Left ventricular diastolic dysfunction with preserved EF
My first question:
Is there a place I can go to on this forum with the MANY questions I have about concerning symptoms and what test results mean?
I have been told “you’re too anxious”, “discuss with your PCP long term anti-anxiety med” and “stop using Google”.
As a RN (I worked primarily ICU), I could go to a Mayo approved internet site or “Up to Date” when I had questions or wanted to learn more about conditions of my patient.
I was EXPECTED to do this; it was part of my job.
It is not always possible to get an appt to have test results explained.
I try to use medical sites to obtain as accurate information as I can.
I’ve had to wait weeks to find out how “ground glass opacities” in your lungs, “possibly from Covid” pertains to my health. (I had a mild case of Covid in January with little coughing)
I have a history of breast cancer.
This spring I’ve had new shortness of breath when I walk.
I have new pitting edema in my lower legs.
I’ve had a 10-15 pound weight gain over 6 weeks with no change in eating habits.
I’ve had chest pain, (with one ER visit for chest pain when walking, elevated d-dimer and CT that ruled out pulmonary embolism, but showed ground glass opacities. (My experience with GGO was seeing this in our most critical ICU patients!)
An ECHO done in June showed “2/3 left ventricular diastolic dysfunction with preserved EF”.
I looked it up on the most appropriate sites that I could find.
I have needed to understand what was happening to my body.
All of this was NEW.
And I was scheduled to have major surgery on June 27th.
I wasn’t able to get a cardiac consult and have some of this explained to me until June 24th.
I was started on a small dose of Lasix after that consult and was able to walk without shortness of breath within 2 days.
All of the tests ordered were very appropriate.
I wish the timing so close to surgery had been better.
I have left out the exclamation points as much as possible, and I hope you can sense my frustration.
Having worked in the medical field for over 40 years, I do understand scheduling glitches and delays.
So, if not the internet, “Dr.Google”, then where?
And as for “too anxious” , no I do not need “long term anti-anxiety medication”, I just needed answers.
Not a pill…
Just an appropriate site to have symptoms and test results explained.
Is there or could there be a Mayo approved site to answer questions?
Interested in more discussions like this? Go to the Heart & Blood Health Support Group.
I am a doc tot by profession and also was diagnosed with a sudden LVF and type 2 diabetes I can relate to what you are feeling being a medical professional yourself in my case both the developments were sudden I was as fit as one can be before 19 of April got an infection and then it was down hill from there while you wait for your appointment my advice to you is that you need to restrict your daily fluid intake it should be from 1 to 1.5 litres daily it includes all beverages including thin soups continue with lasix if it suits you but you need to have your potassium ions checked. because of the diuretic as for site where you can find answer you can contact mayo clinic mentor Teresa she will definitely come up with answers all the best
Sorry it’s a doctor and please. Cut down on your sodium intake
Your frustration is very understandable. It appears as though you have had a variety of serious health issues and I can certainly understand you wanting to understand them better and have a handle on what is being done.
As you may know already, Mayo Connect is a patient-to-patient support group. Therefore, we can't interpret medical test results or advise, but we can share our experiences with each other. As a patient myself who has had three surgeries for rare cancer, neuroendocrine tumors, as well as a moderate leakage of the aortic valve with diastolic dysfunction I can certainly relate to how you want answers to your questions. I also understand that you would like them sooner rather than later. It all makes sense to me.
I can only relate to you how I navigate the health care system and perhaps my ideas with help you. First of all, I tend to use the patient portal to follow up on test results. If I have questions about those results and I don't have a doctor's appointment in the near future, I will use the patient portal to ask the doctor questions or ask him to explain more about the test result. I have found that either the doctor (or most likely his PA or RN) will get back to me with the answers within 48 to 72 hours. Also, there is a good website that explains different blood tests and their normal ranges which you might find helpful. Here is the link to that website, https://www.testing.com/tests/.
Another thing that might be helpful is to use reliable websites that specialize in your disorder. At one time. I was thinking that I might have to have a heart valve replaced, so I went to the American Heart Association's website, https://www.heart.org/, and did some reading. I have also used the American Cancer Society website, https://www.cancer.org/, to obtain information. On
each of these websites there is a toll-free phone number and there are usually volunteers who man the phones for these organizations and they can either help answer your questions or lead you to the answers and/or refer you to specialists.
Having multiple, serious health issues is very worrisome and we all become concerned when we are faced with something new. It is a good thing to keep educating yourself as well as advocating for yourself.
You mentioned that you had major surgery last month. How are you doing now?
I understand your frustration. With my primary care I feel like I am doing the thinking for them, reading my test results with my computer in front of me and my iPad by my side for looking up specific words or phrases in my report. I read Medscape and have learned things about vaccinations and my conditions not brought up by my doctor. At Mayo I get a complete report on my test results and what they mean. Now to your question: I use Google Scholar. There I find studies about my conditions, which usually include a brief summary of the condition and prognosis. The treatments are covered by the studies. When I travel internationally I often get people thinking I am in the medical field. I have learned a lot from my Mayo docs and the reading I have done as outlined above. You might think about bringing someone with you to your appointments. I hope you find good answers here. Please post an update here because we care.