%             57%             61%

Not much else to report.  My care team has a new doctor, so it was my first time meeting her.  She seems great and was very interested to learn my CF story.  I think bringing some fresh blood into the group is a great thing!  

I had my annual blood work.  Except the Glucose test, I will do that another day.  Was not in the mood to fast til 1pm and I had things to do that morning (the gym!).  Plus, I tell them all the time that it's fine...lol.  I had my bone scan last visit (February), but they STILL don't have the official reading from the radiologist (or whoever it is that reads those).  Crazy, right?  I said I was glad it wasn't a life or death result.  Sheesh!

That's all for that!  I'll keep monitoring this wacky heart thing and see where we go from here.


Just got a new shipment of meds! What a full box!! Cayston, new handset, Hypertonic Saline & Zenpep.  I'll be starting Cayston this weekend.







Comments

Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Pros:
Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

I had my quarterly CF appointment on August 9th.  I left that day for WV, and forgot my notebook so I couldn't share all the numbers until I was back home.  And now, I'm home...watching the eclipse :)  It just happened, we were at 99% totality and it was pretty amazing to see!

So, here are the PFT results:

                          8/9/17                5/9/17               8/16/16                8/4/15
FVC                  101%                   99%                  99%                     94%
FEV1                  89%                   87%                  88%                     83%
FEF25-75%        61%                   62%                  64%                     57%

I'm happy! Glad that the FVC went over 100, just got to work on that FEV and get it back in the 90s.   I was on my 4th week of Cayston and feeling good for the appointment.

I did go early as I had to have my glucose test done - Yuck!  I'm sure that will be fine.

Nothing else to really report.  BMI is…

Pupdate

My little bully babies are growing up.  Sarge & Stella turned 6 at the beginning of July and T-Bone turned 8 at the end of July.

We celebrated Sarge & Stella's birthday at home with some special treats from the local pet store.  T-Bone got to be at his favorite place on his birthday (our cabin in WV).  Unfortunately I was a bad dog mom and forgot his birthday hat and treat, but he got extra loving and sang to multiple times.

T-Bone had his bi-annual check up just before his birthday and had a good report.  We are changing his eyedrops due to the formula change in what he was using - it was making his eyes red and itchy. And then, in his ear (not the one that just had surgery) we noticed a tick like thing in one of the folds. He got very irritated with us when we messed with it, so thankfully his appointment was the next day, so I figured I'd let them piss him off.  Turns out, its not a tick.  The vet said it looked just like the mass that he saw in his other ear cana…