1. < Heart & Blood Health

Stiff Heart - diastolic heart failure

Posted by evelyn247 @evelyn247, May 17, 2016

I have been diagnosed with "stiff heart" and would like to have as much information on this topic first hand. Any way to improve this conditions? What do I expect as it progresses?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 1 7:46am
In reply to @jmb73 "Hi Everyone,- I don't know if this is the right group but I was just diagnosed..." + (show)
@jmb73

Hi Everyone,-
I don't know if this is the right group but I was just diagnosed with CHF. I was in the hospital for 4 days and am having the same symptoms but milder. I am on Lasix 4 mg and have already put on a half pound. I have Sjogrens and need to drink a lot of water but was told to limit it to 64oz. I am unable to have anything with artificial sugar as it makes me sick and gives me a headache so I sip water all day. 64 oz goes fast since I have to count an orange as 8 oz, I am monitoring my sodium and don't understand why I have put on weight. If I put on 5 lbs, I need to go back to the hospital- I really don't want to do that. They said to exercise but I am weak and short of breath when I do anything. Part of my heart has calcified, but they don't seem as concerned as I am. Any help would be greatly appreciated.
Thank you

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Hello @jmb73,

I am sorry to hear of your diagnosis of CHF. If you would like to post in a discussion group that fits your situation a bit better, Connect has several groups that discuss your specific diagnosis of CHF. Here are some links to those discussions:
--Congestive Heart Failure
https://connect.mayoclinic.org/discussion/congestive-heart-failure-246c24/--
--Congestive Heart Failure (CHF)
https://connect.mayoclinic.org/discussion/congestive-heart-failure
You also mentioned in your post that, "Part of my heart has calcified...". If you know what your calcium score is, you might also find this discussion a helpful place to post,
--Extremely High Calcium Score
https://connect.mayoclinic.org/discussion/extremely-high-calcium-score-at-42-is-there-any-positive-here/
What type of follow-up is your doctor suggesting at this point?

REPLY
jmb73 | @jmb73 | Jan 1 8:26am

Hi, The docs have me on Lasix and Lipitor and a very strict salt control with only 64 oz of liquid allowed all day. Since I have Sjogrens, the liquid is a problem. I am also enrolled in a 30 day monitoring program where a nurse will check on me. I have to weigh myself daily and if I go up 2 lbs in a day or 5lbs in a week, I need to call the doctor. I can have 2000mg of sodium a day. My usual doc is on vacation and the temporary, young doc said he might call me back to the hospital for a stent procedure. This thing is very scary. They posted 143 as my calcium score and I don't know if that is high or not.
Thanks for your help.

REPLY
nkb2023 | @nkb2023 | Mar 3 7:57am
In reply to @ninimurphy "I have Diastolic heart failure as a result of HOCM! I have been through many medications..." + (show)
@ninimurphy

I have Diastolic heart failure as a result of HOCM!
I have been through many medications and surgeries in last few years to address issues caused by HOCM. As a result I am having heart failure and am being put on transplant list, which does not come without its own major drawbacks.
It started out with little Arrhythmias and just blossomed from there over the last 10 years.
Medications played a big part in keeping me healthy and functioning in the meantime.
Having a cardiologist and pulmonologist that are good and work together is a blessing!

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An insightful message. I was diagnosed of HoCM in February 2022. I started taking medicines like Concor, Atorva + Ecospirin, Ivabrad, Jardiance to prevent the stiffness of heart LV. The further diagnosis resulted into the prognostic significance of AL Amyloidosis Cardiac. I was diagnosed of AL Amyloidosis in July 2022 and started Dara+ VCD* ( July 2022 till May 2023) with not getting normal with the free light chains especially Lambda and the treatment regimen got changed to Dara+ VPD ( June 2023 till November 2023 ) with no changes in Lambda and owing to worsen heart health the treatment regimen again changed to Melphalan + Dexamethasone ( December 2023 till February) 2024 with bimonthly maintenance doses of Dara. My heart health has deteriorated with LVOT gradient 37 & 60 Valsava . I have no idea as the cardiac medicines with Chemo + have started affecting my kidney with 1.05 Creatinine and 47 eGFR. I am in a real soup as Haematologists and Cardiologists are not able to follow any coherent approach on deciding the treatment regimen. My heart health and haematologic health are not in sync. I am in New Delhi, India. Even Dr. Saji Kumar of Mayo, Dr. Vaishali of BU or Dr. Vechalekar of UCL ,UK are not able to provide any definite guidance. I am sad to experience the casual approach of Doctors across the borders in appreciating the severity of the disease and be humane towards providing support and proactive guidance .
chandra@2023
Prof.( Dr) Satish Chandra
Facilitator of Amyloidosis Support Group of India ( ASGI) ,New Delhi India 🇮🇳

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Mar 3 10:16am
In reply to @nkb2023 "An insightful message. I was diagnosed of HoCM in February 2022. I started taking medicines like..." + (show)
@nkb2023

An insightful message. I was diagnosed of HoCM in February 2022. I started taking medicines like Concor, Atorva + Ecospirin, Ivabrad, Jardiance to prevent the stiffness of heart LV. The further diagnosis resulted into the prognostic significance of AL Amyloidosis Cardiac. I was diagnosed of AL Amyloidosis in July 2022 and started Dara+ VCD* ( July 2022 till May 2023) with not getting normal with the free light chains especially Lambda and the treatment regimen got changed to Dara+ VPD ( June 2023 till November 2023 ) with no changes in Lambda and owing to worsen heart health the treatment regimen again changed to Melphalan + Dexamethasone ( December 2023 till February) 2024 with bimonthly maintenance doses of Dara. My heart health has deteriorated with LVOT gradient 37 & 60 Valsava . I have no idea as the cardiac medicines with Chemo + have started affecting my kidney with 1.05 Creatinine and 47 eGFR. I am in a real soup as Haematologists and Cardiologists are not able to follow any coherent approach on deciding the treatment regimen. My heart health and haematologic health are not in sync. I am in New Delhi, India. Even Dr. Saji Kumar of Mayo, Dr. Vaishali of BU or Dr. Vechalekar of UCL ,UK are not able to provide any definite guidance. I am sad to experience the casual approach of Doctors across the borders in appreciating the severity of the disease and be humane towards providing support and proactive guidance .
chandra@2023
Prof.( Dr) Satish Chandra
Facilitator of Amyloidosis Support Group of India ( ASGI) ,New Delhi India 🇮🇳

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https://connect.mayoclinic.org/discussion/amyloidosis-2/
Hello @nkb2023, and Welcome to Mayo Connect.
I see that this is your first post, and I am so sad to read what you have been going through. I can't imagine how frustrating it must to see your health decline the way you have.
I put a link for you to check out about heart amyloidosis, perhaps you will learn some information there. The link you posted in is about CHF/diastolic heart failure...so the amyloid heart people may not see it.
I sounds like you have been through a lot. Many different diagnoses, many different medications, and no real progress.
You mention the Amyloidosis Support Group of India...are you able to connect with others like you who struggle with medications, treatment and feeling like you are not being heard?
Have you thought of getting yet another opinion, say from Mayo Clinic Rochester, USA?

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