Cardiomyopathy

By CommunityMemberd88f42

1 min read

I was diagnosed in 2015 with heart failure and put on medication. I also have emphysema and bronchiectasis. Up until 2018, my heart nurse was pleased with my condition, but then I didn't have another appointment till June last year. I felt my condition had gotten worse, so she ordered an echocardiogram which I had last week. I haven't gotten the results back yet.

I saw my respiratory nurse yesterday, and my oxygen levels were 88. She thinks I may need oxygen therapy, but I'm a CO2 retainer and a bit worried about that. I'm so breathless I can hardly do anything. Walking from one room to another is so hard.

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suzanm Member
I have heart failure also with an EF of 20%. I have a defibrillator implanted for if it stops. Take your meds and eat low sodium diet. That is so important to preserve your heart
1. Leslie Castro Moderator & Contributor
 <inline-mention username="suzanm" user-id="3936072"/> I definitely agree. Taking your meds is very important. Exercise, limit sugars, and low sodium diet are also important. While I was awaiting my heart transplant, I did my very best to walk daily from half a mile to 3 miles a day. However, 3 miles was very infrequent if any when I had an EF of 15%. Thank you for sharing. Leslie (Community Moderator) 
2. Leslie Castro Moderator & Contributor
 Samblack4 Something’s I looked at while I was in heart failure were labeled items. I checked the sodium levels. If it was too much sodium, I avoided it. I stayed away from any soda products, canned foods, and any products that had a lot of sodium or sugar. I chose to eat a lot of unsalted peanuts, almonds, and pistachios instead when I had a craving for salt. My fluid intake was decreased by my transplant cardiologist advice as well due to fluid retention. Thank you for sharing. Leslie (Community Moderator)
John Bottrell, RRT Moderator & Contributor
Hi. @ CommunityMemberd88f42 Hi. Somehow I missed your comment here when you initially posted. Sorry about that. I just wanted to say thank you for sharing your own personal experience with us. We appreciate it. By what you describe here, it sounds like your heart nurse is going a good job of helping you manage your heart failure. You say your heart nurse said your oxygen level was 88%, and that she thought you may require home oxygen. This would definitely qualify you for home oxygen, as you can see here (<a href='https://heart-failure.net/living/qualify-home-oxygen' target='_blank'>https://heart-failure.net/living/qualify-home-oxygen</a>). And that you fear this might effect you as a CO2 retainer. Have you had a chance to talk to your doctor about this? I am curious to know what he/she said. Are you currently using home oxygen therapy? Also, I am curious to know if you received the results to your echocardiogram? I am curious to know what you have learned and how you are doing today. Wishing you all the best. John. <a href='https://heart-failure.net' target='_blank'>heart-failure.net</a> community moderator
1. John Bottrell, RRT Moderator & Contributor
 <inline-mention username="CommunityMemberd88f42" user-id="6698453"/> Thank you for the update. Glad to hear that you have "no pseudamonas." That is definitely good news. Please do keep us posted what you learn when your echo results do come back. And perhaps you will have a chance to talk more about the possible need for oxygen at your next visit with your doctor. Wishing you all the best. John. <a href='https://heart-failure.net' target='_blank'>heart-failure.net</a> community moderator. 
2. CommunityMemberd88f42 Member
 ll very breathless but pleased my heart failure hasnt worsened
Samblack4 Member
Still had no results back but the nhs is currently in a bad way. I will just have to be patient. I really would like to know what helps with the constant breathlessness, are there any medications for it
John Bottrell, RRT Moderator & Contributor
Hi. Again, <inline-mention username="Samblack4" user-id="6698863"/> Sorry you are having to be patient when you are having trouble breathing. Are you able to be seen by a medical professional in the meantime to try to find a solution to improve your breathing? John. <a href='https://heart-failure.net' target='_blank'>heart-failure.net</a> community moderator. 
1. CommunityMemberd88f42 Member
 <inline-mention username="John Bottrell" user-id="3932720"/> just had my echo results back today, 40/45%ejection fraction which is an improvement to previous echos. Must be the lungs (emphysema, bronchiectasis causing tge severe breathlessness
2. John Bottrell, RRT Moderator & Contributor
 <inline-mention username="CommunityMemberd88f42" user-id="6698453"/> That is good news about your echo. Thank you for sharing this with us. How are you feeling overall now. Is your breathing doing better? John. <a href='https://heart-failure.net' target='_blank'>heart-failure.net</a> community moderator
Samblack4 Member
Just waiting for an appointment with my consultant about my results, I will ask if there's anything more I can take for tge breathlessness, thankyou
1. Kimberly Connell Moderator & Contributor
 From experience sometimes it can come from fluid being build up. If you are prescribed water pills make you take them as prescribed it helps alot . Kimberly ( <a href='https://heart-failure.net' target='_blank'>Heart-failure.net</a> Team)
2. Leslie Castro Moderator & Contributor
 <inline-mention username="Samblack4" user-id="6698863"/> Are you retaining any fluid in your abdomen? Some of the reasons I had breathlessness was because I had low oxygen levels, retained 40 pounds of fluid and I ended up having pulmonary hypertension. Thank you for sharing. Leslie (Community Moderator)
Krishnaveni Member
Hello @CommunityMemberd88f42 , better to take cardiologist appointment. Its very sensitive issue. Don't self medicate anything. <a href='https://en.wikipedia.org/wiki/Cardiology' target='_blank' rel='noopener noreferrer ugc'>https://en.wikipedia.org/wiki/Cardiology</a>.