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    • #23388
      Mae
      Participant

      Hey Everyone,

      I’m new to this discussion group and wanted post a discussionsto get to know everyone. I HOPE to learn more from you guys and and get some POSITIVE feedback as well. Here is my blog, to show my jorney, positive outlooks and tips that have helped me so far throug this difficult disease. Feel free to share yours as well.

      Discovery of Pulmonary Hypertension

    • #23396
      Jen Cueva
      Moderator

      Hi @owensgirl1,
      Welcome to the PH forums. I have had PH for 15 years. It sounds like you are doing well so far. You did not mention any medications, are you on any PH meds yet?

      My daughter is a registered dietician, so eating good and making healthier choices is key for me. I also like to try to stay positive. That being said, PH is tough and some days are difficult. This is a great place to be no matter what kind of day that you are having. I hope that you will find support here.

      We also have several here that with CHD and PH.

    • #23403
      Mae
      Participant

      Hey Jen,

      No, I’m not currently taking any meds. My cardiologist told me that the meds have alot of side effects and since Im in beginning stages hes just going to keep monitoring me. Sounds like you have alot of experience with this disease since you have been dealing with this for 15 years. Is there any specific way of eating or any supplements that you add to help you feel better. I notice I have good and bad days. Where some days I feel normal and theres days i literally have no energy at all and my symptoms feel worse on some days too. But I still push through the day since I have 2 lil ones that need me throughout the day and I work nights. So I really dont get too much rest.

      Sorry for all the questions, but you are the first person I have talked to thats going through the same condition and I would love any additional advice I can have.

    • #23414
      Brittany Foster
      Keymaster

      Hi @owensgirl1 welcome to the forums ! These forums are honestly going to be a huge help for you and your beginning of finding out more about PH and what there is to do to help you. My doctors are not giving me any PH specific medications yet either because what I have is considered mild compared to some. One of the things that they are going to be doing soon though is an exercise heart cath which will give a better understanding of my pressures when I am exerting myself and becoming more symptomatic. Have you had caths and procedures done like this?

    • #23420
      Mae
      Participant

      Hey Brittany,

      Yes, I recently had a heart cath done. My pressure on echo was showing 41, but my heart cath showed my pressures at 29. My cardiologist said he could do the procedure that you are going to be doing soon, but said that it wouldn’t change my diagnosis, it would just show how my pressures are with exertion. It seems we are in similar stages though. Is there anything you do that you notice helps with your symptoms?

    • #23421
      Brittany Foster
      Keymaster

      @owensgirl1 for me, my mild PH and raise in pressures is coming from a drop of oxygen with activity that is noticed on all tests that I have with activity. The oxygen that I use during active time is helpful. I am also on medications for my heart to help it pump with better efficiency and effectiveness. Are you on any type of heart medications at all? Anything for your blood pressure, heart rate and function etc?

    • #23422
      Mae
      Participant

      Hey Brittany. No, Im not takinging any medications forvmy heart or lungs. I have wondered if that would help my symptoms. I was told that theres alot of side effects with medication. So he doesn’t want to start me on that yet.he did say for me to do brisk walks, rest as often as I can and not to use canola oil. So I have just been taking healthier aproaches with my eating and doing intermittent fasting.

    • #23428
      Colleen Steele
      Keymaster

      Hi @owensgirl1! So glad you joined us! My son was diagnosed with PAH when he was 8. He went misdiagnosed for 2 years so by the time we knew what he had his heart and lungs were in bad shape. He did do well on triple PH therapy for 5 years but in 2014 he received a heart and double lung transplant. He is now 5 years post and doing well.

      Side effects are a big down side to treatments but personally I think worth dealing with if the medications help keep you stable and slow down the progression of the disease. If you feel like you are becoming more symptomatic I would recommend revisiting a discussion about treatments with your doctor. Maybe start you off slowly on something, like a beta blocker or diuretic, oxygen at night…and see if you feel a difference in your day to day quality.

    • #23432
      Mae
      Participant

      Hey Colleen,

      Im so happy to hear your son is doing well through all that. I couldnt imagine going through that with my lil ones. You are super strong mom. It sounds like it was a rough time you guys had in the beggining getting diagnosed and figuiring out treatments. I really appreciate all your advise and will definitely ask on my next appointment since Im having more bad days. I just worry about taking meds and being on for life is all. But, im definitely happy to be apart of this journey with you guys, its nice to have a community of people that share the same issues and are understanding.

    • #23439
      Brittany Foster
      Keymaster

      @owensgirl1 I am glad that they are taking a good approach to your treatment and that they want to hold off on medications until they are absolutely needed for you. Do they know what the underlying causes of your PH are? Sorry if you have answered this question already, just trying to catch up on everything!

    • #23452
      Mae
      Participant

      Hey Brittany,

      My twin sister and I both had to have PDA surgery where they placed a staple in our hearts when we were both babies due to being premature and he said that was the reason Im having issues now that I’m older. Its weird though, we both had the same procedure but both have different issues now that we are older.

      My sister has a heart murmur still and Mitral Valve Prolapse and I have PH.

      So I guess we have both been effected differently as we got older. Judt find that interesting is all.

    • #23460
      Rebecca Talkie
      Participant

      Hello @owensgirl1,
      My name is Becky and I too had PDA. If you don’t mine me asking, what year were you born? You seem to be a lot younger than I am. I too had PDA but it was 1955. They waited until I was 4 years old in 1959 before they did my surgery. They had to wait for a heart/lung machine to be built by its inventor, Dr. Michael DeBakey, and delivered to my hospital before they could do it. As I grew up, they kept telling me that I was “fixed” and should have no more problems. I went to nursing school and became a cardiac nurse. Talking with the cardiologists I discovered that I probably should have been followed by a cardiologist all along. So I started going to get Echo’s every couple of years. I had married, had kids and then became overweight, which did not help me. I had several valve problems but after I had weight loss surgery they almost all went away. About 6 years later, I started to get tired, dizzy and short of breath. It took about 8 months of testing but I was finally diagnosed with Vasoreactive Pulmonary Arterial Hypertension. My pressure was 30, but probably because of my age, they started me on Cartizem. I am now also wearing a 30 day heart monitor trying to track down some elusive PAC’s which may be the reason I have passed out twice. Sadly, I am reacting quite differently to my diagnosis. I still eat healthy enough meals, but have started on some very bad snacking habits. Eating has always been my go to way of dealing with stress. Exercise seems to worsen things for me. Too old. I am glad you reached out. I will follow your podcast – even though I am not real sure what it is. 😉

    • #23462
      Mae
      Participant

      Hey Rebecca,

      Thank you for sharing your storey with me. It sounds like a similar situation we both had with pda surgery and having issue as we get older. I was born in 87 and had pda surgery a few weeks after I was born since the meds were not working and was getting worse. Then i had to wear the heart monitors until I was 1 years old. But after that I was able to live a normal life and never had any further issues until a few years ago. I have good and bad days. But Im trying my best to stay positive and find solutions that help me feel better. It sounds like you have been doing good with your weight loss, just need help getting back on track with adding in some healthy snacks. I think we all have that issue though. I started doing intermittent fasting as a lifestyle change and that has really helped me keep my calories in check and plan better eating habbits. I wish you the best and ty for following my blog.

    • #23470
      Brittany Foster
      Keymaster

      @owensgirl1 this is definitely interesting for sure! I think that it’s important for those with heart disease when they are younger to be followed by an adult congenital heart doctor and not just a general cardiologist. Are you being followed by an ACHD doctor or a general cardiology doctor? If you aren’t in ACHD care I would suggest the ACHA website for information about doctors that may be accredited in your area! They are so knowledgeable and do their research on impact of congenital heart disease on the adult patient and as we grow.

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