Wednesday, March 18, 2015

Worth a thousand words...

One month to the day and my IV-free body demanded another hook-up. Doesn't it have anything better to do?  Obviously it does not, so off I go to my new bed and breakfast in downtown Denver.

I hope know you are thinking "Wow, I wish I could see Sherri in her new digs."  Well your wish is my command.

Tour Guide Sherri at St. Joseph Hospital

Thought it would be a whole lot easier to show rather than tell and as you can see, telling makes me winded anyway.  I've been here 6 days so far with probably another two weeks to go. Here's hoping all goes well and I'll be picture perfect again soon.

Tuesday, March 17, 2015

Karma survival...

Believe me, when you hear the words, "Attention: passengers waiting for departure of flight #1353 to Raleigh/Durham, there will be a slight delay as we check a mechanical issue with the plane," it doesn't inspire confidence. That was only the beginning of the bad airplane karma we experienced on our recent trip to Duke. A half hour later we were told that a new plane may be required if the repairs couldn't be completed. Another hour passed until my slightly shaky legs carried me down the walkway and into the now doomed fixed airliner.

Fast forward three hours and said airliner is now descending towards its intended North Carolina target. The only problem now is the plane is pitching violently with the ground rapidly approaching. Holding on tight to my seat, my mind envisioned a lack of runway, foam, slides, safety vehicles, you name it. Evidently I wasn't the only one thinking along those lines since three minutes later, our wheels made bumpy contact with the runway and the entire plane full of passengers erupted in cheers and clapping.

My appointment with Dr. Palmer went very well...too well for a transplant at this time. Yup, not terribly surprised but thought my increased IV usage might put me in my window again. The waiting game goes on.

The Monday Duke visit was to be followed by a Tuesday morning flight home but the entire state was bracing for an ice/snow storm. We checked our flights Monday night and already saw our flight was delayed. We woke up to ice coating the outside world and a cancelled flight. With nothing to do, we ventured out on the roads and hit the mall. It was like a ghost town--only a fourth of the stores were open. Native North Carolinians freak out when it snows (4 days later the kids were still out of school.)

Josh was able to squeeze in on an early Thursday morning non-stop flight but Rheid and I's best option was a longer 4:00 flight routing through Atlanta. How bad could that be, right?  Well, our "plane of deliverance" had an issue with the baggage loading system and we were about an hour late taking off--we are not off to a great start. Then we landed in Atlanta and all but 7 of us deboard the plane. We wait until the fully-booked flight is finally seated and then...nothing.  Finally the captain comes on the speaker and announces the airplane's fuel tank was mistakenly overfilled. He apologizes for the snafu and explains that the plane is now too heavy to take off and if we managed it, we would then be too heavy to land. LOVELY. So we now wait for the plane to be de-fueled and then refueled again. What started out to be a twenty minute delay turned into two hours of being stuck at the gate and unfortunately stuck in our seats as well. By the time we took off from Atlanta, the passengers trying to make connecting flights in Denver were livid. I just wanted to get home.

We finally landed in Denver over 3 hours behind schedule and because of that, there was no empty gate available for us. So we sat, again, on the tarmac waiting. By this time I was ready and willing to go down a slide just to get off the bloomin' airplane.  Sheeesh! With the way our luck was going, we were lucky to be on the ground and not on the nightly news. I barely had any battery left on my O2 concentrator by the time we got to our vehicle. Thank heavens I made it.

The following week we celebrated Rheid's birthday by going out to eat at Bunz and lighting cupcakes afterwards.
Rheid hits the big 52. Love that guy.

Sunday, February 8, 2015

Will it or won't it...

What will 2015 bring? Will it bring new lungs, better health? Or will it bring more of the same? Sometimes it would sure be nice to know. After living through two of the hardest months of my life recently, I hope to be prepared mentally and physically for whatever comes.

I started IV's the first of December and was excited to stop them the first week of January. My thrill was short lived as my newly acquired 31% lung function dropped to below 26% only a week and a half later. Back on the meds I went and I'm still on them. Having to be on nearly continuous/continuous IV's can put someone within their transplant window. I am returning to Duke this weekend for my standing appointment with Dr. Palmer. I will probably find out on Tuesday the 17th what the team recommends. Will I be looking out that window once again?

Amazingly it has been 3 years since I first traveled to Duke for my transplant evaluation--it was in February of 2012. I've managed to go longer than they predicted I would before needing to come back for transplant. It's been a long time to worry about process the whole thing.

Although I felt miserable with nausea, weakness, dizziness, and anxiety through the holidays, I still had some great moments with my family.

Christina was able to fly home for
Christmas this year. She just moved up
a rank to Petty Officer Third Class!

Maggie waiting for her turn to play the candy
bar game on Christmas Eve.

Wrapped in tons of saran wrap, candy bars were freed
with glove-covered hands until the next person
rolled doubles on the dice then they got a chance
to unwrap as much candy as possible. It was
wild and crazy fun.

Max demonstrates the next game--
candy cane pick up. It was harder than it looks.

Christmas morning present opening. Santa brought Christina
a pair of Uggs.

We didn't take too many pictures Christmas morning because
we got distracted by gifts. Rheid gave me a massage certificate.

The night after Christmas we took the kids to Candlelight Dinner
Theater to see Miracle on 34th Street-The Musical. Rheid and I
were excited to share the experience with them since we've been
there several times. How were we to know that not every wonderful
movie should be turned into a musical...yeah, not as impressive
as we would have hoped.

Had I been feeling better and the weather more
cooperative, we would have taken a trip to
Utah to see this beautiful couple, my niece, Krista, and
her husband, Logan sealed in the Draper Temple.
Our hearts were there; I was so sad to miss it.

And just cuz it was so cool that I captured this picture, I am
sharing the 1:00 a.m. photo I caught of two marauding raccoons
who had pulled our bird feeder down and were snacking on
our premium birdfood--blast them--until I surprised them and
the more timid one ran over to the flower bed (blob near
top right of photo.) We had caught one raccoon a couple of
times but didn't know we were being tag-teamed.

Thursday, December 11, 2014

A look back at Fall...

I just took a gander at the past four years of December posts and I noticed two very distinct themes: not feeling good for the holidays and being woefully unprepared for it all. Well, so far this year continues in that grand tradition. Instead of going into the hospital last week however, I opted to try home IV's. I've felt very nauseous and that has definitely brought out the Grinch in me. Along with tummy troubles, my ol' nemesis, anxiety, has reared it's ugly head. It's pretty darn discouraging I must say. But hopefully I can use my cognitive tools and cut this unwelcome holiday visitor's stay short.

The previous two months in pictures:

Maggie and Max were the cutest of our trick-or-treaters. With
warm weather, we were ready for swarms of kids but alas, our
neighborhood is not as young as it used to be and we only got
a handful of treat seekers.

Our roofers came during our few days of sub-zero weather. Of course,
it has been our only snow so far. I felt bad for them working in
the bitter cold. Our hail-damaged roof looks marvelous now.

Our return to warmer weather allowed Josh and Rheid
to trim our front tree. We've babied it along from
fire blight for 3 years and it was now time for
drastic measures.

About half way done and our beautiful tree is
beginning to look rather spooky. A sad but necessary
attempt to save its life.

The 19th of November wasn't Josh's finest day. His Ford Focus
was totaled so he spent Thanksgiving weekend looking
for new wheels. I was so grateful he was safe.

There may have only been three of us but we had a full
spread of Thanksgiving vittles. After eating leftovers for
a week, we were done with turkey and all the trimmings!

Sunday, September 28, 2014

Three weeks of change...

Postcard from my new digs - Saint Joseph Hospital

Change is hard. Hard. Hard. Hard. Thirteen years and numerous admissions (twenty since the beginning of 2008) at the University of Colorado Hospital came to an end this month. National Jewish Hospital decided to change their partnership/affiliation to Exempla Saint Joseph Hospital, lovingly known to the locals as St. Joes.

Just finding this place in downtown Denver takes effort but finding my room, #4410, proved daunting. Stranded on the 4th floor in the hospital proper with suitcase in tow on August 28th, nothing looked right. Finally we happened upon a doctor, who not really knowing where we belonged either, called for help. Armed with directions, she then turned us around and personally escorted us across the elevated walkway to a medical building where the new cystic fibrosis unit resides. Yep, I am residing in an un-hospital. Saint Joseph is building a new facility which is scheduled to open in December of this year which I am informed will be incredible. All I can say better be!

(Editors Note: I am now writing/blogging this over a week after being discharged on the 18th of September. Due to internet issues--a connection that wouldn't last longer than a few minutes before you were dropped and made to resign in again as a guest--I finally gave up on finishing this post before my computer became a flying projectile of frustration! It took me 3 hours just to get to this point, sheesh.)
Notice the 4th floor glass walkway between 
the hospital and where I was tucked away.
The circular towers were built in the early 
1960's and this whole building will come 
down once the new one is completed.
Old outpatient orthopaedic surgery rooms in 
this building house the temporary CF unit.
The original Sisters of Charity of Leavenworth/Saint Joseph
Hospital located just to the north is architecturally
beautiful and is a protected historical site. This picture 
isn't doing it justice. 
Things I liked about my new bed and breakfast:

1. The nurses were fabulous and eager to make the transition as easy as possible. They didn't have CNA's so all your needs were met by the nurse. I kinda liked that.

2. Respiratory therapists (RT's)were efficient and made notes for each other so I didn't have to repeat myself every shift to explain how I wanted my treatments to flow. Another plus was the RT's all seemed very "normal." From my past UCH experience, I thought being a little off-kilter was a prerequisite for being hired as an RT. Thankfully, not so at St. Joes.

3. Mini fridge in my room was the bomb. At first I didn't think I would really use it. But Rheid made me a peach pie and brought other snacks that made life more yummy. Plus, if my tray came while something else was going on, I could put my milk or other cold stuff in there and not stress. After all, cold milk on your cereal is a wonderful thing.

4. I liked how friendly everyone seemed to be. From radiologists, to transport workers, to housekeeping.

5. Nice large room with wood floor, exercise bicycle, comfortable bed, and darker room made for better sleeping.

Things which deemed my new bed and breakfast undesirable:

1. I am unable to express just how poor the meals were at St. Joe's.They put the "hospital" in hospital food. When a friend of mine found out I was at St. Joe's (her father had been an inmate patient there for an extended stay), she surprised me and had Chinese food delivered to my room. Wasn't that sweet! It tasted sooooo good. I only ate half so I knew I'd have something palatable to eat the next day. (Mini fridge to the rescue.) Rheid made me two wonderful Sunday dinners and brought in Noodles & Co to help my tortured taste buds. (He tried the food once and wasn't too keen on sampling any more.)

2. Too many people on a computer system not built to handle that much traffic is a recipe for cyber fury. Honestly, there were times when it felt I spent more time trying to get logged into the system than actually using the internet. I found evenings were a little better when there was less demand on the network. I usually spend a fair amount of time doing indexing/genealogy but after a few batches, I gave that up. It was just too darn frustrating. So I decided to try out the origami kit I've brought to several inpatient stays but never got around to doing much with. This is my result.

Just call me the Origami Master. I can now fold jumping frogs,
simple swans, flapping birds, and cranes without peeking for
help. I also made a kimono, rabbit, and a ball.
3. There was very limited space to walk for exercise and this building was full of doors which you could get out of but not re-enter. Consequently I spent more time in my room. I really noticed my conditioning had decreased once I got home and tried to walk up the stairs. Yikes, you can sure lose muscle strength fast. I know that is why they stress walking so heavily pre-transplant.

All in all things went well with just a couple detours: needed a gastro fluoroscopy to roto-rooter my slow bowels, and needed TPA to clear a blocked port caused by nurse's error. I survived my 3 weeks of change.

Dr. Palmer--one of the
tx team big wigs.
DUKE UPDATE:  Two days after discharge from the hospital, I took my scheduled trip to Duke to meet with the transplant team. This time I had an appointment with Dr. Palmer, pulmonologist. Now all the lung doctors have met with me and know who I am. He was great and answered several questions I had about being an older CFer and transplant outcomes. The team will meet on my case Tuesday the 20th. I'm expecting they will say to hold course and keep going along as I have been. Sigh. It's hard to know what I want them to say anymore. When I feel awful before going into the hospital, I feel like I am ready for transplant but then once I am fixed, I want to wait longer. I am a transplant schizophrenic!