And It's About Time There Was Some Support For Cushing's!
Robin (staticnrg) has provided info for both Dr. Ludlam and Dr. Friedman in her PageFlake at http://www.pageflakes.com/staticnrg.ashx?
Info below from Testing at Swedish
1) Patients can go to the medical records office at the Swedish Medical Center to get copies. This office is located in the same hall as the Admitting Desk, walking away from the Starbucks. You can ask someone to tell you where it is.
2) You will only be allowed to get your records one time in person. Hugo works there. He is very nice, but he made it clear that he can't print the test results over and over again.
3) Go on the Friday morning before your last test. The records will include your imaging reports (MRI/CT scan) as well as all blood work done that week. Stim test, salivary cortisols, and UFC results will not be included in this set. (UFC and salivaries are processed at different labs, not at the Swedish).
4) You will sign two identical medical release forms: one for the immediate release of medical records, one for the release of records after all of them have been reported.
5) You can review your results with your new testing buddies as they take your blood every 15 minutes during the dex supp test. You may want to bring a highlighter to highlight the date and time, as they list 4 different times. It is very confusing. The time you want to use is under END DATE/TIME on the far right side of each test.
6) The results sheet is very difficult to read, and they don't put the correct lab ranges. Therefore, it is very difficult to tell how high your cortisol is. Take some time memorizing or writing down those lab ranges and diagnostic levels of the various tests so you can make sense of your results. Ah heck, here is what Dr. L's office told me (you still should memorize it!). I have yet to determine if Dr. L. uses 'suggestive' and 'diagnostic' interchangeably.
a. midnight serum cortisol. Normal range is less than 1 (I think). Over 5 = suggestive of Cushing's.
b. random ACTH plasma. Normal range is 5 - 25. Over 48 = suggestive of Cushing's.
c. midnight salivary cortisol. Normal range is 0.05 - 0.17. Over 5 = suggestive of Cushing's.
d. urinary free cortisol test (UFC). Upper limit of normal range is 50. Over 50 = suggestive of Cushing's.
e. random blood cortisol levels (taken every 4 hours for 32 hours). Over 28 = suggestive of Cushing's.
1) I did not try this, but you might want to ask if you can fill out a form requesting this when you show up at your appointments.
1) write out a letter with the following info below, which I took directly from my copy of the triplicate form I filled out there at the hospital.
· patient name
· patient number (listed on all your lab tube labels-get before you leave)
· address
· telephone number
· social security #
· birth date
· dates of medical care
· to be disclosed to: SELF (one recipient only, according to the paperwork I have)
· purpose of: CONTINUING MEDICAL TREATMENT AND CARE
· signature is important!
2) fax the letter to Medical Records department at the Swedish Medical Center: 206-320-3270.
3) wait 10 minutes.
4) call the medical records office: 206-320-3850, then press 2. Hugo will answer. Tell him you faxed a request for medical records, and you wanted to make sure they received it. Then ask how long it will take to process your request. After all my results were reported, they mailed me 19 pages of results. I received the batch of test results 10 days after I left the Swedish. Part of that time was waiting for the rest of my tests to come in. Not too bad. I had 15 pages of 19 total pages before I left Seattle.
1) create a letter with the information similar to what is asked above.
2) fax the medical release for Swedish imaging films records office: 206-320-5955 fax. Request that they send a copy of your MRI and CT scan on disk. Ask for two disks if possible. Always keep a copy for you... have a copy to send for second opinions.
3) call to confirm receipt of fax at Swedish imaging films records office: 206-320-3812 phone. I spoke with Amerlita. Ask for two disks, if possible. They said they will send it tomorrow, so there is a fast turn around. I received it within a week, for sure.
1) Did you have to get a referral because this is out of state medical care? I did. Colleen said she would write and mail my PCP a letter summarizing the care and test results. I asked to receive a copy of that letter. She sent it within a week, or three weeks after testing ended.
2) Email Colleen and ask her to mail you a copy of the letter she sent to your referring doctor for your file. Her email address is colleen.pacem@swedish.org
3) This helped me understand what was happening because they summarized all the testing data in one place/two pages.
1) You will be given a kit with your salivary cortisol tests. On the lab requisition sheet, be sure to put your fax number in the upper right corner. ONLY PUT YOUR FAX NUMBER. If you put your name (as the patient), they will not send it to you. Someone from this board did this, and she didn't get her results faxed.
2) The nurses at the Ambulatory Infusion Center (where you get your blood drawn during the day) will give you the lab orders for your two UFCs. I didn't do this, but I suggest you write: fax alternate report to: (your fax number). Do not put your name. Do not tell who it is for. I forgot to do this, and I didn't get a copy of these lab results.
If you need info about a shuttle service, there is one that will pick you up from the airport & take you over to the hospital. I believe its $23 one way. I found out that you can go to safeway.com & order groceries & they will deliver it to you there at the hospital. Your first order fee is free.
The first 3 days are rough when it comes to not being able to sleep, but it can also be fun especially if there are other cushies around. We hung out a lot.
Cherry Hill Inn is actually in Swedish on the 5th floor. It runs $60 a night and you can bring 1 person, they have 2 twin beds in the room, therefore you never have to leave. But you do have to call the Inn to make reservations for when Dr. L tells you to come test. This is not an automatic reservation when you get your test date. The number to Cherry Hill Inn is 1-206-320-2000. You will probably talk with Paul, he is a character.
1. For your urine collections: look at the toilet in the bathroom in your room, you will notice that there's a thing that looks kind like a shower head next to the main pipe bringing the water to the bowl. If you pull down on this so that it horizontal and flush you can use it to rinse out your hat after you go. That is what it is designed for. Once the water is done, push it back up.
2. Showers: there is commercial grade saranwrap in the cupboard over the sink in the room where the fridge and washer/drier are. You can use this to wrap your PICC arm in multiple layers to keep dry. It's a good idea to tape a washcloth/small towel over the dressing area before wrapping it with the saranwrap stuff.
There is a full size tub with a hand held shower head in furtherst corridor, other side of the "block" where the non-working elevators and touristy brochures are. This is the easiest place for you to shower and keep your PICC dry.
3. The food in the cafeteria is good and fairly reasonable. Stop down there and get the weeks menu. If you like ice cream do not miss out on the soft serve they have.
4. When you get a picc line placed ask the nurse to give you some hot packs. They will help with the discomfort you'll feel the first day. Don't let them be stingy, they only stay warm for about 20 min.
