Sorta scheduled

[Catie]

Ack! So many unknowns. I *think* after a conversation with a nurse today, they're getting me scheduled. New surgeon's last date available in September.

Nurse mentioned he said my valve is borderline and he wants another echo. I know the numbers tipped into "severe" at the echo in June. There is no way he would not replace a severely stenotic valve, is there? Or one right at the line of severe?

He said aortic root is dilated, needs replacing. That agrees with what local doctors said. And of course take care of the aneurysm. It sounds complicated.

Both prior surgeons I conferred with said they would not want me to go mechanical because of my long-term gastric issues. They advocated for bio with a short round of aspirin and one offered 3 mos of Coumadin. I don't know how this dr. approaches anticoag/antiplatelet regimen for tissue. I recently gave myself a baby aspirin trial. At the 15-day mark, pain started and worsened the next two days, then I stopped. Figured I should save my stomach for the real deal.

Nurse expressed concern about my inability to take H2 Blockers and proton pump inhibitors. Said they usually administer them after surgery. I hear her. I'm nearly as worried about my stomach as my cardiac issues. The last gastro dr., though nice as pie and rated a top doc, had no answers for what to do when I would need to take medication. "Maybe try some probiotics?" he asked.

 

[Paleowoman]

Hi Catie - you must make sure the surgeon knows all your other health problems and takes them seriously, even your inability to take H2 blockers and proton pump inhibitors, and aspirin. Aspriin is a very well known stomach irritant and anyone with prior ulcer problems, for example, of which there must be very many people, is expressly told never to take it so they must have an alternative to that. I was put on a proton pump inhibitor immediately post surgery - seems to be the standard thing to do - which I wasn't at all happy about and complained, cardiac doc said I could stop after a week and, in fact, my GP said I could change to Gaviscon Advance (which isn't systemic) and doesn't cause me a problem. Woe is anyone whose surgeon disregards their other health issues, no matter how trivial. We had an unfortunate member here who had/has serious problems since surgery due to no one looking into a health problem she had prior to surgery.

 

[Catie]

Thanks for all you shared, Paleogirl. I appreciate your mentioning Gaviscon Advance. I looked, and it is available and has rave reviews on Amazon.

Thank you for saying to persevere. I feel like I've been relentlessly trying to communicate, get definitive answers and also advocate for myself and in particular for my stomach. I feel like I've been pushy but also don't think I have a choice. It seems like people don't hear, don't tune in, don't take things seriously sometimes. I've done faxes, calls and emails this week on this topic and I'm going to send a clarifying email before I go to sleep. It can be frustrating and very stressful, but as I said to a nurse on a voicemail this morning, I have to make certain things known up front because I know exactly how bad my stomach can get if I ingest something that inflames it.

On a side note, but a concerning one, I wish TAVR valves didn't require antiplatelet medication. Because they do, it sounds like that can't be a safety net for me in the future. Surgeons talk like TAVR is "the" solution, but Aspirin, Plavix and Ticlid all irritate the stomach. That's scaring me, in needing to get a bio valve, since it has been recommended that I avoid Coumadin.

 

[Agian]

Nurse expressed concern about my inability to take H2 Blockers and proton pump inhibitors.

Why can't you take them?
PS Have you spoken to a gastro?

 

[Catie]

Since 2010 nearly every medication burns my stomach, including most PPIs. I took Prevacid for years, but I almost never figured out that it was causing extreme burning in 2010/2011. H2 Blockers and Nexium give me headaches; I've tried all. I can take Aciphex for a few days till neurological side effects kick in.

EGD in 2011 and another one in 2015. The "top doc" gastroenterologist I saw last year who did the upper endoscopy and with whom I discussed my issues had no answers. I have a page full of medication I can't take, from cold tabs to sleep meds to OTC supplements. My GP knows that if I ever need a course of antibiotics I'll have to be IV infused.

 

[Paleowoman]

Thanks for all you shared, Paleogirl. I appreciate your mentioning Gaviscon Advance. I looked, and it is available and has rave reviews on Amazon.

You can get Gaviscon Advance on prescription. It was what used to be prescribed years ago before PPIs and H2 blockers were invented. It's specifically to stop reflux so is very helpful when a person has a hiatus hernia (which I did, I also had duodenal ulcer back then). I've no idea why they prescribe PPIs post heart surgery - maybe one day someone can explain that - PPIs lower stomach acid, they don't stop reflux, you simply get an alkaline reflux, but Gaviscon Advance helps stop reflux and without affecting stomach acid too much. People need their stomach acid, we aren't meant to not have it. Very few people produce too much stomach acid, in fact a lot of people have too little and then get painful indigestion ! (My dad had a duodenal ulcer all his life - he loved it when H2 blockers came out - no idea why because he burped his way through life both before and after taking H2 blockers till the end - he wouldn't take antibiotics to cure him of his ulcer which is now known to be caused by H Pylori bacteria - I took the antibiotic treatment, cured the ulcer in two weeks - but all that is another story and one reason I personally stopped PPIs asap post heart surgery - you know H pylori bacteria thrive in a low acid environment !)

 

[Paleowoman]

Thank you for saying to persevere. I feel like I've been relentlessly trying to communicate, get definitive answers and also advocate for myself and in particular for my stomach. I feel like I've been pushy but also don't think I have a choice. It seems like people don't hear, don't tune in, don't take things seriously sometimes..

Stay pushy if you have the stamina. When I have a re-do I will be more pushy than I was. Prior to AVR I had to fill in a long form detailing all my other medical conditions and all the meds I take. A week before admission I had an interview with one of the cardiac nurses and again went through all the conditions and meds I take. I handed in reports from all my other consultants. On admission I had to hand over all my meds and the couple of supplements I take. The idea was that these were then handed over to me at appropriate times. The cardiac nurse on admission thought I was being over controlling and that I should learn to trust. Well, they gave me the wrong inhaler for my lung issue - result was that I got pleural effusions. They gave me my diabetes meds at the wrong times of day. And when I developed a urinary tract infection they didn't give me the antibiotics at the right times of day. That's what trust got me. I did tell them what they were geting wrong but I could tell that they didn't like me interfereing - at one point my endo and cardiologist interfered on my behalf, near the end of my stay though !

 

[Catie]

Just saw your posts, Paleogirl. I am soooo sorry you had such a debacle with your meds at the hospital. How super-frustrating, not to mention dangerous for you!

Trusting does not come easily for me, not at all.

Good to know that Gaviscon Advance can be prescribed. I had no idea and I should call and check with a couple of local pharmacies. I think I'll take a bottle with me when I fly out for surgery, so I could at least use it at post-op the hotel, if things flare up.

Yeah, I have a hiatal hernia also. Had h pylori in 2011 but the gastroenterologist did not believe it was the cause of my symptoms and as badly as I was already suffering, we did not purse the antibiotic regimen. No h pylori were found in 2015 upper endoscopy.

******************
An online search confirms what I thought I found a day or two ago. Gaviscon is a different formula in the US, different manufacturer and the only way to get the UK version is to order from someone who has imported it. Still, I'm glad there are ways to buy it. Ebay and Amazon, among them.

 

[Paleowoman]

Just saw your posts, Paleogirl. I am soooo sorry you had such a debacle with your meds at the hospital. How super-frustrating, not to mention dangerous for you!

Subsequently I wrote a formal letter of complaint to the hospital and received an apology, but I was none too happy as the hospital has an excellent reputation.

Re the Gaviscon Advance - would be a good idea to check if you're okay with it before surgery too. Strange that the US one is different from the UK one, I see the US one doesn't have enough sodium alginate in it and that is the important ingredient in this stuff ! Good that Amazon stock it though.

 

[Catie]

The surgery is way stressful enough without something so basic as medicating you properly going off the rails. That's a crime.

 

[Catie]

Thank you, Paleogirl! I will definitely try some ahead of my surgery. Good, good tips and I appreciate you!

 

[Twobike]

Looked it up on Amazon. Which works best, Liquid or chewable tablets?

 

[Paleowoman]

Whenever I've had it prescribed it's been the liquid one. It's very soothing for the oesophagus too as it's very thick (aniseed is a nice flavour). But looking at Gaviscon's website and also at the emedicines guide it seems to be availalbe in either form and 5mi liquid gives the same amount of sodium alginate as one tablet.

 

[Catie]

I am having a terrible time with Cleveland Clinic. TERRIBLE. Issue after issue, roadblocks, poor communication, conflicting information. This has gone on for weeks. I'm still trying to resolve things with a scheduled catheterization. A nurse yesterday said I have to have someone with me for 24 hours after their cath--entirely different story than I received the week before, that I just needed someone to escort me out and transport me, like you'd do with a colonoscopy.

The latest is, they won't give me the kind of appointment that I need and requested July 29 with a gastroenterologist. They have me seeing a very young doctor for a consult solely focused on my gastro issues related to surgery & post op meds. But because CC is #2 in the nation for gastroenterology, I wanted to see an established physician about the over-arching issue of an extraordinarily sensitive stomach and inability to take almost any medication. No one I've seen in the past has ever heard of anyone with my issues. I have a flareup of esophagitis from the enteric coated baby aspirin trial I did 2-3 weeks ago. I'm not going to even be able to do the two weeks of aspirin again after the op.

It's all been very very frustrating and stressful.

Paleogirl, I received the G A tablets yesterday. Will try soon.

 

[carolinemc]

Catei, with the cath, they do not want you to be alone and not move around. It could be they do things different. I was surprised when I had one as a adult. I always was in the hospital for three day total as a child. I am so sorry you are having so much trouble being proavtive for you heart health. It does cause undue stress that you do not need. I hope the mess is cleaned up soon and you can relax with what needs to be done. Hang in there. We are all here for you, honey. Hugs for today.

 

[carolinemc]

Catei, with the cath, they do not want you to be alone and not move around. It could be they do things different. I was surprised when I had one as a adult. I always was in the hospital for three day total as a child. I am so sorry you are having so much trouble being proavtive for you heart health. It does cause undue stress that you do not need. I hope the mess is cleaned up soon and you can relax with what needs to be done. Hang in there. We are all here for you, honey. Hugs for today.

 

[Catie]

Caroline, I very much appreciate your kind words and taking the time to post to me. It was very encouraging to come here and find your message and hugs.

-Catie