Considering going to Mayo Clinic in Arizona, need advice please!

Posted by casty @casty, Feb 16 2:37pm

Hello,

I'm posting this to get feedback on what me and my family will be doing and also perhaps connect with someone that is going through the same thing or has a family member with the same issues as my mother.

Pardon any typos.

I have known about Mayo Clinic for sometime now but never thought about actually give it a chance (in any of the locations) until today. The reason being is that my mother has not been getting the proper treatment for her failing left kidney (or what is left of it). Due to medical negligence. It started when her gallbladder was removed back in 2009. Things have gotten worse over the past 10 years.
Background:
My mother does not have any other medical issues. She was fine until she started to vomit one evening and got very sick. She was rushed to the hospital (here in Florida.)
They told her she needed her gallbladder removed. Ever since then, she started to suffer from lower left quadrant pain. At first, it was dull pain and the general surgeon that removed her gallbladder told her that she needed hernias removed. (That was not true.) She then went to another surgeon and got some removed. That did not resolve the pain. The pain got worse over the years and later on her blood pressure started to sky rocket. Before she could control it with blood pressure medication but now not even her high dose pain medications can help.
We have gone to all different types of specialists figuring out what this was. Every single one said that either she has nothing, or throw us to another doctor. Rise and repeat.
We have seen a gastrologist, a gynecologist, a urologist and others. They all claim that her tests have come back normal and that both kidneys are fine. However she is showing signs of someone that is going through kidney failure (high blood pressure that cannot be control, pain near the area where a kidney transplant would be, difficulty with going to the bathroom, foul smell from area of pain, completely bed ridden, etc.)
My mother has gotten all sorts of tests, CT scans, Hida, MRI, and more. In most CT scan reports, they say there is scarring on the left kidney. She did a blood test that was done by a doctor a few years ago that looked at hormones produced by the left one and the blood test came back abnormal. We have stacks of medical records and reports dating back to 2009.

This has all gone on in florida, and we know for a fact that her left kidney is either dying or something else was put in there without us knowing. She needed to be admitted to the hospital a few days ago (she had to be taken to the hospital so many times throughout the years due to this.) and they properly detected her blood pressure (256/133, numbers similar to this. It is ALWAYS high.) along with running a CT scan where they said that they see a blockage near the area of the pain.

My mother needs an endoscopy done (they told her this.) and more than likely a biopsy of her lower left quadrant. (was suggested by a few doctors in the past but NOTHING was done or no follow up.)

In short:
Lower left quadrant pain. Foul smell from that area only. High blood pressure that cannot be controlled by her blood pressure pills (And any.)

Shows al signs of failing left kidney or transplanted one. Doctors in the past asked her if she received a kidney transplant due to medical history, symptoms, area of pain.

Pain and blood pressure has not gotten better.

High dose pain medication that she takes for knee replacement and ankle reconstruction surgery does not help with pain.

Doctors in Florida have not helped and claim that she is fine. She is not and is only getting worse.

Area outside of our town gave her proper treatment but cannot perform endoscopy.

This is the only good experience we have had here in Florida. My mother wants to try outside of Florida due to history.

This started in 2009 after gallbladder was removed. We have been dealing this for 10+ years now…

My question, with this information:

Would it be worth it to go to Mayo Clinic and see if they can properly treat my mother? I honestly would not be writing this out if this situation was resolved but it has not and I honestly do not know what else to do or where else to go. Every doctor comes up with an excuse to not treat my mother or forces her to go to the hospital, lower her blood pressure (it doesn't stay low for long…) then send her out with no follow up. Still in pain and high blood pressure due to pain. Only one hospital (one that we went to a few days ago) gave use a follow up. But we are very afraid of trying again in Florida.

Does the location at Phoenix, Arizona have doctors that specialize in kidney health?

We have brought all medical records, scans, cds to each and every doctor we went to, and they were ignored or not taken seriously. Will those that work at Mayo Clinic take the time to view the information on those records and listen to us?

Sorry if this is posted in the wrong group. Thank you for reading and take care.

@casty Hi and welcome to Mayo Connect. My goodness your poor mom has been through the works without getting any answers. I’m so sorry she’s feeling so ill and doesn’t seem to be getting the help she requires.
Have you contacted Mayo in Jacksonville? She’s already in Florida from what I’m reading. It would save a lengthy trip to Arizona, considering her health and it wouldn’t matter to Mayo Clinic if she’s previously seen someone else in Florida. From my experience, Mayo Clinic takes every patient seriously and works to find the answers. That is their main focus,

At the top of this page there is a box with Appointment. It will direct you to the clinic which is most convenient. She doesn’t need a referral but you do need to make an appointment. Any of the 3 locations would provide the very best opportunity for your mother to get to the bottom of things. I’m sure that would relieve your stress and hers too!

Wow, her blood pressure is really high. Is she on any medication to bring that under control? Does your mom have a fever? You mention a foul smell from her lower left quadrant. This is coming from her back through her skin? Does she have an open wound there? Would she be comfortable returning to the hospital where she had the follow up and have the endoscopy there? It does sound as though she needs immediate care.

I know there’s a lot of questions but it would help to clarify a little more, though you’ve certainly given a good history of events. Lori

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@loribmt

@casty Hi and welcome to Mayo Connect. My goodness your poor mom has been through the works without getting any answers. I’m so sorry she’s feeling so ill and doesn’t seem to be getting the help she requires.
Have you contacted Mayo in Jacksonville? She’s already in Florida from what I’m reading. It would save a lengthy trip to Arizona, considering her health and it wouldn’t matter to Mayo Clinic if she’s previously seen someone else in Florida. From my experience, Mayo Clinic takes every patient seriously and works to find the answers. That is their main focus,

At the top of this page there is a box with Appointment. It will direct you to the clinic which is most convenient. She doesn’t need a referral but you do need to make an appointment. Any of the 3 locations would provide the very best opportunity for your mother to get to the bottom of things. I’m sure that would relieve your stress and hers too!

Wow, her blood pressure is really high. Is she on any medication to bring that under control? Does your mom have a fever? You mention a foul smell from her lower left quadrant. This is coming from her back through her skin? Does she have an open wound there? Would she be comfortable returning to the hospital where she had the follow up and have the endoscopy there? It does sound as though she needs immediate care.

I know there’s a lot of questions but it would help to clarify a little more, though you’ve certainly given a good history of events. Lori

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Hi
I think this email was meant for someone else.

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@roberta73

Hi
I think this email was meant for someone else.

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@roberta73 Hi Roberta. Are you by any chance ‘following’ this posting? If so that could explain why it landed in your mailbox as a notification. If you got this by mistake I’m truly sorry and have no other explanation. If you look at the initial post which Casty wrote, at the bottom there will be a Plus sign with Following next to it. Click on there, it will take you to a menu of options for notifications. Select the one that says Unfollow. Do not notify me about this anymore. That should do it! Hope that helps!! Lori.

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@loribmt

@casty Hi and welcome to Mayo Connect. My goodness your poor mom has been through the works without getting any answers. I’m so sorry she’s feeling so ill and doesn’t seem to be getting the help she requires.
Have you contacted Mayo in Jacksonville? She’s already in Florida from what I’m reading. It would save a lengthy trip to Arizona, considering her health and it wouldn’t matter to Mayo Clinic if she’s previously seen someone else in Florida. From my experience, Mayo Clinic takes every patient seriously and works to find the answers. That is their main focus,

At the top of this page there is a box with Appointment. It will direct you to the clinic which is most convenient. She doesn’t need a referral but you do need to make an appointment. Any of the 3 locations would provide the very best opportunity for your mother to get to the bottom of things. I’m sure that would relieve your stress and hers too!

Wow, her blood pressure is really high. Is she on any medication to bring that under control? Does your mom have a fever? You mention a foul smell from her lower left quadrant. This is coming from her back through her skin? Does she have an open wound there? Would she be comfortable returning to the hospital where she had the follow up and have the endoscopy there? It does sound as though she needs immediate care.

I know there’s a lot of questions but it would help to clarify a little more, though you’ve certainly given a good history of events. Lori

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No we have not contacted the one in Jacksonville. I will see if my mother wants to try this location.

Yes she is on medication for the blood pressure and it is not working. We have tried others in the past but it caused bad side effects.

The smell is mostly in the front. It does sometimes appear in the back.

She currently does have a wound in the area of the pain, it was addressed by the hospital that she went to last week. (this is completely new and did not happen until last week. It occured by itself after a strange bruise like spot appeared.)

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Good morning @casty, may I ask, in addition to Lori's questions, is it a pressure wound on your mother's back from laying down on it frequently or is your mother pretty mobile?

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@casty Hi, I was just going to ask the same question as Amanda. You mentioned your mother was bedridden and I was wondering if the wound that is being treated is a pressure wound (bed sore)? Also, is your mom diabetic?

On Mayo Clinic Connect, we’re not medical professional and can’t diagnose health problems but we can draw on our experiences.
Your poor mom has gone through the ringer and is certainly having some serious health issues. I’m a bit confused by your mom’s reluctance to stay in her home state of Florida. Seeking treatment in another state might not produce any differing results and to travel somewhere else in poor health could be difficult for her. Florida a pretty large state with some good health care. It seems to me, your mom needs more immediate care if she’s dealing with wounds, an odor from that area, pain and very high blood pressure.

If this were my mom, I’d make an appt with a general practitioner/primary care doctor convenient to the area, so that she can be seen by one doctor who can coordinate her care with specialists. She may even need a short stay in a nursing home for monitoring.
You mentioned Mayo Clinic which might be an option for long term diagnosis and treatment, but she may need more immediate attention than waiting to schedule a consult with them.
Is there a larger city near you where you could make an appointment if she’s not comfortable with her local practitioners? You mentioned a recent CT scan showed a blockage in her lower left quadrant and that she needs an endoscopy. Did you mean a colonoscopy? An endoscopy is for the esophagus, stomach and beginning of the small intestine and not really in the lower quadrant. But whatever, if she has a blockage that really needs to be addressed quickly and could be the cause of some of her pain.
Certainly wishing your mom all the best. You’re a wonderful daughter to be so concerned and trying to find the best care for her. Lori.

REPLY
@loribmt

@casty Hi, I was just going to ask the same question as Amanda. You mentioned your mother was bedridden and I was wondering if the wound that is being treated is a pressure wound (bed sore)? Also, is your mom diabetic?

On Mayo Clinic Connect, we’re not medical professional and can’t diagnose health problems but we can draw on our experiences.
Your poor mom has gone through the ringer and is certainly having some serious health issues. I’m a bit confused by your mom’s reluctance to stay in her home state of Florida. Seeking treatment in another state might not produce any differing results and to travel somewhere else in poor health could be difficult for her. Florida a pretty large state with some good health care. It seems to me, your mom needs more immediate care if she’s dealing with wounds, an odor from that area, pain and very high blood pressure.

If this were my mom, I’d make an appt with a general practitioner/primary care doctor convenient to the area, so that she can be seen by one doctor who can coordinate her care with specialists. She may even need a short stay in a nursing home for monitoring.
You mentioned Mayo Clinic which might be an option for long term diagnosis and treatment, but she may need more immediate attention than waiting to schedule a consult with them.
Is there a larger city near you where you could make an appointment if she’s not comfortable with her local practitioners? You mentioned a recent CT scan showed a blockage in her lower left quadrant and that she needs an endoscopy. Did you mean a colonoscopy? An endoscopy is for the esophagus, stomach and beginning of the small intestine and not really in the lower quadrant. But whatever, if she has a blockage that really needs to be addressed quickly and could be the cause of some of her pain.
Certainly wishing your mom all the best. You’re a wonderful daughter to be so concerned and trying to find the best care for her. Lori.

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This is not a bed sore. My mother is not diabetic. She has no other health issues except for what is going on and what I mentioned.
I completely understand that you are not medical professionals. I posted this to see if anyone else was going through the same thing and to see what they did to resolve it. I appreciate you and others for taking the time to reply.

The reason why she is a bit worried about trying out another city here in Florida. (which I mentioned) is because of the treatment she has received from most doctors in the Tampabay area. As I said, they either do not do a follow up, some would not take a look at all of the previous medical records that we brought with us and there were even some that claimed that my mother is crazy and this is all because she is overweight. So I am sorry, but I do not agree that Florida has a good healthcare system. We have called Medicare and medicate multiple times in the past to both file a complaint against some doctors and warning them that some were charging high amount of money for things that my mother did not need. There is a LOT more to it but I really would not like to sit in front of my computer for a few hours typing it out.

It had gone to a point when we contacted government officials and those that dealt with things similar to what my mother is going through to no avail.

I have done this time again and again (general practitioners, surgeons, the lot) and they mostly focused on her blood pressure which is high due to what I mentioned in my first post. They never try to get to the bottom of what is causing this pain that she has or even dig deeper into her past records.

That is what my mother told me (about needing an endoscopy) when they released her from the hospital last week. But it could be what you mentioned as well. The thing is, even though we would tell the person that would try to perform the test on her that her blood pressure is high due to pain and cannot be controlled with her medication, instead of figuring out a way to lower it down to a safe level then going on with it, they would admit her to the hospital and then same thing would happen again. It is an endless cycle.

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@casty

This is not a bed sore. My mother is not diabetic. She has no other health issues except for what is going on and what I mentioned.
I completely understand that you are not medical professionals. I posted this to see if anyone else was going through the same thing and to see what they did to resolve it. I appreciate you and others for taking the time to reply.

The reason why she is a bit worried about trying out another city here in Florida. (which I mentioned) is because of the treatment she has received from most doctors in the Tampabay area. As I said, they either do not do a follow up, some would not take a look at all of the previous medical records that we brought with us and there were even some that claimed that my mother is crazy and this is all because she is overweight. So I am sorry, but I do not agree that Florida has a good healthcare system. We have called Medicare and medicate multiple times in the past to both file a complaint against some doctors and warning them that some were charging high amount of money for things that my mother did not need. There is a LOT more to it but I really would not like to sit in front of my computer for a few hours typing it out.

It had gone to a point when we contacted government officials and those that dealt with things similar to what my mother is going through to no avail.

I have done this time again and again (general practitioners, surgeons, the lot) and they mostly focused on her blood pressure which is high due to what I mentioned in my first post. They never try to get to the bottom of what is causing this pain that she has or even dig deeper into her past records.

That is what my mother told me (about needing an endoscopy) when they released her from the hospital last week. But it could be what you mentioned as well. The thing is, even though we would tell the person that would try to perform the test on her that her blood pressure is high due to pain and cannot be controlled with her medication, instead of figuring out a way to lower it down to a safe level then going on with it, they would admit her to the hospital and then same thing would happen again. It is an endless cycle.

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@casty

My goodness, this has sure been an ongoing saga for your poor mum.
From the experiences you’ve relayed, your mom has clearly lost faith and isn’t satisfied with with her current providers in the Tampa area. You mentioned Mayo-Phoenix in your original post. However, Mayo Clinic-Jacksonville is much closer and would offer the same comprehensive level of expertise. Then she wouldn’t have to make that lengthy trip to Arizona if she’s not feeling well.

Mayo Clinic, no matter which of the 3 locations, has an exceptional standard of care. So if they are able to offer assistance to your mom, it wouldn’t make any difference which campus she attended. I know your mom doesn’t trust the medical community in Florida however, Mayo Clinic is an independent medical facility and sets their own standard of excellence.

Hopefully someone on this Connect forum will respond with some suggestions which will be helpful to you and your mom. Lori

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Hi @casty, I encourage you to call Mayo Clinic in Jacksonville, Florida. As @loribmt mentioned, it is closer that Arizona and all Mayo Clinic locations provide that same comprehensive, patient-centered care. Here are the contact numbers of all Mayo Clinic locations: http://mayocl.in/1mtmR63

Calling to inquire costs nothing. I hope you will contact them.

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