Almost a half-year wait for an appointment.

@pblenoar - Were you given a reason for the long wait? Would it have been better if you had a referral or was a pre approval from insurance holding things up? I would certainly ask because your experience is the complete opposite of my experience. If you can't wait for your appointment I would look for a teaching hospital that is close to where you live. Teaching hospitals usually are familiar with a wide range of ailments and have a large staff. I don't know where you live or what your situation is so it is hard to be more specific than that. The internet could also be a source of information for hospitals that treat what you need help with. Best of luck!

Lynn

I had two thoughts after reading all of your posts, which are nearly identical to my own, including the exhaustive testing. I replied on a different thread and provided a very similar history. While our root causes may have been different, we are now in a similar place.
These are not simply recommendations, but things I am also considering.
1. Trigger foods: I re-read your post multiple times and now I am reflecting on your mention of carbohydrates causing massive problems with your breath and junk food reducing your bloating. You appear to be very cautious of alternative approaches, but there is one that is scientific and precise:
The elimination diet. It would require a lot time and energy, as well as a partner (who is actually willing to smell your breath).
Start with bone broth (or a neutral food)-no dairy, no carbs (especially no gluten).
Day 1: How is my breath?
Day 2: Same question
Day 3: Add rice and non-glutenous grains. Then monitor it.
Day4: Repeat
Day 5: Add gluten
And on and on until you get to meat.
***Take VSL while on this diet. It is well researched and carried by most pharmacies.
Ultimately, you need to find a way to starve this colony of bacteria.

2. Apple Cider Vinegar
People have had really good results with ACV and I don't see it being a solution to the breath but may help with digestion. ACV helps create the right PH for digestion, including support for low acid production. I wonder if the junk food simply helped speed up the digestive process, thus you felt less bloated but it did little for the breath. ACV should also help with this.

I would be OK with a long wait if I could get an appointment at all! They have turned me down twice—supposedly because I can get adequate care in my local area but also because I am on Medicare, which they don’t mention in the denial letters. Anyway, if you research other resources, start by looking up online the US News and Workd Report study of Best Hospitals. Of course this is only one perspective but it will give you an idea of which facilities are highest rated in various areas—e.g. gastroenterology.

Hi @jackiem95,

It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic, and it’s disheartening to hear about the challenges you’ve had to face. However, I would be remiss if I didn’t try my best to address some of your concerns.

You mentioned, "They have turned me down twice—supposedly because I can get adequate care in my local area...”
It is our goal to provide the best care each patient needs, but we do not want you to incur additional costs for evaluation or travel if we feel we cannot offer care that is different from what you’re already receiving. The complexity of the medical condition, or for less complex conditions, the availability of care closer to home are important factors to consider.

With regard to Medicare, Mayo Clinic is one of the largest Medicare providers in the country. Unfortunately, we can’t honor all requests we receive from Medicare patients who want to come to Mayo Clinic. We accept Medicare patients in all parts of our practice where we have the capacity to accommodate them, and most importantly, as the medical needs of these patients require. Here’s some more information: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare

I’d also encourage you to go through these discussions on Connect:
– Medicare and Mayo https://connect.mayoclinic.org/discussion/medicare-and-mayo/
– Couldn't get appointment at Mayo Clinic. https://connect.mayoclinic.org/discussion/almost-a-half-year-wait-for-an-appointment/

I understand that Mayo has many Medicare patients. However, your CEO has openly stated Mayo's policy of prioritizing private patients over Medicare and Medicaid patients. As you know, for highly sought after specialties such as gastroenterology, there is a shortage of available appointments so obviously that puts us at the bottom of the list. As for adequate care in local areas, I think that is open to debate in many cases. If "adequate care" is available, why would we be trying so desperately to get appointments at Mayo? I have expressed my opinions about this before on the forum so enough said.

I was out-patient 11 days at Mayo Clinic Rochester in 1980. Was O/P at Jacksonville being evaluated from Aug. 2016 - February 2017 to confirm 30 diseases and to determine my level of care. It qualified me for the 120-hour Comprehensive (Pain) Rehab. Program (CRP) in March 2017. They helped me get out of a wheelchair and learn how to re-train my brain to function in spite of pain. I will always be grateful for that. However, I did get some poor advice on a couple of conditions I have that caused them to worsen.

I had applied in 2015 but was denied. You have to choose one specialty department, and because I have so many conditions, I didn’t know which one to choose from so I just picked one. It was obviously the wrong one because it was denied.

A year later, after fainting about 200 times in the previous two years and finally blacking out through a glass table, one of my local doctors told me to drive up to Jacksonville and go into the emergency room. The doctor I saw was very compassionate and called the head of ER. They were shocked at my condition and got me in within 10 days under the special exception to start the evaluation.

The 6-month evaluation was a long process and expensive to boot. Because it’s O/P, I spent five days at a hotel and tested or seen by a specialist, returned home 4 hours each way), went back 2-5 days, and so on. I had to pay to get there and back each trip. Using UBER to travel to and from the hotel to my appointments and eating out, plus the hotel, drained my wallet.

My pastor is a highly recognized physician in my town and he likes the Cleveland Clinic. If I have to go again, I think that is where I will go. I don’t know how far you are from Mayo Clinic and do not want to see you disappointed, but if your symptoms are bad enough you may be able to go into the emergency room to see if they will get you in quickly. It might be worth a try. It is a once-per lifetime offer they have for extreme cases. If you miss the appointment, you cannot be rescheduled. Because of the multitude of conditions I have, they first assigned me to a diagnostician who farmed me out to dozens of specialist.

I will always be grateful to them for getting me out of the wheelchair. However, I have not returned because of financial problems. My co-pay was about $6,000 even with Medicare. I paid all I could on it by installments, because I owed money to so many other hospitals and clinics, testing facilities and doctors. I just can’t do it. They suggested I send a compassionate letter request to the main office in Rochester. I have been unable to do that because they want me to attach so much financial documentation and I am just too sick and tired to do it. It is overwhelming.

Good luck and may God bless you. Please keep me posted. Peggy

@peggyella I am so sorry for all you have gone through. I can only imagine how disheartening it must be. I hope and pray that you will get the care you need, somewhere. Mayo, Cleveland Clinic, and Mass General are generally rated as the top three medical facilities in the country. I personally favor Mass General (MGH), where my transplant took place, but I would have gone to either of the other two if necessary.
If your insurance is inadequate to give you sufficient help, can you qualify for any assistance? I am on Medicare with one of the best supplementals so have been very fortunate in that regard. The cost of a liver transplant is astronomical.
JK

Hi @jackiem95, you are correct that some practice areas or specialties are at capacity, resulting in few available appointments. However, I would like to correct the mis-perception of prioritization of payor types. Mayo Clinic is a nonprofit organization, committed to publicly funded patients — who make up half the health system’s business.

The 2017 news reports about statements from the then CEO were certainly confusing and upsetting. http://www.startribune.com/mayo-to-pick-privately-insured-patients-amid-medicaid-pressures/416185134/ However, Mayo Clinic stressed the need to increase privately insured patients, but not at the expense of government-insured patients. Appointments are based on availability and patients' needs.

I hear you. No matter which way you slice it, being refused an appointment is a tough pill to swallow.