Jean's Journal

Mom was to have gone into the hospital for observation as the doc started her on Tikosyn and to have a cardioversion if she couldn't tolerate the med. This would have been the third anti-arrhythmic she tried. However, she called the doc and said that, because the side effects from Amiodarone and Flecainide were unbearable, she refused to be a "guinea pig" for the Tikosyn. No word on whether the doc will go ahead with the cardioversion or continue to treat her, since she is getting very balky about the interventions. Meantime, she had another near-fainting spell in the grocery store. I suspect she's nearing the point where hospice will be her next move. While I've tried to be encouraging, it may be the right thing at this point. She is in the early days of renal failure, the anti-arrythmics are hard on her liver, and the side effects have been difficult (uncontrollable diarrhea, loss of appetite, and high anxiety). At least off the meds she feels well if she doesn't do much more than putter around the house. Not sure what the lessons learned here are. Is OHS really feasible for those over 80? Did the doctors fail to take into consideration her generally poor health? Would the outcome have been better at a major heart center? Did her refusal to participate in cardiac rehab affect her long-term prognosis? Why has the a-fib become worse post-op? Why haven't the treatments worked? I feel I need to be focused on what our next steps are and not waste too much time looking back. But as someone looking at valve surgery at some point down the road, I am not "heartened" by the difficulties Mom has faced.

Mom is in almost constant a-fib ... again. Another cardioversion, her second, has been scheduled for January 10. Meantime, Flecainide has been prescribed because she refuses to take Amiodarone. Flecainide sounds like another side-effect-ridden danger drug. Anyone have any experience? Cardiologist recommended an ablation, but electrocardiologist went with cardioversion because of Mom's poor health. She has CHF and early kidney failure. She is also having chronic diarrhea, which is really getting her down. The docs have asked me to be there for the procedure (of course I would be!) to discuss her condition. I don't expect good news, and I think they want someone there with her when they talk to her. Christmas Eve is the fourth anniversary of her AVR. It's been a long, rough four years.

I'm budgeting for medical expenses for next year now that Obamacare is on the verge of being overturned. Just got my statement for my yearly echo. $1636 (insurance company dickered it down to ($1230), plus $208 ($141) for the cardio to read it. (I do have insurance for now and will pay $435, which is a deal, comparatively speaking.) Anybody willing to share what their docs charge? Just for fun, the echo I had 30 years ago to diagnose the MVP cost $300. Times change!

Cancer doc said today my blood cancer has been "stable" for the past 18 months, and, while the progression of this disease is unpredictable, it could stay that way for months to years without my having to go on chemo. Given that the heart problem is also stable, I feel like I'm in pretty good shape, like one of those "classic cars" from the 1950s. Let's say a 1954 Chevy Bel Air. Aqua. With that chrome airplane hood ornament. And a white hard top (cuz I'm white on top, too!). Maybe it's a little chunky looking, but it still has has good lines. There might be a few dings in the door, problem with the fuel pump, runs a little hot. But everybody's amazed that it still turns over in cold weather and looks as good as it does. Yup, that's me today. And, speaking of Bel Airs, dig that whammy board, sax, and piano solo! https://www.youtube.com/watch?v=dgHFxPGMg4M

Talked to the cardio today. No change in the mitral valve; actually moved down from moderate/severe to moderate. I realize that doesn't mean I'm getting better, but things are stable, and that's good news. Blood pressure remains good. Heart function is 70 percent and there is no ventricle enlargement as sometimes happens with MVP with regurg. Because I expect to lose Obamacare under the administration, we discussed what things look like long-term, and he said he would bet that my valve is unlikely to need surgical intervention before 2019, when I qualify for Medicare (though that came with all the caveats that sometimes things can change suddenly and blah blah). But overall, a load off my mind, but leaves me concerned for others who rely on the ACA for access to insurance. We also talked about an alternative care plan in case I lose insurance and need to pay out of pocket. He said he would agree to see me once a year for an ECG as long as I promised to contact him with symptoms. So my continuing heart care looks doable. Complicating the picture somewhat is what he suspects is adult onset asthma/COPD. This runs in my family, and he urged me to talk to my family practice doc at my check up in December. So: That leaves all bases covered except the blood cancer situation, and I have an appointment with the hematology oncologist next week. FWIW, if anyone else is in the Obamacare system, a friend who is an insurance expert, tells me that Obamacare is likely to remain fully funded through 2017, and if no action is taken by the third quarter of next year, it will like be a "go" for 2018 as well, OR some clearer picture of the Obamacare replacement will be forthcoming by then. Meantime, Mom called. She was assigned a new doctor because hers is on vacation. She really likes him and asked to be switched to him permanently. He told her she is in Stage I kidney failure (which means early stage), ordered more tests, and said that there was a lot they could to to help her. (Though whether she will follow that low sodium diet and stop drinking Ensure like water is anyone's guess. Doc said that Ensure is a high protein drink that is sometimes hard for those in renal failure to process.) She goes back tomorrow for the rest of the test results with Dr. Dreamy. Nice to see her positive about some things. She has her cardiology appointments in a few weeks, so we should know what the Big Picture looks like. So juggling with all balls in the air for now.

Still trying to get answers from doctors. Mom is in a-fib. Family doc did some tests and put her on spironolactone, a diruretic they said would work better than Lasix alone. My guess is that they suspect her kidneys are compromised because of the CHF. She lost quite a bit of water weight. Family doc said he thought her a-fib was not "immediately dangerous" but was going to try to get her in to see the cardiac team sooner. So still waiting. She agrees she needs more in-home care. It will be up to me to arrange it, though. She seems not to care about doing anything for herself anymore. Mostly frets over not getting her hair done and the fact that the carpet pad news to be trimmed so it doesn't show.

No need to respond to this; just venting, feeling sorry for myself, and at my wits end to know what to do with my mother. Mom is getting over two weeks' worth of diarrhea, but is now weak and called today saying she could feel her heart skipping beats. Chest pain? No. Shortness of breath? No worse than usual. Any tightness in the chest? No. Pain in neck or jaw? No. Blood pressure? OK. Tried to get her to call 911, but she griped about the hospital pillows, inability to sleep out there, the weird drugs they give her, and said what she really needed was for me to come up and get her cat some food. So up I go tomorrow a.m. (I'd go tonight, but I can't drive in the dark.) Is she dramatizing things to ensure I'll come and help her? She has a very elaborate hairstyle that she will not compromise on or let anyone else work on, and if it's out of place, she won't leave the house. Has she just not been able to get her hair done? Or is she really taking a downward turn? I wish I frickin' knew. She canceled her electrocardiology appointments when she got sick (did she get sick because of anxiety?), and still needs to address what seems to be ongoing arrhythmia. But I honestly cannot get a straight answer out of her. So tomorrow I drive 120 miles round trip for cat food delivery and an onsite looky loo at what's going on with her. And I just cannot do this anymore by myself. She has a regular GP appointment Wednesday, and I am hoping to persuade her to let me go with her to discuss a better home care plan. She has someone coming in twice a month, but needs someone twice a week at this point. Am hoping the doctor might leverage her into senior services quicker than I can. But she has never let me go to the doctor with her before. She doesn't know I have blood cancer and mitral valve problems, and I may have to confess that in order to try to get her to agree to more in-home care. If my own health goes bad, I won't be able to do much. And I don't want to spring that on her suddenly in the middle of a crisis. Honestly, there's not much I can do now because of fatigue and compromised immune system. I have my own cardiology appointment (rescheduled it once already to accommodate her), and I really need to find out what the last echo showed. So I won't reschedule it again. Also have my yearly hematology appointment coming up, and my blood counts are looking worse. They jump every time she has a crisis; the specialist said, yup, stress can jack your blood work around. So, much as I really hate adding to her stress, I don't think it's fair to her not to know that I am not in the best shape and she needs more back-up. She has a couple of friends in town, but she doesn't want to be "beholden" to them, and would rather call me. She thinks calling me is OK because she always tries to give me $40 for a visit, which would pay for over two hours of in-home care. So just trying to collect my thoughts with questions for her doc: Is Mom in congestive heart failure? What stage is it? What does it mean to be in that stage? What can be done about it? Does she still have a-fib or other arrhythmia? She refuses amiodarone. What is the next step? Are her kidneys and liver working OK? (Tests have been wonky in past.) She lives alone, and I have health problems and live 50 miles away. What in-home care is recommended? Does she have any underlying problems that might have caused the diarrhea? What? Are tests needed? Is there any palliative care that would help with symptoms? These include back, neck, and knee pain; extreme fatigue; general weakness; anxiety, sometimes severe; shortness of breath and wheezing. Should she be receiving monitoring for any health problems? Could that be arranged through the Visiting Nurse?

Anyone have experience with this drug? My mother's electrocardiologist's office called her about three weeks ago and told her she was having arrhythmia detected from her pacemaker and to pick up some amiodarone they were calling into the drug store. As of last Sunday, she had eaten nothing solid for days, could not walk to the front door without breathlessness, was nauseated, and her anxiety was through the roof. She called the doc this past Monday and told her she would rather die than take the amiodarone, and the doc told her to go off it and come in for a consult in mid-October. Even though the doc had Mom on the lowest "loading dose" and reduced the dosage quite a lot over the course of three weeks, this stuff just about sent Mom around the bend. Mom was on this drug right after valve surgery, and it took her several weeks to feel better when it was discontinued. She had a similar crisis of nerves and nausea last time around. Weird thing is that Mom was feeling quite well before the doc saw the arrhythmia and put her on the amiodarone. I don't know what the next step will be other than that Mom, who is 83, says that she wants to make it clear to the doc that she wants more quality than quantity of life at this point. I'm really ticked off that a doctor would order this drug, which comes with a boatload of side effects, without any instructions, an exam or other tests.

Mom, in her 80s, had a cardioversion back in June. She visited the "electrician" a week ago, and the good news is that she's still in normal sinus rhythm. So why does she feel so crappy? Doc seemed to think that lack of exercise is the biggest problem, and it's doubtful that she will start exercising now. She has many osteo problems, but some of these have worsened by being sedentary. She is becoming very frail and that takes a toll on her confidence and mood. And it doesn't help that CNN is on 24/7 and this is an election year in which everyone is pi**ed off, no matter what side of the political spectrum they fall on. I'm concluding that the trauma of having your heart valves fixed surgically is really only half the story to quality of life later on. The other half is being willing to put in the work to regain as much of your strength as you can. Cautionary tale. Do your cardiac rehab, folks, please. The therapists can adjust the exercises to work around your aching joints, and I've seen very elderly people with walkers doing their exercises while sitting in a chair.

End of September am due for my yearly echo and then a check up with the cardiologist in October. September I'm also due for quarterly blood check to check on the status of the essential thrombocytosis, and a follow-up with the hematologist in November. December I have a regular old check-up and blood pressure check, so by the end of the year, I'll know if I'm still in holding pattern on all this stuff, or whether anything is heating up. I seem to have "moved on" from the anxiety stage about these health realities and into a more philosophical frame of mind. Not to say the anxiety won't come back, but I'm enjoying feeling relatively free of nerves right now. I feel so lucky to have dodged valve surgery and chemotherapy for this long. And I am deeply grateful to the students in my summer lit course for being such a great bunch. It was a small class, just 10 people, so a rare treat for me as an instructor to let students lead discussions and for me to get to know them as people. It was also such a pleasure to be able to share some great poems, stories, and plays with such a receptive audience.

Heard this the other day and didn't happen to see a link to it. Focus seemed to be on post-heart attack rehab, but benefits are tremendous. I truly think my mom's overall recovery and post-op quality of life would have been better had she been willing to go. http://www.npr.org/sections/health-shots/2016/07/18/485871530/cardiac-rehab-works-great-so-why-don-t-people-do-it

Had high hopes for Mom's cardioversion, but she went back into a-fib a few days ago. We knew the procedure was not a cure, but hoped it would bring more long-lasting relief than it did. Docs think there may be some pulmonary problems exacerbating things. Hoping that we will get some info on next steps soon. This is taking a pretty big emotional toll.

Took Mom for the cardioversion Tuesday morning. They put her in a twilight sleep and zapped her once. Took about 15 minutes. They kept her for a couple of hours for observation, and when she was alert, we grabbed a sandwich and went home for lunch. Doc said it took one zap to put her in normal sinus rhythm (she never really shook the a-fib after her AVR three years ago despite meds, pacemaker, and etc., and breathlessness, fatigue, and anxiety had been getting worse for some months recently). After the cardioversion, Mom immediately felt better. Anxiety lifted, and she was no longer short of breath or wheezing. She had some stinging on her chest where the "zapper" was, but otherwise no side effects. Doc said her arrhythmia was not too bad, but that discomfort can be mild or more severe regardless, especially in someone in their 80s, as Mom is. While the cardioversion is not a cure and may have to be done again at some point, the doc said she hopes this will improve Mom's quality of life and "hold her for a while." Mom said she would not dread having the procedure again, and is grateful she doesn't have another bunch of meds to take. So despite the screwed up communication about the procedure, this seems to have fixed things in the short run. My brother checked in with her this evening and said she is making lists of things she wants to do now that she feels better.

The receptionist at my mother's pacemaker doc called her out of the blue to come in for a cardioversion for persistent a-fib on Thursday. They told her someone would call about it, but no one has. Setting aside the outrage I'm feeling that office staff who know nothing are assigned to call elderly heart patients with this kind of news ... 1. As I understand it, cardioversion is usually unsuccessful even if you take anti arrhythmia drugs. Mom is in her mid 80s. 2. Usually a TEE or other diagnostic is done to ensure the patient doesn't have clots that could cause a heat attack. Nothing like this seems to be in the works. 3. Mom thinks this will cure her a-fib. However, she is in CHF following AVR a couple years go. Is this really a good idea? I need info asap. Thanks.

Maybe this really isn't the place for this, so feel free to ignore, but looking for advice/comments, about my mother. She had AVR a few years ago at age 80. She takes her meds, but refused dietary changes and refused cardiac rehab. She was diagnosed soon after her surgery with CHF, and she had a pacemaker installed a few months later. Pacemaker doc has detected more frequent and severe a-fib, and is scheduling some blood tests (she cannot tell me what they are) and an ECG for next week. I realize that a combo CHF and a-fib is never good. She is becoming much more frail. Am trying not to jump the gun before I have the big picture here, though she refuses to let me come to the doctor with her, so I only know what she says. My sense is that it is past time for us to think about whether she should continue to drive (for her own safety and that of others) and how to persuade her to let someone come in to check on her a few days per week and help with housework. However, she is incredibly stubborn and uncooperative, and all suggestions get the Automatic No. She is a difficult person with no close friends, and I am unable to care for her in my own due to my own health concerns. In fact, just writing this is making my own heart hammer.

QUESTION 2 Not having chest pain, but feeling like someone is squeezing my upper chest while my heart is doing skippy beats. This is happening several times a day now instead of a few times a month. Also, blood pressure is tending to run low (100/58), and exercise makes chest tighter. What fixes it for several hours is full-strength coffee and a hit of something sugary. Then I feel OK to exercise. I already see a host of doctors every three months or so, so I just don't wanna deal with another appointment, so planning to wait to ask about it all then.

QUESTION 1 Eliquis, anyone? My mother has been placed on a low dose for worsening a-fib following AVR three years ago and CHF. She has a pace maker. She doesn't want to take Coumadin, but has heard that Eliquis is a new drug with potentially worse bleeding episodes.

Cardiologist said today my heart sounded fine, no changes, get another ECG in six months. No heart damage or enlargement. So for now his best guess is that the essential thrombocytosis (my "other disease") is the cause of the increased lethargy, fatigue, and ocular disturbances. However, he said he needed to know if my "sinking spells" became worse or more frequent. The plan now is to stay as healthy as possible and to "coast" until TMVR is more routine. We did develop an alternate plan for dealing with the essential thrombocytosis in a conventional OHS scenario if the valve gets worse before TMVR is more widely available. And we looked at the all the possible side effects of drugs used to treat ET so that we could find the one with the fewest cardiac side effects. So, all in all, a good and productive visit. Plus he said he finds my case "interesting" because of the complication with ET. And who doesn't want to be "interesting"?

Well, maybe not celebrate ... Sadly, heart valve problems aren't rare, but my other "ailment," essential thrombocytosis, is. Just trying to get the word out to communities of caring people about Rare Disease Day through my blog. If you know someone with a rare disease (or you have one on top of your valve problem), here's the link: http://ethrombo.blogspot.com/2016/02/share-info-for-rare-disease-day.html

Well, I guess I really have to face facts and stop pretending that the weather or cold snaps are making me sicker. I'm at the point where I've cut back my workload, and I'm still completely zonked when I get home. I don't want to do anything. I got sick of feeling like a slug this weekend, and tried housework. Hoo boy. this was just cleaning sinks, emptying trash, changing rugs, and doing some dusting. After 10-minutes I was out of breath, heart was pounding, and anxiety levels (which go way up when I'm tired) were through the roof. I also started getting hot-flash surges every few minutes, typical if I over-do. I had the thermostat turned down to 55 at one point until I realized poor Raber was walking around the house in a stocking cap and mittens. What's weird is that I can still walk around the block if I get myself in some kind of rhythm. I can also use my exer-cycle for 30 minutes three or four days a week (though this is an exercycle for weenies without much resistance, just enough to keep the circulation going). I need to have my labs (for the blood cancer) done Friday. My liver isn't working up to par (typical of with this cancer), and we'll see if there are changes that might explain this. Oral chemo is always hanging over my head, and if they start that, I'll be even more tired. Then it's on to the cardio March 10 to see what the surgical picture looks like. Anyhow, I'm just starting not to care anymore. I'm not scared or upset. I'm not in denial. I just feel like I want to detach from everything and let Nature take its course. I keep having fantasies about going to some remote location and reading books and petting cats until The Big One Hits.

Despite age and infirmity, Raber and I are the saviors of yet another stray cat. Edgar is lolling around on a big pillow in the back room this morning, exuding his handsome charm, having come back from the vet when an injury forced us to make a decision about him. The other cats look at me as if to ask, "WHY?" I try to explain it over on the blog dedicated to my other ailment, essential thrombocytosis. Maybe some of you can relate to the reasons why we decided to deal with taking in another creature despite a hazy health future. Read more here: http://ethrombo.blogspot.com/2016/01/getting-on-with-life-one-damn-cat-at.html

Would like to know more about recovery and what the "new normal" is post TMV repair (as that is looking more likely for me). All I know is that this is less invasive but results in more severe leaks post-op. Not really even sure what questions to ask at this point, so any info is helpful. You can post on my Guestbook if you want. Thanks in advance.

I have a rare blood cancer (essential thrombocytosis), and for anyone else on here in the same boat, here are a couple of things I recently learned: Fellow ET patient said that, in addition to telling your cardiac surgeon all about your disease so he/she can address increased clot risk, it's important to have an extensive consult with anesthesiologist. Apparently the pump and accompanying meds used to circulate your blood during surgery can be a risk for those of us with ET or other myeloproliferative disorders. Also, at larger hospitals, transcatheter repair or replacement is becoming more common for those with ET and related cancers because of clot risks. I was heartened (no pun intended) to learn that this procedure is becoming more common; am hoping by the time my mitral valve is ready to blow that this will be a possibility for me. My regional hospital already does TAVR and TMVR, and may soon expand those eligible for that procedure to folks with my particular ailment. Happy New Year to all who are waiting or recovering.

My mother had emergency AVR two days before Christmas two years ago. She's OK now heartwise, but I know this can seem like a godawful time to be dealing with this. Just want to offer some words of encouragement if you're recuperating or caring for someone: It's likely you'll get the royal treatment if you're in the hospital over the holidays because they'll have discharged as many other people as possible. Staff couldn't have been nicer to my mother or to me. The people who ran the coffee cart in the hospital lobby offered to pray with me. Look for the good in people. It's there. Concentrate on getting better instead of trying to cram in a lot of merry-making. My mother felt guilty about "wrecking Christmas." I kept telling her that if she'd died, it would have been a lot worse. It doesn't seem like it now, but you will not believe how much better you're going to feel in a year. Plus you have something new and special to celebrate every holiday: your new and improved heart. Phone calls, short visits, and notes are a really nice Christmas present for patients and caregivers alike. I remain very grateful not only to those who called to keep my mom's spirits up ... but the folks who called to see if I was doing OK. Maintain a sense of humor (I fall back on David Sedaris's "Santaland Diaries"; works every time) and find some good (and optimistic) videos to watch on TV or some cheerful music. Thanks to everyone on this site for the inspiration this year.

GERD isn't one of the symptoms for my blood disease, so searched this site and found folks who are post-op with GERD, but I'm pre-op watch-and-wait, and have been having moderate to severe GERD in the past week. Occasionally, my windpipe hurts if I take a deep breath. Is this something you'd take to your cardiologist before your regular check up? (My next one is in March.) Blessed All Souls Day. There are many souls here I pray for daily: Tammy, W. Carter, Mary, Rita, Alma, Steve, Gloria, Sophia, Shirley, Jaqueline, Dan, and more, especially those having surgery. Inspired by this site, I've created a blog for patients with essential thrombocytosis. If you know anybody who has it, please feel free to send them my way; there are only about 150,000 of us in the entire country with ET, so it's hard to find folks to share with: ethrombo.blogspot.com

Preliminary bone marrow results are raising more questions than answers. Until that mystery is solved, OHS is off the table as docs can't predict bleeding/clotting problems and complications. Gathering info for a surgery that may never take place seems counter-productive right now, and I don't think I have much to offer in the way of info. So wishing everyone the very best and giving props to Adam for setting up this site. It's really a great place to get info and understand the range of outcomes for different types of valve surgeries. Will come back if/when I'm cleared for surgery.

After eating that Tim Horton's pumpkin muffin after my bone marrow test Monday, I experienced uncomfortable heart pounding. This has been happening more frequently in the past couple of years after I eat something high in sugar (which I don't do often, as I control a tendency to high glucose with diet). Anybody else?

WARNING: THIS IS LONG. I'm mostly just writing this to remind myself why I'm bothering with this test at all. Bone marrow test is tomorrow. I have four more Ativan in case I get nervous; the hematologist said one may be enough, but take two if need be. I took one to see how strong they were. It certainly took the edge off life for a few hours. (Again, if you had a bone marrow and have a horror story about it DO NOT TELL ME HOW AWFUL IT WAS. I appreciate Tammy's and Rita's assurance on this, and I'm taking their experiences into the procedure room with me as my mantra: pressure not pain, pressure not pain). Doc is going on the assumption that the high platelet count is essential thrombocytosis (aka ET. or thrombocythemia), a lifelong condition that can be controlled with oral chemo if the platelets get too high. But so far the blood tests haven't been that helpful. The JAK2 mutation they look for to confirm the disease was negative ... but it runs false negative about 25 percent of the time, hence the need to dig into the bone marrow (literally). Some other test sent to the university hospital wasn't done because the sample got lost (one reason I've decided against going to the university hospital for any OHS; I'm afraid they'll lose me!). Anyhow,important to get a clear picture of what's going on to get a) the right treatment and b) best info to a future cardiac surgeon to see how the blood situation might affect OHS. The pieces to the MVP puzzle are in place and being monitored by the cardiologist. Regurg is moderate to severe, but rest of the heart looks good, and repair seems to be in the offing unless things go south. COPD/asthma may be something that needs another check to see whether that's a factor that should be considered with OHS. Am waiting to see the GP in December to raise that issue. Am hoping she might be able to deal with that without sending me on to a pulmonologist (please please please, sweet Jesus, no more doctors in this mix!). Am hoping that the picture will come into focus soon. I've been at these tests for the better part of 10 months. I'm fatigued and lethargic a lot of the time, but I have a lot of good days, and I have yet to feel assured that any treatments on offing are going to improve my quality of life. However, I guess I won't feel that assurance until I have clear diagnoses. Once I do, I can make an informed decision about what to do, and use that info to help me for certain eventualities. Anyway, that's the story for now and I'm stickin' to it.