Lessons Learned from Mayo Clinic: A Caregiver’s Perspective


Three generations of Mayo Clinic patients

Three generations of Mayo Clinic patients

I work in the Public Affairs Department at Mayo Clinic, and I’ll be writing about patient support tools and patient support groups at Mayo Clinic.

For my first post, I’m going to share a presentation from a longtime Mayo patient and caregiver. She found that her friends and neighbors all had the same questions about Mayo Clinic – so she put together a great presentation to empower patients and caregivers.

Lessons I Have Learned from Mayo Clinic

by Brenda McGuire

When the third generation of our family was being treated by Mayo Clinic staff, I realized that I knew things about coping with illness that my waiting room companions did not. Past experiences had forced me to learn lessons that made subsequent illnesses easier to bear. While negotiating the world of medicine can be intimidating, learning those lessons was empowering. There was no need to be passive any more–just polite. After all, those medical types needed patients as much as we needed them.

Lesson #1: You have to kiss a lot of frogs to find a handsome prince. It is the same with doctors, except for the kissing part.

One of our first trips to Mayo Clinic followed an exhaustive round of visits to various specialists in our city. We had seen more than 10 doctors who insinuated that the ailment was imagined, before we insisted on a referral to Mayo Clinic. We were eventually directed to a really special specialist. Diplomas and honorary degrees from all over the world covered the walls of his modest office. I have no clue how to pronounce his specialty, but he had the answer. The ailment was a side effect of a discontinued medication that had damaged nerves. The medication had to be reinstated for life to avoid further symptoms. It was, and for 20 years there have been no further problems.

Lesson #2: Not all doctors graduate at the top of their medical school class. Neither do their colleagues. All medical tests are not equal. Neither are diagnoses.

This lesson is like learning the truth about Santa Claus. Our first family member to visit Mayo Clinic had suffered a back injury that hindered walking. For several months various tests and examinations had been conducted at the three hospitals and various clinics in our city, including one in a dirty office with vice grips on the windowsill. The condition worsened. Hmmmmm.

Staff at Mayo Clinic discovered that muscles had atrophied during the medical dithering at home, but that a full recovery was possible with physical therapy. It was. The whole Clinic was clean, too.

We brought the patient home just before I was to begin teaching in the fall. In the flurry of activity I fell and sprained both ankles. The local ER charged more for that one x-ray than the charge for a full body x-ray at Mayo Clinic. That fact made teaching on crutches for three weeks easier to bear. Almost.

Lesson #3: There is a reason you are sick. Failure to find it is not the patient’s fault, so stop feeling guilty.

If you have never been to Mayo Clinic it is either because you are healthy or because you think it will be too expensive. Mayo Clinic is not for simple ailments that can easily be addressed at home. It is for patients who have failed to find relief or definitive diagnoses and treatments after reasonable attempts. Surprisingly, the cost is a national model for healthcare reform, because staff is salaried and profits are put back into research and improved treatments. It is a well-oiled machine that puts patients first.

Lots of people come to believe that they will just have to “live” with an ailment or that they are imagining symptoms. The Clinic model begins with an information gathering appointment that gives ample time for collecting information that others might have missed in the past. Even the most trivial fact might tip off the doctor to a correct diagnosis. Be specific.

Lesson #4: Resumes are not just for job-hunters. Pocket notebooks are not just for reporters.

“So, what brings you here today?” It is a question every patient dreads. Where to begin?

A one-page patient resume is the answer. Most doctors do not have the time to sift through fat files prior to seeing the patient. The first time we brought a condensed version of the patient’s medical history to our intake Mayo Clinic interview, the doctor gushed over it and got to the gist of the problem quickly. Now we carry updated copies in our wallets. You’d be surprised at how it expedites emergency room visits, too.

The patient resume is a one page document I created for family members. At the top is the patient’s name and address, Mayo Clinic number, insurance information, doctors’ and pharmacy names/phone/fax numbers, medicines and dosages, dates of hospital visits, diagnosis, results, and current complaints. 

Carry a pocket notebook to record dates, complaints, questions and treatments each time the patient sees a doctor. Put the patient’s name and the year on the outside. On the inside cover put name, address and doctor information. The first page can have current medications. Subsequent pages are for appointments. Date and include the doctor’s name for each visit. List complaints and questions prior to the appointment, so that you can maintain focus when the doctor is there. Don’t forget to record the doctor’s instructions. Refer to previous notes if you need to. You might avoid repeating failed treatments. We did.

Making notes is invaluable for updating your patient resume, too. It works like a charm—especially when your mind turns to mush from the stress of it all.

Lesson #5: If more than two specialists are recommended for the original ailment, go to Mayo Clinic. You are a patient, not a juggler.

Seeking relief for stubborn symptoms can become an endless chain of tests and office visits delayed by schedules, tardy lab reports, and consultations. For some reason, doctors on the “outside” have difficulty chatting by phone in a timely fashion. Mistakes can be made, not maliciously, but they happen. Sometimes the delay can be fatal.

Complicated and rare conditions are seen more frequently at Mayo Clinic. Clinic networks allow instant access to patient records and consultations are immediate. With a few keystrokes in his office, a doctor can show patients an actual CT scan and more. We’ve found the average diagnostic time to be 7-10 days. Pretty cool.

Lesson #6: Recovered? Pass it on!

Relief at a correct diagnosis, regardless of the outcome, is almost tangible. The Mayo Clinic’s reputation for thorough diagnostic evaluation and cutting edge medical treatments gives patients the confidence to resume their lives knowing that they have received the best care in the world. Eventually they will encounter someone who is stuck in the endless cycle they have just escaped.

My advice? Don’t be shy! Share what you know about your experience at Mayo Clinic. It could save a life.

We’d like your feedback on Brenda’s observations.  Do you have suggestions for patients and caretakers? Please leave your comments below.

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20 Responses to “Lessons Learned from Mayo Clinic: A Caregiver’s Perspective”

  1. Alex B. Says:

    I took my wife to Mayo twice for issues that went undiagnosed at home and Mayo failed to address them, putting my wife through lots of anxiety and pain. The specialists seemed irritated and couldn’t answer any of the questions, answering with ‘why do you worry so much?’. They were unaware of why she was even there, having not read the notes prior to her appointments. They agreed she had all the ailments/diseases she reported, but could not explain any of them or find a central cause or treat any of her conditions, simply confirmed them and didn’t try to find any main cause for them. Abnormal diagnostics went unaddressed and unreported to us until we got a copy of them back at home, again–no follow-up, told ‘nothing to worry about’. She ended up having a traumatic surgery and a cancer that Mayo missed. Some things went very wrong and were reported to PA who did nothing to help.She has had no follow-up at all or anyone contacting her doctors.We know other people who have had the same problem. Our cousin’s wife died from cancer that Mayo missed, they told her she had fibromyalgia. Another has ended up with thyroid cancer Mayo missed. We were very unimpressed with the system and the way it works. It was hard for my wife to do all the rushing and running around for appointments–in fact it’s hard to watch all of those who are sick, trying to figure out where they are going and sitting and waiting long times in those uncomfortable chairs. It would be better if people wrote complaints to administration or the medical board rather than Patient Affairs.

  2. nancy Says:

    Good luck and make sure you get copies of ALL your test results, all procedures, and medications. I recommend keeping detailed information by day in a spreadsheet. Also, you will have to do much of the coordination of appointments and information sharing across specialties yourself. (Mayo is very disjointed, despite their reputation). Great diagnosticians and testing–lousy collaboration and on-going care management. And be prepared for lots of “scheduling changes”. Hope you have caregiver support..

  3. Ali Says:

    Thank you so much for this article! I have an appointment at the Mayo Clinic this coming Thursday, Jan. 13th. This will be my first trip to Mayo. I have been sick for almost a full year. I completely identified with the story of doctors that tell you it’s pretty much in your head and the eventual feelings of self-doubt you begin to feel. I was comforted to read this and now feel more hope for finding a diagnosis. The patient resume is a wonderful idea and I will put one together before I go. Thanks again for helping to uplift a first-time Mayo patient!

  4. nancy Says:

    I think Brenda’s last post says it all–there is really no collaborative care at Mayo. The reputation is a myth. The internal communication has huge gaps and even with intense follow up by the patient and caregiver, the missteps can be fatal as in my husband’s case. Having had experiences with other health care providers, we had a basis of comparison–and Mayo’s standards are not at the top. We are now evaluating options (legal and other) to ensure that Mayo addresses these issues with the same vigor that they put toward PR and fundraising. One additional piece of insight for others–the Office of Patient Affairs is not empowered and not staffed well. I recommend communicating with the CEO’s office.

  5. Brenda Says:

    I have not checked this site for awhile due to caregiving duties of my own, and am sorry to hear of the troubles some of you have had. Although our situation is not perfect, we have found a few additional strategies that have worked for us that are not included in the article above. Maybe they will help.
    1. For a complete “work up” at the Clinic, do not make an appointment for only one specialty. Your family doctor might do this, but it limits you. Instead, go to the Admission/administration office at Gonda and ask to see a triage nurse. That person will take a history and determine what happens next. If your situation warrants, a doctor will be assigned to you who will direct your appointments across the disciplines. You may have to wait a few days until a doctor can be assigned, but it is faster than waiting for a standard appointment. The first doctor will follow up at the end of your visit and share test results unless your situation is best handled by another specialist.
    2. Use the checker system to avoid an extra visit. If you are unaware of this system, it is just a matter of going to the desk where your future appointment is scheduled and waiting for a cancellation. Sometimes it doesn’t work, but often it does, and can save time and money. Clinic brochures explain the system in full.
    3. Follow up at Mayo Clinic is a challenge given patient volume. You must be a “squeaky wheel” and initiate the follow up if it is not timely. Call back until you are satisfied, and don’t stop with the receptionist. Ask for a nurse.
    4. Although we have had excellent care at Mayo Clinic, we have learned that we are in the best position to monitor care. I think we hit every department except maternity with my husband last year, and some were better managed than others. However, we navigated them all successfully with our trusty notebook and patient resume.

    My advice? Stay focused, learn about your condition, and be a partner, not a follower. The ultimate responsibility for care belongs to the patient. Trust your instincts.

  6. nancy Says:

    These recent examples underline for me the process and coordination issues that seem to plague Mayo. Despite the skilled medical staff, the coordination is more than disappointing and in my late husband’s case–deadly. A pre-surgical test not scheduled in a timely manner which led to the postponement of a needed surgery by a month. He was admitted to the Mayo ER four days after the original surgical date, and died the following day in the critical care unit. Two months later, I still do not have a death certificate that accurately reflects what we were told his conditions were (after months of Mayo treatment)–and despite an autopsy. I have just been told that a pathologist is now going to “review” the matter and re-issue a death certificate. At this point, I am considering engaging some legal help, as it appears to me that something is not on the up and up. Any thoughts from others?

    • Sue C Says:

      I would engage legal help, if that’s what your intutition is telling you. As you can see from the other posts here, the Mayo Clinic is not all it’s cracked up to be. And the “Patient Affairs” reps seem to function more as “Public Relations” reps; they’re all about advertising the positive things, but not much help when it comes to investigating/repairing the negative.

  7. Sue C Says:

    I just had to stop back here and finish my sad story…After finally talking with Shannon in “Patient Affairs”, she assured me they would look into my concerns and call me back. Not only that, but she gave me a specific date when they would call back. Well, guess what? No call. It’s four days past the date she promised. I sent an email and got no response to that either. I actually had sent a few different emails and never received a written reply. I guess they don’t want to have anything on record, except all the accolades. And while those may be well-deserved, I truly regret ever having gone to Mayo.

    One last thing…I was very angry that my doctor hadn’t looked into my 20+ pound weight loss, saying again “I’m a neurologist…” therefore she only looks at one thing despite the Mayo’s famous “coordination of care”. So after I flew back out from Denver for my “results” appointment and expressed my displeasure, she decided to get a chest x-ray (which should have been done during my actual testing visit). So I’m at the Minneapolis airport and she calls because there are growths on my lung and THEN wants me to come back to see a pulminologist. We were ready now to board our flight. She didn’t contact my home doctor for an additional 7 business days so he could follow up. Very very bad patinet care, in my humble opinion.

    • AJ Says:

      I will have to agree with your humble opinion. Just returned from St. Marys which uses Mayo Clinic Doctors hoping to get the best care for what I believe is PTSD. Presentations, videos and classes is the main treatment. No group therapy, no therapist to help you stabalize. Just very nice nurses who really do try to help, but don’t go on reputation alone. I am back to working with local doctor, as I am feeling worse then before I went.

  8. Sue C Says:

    It appears that this site is no longer monitored, but I’ll leave my comment anyway. I called Patient Affairs today and got a recording; I have not received a return call.

    I travelled all the way to Rochester from Denver and feel that it was a big waste of time and money. I saw a neurologist there–Dr. Tracey–and had 4 days of testing. My return visit wasn’t scheduled until 2 weeks later, so I had to fly out twice.

    Before I left, prior to my return visit, I left Dr. T a list of my questions and concerns. When I returned, she hadn’t even looked at my list, and tried to cover for herself by telling me that I wasn’t going to receive satisfactory answers to my questions anyway. She said this because I had been crying, (after I had been waiting an hour past my appointment time to see her. The staff told me she was late because she was busy dictating).

    Finally, her secretary found my list. Dr Tracey went down the list and told me, “I can’t answer that; I’m a neurologist” to about half the questions. I thought the whole point of Mayo was coordinating between different specialties to give a whole-person perspective to the problem.

    This was probably the most disappointing experience of my life. But to make it worse, she called as we were leaving town; we were already on the plane so I missed the call. She indicated that something had been found on my chest x-ray and that I need to see a pulmonary doc. I called her back this morning and after 4 hours had not received a return call. So I phoned back and told them I didn’t care if she was seeing patients all day, I needed to know what the problem with my chest x-ray was. I told them that anyone could give me the information; I didn’t need to speak with her. So then, all of a sudden she wasn’t seeing patients and came on the phone.

    My Mayo experience was completely uncoordinated and I received no indication that the doctor cared about my concerns at all. Rather than telling me “that’s not my area”, she should have referred me–or at least passed on the information–to the doctor whose “area” it was. I was treated rudely to boot. None of the questions I sought treatment for were answered. There was absolutely no coordination of care whatsoever.

    I am sorry that I ever went to Mayo. When I initially tried to make an appointment myself, no one returned my call. When my doctor called, I received an appointment call within one week. I guess that’s just another indication that the patient is not the primary concern, as this organizations likes to espouse.

    • Catherine Benson Says:

      Dear Sue –
      We are sorry to hear that you had such a disappointing visit. I forwarded your post to our Patient Affairs Office and I understand that they have contacted you. Thank you for writing to bring this to our attention. Catherine Benson, Mayo Clinic

  9. David W Says:

    Our experience has been an absolute dissappointment, to be specific, it is with the oncologist and the PA. We have had no problem with scheduling system, and the nursing staff have been wonderful.

    we live in Flagstaff, AZ, and my wife was diagnosed with stage 3 breast cancer, triple negative. Pathology report indicated that this is a very aggressive form of cancer.

    Original diagnosis was made up at Flagstaff medical center; during the biopsy procedure, the surgeon performed lumpectomy instead, with full of confidence that it is only fibroadenoma, which of course, really had to be confirmed by pathology review. Because of this error, my wife did not have any confidence to continue at FMC, and sought care from MAYO Clinic Arizona.

    After review with surgeon at MAYO, another lumpectomy was performed, and lymph node were removed due to lymph node involvement. Unfortunately, we didn’t meet the margin guideline, so mastectomy was recommended. Because of surgery schedule (3 weeks out before she can have the surgery), we asked the surgeon, and consulted with oncologist, to see if she can be on chemo treatment first, then have the surgery, and then radiation. It was OK’d by everyone.

    When we consulted with the oncologist to verify the chemo regimen, my wife asked would it be a good idea to get a PET and bone scan done, oncologist thought that would be a good idea, so it was performed in March of 09.

    Because of everything going on, we didn’t ask for a copy of the PET and bone scan results, but we did receive word from ONC that it was fine.

    during Chemo treatment, we didn’t visit the ONC any more, instead, all follow up was through a PA (which I believe is normal practice), not the most personable person in the world. Towards the end of the chemo treatment, my wife did see the ONC again (in July). This time, my wife asked for a copy of PET and bone scan results, and was alarmed that there was an entry in the PET scan regarding some anomoly in her liver, and suggested follow up scan as clinically needed. She talked to the ONC, and was assured with “that’s something that the radiologist will put in the report to cover all basis”. With the assurance from a medical professional, we proceed with mastectomy, and completed her radiation treatment in November, all completed at MAYO to ensure all care are at MAYO’s standard.

    In January of 2010, she started to feel pain in her abdomen, we were lucky in that we can get an appointment so quick, so on Thursday we went down to Scottsdale for a check up. We didn’t feel lucky with the results. Liver enzymes (Alkp, ALT, AST) were extremely elevated, bili was still in normal range. A CT scan was ordered for Friday, and found that there are enumerable lesions found in her liver, and there are multiple bone involvement also. however, our ONC was not in town, but nurse practitioner assured us that we will get a call from him this weekend, we didn’t hear from him until next Monday, so all sorts of things went through our minds for the entire weekend.

    After finally squared away with visit with the ONC, a new regimen was setup (Ixempra), dose adjusted due to high liver enzyme, treatment every 3 weeks. Standing orders were setup for weekly lab work done (in Flagstaff), order to be sent to ONC’s office. During our visit with our ONC, we asked about the findings in the March 09’s PET scan, he said “I didn’t want to follow up at that point, because it was at the beginning of her chemo treatment, and I didn’t want her to be discouraged”. Strange statement – but why he didn’t follow up with another scan, I don’t know.

    First treatment was rough, between first and second dose, she felt some additional pain, so we called ONC’s office, we were told to go to ER in Flagstaff. We went to the ER, CT scan were performed to see if there are clots in her lungs, all clear, but there are some fluids in one of her lungs (right). ER physician was able to consult with our ONC, and then she was released.

    My wife started to complain about pain, abdomen, and shooting pain to her shoulder. called our family doctor, and pain medication was presribed.

    for her lab results, first and second week after chemo, the liver enzyme started to drop. however, on the third week, the liver enzyme were going up.

    for her second chemo, the visit with PA, I pointed out that the liver enzyme were going up, but they said they go with overall picture, no problem. during the visit, Morphine and Oxycodone were prescribed to help to manage her pain (her belly is starting to swell). ONC stopped by during her chemo treatment, and said he will order a PET scan around her third chemo treatment.

    a few days after 2nd chemo, her belly is getting larger, and she is having problem breathing. Called ONC’s office, was told to go to ER in Flagstaff. O2 sat at 82, CT scan revealed no clots in her lungs, some fluid build up, ER doctor decided it is best to admit my wife that night. Next day, the hospitalist doc contacted her ONC, and more tests were ordered. additional CT, HIDA scan, X-Ray, lab work, and put on IV. Stayed in FMC for 4 days, and all discharge reports forwarded to ONC at MAYO.

    during the week of her third chemo, we followed up with her family doctor (post discharge visit), her doctor didn’t like the lab results, the bili started to go up (from 1.2 at discharge to 2.8). she ordered additional lab tests (added lipase) for following day (wednesday), and her bili went up to 3.1, unfortunately, lipase test was still pending.

    On Thursday, on our way down to MAYO for PET Scan and Chemo (scheduled for Friday), we received 3 calls, 1 from nurse from family doctor, informed us there will be schedule change at MAYO (more lab work, and doctor’s visit along with PET scan). 1 call from her family doctor, told us that the lipase result is very high, she’s concerned, and another call from MAYO scheduling, notify us of the same schedule change. We found out our ONC is on vacation, so another ONC at MAYO was consulted, and they are talking about admitting my wife for further studies.
    before our visit with MAYO, I went to our local hospital, and requested the discharge report, and DVD’s of all the scans that was done there, so we can take them down to MAYO for reference.

    Lab and PET scan done, we went to our appointment, it was’t an ONC doc, but the PA. Bili at this time is 4.6. First words out of her mouth was “why didn’t you go to ER?”, if we’re told to go to ER, we would have.

    During the visit with PA, she reviewed the lab results from that day, and said that the WBC shouldn’t be this high, I questioned that the lab standing orders were sent to ONC’s office, why didn’t anyone bring this up, since the WBC results have been high, no response. I asked about what happened to all the notes from her last hospital, she looked on her record, and no notation from the ONC, regarding any conversation with doctor’s at FMC. Good thing this was noted in her discharge report from FMC conversation took place with discharge physician and her ONC, we have a major sense of disconnect here. We don’t know why no one at MAYO raised an alarm with all the work to rule out obstruction from FMC.

    from PA, we went to ER, we got to a room after 2 hours (they were busy). CT, XRay was done, came back normal, but fluid in her lung was again noted. The recommendation was made to admit her for observation and additional tests will be done. Admitting physician came in, and her discharge report was copied for her chart.

    Next day (Friday), more lab work, bili is still going up (5.1), admitting doc visited us, informed us that GI and ONC (on-call) will visit us. NPO until GI doc has a chance to visit my wife. Her last meal was in ER, which was around 11:00 PM Thursday. GI resident came in, I gave her the discharge report, copied were made. We didn’t see the main GI doc until 2:00 PM Friday, and they decided they don’t need any tests done. Finally, got some food in her. More x-ray was done, and a HIDA scan was ordered, we asked if they know about the HIDA scan that was in the discharge report I brought along, they didn’t know about it, so more copied were made of discharge report, and HIDA scan was cancelled. A thoracentesis was done to remove fluid from her lung.
    At 4:50 PM, nurse practitioner came in from ONC dept came in, and informed us that we won’t be able to see the on-call ONC untili Saturday, but she promised us that the on-call ONC will consult with our regular ONC.
    Saturday morning, admitting docs came in and told us that they would like to transfuse 2 units of blood for my wife, so that she will feel better up in Flagstaff (are they ready to discharge her?). I asked who made the request, they said that the ONC did. I asked to hold off on the blood until we get a chance to speak with the ONC. GI doc came in, informed us that nothing is obstructed at this time, it is likely the cancer in her liver is causing a lot of problem at this time, therefore the elevation of liver enzyme, and bilirubin. we will have to wait for ONC to see what can be done.

    while we were waiting for the ONC, another doctor that we have not seen came in, said my wife should be discharged, and nothing can be done until we see our regular ONC. I asked what happened to the on-call ONC, she said he will not come. At this point, we just lost our cool. What the heck is going on? So when the something happens to a patient, if the regular physician is not available, just sit and wait until he’s back from his vacation? Is this the typical covering procedure for MAYO? I know we can’t get chemo done on a weekend, but can’t even hear from an ONC as to if there’s hope or not is absolutely unacceptable. we already experienced this back in January, when we found out that her BC has metastasized, we waited for 3 days while our ONC was running a marathon, now we are at this stage, we still have to wait?
    The good thing was that this doc was wrong, at least the on-call ONC finally showed up, and he went over her history (I don’t think he talked to our regular ONC). He looked at the PET scan report from March of 09 (baseline), and said “If she was my patient, I would’ve ordered a follow up scan to check on the questionable mention specific to her liver, due to the aggressive type of her cancer”. I was surprised at his candidness, but am now just dumbfounded with this information.

    Since we have lost our faith with our ONC, we will transfer my wife to Florida, and seek help (I HOPE ITS NOT TOO LATE!!!) at Moffitt, and be closer to her family…

    I hope there’s a review board at MAYO for the conduct of our ONC and PA. People’s lives are at their hands, and I can’t believe that there is this level of disconnect within the same organization, specifically, within the same doc. We put our trust in a world class organization, we followed the regimen, but it’s been a total disappointment. The lack of communication has made us feel like our ONC has already written us off a long time ago.

    I don’t know if my comment will be published, but I know you have my email address. I’d like to speak with someone at length about our experience.

    I know there are many successful stories at MAYO, but our experience has been less than satisfactory, to say at least.

  10. nancy s Says:

    My husband has been under the care of Mayo for the past six weeks–but we have been dealing with his relatively rare form of cancer ( and now a fungal lung infection as a by-product of a cancer therapy) for the past 2.5 years. He has been a patient at Maine Medical Center, Dana Farber Cancer Institute and Seattle Cancer Care Alliance so we have a broad experience with a number of approaches and practicioners. And we keep excellent comprehensive record summaries as suggested above. While the doctors and nurses we have worked with at Mayo have been excellent–the coordination across specialties and between the clinic and the hospital has been extremely poor–and much inferior to that of SCCA and Maine Med. We are finding that the Mayo myth of coordinated care is just that. I won’t share all the examples–as I am documenting them for a visit with patient affairs–but one should be enough. When my husband was recently hospitalized, we spent 12 hours in the ER until a bed was ready. During that time, because tests were planned, he was on saline. The test was delayed and although he was eating and drinking normally, the saline continued. We asked why and were told he would be on saline until he left. He then began to have serious respiratory distress as well as increased edema–finally after over 48 hours the unnecessary hydration was stopped. He came in to the hospital without any need for oxygen–and is now on it 24/7. When we came to Mayo, we were seeing an oncologist and and infectious disease doctors; now a pulmonologist and cardiac doctor are in the mix– and I am the one calling each doctors office with updates and a request to look at the most recent tests/conditions–and was encouraged to do so my the nurses in the offices. Again, good docs–really poor coordination.

  11. T.H. Says:

    Back home, I was going from doctor to doctor with no answers and a lot of time wasted. My family doctor decided it was time to refer me on to the Mayo Clinic for answers. We spent 2 weeks in Rochester, MN. Again it was going from doctor to doctor but the appointments were consolidated into a short time frame which made more efficient. I brought more medical records including xrays and my main Mayo doctor didn’t want them. He had received a packet from my family doctor back home so that was all he wanted to look at. I had brought more information in addition to that but he wasn’t interested. I was very impressed with the facility, but in the end I came back with more frustration. I had the expectation that they would find what was causing my illness. Instead, I was informed by my main Mayo doctor that I came with wrong expectations. They were able to rule out what it wasn’t, but could not tell me what it was. I went to numerous doctors, some I question as to why they sent me there. When I questioned my main doctor, he was almost annoyed that I would even question him. The one specialist he really wanted me to see I couldn’t even get into see him. I live 1,325 miles from the Mayo Clinic in Rochester. So having appointments out for 2 months isn’t financially feasible, nor is it feasible to come back multiple times for appointments. I had to make the most of my time while I was there. So back home I go trying to find a doctor that can figure me out without thinking I’m just complaining. The symptoms are still there and getting worse. When my main Mayo doctor saw that I was upset about them not finding the cause to my illness, his reply was “don’t be upset, just start living life.” Unless I have an extreme flare up, I do live life every day even when I don’t feel good at all. But one day I would like to feel great while doing it.

  12. Ann A. Says:

    My ten day stay was extremely thorough, however, my followup with the plans and recommendations was very poor. I got a diagnosis on the 11th business day. I was asked to call the specialist for that and I did. She had a sketchy plan at best and said she would forward the details of the plans, scripts and recommendations. Two weeks later and I’ve received nothing. I was informed today that she contacted my local specialist…also a bit sketchy. When I called Mayo, they said the info was being typed as we spoke….yeah….right. I am oh so dissappointed. My local is trying to arrange care for me. Who can I contact about this experience? Don’t get me wrong, I’ve never experienced the level of diagnostics and kindness of the technicians that I had there. My problem is with the reponsiveness. I beleve I’m a classic case of “falling between the cracks.”

    • Barb Sorensen Says:

      Ann –
      We are sorry to hear that the follow up after your appointment was disappointing. Thank you for writing and bringing this to our attention. Your comment has been shared with our Patient Affairs department and someone from that office will contact you directly. If you have any questions for Patient Affairs, we invite you to call (507) 284-4988. Thank you. Barb Sorensen, Mayo Clinic

  13. Eric Lanford Says:

    I am trying to get in touch with Cartherine for a possible CNN.com story on one of your stories…
    Pleas email your contact, if you can

    • Brenda McGuire Says:


      Were you trying to contact Public Affairs at the Clinic or the author of this article?

      Brenda McGuire

  14. Liz Uraga Says:

    I especially like #3. I can remember in my own illness a few years ago that I kept apologizing to my doctor who was unable to diagnose why his surgery had failed. Truly, I felt like I failed him. The power relationship between patients and doctors is so unequal that as a patient, I felt that my illness annoyed my doctor. It’s important then to remember #1 and be polite but not afraid.

  15. H. J. HARWICK II Says:


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