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Jen (@jurney01)

Celiac Artery Aneurysm: Anyone else with same illness?

Aortic Aneurysms | Last Active: Jul 29 5:12pm | Replies (429)

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@kanaazpereira

Hi @kdh1

I merged your post/question about, "How often should your surgeon have you in for a check." with this discussion which you joined so that members could reconnect with you , and perhaps share their thoughts. I noticed it's been almost a year since you had your surgery; how are you doing, @kdh1? We'd love to get an update.

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Replies to "Hi @kdh1 I merged your post/question about, "How often should your surgeon have you in for..."

My husband had been experiencing frequent UTIs over the past couple years, passing quite a bit of blood and large blood clots, so was referred by our primary care physician to a urologist. He had a CT scan with contrast on the 18th of May, and results were given to us by phone this past Monday, June 4–one day before my husband's 67th birthday. Unfortunately, he was found to have multiple cysts on his kidneys, consistent with polycystic kidney disease (PKD; genetic, as his maternal grandmother passed away from renal failure), as well as a "small" celiac artery aneurysm (they did not specify exact size), and enlarged prostate. My husband is scheduled for a return visit to the urologist on June 21, where he will have a cystoscopy, and a discussion of the CT results with the urologist. In terms of priority, is it prudent to receive a referral to a nephrologist first, or a vascular surgeon? We're in the Charlotte, NC area, so have fairly good resources locally. In addition, I have a good friend who has advanced PKD, and is awaiting a kidney transplant–she has been very supportive in terms of addressing questions associated with PKD, and sharing resources (the PKD Foundation is excellent, a resource she recommended utilizing), and offering the names of her nephrologists in a local practice, specializing in PKD treatment (still no cure, unfortunately). I also have a friend whose husband is a cardiac surgeon in a well-known heart and vascular surgery practice; her husband recommended a vascular surgeon in his practice with an excellent reputation for endovascular surgery and stent procedures. The problem is the rarity of the celiac artery aneurysm, which brings me to another question: does Mayo offer consultation to local vascular surgeons, or would a good vascular surgeon be up on the latest research? In addition, having PKD also raises the risk for intracranial aneurysms–another reason to consult with a vascular surgeon. We want to have all our questions lined up before the return visit to the urologist, but understand also that he may not have a lot of answers. It's a rather daunting journey ahead, but at least we have access to a good support network, and quality healthcare resources. For further background, aside from the UTI symptoms, my husband has not had any abdominal or flank pain, is active (walks at least 30 minutes daily), and is still working full-time. He has slightly elevated cholesterol levels, but can't take statins (muscle pain). He has fairly normal blood pressure–when taken manually at our primary care physician's office, that is; when a digital blood pressure cuff is used, however, it's always slightly elevated (e.g., at the urologist's office, it was 130/80). Obviously, keeping BP in check is a concern. He has a family history of cardiac disease–his mom died from complications of heart disease (had triple bypass surgery as a fifty-year-old), and was a heavy smoker. His father survived oral cancer, but later developed lung and esophageal cancer related to his pipe smoking. My husband is a non-smoker, thankfully.

Thank you in advance for any insights you might offer!

Helen, just be there for him..

I am doing great, I am glad I had the surgery. I don't know how long the repair on my aorta is suppose to last. He sewed it together with mess I think. It was 2 years last March. I did not realize until after the surgery how serious it was. Very thankful.

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