January 10, 2022 at 12:20 pm #32958
We all know that old saying, you are what you eat. But is this more so when having a rare disease, like PH?
Do you feel the foods that you eat affect your PH? Have you found any trigger food groups that worsen your symptoms?
Most of us know that sodium affects our fluid, increasing PH symptoms. But what other things have you found that worsen your PH?
Do you tend to limit gluten, dairy, or inflammatory foods, etc.? Have you found any specific food that you don’t eat at all?
Let’s talk about this.
January 10, 2022 at 5:14 pm #32968
@jenc sodium was definitely one Cullen had to use in moderation. I think portion size was more of an issue for Cullen than what he was eating. If he ate a full meal, especially during his decline, he would feel very sick and it would enhance his fatigue. He did better grazing throughout the day. Is this the case for anyone else?
January 11, 2022 at 2:14 pm #32977
Hi @colleensteele, yes, I’ve had that experience, too. Like Cullen, I tend to graze like a toddler throughout the day. I can’t eat a large meal, well, unless chips and salsa count as a meal, hehe.
When this began early in my PH journey, I recalled my late Pawpoaw doing the same. He had emphysema and would eat very little at a time. I’m like that now.
I also find that many gassy foods or cause my stomach to bloat affect my PH. When my belly is bloated, it doesn’t allow my lungs enough room to expand. This causes more shortness of breath for me. Beans, wheat, carbonated beverages are a few examples. DId Cullen experience this? Does anyone else find this with foods that bloat your belly?
January 11, 2022 at 2:54 pm #32982
Hi @jenc, it’s not so much what I do eat but rather what I don’t eat enough of, and that’s protein. I also have a very bad tendency to skip meals and I’m sure this contributes to my exhaustion. I don’t believe in New Years resolutions so I’m just going to say I’m trying to change this.
January 12, 2022 at 1:13 pm #32998
Hi @traceyaustralianmigration-co-za, I don’t make NY resolutions either. Instead, I will try to be the best version of myself I can be.
Protein is a challenge for me, too. My daughter, my dietician, would find me tasteful protein powders to add to smoothies, etc. But it’s also that I get SOB when chewing at times. So meats are not as easy to chew. Honestly, I haven’t been making those and think I need to start back to get a bit more protein. I did buy a smoothie with added protein from a smoothie place thru a drive-thru last week. I will add a topic if I can’t locate an older one that discusses protein and diet. I will tag you to find it once you are back in the forums.
I bet we will see you here more in the next few days as you rest after a big holiday. I’m so happy that you finally enjoyed yourself and your kids.
March 10, 2022 at 12:03 pm #33625
March 10, 2022 at 12:03 pm #33626
March 10, 2022 at 2:25 pm #33629
My son learned that it was important when one has allergies to learn about cross allergens. For instance, did you know if you have a nut or peanut allergy, that soy is also a cross allergen? My son didn’t until his doctor prescribed a medication that has soy as a binder. It sent my son to ICU, and he almost died. So, for heaven sake, if you have allergies, find out about cross allergens that often affect people with your specific allergy.
Okay, this isn’t really about a food worsening his PH symptoms, but it kinda fits in.
March 11, 2022 at 1:30 pm #33643
Wow, @mamabear007, that must have been frightening! It is important to think about food allergies and how they may interact with medications. That and your mention to be mindful of cross allergies is an excellent tip.
No, I didn’t know that soy is a cross allergen to peanuts, but it makes sense. Thanks for sharing.
March 10, 2022 at 3:27 pm #33634
<p style=”text-align: left;”>Hi @ jenc, I think about you and @colleensteele every night when I get in bed exhausted. And feel so bad that once again that day I didn’t find time to reach out to you.</p>
Funnily I saw your post as my very first post when I went onto Facebook the afternoon. I thought, I do trust myself, and I’m trying so hard to make things happen, but I get so little cooperation or help.
I have so much going on on my life it’s just ridiculous. I think I told uou before that my business partner told me in early Jan (when I wasn’t actually officially back from sick leave) that he wanted out of the business. I said that’s fine and this is what the business is worth so this is what I’ll pay you. He didn’t like my offer, and in his usual totally ignorant way copied me on emails he sent his attorney basically calling me a princess. I countered with an offer that is really going to put me under financial strain and it’s way above market value, but I want him out, and said it’s my final offer and if he’s not going to accept that then I suggest he find a third party buyer who will pay what he wants. So after him pushing to get things done by mid Feb, he’s gone totally quiet on me. I am trying to pick up the pieces of the business because now that I’m back at work it’s so evident that he has done nothing for the last 2 years. Despite the fact that he has accused me of wanting my cake and eat it, and hounding our accountant since the first time I was hospitalized on how to force me to resign – she told him to get lost. I was good enough for the 18 years prior that I carried him, but as soon as I wasn’t able to work he wasn’t interested. It reminds me that once when I was in hospital he arrived with a armful of client files for me to work on, the nurses chased him out, I laughed. He’s lazy and has always been a dead weight. I would just like this finalized so that I know how to build things again. It’s difficult trying to launch a marketing campaign when you don’t actually know what the company structure is going to be going forward. I just feel quite betrayed that after working together for 20 years he’s chooses the path of making it my fault that no money has been made since I got ill Anyway he’ll be going soon and I can hopefully pull things back.
I did my round of doctors last month. The cardiologist was happy. Then I went to the rheumatologist who said oh you’re still in heart failure, I thought why does the cardiologist not tell me this. Then the next day I went to the pulmonologist and we were supposed to come home straight after. But she was really unhappy with my LFT and tbe gave that I’m still so sort of breath, and I had to have a CT scan and a VQ scan. During the CT scan the radiographer pulled me out the machine and asked if I was having trouble breathing, I said yea but it’s because I’m lying flat. Then she asked if I’ve got covid and I panicked. Anyway long story short it seems that my diaphragm must have been damaged in the surgery because the left side does not work at all, and I’ve still got infiltrates from the pneumonia I had in November. I got an email from the pulmonologist that I didn’t understand, but what I did get get is that my heart “slightly reduced in size”. So again why didn’t the cardiologist tell me heart is still rather large. And now they’re also concerned about my kidney function but that has been bad for a few years but seems to be on the decline. I still have no answer as to why I still have the extreme dizziness. I really just don’t know what’s going on, the pulmonogist needed to talk to the cardiologist and the surgeon who seem to both be saying not my problem. Anyway I had more bloods today and have to go to do a sniff xray in Johannesburg. The closest radiologist to us has never heard of a sniff test so I think I’m safer traveling to joburg. The pulmonogist tried to convince me to move back to joburg, and I said no sorry I live in paradise. She said can’t you find paradise in a suburb of joburg please 🤣.
So if you haven’t picked up yet, I’m stressed and feeling very unsettled again. I’m feeling a bit like I’ve swopped one problem for another. But on the bright side I can think again, I have my mind back, and that is so,so important to me. I can actually engage in a meaningful discussion now. I missed my mind.
And you’re probably sitting reading my ramblings and thinking really, you seriously think you’ve found your mind again 🤣🤣
I’m going to leave it on that note. Hugs from beautiful Dullstroom.
March 10, 2022 at 3:44 pm #33635
@traceyaustralianmigration-co-za I was actually thinking as I was reading your update that you are sounding sharp and clear headed in spite of all that you are going through.
I don’t know what to say about your work partner other than, adios and don’t let the door hit you in the rear end on your way out! I’m feeling hopeful for you that once he totally out of sight and out of mind you will make good on the business.
I’m feeling a bit frustrated with your cardiologist so I can only imagine how you must feel about him. I’m guessing no, but is there any way of finding a new cardiologist. If not then I think you at least need a sit down or video chat with him and ask him straight out – why aren’t you telling me these things? Why do other doctors seem concerned and you don’t? He should be held accountable for his silence.
It could be other reasons but I know from Cullen’s experience that heart failure and and enlarged heart can cause dizziness.
My friend I am so sorry you are still struggling as much as you are and I keep praying that things improve for you. Except for the partner issue, are you enjoying being back at work?
March 11, 2022 at 1:36 pm #33645
Ughh, so sorry to hear of the bad news, @traceyaustralianmigration-co-za. But more important, how the cardiologist dropped the ball and dismissed these findings! I agree with Colleen; maybe have a video call to ask him these questions. Leaving heart failure, enlarged hearts, and other issues alone can worsen quickly. This is NOT acceptable.
Those finds may offer the reason for your dizziness and continued shortness of breath. This infuriates me.
I’m sorry to hear about the ongoing troubles of your business partner. It sounds like good riddance, and hopefully, things will run smoother for you at work. How has it been for you? I can imagine that you have work backed up from your report.
Your memory coming back is a huge relief; I know that feeling too well. I’m not entirely to pre-COVID yet, but so much improvement. I’m grateful for us both, my PHriend.
I’m sending you extra gentle hugs, love, and prayers your way. Take care.
March 14, 2022 at 11:51 am #33660
@jenc @colleensteele, yea the issue with the cardiologist is very irritating. And he’s the expert cardiologist treating PH patients in South Africa. He was the founding member of the South African PH Association and is a professor at the medical school, so one would expect a bit more at this stage. I think it’s a thing with South African doctors, they’re pretty vague and don’t really exain things very well. The problem is, like with everything else in this country, there is zero accountability and they all cover each other’s backs. I’m trying to take legal action against the idiot cardiologist who totally missed the valve problem and PH for a good 5 years, but I have been told by various attorneys that PH is a subjective diagnosis (?) and for them to take on the case I need another cardiologist to call the idiot out in writing. Just goes to show they don’t understand PH and I’ve asked two cardiologist ad the surgeon to back me up, but they won’t. My sister keeps telling me not to rock the boat, but I strongly feel that I must for all the other people who are not being diagnosed.
My pulmonologist at least is straight down the line and if I ask a question I generally get an answer. She’s my go to person at the moment, I know she’ll tell it like it is.
It’s been challenging being back at work, and exhausting, but I am so loving it. @jenc I don’t know how but it’s like I went to sleep one night and woke up the next day with a mind. I wonder if it’s from the Occupational Therapy I had in rehab, all the card games and puzzles that I found so pointless make a bit more sense now. And believe it or not, the adult colouring in books which are super intricate and got me concentrating again. When I got home it was taking about 3 weeks to do one drawing but now I can do one in a weekend.
And to leave things on a positive note, I walked around my garden today for the first time in 2 years. I don’t know who was more excited – me or Enzo 🐕🦺
March 14, 2022 at 5:50 pm #33666
@traceyaustralianmigration-co-za at least you can trust your pulmonologist. A pulmonologist who pays close attention to the lungs and heart is important to have when dealing with PH. Having a cardiologist is important too but a pulmonologist is often more aware of how PH effects the heart and what to watch out for. I only hope the two doctors are able to communicate with each other.
I LOVE coloring. I remember as a little girl I would tell my parents that no matter how old I got I would always color. Funny how they have adult coloring books now so I really can keep that promise. I’m so glad you found joy in it and that’s it’s helping with your focus.
Yay to walking the garden! Do what you can when you can and enjoy those moments!
March 14, 2022 at 11:59 am #33662
Hi @traceyaustralianmigration-co-za, well, at least you have your pulmonary doctor who you can trust and explain things more. Hang on to her!
Isn’t it funny how working can be therapeutic for us although exhausting? I’m so happy that you are enjoying being back to work.
That’s fantastic news about your walk in the garden. Hopefully, you and Enzo will make this a date more often. How did you feel afterward?
The puzzles and books you mention probably did positively affect your neurological symptoms. Often we hear how puzzles, books, music, and other types of therapy boosts memory. I’m extremely happy for you, my PHriend.
March 14, 2022 at 12:08 pm #33663
March 15, 2022 at 2:40 pm #33671
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