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 Elite Veteran
Posts: 806
 
Location: Arkansas | Many, Many Prayers..
My sister is a dietician.. A Very Good and Thorough One.. If you can find one like her, they should be able to help you and discuss with the doctors. I know many don't take everything into consideration and advocate or collaborate with the doctors then monitor the food provided and consumed but they should (or she does, anyways.) If he is in the hospital, they should have a dietician looking at his charts. Or request to talk to one at the hospital. I would at least get him on Ensure. I know my sister recommends this a lot for weight gain and for those who have trouble stomaching many calories at once.
I would document, document, document and request for all doctors to meet on his situation. 1-3 lbs a day is alarming. God bless you and your husband. I will be praying for healing. |
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 Extreme Veteran
Posts: 302
Location: Missouri | musikmaker - 2014-04-02 10:24 AM
cheryle, bowel function is normal now, his creatins come back good (kidney's)...I'm sure it's a matter of getting the meds right. They did have him on 40mg lasix, I cut him down to 20 until his appt, dr agreed...then they took him off it completely, however, he's still on spironolactone which helps the body retain potassium & lisinopril for hbp which also keeps the potassium up...
I've read & studied so much of the meds...just trying to connect things myslef so I can get the doctors on the same page. Worse than herding cats...much worse!
First off I will put you and your husband in my prayers as it sounds like you have both been through a lot without a whole lot of answers.
Spironolactone is a potassium sparing diuretic which as you mentioned is compounding the issue of high potassium which can lead to more heart problems such as disrrhythmias. The lisinopril is an ACE inhibitor that prevents constriction of the blood vessels and in turn promotes dilation to decrease the blood pressure and it also works to decrease sodium and water retention. My suggestions would be to start a daily journal that includes a daily weight taken prior to breakfast, food and amount eaten, and the medications he received and at what time also record any abnormalities that occurred like confusion or dizzy spells. As far as nutrition, try to maintain a diet lower in fat, sodium, and potassium, but work to maintain a well rounded diet split into frequent small meals since he can't handle much food at once. Do a search for potassium high foods so you can get an idea of what is good to avoid or eat in small amounts. With his difficulty sleeping that could be related to the excess fluid putting pressure on his lungs when he lies down. He could try sleeping in a recliner or with extra pillows and see if it helps at all, but definitely tell his physician if this helps so they can understand more what is going on. Also teach your husband to take his time going from lying to sitting to standing or when bending over to standing up as the lisinopril can cause a rapid decrease in blood pressure leading to fainting or dizziness.
I really hope that his physicians can get on the same page and find the right combination of medications to help him feel at his best. |
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 Max is Back
Posts: 6795
  
Location: Flat Rock,IL | Prayers.  |
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 Looking for Lady Jockey
Posts: 3747
Location: Rodeos or Baseball games | So sorry you are going through this. Sending prayers |
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 Nicknameless
Posts: 4565
Location: I can see the end of the world from here! | Thanks...each of you for your prayers & sharing info...it's much appreciated!
We've thought of the ensure...it does have a lot of sodium in it, but, I'm going to ask his dr about it tomorrow.
One of the heart dr's called this last hour, too, and said to eat! Even a little salt at this point would be ok we just don't want to 'see-saw' the other way. He also said to withhold the spironolactone...
This has been such a long, confusing road...we've gotten to the point where we don't even try to guess what's going on...we want facts! Lol! A lot of surprises. And a huge learning curve...boy, I know more than I ever wanted to know about these things, just feel like I must be missing something, maybe patience? We want our life back!!!
Runnin LC: We do keep a daily journal of weight, blood pressure, pulse & O2 levels...it's very helpful as you said! He doesn't have a hard time laying flat anymore...he's so dried up! It's just getting the meds right & putting on some weight, gaining strength. He asked yesterday what the point was of not eating all these 'bad foods' when you're going to die of starvation anyhow...lol.
I just fixed him some bacon & eggs (no salt), piece of wheat toast w/peach preserves...yup. He ate...he's napping. Whew!
Thanks again...I just want to say that throughout this saga we've seen so many people who are suffering much worse than us...and heart failure is not just for 'old' people! We've seen the helocoptors bringing in the injured, the young...it's so sad. Really makes you stop and give thanks for all we have...it's just a part of living & no matter what happens we are grateful to our Creator for this wonderful experience on this planet!
It has helped me tremendously just to get it in writing & off my chest...funny how we can feel so alone during times like these and yet, I have not shared this on FB...I must be weird. Of course family is supportive...we're just not very knowledgable about these things! God Bless All!
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 Veteran
Posts: 224
Location: So Cal | No advice, just prayers and support from someone who knows how it goes to be a medical advocate for someone going through way more issues than they should be. My bf is in his 20s with several chronic issues, and we have learned that often you just have to know when things aren't right, do your own research and be persistent until the doctors will do what needs to be done.
Just make sure you take care of YOU, as well, trust me, I know how all of this wears you down! Prayers for BOTH of you! |
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 Elite Veteran
Posts: 984
Location: Southwest Minnesota | rodeomom3 - 2014-04-02 10:36 AM lonely va barrelxr - 2014-04-02 10:02 AM You need a medical advocate -- but YOU may have to be that person!
All these medications are researchable online. Do it. Print or write it all out. Connect the dots. Call the prescribing doctors on anything that doesn't sound right. Question EVERYTHING. Make them explain it to you. You and your hubby are the paying customer here, you are not out of line questioning and demanding explanations. Get second opinions if you need to.
My sister and I had to sit on the rehab facility daily, sometimes more than once a day, to keep my moms medications right. I spent a lot of time online researching. My sister has the education to understand this stuff so she was prime, but I got pretty educated on a lot in a short time too. You don't have to understand the chemistry - contraindications and side effects are written for every medication.
MANY prayers for a smoother time ahead!!
Agree! You need an advocate and it may need to be you. Too many Dr.'s who aren't communicating. The hospital should at least have a Social Worker who can help you get what you need for you and your husband. Talk to your nurses, they a lot of times have a better grasp on the patient as a whole then your docs will and may have some suggestions. Sorry you are having such a rough time. Prayers for you and your husband. |
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  The Original Cyber Bartender
Location: Washington | Have you tried jucing.
Many prayers, can't imagine going through what you both have. |
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 Hawty & Nawty
Posts: 20424
| Praying!!!!!
Can you possibly check into those high calorie shakes that wiegh lifters drink? They are usually easy to digest and packed with calories.
Just a suggestion. (hugs!) |
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 On the Countdown
Posts: 2934
Location: Texas | Many prayers. We had to stay on the doctors to figure out what was wrong with my grandmother a few years back. |
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 Googly Goo
Posts: 7053
| You're in my prayers, Musik. |
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 Forever Young
Posts: 6768
Location: relocated to Texas | Many prayers. |
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Sideways Riding Expert
Posts: 11371
Location: ND--it snows, it floods, it snows, it floods | What about protein smoothies? Would he be able to get something like that? Protein powder, ice, water or milk with maybe some sugar free jello for flavoring? Just a thought....many prayers! |
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Nicknameless
Posts: 4565
Location: I can see the end of the world from here! | Things to try! Thanks! The biggest obstacle rigth now are his taste buds...I hate to say this, but, I really feel for his mama if he was this persnickety as a child...and I can bet he was! Lol! I feel bad cuz he's not normally so picky...I'll just have to threaten him with feeding tubes...
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Sideways Riding Expert
Posts: 11371
Location: ND--it snows, it floods, it snows, it floods | musikmaker - 2014-04-02 1:53 PM Things to try! Thanks! The biggest obstacle rigth now are his taste buds...I hate to say this, but, I really feel for his mama if he was this persnickety as a child...and I can bet he was! Lol! I feel bad cuz he's not normally so picky...I'll just have to threaten him with feeding tubes...
With the protein shakes you can add fruits and what not. I have a bunch of recipes I can email you if you pm me your address. |
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 Star Padded Honey
Posts: 8890
Location: NW MT | no ideas or suggestions, just prayers for you both! |
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Cold hands and Warm Heart
Location: oklahoma | Prayers for you and all involved to get this figured out and husband back on the road to recovery. |
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The Advice Guru
Posts: 6419
| Sounds like things are looking up.
To obtain maximum heart function, docs in my area like to use a ace inhibitor (linisopril) and beta blocker (lopressor/metoprolol). This might be worth asking your doc about.
Also any vasovagal manouever (bearing down, lifting heavy loads, holding breath, etc). This can cause the heart to slow down causing people to pass out, blood pressure to bottom out. Just be aware, this can happen any time.
Also for the eating bacon is still high in salt, but pick your battles. I am glad he ate.
There is a spice called Mrs Dash that we give our cardiac patients instead of salt, it actually is tasty (I use this instead of seasoning salt in my gravey now) I suggest trying it.
If his cholesterol is normal red meat a few times a week won't hurt him, I suggest stocking up on chicken. Barbecue, bake are all healthy ways. Try and stay away from deep fried food, if your husband likes salad, have this with each meal. Rice, pasta are good to eat.
Potato and banana are high in potassium so I suggest try and stay away from eating these daily.
If you have any more questions you can pm me, I am willing to help in any way I can.
Good luck, and prayers sent your way |
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 I Don't Brag
Posts: 6960
| I can't help with the medications and such but I HIGHLY recommend getting him some digestive enzymes and maybe probiotics. We lose the ability to synthesize our own digestive enzymes as we age, the biggest reason why you do not see very many obese 80 and 90 year olds.
I was recommended to take digestive enzymes by my Doc years ago when he thought that I "might" have gall bladder issues. This was later seconded by a nutritionist and naturopath who told me that I was missing the enzyme I needed to break down proteins and was a major factor contributing to my sometimes severe hypoglycemia.
There are many kinds of digestive enzymes, for breaking down of proteins, fats, cellulose, dairy etc. It can't hurt. If he is missing any of these, the food is going in, then out without being broken down in to usable fuel for his body.
Prayers and hugs. |
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 Love Me Some Robert Redford
Posts: 2335
Location: WV | |
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