Member Stories
ER Drama
Everyone has a frustrating emergency room story, right? Mine was 7.5 hours spent in the ER recently with severe bronchitis (but no breathing difficulty.) Most all the time was spent expensively ruling out congestive heart failure which was not clinically indicated at all and then ruling out pulmonary embolism using a CAT scan with contrast in the middle of the night. What if I had reacted to the contrast material? No one was around to help. Reckless! No embolism, of course. Thousands of Medicare dollars —your tax dollars at work.
E.H. – Connecticut, USA
Uneccessary Risk?
I’m 75, female and they told me my left carotid artery was 70% blocked and wanted to operate on it. So I foolishly said yes, even though I had no symptoms. I had a minor stroke right after the procedure and ever since then it’s hard to walk. I live in fear of another stroke.
J.B. – New York, USA
Bypass Blues
I’m only 61, they convinced me to have a triple bypass operation. I’ve never imagined what a difficult recovery it could be. The pain was unbelievable. And I’m still in kind of a brain fog. They say it will get better but it’s four months now.
R.M. – New York, USA
Escaping Hip Revision
My wife had her hip replaced in New Haven Connecticut in 2008. The operation went well. Rehab was difficult but successful. You really couldn’t tell in her gait that she had a bionic hip. And then about a year in, things changed. Discomfort in that hip caused her to limp slightly. We thought it would go away but it didn’t. We were living in New York at the time so we went to a certain world-renowned orthopedic hospital there. In their opinion, the only thing that could produce that symptom, though x-rays looked normal, was an infection in the joint. They convinced us to aspirate it with a long needle even though that carried a risk of infection. The test was negative. They wanted to revise the hip anyway. We were not comfortable with that drastic solution. I remember a “very distinguished” hip surgeon saying to me. You’ll be back! After a few weeks more of discomfort we had heard about an orthopedist in CT who listened to his patients. He carefully looked at her walking, did a few simple nerve conduction tests and said he believed that somehow we had just damaged one nerve in her lower back and that it would heal with compresses and physical therapy. He was right. I often think of what would have happened had we taken the simplistic advice of that New York doctor. We are so thankful we followed our sixth sense.
J.W.M. – Connecticut, USA
Adjuvant Chemo: Where’s the evidence?
I live in Tennessee and I’m very grateful that I got a copy of the Patient’s Survival Guide in advance through a friendship. It’s helping me making a rational decision about continuing adjuvant chemo treatment beyond four years after primary treatment for hormone positive stage three (barely) breast cancer. I think four years is a long time to be on any chemo agent and now we learn they are probably extending the “standard of care” beyond four years. What should we do? We want to trust God, but the fear factor is large. What if we stop the chemo and it comes back? The insight I got from the PSG book was that standard of care is sometimes based on extension of logic rather than evidenced-based medicine. I asked for any peer reviewed studies that might shed light on the decision. Like recurrence rates for my kind of cancer with or without adjuvant chemo for how long. Sounds great doesn’t it? That would do it. Guess what: there aren’t any such studies. I was shocked. How dare they? We’re close to making the decision to stop the chemo.
L.S. – Tennessee, USA
Cascading events
After being diagnosed with bradycardia, thanks to my Apple watch revealing a slow heart rate. I had a pacemaker implanted. So then my blood pressure rose and I was just put on lisinopril. The doctor also prescribed furosemide, amlodipine and Eliquis. I was already taking levothyroxine and using aspirin regularly for aches and pains. No one warned me about a possible interaction of Eliquis and aspirin. I developed anemia, fluid in the lungs, shortness of breath and misery. The doctors reduced my dose of Eliquis and started talking about heart surgery. I had all kinds of GI tests of bleeding. But as instructed before the tests, I stopped all aspirin. Things got a lot better. But now I read that there are more simple ways to work on bradycardia. That treatment— which started the cascade of serious events and witches brew of drugs many have all been unnecessary? I’m lucky to be alive after all that.
C.H. – Utah, USA
Can’t get off blood thinner
Eliquis blood thinner is the most discouraging drug I have ever taken in my life. Ever since I started it, I don’t feel like the same person. I have low energy. I can bruise just by having the car door contact me lightly while getting out and I’ve had a couple of nosebleeds. I’m just waiting for the big bleed which will put me in the hospital. They told me that I had a 5x risk of a stroke compared to average people before I started Eliquis. But now I think I’ll take my chances without it. And now I find out from the black box warning that it’s more dangerous to get off of it than my risk was in the first place. What kind of drug is this??
H.H. – Florida, USA
Blood pressure anxiety
Whenever I go to see the doctor my blood pressure ends up in the 170s. I’m young, 42, and have no other medical problems but my doctor put me on Lisinipril and Hydrochloridine. I feel unsteady when I get up after sitting for a while. Then a friend told me her blood pressure can go up 40 points when she gets anxious about something. Duh! I bought a blood pressure cuff and took my pressure at home one noontime. It was below 100! No wonder I felt unsteady. That was dangerous. I went back to doctor and told him the story. He got defensive, said he would never prescribe unless their were multiple readings. I told him I’m going to taper down the medication and see what it reads at home. It’s now in the 120s and I’m off all medications. That was a close one. I’m kind of mad at my doctor for not checking to see if “white coat anxiety” was driving my pressure up! He seems unrepentant!
J.D. – Oregon, USA
Immunosuppressants by any other name
Since I was a teenager I’ve been worried about my skin and stayed pretty covered up in social situations because of my eczema – these terrible looking rashes and scales. I’ve tried every topical cream known to man or woman. My PCP always was very careful to have me stay away from what he called “high-powered drugs with many side effects.” But one day a friend told me she was on an amazing new drug that cleared up her skin 90% and so far no side effects. They drug was Rinvoq. So I asked my doctor for it. He raised his eyebrows but complied. My eczema did improve. But then I noticed I was getting more colds, and they were lasting for longer and that my digestion was changing. I looked up Rinvoq and read all of the warnings and began to wonder what would happen if I took this long term. Your site enlightened me to the fact that Rinvoq and drugs like it are actually suppressing targeted parts of your immune system, not solving the auto-immune problem in any way. They are just masking symptoms. That did it for me. I stopped the drug. I think the drug companies should be honest enough to say what they are really marketing—immunosuppressants— instead of using weasel language.
S.G. – Alberta, Canada
Incidental finding upset
I had bad bronchitis last winter and my chest sounded terrible. I went to urgent care and got some antibiotics – doxycycline – I think it was – and it worked. Three days later I got a call from the clinic which said the radiologist who read my x-rays would like to talk to me. The call was a serious shock since I was only 32 and a non-smoker. He said there was a spot on my lungs that looked suspicious and said I should do further evaluation. He recommended a CT scan and possibly a biopsy. Fortunately I had read an early draft of the Patient’s Survival Guide and seen the low incidence of cancer in incidental findings such as these. I asked instead if I could have the x-ray read by another radiologist. At this the doctor on the phone said we do encounter these all the time and perhaps I should just wait and re x-ray in 6 months to see if it had changed. I’m sure glad I did. In six months it was gone. What was it? I don’t now.
G.G. – Illinois, USA
Prediabetic predicament
When I was 52 I was aware I had some extra pounds on and I would periodically go on a diet to take them off. Everyone would compliment me, including my wife. I mentioned to my doctor that I couldn’t keep the pounds off permanently – they always seem to come back. He wanted to test me for diabetes and did on a couple of occasions and the A1C reading came back 6.1 each time. That’s not full diabetes but these days it qualifies as prediabetic and he wanted me to go on Ozempic and start paying more attention to what I ate. He offered me diet counseling but there were copays for that. So I just said I’d take the Ozempic since I heard people also lost weight on it. I had to inject it myself with a “pen”. But three months in, I began having indigestion symptoms after eating. I looked Ozempic up and saw one of the most common adverse reactions was gallbladder trouble. When I read all the other side effects it was unbelievable – thyroid cancer, pancreatitis, etc. I mean how could a healthy person myself risk any of that stuff just to lower A1C and make my doctor happy and lose a few pounds? Crazy.
N.D. – Washington, USA