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mlane68
@mlan68

Posts: 8
Joined: Jun 25, 2016

Infrarenal Aortic Aneurysm Repair Now another?

Posted by @mlan68, Jun 24, 2016

My 68 year old very energetic “on the go” mom got sick in Feb. of this year with a cold that progressed to the point of an ER visit at the end of March. A CT scan revealed an abdominal aortic aneurysm and the endovascular repair was done at the end of April. As soon as she exited the recovery room she became sick vomiting and diarrhea and after being released made 6 more trips back to the hospital where some led to admittance for more than 7 days.

Between the end of April post repair and now, she was back 6 times, lost weight due to the vomiting and diarrhea, had no appetite and simply couldn’t keep anything down and had low right abdominal pain her and there that radiated to her back. The longest stay was due to C diff. infection. The doctor said he really wasn’t sure that was her problem but he was out of options to diagnose her with. She was finally able to eat a little and begin to recover.

June 14 she called the ambulance due to a sharp pain in her right lower quadrant of her abdomen radiating to her back and was released on June 22. The reason was for a right kidney infarction that was later denied by another doctor. There were so many doctors and each said something contrary to the other. I decided the best route was to get a copy of the doctors notes from the visit. In these notes I found the tests revealed 2 heart valve regurgitation, kidney infarction, kidney injury, bibasilar atelectasis which is a partial collapse of a lung a breathing complication after surgery and another even bigger renal aortic aneurysm among other things.

I don’t mean to scare anybody but I wonder a few things. Why were we not informed of some of the findings? How did they miss another aneurysm or did they indeed cause it? Why does the vascular surgeon not cooperate with the diagnosis and treatment of her problem and just keep giving her the “everything is fine” spill? When I called for the follow up appointment the hospital recommended the doctor had told them to tell us that the only thing needed was the 3 month visit, nothing quicker. I’m not trying to point a finger just trying to find someone to help my mom. It’s hard to see her weak and sick and worry about whether or not today is the last day with her. Before the surgery she was so vibrant, even having the great grandkids over for the summer. Something happened to my mom in that operating room and I really need to find out what it’s going to take to get her back to where she was.

There’s so much that could have happened including aortic infection and I don’t want anyone in trouble just help for her. In addition, she’s diabetic, anemic and has COPD. One of her plaque meds valsartan is suspected to worsen the kidney infarction.

Liked by monaza

REPLY

Hi @mlan68, and welcome to Connect. Thanks for sharing your mom’s journey with the group, as I feel other members might be able to relate. I can only imagine how frightening and frustrating all of this must be. I’m including some information from Mayo Clinic on aortic aneurysms: http://mayocl.in/28UWOka. I’m also tagging a few Connect members who have discussed this condition, @plj44 and @jessicalatessa.

@mlan68, have you considered getting a second opinion with the latest notes? Please keep the group posted on how she’s doing.

Liked by mlane68

That’s what I’m in the process of. I considered the Mayo Clinic and have an appointment request form that I am filling out. However, if I could stay closer to home which is North Georgia it would be better. I need opinions on places like Emory or St. Josephs which is in Atlanta unless the Mayo has a more advanced testing, etc. option. No drive is too far to help mom. Anybody know of any places to start since I want to be sure I choose the best facility for her conditions. Since there are multiple conditions one may fit better than another would.

Consumer Reports has some information on choosing a top hospital that might be helpful in your research:
http://www.consumerreports.org/cro/news/2014/08/six-tips-for-choosing-the-right-hospital-for-surgery/index.htm
http://www.consumerreports.org/cro/2013/01/how-to-choose-a-hospital/index.htm

There’s also sites like HealthGrades or ZocDoc for physician reviews or even Castle Connolly’s Top Doctors. They are all free and reading reviews from others may help.

Hi @mlan68,
I wanted to add my welcome to you as well. When caring for my father, I recommended my mother always ask to copies of tests and reports. During his journey with cancer, I was surprised how often her trusty binder became the source that team members turned to to verify things (medications, test results, etc.) especially when transitioning from one point of care to another. You were wise to have gathered this information. I’m sorry that you discovered things you wish you had been told. You mother has a multiple complex issues and seeking out the best is very wise.

@caretothepeople offered some great resources for finding care facilities. I will also point out that several hospitals, including some in Georgia and nearby, are part of the Mayo Clinic Care Network. See the listing here http://www.mayoclinic.org/about-mayo-clinic/care-network/members Mayo Clinic Care Network members share Mayo Clinic’s patient-centered culture and commitment to improving the delivery of health care. Potential members go through a thorough evaluation, including a review process that includes overview and site visits.

You may also wish to read this thread https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm-2b62d0/ and connect with @janetpomponio and @elsinann.

How is your mom doing today?

@colleenyoung

Hi @mlan68,
I wanted to add my welcome to you as well. When caring for my father, I recommended my mother always ask to copies of tests and reports. During his journey with cancer, I was surprised how often her trusty binder became the source that team members turned to to verify things (medications, test results, etc.) especially when transitioning from one point of care to another. You were wise to have gathered this information. I’m sorry that you discovered things you wish you had been told. You mother has a multiple complex issues and seeking out the best is very wise.

@caretothepeople offered some great resources for finding care facilities. I will also point out that several hospitals, including some in Georgia and nearby, are part of the Mayo Clinic Care Network. See the listing here http://www.mayoclinic.org/about-mayo-clinic/care-network/members Mayo Clinic Care Network members share Mayo Clinic’s patient-centered culture and commitment to improving the delivery of health care. Potential members go through a thorough evaluation, including a review process that includes overview and site visits.

You may also wish to read this thread https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm-2b62d0/ and connect with @janetpomponio and @elsinann.

How is your mom doing today?

Jump to this post

Thanks Collen, Mom is still struggling with recovering. She gets tired quickly and you can hear it in her voice when you call. She’s still not back to doing the things she once loved and I’m so ready to have her back with us. She gets joy out of having the great grand kids over so thank goodness for summer. I want to thank you all so much, it helps to have all this input as I am at a loss for the best route to take. I don’t know if I should carry her back to her current surgeon while I continue to look for a better place to get her or what. I’m so scared that she’s going to be gone before I can find the right doctor.

I need to retrieve the medical records from her other visits along with some of the lab work for the last one. I plan to do that this week. I would like to know also if there’s anywhere that any of you know of that I can find any and all complications that could result from the AAA repair. The notes that I’m looking at now seem to hint at the cause of her current issues being a result of the surgery. What’s disturbing is they have yet to figure out what is going on with her and causing her abdominal pain that radiates to her back and the nausea that occurs with it. From what I’ve researched, her symptoms point to either Aortic Aneurysm or an autoimmune disorder or TB. She began with this cold that kept growing until she couldn’t breathe and was finally diagnosed with pneumonia and COPD. Her lungs were covered with these places on the CT scan they did. That’s how they found the AAA.

I appreciate all the input and info you all can manage to donate.

@caretothepeople

Consumer Reports has some information on choosing a top hospital that might be helpful in your research:
http://www.consumerreports.org/cro/news/2014/08/six-tips-for-choosing-the-right-hospital-for-surgery/index.htm
http://www.consumerreports.org/cro/2013/01/how-to-choose-a-hospital/index.htm

There’s also sites like HealthGrades or ZocDoc for physician reviews or even Castle Connolly’s Top Doctors. They are all free and reading reviews from others may help.

Jump to this post

That is perfect care, thanks so much.

@colleenyoung

Hi @mlan68,
I wanted to add my welcome to you as well. When caring for my father, I recommended my mother always ask to copies of tests and reports. During his journey with cancer, I was surprised how often her trusty binder became the source that team members turned to to verify things (medications, test results, etc.) especially when transitioning from one point of care to another. You were wise to have gathered this information. I’m sorry that you discovered things you wish you had been told. You mother has a multiple complex issues and seeking out the best is very wise.

@caretothepeople offered some great resources for finding care facilities. I will also point out that several hospitals, including some in Georgia and nearby, are part of the Mayo Clinic Care Network. See the listing here http://www.mayoclinic.org/about-mayo-clinic/care-network/members Mayo Clinic Care Network members share Mayo Clinic’s patient-centered culture and commitment to improving the delivery of health care. Potential members go through a thorough evaluation, including a review process that includes overview and site visits.

You may also wish to read this thread https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm-2b62d0/ and connect with @janetpomponio and @elsinann.

How is your mom doing today?

Jump to this post

I found this in-depth patient information on Abdominal aortic aneurysm (Beyond the Basics) from Wolters Kluwer “UpToDate” website http://www.uptodate.com/contents/abdominal-aortic-aneurysm-beyond-the-basics#H17517696. Here are some excerpts:

“Surgical risk. The risk of surgery varies for each individual and the magnitude of risk may be estimated. Patients whose surgical risk is estimated to be high may do better with watchful waiting or less invasive aneurysm repair. … Surgery of any kind carries certain risks that vary from one person to another, depending upon the patient’s general state of health. The surgical risk for repair of AAA increases with age and the presence of other health conditions. As examples, people who have other heart or lung diseases, and people who smoke are more likely to develop complications such as pneumonia and irregularities in their heart rates after surgery. In addition, older adults are more prone to develop problems (such as cardiac events and stroke) both during and after surgery.”

Good luck with your research @mlan68. Our bodies are complex and when we have multiple conditions, it can be challenging to find answers with one specialist. It sounds like your mom has a team of people working with you both. Are you able to share your findings and suspicions with them?

@colleenyoung

Hi @mlan68,
I wanted to add my welcome to you as well. When caring for my father, I recommended my mother always ask to copies of tests and reports. During his journey with cancer, I was surprised how often her trusty binder became the source that team members turned to to verify things (medications, test results, etc.) especially when transitioning from one point of care to another. You were wise to have gathered this information. I’m sorry that you discovered things you wish you had been told. You mother has a multiple complex issues and seeking out the best is very wise.

@caretothepeople offered some great resources for finding care facilities. I will also point out that several hospitals, including some in Georgia and nearby, are part of the Mayo Clinic Care Network. See the listing here http://www.mayoclinic.org/about-mayo-clinic/care-network/members Mayo Clinic Care Network members share Mayo Clinic’s patient-centered culture and commitment to improving the delivery of health care. Potential members go through a thorough evaluation, including a review process that includes overview and site visits.

You may also wish to read this thread https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm-2b62d0/ and connect with @janetpomponio and @elsinann.

How is your mom doing today?

Jump to this post

Thanks @colleenyoung, there are a couple of doctors with notes that really seemed to be trying to figure out what was up with her pain, vomiting and nausea, etc. However, my problem with the whole scenario is this:

1. It was communicated about the renal infarction, then after admittance, another doctor said it wasn’t so and her kidney was fine.
2. The 2nd aneurysm was mentioned only briefly by one doctor.
3.Acute renal failure was never mentioned.
4. The 4th trip there, there was a mention of her kidney being inflammed and the infarction was found then yet nothing mentioned. We are on the 6th trip here.
5. No mention of the 2 valve regurgitations.
6. No mention of Basilar atelectasis (partial lung collapse)
And more, also that some of these are usually caused by surgery of this type.

Also, when the vascular surgeon was informing her of the surgery he was doing, there was never any mention of any possible complications before the procedure just that she would be able to live a full life afterwards.

Come to think of it, when she was informed of the 2nd aneurysm the doctor (not the vascular surgeon) did say that it was so close to the kidney it would be dangerous to operate and she should follow up with surgeon after released from hospital. Then when she’s released her doctor says to bring her back in 3 months for a check up. It is as if he had no clue about the 2nd one.

So do you see my frustration here? C diff was blamed for this last trip as well stating a colonoscopy showed irritation and swelling in her colon and the c diff test came back positive again. She may be a carrier now, who knows since they found it on the trip prior to this one. They had sent her bloodwork to the Mayo Clinic for labs and she was released before we heard anything from that.

The medical records are quite expensive at 1.00 per page. Is there anyone that can tell me what the most important ones would be so that I may afford records from her previous visits? I only got the doctors notes and the CT scan results for this last trip and it was 30 pages. I’m sure that lab results would be an item on the important list but besides the notes from the doctor and lab I’m not sure what would be most helpful to me.

Liked by jms7

I am praying for you and your mom! I cannot even imagine this!

@jms7

I am praying for you and your mom! I cannot even imagine this!

Jump to this post

Thanks @jms7 She goes tomorrow to another vascular surgeon and I hope all will begin healing.

I’m so happy you updated – please know you are both in my prayers!!!

Hi @mlan68. Just checking in. How are you and your mom doing? How did the meeting with the vascular surgeon go earlier this month?

Liked by jms7

Thanks for asking @colleenyoung it went great. It turns out the dr. at the emergency room read the films incorrectly. The second opinion surgeon says that it’s just swelling that will take approximately a year to completely go back to normal. He says it’s a process and everything looks great.

She is however, still experiencing nausea and vomiting so the gastro doc is the next stop.

@jms7

I’m so happy you updated – please know you are both in my prayers!!!

Jump to this post

Thanks @jms7, looks like those prayers have worked for the major ailment anyway. Thanks so much, the support of all you here is indescribable. We here are fortunate to have you all.

@jms7

I’m so happy you updated – please know you are both in my prayers!!!

Jump to this post

I am so awed and have good tears I actually got out of bed to write you. I’m so so happy to hear this. Yes support and prayer of others is so powerful. When we turn to others even in a setting like this it says we are worth healing and prayers from total strangers. How great is it that tonight I spoke to a large church women’s group on the heart and what it needs;spiritually, emotionally, etc. Please do keep updating; those of us who have major health issues have the compassion that others don’t have in the same way. Sending you joy and good prayers for continued strength : )

Liked by Jen, DogMamaT

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