Evaluating Care Models at Top Hospitals to Fit an Individual Patient

Posted by mpflood7 @mpflood7, Sep 26 4:56pm

I have never been hospitalized so am a novice at choosing a hospital. That said, and especially as an out of state patient, how can a patient distinguish between top hospitals to identify which is best for his/her specific condition(s) … particularly insofar as the specific patient care model? (In a sense and by analogy to business terms, what are each top hospitals real, “competitive advantages”?) This is especially important in that I likely have a single chance to select a hospital and therefore must get it right. More specifically, I have systemic disorders that I’m told requires the “multispecialty, integrated, collaborative team” (MICT) approach offered by Mayo Clinic. The individual, “ad hoc” doctor approach has also not worked. How does this MICT approach actually work at Mayo and don’t all hospitals take this approach? (If so, how is it a true competitive advantage?) As to how the MICT approach works, does the team of specialists actually physically sit together and discuss the case? If so, are they trained well-enough to understand the other specialties? And wouldn’t it be more appropriate to directly admit the patient as an inpatient into a hospital so as to make a truly collaborative approach more effective? In practical terms, how can a “collaborative” approach even work if the patient is treated on an outpatient basis? Is it also a team of teams – in that is it a team of general internists who get together with a team of specialists (team of neurologists, hematologists, psychiatrists, etc) or simply a team of a singular internist, neurologist, hematologist, psychiatrist, etc? I want to say more on this but am quickly writing this now to get it started. Insights that even partially answer the (admittedly) many questions is appreciated. Hopefully, this can also be expanded upon. Thank you.

@mpflood7, this is such a great question. I'm going to invite a few members like @sueinmn @merpreb @hopeful33250 @contentandwell @cynaburst @jakedduck1 @jenniferhunter @IndianaScott @bbonchek @bradmm @karukgirl @tdrell who receive care at different hospitals to share their thoughts. These are just a few members who will certainly have thoughts for you. I'm confident many others will chime in too. When people get good comprehensive care, they are very passionate and loyal to the place they received that care.

The “multispecialty, integrated, collaborative team” (MICT) approach offered by Mayo Clinic serves as a model adopted by several great institutions across the US and around the world. Sadly, it is not the norm in all hospitals. You are wise to do your research.

REPLY

Hi @mpflood7, I would like to add my welcome to Connect along with @colleenyoung and other members.

I can share my story for the past 3+ years — I have been on the patient end of Mayo Clinic Rochester's collaborative team approach mentioned by Colleen. I went in because I was having swelling in both legs but more so in my right leg along with pain in my right knee. I do have degenerative arthritis and had bone on bone in the knee. During the exam when discussing the swelling in my legs and talking with me, the Mayo doctor scheduled and appointment with cardiology to check for deep vein thrombosis. I didn't have that but they also determined that the lymph system wasn't draining properly (my words) and scheduled a lymphoscintigram. The result of that was I diagnosed with lymphedema and now have to wear compression socks. During the consult with the cardiologist he asked me if I snore and I mentioned my wife says big time to the snoring. He then scheduled a test for me with sleep medicine and I had a sleep study done which showed a score of 52 obstructive sleep apneas. So I now get to use a CPAP. I'm not complaining as I hate going to the doctor and they got me on the road to being a better patient and learning how to lead a more healthy life. I also had a right knee replacement done there a year ago April based on the previous exams that started with orthopedics, involved cardiology and then sleep medicine.

Here are a few articles you may find helpful…
– How the Mayo Clinic Built Its Reputation as a Top Hospital: https://knowledge.wharton.upenn.edu/article/mayo-clinics-secret-success/
– Under One Roof: What Can we Learn from the Mayo Clinic?: https://fs.blog/2017/01/under-one-roof-what-can-we-learn-from-the-mayo-clinic/
– FAQ: How and Why We Rank and Rate Hospitals: https://health.usnews.com/health-care/best-hospitals/articles/faq-how-and-why-we-rank-and-rate-hospitals

REPLY

I am so pleased to be able to be a part of this discussion.
I first off want to say that during my initial evaluation at Mayo Clinic for HCOM, I was so impressed at the care I received at there. When the opportunity came up for me to see a top doctor at Cleveland Clinic in Cleveland, we chose to move my care there since we have family and friends there for support and it was was so much closer, not because it was any better than Mayo. My septal myectomy surgery was performed there in Feb 2020 after my visit there in November 2019. At that time, I was told I was ok, may be able to be a part of a medical trial, and come back in 6 months. That changed pretty quickly when I started to feel poorly in December and my obstruction became significant. CC responded right away resulting in my surgery in Feb 2020. I want to emphasize that I am so fortunate to have had the opportunity to be a part of both systems. Both are excellent care facilities and they both set a high standard for me. The collaborative approach in both places is so amazing. My local medical community in Southern Indiana does not come close to what they both have to offer. I feel spoiled by by experiences there and it has set the bar high for me. I fell in the Covid hole after my surgery and proper timely follow up was not available other than through the virtual visit with my CC doctor. After getting mediocre/poor care with my local cardiologist, we decided to move my care to another doctor closer to me in Indianapolis who is very specialist in this area and is a colleague of my CC doctor. What I have learned through this process is that when you have a serious heart condition, see a cardiac specialist who sees many cases instead of just a few and take it seriously. Our lives are too important.

REPLY
@johnbishop

Hi @mpflood7, I would like to add my welcome to Connect along with @colleenyoung and other members.

I can share my story for the past 3+ years — I have been on the patient end of Mayo Clinic Rochester's collaborative team approach mentioned by Colleen. I went in because I was having swelling in both legs but more so in my right leg along with pain in my right knee. I do have degenerative arthritis and had bone on bone in the knee. During the exam when discussing the swelling in my legs and talking with me, the Mayo doctor scheduled and appointment with cardiology to check for deep vein thrombosis. I didn't have that but they also determined that the lymph system wasn't draining properly (my words) and scheduled a lymphoscintigram. The result of that was I diagnosed with lymphedema and now have to wear compression socks. During the consult with the cardiologist he asked me if I snore and I mentioned my wife says big time to the snoring. He then scheduled a test for me with sleep medicine and I had a sleep study done which showed a score of 52 obstructive sleep apneas. So I now get to use a CPAP. I'm not complaining as I hate going to the doctor and they got me on the road to being a better patient and learning how to lead a more healthy life. I also had a right knee replacement done there a year ago April based on the previous exams that started with orthopedics, involved cardiology and then sleep medicine.

Here are a few articles you may find helpful…
– How the Mayo Clinic Built Its Reputation as a Top Hospital: https://knowledge.wharton.upenn.edu/article/mayo-clinics-secret-success/
– Under One Roof: What Can we Learn from the Mayo Clinic?: https://fs.blog/2017/01/under-one-roof-what-can-we-learn-from-the-mayo-clinic/
– FAQ: How and Why We Rank and Rate Hospitals: https://health.usnews.com/health-care/best-hospitals/articles/faq-how-and-why-we-rank-and-rate-hospitals

Jump to this post

I have some reading to do. Thank you very much John. I hope you stay healthy.

REPLY
@bbonchek

I am so pleased to be able to be a part of this discussion.
I first off want to say that during my initial evaluation at Mayo Clinic for HCOM, I was so impressed at the care I received at there. When the opportunity came up for me to see a top doctor at Cleveland Clinic in Cleveland, we chose to move my care there since we have family and friends there for support and it was was so much closer, not because it was any better than Mayo. My septal myectomy surgery was performed there in Feb 2020 after my visit there in November 2019. At that time, I was told I was ok, may be able to be a part of a medical trial, and come back in 6 months. That changed pretty quickly when I started to feel poorly in December and my obstruction became significant. CC responded right away resulting in my surgery in Feb 2020. I want to emphasize that I am so fortunate to have had the opportunity to be a part of both systems. Both are excellent care facilities and they both set a high standard for me. The collaborative approach in both places is so amazing. My local medical community in Southern Indiana does not come close to what they both have to offer. I feel spoiled by by experiences there and it has set the bar high for me. I fell in the Covid hole after my surgery and proper timely follow up was not available other than through the virtual visit with my CC doctor. After getting mediocre/poor care with my local cardiologist, we decided to move my care to another doctor closer to me in Indianapolis who is very specialist in this area and is a colleague of my CC doctor. What I have learned through this process is that when you have a serious heart condition, see a cardiac specialist who sees many cases instead of just a few and take it seriously. Our lives are too important.

Jump to this post

Thank you and good luck with your cardiac issue.

REPLY

Hi mpflood7…..first let me say that I am very impressed with your objective efforts to determine how to obtain quality /comprehensive care. I suspect with your inquisitive nature…..by asking questions …not assuming etc….you possibly would receive a safe level of care anywhere. The staff would realize you expect safe and thorough care….your “eyes are wide open.”
As a RN I have had an advantage over the years in trying to match medical situations that I /family/friends have had with the best provider. So I would say if you know anyone in medical field, pump their brains for input….but be sure you have confidence in their judgement. Also talk to people who you trust to see if they have recommendations. I once asked a radiologist tech who he would use with hand issue….a nurse on orthopedic floor and a PT person who they would go to for hip replacement.
Make full use of the internet….be wary of things saying AD….and too high up in Google …
Call the place….what does your intuition tell you of how they sound.
You mentioned you will have one shot at going to a place….that’s sorta hard I think…..to determine which route to take for my husband’s prostrate cancer, we checked out 4 places,4 different approaches, and chose the one that we were most comfortable with…and still are 16 years later.
With my diagnosis 4 years ago with NTM infection in lungs, I spent lots of time on google learning about the bacterium, read link to this Support Group from Mayo Clinic. Coincidently it mentioned that there was going to be a day Seminar on NTM infections for patients and families in Denver in a month at National Jewish Health. Fortunately my daughter had just moved there so I would not have expenses and stress of knowing no one in an unfamiliar city.
So I began the process of being a patient there and attended the workshop where I could hear/see their specialists. I began as a patient there 4 months later, was scheduled for a 14 day evaluation….have returned for annual check ups and another annual workshop.
I did see a local infectious disease Dr prior to my visit to NJH who based on one culture would have started me on the rigorous 3 antibiotic anti TB regime …NJH told me that their criteria are 2 positive cultures and Bronchiectasis on Chest CAT scan…none of which I had.
They told me this…that I did not need RX on 3rd day there….rather than make me wait the 14 days in suspense….very caring.
Their doctors spend time with their clients….our poor local drs are scheduled with a patient every 15 minutes or less.

You mentioned you would like being hospitalized while undergoing a work up….even before days of COVID….no…still too hazardous. ….and disruptive to your habits. At NJH as a new patient….at that time… you would be assigned a hospital room to use between appts for your 2 weeks there. Could even order up delicious meals ….no cost.
I loved reading their history….was astounded that they did not charge patients til 1968 .
I could go on and on…it reassures me that there is a place like this I could go to…hope you find one you will feel same way about.tdrell😀

REPLY

@mpflood7– Good morning and welcome to Mayo Clinic Connect. Wow, what a fantastic question! And one that everyone should ask. I know that it's scary to go to a hospital, even if it's your one-hundredth time, never mind your first. Consumer Reports have a yearly report of all the top hospitals and their specialties so you might want to check there.
https://www.consumerreports.org/hospitals/HowToChooseAHospital/
I think that when you need to choose a hospital for specialty care it's important to find a teaching hospital. Teaching hospitals develop new and better ways to care for patients through outcomes-based research and the development of new technologies. The downside to this is that you will most likely be working with students along with your doctors. The second thing to look for is location. I'm an hour, by train, to Mass General in New England so I go there. When I had my first lung operation my pulmonologist recommended a young doctor who studied at Harvard who practiced in a local hospital. After he left for MGH to be closer to his home I followed him for my follow-up CT scans and a need for a second lobectomy for my second cancer. He has been my lead doctor for 23 years next month. The difference between hospitals and patient care was incredible.

You are right that ad hoc care doesn't work with patients because there is no real coordinated teamwork and for great care, there needs to be a coordinated effort of care between doctors who do get together in some sort of committee meeting to decide what to present to the patient as their best recommendations for care and survival and life quality. I have an Oncologist who is in charge of my care, a surgeon (who, because of our long term relationship ok's everything lol), a radiologist oncologist, and more for other problems. But my care is essentially coordinated by one doctor.

I think that when insurance companies took over patient care inpatient collaborative care for diagnostic purposes flew out the window. Because doctors who work in the type of system are lined up to work with each other they are selected because of their understandings of each others specialty. I don't think that it would work otherwise, and it's one of the reasons that ad hoc care doesn't work.

When I made my decision to follow my doctor to MGH I made it knowing that it was the best care that I could get and that I could be an out of state patient because I had insurance that paid for it. Have you checked to see if your insurance covers out of state medical care?

REPLY
@colleenyoung

@mpflood7, this is such a great question. I'm going to invite a few members like @sueinmn @merpreb @hopeful33250 @contentandwell @cynaburst @jakedduck1 @jenniferhunter @IndianaScott @bbonchek @bradmm @karukgirl @tdrell who receive care at different hospitals to share their thoughts. These are just a few members who will certainly have thoughts for you. I'm confident many others will chime in too. When people get good comprehensive care, they are very passionate and loyal to the place they received that care.

The “multispecialty, integrated, collaborative team” (MICT) approach offered by Mayo Clinic serves as a model adopted by several great institutions across the US and around the world. Sadly, it is not the norm in all hospitals. You are wise to do your research.

Jump to this post

@colleenyoung– Thank you for inviting me into this conversation.

REPLY
@colleenyoung

@mpflood7, this is such a great question. I'm going to invite a few members like @sueinmn @merpreb @hopeful33250 @contentandwell @cynaburst @jakedduck1 @jenniferhunter @IndianaScott @bbonchek @bradmm @karukgirl @tdrell who receive care at different hospitals to share their thoughts. These are just a few members who will certainly have thoughts for you. I'm confident many others will chime in too. When people get good comprehensive care, they are very passionate and loyal to the place they received that care.

The “multispecialty, integrated, collaborative team” (MICT) approach offered by Mayo Clinic serves as a model adopted by several great institutions across the US and around the world. Sadly, it is not the norm in all hospitals. You are wise to do your research.

Jump to this post

Thanks, Colleen, for inviting me into this discussion, even though I haven't been a Mayo patient.
@mpflood7 – How wise to research this issue ahead of your visit!

I can share my story of care in the large multi-specialty practice I have been with for 45 years now in the Twin Cities, and contrast it with the care provided through an independent ortho practice I also use. Over that time I have dealt with many health issues.

Here is how the group practice collaborates – I have a primary physician, chosen after several earlier docs "moved on" to other practices. She readily acknowledges when a health concern is beyond her expertise and refers me to a specialist. Based on our working relationship, and her knowledge, she "matches" me with the specialist best suited to my problem and whose expertise and approach she respects. At times she has cautioned me that I need to travel across town to get better care as the local specialist is not the best one for me. It is important to me that she continues to study (she was recently certified in Gerontology – nice since I'm now older) because it tells me she is keeping up on the latest in medicine.

The specialists collaborate with my primary, and at times with additional specialists to plan and manage my care. When hospitalized, other than surgeons, the docs may not be in the hospital, and my care is overseen by a hospitalist who is part of the clinic team. He consults as often as necessary with my clinical care team as well as docs in the hospital.

Recently, I have been treated by my primary, pulmonologist, infectious disease doc, pain management doc, bone specialist, opthalmologist and a specially trained physical therapist, all of whom communicate to manage my care. Several of them have also called me personally to respond to questions sent by other team members or through the patient portal.

This same group managed my Mom's very complex medical issues, all the way through compassionate end-of-life care, and communicated with my sister and me through the entire process. My daughter was the case manager in the assisted living facility where Mom lived, and said her clinic was one of few that always responded timely to her when she left messages, and never required multiple calls to get a reply.

In sharp contrast, my ortho docs, whom I have chosen individually for their specialties in specific surgeries, are in a well-respected but not collaborative practice. When I had severe medical issues after hip surgery, the surgeon never responded to repeated pages and calls, and finally the hospitalist from my clinic stepped in and brought in appropriate specialists. When I asked the surgeon why, he said he knew they would "take care of it" – needless to say I never saw him again & filed a complaint. When my hand surgeon left the practice and I asked for referral to another, who would do a very specific procedure, all I got was a list of their hand surgeons. I had to call my hand therapist for a recommendation to the best person.

I hope this (long) description of how multi-specialty integrated care can work helps you in your decision making. If I did not have this practice to rely on, I would be a Mayo patient, and in fact at one point in my lung illness, the docs were considering referring me there.

I wish you good luck as you seek help – dealing with complex medical issues can be daunting. The added pressure of having only a single opportunity to choose a hospital makes it even more difficult. Mayo is truly a place for the best of care – when my daughter was a paramedic, she often met planes in Minneapolis and transported patients from all over the world to Rochester.
Sue

REPLY
@sueinmn

Thanks, Colleen, for inviting me into this discussion, even though I haven't been a Mayo patient.
@mpflood7 – How wise to research this issue ahead of your visit!

I can share my story of care in the large multi-specialty practice I have been with for 45 years now in the Twin Cities, and contrast it with the care provided through an independent ortho practice I also use. Over that time I have dealt with many health issues.

Here is how the group practice collaborates – I have a primary physician, chosen after several earlier docs "moved on" to other practices. She readily acknowledges when a health concern is beyond her expertise and refers me to a specialist. Based on our working relationship, and her knowledge, she "matches" me with the specialist best suited to my problem and whose expertise and approach she respects. At times she has cautioned me that I need to travel across town to get better care as the local specialist is not the best one for me. It is important to me that she continues to study (she was recently certified in Gerontology – nice since I'm now older) because it tells me she is keeping up on the latest in medicine.

The specialists collaborate with my primary, and at times with additional specialists to plan and manage my care. When hospitalized, other than surgeons, the docs may not be in the hospital, and my care is overseen by a hospitalist who is part of the clinic team. He consults as often as necessary with my clinical care team as well as docs in the hospital.

Recently, I have been treated by my primary, pulmonologist, infectious disease doc, pain management doc, bone specialist, opthalmologist and a specially trained physical therapist, all of whom communicate to manage my care. Several of them have also called me personally to respond to questions sent by other team members or through the patient portal.

This same group managed my Mom's very complex medical issues, all the way through compassionate end-of-life care, and communicated with my sister and me through the entire process. My daughter was the case manager in the assisted living facility where Mom lived, and said her clinic was one of few that always responded timely to her when she left messages, and never required multiple calls to get a reply.

In sharp contrast, my ortho docs, whom I have chosen individually for their specialties in specific surgeries, are in a well-respected but not collaborative practice. When I had severe medical issues after hip surgery, the surgeon never responded to repeated pages and calls, and finally the hospitalist from my clinic stepped in and brought in appropriate specialists. When I asked the surgeon why, he said he knew they would "take care of it" – needless to say I never saw him again & filed a complaint. When my hand surgeon left the practice and I asked for referral to another, who would do a very specific procedure, all I got was a list of their hand surgeons. I had to call my hand therapist for a recommendation to the best person.

I hope this (long) description of how multi-specialty integrated care can work helps you in your decision making. If I did not have this practice to rely on, I would be a Mayo patient, and in fact at one point in my lung illness, the docs were considering referring me there.

I wish you good luck as you seek help – dealing with complex medical issues can be daunting. The added pressure of having only a single opportunity to choose a hospital makes it even more difficult. Mayo is truly a place for the best of care – when my daughter was a paramedic, she often met planes in Minneapolis and transported patients from all over the world to Rochester.
Sue

Jump to this post

Thank you. Very informative. I am particularly interested in both the collaborative and the comparative aspects which you addressed. A theme well-underscored in your comment re: collaborative is the quality communication. And learning about the process regarding the integrated versus specialty comparison is also helpful.

In so far as systemic disorders, it puzzles me that the trend (in both training and practice) seems to be toward greater specialization when no individual organ can be viewed in isolation from its role in the functioning of the overall body. My father specialized in cardiopulmonary but always had a stack of internal medicine journals to read every Sunday (day off) – and stay abreast of holistic medical developments. This allowed him to be both a generalist and a specialist, which is what am told is needed in my case.

Do you (or anyone) know whether the Mayo approach emphasizes the idea of a generalist/specialist in their doctors?

REPLY

@mpflood7, My primary care doctor at our local Mayo Family Health Clinic in the Rochester, MN area is part of a team of doctors that work together on diagnostic and health questions. Best example from my experience is I have had numbness that started in my toes on both feet and gradually worked it's way up to below my knees. Years ago my primary care doctor thought that it was nerve damage and when I asked if they do the tests to determine there is nerve damage, what can be done. I was told nothing because they can only help with the pain symptoms so I put it off until a few years ago. I pressed my primary care doctor and she prescribed gabapentin which I took for a couple of weeks. After seeing no results I stopped taking it and met with the doctor again. She brought in the head of the team of doctors to confer. He asked me a few questions and reaffirmed gabapentin doesn't help for numbness. Then he setup and appointment for me with neurology at Rochester Mayo for a nerve conduction test and an EMG. After the tests, he setup the appointment with the neurologist who sadly told me the same thing the first primary care doc told me. I then started a mission of my own to learn as much as I can about my health conditions starting with the neuropathy.

This experience for me was an eye opener and taught me to ask more and hopefully better questions of my doctors. I had the good fortune to meet Dr. Victor Montori at a Mayo Clinic Social Media Network gathering a few years ago who is a big proponent of changing the doctor/patient interaction. He has a website with more information that you may find helpful – https://patientrevolution.org/

REPLY

Thank you. Your comment generally helps me clarify what I need medically – and helps me think further as well as raise questions I haven’t thought of. Good luck with the neuropathy.

REPLY
@merpreb

@mpflood7– Good morning and welcome to Mayo Clinic Connect. Wow, what a fantastic question! And one that everyone should ask. I know that it's scary to go to a hospital, even if it's your one-hundredth time, never mind your first. Consumer Reports have a yearly report of all the top hospitals and their specialties so you might want to check there.
https://www.consumerreports.org/hospitals/HowToChooseAHospital/
I think that when you need to choose a hospital for specialty care it's important to find a teaching hospital. Teaching hospitals develop new and better ways to care for patients through outcomes-based research and the development of new technologies. The downside to this is that you will most likely be working with students along with your doctors. The second thing to look for is location. I'm an hour, by train, to Mass General in New England so I go there. When I had my first lung operation my pulmonologist recommended a young doctor who studied at Harvard who practiced in a local hospital. After he left for MGH to be closer to his home I followed him for my follow-up CT scans and a need for a second lobectomy for my second cancer. He has been my lead doctor for 23 years next month. The difference between hospitals and patient care was incredible.

You are right that ad hoc care doesn't work with patients because there is no real coordinated teamwork and for great care, there needs to be a coordinated effort of care between doctors who do get together in some sort of committee meeting to decide what to present to the patient as their best recommendations for care and survival and life quality. I have an Oncologist who is in charge of my care, a surgeon (who, because of our long term relationship ok's everything lol), a radiologist oncologist, and more for other problems. But my care is essentially coordinated by one doctor.

I think that when insurance companies took over patient care inpatient collaborative care for diagnostic purposes flew out the window. Because doctors who work in the type of system are lined up to work with each other they are selected because of their understandings of each others specialty. I don't think that it would work otherwise, and it's one of the reasons that ad hoc care doesn't work.

When I made my decision to follow my doctor to MGH I made it knowing that it was the best care that I could get and that I could be an out of state patient because I had insurance that paid for it. Have you checked to see if your insurance covers out of state medical care?

Jump to this post

My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

REPLY
@jabaird2002

My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

Jump to this post

Hi @jabaird2002,
I hear you. You are at the end of your rope. I recommend that you follow the Digestive Health group here: https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

In particular this discussion may be relevant for you:
– Extreme weight loss, cannot eat. No diagnosis yet.: https://connect.mayoclinic.org/discussion/extreme-weight-loss/
Continue to ask questions and advocate for your care.

REPLY
@tdrell

Hi mpflood7…..first let me say that I am very impressed with your objective efforts to determine how to obtain quality /comprehensive care. I suspect with your inquisitive nature…..by asking questions …not assuming etc….you possibly would receive a safe level of care anywhere. The staff would realize you expect safe and thorough care….your “eyes are wide open.”
As a RN I have had an advantage over the years in trying to match medical situations that I /family/friends have had with the best provider. So I would say if you know anyone in medical field, pump their brains for input….but be sure you have confidence in their judgement. Also talk to people who you trust to see if they have recommendations. I once asked a radiologist tech who he would use with hand issue….a nurse on orthopedic floor and a PT person who they would go to for hip replacement.
Make full use of the internet….be wary of things saying AD….and too high up in Google …
Call the place….what does your intuition tell you of how they sound.
You mentioned you will have one shot at going to a place….that’s sorta hard I think…..to determine which route to take for my husband’s prostrate cancer, we checked out 4 places,4 different approaches, and chose the one that we were most comfortable with…and still are 16 years later.
With my diagnosis 4 years ago with NTM infection in lungs, I spent lots of time on google learning about the bacterium, read link to this Support Group from Mayo Clinic. Coincidently it mentioned that there was going to be a day Seminar on NTM infections for patients and families in Denver in a month at National Jewish Health. Fortunately my daughter had just moved there so I would not have expenses and stress of knowing no one in an unfamiliar city.
So I began the process of being a patient there and attended the workshop where I could hear/see their specialists. I began as a patient there 4 months later, was scheduled for a 14 day evaluation….have returned for annual check ups and another annual workshop.
I did see a local infectious disease Dr prior to my visit to NJH who based on one culture would have started me on the rigorous 3 antibiotic anti TB regime …NJH told me that their criteria are 2 positive cultures and Bronchiectasis on Chest CAT scan…none of which I had.
They told me this…that I did not need RX on 3rd day there….rather than make me wait the 14 days in suspense….very caring.
Their doctors spend time with their clients….our poor local drs are scheduled with a patient every 15 minutes or less.

You mentioned you would like being hospitalized while undergoing a work up….even before days of COVID….no…still too hazardous. ….and disruptive to your habits. At NJH as a new patient….at that time… you would be assigned a hospital room to use between appts for your 2 weeks there. Could even order up delicious meals ….no cost.
I loved reading their history….was astounded that they did not charge patients til 1968 .
I could go on and on…it reassures me that there is a place like this I could go to…hope you find one you will feel same way about.tdrell😀

Jump to this post

Thank you. My mother and grandmother were nurses, so I am a fan.

Regarding being assigned a hospital room, can you clarify? Do you mean you had regular access to a dedicated hospital room even as an outpatient?

REPLY
Please login or register to post a reply.