Early tissue valve failure. Anyone else? (Also have complex issues w/ meds.)

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Catie

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Jun 17, 2010
Messages
221
Location
Texas, USA
Thanks, you all. It helps to get your reactions. I actually drove an hour to see him. Believe it or not, he has a phenomenal reputation in this area.

I really miss the cardiologist I had up north for many years. Since moving to Texas I've already fled the "care" of two other cardiologists closer by. One insisted I did not need prophylactic antibiotic for dental cleaningswith a bioprosthetic valve, when of course I do. The other urged me not to get the surgery because, "that's a terrible surgery." Sheesh.
 

Protimenow

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Aug 10, 2010
Messages
2,835
Location
California
That doctor has an interesting sense of humor. (I suspect that removing and replacing the valve may be almost as revealing as an autopsy - but I guess it's not quite as funny).

You should have offered him a prostate exam with a poorly lubed fist....
 

Catie

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Joined
Jun 17, 2010
Messages
221
Location
Texas, USA
Thanks, guys!

My PC went belly up, so haven't spent much time here. Can set up refurb tonight. No new progress on cardio & gastro issues except to research specialists who are in-network. Need to organize stacks of med. records & prepare questions and histories and schedule appts. Urgh.

Pellicle, you asked re: CC and Mayo. Unfortunately, I no longer have the same insurance. Original valve surgery was at CC and surgeon and aftercare were stellar, but there also were some crazy-making experiences.

They refused--refused!--to allow me to schedule a gastro workup while I was there for testing, appts. and surgery. I begged. They were #2 in the country for gastroenterology. Nope. And the gastroenterologist they did allow me to see on a pre-surgery consult--her assistant blew the appointment by insisting on typing my long list of problem meds into their system, leaving a snippet of time to meet with the doctor. After reviewing my records, this young doc uttered the same phrase over and over: "We have no plan for you."

As for the CC cardiologist they put me with. Someone had deleted my cardio appt and we had to scramble to get me in with someone before my op. They tossed me to a heart-failure specialist. That dr. spent 45 minutes going over statistics from the web and trying to convince me that my valve wasn't bad enough to need surgery....which I was scheduled for two days later. I told her I planned to ignore her advice in favor of the three surgeons who said my aneurysm was at the tipping point. My valve turned out to be worse than anticipated when replaced.

All doctors are not created equal. :(
 

Iggy

Member
Joined
Sep 14, 2019
Messages
9
Hi Catie,
I'm sorry to hear that you have to deal with this so soon.

I had my valve repaired in 10 months ago that has failed and am now facing a redo operation soon. I understand your anxiety.
I have had a history of GI problems, GERD, hiatal hernia, GI bleed from misdiagnosed duodenal ulcer. So choosing a valve is a big question for me. My stomach is also very sensitive, especially to antibiotics. Once a GI doctor recommended swimming and I could not agree more. It helped me a lot with my respiratory diseases and definitely with hernia/GERD(doctors can't say exactly which one I have, but I tend to think it's the hernia, since I agree with Paleowoman with the acid in our stomach). I have not been on PPI for a few years now, and refused to take them. Good diet, less coffee(I should quit really) and swimming all that works for me. Anxiety can also worsen hernia symptoms; Ive been anxious and nervous about my upcoming surgery and this whole situation, and that has affected my stomach as well.
 

LoveMyBraveHeart

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Joined
Aug 6, 2019
Messages
90
Location
USA
Hi Catie,
I'm sorry to hear that you have to deal with this so soon.

I had my valve repaired in 10 months ago that has failed and am now facing a redo operation soon. I understand your anxiety.
I have had a history of GI problems, GERD, hiatal hernia, GI bleed from misdiagnosed duodenal ulcer. So choosing a valve is a big question for me. My stomach is also very sensitive, especially to antibiotics. Once a GI doctor recommended swimming and I could not agree more. It helped me a lot with my respiratory diseases and definitely with hernia/GERD(doctors can't say exactly which one I have, but I tend to think it's the hernia, since I agree with Paleowoman with the acid in our stomach). I have not been on PPI for a few years now, and refused to take them. Good diet, less coffee(I should quit really) and swimming all that works for me. Anxiety can also worsen hernia symptoms; Ive been anxious and nervous about my upcoming surgery and this whole situation, and that has affected my stomach as well.
If you don't mind my asking, what are your symptoms when you have flare ups? We have a cardio appointment in a couple weeks, and Mathias has been gagging daily, and vomiting almost daily and I am wondering if it's a hernia. He has no other symptoms, just gets nauseous and starts gagging/vomiting. We thought it was due to a cough from his medication, but he has been off of that for over a week now, and the gagging/vomiting no longer comes with a cough, it just happens. Thank you in advance.
 

Catie

Well-known member
Joined
Jun 17, 2010
Messages
221
Location
Texas, USA
Hi all,

Pellicle, while I was on the topic of frustrating docs, and you had asked me about Cleveland Clinic, I was relating two experiences with doctors they assigned to me in 2016.

Thanks, jlcsn2015. I'll be finding my way, for sure.

Iggy, I'm so sorry! Just ten months later to be looking at a new valve is outrageous. I have no doubt you're anxious about it all. I'm sorry, too, that you suffer with the gastro issues. Some websites list stomach irritation as a side effect for warfarin, but I wonder how rare that may be. It certainly bothered me the few weeks I was on it, but a plethora of meds/supplements do. Perhaps your surgeon would be willing to give you a trial with it, in light of your sensitivity. Also, that is wild and wonderful about the swimming helping you so much!

LoveMyBraveHeart, I hate to hear that Mathias is struggling with frequent gagging and vomiting. I hope they can figure out what's going on and get him relief soon! I realize you directed your question to Iggy, but for what it's worth, when I have a flare up, I experience burning high up--near my diaphragm-- when my stomach empties. Longstanding hiatal hernia and history of GERD. Also some gastritis/esophagitis in the past.
 

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