Saturday, January 26, 2013

My Friends

Lately I can not stop thinking of my friends.  Shawn, Kelly and Rhi who passed away within a few short months of each other.  It makes me so incredibly sad.  These three were more than "just" CF friends.  They were close to me, special.  Shawn was even family.

Each three were at various stages of CF progression.  Shawn was almost 4 years post transplant, diagnosed with cancer (cancer did not get him - jury is still out on what really did).  Rhiannon was "just sick" in for a routine exacerbation when she declined fast and was immediately too sick to be activated on the transplant list.  Kelly had just received her wonderful new lungs, but within days, they became sick and would not work as they were supposed to.

Each of these people held a special place in my heart.

Kelly - sweet sweet Kelly.  She was a wonderful photographer.  We joked that she could fly out to photograph my wedding.  But instead maybe an anniversary down the line when she had gotten her second chance.  I got to meet her in Boston a few years ago for Paul's memorial.  She was so beautiful and sweet and artistic.

Rhiannon - Oh Rhi.  She was my first CF friend.  When I first joined the online CF world a few years ago (2008ish), she sent me a private message after a post I had made.  We were both going through similar issues with our boyfriends.  Neither wanted to deal with CF but neither was leaving either.  Well mine was halfway through the door.  We chatted often and came to realize that she was "the slightly older, slightly sicker version of me."  It was a joke we kept all this time.  We maintained that friendship and I was so excited when she married Kev.  I tried to make it to the wedding, but it wasn't possible.  I wish I had been able to meet her in person.

Shawn - Shawn is the reason I am married.  Thanks to him and his wife, P's sister, I never would have met P.  I never would have met my soul-mate.  Shawn was full of life and fun and he always knew someone to help you out.  He was a man of all trades.  He was my brother in law.  He was P's best friend.  He was our best man.

These three fabulous people were dear to me and now they are gone.  And some days, as I am driving, I think of them and I can't help but let the tears flow...

Wednesday, January 16, 2013

Port De-Accessed!!!

I am officially de-accessed!  It feels great to have all that tape off of my chest finally.  I still have the steri-strips from the placement but they are making their way off.  One has already come off, the other 2 are loose.

Getting the needle out was quite the effort!  The nurse was going to have me do it but I was having issues getting the tape off and since I wasn't looking in a mirror it was hard.  So I told her to just do it and I could do it the next access time around.  Good thing she did it!  She was literally pushing on my chest trying to get it out!  The tape was all jumbled around the site and the needle didn't just retract out like they usually do.  Very odd!  It didn't hurt at least.

My FEV1 has stayed the same.  I was at 1.14L (39%) at my last appointment in December and I was 1.16L (40%) today.  Not much of a difference.  But I feel great so I can't complain!  I seriously feel like I am at my baseline, which is kinda scary thinking that my baseline is 40%?  Not horrible, but not the 43% I am used to.  3% is a difference ya know!!!

I am glad to be done with the nausea inducing meds!  It will be great to sleep a full nights sleep and not worry about feeling like shit a good portion of the day.

Saturday, January 5, 2013

MRI - results


I hate that bright white, loud, claustrophobic machine with a passion.

Ativan helped though!

I was able to survive the whole 40 minutes without freaking out or even thinking of freaking out.  P was funny.  I texted him right before I left to go and he responded that with all the serious things I face, a TUBE scares me!  So true lol.  But fears are rarely rational.  And apparently can be subdued with some good drugs.

It was also nice to have the meds fed through my port.  Betty and I are definitely enjoying the new freedom from PICC lines.

Later on the weekend doctor came in and said the results showed the cyst had not grown since November and didn't show anything sketchy.  But I will wait to hear from my GI doctor before I start celebrating completely.  But its still good news and I will take it.  Now I just have to do this every 6 months to be safe....

Thursday, January 3, 2013


Well its done!  I finally got my port!  I think I shall name her Betty, after Betty White.  After all, that broad is still kicking hard core at 90 something....or is it 80 something?  Either way, meet Betty:

Betty and I are learning to get along.  She is a bit sore right now, but so far she is loving her new home.  I found out today Betty is a power port!  So I can get contrast dye injected through her.  She is a Dignity CT Implantable Port.  I have a little card to carry around with me so Drs etc can know what she is.

I have been sleeping pretty much all day today so far.  The meds are kicking my ass.  Last night I was totally out of it for quite a while from the procedure.  At first I thought the Versed was making me nauseous but turns out its more than likely the IV antibiotics I am on.  So looks like I have 2 weeks of feeling cruddy ahead of me.  Luckily tonight I am feeling more like myself.  I was able to walk on the treadmill this afternoon for 23 minutes, then napped for 2 hours lol.  Hoping that the dinner I ordered tastes better than the breakfast and lunch I had early.  Both are things I normally eat but with the nausea I had no appetite.  Right now I am starving so fingers crossed I eat it ALL!  OK, dinner came as I was blogging and I ate all that I could.  The potatoes tasted like ass so I skipped those but everything else is gone.  I even ordered a sandwich for a late night snack lol.

Since the flu is running rampant in the hospital I will be out of here by Monday at the latest.  I might even see about Sunday, if everything stays on course and I have no issues with Betty.  And tomorrow I am getting the MRI of my pancreas done with lots of Ativan so I don't freak out.  I kinda wanna be knocked out but we will see.  If i freak out while in there they may have to ;)

I am also sad to say that my friend Kelly passed away on the 1st.  I had no idea she was gone when I posted the blog yesterday.  I am heart broken.  Kel deserved SO MUCH more than she got.  But don't we think that for everyone that passes.  Her organs were able to be donated to others and her lungs are going to research.  So in the end, Kel was able to help a few people out.  That makes me smile to know she will live on as well.

Wednesday, January 2, 2013

Prayers for Kelly and Help is Needed

If any of you out there have any experience with ECMO please head over to Kelly's blog.  They need your help....and prayers for Kelly's lungs to heal.