REC84
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REC84, August 7,  2020  1:44pm EST

Feeling Lost

My husband was diagnosed two months ago with heart failure. This is so hard for us to wrap our heads around as he's 44, in great shape and very active. He's a BJJ black belt who pushes himself physcially on a daily basis and has not had any symtoms. He recently had knee surgery for a work related incident and when he was coming out of it they noticed something irregular with this heart and told him to make sure to see a cardiologist, Long story short we went to one in town and after a couple tests was told his IF was 35% and he had chronic failure. They did an angiogram and eveything looked fine so at our followup the Doctor said "People with this live around 5 years. Take an apsiring a day and I'll see you again in 6 months. We will likely get you ona  donor list". Our entire lives were turned upside down and we were devestated.

I wasn't about to take this as an answer and after doing research and being persisent we got him in with a great Doctor at Cedar Sinai in LA. After he did an MRI it was determind that his IF is actually 23%. He has been on Entresto & Coreg now for two weeks. I closesly track his food and he's not going over 1500 mg of sodium daily. He has lost 10 lbs because I am having a hard time getting him nutrient dense/ calorie dense foods without him going over on the daily fat. He was not overweight to begin with and he's always been so strong, I know losing more weight and muscle mass will really depress him.

We are both terrified and have felt so lost. Having a good doctor helps and reading so many posts and articles from people who were able to bring their IF up has made me feel better. If anyone can maybe direct me on the best foods he can be eating I would apprecaite that so much. I'm 35 and never would have imagined this would happen to us.

10 Replies
  • JamesPL
    JamesPL, August 9,  2020  8:45am EST

    Hi Rec84,

    I am so sorry for the struggles you and your husband are going through right now. Being diagnosed with heart failure or any type of heart disease is a shock especially when you've always been healthy. I know this is a difficult time but you have to approach each day as it comes. Whatever he has been doing phyiscally to stay in shape will help him going forward during his recovery and continued treatment. I would recommend that he do whatever he can to continue to stay in shape as much as possible. Consult with his cardiologist to see what exercises he'll let him do if you haven't done so already. 

    The diet is always a tough one but I've tried to approach it as eating the things that I know are healthy and avoiding the things I know are obviously not such as most processed foods and those food high in trans fats. I eat salads far more frequently and for me I need to add chicken or fish so I won't feel like I'm still hungry. Speaking of fish, I've increased that in my diet as well. I will eat things like mixed nuts as a snack and have increased fruit such as bannas and apples. I'll also add blueberries and rasberries to fat free Iclandic yougurt and have that as a snack. I'm mentioning snacks a lot because it helps since I've reduced my overall main meal consumption. I'll also have a bowl of cereal as an occasional snack. I stick to those that are organic and low in sugar. 

    I hope some of this helps. I'm thinking of you both and wish you both all the best!

    Jim

  • Azartist
    Azartist, August 9,  2020  9:53pm EST

    Hi, and welcome! I just wanted to let you know that you are not alone. I, too, was diagnosed with heart failure about 4 months ago in April after suffering a major heart attack. It has since been a roller-coaster of a ride for us. I find it helpful to come here and read others' journeys and stories... it helps a lot. I try and not get caught up in prognosis type stuff, as that can be pretty depressing sometimes, and frankly, not necessarily my path. 

    I am really sorry you're going through this, but it sounds like your husband is a fighter! Hang in there.

    Tracy

     

  • REC84
    REC84, August 10,  2020  12:25am EST

    Jim & Tracy,

    Thank you so much for the replies! It helps to know there are people going through the same and similar situations. I forced salmon on my husband for dinner tonight without much of a fight (to my surprise!). Your responses really made my day.

     

    -Ruthie 

  • amoeba
    amoeba, August 12,  2020  12:49pm EST

    I was told in the hospital in 2016 that with an EF of 25% and being 46 that I had a 50% of living 5 years. That was a shock, but I also knew that the intern was likely too pessimistic. The doctor who oversaw my stay was thinking on my wavelength as he told me there was "room for optimism since treatments will keep getting better." My EF was measured at 50% 18 months later and it has been 4 years since I was in the hospital.  

    An important heart failure study will be published this summer or fall from the University of Washington showing the results of 15 heart failure patients who took 2,000 mg of a vitamin B3 derivative called NR (Nicotinimide Riboside sold as "Niagen") for 12 weeks. 15 heart falure patients took a  placebo. This vitamin has lifted mice out of heart failure, and I'm optimisic that there will be positive results for people as well. I've been taking 300 mg of NR (Niagen) for 3 1/2 years and don't know if it has helped my heart. 

    Here are details of the study that was completed in June 2019:

    https://clinicaltrials.gov/ct2/show/NCT03423342?term=nicotinamide+riboside&rank=3

  • Kknox
    Kknox, August 15,  2020  6:34pm EST

    Hello, 

         I am very sorry for the pain and worry you and your husband are going through.   I am an RN who has researched and followed my father-in-law's idiopathic heart failure for the past 3 years.  It sounds like from your post that your husband's heart failure is also idiopathic (unknown) cause.  Had your husband been on any medications in the year before his diagnosis of heart failure?  If so, would you share that list with me?  Has he ever been on a medication called gabapentin/neurontin/graylise?  I have some research I recently submitted to FDA medwatch.  
    Blessings to you and your husand

  • REC84
    REC84, August 17,  2020  11:48am EST

    Thank you for the reply and info amoeba. :)

     

    Kknox, thank you also! They are unsure of the cause as of now but we are still waiting on the genetic testing results. Our Doctor is leaning heavily towards the pesticides used at my husbands job being the cause. He hasn't been on any medications aside from some acid reflux medication (the name escapes me at the moment).

     

     

  • AZMiracle
    AZMiracle, August 17,  2020  12:55pm EST

    It's hard, confusing, and depressing to find out about having heart failure when you've worked hard to lead a healthy lifestyle. The first doctors could've been nicer about delivering the news and not scared you like that.

    I too was diagnosed with heart failure at 28 years old, I'm now 30. When I was diagnosed my EF was 10% and was on ECMO and the transplant list. Fortunately my body reacted well to the meds (same meds your husband is on - Entresto and Carvedilol) and I was taken off ECMO and didn't need a transplant after all. Entresto is ******* your body (low blood pressure, fatigue, etc.) but it works. I took Entresto for  2 years and it improved my EF from 10% to   59%. 

    Based on personal experience, it is important to be optimistic and patient. Things are not going to be the same as before the diagnosis but that's ok. The short term goal is to improve the ejection fraction.

    Now that I am almost 100% off meds I've started up again with exercise and trying to regain muscle mass. Weight is back up to normal levels. It just takes a little time. 
     

    My cardiologist (from Mayo Clinic) has advised against taking any supplements or vitamins since they are not FDA approved. So I just stick with getting the nutrients and vitamins from organic fruits, vegetables, nuts, fish, chicken, etc. 

    Your husband is lucky to have a supporting wife! Good luck to you and your husband. 

  • REC84
    REC84, August 20,  2020  10:54am EST

    AZMiracle thank you for sharing your story! I'm happy to hear your EF improved that much! That gives me a lot of hope. :)

  • VeeSA
    VeeSA, August 20,  2020  12:12pm EST

    Dear REC84...

    I could have written your post myself. I am 35 and my husband is 44 and just two weeks ago he was diagnosed with HF due to restrictive cardiomyopathy. It felt like everything we have worked to achieve for our future and for our 2 year old daughter has been in vain. We were also unfortunate to have had a very cold physician initially but thankfully we have found a wonderful new Cardiologist. We were also given the prognosis of 5 years but have met somebody who has been living with the condition for 9 years already. 

    Have you considered seeing a dietician to work out a precise eating plan for your husband's individual need? This is something I am currently considering as I also am unsure. My husband was never overweight but over the last few months he has lost almost all muscle mass whilst we thought he'd had a chest infection that effected his appetite. 

    I am sorry youre also going through this. Stay strong and positive. Best wishes on this journey. 

    VeeSA

     

  • REC84
    REC84, August 20,  2020  5:36pm EST

    Hi VeeSa, I'm sorry to hear that you are dealing with this as well & that you had the unfortunate experience that we had with a cold Doctor. 
     

    I actually spoke with a Dietician who's husband is actually going through HF at a young age as well. If you'd like I'm happy to pass some info along that she gave me. Feel free to email me at ruthie.catalano@gmail. 

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