First trip after CHF diagnosis

[AllThingsMickey4]

Hi everyone. I’m new to this board in hopes of helping my dad. He was diagnosed with congestive heart failure in June. It’s believed that he caught some kind of respiratory virus that infected the left side of his heart shortly after he and my mom took a last minute trip to Disney last December. He spent Jan-May on and off antibiotics and inhalers as they tried to treat his shortness of breath as pneumonia. Eventually he started coughing up blood in the ER, went delirious to the point where he thought the year was 1889, and his legs were the size of basketballs.

He was medically evacuated by airplane to MUSC (4 hours away from us) where he spent 5 days in the ICU and 5 more on the heart floor. The docs told us he was hours from death. During his 10 days at MUSC he lost 40+ pounds from all of the fluid they removed from his lungs and behind his liver (it was close to 2 liters per day while he was in the ICU).

Anyway, we are headed to Disney December 1st and this will be his first big trip after the whole incident. I can tell he is getting nervous about keeping his sodium below 2000 mg a day. He and my mom have been making virtually everything from scratch in order to keep his diet as salt free as possible.

His heart is back up to 35% from 13% when he was admitted to MUSC... Which is huge for just 6 months. I just don’t want this trip to cause him to go backwards. Everything we’ve seen online says to tell the hostess about the low sodium diet when we check in at the restaurants, but I guess we are just nervous that they won’t take it seriously Salt is scary because of how much is hidden in things we eat everyday!

I guess I’m looking for tips, advice and reassurance that he can make it through 8 days without any heart failure episodes. When they eat out at home they go places where they can find the nutritional info online. We have already booked ADRs for all table service restaurants and will be avoiding counter service

 

[arminnie]

Six years ago I was diagnosed with CHF after a 10 day stay in ICU where I was not expected to live. My original issue was sepsis which caused all of my organs to begin failing. I remember those days. And how restrictive that diagnosis was. Fortunately for me I now longer am considered to have CHF - but I have a great appreciation for those who deal with it.

I got used to cooking with zero salt. People can add it afterwards if needed. Like your parents I started making EVERYTHING from scratch - salad dressing, chicken stock. We feed our security guard in our condo each night and he has been in and out of the hospital with CHF. I feel comfortable with the food I give him. I would be clear to all servers that salt free is absolutely necessary. Because there will be sodium in some natural ingredients.

One thing I would do is to carry salt free snacks at all times. You never want to be in a position where he needs something to eat, but can't be sure of what is available. An apple or orange or even a banana is fairly easy to carry.

I hope he continues to make great strides in improvement like he's been doing. Go - have a great time and just eat to live not live to eat.

 

[AllThingsMickey4]

Six years ago I was diagnosed with CHF after a 10 day stay in ICU where I was not expected to live. My original issue was sepsis which caused all of my organs to begin failing. I remember those days. And how restrictive that diagnosis was. Fortunately for me I now longer am considered to have CHF - but I have a great appreciation for those who deal with it.

I got used to cooking with zero salt. People can add it afterwards if needed. Like your parents I started making EVERYTHING from scratch - salad dressing, chicken stock. We feed our security guard in our condo each night and he has been in and out of the hospital with CHF. I feel comfortable with the food I give him. I would be clear to all servers that salt free is absolutely necessary. Because there will be sodium in some natural ingredients.

One thing I would do is to carry salt free snacks at all times. You never want to be in a position where he needs something to eat, but can't be sure of what is available. An apple or orange or even a banana is fairly easy to carry.

I hope he continues to make great strides in improvement like he's been doing. Go - have a great time and just eat to live not live to eat.

Wow what a scary situation! The whole ordeal has been traumatic for my whole family. My dad actually says he doesn’t remember most of it.. he really didn’t “come to” until about day 4 in the ICU. Unfortunately I still have times where I think about the call I got about his medical evacuation, telling him I loved him even though he didn’t know who I was and not knowing if he would make the plane ride. I still get nauseous thinking about it.

Definitely a good idea about the snacks! My mom mentioned today that she wished we got a Villa so we could cook some low sodium food. Too late now, but something to keep in mind for the future!

 

[Lauren in NC]

Do you have table service reservations scheduled, or are you planning on doing counter service? When I had to do this (quite a while ago for a friend, for a different dietary issue) I was able to send a list of ADRs ahead of time to the Dining folks so they could alert the kitchens. Also, they were able to give me a few recommendations for CS that would work best for her. It was very helpful, as it turned out a few of the places we had hoped to eat at would have had very limited options for her.

 

[pezaddict231]

I have CHF, was diagnosed over a year ago at 36, we don’t really know the cause but they suspect viral. They initially thought I had bronchitis and pneumonia but after all the meds I was still having trouble breathing. I’m glad your Dad is doing better, that is a huge increase in EF in a very short time. Anyway, I don’t let CHF stop me from going to Disney, if anything I’m determined to go more bc things can change in an instant. But it’s definitely a different kind of trip to be sure.

I would recommend a wheelchair/ECV. He can park it and walk around but it’s a huge comfort to have someplace to sit. I struggled with it the first time but realistically I cannot walk several miles a day anymore. It will help with the fatigue too which is likely going to be his biggest issue.

In terms of diet, in the beginning I cooked everything myself and had a lot of anxiety about eating out. Disney is actually very good about it but I do find some of the chefs don’t really understand low sodium. They think of it as salt they add so you may need to educate them. I checked “other” under dietary requests on my reservations and that will trigger the chef to speak with you. Table service is his best bet, the CS locations can’t really accommodate as many things are already prepared. Be prepared to give suggestions to the chef and ask questions. I will usually say “low sodium bc of a heart condition” so they know how important it is. If his meal tastes salty tell him not to eat it. I have been served things that were salted (usually veggies). Ohana has been wonderful every time I’ve gone, I’ve also had good luck at Hollywood and Vine and Garden Grill. At the buffets they can make him something separate and that’s usually what I request. I usually ask for grilled chicken or steak without salt, plain white rice and steamed/sautéed veggies.

Have a great trip!

 

[DisneyOma]

OP, could you get a place with a kitchenette and then do a grocery run? That way you know that there will be food he can eat, at least back in the room.

 

[Haimia]

Had diagnosis of CHF along with pneumonia last year. Admitted to the hospital four days after returning from WDW November 28th. Due to sjorgrens, had a difficult time with the pneumonia and was in hospital for 12 days. Still, nothing close to what your dad went through!

Good luck with the trip and watching the food for your dad. Hoping all goes well for you!

 

[AllThingsMickey4]

Just wanted to update everyone on our trip! We had great experiences at pretty much every TS restaurant we went to (we didn’t do any CS). Some of the chefs really took the low/no sodium thing very seriously, others were sort of confused at first and acted as though they had never heard of a sodium restriction We definitely had to explain to some of them that it was more than just “no salt added.”

Ohana and Jiko were probably the best of our trip as far as the sodium issue is concerned. The chef at Jiko cooked my dad’s steak himself with no salt or seasoning and gave him plain vegetables. He also fixed him a special salad for an appetizer. He was really nice and understanding in general. I’m so glad this was our first meal of the trip because it definitely calmed my dad’s nerves. At Ohana, the chef came out and said he would take care of my dad. Well my dad got a HUGE garden salad all to himself and then a massive bowl of plain rice, veggies, shrimp, steak, and chicken all without salt or seasoning. His meat actually tasted better than mine - mine was SOOO salty.

Mama Melrose was suprisingly another great place for low sodium. The chef said the spaghetti with grilled chicken was a great choice because they make the sauce fresh and they don’t cook their pasta with salt.

California Grill brunch was great. The chef made him an apple salad for an appetizer and he was able to eat yogurt and some sushi from the buffet. He had a veggie omelette with no cheese for his entree. And some of the desserts were salt free (I believe the macaroons and fig cookies).

One of the biggest disappointments was Spice Road Table (my dad said his steak was still salty) and Homecoming. The waiter at Homecoming was rude about getting the manager to come speak to us - he said pretty much everything there is loaded in salt like there wasn’t anything they could do. We told him we are from S.C. and are around “southern” food every day, so it can be done. My dad ended up getting the burger (their meat isn’t pre salted) and said it was very good. However, it took us over an HOUR to get our food.

Most of the places did take him seriously, which was a relief. We didn’t speak to the Chef at every TS, but the server would always ring the meal in under an allergy to make sure it was communicated down the line.

I think my dad only gained a pound the whole 8 days.. which is awesome considering he ate a lot of steaks and burgers We also did over 55 miles in 8 days, which is huge considering at the end of May (right before he was hospitalized) he couldn’t walk down the driveway without being out of breath. He didn’t have any shortness of breath, although we did take a more leisurely pace and slept in a few days because his meds make him tired.

We had a great time overall (minus the crowds), and I think it was good for my parents to have a vacation after everything we’ve been through this year. It’s great knowing my dad can still go to his favorite place!!

 

[pezaddict231]

Glad you had a great trip! Ohana is really the best and they take it so seriously which is nice. I'll have to try Mama Melrose too! Good to know about Homecoming, I've wanted to try it but been concerned about what I could actually have.

 

[lollipoplinds]

Just wanted to update everyone on our trip! We had great experiences at pretty much every TS restaurant we went to (we didn’t do any CS). Some of the chefs really took the low/no sodium thing very seriously, others were sort of confused at first and acted as though they had never heard of a sodium restriction We definitely had to explain to some of them that it was more than just “no salt added.”

Ohana and Jiko were probably the best of our trip as far as the sodium issue is concerned. The chef at Jiko cooked my dad’s steak himself with no salt or seasoning and gave him plain vegetables. He also fixed him a special salad for an appetizer. He was really nice and understanding in general. I’m so glad this was our first meal of the trip because it definitely calmed my dad’s nerves. At Ohana, the chef came out and said he would take care of my dad. Well my dad got a HUGE garden salad all to himself and then a massive bowl of plain rice, veggies, shrimp, steak, and chicken all without salt or seasoning. His meat actually tasted better than mine - mine was SOOO salty.

Mama Melrose was suprisingly another great place for low sodium. The chef said the spaghetti with grilled chicken was a great choice because they make the sauce fresh and they don’t cook their pasta with salt.

California Grill brunch was great. The chef made him an apple salad for an appetizer and he was able to eat yogurt and some sushi from the buffet. He had a veggie omelette with no cheese for his entree. And some of the desserts were salt free (I believe the macaroons and fig cookies).

One of the biggest disappointments was Spice Road Table (my dad said his steak was still salty) and Homecoming. The waiter at Homecoming was rude about getting the manager to come speak to us - he said pretty much everything there is loaded in salt like there wasn’t anything they could do. We told him we are from S.C. and are around “southern” food every day, so it can be done. My dad ended up getting the burger (their meat isn’t pre salted) and said it was very good. However, it took us over an HOUR to get our food.

Most of the places did take him seriously, which was a relief. We didn’t speak to the Chef at every TS, but the server would always ring the meal in under an allergy to make sure it was communicated down the line.

I think my dad only gained a pound the whole 8 days.. which is awesome considering he ate a lot of steaks and burgers We also did over 55 miles in 8 days, which is huge considering at the end of May (right before he was hospitalized) he couldn’t walk down the driveway without being out of breath. He didn’t have any shortness of breath, although we did take a more leisurely pace and slept in a few days because his meds make him tired.

We had a great time overall (minus the crowds), and I think it was good for my parents to have a vacation after everything we’ve been through this year. It’s great knowing my dad can still go to his favorite place!!

Were there certain rides that you guys avoided? I’m going down in September with my dad who has CHF. He was in the hospital at the beginning of the year with a 5% Ejection Fraction and in the matter of three months was able to get his EF to 45%. Trying to get a good idea of what’s best to avoid.

 

[DisneyOma]

Ohana and Jiko were probably the best of our trip as far as the sodium issue is concerned. The chef at Jiko cooked my dad’s steak himself with no salt or seasoning and gave him plain vegetables. He also fixed him a special salad for an appetizer. He was really nice and understanding in general. I’m so glad this was our first meal of the trip because it definitely calmed my dad’s nerves. At Ohana, the chef came out and said he would take care of my dad. Well my dad got a HUGE garden salad all to himself and then a massive bowl of plain rice, veggies, shrimp, steak, and chicken all without salt or seasoning. His meat actually tasted better than mine - mine was SOOO salty.

Just an FYI - most frozen shrimp is soaked in a salt water bath before freezing, to keep it from drying out. My mom has been diagnosed with CHF, and isn't supposed to eat shellfish or red meat (the bad animal fats need to be avoided as well as sodium levels- at least that's what we were told). She doesn't listen though, and is in pretty bad shape - bad enough that she couldn't do a Disney trip. Hopefully your father is in better shape!

 

[AllThingsMickey4]

Were there certain rides that you guys avoided? I’m going down in September with my dad who has CHF. He was in the hospital at the beginning of the year with a 5% Ejection Fraction and in the matter of three months was able to get his EF to 45%. Trying to get a good idea of what’s best to avoid.

He now stays away from most of the “bigger” rides like Everest, Tower Of Terror, and RnRC. He still does FoP, Slinky Dog, Big Thunder, Mine Train. We actually just got back from a trip at the beginning of June where he didn’t stress the salt issue at most of the restaurants (even though he should) and he didn’t gain a single pound in the 8 days we were down there (which means his heart must have been working pretty good to handle all the sodium). He was back to 45% in April, so sounds like our dads are in similar situations! Just make sure the heat doesn’t get to him- that was the only issue with our June trip.

 

[DisneyOma]

He now stays away from most of the “bigger” rides like Everest, Tower Of Terror, and RnRC. He still does FoP, Slinky Dog, Big Thunder, Mine Train. We actually just got back from a trip at the beginning of June where he didn’t stress the salt issue at most of the restaurants (even though he should) and he didn’t gain a single pound in the 8 days we were down there (which means his heart must have been working pretty good to handle all the sodium). He was back to 45% in April, so sounds like our dads are in similar situations! Just make sure the heat doesn’t get to him- that was the only issue with our June trip.

What does weight gain have to do with sodium intake? If you are thinking water retention, well, there's a lot of sweating going on down at WDW