Back from the Mayo Trek--- this is really long report (sorry)

[Guest guest]

Hello, everyone....Hi, Sunshine, Ronnie, Lu, , Carolyn, Ward

(thank you for all your encouragement to make this Mayo Trek)!

I've been back from Mayo for 4 days now, and am still suffering from the

jet lag. I am also still trying to decifer my 4-day experience at Mayo.

This is such a huge facility, and can be quite overwhelming:

According to their 2000 stats, Here's a typical day at Mayo Clinic:

New patients (outpatients) arriving: 1,023

Admissions to the hospital 151

Surgical procedurew 189

Lab tests 29, 961

Blood tests 13,316

Radiology procedures 3,477

CT scans 402

Chest X-rays 776

MRIs 173

Electrocariograms 600

Units of blood and blood components used 251

The numbers are really quite astounding, especially how they run everyone

through this health care system Monday through Friday.....

Originally, I had planned to get several consults, first at Mayo, then

UC-San Diego, and then the Arthritis Center of Riverside. I was also

thinking about Dr. Buckner, but, wasn't too sure about their pulmonary

staffs' familiarity with RP. However, this was not possible financially

nor realistic due to my husband's limited vacation leave and with his

father in the hospital for pneumonia. So, a quick 4-day trip was planned

to Mayo....

My husband describes it as an " educational vacation " as we spent many

hours in the patient education center, cancer education center (brought

back at least 10 pounds of literature of various diseases for friends and

family back home), attending various free health seminars, and walking

tours (art, history).....there is so much history affiliated with this

clinic.

I decided on Mayo because it seems from the various conversations of the

RP members over the past 2 years that Mayo has treated the largest number

of RPers at this time. If you look at Dr. Herman's RP Up-To-Date, he

refers to published RP articles which includes many Mayo docs.

It just seemed to be a very comprehensive medical clinic, with a solid

reputation.

It probably made a difference that I already had a diagnose of RP (almost

10 years ago). My docs needed further information on medication

management as I have been refractory to 7 different DMARDS, and have been

on prednisone continously for the past 10 years. Nothing seems to be

working. Also, my trachea is collapsing, affecting my breathing.

I was told by the mayo docs that they really appreciated my reference

letters. I had also organized my tests results with cover sheets for my

various lab tests, pulmonary function test, MRI, CT, echocardiogram,

sleep study etc. etc. etc. I also brought up chest xrays and CT scans

of my trachea.

This probably expedited my stay at Mayo. The mayo docs told me that

patients will come to them with stacks of papers and progress notes that

they have to decipher, and try to figure out what the referring doctor is

asking of them. This can be frustrating....and it takes additional

time!

So, Sunshine, when you see Dr. Michet, be sure to bring a referral letter

from your doc :

1) summarizing his findings/treatment

2) asking Dr. Michet specific questions re: RP dx

Because my pulmonologist asked specific questions, Dr. Brutinel did

further CT scans and said that due to my tracheal malacia, a stent is not

recommended because they don't make stents long enough to cover my entire

trachea. The right bronchus intermedius is constricted, but, stenting

is also not recommended at this time since I have been stable for the

past 2 years, and, I am somewhat functional. Dr. Bruntinel said that if

my husband had to push me around in a wheelchair, maybe they might

suggest the bronchal stent.

I have to admit that I was disappointed because Dr. Utz and Dr. Staats,

the two pulmonologist who specialize in RP were not available. Although

Dr. Brutinel was nice, I would have liked to have someone who was

familiar with RP to help give me some kind of comparision in terms of

RP affecting the lungs.

The morning (3 a.m.) of my first appointment with Dr. Michet, my heart

was racing continuously, pulse over 100, BP 162/92...and a pulse over

100....I thot I was just being anxious. However, the following day, when

my heart continued to race, Dr. Brutinel ordered some thyroid sensitive

blood tests and found that my levels were elevated. Dr. Michet said that

it might be either acute hyperthroidism or graves's disease. He

prescribed a beta-blocker for me, 50 mg of Atenolol to help in the

meantime, and, I need to follow up with an endocrinologist. What a great

coincidence to find out that i have a thyroid problems that perhaps might

be affecting my overall condition.

from KC gave me some really good advice, too....she said that if

your appointments are too far apart, you can go and see a patient

representative (located on each floor), and ask them if they could check

for other time slots....with the huge volume of people and cancellations.

I learned that the summer is the worse time to visit Mayo because it is

especially busy (warmer traveling weather) and many staff go on

vacation. Perhaps your appt., at the end of summer, might not be too

bad. To give you an example, on Wednesday, the doc wanted to schedule

me for a CT scan but they were backed up and initially told him that due

to the staff on vaction, they only had openings the FOLLOWING

week...then his appointment secretary finagled and found me a late Friday

afternoon (still not good enough because I was leaving the first thing

Saturday morning), and I wouldn't be able to discuss the results with the

docs.

Well, the next day I went down at 6:30 a.m. to sign up on an early

waiting list. I was the LAST person on the list and even made my own

space.

(# 16). They give out these pagers to the first four people on the

list, and tell them that if there are any cancellations, they would be

paged, and should report to the CT floor within 10 minutes.

Being the last person on the list, I was told that the CT schedule is

full and I would not be seen for a CT scan on Thursday.... However, the

lady (#15 on the list) in front of me was told to come back and check

after 12 to see if anyone returned their pagers and they could move up on

the waiting list. I don't know why I was told to not come back, but the

lady in front of me was given an option.

So, I went and took 's advice, and went to see the patient rep...

that patient rep did some calling, and got me an earlier appointment on

Friday (7:45 a.m.) due to a cancellation. That was a bit better. But,

I still wanted a Thursday CT scan so that the docs wouldn't have to rush

so much to interpret the results before I left.

What happened is that i went back after lunch and inquired if anyone

returned their pagers. The same receptionist (poor thing, did look

tired) informed me that there were several people who signed up in front

of me and that she would have to check. I told her, " okay, I'll just

wait here. " and sat down on a comfy sofa. She called out several names

and when no one responded, she called me name and gave me a pager, adding

that I probably won't been seen as they were so busy.

Well, at 2 p.m. I got a page! When I returned to the area, the

receptionist surprisingly exclaimed, " they paged you? " YES, persistance

does pay!

So, Sunshine, don't take NO for an answer! So much traffic occurs at

Mayo, and appointments get rescheduled all the time! You don't want to

stay at Mayo any longer than necessary (hotel bills do add up). If anyone

gives you the run around, just see a patient representative.

Sunshine, when you see Dr. Michet, please tell him that from Hawaii

said ALOHA....you'll like Dr. Michet. Other members of the group have

expressed that Dr. Michet is much more personable than Dr. Luthra, who is

the head of the rheumatology department at Mayo.

Best wishes for your Mayo experience! There was so much to do and see at

Rochester. I wish we could have stayed longer and played a bit more! I

found out too late that the Mall of America is only an hour+ drive away!

Shucks!

Aloha,

P.S. If you like Italian Cuisine, 's on 2nd street southwest

is really tasty ( & within walking distance of the clinic)