• Posted by brenda-denzler on October 16, 2022 at 6:53 pm

    I have received the final report on the tests I had in Boston. The first one was your basic right heart catheterization. The report says:

    Pulmonary artery: Pulmonary artery systolic pressure was elevated. Pulmonary artery diastolic pressure was elevated. There was mild pulmonary hypertension.

    Summary: Borderline elevation of the mPA with normal cardiac output and PVR. These findings do not explain the patient’s respiratory limitation.

    Everything else was normal on this test.

    The second test was the cardiopulmonary exercise test WITH the heart catheter in place. They took 22 vials of blood on that one. There were some clear results that were out of standard range, but only VPO2 and SO2-Venous were notably out of range. A couple of other values were mildly out of range. The final report for this test says,

    There is no underlying pulmonary hypertension or heart failure. There is evidence of impaired systemic O2 extraction. This is driven by hyperventilation and shift of the oxyhemoglobin dissociation curve. Obesity contributes.

    No heart or lung problems. Impaired systemic oxygen extraction is because of “hyperventilation.” When I look online to see what can cause hyperventilation, I see that while there are some physiological conditions that can cause it, by far and away the most frequent cause is stress and anxiety.

    In other words, I’m hyperventilating whenever I try to do the laundry, put away the clean dishes, get my mail, carry in groceries from the car…. My exertion intolerance is because I’m anxious and stressed. Ergo, if my mental health were better, I wouldn’t feel bad. It’s all in my head.

    Thus saith the Medical Deities. Amen.

    jen-cueva replied 1 year, 8 months ago 5 Members · 50 Replies
  • 50 Replies
  • Colleen

    Member
    October 17, 2022 at 4:02 pm

    @brendad53 I’m sorry. My heart goes out to you. I know it feels like you are being told it’s all in your mind but the right heart cath did say, “Mild PH” and that is the most effective test for diagnosing the disease. I understand your symptoms don’t feel “mild” but I think it’s important to note that PH was found.

    My son was critical when diagnosed so I’m not sure how mild is treated or if it is. Can any members share their experience with mild PH and recommend questions Brenda should ask her doctor?

  • jen-cueva

    Member
    October 17, 2022 at 6:34 pm

    Hi @brendad53, I’m sorry you’re feeling so frustrated with the reports from Boston. But I agree with @colleensteele; the reports say “mild PH” is a diagnosis. Now, treating mild PH depends on the case. But many people I know with mild PH are treated and get some relief with treatments.

    Also, even mild PH can cause symptoms. Each of us is so different in how our bodies react. Some with sky-high pressures do well without too many symptoms. Then some with a milder PH have many more symptoms.

    It’s NOT in your head, and hopefully, your doctor can help you understand this more when you see him. We are still here with you holding your hand. Don’t give up now- big hugs to you!

  • brenda-denzler

    Member
    October 17, 2022 at 7:43 pm

    Thank you guys, Colleen and Jen. I don’t know if the exercise test finding (no lung problems) will override the catheterization finding (mild PAH). Since the exercise test came second, I’m assuming it will override.

    And even if PAH is kept as a diagnosis, that is only part of the desired information. The other part is the “why” of it all. And they seem to be saying that the “why” is all in my head.

    They’re not saying that the symptoms aren’t real. They agree that they’re real.

    What they *are* saying is that the symptoms are caused by hyperventilation. And the major cause of hyperventilation is anxiety. THAT is a “in your head” thing. In other words, if my mental health were better, I wouldn’t have these very real symptoms.

    In other words, I’m doing it to myself because I’m not mentally healthy. And if I want it to stop, I need to get my head on straight. That’s how I read it.

    I don’t think this is true, but I’m beginning to doubt myself. Self-loathing is never far below the surface, and this “hyperventilation” with all that it implies certainly taps into that.

    • Colleen

      Member
      October 18, 2022 at 6:23 pm

      @brendad53 are you going by what the written report reads or has someone actually said these things to you? Reports can sound like they are saying one thing but when you go in to speak to a doctor they sometimes have a broader interpretation.

      @jenc makes a good point about how everyone reacts so differently to PH whether it be mild or severe. My son’s PH was severe yet he only experienced 2 fainting spells over 5 years. It wasn’t until he was in severe heart failure and waiting for a transplant that the fainting became a real problem. Yet we have known patients with mild PH who experienced fainting more frequently. This is just one example.

      I know it’s hard but try to go into the appointment with some hope and give the doctor a chance. If anything I think your main question should be, how are we going to treat the mild PH to help slow inevitable decline?

      Sometimes we never find out the reason for the PH. My son’s PH is idiopathic. We did genetic testing and everything…there were no answers. And he did have 2 heart conditions but they were not the cause for the PH.

      Prayers continue!

      • brenda-denzler

        Member
        October 18, 2022 at 6:56 pm

        I quoted the written report. It doesn’t say “all in your head.” Medical reports aren’t that blunt. They obfuscate. Kinda like doctors talking about “survival” from cancer. What they don’t make clear is that the “survival” they are talking about is simple living and breathing. You may be riddled with cancer and bed bound, or free of cancer and hiking up Mt. Everest. Both are talked about, simply, as “survival.”

        Granted, my first reading of the term “hyperventilation” was negative. They’re saying my very real symptoms are not generated by some kind of faulty physiological issue. They’re generated by my poor mental health. That’s what they’re saying.

        But then I thought, well, that’s not necessarily so. The term “hyperventilation” may have medical references to things that I’m not aware of. So I began looking on line for medical info on hyperventilation. Medical journal articles. Medical sites. Virtually always, it’s linked to stress and anxiety. Mental health.

        So……

        I plan to go into the doctor’s office with a stoic approach (if possible) and listen but not react.

        I don’t know if I’ll ask him about managing the PH, because the written report from the exercise test says it doesn’t exist.

  • brenda-denzler

    Member
    October 17, 2022 at 10:04 pm

    Never mind me. I’m busy being angry and depressed right now.

    • jen-cueva

      Member
      October 18, 2022 at 2:04 pm

      Hi @brendad53, I had that “it’s all in your head” scenario with the first doctor I saw when I started with PH symptoms. Then I went home and passed out and almost fell into the fireplace. Manny was there to catch me. I know how dang frustrating and angry that will make someone.

      Nothing I say will help you until you get more validation and answers of why? So, I’m wrapping you with love, light, and hugs, my friend.

      Isn’t your appointment this week or next?

      • brenda-denzler

        Member
        October 18, 2022 at 5:49 pm

        Appointment with Dr. Ford, here locally, is the 26th. I dread it. I’m bracing myself to go in and be subtly insulted. And take it stoically. Then leave and never see him again.

      • jen-cueva

        Member
        October 19, 2022 at 3:21 pm

        Hi @brendad53, I’m sorry you’re feeling so much dread about your appointment with Dr.Ford locally. I thought you liked him, and he looked into things for you. This alone says he believes you. He can put it all together, review it, and see what he can figure out. Unfortunately, if we know the diagnosis, the why may never be answered. It’s not uncommon—one step at a time, my friend.

      • brenda-denzler

        Member
        October 19, 2022 at 3:31 pm

        I have liked Dr. Ford, Jen. You’re right. But given the verdict provided by Boston, I anticipate that he will say the same thing.

        When I was into this whole decline by several years, and my oncologist had denied all knowledge, I knew I was on my own to try to figure out what was going on and what could be done about it. The logical first step was my heart. Was it my heart? One cardiologist said, “Eh, not really, but maybe a little bit” and gave me the lowest possible dose of metoprolol.

        Ultimately I got a second opinion from a cardiologist who was not in my health care system. Nevertheless, she accessed my medical record, then came into the exam room and, without laying a finger on me to examine me, said I was “just anxious” because I had so recently faced death via cancer. And she was all syrupy about how anyone would be anxious and afraid, having faced such a thing.

        I never went back to her. But her treatment of me has made me very, very sensitive to doctors whose expertise is NOT psychiatry who nevertheless pretend to having some expertise in it when they brush off my symptoms as being generated by “my anxiety.”

        The folks in Boston have just told me, as far as I can tell, that they think I’m “just anxious” when I’m doing my laundry or getting my mail. Since Ford is the one who suggested I go there, I must assume that he will agree with whatever they say. So I am anticipating that I will be forced to sit calmly through a visit with him while he insults me yet again with a bogus “diagnosis.”

        If he doesn’t, then he may have won me over for life.

      • jen-cueva

        Member
        October 21, 2022 at 1:57 pm

        Hi @brendad53, I understand why you’re having these feelings after such treatment, not once but multiple times. I hope and pray that Dr. Ford will continue to be liked/loved by you and win you over.

        I know next week’s appointment is weighing heavily on you. Big hugs, and know we are here for you and holding your hand. It is scary when you can’t breathe!

        Thanks, @debbie, for sharing your experience and your thoughtfulness to Brenda to support her as she gets through this next appointment. How are you doing?

        Brenda, why don’t you try and do something you enjoy this weekend? You need a break.

      • brenda-denzler

        Member
        October 21, 2022 at 2:28 pm

        All the ice cream I can eat. 🙂 That’s what I’ll enjoy this weekend.

        And if my editing clients (who are on tight deadlines) will give me a rest, I’m going to read for pleasure this weekend. Maybe blow some leaves.

  • Debbie Moore

    Member
    October 19, 2022 at 10:38 am

    @brendad53 I was hoping you would post about your results.  It can be very frustrating receiving and trying to understand medical information when it comes to PH.   I would say my PH was mild when diagnosed.  Like you, I would be out of breath (leaning over gasping for air) carrying a basket of clothes to the  laundry machine or loading the dishwasher, etc.  It is frightening when we can’t catch our breath. I have never considered myself an anxious person; however, anxiety has shown itself many times when it comes to my breathing.  I’ve learned little tricks to calm me down.  Listen to what the doctor has to say.   Be wise for what he recommends.  My first pulmonologist put me straight on the “basic” drugs which made me feel horrible and caused more water retention. I’m now off all of that but still feeling horrible and fear I’m getting worse.  I went to the cardiologist yesterday and through our discussion she said my PH was caused by water retention.  Now I’m not sure that is valid; however, I’m going to increase by torsemide and see how it goes for a month.  If no better it will be time to try medicine again.  I guess what I’m trying to say is PH is a crazy disease.  I think there is a world of reasons why we have it and doctors are trying to figure it out for each individual.  Be upset, be frustrated, but don’t give up hope.  We are here for you.

    • brenda-denzler

      Member
      October 19, 2022 at 11:42 am

      Hi, Debbie. Thanks for the encouragement. I agree that what your cardiologist said doesn’t make sense. At least, not to me. I’d sooner think that your water retention is caused by the PH, rather than the reverse.

      To say that I am hyperventilating due to some physiological malfunction of my autonomic nervous system? Not a problem for me. That would be plausible. I’m not panting and anxious and thus hyperventilating when I do the laundry, but rather, my breathing is being processed by my body in such a way that the net result is as if I were panting and anxious and hyperventilating. Not an issue for me to hear such a thing. It would make sense, though I’d want to know why my body is doing that.

      But to tell me that I’m “just anxious” alllllll the time, even when I’m not aware of being anxious at all, and I’m especially anxious when I do the laundry or carry groceries in from the car or am out having fun with friends or hanging with my grandkids…. and as a result I’m breathing rapidly and thus hyperventilating. AND IF I WEREN’T SO ANXIOUS I WOULDN’T HAVE THESE SYMPTOMS….that is an insult. That is the kind of insult that makes me want to go back to practicing my karate kicks. Note: I can’t kick very high. My blows tend to land somewhere a bit below the waistline. (A word to the wise.)

      I’m scared, Debbie, because for 11-12 years I’ve been declining and declining, and at this point I’ve declined to the point where I have to use a handicapped placard and used a wheelchair when I was in the airports and flew to/from Boston. Even using the wheelchair, by the time I got to my hotel in Boston, I threw my bags down in my room and flopped down on the bed to take a 2-hour nap. If this keeps on, I’m going to be bed-bound in another 2-3 years. That is not a welcome prospect.

      I need answers as to WHY it’s happening and what MEDICINE can do to help it stop. Or even make it better. Telling me I’m just anxious is not the answer. It’s not correct. But it does elicit strong emotions in me. Emotions of great anger. Emotions of hopelessness and feeling abandoned by the people I’m relying upon to help me.

  • Debbie Moore

    Member
    October 20, 2022 at 9:13 am

    @brendad53 I understand about being scared.  I’ve seen a decline since being off my meds.  I’m with you using the placard and the wheelchair at airports.  Your “hyperventilating” sounds like shortness of breath, not being out of breath but seriously not being able to catch your breath.  It is frightening.  Even though I have been diagnosed for almost a couple of years, I don’t feel as if I have made any progress.  The WHY is a question I think about every day.  When the doctors figure out the WHY that’s when they know how to treat you.  You know you have PH.  The test said so.  They need to keep looking for the WHY.  I’ll be praying for your peace and wisdom.

    • brenda-denzler

      Member
      October 20, 2022 at 9:16 am

      Thanks. I dare not hold out hope that I really do have a diagnosis. Since one test said “mild PH” but the other didn’t…. I don’t know. And because the last test I had said, “Lungs are fine” and that I was hyperventilating…. I don’t know what to think. I think I’m liable to break down and cry if the pulmonologist next week tells me I have PH. Not because of sadness, but because of relief at finally having a name for it.

  • brenda-denzler

    Member
    October 23, 2022 at 12:06 pm

    OK. An update.

    As is my wont, I have been trying to read up on “hyperventilation” in the medical literature. The really informative articles talk about medical matters that are way over my head. You gotta love biochemistry to get off on being a pulmonologist! The learning curve is going to be steep for me to become a reasonably well-informed patient. However, at this point here is what I am getting from what I’m reading:

    I have been taking the word “hyperventilation” as a code word for “just anxious; if she had better mental health she would have these symptoms; she’s doing this to herself.” Which I find highly insulting and frankly untrue. That doesn’t make sense of the facts/history. Some of the patient-oriented articles that you find on medical websites take this approach almost exclusively.

    Hyperventilation is discussed in medical journal articles, however, as a state of the body, and in these articles there is no hint of psychiatric accusation, actual or implied. It is discussed as a state of the body when certain biochemical things happen. In fact, it is a state that is artificially created in the body as a form of treatment for some kinds of brain injuries. (Again, having to do with the biochemistry of oxygenation, etc.) When they artificially create it as a treatment, it is apparently done by regulating the amount of O2 and CO2 in the patient’s air that they breathe.

    If I am understanding what I’m reading correctly (a big “if”), the body can become “stuck” in the biochemical state that they called “hyperventilation” and not be able to easily get out of it on its own. Normally when one takes in lots of O2, they offload a proportionate amount of CO2, and the body thus stays balanced as far as air intake goes. It balances itself. If a situation creates more O2 than normal or less O2, for sustained periods, the body re-adjusts itself to the new environmental conditions: more (or less) O2 becomes the new normal for the body, and it adjusts various other chemical levels accordingly. This does not happen without creating physiological effects as a side-deal. Ergo, the symptoms. The body becomes stuck in a constant state of biochemical hyperventilation that has nothing to do with the body owner’s state of mind at the moment or mental health in general.

    If I am understanding things correctly.

    We shall see what the pulmonologist here locally says when I see him on Thursday.

     

    • jen-cueva

      Member
      October 24, 2022 at 2:21 pm

      Hi @brendad53, usually I am not one to tell others to google away their diagnosis and things noted on reports. But in this case, it benefits you because you realize that “hyperventilation” can take on various meanings.

      I don’t feel like they said; it’s in your head; seek therapy. But it’s what you took away from the report. Hopefully, Dr. Ford will help you understand this all when you see him on Wednesday.

      As you know, you are pretty intelligent, and medical terms are something you’ve heard about for years. This week, I’m sending you extra hugs, love, prayers, and light.

      • brenda-denzler

        Member
        October 24, 2022 at 6:17 pm

        Yeah. I figured that, having ranted about the implied accusation inherent (to me) in the word “hypventilation,” it was only fair to post about an alternative understanding of the term that might be what was intended…… Fair is fair.

      • jen-cueva

        Member
        October 25, 2022 at 12:20 pm

        Hi @brendad53, I’m happy that you did post that with us. Because I bet, some of us have heard specific terms and thought of one thing when we could have guessed the incorrect meaning. This is how communications and relationships often fail.

        Of course, I know it often depends on my mood as to which interpretation I think of. Do you find yourself doing that, too?

        I know you are ready to see Dr. Ford tomorrow and hear his thoughts. I am looking forward to hearing them, too.

      • Colleen

        Member
        October 25, 2022 at 1:28 pm

        @brendad53 one of the many important things we do here on the forums is share what we learn, so thank you. Good luck tomorrow!

  • jen-cueva

    Member
    October 27, 2022 at 1:07 pm

    Hi @brendad53, I wanted to check in and see how your appointment with Dr. Ford went yesterday. Please keep us updated when you feel up to it.

    The bigger question is, how much ice cream did you enjoy before that appointment? Hugs are coming your way.

  • brenda-denzler

    Member
    October 27, 2022 at 2:21 pm

    Jen and Colleen and Mama Bear and all…..

    The appointment that was originally scheduled for today and then re-scheduled for yesterday was RE-re-scheduled for today again! I just got home a few minutes ago and had my first food of the day. Planning on polishing off that half-gallon of ice cream in a few minutes.

    Going to write in a bit more detail after the ice cream. Must make notes on everything said during the consult. But a preview is:

    It was really good. Really good. Of course, as the minutes roll by, I start questioning everything and getting suspicious, but THAT is my mPTSD at work. His bottom line diagnosis: non-psychogenic hyperventilation combined with poor oxygen exchange in my tissues, probably with a mitochondrial dysfunction overlay. In his experience almost nobody who is having psychosomatic symptoms says they are short of breath. And there IS measurable evidence that there is something amiss in my system that they don’t fully understand. Some mild pulmonary hypertension, but not enough to be concerned about.

  • brenda-denzler

    Member
    October 27, 2022 at 6:27 pm

    OK. I’ve made my notes about what was said at my meeting with Dr. Ford today. Here’s the gist:

    He began by asking me what the folks in Boston had told me about the results. I said nothing much, but I had the reports from the right heart cath and the CPET. I said they gave contradictory results as to whether or not I have PH, and I wanted to ask him about them.

    He looked at the reports again and said that yes, I do have mild PH, but it’s not worth worrying about. He said that the CPET says that heart or lung issues do not contribute to my shortness of breath—but only in the context of THAT test. Not in general. So the RHC report is correct, and the CPET report is correct, and they do not truly contradict.

    I then asked him if the gist of the CPET report, with its saying my problem is “hyperventilation,” is not to suggest that my symptoms are caused by poor mental health, and if I had better mental health, I wouldn’t feel like this.

    He emphasized several times and very clearly that this is NOT what is meant by “hyperventilation” in this context. He pointed me to a blog that discusses a study in which Waxman (Boston doc) participated where it is specified that the hyperventilation they are talking about is non-psychogenic. Rather, they call it “pathological hyperventilation” to emphasize that it is based in flawed biochemical processes.

    Ford said that in my case, I have flawed oxygen exchange at the cellular level. It is linked to more alkaline blood than what is needed for proper O2 and CO2 exchange. This is described as pathological hyperventilation. I may also have some mitochondrial problems contributing to the symptoms.

    Nobody knows why this happens or even very much about what causes it. I told him that I was grateful to just have a diagnosis, of sorts. He said yes, I now have test-based evidence that something is physiologically amiss. Unfortunately, he said, they also don’t know much of what to do about it. He suggested four supplements I might want to try. I was already using two of them daily when all of this began and was getting worse, but I told him I was willing to try them again. Ka-ching!

    Thank you, everyone, for standing with and behind me, here.

  • V.R. Peterson

    Member
    October 28, 2022 at 6:54 am

    Thank you for the update, @Brendad53. Did Dr. Ford tell you symptoms to watch for that would indicate you need to return?

    I wonder if you were to share your test results with your general practitioner, including the blood work they ran, if he might be able to suggest a doctor that deals with either blood disorders or mitochondrial dysfunction overlay (or both).

    In any case, I’m glad you have test results that indicate this isn’t all in your head (which I’ve *never* believed). I hope the four supplements Dr. Ford recommended help.

    • brenda-denzler

      Member
      October 28, 2022 at 8:19 am

      Hey, Mama Bear. I asked him about that. When should I ask to see him again? If symptoms worsen? After 6 months? Or….? He said he wanted to see me in 3-4 months, to see how things are after I start taking the supplements. And he briefly indicated that if they didn’t help much, we could try something else maybe. He didn’t elaborate on what that might be, and I didn’t push.

      • V.R. Peterson

        Member
        October 28, 2022 at 8:40 am

        @brendad53, Dr. Fords reply to your question about coming back and maybe trying something else is another indication (at least to me) that he’s taking this seriously, and he wants to get to the bottom of it.

        Remember that PH is a progressive disease. You’ve been diagnosed with mild PH, and it could progress slowly or a bit more rapidly. Eventually, they’ll need to do something for that, in addition to the other issues that concern Dr. Ford now.

      • brenda-denzler

        Member
        October 28, 2022 at 8:49 am

        I’ve been thinking a bit about that—while right now he’s not concerned about the mild PH, if/when it progresses, he may become concerned. On the other hand, how will we be able to separate out PH symptoms from what I’ve got going on right now?

        I’m still trying to sort everything out in my head.

      • V.R. Peterson

        Member
        October 28, 2022 at 9:30 am

        I’m not sure how to sort out the mild PH from the other medical concerns. It might be a good idea to ask Dr. Ford at your next appointment whether or not he will be testing regularly to see if your PH has remained stable.

        That’s what my son’s doctor is doing… The PTE surgery greatly improved his quality of life, but he gets a RH cath annually, just to make sure his current mild PH (pressures of 27) haven’t increased any.

        If I’m remembering correctly, his pressures of 27 are less than your pressures that are considered mild PH? I remember you mentioned your pulmonary pressures, but it’s still early in the Utah, and I need more caffeine.

      • brenda-denzler

        Member
        October 28, 2022 at 10:12 pm

        Vicky, Ford also said that symptoms like mine are not fatal and I will not get to the point where I’m bed-bound because of this. I didn’t actively contradict him, but I don’t really believe him.

        First, this whole condition has only been identified and studied for maybe 10-15 years. As far as I can tell so far, anyway. So they don’t have a lot of longitudinal data on it.

        Second, this has been getting slowly, progressively worse and worse for more than a decade already. Why does he think that this progression is going to stop, now that it’s this far? On what grounds? I think he’s wrong.

        But I do think that Ford is genuinely invested in trying to find answers for me and, now, some kind of help.

      • jen-cueva

        Member
        October 31, 2022 at 1:20 pm

        Hi @brendad53, I agree that PH is usually progressive, including mild PH. Most PH specialists want to monitor it via Echo or RHC annually, as @mamabear007 mentioned.

        When do you see Dr.Ford again? I also agree that he has your best interest, and at least he is looking into things to try and decipher your symptoms. He may think that if the supplements help, then that is what he needs. Plus, seeing you again in 3-4 months sounds like an excellent plan.

        Which specific supplements did he prescribe?

      • brenda-denzler

        Member
        October 31, 2022 at 4:20 pm

        Hey, Jen. Nobody seems very interested in the PH. Needless to say, I’ll be keeping an eye on it and requesting a re-check in 12-18 months if the doc doesn’t.

        The immediate problem seems to be my body’s inability to exchange oxygen and carbon dioxide. I was leaf blowing a couple of days ago and noticed, after I’d been at it for a while, that my nail beds were all pale lavender. And the base of the beds was a darker shade of lavender. Not enough oxygen. But a couple of hours later when I was sitting down and resting, I noticed that my nail beds were all pink and looked pretty much like the surrounding skin. Better oxygenation.

        I’m finding myself having all kinds of emotions about it. When I was telling myself I needed to do some work outside, but I was feeling exhausted and my breathing wasn’t great, I said, “Hey. I don’t have to do ANYTHING. I *am* sick. I can prove it. I need to listen to my body and just rest. I’ll do my work on a day when I’m feeling better.” On the other hand, when I went to my son’s Halloween party and after 2.5 hours was beginning to be so exhausted that I was fighting back tears, I was thinking, “This sucks. And it’s not going to get better. And if the past is any indicator, it *will* get worse. This is so depressing.”

        The supplements Dr. Ford wants me to try will cost me $300 for the full three months until I see him next (February sometime). That’s $100 a month, which kinda makes me choke a bit. But on the other hand, I’ve already spent so much out of pocket, what’s another $300? And if it helps, then it will be well worth continuing and finding a way to cut my expenses elsewhere. If it doesn’t help, then it’s only for 3 months, so no sweat.

        The supplements are B2, Co-Q 10, L-Carnitine, and creatine. The creatine is proving to be a bit of a problem because it is, by its nature, mammal-derived. And I can’t do mammal. Talk about not being able to breathe! THAT will do it! So I’ve found an artificial creatine powder I could use. But I don’t want to put something like that into my body. So I’m stymied what I’m going to do about that.

      • jen-cueva

        Member
        November 1, 2022 at 12:10 pm

        Hi @brendad53, I am sorry that you’re dealing with this emotional turmoil as you try and put your puzzle together. I am grateful that you are starting to listen to your body more and know when to rest. Offer yourself grace; you deserve it!

        The extreme fatigue you report at the Halloween party is relatable. I often cried when I reached that point. Not having all the answers you hoped for affects you in many ways. It would be me too.

        I’m hugging you and sending you love, light, and prayers that something will come out of this. Maybe Dr. Ford will connect more with Dr. Waxman, and they can discuss the best plan. Or, have you thought of reaching out to Dr. Waxman’s office? Maybe they can do a virtual consult since he has seen you in person.

        Those supplements are pretty common for those with PH, too. I know several PHriends who take most of those. $300 for 3 months sounds expensive. Did he write an RX to see if your insurance would cover some of the cost?

        @mamabear007 offers some excellent links to financial assistance programs. Maybe Unmet Needs would help; they are usually quick and very helpful. Perhaps you can call and apply today since it is the 1st! Try to get an application in ASAP.

  • Colleen

    Member
    October 28, 2022 at 9:48 pm

    @brendad53 I’m sorry I haven’t been available to respond sooner. I know you are still have questions and concerns but I’m feeling a bit relieved for you because Dr. Ford sounds like he is truly trying to do his best for you.

    @mamabear007 has brought up excellent points and good advice. I hope the journey forward brings you more answers and hopefully treatment.

    I wonder if there is a such things as doctors who specialize in pathological hyperventilation or have at least studied it more than others?

    • brenda-denzler

      Member
      October 28, 2022 at 9:56 pm

      Yes, there are such doctors. Aaron Waxman is one. David Systrom is another. Both are at Boston. Both are working with this patient population. First, to try to understand the condition, which is fairly newly discovered. Second, to try to figure out how to treat it.

      • Colleen

        Member
        October 28, 2022 at 10:05 pm

        @brendad53 I hope your medical information is being shared with them?

      • brenda-denzler

        Member
        November 1, 2022 at 9:22 am

        Hey, Colleen. Yes. Aaron Waxman is, in fact, the doctor who supervised my test.

        I keep trying to figure out how to contact him and/or Systrom directly to tell them that I would be interested in knowing about any clinical trials or other research requiring patients that they might have in the future. I would consider being a guinea pig for them…which is saying a lot. Because due to my mistrust of the world of medicine and those who operate therein, I don’t readily do clinical trials when the opportunities present themselves. I evaluate them very carefully first. But I would like to have the opportunity to evaluate any with them for which I might be a good participant. I’ve written to Waxman’s PA conveying the message. That’s the best I can do at the moment.

  • brenda-denzler

    Member
    October 31, 2022 at 4:35 pm

    Just got a notice from my health insurance about the charges from Newton Wellesley Hospital in Boston for the Level 3 cardiopulmonary exercise test.

    One-half day in the hospital.

    Cost:  $27,738.92

    And you know what I spent out of pocket for transportation, food, lodging, etc.? Another $2100+.

    Wowzer.

    • V.R. Peterson

      Member
      October 31, 2022 at 5:51 pm

      @brendad53, now that you have an official PH diagnosis, you qualify for the financial help available at PHA’s website (medical and non-medical things like travel, lodging, utility bills for your home, etc). It won’t matter to the non-profits that the doctors aren’t much interested in treating the PH; they should be able to help because you have test results that prove you have it. The link is:

      https://phassociation.org/help

      • brenda-denzler

        Member
        October 31, 2022 at 6:32 pm

        Thanks, Mama Bear. It appears that the PH-specific funds are not available at this time. And the more general funds don’t seem to pan out, either. Ah, well…. It was worth checking!

      • brenda-denzler

        Member
        November 1, 2022 at 9:52 am

        Yes, m’am! Done and done. THANK YOU! Even if nothing comes of it, at least I know I tried.

      • V.R. Peterson

        Member
        November 1, 2022 at 9:57 am

        I’ll definitely say a prayer that something comes of it. ????????

  • V.R. Peterson

    Member
    November 1, 2022 at 7:19 am

    @brendad53, the Unmet Needs non-profit (teamphenomenalhope dot org) re-opens at the beginning of each month. Today would be the perfect time to check on what’s available.

    • brenda-denzler

      Member
      November 1, 2022 at 9:58 am

      OK. HERE’S the message I should have been responding to.

      Again…THANK YOU! Even if nothing comes of it, at least I know I tried. I appreciate you being my faithful guiding hand throughout all of this. I am doubtful that I could have stayed the course without your support.

      And, someone mentioned, I think, that although the PH diagnosis is “mild” and seems to be taking a back seat in the medical mind, it may be that the more urgent issue to address is the impaired SOE (systemic oxygen extraction) and by comparison the mild PH is not that big a deal. But that the doctor will keep his eye on it over time and address it as/if/when it becomes a bigger part of the pathology at work. And I would agree. That sounds plausible.

      Honestly, my emotions about all of this are all over the place right now. I hadn’t expected it would be such an effort to maintain some kind of emotional equilibrium. I’m sure I will settle in, after a bit.

  • V.R. Peterson

    Member
    November 1, 2022 at 10:04 am

    @brendad53, it appears that PHN is posting our comments out of order. Try to remember, when your emotional equilibrium seems all over the place and out of whack, it’s perfectly acceptable to rest, body mind and soul. This is true no matter how you happen to be feeling physically. My emotional-equilibrium-getter-backer of choice is knitting to calm my mind. The housework can wait; my emotional health can’t.

    (Edit to correct a word)

    • brenda-denzler

      Member
      November 1, 2022 at 10:08 am

      My EEGB is ice cream. Lots of it. 🙂

      • V.R. Peterson

        Member
        November 1, 2022 at 10:24 am

        Hmmm… Now I want to run to the store to get some ice cream! Not gonna do it because it’s an 30 minute trip just one way. Maybe next time I get groceries.

      • brenda-denzler

        Member
        November 1, 2022 at 10:28 am

        Wow! You DO live out in the boonies, don’t you?!! I’m about 10-15 minutes away from groceries, so I also have to think ahead when I’m going into town and be sure to stop for whatever I might need. (You’d be shocked and appalled if you knew how often that meant ice cream or cookies or some other sort of junk food!)

      • jen-cueva

        Member
        November 1, 2022 at 12:14 pm

        I LOVE your EEGB @brendad53! Ice cream always makes things better, Right?

        LOL, @mamabear007 is in the boonies. I can relate to visiting my parents’ and late grandmother’s homes. I’m used to having anything within 10-15 minutes, including several beaches. It is a nice change for a few days, then I go nuts!

  • V.R. Peterson

    Member
    November 1, 2022 at 11:08 am

    The closes thing we have to a business is our post office and the booster club that raises money for town projects so our property taxes don’t go up except for the county portion. We don’t even have a gas station. Got less than 100 homes and less than 400 residents (and that includes children). I love it, but it does take some trip planning to live out here.

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