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Renal - Infrarenal Aortic Aneurysm

Aortic Aneurysms | Last Active: Oct 8, 2018 | Replies (22)

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@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?

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Replies to "Hi @mlan68, I wanted to add my welcome to you as well. When caring for my..."

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.

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?

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.