Mayo Clinic Connect
Had cardio inversion, pacemaker, various inhalers, nebuliser/w/abutarol. ETC!! Dr. says no more to do, see a pulmonologist!
Liked by boredsilly
I, too, endure shortness of breath. How do you get things done around the house/apartment?
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I was told my shortness of breath was chronic diastolic insufficiency.
I see that this is your first post on Connect, welcome!
You are concerned with shortness of breath and diastolic insufficiency. How long have you been having this problem? Has your doctor given you any meds or other treatments to help with this problem?
I look forward to hearing from you.
@gibbs Hi, gibbs. I also have chronic shortness of breath, and one way to list it is chronic diastolic insufficiency. In my case, the doc says my ATTRwt is probably the cause (cardiac Amyloidosis related to TransThyRetin transport). Just a suggestion. If you are over, say, 30, ask your doc to order a SERUM FreeLite(c) protein assay, and a PEP. Both must be done by top labs, such as Fred Hutch in Seattle, ARUP in Salt Lake, Mayo-MN, Mass General. If the result of either is out or the reference range, or even showing ANY substantial amount of protein in your serum or urine, it can be an early warning of very serious Amyloidosis. It is a slowly progressing disorder, starting with a single cell, and doubling every few hours, and leaves dead cells in its wake, and eventually causes death. It can be treated, but not stopped. Just slowed down. It normally begins to show anytime, but usually not before age 40.
I just found out I have this condition. I had a stent placed in my left subclavian artery.. I mentioned that my symptoms have not come back but that I was still really out of breath with the least exertion. My doctor pulled up an echo from two years ago and said it showed diastolic insufficiency. I am scheduled for a new echo in two weeks. I also saw it written in my appt review that I have chronic diastolic congestive heart failure. That is why I am having a new echocardiogram. Not sure why this was missed since I kept telling them that I also get chest pain and palpitations. So I am in a waiting game to find out more. I think I am going to go to Mayo ‘s for a second opinion. I am on a beta blocker, a calcium channel blocker, a statin, a blood thinner and an aspirin. Thank you for the nice information. I will ask my cardiologist to order those tests. Please take care and thank you for responding. I am new at this posting program. Gibbs.
@gibbs Hi, Gibbs. Glad to try to help. After all, we are all new at this. Every day is new, and my first computer was counting spigots on a cow…1,2,3,,,,,,4! Next was a pencil and a piece of board or mom’s new white tablecloth. Anyway, there is a lot more to learn, I hope. Every day I read “Science Daily”, and am amazed at the stuff I have never even heard of previously.
You may also wish to view these conversations on Connect:
– Stiff Heart – diastolic heart failure https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/
– Diastolic heart failure https://connect.mayoclinic.org/discussion/diastolic-heart-failure/
I’d like to invite @c410djh @bjanderson @soloact @sdann777 @mollyb1968 @joyful556 @dancer1967 and Mentor @predictable , to join this discussion and share their experiences and insights about diastolic dysfunction, and about the various medications.
If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here:
@gibbs, how often do you experience palpitations and chest pain? Have you noticed if anything or any action triggers these?
Hi @gibbs. Glad you joined us here so we can be available to exchange information about congestive heart failure. I had been under treatment for hypertension for a number of years (more than 20, actually) when an electrocardiogram (EKG) showed my primary care physician that I had developed Atrial Fibrillation (A-fib). She promptly prescribed Coumadin (a “blood-thinner”) and referred me to a pharmacologist to supervise regular lab tests for assurance that blood clots would not form in my heart and block the blood supply to critical organs.
One day two years ago, the pharmacologist asked me about “your heart failure.” Those words knocked me over. Nobody had ever used those terms to describe my condition, so I had a very tense conversation with him and (a week later) with a cardiologist. I learned quickly that the terms make the problem seem much worse than it usually is. In fact, “heart failure” is often used to describe “chronic congestive heart failure,” with or without “diastolic” included.
Severity of heart failure is not in the conversation until “advanced” is added — or until the diagnosis is expressed as Grade A-B-C- or D (or I-II-III- or IV) with the highest letter or Roman numeral being the worst problem. As you can imagine, this suggests the first set of important questions to pose to your cardiologist in order to get a fully understandable diagnosis.
Another distinction my doctors made was based on sonograms that showed thickening (and probably stiffening) of the wall of my left ventricle. That, combined with my a-fib, added the word “diastolic” to my diagnosis. About the same time, my feet, ankles, and shins were getting swollen, indicating a loss of pumping efficiency — both injecting blood through my arteries as well as pulling “used” blood back through my veins to my heart and lungs to replenish oxygen.
So my medication was updated with a diuretic (Amiloride) to reduce water in my leg tissues; Carvedilol, a beta blocker to steady my heart beat and reduce blood pressure; Lisinopril, a kidney-impact medication for treating hypertension; Lipitor to control cholesterol; and Coumadin with baby-Aspirin for their blood thinning properties. I also maintain a close watch on my Parathyroid hormones that control calcium and on other components of my blood chemistry as a way of assuring that hypokalemia (potassium deficiency) doesn’t recur and my kidney performance doesn’t degrade any further (I have chronic kidney disease (CKD) to go with my chronic diastolic heart failure (CDHF)).
All of that makes me seem pretty sick, but that’s not the case. I’m physically active, bowl with a team every week, sing with two choruses and as a solo performer, mow the lawn, shovel the snow, etc., etc., etc. And I have an outstanding medical team just a few miles away if I need them, and I do to get all of their wise advice and answers to my questions.
I have one more thing going for me: I was born and grew up about an hour down-wind from Mayo Clinic in Rochester, Minnesota. All of my friends felt we could live forever, because Mayo was just up the road. Living now near the Bull Run Battlefield in Virginia, I’m always ready to go back “home” to the Rochester area if really excellent medical diagnosis and treatment are needed, and my regular hospital in Virginia is a member of the Mayo Clinic service enhancement system.
Let me know of any questions I might answer for you, as you prepare your own questions for discussion with your cardiologist on February 20th. Everybody here at Mayo Connect stands ready to help you track down the information you want so your relationship with your medical team will be a real collaboration. Martin
Liked by Teresa, Volunteer Mentor, thankful
@predictable– Martin, thank you for asking about questions! This April I have an appt. set up at the Mayo in Scotsdale AZ. I have been doing fine since my HA back in May of 14 and last spring my cardiologist told me he did not need to see me for 2 years. I want to be proactive so I decided to get a 2nd opinion mainly because I have questions about what should I expect with a 30% EF and a single stent.
I’m meeting with a Dr. Kennedy there and I have no idea what to say or ask? Any suggestions?
Liked by Teresa, Volunteer Mentor
Hi, @thankful. I’ve seen you around Mayo Connect over the months we both have been members. You signed up in April 2016, and I was right behind in May 2016. Glad we have the chance to get better acquainted.
Glad also that you are ready to expand your capacity to manage your health issues, get into reciprocity with Mayo’s medical experts, and fill out a full picture of what your heart (and the organs it serves) are prepared to achieve.
Not sure I can fully relate to your situation, because I come at my heart issues from a different direction — chronic diastolic heart failure caused by long-term hypertension, kidney dysfunction, and recent atrial fibrillation. Your path, as I understand it, came from a heart attack and a blocked cardiac artery which led to a decline in heart function to a 30-percent ejection fraction.
My first question for a new cardiology team would be whether my EF remains stable. How does it currently relate to a normal EF? Do the causes of my reduced EF come from factors beyond my heart attack?
For example, has my heart muscle also been weakened by cardiomyopathy, either dilated to thin a muscular wall or by hypertrophic thickening of a wall? Should I be concerned about inherited cardiomyopathy in my family? Is there evidence that my heart has been damaged by inflammatory infection? By scarring of the pericardium sac that contains my heart? What about the valves of my heart; do any show signs of limited function?
What about my other vital organs — liver, kidney, lungs, pancreas, adrenal glands, etc.? Should I undergo tests to determine whether reduced blood flow is causing them damage? How concerned should I be about my blood pressure; would it be wise to be examined by a nephrologist and/or endocrinologist. What do you suspect from my electrocardiogram (Are the electrical functions and the pulse OK?)
Are my current medications what is needed to remain stable for the next couple of years? Could I benefit from pharmacogenomic tests to determine whether my meds match my genetic make-up? Would you recommend further cardiac rehabilitation to strengthen my heart, lungs, and circulatory system?
This is a laundry list of questions to consider as you prepare for your April appointment at Mayo Scotsdale. Hopefully, they will prompt you to think of others. It’s not a list of things to worry about. Instead, it’s a subjective list that reflects more an understanding of my outlook more than yours. Against that background, here’s a website that may be useful: https://www.mayoclinic.org/diseases-conditions/heart-failure/symptoms-causes/syc-20373142.
I don’t have much information about your health and wouldn’t attempt any diagnoses anyway. That’s for the Mayo doctors. And I know you’ll be pleased with the Mayo way of giving you a second opinion that you never thought could be so satisfying. I’ll be glad to respond to any questions about what I provided above. Keep us posted on how you’re doing, always cognizant of the fact that these are public postings. If you want to communicate privately, send me a private message from the mailbox at the top of this page.
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
@predictable– Thank you Martin for all your thoughtful questions as I prepare for this visit. I will keep you & all my dear Connect friends in the loop. Have a wonderful weekend!
Liked by Martin Jensen, Volunteer Mentor
Pulmonogolist scheduled me for a return in 6 months,am I supposed to sit around and continue to have breathing issues? This ai’nt living!! Time for a second opinion!!!
Bored, I feel you. I've been having horrible trouble breathing. The last time in the hospital, my cardiologist said he was going to change my meds around. I went to the pulmonary doctor again and at the end of climbing stairs, I couldn't breathe to save my life, my pulse was over 122 but my oxygen saturation was still 98%. She just shook her head and told me she has no idea what is wrong. I have had thirty-five heart caths that have resulted in thirteen stents, 3 angioplasty's and a pacemaker and I still can't breath. I sent a letter off to my cardiologist today telling him I've given up. I have no idea where to turn now.
@racerjon, I don’t know what to say to you. I don’t know in what
religion you were raised, so I’ll just pray to my God that He keeps and watches
over you. I, too, have felt like giving up and it’s very scary.
You’re not alone. Take care, @cognac.
Thank you for your supportive message, @cognac.
I'm so sorry to hear about your struggles. I was doing some research online, and came across this information from Mayo Clinic, about pulmonary hypertension – a condition that "is hard to diagnose because it's not often detected in a routine physical exam. Even when the condition is more advanced, its signs and symptoms are similar to those of other heart and lung conditions." https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/diagnosis-treatment/drc-20350702
Have you asked your cardiologist to rule out pulmonary hypertension or conditions related to it?
Thank you for the very informative answer @kanaazpereira. I do have hypertension but never knew there was such a thing as pulmonary hypertension. I will call my pulmonologist this morning and check into that. Thank you so very much.
Well here I go again: Tooka trip of about 150 miles, thoufgt I was going to pass out, rythum of the road affected my driving? Finall ygot home. What does this mean? Next, since I have had this breathing problem, my CPAP) water has changed. Prior to the problem, the water resavoir woul use less than 1/2 the water. Now, I have to refill it about 3AM each day. Uses 1 & 1/4 of the resovior. Whats up with that?
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