My issues ended up being from an infection inside my port. Every time I used it, I pushed that infection into my body and my immune system had to fight it off. It was a strain of pneumonia which is why I was having the symptoms I was having. I hope you get answers to why you're having similar issues!!

Interestingly enough, adenosine wasn't even FDA approved until 1989! So you definitely missed it by a while. I'll be very happy for others if they can come out of SVT episodes without adenosine, that was certainly a horrible experience. But it was effective for me. I guess I can't be too upset when I know it saved me!

Unfortunately there aren't may studies on this. For some people, their lives are incredibly short due to complication, for others, their life span isn't affected at all. It can vary dramatically based on comorbidities and complications. We've recently discovered that I have a mutation in my COL1A2 gene and I do not have hypermobile EDS unlike what we thought. My mutation is incredibly rare and there are definitely no studies about lifespan for my specific mutation.

I'm sure they were just trying to treat me as soon as possible, but it definitely wasn't a great experience. Unfortunately, I had no idea what has happening or what any of the medication was. Luckily that hasn't happened again and I am doing much better!

I’m glad you enjoyed!

Thank you so much! I love sharing my story so others can learn or feel less alone!

Of course!! I hope it all goes smoothly and you heal quickly! Let me know if you have any questions!!

Hi how you feeling now with the pain?

I actually have all of the dates written down, but keep in mind this was just my experience and my city’s hospital system!! So I had my appointment with my primary on March 2nd, that’s when she put in the referral. They called me in a week, on March 9th and we scheduled it for March 14th. It was less than two weeks from the referral to the day of surgery! I think a lot of vascular offices are super quick with it, but my doctor did tell me that it might take two weeks for them to call me. My vascular office called me while I was in class and asked how soon I needed it scheduled. If I had needed it immediately (like for immediate cancer treatment or likewise) they could have done it the next day (Friday the 10th), but they said it would be easier to wait until Monday. I had too many classes that day, so I asked for Tuesday! I believe they called me again the day before to go over surgery instructions! I hope this helps! I didn’t realise how fast the process was going to be for me, I’m not sure if it’s that way for everyone though. Let me know if you have any other questions!!

@@caimacler Ok- that would be nice if it would be the same for me. I was started on TPN on October 5th, 2023. I have a PICC line right now. It’s already my second one bc the first stopped working. Now the picc line I have is getting super positional again and wouldn’t pull blood at my last infusion appointment. My nurse has been encouraging me to ask my doctor about a port. And at this point I am worried my current PICC isn’t going to last much longer. I can tell it’s hard to push saline and won’t pull blood most of the time when I flush it. My appointment with my PCP is this coming Tuesday. I am really nervous about asking about it. I’m not sure how long I am going to be on TPN but I’m sure it’s going to be months longer until anything can permanently be fixed. I also receive IVIG every month and will be for the rest of my life. So that would be another good reason to have one. Thank you so much for the information and your video of your experience. As I said- I really hope mine experience works out similarly and quickly. But first I’ve have to get my doctor to agree with it.. I’m not very good at advocating for myself.

@@caimacler also kinda worried about timing bc I think at my hospital they might use general surgery team for ports.. and I would assume that may extend things. However if I am having issue with my PICC then some kind of intervention will need to happen sooner rather than later bc they say you shouldn’t keep a PICC that won’t pull blood if your treatment will be for longer than a week or two.

That sounds like a really awful situation to be in. I hope everything has been working out for you! You’ll have to let me know how it goes/went!!

Glad you enjoyed it!!!

The joint pain is definitely so bad!!! Icy hot patches can be a fav if my skin is tolerating them or creams if not. I definitely love heat, so my favourite ways to work with joint pain is heat therapy. I have a massive electric blanket I keep on my bed, I love baths when my POTs isn’t too bad, I’ve got all kinds of smaller heat pads and things like that!! I know a lot of people do better with ice, so try both and see if they help with anything!! If it’s a really bad joint pain day, I wrap it up with either braces or tape and rest it. In the long term, gentle stretching and strength building can help a lot, but only with doctor approval. I see a PT regularly and it helps a lot, I suggest looking for one who knows hypermobility or chronic pain if they don’t have hypermobility. I don’t know if any of that’s helpful, but like I said, heat is definitely my favourite thing. I’m just a little lizard lol. It just takes some trial and error to figure out what works best!

I’m so glad I could be of some help! I’m sorry you’re going through all this, I know just how hard it can all be to start adjusting, but I promise that eventually it will all feel so much easier to manage. You’re never alone in this and feel free to reach out if you ever have any questions or anything!!!

Somehow I feel like EDS and Disney are a combination that are simply meant to be lol! I do love my Walker so much though, especially at places like Disney!! Truly a game changer

YES!!! A lot of my friends are still students and it was so strange when they started classes and I saw all the buses everywhere I just didn’t go

I am doing very well now! I think I still need to upload my my recent update video, but I have almost no pain left, complete range of motion, and so much strength in my arm! Recovery went well and I’m really grateful for this surgery!

Broken bones truly are the worst, luckily that was the worst part about this surgery and I’m healing very well now!!

Awww thank you!! I try to stay as upbeat as I can! Gastroparesis and POTs really do suck and I hate that any of us have to deal with it. While getting sick young hasn’t been ideal, I’m luckily that at least my body is young and I feel like that’s made dealing with illnesses a little bit easier!

We all definitely have different things we can tolerate and all of our diets look differently. I am definitely not a nutritionist or doctor or anything like that, and I’m just sharing what works for me! You’ll have to let me know how you modified fried rice for yourself? Can you do tofu or chicken with it for protein at all?

Thank you so much!!!!🤍🤍

Hi Anna! I think three weeks should be okay! I obviously can’t guarantee anything or make any promises, and I’m not your surgeon or doctor. But for me personally, I was out of a cast and into a splint in I think a little over two weeks. Once I was in the splint, it was much easier to do things. I could still type with one hand and use my mouse with my non dominated hand. I would suggest practicing or trying to type and work from your computer with hand to see how it goes now! But after two weeks, I was comfortable typing with both hands! Just make sure your professors know so you don’t have to hand write very much, that was what was hardest for me! I would also warn you to make sure you have winter shirts with wide enough sleeves to fit a cast through! Since my surgery was in the summer, I could wear loose tank tops and it wasn’t a big issue, but I know long sleeves are harder to wear with casts. I hope it all goes well though!! Let me know if you have any other questions!!!!!

Haha that’s great! I love that we all have some weird name for those weird pillows

I am doing much better from surgery! It’s definitely been an interesting summer, but I’m doing well!!

@@caimacler ur Soo brave, I saw ur svt attack video. Even thou your hear rate was extremely you seemed calm when I have 140+ heat rate, I start having extremely bad anxiety attacks. But honestly your brave one

@@caimaclerdo the Heart Beat ASMR like Erica Diebold

I grew up learning British English in Europe, but I’ve never actually been to Ireland! Interesting to hear though!!

It really is such a strange experience! I’m so sorry they have it to you three times and it still didn’t work. I had an ablation too and haven’t had any issues since!! I’m glad we’re both doing better!

@caimacler540 I was wondering about that. The ablation is a game changer. I'm glad you got it done, it makes a huge difference in quality of life. I used to think I suffered from anxiety, but it was the SVT that was the root cause of the anxiety. Have had an anxiety attack since the ablation 3 years ago.

I’m glad to hear! I’m so thankful for my ablation!

I’m so sorry to hear that!

Why

I’ve definitely thought about looking into getting a custom wheelchair, but unfortunately I currently live in a historic city with very little accessibility. I’ll have to look into it though, I’m sure even in my city one would be helpful. What was the process like for getting your electric wheelchair? As for disability, I’ve been lucky enough to have gone to an amazing college and I just graduated with a degree in writing! I’m hoping I’ll have a new job soon, one that’s accommodating. Of course if I struggle with getting a job that’s actually accommodating, my doctor has been very supportive of signing paperwork for disability pay, but we both think it would be better for me to look into getting a job first. Luckily writing is a super accessible career, for the most part!!

I feel the same way!! And it's so hard to find safe foods that are easy to cook!! I just wish eating wasn't so scary for us!

The unicorn is definitely my fav

I had a cardiac ablation that worked for my SVT, I have a video on it if you're curious!

I can only imagine how hard that is, I'm so sorry!

Thank you so much! I'm so excited!!!!