Catie's Journal

Received call from cardiologist's office today, letting me know yesterday's echo shows moderate aortic stenosis and that my cardiologist believes it will be time to replace my valve again in a year. I knew tissue can fail early, but I'm shocked nonetheless, since last year's echo was great. My case is complicated by issues gastroenterologists haven't been able to solve. I have a page-long list of medications and supplements that cause stomach/esophageal burning (even topical ones). Importantly, baby aspirin and warfarin both irritate my stomach. I dearly hope we can find a way to overcome this, because now I'd far prefer a mechanical valve next round. Have appt w/ cardio dr. tomorrow.

Has anyone else had their sneezing change since OHS? Ever since my surgery, when I sneeze, I really SNEEZE! I've always had healthy, serial sneezes, usually 5-8 in a row, never just one. But the sneezes feel sooooo much stronger and more intense.

Late this morning I saw that a cuticle on one of my big toes showed signs of infection. It's very minor, but as soon as I completed a scheduled appointment, I boogied over to urgent care to get it seen. After explaining that I have a prosthetic heart valve, I asked the physician whether I did the right thing, seeing her ASAP to secure an antibiotic, and she replied, "Absolutely." She prescribed 10 days of Clindamycin and said if it worsened to return promptly. I've understood that at the first sign of bacterial infection, we should take action but this is the first time I've needed to since my surgery. I'm sure most people are aware, but thought it wouldn't hurt to post, since anyone who's had a valve replaced is at higher risk for endocarditis. I've quoted a small portion of the Mayo Clinic's endocarditis web page, where they discuss prevention: "Prevention You can help prevent endocarditis in several ways, including: Know the signs and symptoms of endocarditis. See your doctor immediately if you develop any signs or symptoms, especially a fever that won't go away, unexplained fatigue, any type of skin infection, or open cuts or sores that don't heal properly. Pay special attention to your dental health — brush and floss your teeth and gums often, and have regular dental checkups. Avoid procedures that may lead to skin infections, such as body piercings or tattoos."

I'm having a colonoscopy next week. All the prep solutions' literature warns of afib as a possible side effect. Having had post-operative afib last year and learning that there are patients whose afib started on the heels of a colonoscopy, this makes me nervous. I reallllly don't want it back! Was anyone given special instructions or recommendations to help prevent arrhythmia as a side effect of their colonoscopy?

When I saw my cardiologist yesterday, he scheduled me for another echo in six months. But he said once that appointment is over, he would have me follow up every one to two years. Two years sounds like a long time between checkups. Once your valve was replaced, how often have you been seen? I have a tissue valve.

I'm still taking 12.5 mg of extended release Metoprolol each day. Examples of typical blood pressure readings for me are 83/50 late a.m. 88/54 late in evening. It can go some higher but even unmedicated I've always run low. No dizziness, etc. But does anyone have any insight as to why I'm supposed to keep taking a beta blocker and keep BP so artificially low? I had too many other questions and didn't get to ask this at my last appt.

I saw my cardiologist yesterday. He and I went round and round when I asked for a script for antibiotic to take before I have my teeth cleaned. He said that no, I didn't need it. I said, yes, I do. He finally agreed to prescribe, but he clearly thought I was being over the top. He believes only patients with mechanical valves need to pretreat. I've understood for a very long time that I would need prophylactic antibiotic for each dental visit the rest of my life with a bovine valve--that all prosthetic valves require it. That's how I read the guidelines. Am I wrong?

Topics: Afib (March 6), aortic aneurysm management & surgery (March 7), and heart valve disease and treatment (April 27). If you register, you can submit questions in advance and also during the live chat. If you can't attend, they make the transcripts available afterward. These can be very informative. Scroll down to see the list of upcoming chats. http://chat.clevelandclinic.org/default.aspx?utm_campaign=webchats-url&utm_medium=offline&utm_source=redirect

Would appreciate some feedback. Our cardiac rehab staff were conservative where heart rate was concerned. They wouldn't let anyone go above 30 beats per minute higher than our resting heart rates. With my resting heart rate being in the 50s, They'd slow me down if mine crept over 90. Saw cardiologist today and asked him about HR while working out, now that I'm on my own. (Ins. changed; stopped rehab 12/30. They felt I had accomplished enough.) Cardiologist used the old formula: 200 minus age = upper threshold HR. I'm 58 and he's saying 135-140. I think the cardiac rehab manager would choke and spit out her coffee to hear that--they'd said to continue in the same vein as in rehab. Once you were released to do your own workouts, did the rules all change, or were you as cautious as you were while supervised? Was there a slow, gradual increase in intensity? Just trying to find my way.

They clipped mine at skin level in the hospital. I remember thinking, "That looks like trouble." The last couple weeks, every step I take, that area hurts. It hurts more to bend my torso in certain directions and to tie my sneakers. I'm sure it's nothing harmful, but I don't like the discomfort. I'm overdue for an update and will write one soon. I kept waiting for issues to resolve...

Called Cleveland. Nurse said to call 911. In yet another ER. Have had very slow and erratic heart rate. 30s. but now higher in ER. i'm so frustrated from having back to back issues. I guess afib is back too.

I saw my local cardiologist today. His reputation is superb and people drive for miles to see him. He said we have to change the way I'm being medicated for the afib immediately. Described several potential catastrophic outcomes. The report from the Holter monitor I wore earlier in the week isn't available yet. I'm feeling emotional whiplash to think CC medicated me in a way that he reacted so strongly to. HR was perilously low. Had been very low in Cleveland but they said don't worry about it unless you feel faint or something. He is less worried about the afib. All this scares the hooey out of me. Also, I've had at least 6-7 people look at my arm where it became infected from a poorly placed IV in the hospital. It still hurts very much. He instantly diagnosed a clot. Showed me right where it is, identified it by sight and feel. At least that explains why I'm still struggling.

Two nights with tons of palpitations for hours convinced me to get checked out. It apparently wasn't afib today, which is good. But they sent me home with a Holter monitor for 24 hours to try and capture what's going on. While there, they did ultrasound of my right arm where there's been cellulitis from a bad IV to rule out any clots. My local cardiologist couldn't see me till Nov. 1, but a staffer worked me in, so I'll go Thursday. Thursday is also when I step down from 400 mg to 200 mg of Amiodarone. A bit nervous to make any changes.

After my 2nd ambulance ride to the CC ER in two days, they decided to keep me overnight and observe me; give me an MRI and some physical neurological tests repeatedly; I was soooo glad to be released after confinement. I have an infection (cellulitis) from a badly placed IV and they administered IV antibiotics for that in the emergency area three times, due to my extremely sensitive-to-meds stomach. But upon release, now for the first time in years and years I'm having to take oral antibiotics and I'm suffering a good deal of tummy pain. I need to see whether my GP or someone will help me get this turned from oral to infused antibiotic so I don't damage my stomach/esophagus lining. But thankfully--oh so thankfully--I was able to catch the next flight. And I am HOME!! (finally) They changed my metoprolol to the extended release variety for the afib.

I was just about to meet with the electrophysiologist, when the field of vision in my right eye turned white. I could barely see anything out of that eye for about 3-4 min. They insisted on another ambulance ride to ER. I was just here yesterday! Vision is fine now but they have to evaluate me. I really really wanted to see about getting the arrhythmia under control today. I want to screech...

Tues around 3 am I had to take an ambulance ride to the ER. EMTs said it was afib, ER said it was another form of arrhythmia. Missed my 2nd scheduled flight home. Heart has gone wonky again before the next two scheduled (8 hrs) doses of metoprolole, episodes lasting 1.5 hrs. Still up in wee hours Wednesday waiting for things to get calmer. Seeing rhythm specialist this morning, electrophysiologist. Due to start lower dose of amiodorine tomorrow. I need all this to come under better control so I can fly home. i don't want an incident in the air.

Friday, they boosted my beta blocker (metoprolol) from two to three doses a day. I checked my heart rate tonight shortly before I was to have my 3rd dose, and it was 58 bpm. Called and was eventually put through to a dr, who said to skip the 3rd dose today, to keep the rate from going too low. I readily agreed, but at 2 a day, I'd gone back into afib Friday. Does anyone know, is it tough to find a balance for the right cocktail of meds? I get tested and seen again tomorrow.

I'm coming along, for sure. Have been navigating few bumps in the road. I'm still in Cleveland and grateful to be in the hotel, not the hospital. At CC, I was scheduled to meet my surgeon the afternoon before my surgery the next day. Turned out he was working on someone's 5th OHS and the day ran long. By the time he met me, it was very late, and two other families were waiting to see him. So time with him was abbreviated. I was completely thrown by him telling me he planned to do a procedure I'd never heard of (aortoplasty) instead of replacing the diseased portion of my aorta with a dacron graft. With the aortoplasty, there was a possibility the aortic aneurysm could return. But I had to sign and go! I managed to reach a heart brother from Mended Hearts by phone, who tried to peel me off the ceiling. Went to hospital early and told nurse I was uncomfortable with the procedure he planned and needed to speak w/ surgeon briefly before my op. Several hours later he found me in preop and readily agreed to approach my case the classic way. He later told me he couldn't have done the aortoplasty on me b/c of the condition of my aorta. Worst part of ICU for me was where a chest tube hit my upper right side and caused excruciating pain. I think nurses acted as soon as they could to get the thing out of me, but the area remained inflamed/painful till yesterday. I also fought nausea the entire hospital stay. Not medicine, but positional, the food, and climate control. Ended up with fluid in the lining of both lungs and pleurisy. They drained the right one. I was in ICU three days because afib showed up. Still hoping and praying to completely transition out of it, but I've now had three episodes, one of which was yesterday. We spent all day working on and around that issue. Three EKGs. I'm on the cocktail of meds and of course, warfarin, the drug that the cardiologists and surgeons all preferred to steer me clear of because of my severe gastric struggles. At the tail end of the day yesterday after this latest afib incident and was treated, it was agreed for me to cancel my flight home today and stay at the hotel this weekend and for us to repeat all tests Monday and have me see a cardiac NP again. I'm under orders to zoom to CC ER if it cranks up again. Same plan once I'm released home--zoom to GP or if not their business hours, get urgent ride or ambulance to ER. I wasn't expecting all that froo froo. *sigh* Things seem more controlled today after they upped my beta blocker. Lord, may that please continue.

Been wanting to post someplace besides on a phone, so I'll save details for another time. But many thanks to heart friends for support and prayers. Successful surgery, some complications. Not sure I'll get to fly tomorrow as was planned --till this morning it looked like it was gonna work out. Was released from hospital to hotel Wednesday. Will try to update more soon.

Met with gastroenterologist today. A chunk of the appointment time got burned up by someone that insisted on keying into the computer a long list with two fingers. Then they had to chase down the records that I mailed weeks ago, but I learned were missing last week, so I'd ensured they were faxed a few days ago. I had tried from TX to secure two gastro appts, one for perioperative GI issues and one for the overarching stomach problems, but that had not been permitted. Dr had never seen anyone with the issues I have with medications. (A page-long list of meds cause stomach burning.) "We have no plan for you," was said several times. If I am given necessary heart medications that worsen my stomach symptoms, they could consider putting a J tube into small intestine, ordinarily used for feeding, but in my case, it would be for medication only. However, she said, those can cause numerous complications. I pray I don't need medications that bring me harm, so that it doesn't come to that. There actually was quite a bit more that caused me chagrine, but that's enough of the flavor of things. *sigh*

I'm flying to Cleveland Clinic Sunday for appointments and surgery, and I will be there on my own--no friends or family to accompany me. I hope I have planned well. Does anyone have recommendations or tips that you think might be helpful to me?

Does anybody know why some full sternotomies seem to start almost right under the chin (very high up) and other incisions start lower down? My surgery unfortunately won't be minimally invasive and I've been wondering why the location of the scars seems to vary from person to person.

I'm scared of the catheterization. Unfortunately, I'm a very high anxiety person, even at the best of times and I can't take medication for it. I realize complications are rare, but somehow that doesn't soothe my fears. This may be irrational, but I'm scared they'll make the aneurysm dissect. Also, I had two caths in my teens in the 70s, soon after the bicuspid valve was dx'ed. They did the old cutdown version at the brachial artery and I remember feeling the catheters bumping around my heart making it beat wildly & out of sync. No one told me I was okay, I was young, and these experiences terrified me.

My journey toward surgery keeps getting hampered by issue after issue. Communication debacles, lack of a way to get important answers for weeks, various roadblocks, Murphy's Law. Today I was called by one surgeon to provide some answers and then unexpectedly just minutes later by the assistant of a different surgeon with apparently conflicting info. The second call caught me totally off guard and I became very anxious and confused and couldn't make out the name of who was calling and which surgeon she represented. I really botched the call, thinking that my records must have been sent to the wrong place in error. I later almost by accident found out what the call was intended to be about, and was heartsick over the misunderstanding. Tonight I sent a fax and email in hopes of getting things back on track. I asked for that assistant to please call me again. This is one day in a long series where things have not gone well or have gotten tangled up. I feel like I've been constantly trying to put out some kind of fire and advocate for my needs. I really, really hope things can get settled, so I can have some peace of mind and set a surgery date.

I wonder whether there's anyone else here who can't take aspirin or has stomach issues that may preclude taking warfarin. For years, I planned to get a mechanical valve when the time came, but now I don't know. A few years ago, I developed an incredibly sensitive stomach to medications. I have a long list of prescription and OTC drugs I can't tolerate (even Benadryl, cold tablets, and antibiotics all burn terribly.) I can't even take proton pump inhibitors anymore, the drugs that heal the stomach! There's also a history of gastric erosions, gastritis and esophagitis. When I met a surgeon this week, I was going to ask for a two-week trial on Coumadin, to see whether it would irritate my stomach. He was willing to give me a trial, but said since I've had erosions, he'd rather see me avoid anticoagulation, lest I ever get another one and have a catastrophic bleed. Since NSAIDS are contraindicated with my stomach history, he said he'd only keep me on baby aspirin for a month, if he implanted a tissue valve. That sounded good. But he said when the valve fails, we'd probably do TAVR. I didn't ask him about aspirin with TAVR during the visit, but now everywhere I look online, it says those valves require aspirin, Plavix, etc., and if you can't take things like that, you can't get a TAVR valve. I need an exit strategy once the tissue valve fails! I had a full GI workup last year with a "top doc" in our area, and he could not help with my stomach issues. The complexity and difficulty trying to solve this issue has been very stressful.

I did one of the long-distance consultations through Cleveland Clinic. The surgeon there said my aortic root is normal and doesn't need attention when I pursue surgery for aortic valve and aneurysm. A surgeon I met last week stated the root is enlarged and will need to be replaced. It's perplexing that they don't agree when they both referred to the same CT images. I wasn't expecting the diagnoses to conflict. I guess I need a tiebreaker--probably another consult. Anyone had something like this happen?