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!

Saturday, September 6, 2014

My summer getaway...

With the way this little body is behaving itself these days, it has become difficult to schedule any kind of vacation with much success.  So I was thrilled when getting on two oral antibiotics made me feel confident enough to try a short trip to Utah to visit family--my only summer getaway.

In order to keep my So-you-made-a-plan-yeah-right Gremlin from rearing it's nasty head and spoiling my trip, we decided to keep it on the down low until the morning we left town. Letting people know too far in advance that I am coming just gives fate a chance to jinx it all.

We called Rheid's folks Friday morning to let them know that we were coming that night and found out we were going to serendipitous-ly be a part of a Lungs 4 Sherri garage sale that weekend. My sweet in-laws were doing a fundraiser for me! Because of their hard work, they added almost $500 to my transplant fund. I am so grateful for their support.

A bargain hunter's view of the front lawn. Mom Schloss is hanging out in the
garage managing the money and staying out of the heat.
One reason I wanted to make the trip was to finally have a chance to meet my new nephew-in-law. My sweet niece got married almost a year ago and I've managed to flub up every single chance to meet him previously.  Look at what a cute couple they are...I totally approve!

Krista and Logan stop by before they jump back in their 
moving van on their way to new adventures in Logan, Utah.

Now the main reason I wanted to come to Utah was to see this guy, Elder Kevin Weatherford. I managed to miss his missionary farewell so I sure wanted to be a part of his return. His mission was served in the Missouri Independence mission for 18 months and in the India Bangalore mission for the final 6 months. Visa complications kept him stateside for so long, he worried he would never see the land where he was initially called. It was fun to hear about all the challenges he had adjusting to the Indian culture and see the unique souvenirs he brought home.

Elder Weatherford and his excited-to-have-him-home parents.
Beautiful Butcher girls after church.

Noah bravely models the native dhoti-a
cotton wrap that creates a type of pant.
Think Mogli attire here.

Seeing the back of the dhoti
made us all bust out laughing.

Unfortunately my phone camera didn't do
these pictures justice but the moment was
too fun not to share, Love these boys!
Just love my family and am so blessed to be with them, if only for a summer weekend.