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Diagnosis Effort
Well, I did it. I got my medical information ready to send to the CTEPH clinic at UCSD and sent it off this afternoon. Overnight express. We shall lay to rest, once and for all, whether my PE(s) have caused any PH.
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23 Replies
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Woohoo, what a win this must be for you, @brendad53! I can see your dedication to gathering the necessary paperwork for the UCSD CTEPH clinic referral.
You’re not alone in this journey; we’re here with you, offering support and keeping you in our prayers.
How did it feel to send it off finally? Were you filled with excitement and anticipation, wondering about the what-ifs?
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Actually, Jen, I was anxious and nauseous the whole day. Fortunately, I had a supper date with two old friends yesterday evening, so that got my mind off of it and I began to feel better.
Glad I got it out of Carolina before the hurricane passes through. Get it quickly into the hands of the SD people. If the post office does its job, that is. I have found in the past that when I have paid for special handling, I haven’t gotten it. I hope this time is different. This time, part of what I paid for is a money-back guarantee that it would be delivered to SD before the end of today. I have a tracking number, so we shall see what happens!
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I bet, @brendad53! I think anyone who has had the challenges you’ve had through the years is only expected to feel a bit nauseous and anxious.
But I’m grateful that the dinner date was a huge help in distracting you for a bit! I LOVE that you had that planned.
I hear you about the mail and paying extra to get that care. But tracking and insurance are always great to have to give us a little more peace of mind. Then, once they have it at UCSD, you’ll chomp at the bit until you hear from them.
With the Labor Day weekend approaching, maybe you have plans that will distract you a bit longer until next week. Do you have any plans yet?
Hopefully, you aren’t getting too much bad weather from that storm in the Carolinas. Take care! I’m sending you love and hugs, my PHriend!
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No plans for the Labor Day weekend, Jen. Except work on my book manuscript and sleep. I hope your holiday weekend includes something fun and exciting — or as exciting as your lungs will allow! 🙂
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Hi @brendad53, Not too much planned, but sleep is on my agenda, with the beach, sunshine, and relaxation!
You are a determined woman and stay on track with your writing tasks. How do you do it so well with all on your plate? My focus and concentration make it challenging to stay on task. Before, I was always a routine and task-driven person.
Now. I have a huge task list and can’t stick to one and complete it before adding more. I need your best tips! Please share!
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I used to be 10 of the most organized, task-oriented people I knew. Then I met Maureen Tilley! Then I became only 5 of the most organized people I knew! Maureen passed a few years ago from pancreatic cancer…so I don’t know if I can legitimately try to re-claim my organized, task-driven title or not.
What I find in the long run is that I have to focus on small tasks, one after the other. And getting each one done represents an achievement for the day. For instance, I was overwhelmed at the thought of trying to self-publish my book, but I just read up on it a bit and then started moving, one step at a time. It’s almost done, now. Next big step will be uploading it to sales platforms. And then, after that, marketing. But…one step at a time.
If you want to write, maybe your achievement for Day 1 would be simply sitting down and writing down your thoughts about points you want to make in the essay/article/book.
The next day, you review that and ponder whether you have more stuff you’d like to say. Make a note of it. Think if there are any sentences you could write about any of the items you’ve listed. Just a few to give you a base for further words.
Day three, you review what you did the last two days, and consider the proper order in which all those items (and their associated sentences) ought to be presented to the reader. Mess around with how they might be reorganized. If you get the idea for a few more sentences to go with any of the items, jot them down in their appropriate places, too.
Day four, begin to think about that first section you’ve identified and think, what comes next? What do I need to write about, in here, to make the point in this section lead intelligently into what I want to say in the next section. If you can write full sentences about what you need to say, do it. (Editing comes a lot later. Just get the ideas down.) If you can only jot down phrases and notes, that’s fine.
But start to think about your writing as a chain with links. Each link in the chain needs to fit somewhat intelligently into the sections before and after it. But you don’t forge the whole chain at once. You create it link by link.
I’ve got my book manuscript in typeset form, now. I’m reading through it to make sure that nothing is grossly off, and I’m still making wording changes and edits to it. This makes my 12th set of revisions (each set getting smaller and smaller). It’s a long process.
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Wow, @brendad53! I need a mentor, I think, to get me back to some of my organizational skills. I feel like I was pretty darn organized until I had COVID. I wasn’t as organized as before my PH diagnosis, but I am much more than now.
But now, I can’t seem to get in gear. I thought maybe September was my month since it’s back-to-school time, and the kids, teachers, etc., are all back on a routine and most likely more organized than in their summer months.
But here we are, Day #5, and I’m not as organized, but I’m working towards it. Thanks for sharing the writing example since my goal is to write a book eventually.
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Wow, @brendad53! I need a mentor, I think, to get me back to some of my organizational skills. I feel like I was pretty darn organized until I had COVID. I wasn’t as organized as before my PH diagnosis, but I am much more than now.
But now, I can’t seem to get in gear. I thought maybe September was my month since it’s back-to-school time, and the kids, teachers, etc., are all back on a routine and most likely more organized than in their summer months.
But here we are, Day #5, and I’m not as organized, but I’m working towards it. Thanks for sharing the writing example since my goal is to write a book eventually.
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@brendad53, I’ll be virtually holding your hand until you hear back from them. Then, no matter what they tell you (and I’m confident they will have an answer for you), I’ll continue to hold your hand through your journey. 🤗
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Thanks. You’ve been very patient as I’ve mucked my way through all of this for the last 2 years. I appreciate it very, very much.
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@brendad53, I consider it an honor, as I’m sure @jenc and @colleensteele do. {{{hugs}}}
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Yes, it’s an honor, and we are also waiting impatiently for the next step. We got you, @brendad53. This is exciting and nerve-wracking at the same time, right? I am feeling it with you, just not as bad, I’m sure. <3
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I tracked the package. It got to UCSD first thing this morning. May be in their mailroom and take a day or two to get to the CTEPH program offices. But it’s all there, apparently.
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So glad you sent the package. Now that you know it’s there, don’t hesitate to follow up after you’ve given them that day or two.
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Yay- now it’s in their hands, and you should hopefully hear back shortly. I hope you celebrated once you knew it arrived safely, @brendad53.
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@brendad53 I’m with @mamabear007 and I know @jenc is too! We will continue to be here for you through the good, the bad, and the in-between. Thank you for the wisdom, humor and compassion that in return you have provided us and the forum members.
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You know, I find myself afraid that if you could meet me and see how I breathe and how I function, you wouldn’t think that I was “one of you.” You’d think that whatever this might be, it is certainly not nearly as severe a PH and/or CTEPH are, and I don’t really fit into this group.
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@brendad53, you only think we wouldn’t believe you weren’t “one of us” because your doctors have been buttheads. You DO have PH, as proven by a few of your RH caths.
However severe it is, you deserve to be taken seriously, whether by doctors or the wonderful members in these PHN forums. None of us would pass judgement on you, no matter how well you happened to be breathing and functioning the day any of us happened to meet you. Whether patient or caregiver, every single one of us realize that PH patients have good days and bad days, and I don’t believe any of us would judge you if you happened to be having one of your better days. In fact, I believe all of us would celebrate that you’d been fortunate enough to have a good day on the day of our meeting. I know I would. 💜
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Oh, my dear PHriend, @brendad53! You truly belong with us! No need for apologies! We’re all riding different waves of PH at various stages and with unique experiences. As fellow PH warriors, we’d love to celebrate your good days, just like @mamabear007 said!
We all understand the highs and lows that come with our PH journeys. It’s not about comparing the severity of someone’s situation or symptoms. PH is PH at any level, and managing it can be challenging, my dear PHriend. Together, we’ve got this!
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Thanks. I know I can rely on you folks.
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Brenda,
Congrats on getting all that info together and into the SD folks hands! I’ll be waiting, along with the others on this forum, to hear what the results are. And don’t worry about how people think of you, please. We’ve all been there. And I’ve ‘met’ you on the CTEPH support group Zoom sessions, and I never thought twice about how you were breathing! CTEPH is insidious. It makes you LOOK like you are just fine, and then clobbers you with a breathless spell and or fatigue that will lay you low. So til you get the results, savor your spoonfuls of energy and have a lovely Labor Day Weekend!
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Beautifully written, @tervo! I hope you and your sweet hubby enjoyed Labor Day weekend, my PH PHriend. Hugs to you both!
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Beautifully written, @tervo! I hope you and your sweet hubby enjoyed Labor Day weekend, my PH PHriend. Hugs to you both!
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