Cushing's Info

LisaFriday has shared this on the message boards and has given permission to share with others who are interested in being tested at Dr William Ludlam’s extensive “Camp Cushie”.

General information on Seattle Pituitary Center at the Swedish Neuroscience Institute can be found here.

Lisa writes:

I just attended Dr. Ludlam's Camp Cushie July 12-16th, 2010...
I plan to use this thread to educate/inspire/encourage/advise anyone planning on going to Camp Cushie...
I will update this thread every time I think of something else that I think would be helpful if you are headed there...

YOU are going to LOVE:
Dr. Ludlam- This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Jill Evans, Dr. Ludlam's Patient Care Coordinator (PCC)- This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Priscilla and Yolanda (his other PCC's)
Jennifer Mercado (one of his two...never met/saw the other) Nurse Practitioners
Joy and Sigrid and Rebecca and Deb and Bill and Nancy and Maureen: Ambulatory Infusion Nurses
PICC line (You get this first thing Monday am. Will not get 'needle stuck' from that moment on...OMG...best gift ever!!!)
Cafeteria food...is yummy and has a huge variety of food that is quite affordable...if you eat a lot, you might spend $20/day...
The INN at Cherry Hill (5th floor of hospital) $75/night for 2 single beds, $80/night for 3 single beds...not fancy, but, clean, comfy and convenient...a MUST! Call Paul at: 206-320-2164 FAX: 206-320-3526
The ICE MACHINE in the communal kitchen at the INN...it is 'tiny ice pellets' and makes my water taste so yummy!

What to bring:
Short sleeve shirts because of PICC Line
Even in July, it is cool outside in the mornings, so, bring LAYERS...
Very comfy clothes (draw string pants/with no metal/sports bra/with no metal...so you do not have to change clothes for MRI/CT)
EXTRA Alarm Clocks, phones, etc...YOU will have blood drawn every 4 hrs for a couple of days...you CANNOT be late or miss a draw!
Stationary for Thank you notes...you will want to write to these incredibly helpful, understanding, encouraging people here...I promise!
A 'shower caddy' to hold your shampoo/razor, etc. because the shower is tiny and has no where to put anything except on the floor of the shower, so, it is difficult to bend down to get what you need...
Robe and Slippers to go down to 1st floor in the night to give your 4 hr. blood draws
Sharpie Marker to label your food/drinks/groceries in the communal kitchen's refrigerator...
Zip loc bags (all sizes) to put leftovers/food/snacks in the communal refrigerator at the INN
Tide Pen for little stains you get along the way...there is a nice washer and dryer with powdered washing soap...NO dryer sheets or softener or bleach provided...
Snacks for your room...popcorn was great for me... there is a microwave in the communal kitchen too.
Lap Top, WiFi is available and is working great in my room right now as I type this info to you!
Money for Starbucks...it is located in the lobby on the first floor!
A tote bag (see below)
YOUR personal pillow CASES...they can cover these not so great pillows and make you feel a little more at home...

BRING A TOTE BAG to carry:
YOUR UFC Urine Bottle...
YOUR "HAT" to catch your urine...HA/HA (only need this big bag for Mon/Tues/Wed)
YOUR Cell Phone (Jill and Yolanda will be calling often...answer the phone...things change or are added often)
A pad of paper and a pen to write down these changes and times/directions/phone numbers, etc...
YOUR normal 'purse' stuff for the day...

HERE ARE "TIPS" that I think you might need or want to know:
(Listed in Cushie Brain Order...just as I think of them, by no means are they listed by importance...ha/ha/ha!)
A taxi from the airport (SEA TAC) to the Swedish Hospital Cherry Hill Campus takes about 15 minutes (about $30 tops)
Give them this address to plug into the GPS: 550 17th Avenue Seattle, WA 98122
*If you arrive after 9:30pm-6:30am you must enter through the ER...the ER receptionist will give you your key and directions to the 5th floor... let them know in advance that you will be arriving after hours so that they will be expecting you.
When you check in to the INN, ask for one of the two box fans that a fellow Cushie, HOLLY, donated to the INN for us Cushie's to enjoy.
Bus No.3 or 4 (right outside the hospital) on Jefferson St. will take you downtown to the: PIKE Market, Nordstrom, Macy's, McDonald's, Louis Vuitton, PF Changs, etc.
It costs $2...you need exact change. Ask for a 'transfer' ticket and it will get you back to the hospital...it's roundtrip!
The MRI has headphones for music and they give you earplugs...very relaxing!
Ask for copies of your MRI/CT and the notes that go with them and all of your lab results...fill out a form on Friday and take it to Medical records on 1st floor, they will mail them to your home...this is great to have for your personal file.
I actually made friends with the MRI/CT receptionist and she got me copies that I picked up from her the day after the tests...Her name is Sherri...love her!
DO NOT DRINK anything 30 mins prior to any of your 4 hour blood draws...it will mess up your results...they do not tell you this...IMPT!
Order the PICC line protector on-line, it is $40...I loved it and will try and find the website and put it on this thread later...sorry.
I was so busy during this week with testing that I really did not have time to read or watch DVD's...
The TV in the INN has about 15 channels: The History/Discovery Channels, A&E, CNN and a local channel- KOMO news, etc.
In the past, some Cushie Camp Patients recommended bringing a soft-sided cooler to keep your urine jugs cold...I brought one with me but, I did not need it because, now, they put a tablet in your jug that mixes with your urine. This additive no longer requires it to be kept cold...YAY...so much easier on us!
Any prescriptions you may need filled (Dexamethasone for the DEX/CRH test) can be filled at the Pharmacy located on the first floor across from the Gift Shop...The Hours are: 9am to 5:30pm M-F.

If you get scheduled for an Octreotide Scan:
(Only given this test if an ectopic source is suspected...only a few people will have this additional test)
Sue, Raphael and Chuck are wonderful!
You will be injected with Radioactive Isotopes the day before the scans. These isotopes will bind to the bad cells and will show up (light up) on the scan.
I had my head/lungs/abdomen scanned...all clear! YAY!

For this scan:
They will ask you to purchase laxatives. I got them at the Pharmacy on the first floor across from the Gift Shop. I also bought and used Magnesium Citrate to clean out my bowels the nights (2) before the scans... a clean bowel will make the reading more accurate.
OK, well, this is a good beginning to my TIPS LIST for Camp Cushie...

I will continue to update THIS THREAD as my mind remembers things that I think could be useful for you to have:
THE BEST Camp Cushie Experience possible...
While you are there, may you have the "HIGHS" of your Cushie Life!

Lisa who flew to Seattle all the way from Alabama!