Diet Share

[Brittany Foster]

Hi Anna!
I’m sure everyone’s diet looks different depending on how much they can eat during a day. I know for me, my diet varies from day to day depending on my physical symptoms and level of bloating. Sometimes my main meals have to consist of protein shakes with fruit and greens mixed into it or a high calorie protein bar. I try to stick with a higher protein diet and make sure to get lots of fruits and veggies in there. I usually have a banana every day because of medications I’m on and the risk of having lower potassium because of some of them. I don’t have many carbs through the day. Mostly for breakfast in the morning and sometimes I will have rice with lunch if I can stomach it. I am pretty petite and as I said, it definitely varies day to day depending on my physical symptoms. I have seen a few nutritionists who have helped me with a diet plan to make sure I am giving my body the correct nutrients from different food groups and have directed me as to the amount of protein I would need for my body weight. Maybe ask your doctor if they have suggestions on a dietitian who has worked with people with lung disease or heart disease.

[Anna]

Thank you from your responce,

I am in the waiting process to see another dietitian. As for it was only 7/6/2018 was my diagnoses. It has to go through the doctor to my insurance and then my insurance will approve or deny my treatment. They tend to deny then approve. I have taking insurance to an appeal court process over 4 times in 8 years.
Therefore, I was asking just seeing how others ate so maybe I can take something they do and modify it within my diet.

GeorgeAnna

[Brittany Foster]

Keep me posted Anna! Would love to hear if you get approved for that. I hate how it has to be so difficult with insurance companies to get something that has the potential to help you live your best life with this illness. I hope it goes through for you!

[Anna]

Me too. I did get approved for my Cardiac Heart Monitor yesterday 7/17/2018 but not a dietitian. The cardiologist is going to try again if not I have to go through an appeals process again.

However, I was amazed my insurance did not give me an ounce of issues with the Cardiac Monitor I go in to get it next week.

You would think with how many time I have gone through the appeals process and taking them court and won every case just baffles me that they do not have a red flag next to my name by now. My stress that my insurance company causes is not helping to my medical condition either. I have no problems with Medicare it is Medicaid Arizona State I am constantly on the phone with government officials filing complaint after complaint due to Medicaid issues. Got off the phone with Human rights at 4:05Pm today and Constituent Services Liaison at Arizona Legislative office right at 4:59pm today.

I just wish this was an easier processes. I just cannot understand how some of these people get jobs working with the public with how they treat people.

[Charlotte Gilbert]

The PH meds and our high heart rates will have us burning calories and depleting our vitamins ( vitamin d especially… mine was an 8 .. the norm is 30 to 100).. you can get malnourished really quickly. I am trying to get 1750
Calories a day with a protein muscle milk shake that adds 650 calories ( not a meal substitute) … waiting to get my nutritionist appt at Duke soon for a more qualified and targeted plan…

[Kathleen Sheffer]

Yes, I struggled most with weight gain. My doctors prescribed all kinds of protein shakes and supplements: those were disgusting, and didn’t even have significant caloric counts. My mom started encouraging me to drink sodas and ice cream shakes. Teenage dream come true! Except I didn’t want to eat and felt nauseated most of the time. Since my transplant I’ve interacted more with cystic fibrosis patients, who might even have more difficulty keeping weight on than we do. My friend @brad-dell is my personal guru on weight gain. He shares a couple snack recipes in this post. Let us know what you come up with, and what you like best!

[Brittany Foster]

Hi Kathleen,
YES! from my GI conditions and the nausea after eating and GERD I have a hard time eating. They recommended doing shakes at one point but the cream would just further mess with the GI stuff like a lot of burping and diarrhea (I know gross info). Some days are definitely harder than others to get the right amount of food and I know that I probably don’t eat nearly as much as I should because I get bloated so easily ! most days it feels like I am forcing myself to eat vs actually enjoying what I am eating. This can be one of the hardest things to manage during the day! Nutrition is so important to healing and keeping as healthy as possible too.

[VK]

I think that diet’s a pretty personalized thing — one of the few parts of our health lives that we get to personalize for ourselves. So I like this post.

I’m in the opposite weight direction from most of you and it involves trying to keep the weight of someone with my lung capacity. Meaning that being 140 lbs at 5’8″ isn’t healthy — I’m ideally at 110 lbs. to match someone at 4’8″.

My diet is personalized and has nothing to do with PH but more to do with having prediabetes (which would otherwise be full on diabetes without diet intervention). So, I end up being the resident low-carb fascist, but at least I can maintain healthy blood sugar levels (along with a below normal skeletal body weight).

[Brittany Foster]

VK,
you are so right! It is definitely something that is very personalized according to each individual needs and coexisting conditions. There are probably many who are on the “heart diet” like low sodium food especially if they are taking diuretics. Other than that, like with your situation with pre diabetes, it is best to stick to the plan of the nutritionist ! Do you have good low carb recipes? I also usually eat pretty low carb. Mostly because carbs make me tired more easily and I don’t want to add to that. If you have any good recipes you enjoy, could you send a link? 🙂

[Robin Taylor]

Just a couple of things that has helped me immensely in the past couple of months…1) I too, was extremely low on Vitamin D so my NP had me start taking 3000 I.U. Of Vitamin D a day. And 2) My GERD symptoms were really affecting sleep quality, my acid production at night was crazy! Again my NP saved the day and said to try OTC Zantac. This drug is amazing! I can finally sleep again! I try to follow a low carb diet and I eat about half of what I use to eat pre-diagnosis. I feel full most of time because of the meds. I eat only two real meals a day, with the last no later than six if I can help it, with very little snacking in between. I am losing weight, but I need to. Oh and a last little thing…I have pretty much cut out any pop/soda. If I have any it has to be early…or you guessed it…no sleep because of the acid it produces.❤️

[Brittany Foster]

Hi Robin,
Like you , I am also on zantac. I take prescription strength twice a day and it has really helped me a lot with my GERD symptoms. It is so frustrating having the feeling of reflux when laying down and trying to get comfortable. The fact that you try to avoid eating later at night is great and I’m sure makes a huge difference in the amount of discomfort you experience. Thanks for this tip! You’re doing GREAT! 🙂

[jen-cueva]

This is an older post, but I found it interesting and may benefit some of you. As several have mentioned, diet is such a personalized approach. We can offer our experiences so others can try what may work best for them.

Like @tessamay, I don’t think I am eating enough most days. Recently my nephrologist called me after hours about my kidney labs. I assumed it was a sodium drop. However, it was dangerously low blood sugar. One day it was 56, and another day in the high 30s. I’m interested to see what it is when I go back for more labs next week. Has anyone had this issue since your PH diagnosis?