Viewing 18 reply threads
  • Author
    Posts
    • #33515
      Brenda Denzler
      Participant

      Well, the dreaded day has come and is partially done. I saw Dr. Ford this morning for an evaluation of my SOB. He’s a soft-spoken, nice guy who knows how to listen. He’s very thoughtful. I am told that I passed the initial screening tests involving blow into the tube, blow, BLOW BBBLLLOOOWWWWW! I always do. No matter the test. EKG. CT. Whatever. And when I pass the screening, it kicks me out of the running for any further work-up, so I leave with my symptoms intact and getting worse. And no answers.

      But Ford took me seriously. He did some lab work. And he ordered a right heart catheterization and a pulmonary angiography. And I have a follow-up appointment with him in May. MamaBear says if the tests come back positive, he might move that up.

      So all in all, not a bad day. I must say that last night I was having a panic attack and had to take an Ativan. And this morning I was so nauseous I could hardly stand it. But the appointment went well. My thanks to all the folks here who have been holding my hand up to now. Don’t let go yet! There’s more to come!

    • #33518
      Jen Cueva
      Keymaster

      Wow, @brendad53, this update makes me feel much better. My face has a huge smile. I can feel your relief as your anxiety is not as bad because a doctor listened and validated your concerns.

      Taking that Ativan the night before was helpful, I’m sure; so happy to hear you had it available. That must have been one long night and such a long and exhausting day. How are you feeling today?

      Are you awaiting dates for the RHC- pulmonary angiogram? I agree with @mamabear007; Dr. Ford may move that appointment sooner depending outcome of your tests. I don’t know if he will, but all of my PH doctors have talked to me right after my RHCs, and that gives me a little time to ask a few questions. Some do, and others go into the next RHC immediately and stay busy with those all day.

      It sounds like overall, it went well. Although, I know getting an actual diagnosis after ten years of being dismissed will bring all sorts of emotions for you. We continue to be right next to you, Brenda. This was a huge hurdle for you that you dreaded, and look, you made it!

    • #33521
      V.R. Peterson
      Participant

      Thank you, @brendad53, for letting us walk along side you as you courageously saw another doctor, not knowing whether or not he’d be like the rest. Thank goodness he wasn’t.

      I, for one, will not let go of your hand. Together, we all have this, right alongside you. I’m confident you’ll get answers that will lead to better health and deeper breathing.

    • #33523
      Jen Cueva
      Keymaster

      Well said, @mamabear007! That was such a courageous moment that @brendad53 tackled like a champ! I’m incredibly proud of her and was so excited to read this update!

      Yes, this sounds promising, and we are walking along holding your hand through it all. Hopefully, you can relax and stay warm indoors today.

    • #33526
      Colleen Steele
      Keymaster

      @brendad53 I can understand why you still feel nervous but I do hear a lot of relief in your words and I’m really happy for you. It sounds promising that you have finally found a doctor that you can feel comfortable with and trust.

      Every appointment, test and procedure will be a step closer to an answer and treatments that will hopefully improve your quality of life.

      We never let go of anyone’s hands here. You can count on us!

    • #33527
      Brenda Denzler
      Participant

      Thanks, folks, for the words of support. Jen, I have felt good today about the experience yesterday. I had my port flushed, had lunch with a friend, went shopping with her briefly, and then spent a bit of time at my grandkids’ house visiting with them. Today I planned for “fun” stuff, so that I’d have something to look forward to.

      When I was visiting at the grandkids’ house, I heard my phone ring. But I was back in the bedroom playing with the 3-year-old, and I didn’t rush to answer it. Turns out it was cardiology calling. I assumed they were calling to set up the RHC and the PulmonAngio. By the time I checked my phone and voicemail, it was after 5:00, so no point calling her back today.

      When I got home, this evening, I found another test result in my patient portal. Pro-BNP is 173. Upper limit of normal for this lab is 125. So maybe that’s why the cardiology folks were calling? To expedite my getting those tests?

      Remember me saying my friend and I went shopping today? I wasn’t able to walk around for long. I had to sit. Now I know why.

      Colleen and MamaBear, I’m not brave, but I appreciate your thinking of me in those terms. I don’t know what I’m going to do, if these two upcoming tests show CTEPH or CTED. That question is percolating in my head constantly.

      Question: Is some level of heart failure common for people with various forms of PH?

      Question: How could I have just recently passed an echocardiogram, yet have a Pro-BNP like this?

      The Pro-BNP and idea of heart failure does explain why I can’t stop gaining weight the last week or so, even when taking a diuretic. It explains some stuff.

      • #33528
        V.R. Peterson
        Participant

        @brendad53, yes, PH can cause heart failure. It’s usually right heart failure, but some patients suffer from left heart failure instead. Knowing whether it’s right or left heart failure can help a doctor determine which WHO Class of PH a patient has. You can read more about PH classes here: https://phassociation.org/types-pulmonary-hypertension-groups/

        When my son was first diagnosed, he had right heart failure in the beginning. By time he had his PTE surgery, he was in total heart failure.

    • #33533
      Jen Cueva
      Keymaster

      Hey @brendad53, I am grateful that this sounds like you are moving in the right direction with your care. Planning that fun day after such a busy and overwhelming day was perfect!

      Yes, as @mamabear007 mentions, heart failure with PH. I was in congestive heart failure when I was diagnosed. Thankfully, it’s better now and manageable with several diuretics. It certainly can be the culprit of your swelling.

      I’m sorry to hear about your elevated BNP. This may not show up on an Echo until your heart is enlarged more. RHC will be helpful to get more answers on this. I hope that they will get your tests scheduled to get some much-needed answers.

      Mamabear shared some helpful information that you can read at your leisure.

      In the meantime, we are here holding your hand through this. You are brave; we know how difficult mustering up the courage to go to another doctor.

      I’m sending you extra hugs and love.

      • #33534
        Brenda Denzler
        Participant

        Well, elevated BNP is only very mild, and Dr. Ford is quite unconcerned about it. In fact, in messages to me today that shared my lab test and pulmonary function test results, he said everything looked fine. He is not too concerned.

        Things will look good with the RHC and PA tests, I predict. And I will once again walk away with no answers and no help.

        It’s not that I want to have PH. It’s just that I want answers, and I’ve been looking for them for so long, and in the meantime getting slowly worse and slowly worse. At this point “worse” is getting pretty bad for me. Too bad it’s not showing up well on tests. I suppose I will have to have a full-on cardiac arrest before medical science will begin to “see” anything.

        Meanwhile, I am not being reassured that I can have the RHC without sedation, which is making me very, very, VERY anxious.

        I had a good weekend. I guess that has ended. Thanks for your continued hand-holding and support.

        • #33537
          V.R. Peterson
          Participant

          @brendad53, I am still holding your hand while you wait for more answers. While it isn’t much, I’m still here for you.

        • #33539
          Jen Cueva
          Keymaster

          Hi @brendad53, I know how frustrating this is for you. But I do think that the RHC will offer a bit more information so they can either PH in or out for you.

          Did they already schedule your RHC? I would suggest that you tell Dr. Ford and his office that you prefer NOT to be sedated for that. I’m sorry that you’re still waiting for answers. Know we are right beside you, holding your hand. Take one step at a time.

    • #33542
      Brenda Denzler
      Participant

      Hey, Jen. Dr. Ford will not be doing the RHC and pulmonary angiogram. Dr. Rossi will. I told his nurse, Deanna, yesterday that I did not want sedation. She said she would convey my “wishes” to Rossi.

      I responded to say, “Uh…this is not a ‘wish.’ The term ‘wish’ is too nebulous and iffy. This is a need, not a wish.” And then I explained my childhood medical trauma, terror of sedation, and having not had sedation in settings where others often (or always) do. She said she would pass the info along.

      That, combined with Ford being ho-hum about the lab results and breathing test results, combined with my kids not being able to go with me for the procedure (and I never ask them to go with, so this was a rare event for me to ask). Just not my day, yesterday, for feeling seen and heard and valued.

      Thanks to the folks in this group, I am not totally without people in my corner.

      • #33543
        Colleen Steele
        Keymaster

        @brendad53 I was concerned in your previous update that maybe they took the RHC off the table. I’m glad to hear you can still proceed with that. I know we sound like a broken record about it but that will provide answers you can trust.

        Cath’s in adults are often done without sedation so it shouldn’t be an issue. I’ve known PH children who transitioned to adult care who actually had to tackle their first cath without sedation. Ask your doctor why he is adamant about sedation if that turns out to be the case. I just hope no matter what you will be able to proceed with it.

        Keeping you in my thoughts.

    • #33549
      Brenda Denzler
      Participant

      In the ever-changing kaleidoscope of my travels through life with Whatever-This-Is, my right heart cath and pulmonary angiogram have been re-scheduled. Now they’ll be on March 8th. Six days from now. The doctor couldn’t do the procedures as originally scheduled, so he changed the date.

      Anxiety level now higher on a semi-permanent basis until then.

      Friend came over today to help me with some landscaping. He’s helped me many times in the past, and he knows how I can work. And no longer can. I asked him today if he’d be a witness before my doctors if the docs try to say all my tests are fine and I’m healthy as a horse. Without a hesitation, he said yes. And he was being serious about it.

      My friends who visited last fall and made me promise to see my doctor about this…they commented on how pale I was the day after I had “tanked” for lack of oxygen while in the mountains. I had been noticing that, too. How pale I looked in the pictures we took the following day.

      I’ve also noted that my fingernails sometimes look just a little “dusky.” Not really blue. But not a good, healthy pink/red, either. Once or twice, before PH was ever on my radar, I have noticed that my lips looked a little blue-ish.

      But you know, I really don’t think they’re going to find anything with the two tests.

      Thanks for listening, everyone………

    • #33553
      Jen Cueva
      Keymaster

      Hi @brendad53, often the doctor who performs the RHC may be different, and that’s OK. I’m confident that you are in good hands.

      It sounds like the nurse will convey your messages, and with “wish,” I feel that means your requests. This is usually done without sedation for the most part. On the day of the procedure, you can also remind the nurses in the cath lab of this if they don’t have this notated in your chart for some reason.

      March 8th will be here before you know it. I do hope this will offer you so much-needed answers. We continue to walk right beside you. I’m also grateful that you do have some support around you. You can do this!

      • #33555
        Brenda Denzler
        Participant

        Don’t like the sound of that, Jen. I want the doctor to whom I was referred to do the procedure. Not someone I don’t even know at an even greater level of abstraction than what I have right now with the person I was referred to. I’m not confident that I’m in good hands unless I can read up about the person in question.

        The sad truth is, Jen, that I do not live in a world where I can assume I will be “safe” or taken care of. Most ESPECIALLY when it comes to the medical world. In that world, I am always at risk, always in danger…and from the very people who are supposedly there to help me. Those are my feelings. And I can try to “reason” them away and tell myself to relax, etc., etc., etc. But that doesn’t change anything. I still feel that way. It’s not without cause. And those causes got burned into my brain, apparently. Because now I cannot make them go away. It’s not that I won’t let go of the past. It’s that the past won’t let go of me.

        That’s one reason why, when I was hospitalized for neutropenia during my cancer treatment, I couldn’t sleep. For three days, I couldn’t sleep for more than a short burst, and then I’d wake up again. It wasn’t because my brain was churning. It was because my body could NOT relax as long as I was in such a dangerous place. You have to be on constant alert when you are back in the place where you got hurt before. Where you were neglected before. Where your integrity and autonomy as a thinking human being was violated repeatedly, before.

        So I need to feel that I have as much control as possible when I’m on medical turf. Ergo, no sedation. Ergo, the need to have SOME kind of relationship with the person directly delivering my care, so that they see me as a person, not a thing upon which they need to perform this or that procedure. And if the only kind of relationship I can manage is by reading up on the person in question before I present myself to them for the procedure, so be it.

        I know it’s screwy. Most people aren’t like me. Then again, most people haven’t had my medical history, either. Though you’d be surprised how many of us there are out here. Just like me. For very similar reasons.

      • #33556
        Brenda Denzler
        Participant

        As you can see, it doesn’t take much to trigger my mPTSD. Sorry, Jen!

    • #33608
      Brenda Denzler
      Participant

      Had my right heart cath and pulmonary angiogram yesterday morning. No sedation. It is do-able, as folks here have said. But it’s also not something one would want to do real often if ya’ didn’t have to. I made it through bravely, but with fists and butt-cheeks clenched against the pressure and pain. After I had been brave for the procedure, I got weepy immediately after it was done. Let all of my “chicken” out, then.

      The medical folks could not have been nicer. I explained “history of childhood medical treatment trauma” and “kinda a white-knuckle flyer” now with medicine. They were fine with it. No one heaved a deep sigh or rolled their eyes. And they treated me with great respect and care.

      Jonathan Shay has worked a lot with PTSD in military veterans. He writes in one of his books that when the “social contract” gets destroyed, as it does with PTSD, trust is gone. Trust in whatever institution betrayed you, is gone. And it cannot be won back on a global basis. It has to be won back on an individual basis. Each person who represents the institution has to earn back the trust of the traumatized person for him- or herself. And it very seldom happens that the trust one person earns can be applied, by the traumatized person, to ALL of the people in that institution. Trust is seldom ever a globally bestowed thing, after that. It’s only bestowed person by person.

      That is why things become less traumatic and frightening for me after I’ve had one or two positive encounters with a health care provider. Once I know them, somewhat, as a person and feel confident that they somewhat know me, as an individual, and I have seen some evidence that they respect my autonomy, and I have gotten a ‘read’ on them as individuals, it’s easier for me to trust and to relax with them. That’s why I feel, today, as if I could go back and work with the medical folks who worked with me yesterday.

      The test results regarding pulmonary hypertension were negative. I am fine. Healthy. The pulmonary angiogram shows a beautiful pattern of branching vasculature in my lungs on both sides. If there was a defect there (and the docs said there was not), it would have had to be a small one, because on the “big picture” level, it all looked beautiful. I saw the images. They were impressive. And indeed, that was the final diagnosis: I am fine. No pulmonary hypertension of any sort, and not even any trace of the PE that I got back in 2019.

      They apparently did two blood tests while they were in there, at two separate times. The second time the results were slightly lower than the results the first time. The results were released automatically by EPIC. The two tests were hemoglobin and “oxyhemoglobin.” While I understand what hemoglobin is, I don’t know much about oxyhemoglobin. I’ve spent some time trying to understand oxyhemoglobin by doing some online study. My hemoglobin is low-normal. My oxyhemoglobin, which as I understand it is a measure of how efficiently my hemoglobin carries and delivers oxygen, is 71%. I assume that closer to 100% would be desirable, but that kind of information is devilishly hard to find online!

      So I’m guessing that Dr. Ford, with these tests, was asking whether I had a lung problem or a problem with my oxygen transportation system via the blood. If I have understood the blood tests correctly, it might explain why I get so short of breath when I exert myself.

      This all means that I don’t belong in this forum, or on this site, with all of you. Whatever my problem is (with my breathing, I mean!), it’s not some kind of pulmonary hypertension. I’ve learned a lot about PH from all of you, and I want to thank you extremely heartily for the time and info and just plain old support you’ve shown to me, over and over, in the last several weeks. You’ve all been very gracious. And knowledgeable. And gentle. I appreciate you hugely for all you’ve done for me.

    • #33609
      Jen Cueva
      Keymaster

      Wow, @brendad53, I’m so proud of you for getting through these procedures. It sounds like although it isn’t PH, you tackled a massive hurdle with PTSD. That’s inspiring to hear!

      It sounds like you were in great hands, and I’m so happy to hear that everyone was kind and you felt comfortable.

      But I’m sorry that you will continue to search for answers. You are correct about oxyhemoglobin. It makes me think about things such as polycythemia vera or something. Have you seen a hematologist already or maybe talked with the oncologist? You already have a history of anemia with your low hemoglobin, correct?

      Although, it sounds like you don’t have PH. Don’t stop advocating for yourself. You know that the symptoms are there. Maybe Dr. Ford and his team will have some suggestions for you.

      It’s been our pleasure to hold your hand as you go through this journey. Please let us know if we can support you in any way. That’s why we are here.

      Take today to rest, try not to think about all of this, and start again tomorrow. You’ve come far since joining us here. It’s been a pleasure to watch you grow as you walked through each stage, us holding your hand.

    • #33613
      Colleen Steele
      Keymaster

      @brendad53 I am resharing what I posted to you earlier. It looks like it’s got lost somewhere in the forums so in case you didn’t get to read it…


      @brendad53
      you do not have to leave. We can still support you through symptoms and medical care that we are familiar with.

      My heart goes out to you. At least you can trust the results of a RHC. You can confidently cross that off the list. I think another thing you have achieved is that it sounds like you have found a capable and supportive medical team. I’m feeling hopeful that eventually they will figure out what you are dealing with and recommend a treatment that will help.

      You are stronger than you give yourself credit for. Hang in there and we will “hang” out with you.

    • #33618
      Brenda Denzler
      Participant

      I just heard back from Dr. Ford about the significance of the oxyhemoglobin test. He says it’s a normal value and nothing to “worry” about.

      Jen, as the subject of one of my anxious rebuttals when you once used a phrase that set me off, you will be interested to note that I restrained myself today with Dr. Ford when he said “worry.” I wanted to tell him that I’m not worried. I’m angry and frustrated and tired of having no answers, and filled with despair every time I get my hopes up that there may be an answer…and then the tests tell me I’m perfectly fine. But I didn’t. The real reason I managed to restrain myself: doctors do not react well to expressions of emotions like that. I wrote a bunch of stuff to him, then deleted it.

      He wants to refer me to Brigham & Young Women’s Hospital for a RHC in combination with a bicycle exercise test. Anyone have any experience with them?

      He is chasing a “dysautonomia” angle. I have mixed feelings about going. All the old PTSD fears–new doctors, and this time even a new hospital system, will my autonomy be respected, will someone harm me through careless inattention or lack of experience? And the usual illness fears–will they really do anything to help me other than give me yet another test telling me I’m fine?

      Bottom line is, once again I have a test that shows I’m fine. No answers. I am filled with despair. Complete and utter despair.

      • #33619
        V.R. Peterson
        Participant

        @brendad53, it sounds as though Dr. Ford is still considering PH. The RHC that he is recommending will detect exercise-induced pulmonary hypertension. I’ve known a few people whose RH cath was negative for PH, yet when adding exercise, it clearly detected pulmonary hypertension. I think that’s a good sign that he wants to do the RH cath with exercise.

      • #33621
        Jen Cueva
        Keymaster

        Oh @brendad53, my heart goes out to you as you are probably experiencing so many emotions at this time. As @mamabear007 says, it does sound like Dr.Ford is still trying to figure out if you have possible exercise-induced PH. I have had this test done during an RHC and echo when first diagnosed. I’ve also had RHC using saline bags for exercise on my upper body to see if that increases my pressures more.

        Mine was done because a local doctor first knew something was wrong and did the Echo with exercise using those exercise peddlers, like this one. My pressures were only what many doctors dismissed as “out of shape”. But using this, my pressures doubled. I no longer need exercise to elevate my pressures since I see an accredited PH specialist. They don’t wait until pressures are almost 100, which I was told at one time.

        Please know that we will continue to hold your hand, and you are always welcome, even if they find out it is not PH. We are all rooting for you to get that much-needed diagnosis and validation finally.

        Let us know when this is scheduled. I hope and pray that it’s not a long wait for your sake. Maybe Dr.Ford will speed this up for you. I’m sending you extra big hugs from San Diego.

    • #33628
      Brenda Denzler
      Participant

      Jen, it lifts my spirits to realize that someone knows about this kind of test AND that you were first diagnosed using the test (did I get that right?). It’s not that I want to have PH, but I do want answers. Treatable answers. (I am also aware that for most PH, it is progressive at varying rates of rapidity. So there is an irony in me thinking of PH as a “treatable” diagnosis.)

      In the last couple of months a symptom that used to be occasional has become constant—the “taste” of blood (or moldy socks!) when I cough. (And I cough all the time, now. Usually mildly.) And whereas I never, EVER used to bring up phlegm when I coughed, in the last two weeks or so I’ve spontaneously brought it up with just a mild cough. (It’s never bloody, however. Milky white/yellow.) I have no idea whether this is relevant or beside the point. Have reported it to Dr. Ford and my PCP, however.

      Thanks for letting me hang out here a bit longer. I appreciate the company and the hand-holding.

      • #33653
        Jen Cueva
        Keymaster

        Hi @brendad53, yes, that exercise Echo then RHC showed the doctors I had problems and sent me to a PH specialist. These doctors weren’t PH specialists at that time, but one cardiologist was the one who believed me and stood by while trying to help me get answers.

        This could be Dr. Ford for you. LIke @gward and @crisincincy both mention, don’t stop advocating and keeping track of your symptoms as I know you do already. I hope you ladies have a feel-good day and enjoy a relaxing weekend.

        My heart is joyful, reading the outpouring of support from our members.

    • #33630
      Gayle Ward
      Participant

      Brenda, don’t give up.  Medicine often have to find a diagnosis by elimination. It took over a year for my Medical team to get my diagnosis and start treatment. It’s frustrating but you need to keep advocate for yourself.  Keep a journal of your symptoms which might provide valuable information to provide cues for your physician.

      Hang in there. You are in my thought and prayers

      gayle

       

      • #33655
        Colleen Steele
        Keymaster

        @brendad53 was having difficulty getting this to go through so I am posting it for her.


        @gward
        , I’ve been living with this as a progressive decline for at least 10 years, now. I’ve seen so many specialists to try to figure out what was going on, but on the whole, the tests always showed that I was ”healthy as a horse,” and I too often got blamed for my symptoms. And, in fact, at times doctors indicated that they believed I’d lied to them, when I told them I was losing the ability to do the exercise I had been doing for some time already, and a few minutes later they told me that there was nothing wrong with me and I should start exercising.

        I had determined to just get worse until I had an acute episode and then, if I didn’t die from it, maybe medical science would be able to see what going on and help me at last. Last fall, my visiting friends (not doctors) are the ones who witnessed that acute episode and insisted that I consult in the world of medicine again. So here I am, chasing a rainbow one more time.

        I hope you’re right. I hope an answer is just around the corner.

    • #33631
      Cris Dingman
      Participant

      Brenda, don’t be too fatalistic over the term “progressive”. Many PH/PAH patients are 20+ years unto their lives since diagnosis. Take as good care of yourself as possible, and try to stay as active as your personal ability allows. I figure I’ll be around for a long time, since only the good die young, but I still use the treadmill religiously! And exercise-induced PH is a real thing.

    • #33881
      Jen Cueva
      Keymaster

      Hi @brendad53, I haven’t seen you in some time. Maybe you’re continuing your search for a diagnosis and answers. I had you on my mind and wanted to check in on you. How are you feeling now after you’ve had time to think about all of this?


      @mamabear007
      , have you heard from Brenda? How are you doing lately?

      • #33882
        V.R. Peterson
        Participant

        Yes, @jenc, I have the pleasure of visiting with Brenda on a regular basis. 😊

        I’m well. I haven’t been posting a lot because of some headaches. Saw my eye doctor a couple days ago and found out my eyes are getting old as fast as I am. It’s nothing some new glasses won’t fix. Should have them in about a week.

        • #33897
          Jen Cueva
          Keymaster

          Oh no, @mamabear007, I’m sorry about the headaches and eye problems you are experiencing. I am happy to hear that glasses should do the trick for you. Yeah, isn’t it crazy how our bodies think we are aging?

          Oh, I didn’t realize that you and Brenda visited as often. That’s such a cool and great support.

      • #33884
        Brenda Denzler
        Participant

        Hey, Jen. Yeah, it’s occurred to me, too, that I haven’t been around here much lately. I’ve been just kinda hangin’ in and hangin’ on. Felt a bit better for a while and thought maybe getting a new puppy had helped me by forcing me to be more active, which then made everything else better. However, this has not proven to be the case. While I love having a pup around, I am not getting better, and at times it’s bad because it’s hard to get enough rest with a puppy.

        I have an appointment at Brigham & Women’s, now, for September 9th, for the Level 3 CPET. The “stick a tube into her heart and have her ride a bicycle” test. I’m not looking forward to it. Having the catheterization while lying on a table made my heart skip beats and there was uncomfortable pressure, etc. I can’t imagine doing that while sitting up and pedaling a bike! But if it gives us some answers……

        I’m noticing that my O2 sats are fluttering downward. Now when I exert myself, my O2 isn’t going as high as it used to. It seems to be hovering around 92-93 upon exertion, which is not how it has been.

        And at night I’m having a lot more O2 drops, along with heart rate drops. For a long time, I had very few drops of O2 below 90%. But now it’s clear that I’m not breathing deeply enough, consistently enough when I sleep. And I sleep at a 30-degree angle! With a nasal strip to open up my sinuses. My 4% ODI (oxygen desaturation index — drop of O2 sat by at least 4% below baseline of 90) last night was 8.9 events per hour. At 3% ODI, it was 15 events per hour.

        My PCP ordered a sleep test, but no one has ever called about it. So I put a bug in his ear again today about getting it done. I’m not sure I have “sleep” apnea, because at times I feel like I have momentarily forgotten to breathe, and I’m wide awake. So we shall see what the tests show.

        How are you doing? And how is everyone else, here?

        When you had the Level 3 CPET, Jen, did having the cath in your heart at the time cause issues?

        • #33887
          Colleen Steele
          Keymaster

          @brendad53 it’s so valuable the way you monitor yourself. If you are not already, I encourage you to keep a notebook that you can share with your medical team. It might help them see patterns.

          So, what is the name of your puppy? What breed?

        • #33892
          Colleen Steele
          Keymaster

          Posting @brendad53 response for her.

          Wellllll, I gotta laugh. I recently told my shrink that I was certain physicians were unable to do jigsaw puzzles. He knew exactly what I meant, and just laughed. What I meant was that physicians don’t seem to be good at pattern detection. They tend to look at pinpoints of time, medically, rather than longer durations, and patterns don’t seem obvious to them. Or relevant. If what they see in the pinpoint moment doesn’t fit one of the diagnostic algorithms they learned in med school, they are uninterested.

          As a rule. In my experience.

          I have all kinds of data about how my BP, HR, weight, and eventually O2 sats, have changed over time. Like, the last 7-10 years. I felt like I needed to keep track of things so that I could try to figure out what was happening, because the doctors I was consulting to try to find out what was happening would run the tests relevant to their specialty, I would pass them with flying colors, and I would be patted on my pointed little head and sent home with the reassurance that I was fine.

          Meanwhile, I kept losing functional status. I started keeping the records, in the earliest days, to try to figure out whether I was just imagining that I was getting worse. I figured my subjective impression might be wrong, and I needed something more reliable. So I got a pulse oximeter (at a friend’s suggestion), a BP cuff (again, at a friend’s suggestion), and so on. Eventually I monitored what I ate, when I ate it…. All kinds of things, trying to figure out what caused ”it,” and what seemed to help ”it” and/or what kind of problem ”it” was and thus what kind of specialist I ought to consult. Only to consult them, have them take a ”snapshot” of what was happening at the moment I was in their office, run a test that I’d pass, and then send me home with an empty reassurance that I was really fine.

          So….. I do continue to keep records. In fact, it’s those old records that helped me put together a ”symptom chronology” for Dr. Ford. I have reason to believe that he might actually have read it, maybe?

          As for puppy, her name is Maggie and she is 100% Carolina mutt! Possibly part German shepherd. Probably a dollop of pittbull in her. Any dog that is a mutt in these parts almost inevitably has a bit of pitt in them. One person recently said they thought she had a big of boxer, which would be nice. I love boxers.

          She’s a handful. But we’re getting used to one another, and she is slowly learning that I get low-voiced and gruff when she pees in the house, but I sound happy and I praise her with a high, squeaky voice when she pees outside. We are…SLOWLY!…getting there.

        • #33893
          Colleen Steele
          Keymaster

          @brendad53 Good job keeping the notes and being self-aware. I have the feeling that Dr. Ford is the type of doctor who will read and consider what you share. Even if he doesn’t, keep it up. You never know when it might prove helpful.

          I bet Maggie is adorable! The puppy stage is hard but with your love and discipline I’m sure she will grow into a perfect furry friend.

        • #33904
          Brenda Denzler
          Participant

          Yeah. I do have hopes for Dr. Ford. He seems to be taking the symptoms very seriously, and for that I am grateful.

        • #33908
          Brenda Denzler
          Participant

          Seriously. I’ve been thinking about what you said, Colleen. I have a high level of mistrust and snark in me, when it comes to the medical world. But I will say that Dr. Ford has been hitting most of the right buttons, and I’m pretty impressed with him so far.

        • #33910
          Colleen Steele
          Keymaster

          @brendad53 for what it’s worth, I know from experience that there are many excellent doctors out there. I’m hoping you have finally found one.

        • #33898
          Jen Cueva
          Keymaster

          Hey there @brendad53, I’m happy that you have that test coming up soon, although I know how you feel about testing. I didn’t have any problems when I had it done; it was so long ago I would have to think hard about how long it took, etc. If anything comes to mind, I will let you know. It was done on my birthday one year, LOL.

          Congrats on the new pup. I love her name, Maggie- it makes me think of that old song Maggie Mae.

          I commend you for keeping track of your vitals, how you’re feeling, etc. You certainly have The Book of Brenda to present to all of the docs. Please take care, and please update us when you feel up to it. I’m sure that Maggie will keep you busy.

        • #33905
          Brenda Denzler
          Participant

          Maggie Mae — Rod Stewart…right?

          Maggie is short for Magnolia. 🙂

    • #33907
      Jen Cueva
      Keymaster

      LOL, yep, that’s the song I was referring to, @brendad53. – I love that Maggie is short for Magnolia, I love magnolias as my great-grandmother had two huge magnolia trees in her front yard when I was a child.

      I’m also happy to hear that Dr.Ford takes your symptoms seriously.

      • #33909
        Brenda Denzler
        Participant

        One of my old professors had a lovely, huge magnolia tree in her front yard. She sold her home, as she got too old to live there any longer, and the people who bought it cut the tree down! I was horrified.

      • #33911
        Colleen Steele
        Keymaster

        @jenc @brendad53 my mom’s name is Margaret but she has always preferred going by Maggie.

        “Maggie May” by Rod Stewart came out the year I was born. I’ve always loved that song.

        “Maggie Mae” is a song by the Beatles that I’m not real familiar with.

        • #33912
          Brenda Denzler
          Participant

          Ah! I haven’t known about the Beatles song. I’ll have to look it up. The “Mae” spelling is my mom’s middle name. Or ‘was’? She passed nearly 9 years ago. I’ve wondered if she’d be all that thrilled with having a dog named after her! 🙂

Viewing 18 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account