Yumiko's Journal

Today is the one year anniversary of my new mitral valve! My biggest concern was going back into afib, but that has not happened Have not been able to exercise much due to muscular skeletal issues (just found out two days ago that I have been living with 5 compression fractures in my spine for the last 7.5 months ) so my resting HR is still a little high but manageable (90+/-). My heart feels great! So grateful for the support provided by everyone on this site!

Thought this was spot on:

How to ease the anxiety of waiting for medical test results

	By Maxwell Strachan

A few months ago, my wife and I visited a fertility doctor in hopes of receiving a little help in our attempt to have a child. Midway through an ultrasound, in a way that suggested he was seeing something unusual, the doctor asked my wife if she’d had the scan before.It turned out he had found an unidentifiable, large mass in her lower abdomen. Specifically, it looked like it was near one of her ovaries.He told us that we needed to schedule an M.R.I., but not to panic. I went against the latter suggestion. In fact, I spent most of my waking hours freaking out. There were many things the mass could have been — a fibroid or, less likely, a cyst — but I fixated on worse scenarios.Two weeks after the ultrasound, we learned that my wife was fine. She had fibroids, one as large as a grapefruit, but a fixable problem nonetheless. With cancer ruled out, I reflected on how anxious I’d felt, and how I’d been down this road before, when waiting for results from my own medical tests. I wished I’d been better equipped to handle the intervening weeks.Waiting for test results is a common, awful part of life. Research has found that it can be as hard or harder than receiving an unwelcome diagnosis. That anxious feeling is so common that it has a name, at least in the context of cancer: “scanxiety.”Inevitably, I’ll have to wait for another medical test result again one day, as will almost all of us. So I talked to therapists and doctors to find out how I could handle myself better the next time around.

Stop binge-watching “Friends.”

Simply trying to zone out is particularly ineffective when you’re waiting for significant news, said Kate Sweeny, a professor of psychology at the University of California, Riverside, who studies the difficulty of waiting. So as much as the TV might call out to you when you’re desperate to be distracted, it’s probably not going to help.“Spacing out, listening to music, just trying to relax — those sorts of things are tough,” Dr. Sweeny said. “If they work for you, great. But I would say that for many of us, our minds are perfectly capable of loudly worrying while watching television, while we’re listening to music, while we’re driving the car.”

Instead, try playing with your dog.

Think about what brings you into the moment. Maybe it’s exercising vigorously, wrestling with your dog or reading a great book. Activities that draw you in and serve as an engaging distraction are among the most successful ways to deal with the anxiety of waiting, experts said.These are sometimes called flow activities, but you could also think of them as “focused-attention tasks,” said Shawna Ehlers, a psychology professor at the Mayo Clinic who studies the psychological and emotional effects of cancer. What works will vary by person — a crossword puzzle, perhaps? — but the key is to get in the zone.

No really, get off Google.

You’ve heard this one before, but therapists and doctors alike said that searching for answers online was more likely to add stress than to reduce it. Even Dr. Mikkael A. Sekeres, the chief of hematology at the Sylvester Comprehensive Cancer Center in Miami, tries to avoid doing internet searches when waiting for his own test results. Dr. Sekeres said he knew the limits of his own knowledge and was happy to wait for his own doctor to talk to him.“I don’t want to pretend that I specialize in an area that I don’t,” he said.

Make an action plan with your doctor.

Once your doctor orders a test, tell them you want to put a plan in place, suggested Dr. Ashwini Nadkarni, a psychiatrist at Mass General Brigham and an assistant professor at Harvard Medical School. Get specific. Ask why the test is being ordered, how and when you’ll receive the results and what they might look like. This way, you’ll know exactly what to expect and be better prepared for whatever comes your way.Dr. Sekeres also suggested creating “boundaries of possible outcomes” by asking for best- and worst-case scenarios.

Don’t feel bad if nothing works.

About a decade ago, Dr. Sweeny and her team analyzed whether 230 law school graduates could use coping mechanisms to ease their stress while waiting for the results of the California bar exam. By and large, the answer was not really — and sometimes trying seemed to backfire, she said.This wasn’t exactly a surprise to Dr. Sweeny. Even the most successful coping strategies can and often do fail, including for her.But there may be a silver lining for the worriers among us. In the law school experiment, Dr. Sweeny’s team found that the people who worried the most dealt with the results the best.If the news was good, the relief was enormous. And if it was bad, well, they were ready for it

My mother was recently diagnosed with stage D heart failure. Her bovine aortic valve is about 12 years old and doing just fine, apparently, just some mild calcification. Her mitral valve, on the other hand, now has severe regurgitation and mild to moderate stenosis. She is 90 and surgical intervention is likely not an option. (I don’t think she will survive general anesthesia or even sedation.)

A couple of weeks ago she had pulmonary edema, went to ER, and during her stay at the hospital she was on a lot of meds that were hard on her kidneys. She already has chronic kidney desease, so my sister and I are worried. The hospitalist cut back on the lasix before my mother left the hospital and told her not to drink too much water, but she’s still on eliquis, aspirin, atorvastatin, digoxin, and metoprolol. Does anyone here have a kidney desease and take a lot of meds for your heart? How do you decide which to prioritize?

My sister and I are in somewhat of a dilemma, as our mother seems to be doing fine most of the time (she even takes a class at the community center and does chair yoga), but her organs (brain, kidney, heart) are clearly failing, and we’re not sure if the meds are helping or hurting her.

I feel blessed to have been able to experience the total solar eclipse of 2024! This family trip to Fredericksburg, TX was planned long before my heart valve replacement. Even though rain was predicted, we stayed put at our vacation rental and got lucky!

Does anyone have advice for sensitive scars? The last bit of scab just fell off from my sternal incision site last week. The only directive I got from the surgeon was “don’t put anything on it,” but I think I’m past that point? It feels very taught and I have to keep my shirt front open or wear a t-shirt with a high neckline. I read about silicone tape a couple of times here. Do they help? My scar is indented, pulling inward. Literature on silicone gel talks about raised scars and I don’t see much about sunken surgical scars.

Have any of your doctors talked about anemia post surgery? My RBC and related numbers were low the entire time I was in the hospital post surgery, but no one said anything about it, so I figured it was something that was expected. I increased my dietary iron intake on my own and lab numbers have improved but 7.5 weeks out I am still anemic. Is that normal?

High heart rate after surgery is normal, apparently, but how long is it supposed to take before it normalizes? My pre-surgery heart rate was controlled by meds due to a history of persistent afib, so I have no idea what my ‘normal’ normal is or was… Controlled resting heart rate was around 65, reached 90 or higher during exercise, but post surgery resting rate has been over 100. Is that typical?

I was discharged on recovery day 5 and am actually feeling a little stressed out trying to settle into a manageable routine… Tracking my meds was a complicated process before the surgery, and there are extra moving parts post surgery. Going through the data on each new prescription, I noticed they only gave me 5 days worth of oxycodone. Am I supposed to not need it anymore after that, or is there a limit on how much opioids they could prescribe? Everything else they gave me 30 days worth.

For a sternotomy, how long is a typical stay in ICU? I am told total stay in the hospital can be anywhere from 5 to 10 days, but I’m not clear on how much time I should expect to be in ICU.

I have questions about what I should get before surgery. I already have a recliner chair, ordered a wedge pillow for when I am ready for the real bed, and asked for warm button front or full zip shirts for Christmas (most of what I have need to be pulled over my head). I will be ordering pre/post surgery drinks soon. On this site I read about getting a spirometer to practice on - is that something I should ask the doctor or surgeon to prescribe? Also I read about chest support belt, which I won’t need until after the surgery - is that something the hospital will provide upon discharge and charged to insurance? (I was wondering if it’s like the walker I got after my knee surgery.) Anything I didn’t mention that I should consider?

I am scheduled for a mitral valve replacement on 1/16/2024. I probably will have lots of questions as the surgery approaches, but the first is about STAIRS. I know I need to start walking pretty much immediately (based on what I learned when my mother had her aortic valve replaced years ago), but I can’t seem to get any definitive information on stairs. My bedroom at home is on the third floor, so if I cannot clime or am advised to avoid stairs for a certain period of time, I need to figure out where to sleep when I leave the hospital. What has been your experience?