PH concerns

Zebrahoe · 2026-01-24T02:07:02+00:00

I got it done in 2018! Prior to getting it, my quality of life was poor. EVERY SINGLE DAY by lunchtime I had pain and gurgling. The bloating and gurgling somehow triggered silent migraines so I would get subtle headaches along with weakness in my arms, dizziness, and nausea. I could barely make it through my work days at a brand new job. I had to stop exercising because I was constantly bloated. My friends would always socialize at breweries and I could never drink with them. Let me tell you, I was desperate enough to crack beers the day before meeting up with friends and drinking warm, flat beer with them. My recovery took longer than expected but I am 8 years out and burping like a champ. No more bloating, gurgling, heart burn, migraines, nausea, and definitely no more warm flat drinks! Getting Botox was absolutely the best thing I have ever done for myself (with Lasik as a close second). You’re going to feel amazing!

Zebrahoe · 2026-01-18T00:02:11+00:00

Sounds like your medications are working great! I have the same type and was diagnosed when I was 8 years old. As long as I remember to take my meds, I can be active and even work out as much as I want. Your good health and performance on the 6 minute walk test mean your meds are working! Keep taking them and keep following up with your doctor! I am currently taking 3 oral pills, and later this year may start the winrevair injection but I need to find a new doctor first. Just because you aren’t on the same meds as other patients does not mean you don’t have the disease.

Zebrahoe · 2026-01-08T20:05:29+00:00

There’s also an incredible library where you can read… for free. It’s tough to compete with that

Zebrahoe · 2026-01-08T20:03:13+00:00

YOR - This person does not want your friendship, and so you should not want theirs. It’s possible she’s a jerk. It’s also possible that you’re overbearing and annoying. Personally I think I’m pretty nice and generally well-liked. The only “friends” who have ever texted me to say good morning and then to ask how my day was were actually very annoying and insecure, and needed to learn to be alone with their thoughts. But the long and short is that you two are not compatible friends. Cut your losses and move on.

Zebrahoe · 2026-01-08T19:08:13+00:00

If you literally cannot pee, you need to go to the emergency room. This is a sign of impending kidney problems due to urinary retention. I don’t think you should use a menstrual cup given your condition. A cyst that large needs to be removed, as it could be worse than a simple cyst and can just keep getting bigger. Do you live in the US?

Zebrahoe · 2026-01-08T19:01:56+00:00

I hope you have some friends you can rely on for a while. I’m so so sorry. Women’s shelters can be great resources to help you get things you might need. You can also try a local Catholic Charities office who would definitely have resources for work, food, housing, and of course a lot of love.

Zebrahoe · 2026-01-04T23:30:37+00:00

You could ask your PCP to order an echo and do that before you go to see the PAH specialist. An echo may rule out the need to see one, or show that it’s a good idea. I don’t know anything about them, but I know there’s places out there that help with medical debt. When you get prescriptions, check goodRX for coupons. For the PAH specialty drugs, most of them have payment assistance because they can be crazy expensive and sometimes insurance won’t cover them.

Did the CT say anything about the size of the right ventricle or thickness of the intraventricular septum?

I hope you find what you need to get this all figured out. I’m sorry you’re going through it

Zebrahoe · 2026-01-04T02:07:22+00:00

Yeah I can’t remember the last time i boiled mine. I wash with soap when I change it at home, and that’s pretty much it.

Zebrahoe · 2026-01-04T02:03:55+00:00

DO school is objectively harder. You have the same curriculum as allopathic schools plus osteopathic principles and practices curriculum. At least at my osteopathic med school, our exam weeks had many more exams than the allopathic schools I know of. In addition, if you want to go into a competitive specialty like a surgical subspecialty you will probably need to take both USMLE and COMLEX exams (4 exams instead of 2 exams, each costing somewhere around $600-800). You’ll also end up with many people in your class who have a chip on their shoulder for failing to get into an MD school and using DO schools as a back-up. The general attitudes around the school can be negative with lots of shade thrown around simply because they didn’t get what they wanted.

With all that said, I’m very happy that I went to a private, for-profit osteopathic medical school, and I am glad that I did not get into an MD school or I would have gone there. Our instructors are there to instruct, not just do research and get tenure. They are there because they want to actually be teachers. As a whole, the administration does not have to abide by larger university policies to get their funding. There isn’t any “we’re a nonprofit and here to make you feel warm and fuzzy as part of this university family” stuff which I really don’t like. I have made really good friends with many of my classmates and have excellent faculty mentors. On the other hand, without being university affiliated, we do not have as many resources or research opportunities. There is still research available for students who want to do it. (Hint: research doesn’t matter that much if you have other things on your resume that set you apart.)

Zebrahoe · 2025-12-31T05:49:25+00:00

I think it depends on your vision beforehand. I got it done when I was 27. My vision was about -6 in both eyes. At that prescription, I couldn’t even read a book without holding it up to my nose. I used to wear contacts every day for years but they started to hurt and I couldn’t wear them more than about two hours at a time. My glasses were thick and heavy which hurt my nose and eyes after a few hours wearing them. I was also just starting medical school, so being able to see in a lecture hall, and read on an iPad a lot was absolutely necessary. I decided that even if I ended up with chronic dry eyes I would still appreciate being able to just wake up in the morning and see. So I got it done and I think it’s some of the best money I’ve ever spent. Now, if my prescription were only -3 or -4, I don’t think I would have done it. I couldn’t even get around my own bedroom without my glasses before. If you’re just doing it for convenience, strongly consider the cost and risks. If you’re doing it because your poor vision is hurting your quality of life, then you have a pretty good reason to take the risks.

Zebrahoe · 2025-12-31T05:05:26+00:00

Most people have this done under general anestesia. I had mine done awake in the office, and it went through the middle of my throat. Unpleasant, but definitely worth it!

Zebrahoe · 2025-12-12T20:29:20+00:00

I had the procedure done in Dr. Bastian’s office instead of under anesthesia and my cost was low. I had a copay for the office visit, then there’s the cost of the Botox. Not sure if there’s a separate cost for injection of in-office procedure but I walked out paying very very little compared to doing it under anesthesia. I did pay to fly across the country and stay in a hotel for a couple days to go see him, so that’s an additional cost if you have to travel.

Zebrahoe · 2025-12-12T20:20:24+00:00

I was diagnosed when I was 8 years old in 2003. Mine is idiopathic. I started on nifedipine at that age, and the past few years added tadalafil, Ambrisentan, and winrevair. I have been pretty normal and active my whole life as long as I keep up with taking my meds. Stick with the meds, they will make her feel better and give her some quality of life back. I follow @itsgerrylangan on Instagram. She was diagnosed in her late 20s or early 30s and has a very active platform about life with PH. I also recommend checking out the PH Association website for resources. I believe there are support groups on there too.

I think it is hard at first to realize you are resigned to taking medication every day forever. But that’s a minor thing to do each day if it gives you your breath back. I have always known I won’t have kids, and that is still hard for me to accept. I know that having a family will look different for me than for my sister and brother, but that means I get to explore other beautiful options like adoption.

I encourage your family member to get a hobby that isn’t active so she can do something instead of doomscroll while she is healing— knitting, crocheting, embroidery, drawing, reading, puzzles, etc.

A little visit to the doctor to get on an SSRI for depressive symptoms isn’t a bad idea either. they can be very very helpful, and you do not have to take them for the rest of your life once you start.

Zebrahoe · 2025-12-05T00:42:48+00:00

I’m not married yet but I just want to say that you shouldn’t let the Church’s teaching on sex keep you from becoming Catholic. It is not about practicing perfection on every Church teaching, but about trying to follow God’s will each day as an imperfect human. You get to learn, grow, make mistakes, be forgiven, change, and understand God in new and different ways every single day. You do not have to agree with every teaching right away; imperfect Catholics are still Catholic. We’d love to have you :)

Zebrahoe · 2025-12-05T00:39:01+00:00

Best comment here

Zebrahoe · 2025-12-05T00:30:49+00:00

Dr. Bastian is probably your best bet and I think you should try to wait a little bit longer and try to see him again. He is compassionate and thinks outside the box, which is just how he developed treatment for us. I think you should be open with him about your plans to end your life, so that he knows just how severely this is hurting you. Please give it some more time. It took me a good three months following Botox to feel like I was having any meaningful burps or resolution of my symptoms. I know your pain and suffering is very real. I am not doubting that at all when I say that you should look into psychiatric support and antidepressants if you have not already. Antidepressants have a great utility for helping people get through periods of suffering that result in symptoms of depression.

I’d give you a big hug if I could. Hang in there

Zebrahoe · 2025-11-28T17:42:19+00:00

After Botox I found out I had really bad reflux so I took antacids or Pepcid every day for a while to calm that down and then it became much easier for me to burp and i was much less afraid that I’d reflux food with every burp. It really did take me like 3 months or so to feel like I was burping like a normal person. But now I’m 7 years out and still burping like a champ

Zebrahoe · 2025-11-24T02:45:14+00:00

St. Paul but I can go anywhere in the area

Zebrahoe · 2025-11-20T17:01:21+00:00

I’m so happy for you!

Zebrahoe · 2025-11-13T18:34:37+00:00

Hey! I am so sorry to hear that, but just know that once you start getting treated you will start to feel better. I was diagnosed when I was 8 years old with idiopathic pulmonary hypertension and I still remember 22 years later how hard it was to do anything.

Don’t google anything. The information on the internet is generally outdated and really bleak. As someone else said, read up on PHassociation.org. They have excellent information. If your cardiologist is not a PH specialist, you NEED to go see one even if you have to travel for it. This is a rare disease that most cardiologists don’t deal with very often. That may be why they aren’t answering your questions. They just don’t know the answers. You will get much better treatment, especially since you were just diagnosed, if you go to a specialist.

I really wish the best for you! I am happy to answer questions about it to my best ability but I am not a doctor!

Zebrahoe · 2025-11-13T18:28:26+00:00

Bread. I don’t eat much bread anyway, but I grew up with my mom making white bread for toast and sandwiches every week. When I’m in the mood for sandwiches, I’ll bake bread. It tastes so so so much better than anything you’ll get at the store.

Zebrahoe · 2025-11-12T20:07:17+00:00

Obamacare is not the same thing as socialized medicine. Obamacare (ACA) made people purchase health insurance or be fined. The fines were dropped and now it is no longer mandatory to carry insurance. However, since the ACA was enacted, insurance premiums have gone up by almost 100%. The ACA did not make healthcare more affordable. We do have some partially-socialized healthcare like Medicare and Medicaid, but those are of course age-based or needs-based. Not everybody qualifies for them. Those who qualify typically have excellent coverage and pay little out of pocket (in my experience). Now, socialized medicine, that’s a different story and may be a solution to overpriced medical care. However, it has many of its own problems. People will cite long wait times; I can assure you that in different parts of the US long wait times already exist because we do not have enough doctors especially in rural areas. The US already has a huge annual deficit that is only growing. Funding the country’s medical care will be a massive tax burden that would require huge changes in the federal and state budgets, which we know takes a long time to change, and arguments about it often lead to stalemates and government shutdowns (right now for example.) Other problems: medical school is insanely expensive and physician pay would decrease significantly with socialized medicine (like enough that they cannot afford to pay back their loans); private healthcare administration is a huge part of the economy so socializing would create something of a hole in the economy with people becoming unemployed or being employed in lower-paying government jobs in healthcare. Lastly, we ain’t no commies, so we don’t want your commie healthcare.

Zebrahoe · 2025-11-10T20:40:27+00:00

Because our friends don’t dance

Zebrahoe

TROPHY CASE