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    • #25904
      Jen Cueva
      Moderator

      We are most often told to follow a low sodium or cardiac diet. As a PH patient, do you follow these recommendations? If so, what is one food that you wished you could indulge in more often but don’t because of sodium count?

      For me, this is a no-brainer. I love chips and pickles. See, I cannot name one if I had to pick between the two, chips would win. What about you?

    • #25928
      Sherri
      Participant

      Popcorn with butter and salt was my go-to snack before my diagnosis. I still indulge occasionally. I am really struggling with the low salt part of things when it comes to IPAH. I have not noticed much in the way of swelling, etc, but know that I am fooling myself because I have been on a daily dose of furosemide. I am still titrating up on meds, so my GI symptoms are presenting in a big way. I am hoping that as symptoms subside it will be easier to maintain a low sodium diet.

    • #25929
      Carol alexander
      Participant

      Oh pickles and chips for sure!!!

      Carol A

    • #25946
      Jen Cueva
      Moderator

      Hi @whitesandsgirl, oh that movie theater popcorn with butter and salt was a favorite, too.

      With the titration of your PH meds, can you ask your doctor to slow it for a while as your body adjusts? When I was titrating on different PH meds, I often had to wait an extra week or so to allow my body time to adjust. That did help me. I realize that we are all different.

    • #25947
      Jen Cueva
      Moderator

      Those two are certainly tough for me to stay away from. Do you limit these or just avoid them?

    • #25949
      Sherri
      Participant

      Thanks for the advice on titration Jen. I have slowed my titration from once a week to once a month since I started my Veltri last August. My side effects are much less severe, and some have disappeared, but the GI stuff just keeps on giving. The good side, I have lost 50 pounds in the last 15 months. I only have a few more levels of Veletri before I hope to be off my infusion pump and onto some kind of oral med. I have not asked too many questions about the which oral med. I figure it is what it is and I will deal with whatever challenges it brings when I get there.

    • #25952
      Jen Cueva
      Moderator

      Hi @whitesandsgirl, I am hopeful that once you transition off of the Veletri to an oral med, the gastric side effects will subside some. I am on Uptravi (selexipag) and have not had that many GI upsets since I reached my maintenance dosage.

      It is what it is, is undoubtedly a way to go in open-minded. I hope that whichever oral they chose, it will work better with your body. 50 lbs in 15 months is huge, did you need to lose weight, too? When I first started PH treatment just after diagnosis, I lost quite a bit of water weight. I was so swollen, but I could feel the relief once that happened.

    • #25975
      Sherri
      Participant

      Well Jen, I have a very strict primary care physician who touts a keto-type diet. I did need to lose some weight and had started a no-carb diet and lost about 15 pounds in the six months before I started on Veletri. Unfortunately, the rest of the weight loss is basically from GI side effects coupled with working in a classroom where you just can’t run to the restroom when needed. My go-to was minimal eating and drinking until around 3 p.m. each day so that I could be at home if things did not set well. I take furosemide daily, and while I have little swelling in my legs and feet, I seem to retain water in my abdomen. It is frustrating, but otherwise I feel fortunate that things are not worse.

      I went from 195 pounds to 146 pounds. Even though the conditions of the weight loss were not ideal, I do think it has done me good. My bloodwork numbers (in terms of BP, sugar and cholesterol) are better than they were a year ago. Now that I am at home I am eating more, but thanks to medications am also exhibiting fewer PAH symptoms, so I am more active and have been maintaining a lower weight. As a brand new empty-nester, I think I will be able to adhere to a healthy, low sodium diet more easily than before. A year ago I had three college-going 20-somethings living at home and was cooking for them several times a day. As of yesterday the last of our children has moved out of state. My husband is very supportive when it comes to my illness and I think with just the two of us I will be less tempted to cook/eat things I should not. I am hoping to land around 135 pounds and stay there. We will see…

      In terms of moving forward medically, I have no idea what to expect. I am setting my sites on reaching my titration goal on time, and keeping off weight through more exercise and a better diet. When I am tempted to eat something sodium rich I just think of the things I can’t do right now, that I expect to be able to do when I get to that point of optimum health…like trekking through Disney World, swimming at the beach sans-catheter, and having enough energy to dance at my son’s wedding. Those goals keep me motivated.

    • #25977
      Jen Cueva
      Moderator

      Oh @whitesandsgirl, I cannot begin to imagine working in a classroom all day with these GI side effects. Limiting your food consumption between those hours must have been difficult.

      That is a lot of weight, and I am sure that you felt some improvements after that, too. Some say weight loss did not help their PH symptoms. What would you say? Did it help overall? I read that your blood worked improved.

      Ahh, empty nesters, I am an empty nester and was diagnosed when my daughter was about 12. I did not think that I would see her finish middle school. Last year, she got married. It was so much fun as I was able to help them plan for their big day. That is a great goal to keep you on track. Those are the things that mean the most.

      Now without them being at home and cooking for just yourself and your husband should make things easier. I usually cook healthier options most of the time. My daughter is a dietician, so she is always giving me interesting ideas and things to try.

      Low carb and keto, I know can be tough on your kidneys, but you have done it before without issues, so it sounds like you are in good hands. I know several PHriends who do try lower carb options, not totally keto as they find that works best for them. It is often the case of trial and error, as you know that we are all different. Thanks for sharing and take care, Sherri.

    • #25982
      Colleen Steele
      Keymaster

      @whitesandsgirl you really should give yourself a pat on the back for your commitment to a healthier diet. It really does help when you have a supportive spouse. Hopefully, you can both help each other and you can reach your weight goal. However, like Jen said, I can’t imagine the classroom struggle you experienced. It’s impressive that you were dedicated enough to keep up the routine while fighting symptoms.

      When is your son getting married?

    • #25989
      Sherri
      Participant

      Thanks for all the support. My son is getting married next April, so that gives me almost a year to figure things out and continue to improve.

    • #25990
      Jen Cueva
      Moderator

      So true, @colleensteele, having a supportive spouse or family, is always helpful when trying to eat better.

      It sounds like @whitesandsgirl has already done a great job. I know that having your son’s wedding to look forward to is helpful and exciting! The time will pass so quickly, and I cannot wait to hear more about it as you attend in April.

    • #26002
      Rayetta
      Participant

      There are acutally several foods that I wish that I could indulge in. My top ones would be chips and salsa. I love dipping tortilla chips into salsa! I do really well watching my sodium, although I must admit that once I indulge it takes me a while to get back on track again.
      It is really hard when you live with someone and they aren’t really supportive of your dietary restrictions. I do pretty good for the most part.

    • #26013
      sue
      Participant

      I found sodium free pickles, so that helps, but what I would like not to worry about and be able to eat as much as I want is bacon.

    • #26015
      Colleen Steele
      Keymaster

      @sue-bouse-team sodium free pickles? Is there a brand that sells them? It’s funny that you mentioned this because my son recently asked me to buy a jar of pickles the next time I do food shopping. I told him, only if he eats them in moderation because of the sodium.

    • #26017
      sue
      Participant

      I have not gone out because of covid and found several places on the computer that I can send for salt free items, I do most of my shopping on line right now or have groceries delivered, so hard to find salt free at the regular grocery store, and only trust it if I AM looking at the ingredients on the package. The place
      I got the pickles from is HEART HEALTHY MARKET, it is a store online that has lots of salt free items, the pickles come dill and bread and butter, not liking dill I have the bread and butter variety. think they are pretty good.

    • #26018
      sue
      Participant

      Incidentally that is my college photo, I graduated over 55 years ago, so do not look like that anymore.

    • #26028
      Colleen Steele
      Keymaster

      Thanks @sue-bouse-team I will have to check it out. Unfortunately it’s the dill that he likes and he isn’t a fan of the bread and butter kind. Might try it out anyway. We have been doing our shopping on-line as well.

    • #26030
      sue
      Participant

      They have dill, but I do not like dill so did not buy it

    • #26031
      Colleen Steele
      Keymaster

      I thought you meant you bought it but didn’t like it. We will have to give it a try then. I’m like you though, I don’t like dill pickles but I love the bread and butter kind.

    • #26033
      Margie Novak
      Participant

      So many…. wanted a hot dog for the 4th but cannot have!! The sodium things is the worst. I like to eat at Red Lobster… don’t look at the nutritional menu for any restaurant Way too much like my chips and now have to eat low salt and no salt pretzels. And right now I really have to watch as my kidney numbers are bad so I am not the most pleasant person to be around!! I say sometimes “why should I suffer and eat things that I don’t really like”. Would love an Italian hoagie or pizza but no to that too… I am sorry if I made everyone hungry…. it did feel good to vent!!! Thanks all and hang in there PH warriors we will survive!!!

    • #26043
      Jen Cueva
      Moderator

      Hi @rayetta-meverden-johnson, nice to put a face with your name. Thank you for adding a pic.

      I am with you, chips and salsa can be the devil for me at a Mexican restaurant. I always say to my hub y when we were discussing Mexican restaurants, which one has the best chips and salsa? He always reminds me about the time the basket is empty that I ate way too many, hehe. So, I can relate, that is so tough once you start. Early in my PH diagnosis, I requested them not to bring me chips. Then, I would count them for a while, no more than 10 chips, hehe. Is it wrong that I am now hungry and craving chips and salsa at 9 AM?

      You mention that it is more troublesome when those at home are not supportive and helpful with your dietary restrictions, which makes a huge difference. How many are at your home? Do you tend to do the cooking?

    • #26044
      Jen Cueva
      Moderator

      Oh no, @sue-bouse-team, I have never seen sodium-free pickles. That is a great resource to share with us all, the online market that sells sodium-free items. Do they have bacon? -Hehe, Do you find that that online market offers reasonable prices?

      I love your “vintage” photo, too.


      @colleensteele
      , I found it interesting that Cullen asked for pickles. Was this before the hospital? I often crave pickles and pickle juice even when I am dehydrated, and my sodium and other electrolytes are low. Does he like dill? I read that you like the bread and butter pickles, I usually don’t like those, but my mom makes some that I enjoy some years.

    • #26045
      Jen Cueva
      Moderator

      Oh no, sweet @margie-novak, it sounds like you have to watch your diet. Living with chronic kidney disease, I find that they are always taking something away from me. This is certainly no fun, and I also tend to get “hangry.”

      My daughter, who is a dietician, helps me with suggestions and also reminds me that if I take a bite to satisfy a craving, that is usually enough. Does that always work? No, but more than not, it does for me.

      I have not eaten at Red Lobster in years, but those biscuits are sounding good about now. The nutritional information at restaurants is useful to open our eyes to just how bad these foods are for us. Sadly, they do not taste bad! But knowing what my food is being cooked in, like nothing cooked in butter and they often use salted butter, so that is a double whammy. My body often reminds me quickly of the foods that it is not used to. During the week and mostly COVID, we do great as I cook at home and control what is in our food. Do you cook much? How are you and your hubby doing? Do you have anyone who helps y’all?

    • #26063
      sue
      Participant

      I spend several hours every day cooking to be sure there is no salt in my food. I try to cook enough that I have food for several meals. I usually cook something and then go sit down and then up and cook some more. and then sit down, I do all my chopping on a cutting board I carry to the living room so I can sit and do the work I get very out of breathe. I am by myself, so can eat whatever I can cook or have in the house. I had to buy a dozen of somethings instead of one or two. so my can goods are stacking up. even got low salt tuna cans. but they make a good lunch. I just like to know how much salt is in things. but a corner of the dining room is the new pantry, have boxes of canned goods. there, I will have enough beans for at least a year if not longer.

    • #26064
      sue
      Participant

      I am sure any food without salt is more expensive than regular. but since I do not trust precooked food and am not sure what the sodium content is, I try not to eat it and use my money on food that I can eat. A bit off subject. I had a ground beef patties the other day with onions that were cooked in a pan until clear and cut up sun dried tomatoes mixed in the ground round before cooking, it was really good. If the tomatoes have too much salt for you, you could dry the tomatoes yourself.

    • #26071
      Colleen Steele
      Keymaster

      @margie-novak…Hoagie!!! Are you from Philly are South Jersey? That’s the only time I hear a sub called a hoagie. I grew up in South Jersey. I would love a WAWA hoagie right now or a Philly cheese steak. All high in sodium.

    • #26072
      Colleen Steele
      Keymaster

      @dawnt those patties sound delicious! My son LOVES tomatoes. I will have to give it a try!

    • #26073
      Colleen Steele
      Keymaster

      @dawnt your commitment to a low sodium diet is impressive, especially when preparing meals is hard on you physically. To be honest, we haven’t been as sodium conscious as we should have been until now. With Cullen’s kidney disease we need to become more attentive to his diet.

    • #26083
      Jen Cueva
      Moderator

      Hi @sue-bouse-team, Yes, often, some of the foods that we need are a bit more costly. It also sounds like you explore options and know what you need for your body. That is amazing! I plan to check out that market. I will also share it with my daughter, who is a registered dietician, I am sure she has not heard of it, or she would have told me.

      I also do most of the cooking at my house. I have a foldable stool that I use for shopping and prepping things. If it is a meal that takes a while, I will break it up into sessions, too. I also find my Instapot helpful. Thanks for sharing your tips.

      It sounds like you are prepared with canned goods for some time. Those burger patties sound good. Do you mostly do low sodium or follow any other diets?

    • #26084
      Jen Cueva
      Moderator

      @colleensteele, now you and @margie-novak have me craving a good Philly hoagie. I can picture it. I do not know what WAWA is but I bet I would like it, hehe.

    • #26108
      sue
      Participant

      I am a Californian, born and raised here, my mother was also, but my father was born in New Jersey but came to California when he was 10. Being allergic to wheat i just try to use a gluten free diet along with the no sodium or as little as I can cook with. I just know I feel better if I follow the diets, I do cheat once in awhile and get apiece of bread, usually stolen from my grandchildren, if they have something good, I steal enough to make a sandwich. I really miss not having good bread, most gluten free bread is really high in salt, do I cheat on the wheat, if the salt is low enough.

    • #26121
      Rayetta
      Participant

      @jenc Hi, Jen! You asked me how many people were in my household. There are two of us. We alternate cooking. I share an apartment with my boyfriend. It is really hard because he doesn’t eat fruits and veggies. When he cooks he doesn’t usually consider sodium. I have reminded him, but it just doesn’t seem to sink in, therefore I don’t have much support at home with my low sodium diet. He also buys a lot of not so good foods and I can only resist for sometime. I have talked with him, but he doesn’t seem to get it. It will probably come down to each of us cooking our own meals. I don’t like having to do that, but I know how important it is for me to cut way down on my sodium and when I do I always feel better, too.

    • #26092
      Janet Blumenshine
      Participant

      Even though my doctor recommended watching my salt, my PAH doesn’t seem to be affected by salt. Now it is mostly my mouth that burns when I eat salt so most things don’t tempt me anymore. But, I crave sweets! I have had to cut out so many things that I once loved (coffee, tomatoes, pizza, etc) because of stomach issues caused by scleroderma. Popcorn with unsalted butter and canola oil are my “salty snack”. Or homemade carmel corn..the sweet snack. I have last 30# so don’t need to watch my weight for that reason. I am on the max doses of nifedipine, opsumit, Revatio and Uptravi. So, far so good, most days. Hope it continues.

    • #26131
      Colleen Steele
      Keymaster

      Thank you @jblum for sharing your temptations with salt and sweets. Finding balance is so hard but it sounds like you are doing a good job. If you can enjoy them in moderation that is better than gorging on the treats daily. My son loves salt and it’s a challenge for him not to reach for salty treats every day.

      It’s good to hear that treatments,for the most part, are working for you. May that continue!

    • #26142
      Brittany Foster
      Keymaster

      Such a good topic ! I LOVE SALTY food ! Especially when I am around my period time, the craving becomes even worse. Honestly, my craving for salt really has increased and increases when I use my lasix for some reason. When I am dehydrated, craving salt is actually one of my warning signs. Anyone else like this? Their body starts craving something when you are starting to lose electrolytes or potassium/ another vitamin? Anyways, I would have to say that Chinese food is my number one FAVORITE food and I miss it so much! Especially the noodles that are packed with salt! I get swollen for DAYS after eating chinese food. But every once in awhile I do indulge but my body pays the price for it

    • #26148
      Colleen Steele
      Keymaster

      Thank you for pointing that connection out @brittany-foster. Cullen loves salt to begin with and I’m wondering now if his craving increases with dehydration. I’m going to have to talk to him and make him aware of this possibility. I could easily see him splurging on something salty when he’s already becoming dehydrated.

    • #26155
      Margie Novak
      Participant

      Brittany, funny you should say Chinese as I am the same way! Everytime I see the heart doctor he always says “and no Chinese food”! I would give anything to use my points (I am on a 2,000 sodium) to have an egg roll!!! Right now for me I am craving pizza!! I am going to use my points for a slice in the near future!!!” take care

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