kayjay Posted August 13, 2009 Report Share Posted August 13, 2009 We are leaving PA on Saturday to go the the Mayo clinic in Rochester. I have been sick for 11 years now but just got diagnosed in Philly in May after a long hospital stay because my heart rate and BP went up and stayed up. Anyway I have learned so much from all of you as I have been waiting for my trip to the POTS clinic. I wanted to say thank you. I won't have internet when I am being tested next week and I will miss learning from you... Any advice is welcome!! THANK YOU KayJay Quote Link to comment Share on other sites More sharing options...
Lizzegrl Posted August 13, 2009 Report Share Posted August 13, 2009 Good Luck!!!! I'll be anxious to hear how it all goes. Quote Link to comment Share on other sites More sharing options...
erik Posted August 13, 2009 Report Share Posted August 13, 2009 Travel safe and go get yourself healthy... we'll be pulling for you. Quote Link to comment Share on other sites More sharing options...
Renata Posted August 13, 2009 Report Share Posted August 13, 2009 Good luck, kayjay. Really hope they can help you. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 13, 2009 Report Share Posted August 13, 2009 I was just at the Mayo Clinic in Rochester this past March, and I really think you'll like it. Which doctor are you seeing? I saw Dr. Brent Goodman. Are you staying at one of the hotels that connect to the center? It's so convenient with all of the walkways. Also, the clinic has computers that anyone can use to keep in contact. It's just down the hall from the main info booth on the ground floor, and past the gift shop. Let us know how you're doing! Good luck.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 14, 2009 Author Report Share Posted August 14, 2009 Thank you all, You are such kind and lovely people!!!!POTS girl, I don't know who I am seeing yet (I know it's a team). I am having a 5 day work up. How long did you have to stay? Quote Link to comment Share on other sites More sharing options...
mjan Posted August 14, 2009 Report Share Posted August 14, 2009 Wishing you healing vibes.. and hugs. Here's hoping these docs are spiritually guided to help you figure things out.Dont give up..we're all here to help you through...warmly Jan Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 14, 2009 Report Share Posted August 14, 2009 I was there a total of 11 days. It's hard to plan how long you'll be at the clinic, because if they find certain things out in your testing, you may be scheduled to see a different doctor or go through more tests. It sounds like you have a set time span, though. It's hard to say if you might need to stay longer if they'd like to do additional testing. I figured I might as well stay and get everything done rather than have to go back another time. They really work with your schedule, though, and additional appointments are usually the next day or within a couple of days.Where are you staying?jana Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 14, 2009 Author Report Share Posted August 14, 2009 Jana, I am staying at the Marriot- across the street. I have never been there. Can you tell me if they told you that you would be there that long? My letter said that I would be there a min. of 5 days. Did you get a letter like that? My husband will be missing work and we have two elementary age children about to go back to school. If they want to keep me... I want to say b/c I am not in great shape and if is far away... but I thought maybe they will be done in 5? What do you think? Kari Quote Link to comment Share on other sites More sharing options...
janiedelite Posted August 14, 2009 Report Share Posted August 14, 2009 I was there this february but didn't stay at the marriot. We stayed at the hilton garden inn because it's connected by tunnels and it was winter. I don't have advice about the marriot. Like Potsgirl, I stayed 11 days. The autonomic tests took 3 days, then I had an appointment to review the data and he scheduled more tests. This was a friday after the autonomic tests were done, and we stayed the weekend doing more 24 hour urines (i did 5 in total... everyone carries pee jugs around there). Then we stayed the next monday through friday doing the remaining follow-up tests. I finished at 11:30 that friday with the last tests and couldn't schedule a follow-up with the neuro because he was going on vacation starting next monday for 3 weeks. So we camped out in their lobby and waited to see if he could squeeze us in that friday. We waited 6 hours, but he squeezed us in and went over all my tests one last time!Also, many times the tests were spread apart time-wise, but you can often go early to that department and they might have an opening. We did that many times, or else our stay would have been extended by a few days.There are wheelchairs at most hotels, and in the hospital lobby that you can use to and from the hospital. We even used them to go out to eat.I received a letter saying i'd be there 3 days for testing, but we planned on staying as long as the doctors wanted so we wouldn't have to come back. It sounds like you have someone with you which is great. I got quite sick while I was there from the travelling, sleep disruption, etc. and really needed my hubby's support to get to and from all the departments.Some of the tests I had done were at separate hospitals across town but many of the hotels have free shuttels.It was definitely worth the trip. I'm not cured, but the neurologist made sure I didn't have any conditions underlying my POTS and gave us useful suggestions for medication and lifestyle changes. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 14, 2009 Report Share Posted August 14, 2009 May blessing, kindness, good weather, caring people and understanding medical staff, follow you as you go on your journery to the Mayo and always!xxx'sBellaMia~ Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 14, 2009 Report Share Posted August 14, 2009 Kari,I had an appointment made with Dr. Scott, one of the ANS specialists, and when I got my letter from Mayo, it showed my appointment with him and a couple of tests he wanted me to do before seeing him. I saw him twice, and a cardiologist once, and then the tests. My letter didn't mention a time frame, but my mother used to go there, so I knew what to expect regarding length of stay. There really is no way to know for sure until you start taking tests and seeing doctors. You'll be in a great place, though. Let us know how things go. If you have more questions, you can PM me.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Jan Posted August 15, 2009 Report Share Posted August 15, 2009 I went one year the week before Xmas. Friday was Xmas eve. My last test and then the final consult were scheduled for Friday but with little kids at home with a friend I wanted to be home by Friday.They gave me this schedule of appointments that made me feel like I was in an airport either waiting for a flight, or running to catch one. When ever I had a few free hours, I went to the site of my last scheduled test, signed up for a cancellation and got in. I got my Friday test done and my Thursday afternoon tests done ahead of time, so I went to my primary doctor on Thursday afternoon, said I was done with tests and got to see him. I was able to leave after that. They had me fast before my first appointment in case I needed a fasting blood test. It turned out I wouldn't have had to fast but you don't know until after you see the doctor and he decides what tests to run. By the time I saw the doctor, and went to the lab, I was about to faint from fasting, and the lunch room was crowed. I almost started crying in the lunchroom line. I recommend bringing some food and drink along if they make you fast. I was not very happy with their follow up with my primary doctor back at home. I would recommend asking them very directly if they will work with your home doctor, and insist they do. Also, I was given a doctor in Internal Medicine who wouldn't refer me to the infamous Autonomic Clinic that specializes in POTS. He said he knew as much as they did. I would INSIST on going there if that isn't where you are going initially. He did NOT know as much as they did. I went back a year later to the Autonomic Clinic. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted August 15, 2009 Report Share Posted August 15, 2009 Sending you good wishes for many answers! Just be sure to take notes and certainly ask all your questions! Be sure to see the ANS doctors...the Neurologists. Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted August 19, 2009 Report Share Posted August 19, 2009 Folks,I'm gearing up for my Mayo trip in September...Do you have hotel recommendations? I'm also worried about eating restaurant food all day for up to two weeks...Do you all typically feel like crap when you're there from the traveling? I hope everything is going well, Kari! Keep us posted. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 19, 2009 Report Share Posted August 19, 2009 There are a couple of hotels that are directly linked to the main clinic that have kitchenettes (The Mariott was one, don't remember the other), and we went to the grocery store and bought most of our food. You have a full size fridge, an oven, microwave, dishwasher, it was great. We could eat when and how we felt like it. The cafeteria in the clinic is ok, and the food is reasonable. We ate there a few times, too. Saved a lot of money, also, since we were there 11 days.Good luck!Jana Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted August 23, 2009 Report Share Posted August 23, 2009 There are a couple of hotels that are directly linked to the main clinic that have kitchenettes (The Mariott was one, don't remember the other), and we went to the grocery store and bought most of our food. You have a full size fridge, an oven, microwave, dishwasher, it was great. We could eat when and how we felt like it. The cafeteria in the clinic is ok, and the food is reasonable. We ate there a few times, too. Saved a lot of money, also, since we were there 11 days.Good luck!JanaWow...was that expensive? Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 23, 2009 Author Report Share Posted August 23, 2009 Grey, we are home now and we stayed at the marriott at first. We then moved to the Double Tree where we had a nicer cleaner room and stayed on the "fancy floor" that has "free" food and drink, for much less ($100) than we spent at the Marriott. I would ask for a renovated room if possible... ours was brand spanking new. In general Rochester is a pretty clean small city and I would have been willing to stay cheeper but we did not know the area. Double Tree will give you a 10% discount as a patient and the pool etc. were nicer then the marriott. My husband really feels like we got "ripped off". I will add that I think there may be 2 Marriotts and we stayed in the one connected by underground walkways- not really important unless the weather is freezing. You can get to the Gonda and Mayo buildings (where you will be most of the time) never going outside because there is skyway access from the Double Tree. Are you flying? We drove and we took drinks and snacks with us. We also ate at a place called "Chesters" at least 5 times and I already miss it. If you eat lunch there you can get "dinner" items for lunch prices. Anyway I am home now so PM me with your questions. and tell me what dr's you are seeing and what tests you are having. The sweat test is not as bad as I thought it would be but it is the worst one you may have. They also let me skip the tilt table test b/c my heart rate increased enough during a 10 min tilt up. I am so happy for you b/c I have hope and a plan now and I think that you might come home feeling the same way! I think the salty resturant food really helped me feel better and we opted to drive so that I could lay down and drink as much as I wanted. KayJay Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 23, 2009 Report Share Posted August 23, 2009 I think we stayed at the Residence Inn, but I have brain fog this morning. We had initially moved into some 'suites' that were cheaper and connected to Mayo/Gonda, but they were not very nice and we moved. The Residence Inn was also connected. Yes, it was rather expensive, but they give you discounted rates depending on how many nights you'll be staying. We decided to spend a little more on the hotel and be comfortable, and less on eating out. I think it was around $140 a night with free parking. We had a very comfortable room with a closed-off bedroom, so I could nap and go to bed early while David watched tv or read. Hope this helps, and good luck at Mayo!Jana Quote Link to comment Share on other sites More sharing options...
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