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    • #32964
      natalie scott
      Participant

      Hey everybody,

      I’m Natalie and I have been visiting this forum since November 2021, I decided to go ahead and make an account so I can connect with everyone! First things first, I live on the gulf coast and love to fish and garden! I’ve always been really active till the last 2 years due to injuries I sustained while in the army (2010-2016) back and ankle problems. I turned 30 last January and it seems like since then my health has declined. July 2021 I ended up having my 4th ankle surgery, and while under anesthesia my blood pressure dropped and it became difficult for them to keep me stable, that being said this was the first time this has ever happened to me and I have had a plethora of surgical procedures done. My surgeon recommended that I speak with my provider about it to rule out anything serious that may be going on, honestly I really didn’t think much to it, but I did do what she asked.

      My provider ordered a heart monitor test and some blood work, as well as an echocardiogram, and referred me to a cardiologist. Come to find out all my routine visits prior to my surgery showed that my blood pressure had been lower than normal, the heart monitor revealed that the right side of my heart is stressed, but the cardiologist suspected that was from undiagnosed sleep apnea, because I complained about how tired I am all the time. At that time I hadn’t had the echocardiogram yet so she ordered a sleep study and would get back with me after my echo results. Fast forward to November I have mild tricuspid regurgitation and a PA pressure of 35mmHg. Of course I didn’t fully understand this, and even with the symptoms I have been experiencing all last year, I just shrugged it off to being out of shape.

      I had the sleep study done early December, and a Pulmonologist contacted me with my results and explained that I do have very mild sleep apnea and my oxygen only dropped a little, and he said he doesn’t believe that, that would be enough to be whats causing the high pressure. Though the cardiologist does believe it can still be a factor along with my weight.

      I am 5’2 and in the last 2 years my weight has fluctuated tremendously from 220 to 290, I am currently at 250 and I have lost 40lbs since my surgery in July, and still losing weight. My symptoms include pressure in my chest and back, zero appetite, I’ve been experiencing a persistent cough, and shortness of breath especially when I go up and down my stairs. I am not a smoker, and have never smoked. I did live in a smokers home growing up and was exposed to burn pits while in Iraq, and as far as I know there is no genetic history of this in my family.

      Sorry for all the info I’m just curious from other peoples experiences and should I be more concerned with how they are treating this? I am being treated at the VA, so far it’s been okay. I am having a nuclear stress test this week and a CT scan of my lungs. Any input is much appreciated and I look forward to getting know everyone!

    • #33059
      Carol Volckmann
      Participant

      Hi Natalie, I just read your post. So sorry you are having such difficulty finding answers. Has your doctor suggested getting a Right Heart Catherization? I think your team (Cardiologist and Pulmonolgist) would want to rule out Pulmonary Hypertension or Pulmonary Arterial Hypertension. It is hard to believe in this day and age and in this country many doctors including Pulmonolgists know very little about PH. A RHC would be definitive one way or another. I hope you are able to find some answers and a team that will work with you. My thoughts and wishes are with you. Hope you have a restful weekend be well be safe 😊

      • #33062
        natalie scott
        Participant

        Thank you Carol, My cardiologist said she wanted to try less invasive tests first, but when I see her in a couple weeks I am going to suggest the RHC so we can get to the bottom of this. I’m really curious if there is anyone experiencing this and it being linked to weight.

        • #33063
          Carol Volckmann
          Participant

          Hey Natalie, I think your Cardiologist is on tract – go for the less invasive test first. Over weight can stress your heart, sleep apnea, stress on the joints etc. Loosing 40lbs should make you feel a bit better. Are loosing weight because you are trying to or loosing weight without trying? Does your Cardiologist want you to be on a weight-loss program? Keep the forum posted. Sending you hugs 🤗 and hoping for good outcomes.

        • #33076
          natalie scott
          Participant

          Carol,  I started losing the weight right after my ankle surgery, literally just dropped 10lbs in a week, then started losing more. I even told my provider, and made sure she knew that I hadn’t done anything to lose it. Other than I just haven’t had an appetite. No to the weight-loss program just to keep losing weight. I’m definitely not complaining about losing weight effortlessly, but I know my body really well and that has NEVER happened.

          • This reply was modified 6 months, 3 weeks ago by natalie scott.
    • #33068
      Jen Cueva
      Keymaster

      Hi @nataliescott, thanks for sharing a bit more information about your journey thus far. You mentioned you have mild sleep apnea. Left untreated, this can cause more issues down the road. So, did they order you a BIPAP or CPAP machine after the sleep study?

      I think that an RHC will be something they will want to do further down the line. But I would suggest having that done by a PH doctor, which we discussed in another post. Did you already have the nuclear stress test and CT scan? Any results?

      When I was trying to get my diagnosis, I was told that I was overweight. But my almost 70 pounds mainly was fluid from having congestive heart failure that was undiagnosed. Are they giving you anything to relieve the pressures on the right side of your heart?

      You’ve certainly had some medical struggles with all of your surgeries; I’m sorry. Can you continue to enjoy some fishing and light gardening?

      One step at a time, Natalie. It sounds like you are symptomatic. If you start feeling worse, I would suggest heading to a hospital near you with a PH doctor, such as the one in Mobile or NO. I bet there are others, but I believe Mobile is the closest, as we previously discussed.

      BTW, did you get any of that now over the weekend? My Dad did, that was crazy!

      • #33075
        natalie scott
        Participant

        Hey Jen, they did not order me anything for it, once again they just told me to lose weight for it. I know I was a little taken back by that because my husband has sleep apnea and uses a CPAP, and yes do know if left untreated it can cause more health problems.

        Though no one has called me yet with my results, I was able to see them in our patient portal. My Nuclear stress test was all normal, so thats great! But my CT Scan did show Emphysematous Changes which I was very surprised by since I am not and have not ever smoked. I believe that is from burn pit exposure while in Iraq, which was 12 years ago. whats crazy after that happened to me I complained about the shortness of breath but they shrugged it off. Though 2 years ago my provider had me do a lung function test, which the lady who performed it said I did have just a little damage, but they said it was probably from the Gerd I had been experiencing since the pregnancy with my daughter. It does seem like after I had my daughter is when things started changing especially weight gain, chest pressure, fatigue, headaches, tingly in my feet. My provider blamed it on hormones which honestly I though it was that as well.

        That is wild how water weight can be a indicator of congestive heart failure, so scary! Do you still get fluid retention like that? Nope haven’t been prescribed anything, they told me they need to figure exactly what is causing it to treat it. I hope I hear from them this week, because I don’t have a in person appointment till February 3rd.

        I haven’t been out fishing as much as I used to, literally use to go everyday! Just tired and the weather hasn’t been ideal. Since my ankle surgery I have even looked at my flowerbeds just because I know it will make me feel guilty LOL! My husband does help me out a lot though, he is incredibly supportive.

        I did happen to find a relatively new PH clinic here, it’s in Ocean Springs, so I guess we will see what they do next, hoping for the referral. No I did not get to see any snow, but man has it been COLD!

    • #33072
      Colleen Steele
      Keymaster

      @nataliescott I don’t have much to add to what other members have already shared and suggested. I also previously gave you those links to look over and hopefully they will help in some way. Just want to thank you for taking the time to introduce yourself to everyone and I encourage you to keep asking questions here and share updates.

    • #33082
      Jen Cueva
      Keymaster

      Hi @nataliescott, thanks for sharing so much of your story. There seems to be a lot of information in the past that may have been missed, too. AS you mentioned, some were probably related to your service.

      It sounds like you have enough information and questions ready, so follow upon with your medical team. Those patient portals are great for seeing information but not so good when it feels like we are kept waiting to discuss any concerns. Do you find this true?

      That’s great that a new PH center opened up on the coast. LMK if you have the info in case we have others in that area and need resources.

      I have a PHriend who is in the Mobile area. She goes to New Orleans. But it’s because she has had PH for about 17-18 years, like me. There were no other doctors in the area at that time. Now, she loves her team and won’t change.

      The fluid retention with CHF is not uncommon with CHF. Not all retain that much, and since I was diagnosed and on multiple diuretics twice per day, I am not having anywhere near that.

      Yep, yesterday my Dad told me that this weekend is supposed to be in the 30s there. He does not like that cold, either.

      Please do keep advocating and educating yourself. If you have questions, definitely reach out and ask us all here. We are here to support you.

    • #33330
      natalie scott
      Participant

       

      Today I followed up with the cardiologist about my Nuclear Stress Test and CT Scan of the chest. She said that because the diameter of my pulmonary artery was normal that she completely through out the likely hood of having PH, despite all my previous tests and symptoms that indicated otherwise. She told me I need to get with my provider to see a pulmonologist about the Emphysematous changes from my CT scan . In fact she wasn’t even going to bring that up till I mentioned it. From what I have read Emphysema/ COPD can cause pulmonary hypertension. At this point I am very discouraged and frustrated. This is all done through the VA so it looks like I am going to be seeking out a new provider through my Tricare insurance and go from there.

      </div>
      **My provider ordered a PFT and some more labs** pending those results I should see a pulmonologist afterwards.

      • #33332
        Colleen Steele
        Keymaster

        @nataliescott you previously mentioned that a right heart cath would probably be done at some point. Has that happened yet? If not, I would recommend pushing for it – as long as it would be safe for you to have one. That will tell you for certain whether you have PH or not. Keep advocating. I wouldn’t let them drop the ball on PH just yet, especially if the one test that will provide the best answers hasn’t been done yet. What are the chances of you being seen by a PH specialist and not just a pulmonologist and cardiologist? I’m sorry you are going through this.

    • #33344
      Jen Cueva
      Keymaster

      HI @nataliescott, I’m sorry you don’t have any more answers after your test results. Did you happen to reach out to a PH specialist near you on the Gulf Coast?

      I would suggest that if you want to rule out PH. They would perform a right heart cath(RHC), the “golden standard” for PH diagnosis.

      As @colleensteele, continue to advocate and don’t stop until you get some much-needed answers. I’m sorry that the VA doctors aren’t offering much help. Please continue to keep us posted.

      Stay warm in that colder air and enjoy your weekend.

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