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What is on your medical calendar for October?
Will you be treated to no medical appointments in October, or does the month have tricks in the wind for you?
Share your schedule with us. We are here to support you through appointments, tests, procedures, and whatever you are about to tackle.
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21 Replies
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Thankfully, my October calendar is void of medical appts! I hope it stays that way, especially since there were 6 on the calendar for Sept. I finished the last week of Sept. with ortho to have cast removed from my left arm and at UVA for echo and cardiology follow-up. I do have a visit lined up at medical supply place for tomorrow to get fitted for the bipap. I do dread changing from cpap; I worry abt the increased pressures of the bipap.
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Hi, @DeLois Tweedy. I am so happy your October calendar is slowing down after a few busy months. I hope and pray this stays throughout the month. Wow, thank God you persevered through it all.
How did your fitting go with the BiPAP? I think it could feel better, but I hope to hear your feedback soon after you’ve tried it for a few nights.
I also came across this article that you and others may find helpful. Take care, my PHriend, and keep us posted. Hopefully, this will allow you to sleep better, therefore having more time for those grandkids! 💜
https://www.sleepapnea.org/cpap/cpap-vs-bipap/
sleepapnea.org
CPAP vs. BiPAP | SleepApnea.org
CPAP and BiPAP are both effective treatments for sleep apnea. Learn about their differences such as how they work, how much they cost, and when they’re used.
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@DeLois Tweedy yay! to no appointments this month! I hope the fitting goes well and they get it right the first time around.
I can understand your concern about switching from cpap to bipap. They switched my husband when he was hospitalized and he hated it! But keep in mind he was very sick too so dealing with that change on top of it all was too much for him. They eventually let me bring his cpap from home and let him use that because he was struggling too much with the bipap which was defeating it’s purpose.
I think if he was in better condition he would have tolerated it and given it more of a chance to help him.
Please let us know how it goes for you.
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Well, October will be quite busy: my last iron infusion this week, CK, SPEP, QIG + regular labs, HR CT of lungs, maybe new gastroenterologist for SIBO as nothing has worked, appointment with PCP and Rheumatologist. Doesn’t sound like a whole lot of fun – oh, and RSV shot.
Good news!!!! Sotatercept will be on the market March 26th!!! Also pharacutical company coming out with trials for trespostinal patch – also good news for those on subQ or IV. I am thinking to sign up for the trial if it comes ot right away then switch to the injection Sotatercept.
A great deal seems to be in the so I am not going tonget down about all the work for October.
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Hey there, my sweet PHriendw, @Carol Volckmann . Wow, what a busy month you have ahead! This month you better spoil yourself with a few treats, too.
I hate that you continue to striuggle with SIBO with no relief! That has to be so darn frustrating. Prayers and positive vibes that your busy month will be the month that you find some relief as you see this new Gastro.
Yes ma’am, the new treatments and advancements in our PH community is hopeful for the upcoming next few few years. I’m working on a column about this topic to be published this month. 💜🙏
Please don’t forget to come back and update us with your medical appointments this month. Let us know how we can best support you.
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Oh my goodness @Carol Volckmann you do have quite a full schedule this month! Geez, it sounds like what Cullen’s schedule was like for the first year post-transplant. Hopefully the good news will be the months following will be easier for you?
Anxious to hear about your participation in the trials. That is great and I wish you the best with it! And may all your upcoming results be good news.
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Gastro & pulmonary rechecks after hospital visit AND it’s time to request proclamations for PH Awareness Month.
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@Barbara Thompson how are you doing since your hospital stay? I hope things have been improving for you. I know you had some real challenges lately.
Ready, set…go! Get going on the PH awareness prep for November!
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Hi, @Barbara Thompson, how are you feeling this week? When do you go back for the checkups post-hospitalization?
Didn’t I also read recently of a huge milestone anniversary you celebrated, my dear PHriend? What are your best tips for married couples managing PH and life?
Yes, ma’am, you are on your way to get started for PH Awareness Month. It is here so darn fast this year!💜
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Thank you @jen for your support and positive vibes. I looked up the blood work all ordered by my Rheumatologist. Guess he is looking for other reasons aside from SIBO that is causing my bloating. I just want to be rid of it! Thank you again Jen, sweet friend 😊❤️.
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Hi there, @Carol Volckmann; I hope and pray this rheumatologist will find something that will offer answers and some relief! You’ve been struggling with this belly stuff for too long, my sweet PHriend.
Please keep us posted as you learn more. My heart and prayers are with you. Don’t forget to treat yourself and take breaks during such a busy medical month. 💜🤗
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This is just a test. I made an entry, twice, and it bounced. If this works I’ll try again.
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!0-4 @Randolph Reynolds, this time it worked. So, hopefully, you will not have any other trouble posting. We did switch to a new redesigned platform recently, and it seems to be working better for most people.
How are you this week? What’s on your medical calender for October?
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Okay, so I am posting this update for Randy, @Randolph Reynolds. He had some trouble posting. Hopefully, no one else is having tech issues with our new platform.
Randy shares, “Hi gang. I hate bipaps as well. Don’t need one but the last two times I was in a hospital I got smothered by one. Hard plastic mask over my nose and mouth actually hurt. I couldn’t wear my glasses to read. Thankfully I have a simple CPAP at home, Respromics, that is much more comfortable.
As for medical visits this month I have my usual INR check, a visit to the dermatologist, on-line visit with my PAH specialist, a dental cleaning, and annual eye exam. Usual stuff. Changed out my infusion site last week and pain level hasn’t as bad a usual. So rather boring.Chilly fall weather bores into me. I suppose being on my meds makes me susceptible to being cold natured”
Like you, I am a wimp when the air turns damp and cooler. My bones must be trying to remind me how old I am. Hehe. Thanks for sharing, Randy. Please let me or @Colleen know if you have any other trouble posting. Take care, buddy.
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@Randolph Reynolds that was my husband’s big complaint too, the hard plastic over the nose. Hopefully they can be better fitted and more comfortable for home use.
Good luck with all of your upcoming appointments and try to stay warm!
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Thanks for the posting, Jen.
pulmonaryhypertensionnews.com
What is on your medical calendar for October? - Upcoming Procedures - Pulmonary Hypertension News Forums
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It’s my pleasure, @Randolph Reynolds. Anytime you need help posting, Colleen and I are happy to help you. I hope you enjoy a relaxing weekend; stay warm. Do you use a heated blanket? I use mine all year because I am cold-natured, too, due to my anemia, I’m sure. That may be something to help you.
I also wanted to check on @tracey, @Jimi Mcintosh, and @Dawn, as you all have been on my mind recently. Please let us know when you feel up to it and how you are doing. We are here for y’all and miss your updates. 💜🤗
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Jen, thank you for the article you posted abt cpap/bipap. It was helpful. And thanks to all who posted regarding the bipap. Tonight will be night 5 of wearing it and I’ve had 4 nights of little sleep or rest. Maybe last night was a tad better. My biggest problem is because of the high pressure, my mask loses suction easily – wakes me up, requires adjusting, etc. Plan to call pulmonologist Monday for suggestions. I have a small mask and it appears there isn’t an extra small. Will continue to use, and will update progress.
Mixed news from my echo on Sept 28: compared to echo 6 months ago, my EF has improved from 55-60% to 60-65%.; mean gradient decreased from ~13 to ~9mmHg (which is not good); my pulm HTN artery pressure went from 73 to 61mmHg. I’ll take 2 out of 3….A good visit, discussed my valve disease, my options at this point,, my symptoms which I experience almost daily and PA called me next day after talking with my interventional cardiologist to discuss further.
Colleen, did Cullen’s PH cause his heart failure? It is believed that my heart failure came first and caused the PH. But who really knows. I had radiation treatments years ago, which affected my heart and lungs, especially my valves.
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Got/had 3 this month…….had 3 last month too. I have to go in and get a blood test every month for my cancer. Last month along with my blood I had 2 visits with my cardiologist. One for an echocardiogram and the other for the results. Yeah you must have PH and I don’t have much experience with it you need to go through your pulmonologist. I told him how he didn’t get a long with the PH doc in SD so he needed to do it. His eyes got real big…..think I scared him. I explained he can confer with the PH doc at UCSD with any questions and she will call all shots for my care. You just have to order the tests she wants and prescribe and meds she thinks I need. He did did call her and they got along well, so I think it will work out????
Along with my blood test this month my pulmonologist thinks I may have asthma. Had a cough and stuffed up head since April. Antibiotics don’t do any good. Got to do a blood test Friday to confirm it. Just what I need is some new chronic disease.LOL
I have the opposite problem as Brenda. I can’t get away from doctors……they are always coming up with something new and reasons for another appointment. Guess they think I am some kind of medical curiosity.
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Oh no, @Roger Bliss, it does sound like you have the opposite problem of Brenda. Hopefully, the blood test today will return soon, and they will offer you a better answer.
Geez, it certainly sounds like you scared your doctor. Stop doing that, Mr. Bliss! Hehe. But thankfully, they talked with the PH doc in SD and got along well. It sounds optimistic that things will work out with that.
You are going to have to do like I do sometimes. Tell them no appointments because they find a new diagnosis or add another medication! It becomes overwhelming, and we need a break at times.
Please keep us posted once you hear about the blood work and asthma diagnosis.
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Hey, y’all, I’m sharing this brief update for @Vanessa Vaile. She had trouble posting. But she says,”
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The short version is that NJH finally sent my files and slides to the UC Health Anschutz CTEPH program, and I should hear back from them by mid-November.
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PS that meeting to discuss never materialized — canceled and couldn’t be rescheduled
Vanessa, why did they not reschedule that meeting? Did that physician leave? Thanks for sharing. Please let us know when you hear back from the CTEPH center.How are you managing this Fall? How’s the weather up in CO been?
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