Clinical Trials and GI Woes and Moving Oh My!

So much has happened in the past month for me health-wise. My Pride Month posts were not as frequent as I had planned, since my health did not corporate this month. I had a lot of ideas for posts for Pride month that I still want to do, they just obviously won’t actually go up in June.

I started taking Corlanor again for my POTS and IST, and this time I didn’t have a bad reaction! I’ve taken it for a month, and haven’t seen any improvement but I’m still hoping I will soon. I’ve been exercising about 3 times per week, which is good! It does take up all of my energy though so on days I work-out I’m not able to do much else besides that which is annoying. My POTS symptoms have only gotten worse since I started making all of the changes they suggested at Mayo, which is really frustrating. At this point I can’t be out of my house for more than one hour before my body starts shutting down. That time is even less if I have to stand or walk a lot, or if I’ve had chores to do around the house.

My GI tract is a bit of a long story. My GI started me on a muscle relaxer for the PFD which seemed to relieve some of the constipation, although I was continuing to feel worse. I had an x-ray done of my abdomen and my entire colon was full of excess stool, so things were not in fact getting better. First they had me drink mag citrate to try and clear it out, but it only cleared a little bit of it. Then I drank colonoscopy prep, which I thought worked for a few days, but it didn’t. My gastroparesis was not a fan of me drinking the prep, because it was a large quantity and you had to drink it quickly, This resulted in me continuously throwing it up every time I drank another glass.

My Gastroenterologist is trying to figure out a long term solution for the constipation since nothing seems to work. He thinks that Dysautonomia is causing me to have really bad intestinal dysmotility. I’ve been WAY more constipated than this many times, but I didn’t have any imaging done so I have no idea how far the stool was backed up then.  I’m so distended I can’t wear jeans or anything without an elastic waistband, and I look a solid five months pregnant. I’m currently drinking more mag citrate in hopes it will work this time, so cross your fingers for me!

In June I started a clinical trial for a gastroparesis medication. It was a double-blind trial that used 50% placebo patients and 50% drug patients. Obviously I can’t know for sure, but I think I may have received placebo because I only became more symptomatic while on the medication. The intestinal issues probably played a role in that too though. The experience has been really interesting, even if it wasn’t helpful for me. It’s still really cool to be contributing to science that could benefit me and others with gastroparesis in the future. I’ve also learned a lot about clinical trials, which will be good to know if I ever participate in another one!

On a more personal and not medical note, we’re moving! I talked about us looking for a new house well over a year ago, but the timing ended up not working out. However, we finally found a house we really like in the city over from us, which is about 30 minutes away. We closed on the new house on the 26th of June, and we put our house on the market on the 22nd. There’s already a contract on our current house so we’re hoping it will sell and close on July 24th. I’m really excited about the move, and feel like the change will be good for me. It’s not far at all from where we are now and I’ll still go to the same college so that’s definitely a plus!

I started an online summer course at the beginning of June and it ends in less than a week. I was nervous that with my health being so poor right now that I wouldn’t be able to do it, but the class has been really easy and the work load is super light. I’m taking Spanish 1 and since I took two years of Spanish in high school it’s been more of a refresher. It feels really good to be able to succeed at something after my bad Spring semester and withdrawing.

Things have been really tough for the last few months. Some days I start to feel like I’m hitting my breaking point. I try not to think about everything too much, but when you spend most of your time alone it’s hard not to think. I’m really trying to stay hopeful that things will improve soon. I hope you all are doing well! What have you been up to lately?

– Alyssa

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Life Update: Withdrawing from College

This semester has been incredibly rough for me.

Some of it I have shared with you, like documenting my journey at the Mayo Clinic, but there’s been a lot going on that I haven’t talked about yet. My health has been very poor since around the last few weeks of Fall Semester, and has been continuously getting worse. This was one of the major reasons I chose to go to Mayo in the middle of Spring semester. Unfortunately I missed a lot of class before my trip, and then a whole week for the trip (my first trip was during spring-break so I didn’t miss any class for that). While I was successful in obtaining multiple diagnoses, the treatment options are very limited.

As of right now, they are mainly focusing on the lifestyle changes; things like exercise, following the gastroparesis diet, and eating tons of salt. These things may or may not work, and if they do work it’s going to be months before I see any improvement. Since returning from my trip, I’ve only become more symptomatic and much less functional. I’m honestly not sure what to do right now, since I know if I contact the Mayo doctors they will probably tell me to just keep trying to do these things since it hasn’t been long enough to see results, but at the same time my body is incredibly weak and doing simple life tasks can be very difficult.

Missing this much school has seriously affected my grades. Some of my professors have been great, and others have been awful. I have disability services, but they aren’t very helpful and professors have found loop holes that essentially disregard any accommodations I’m supposed to have. It’s crazy how little legal protection disabled people have, but that’s a whole nother can of worms. I made the decision to withdraw from college, since my Spring semester grades were going to tank my GPA. I really wanted to only withdraw from the two classes I was doing poorly in, and stay in the two classes that I had nearly perfect grades in, but that isn’t an option at my college.

This also means I will not be able to transfer to a University in the Fall. I won’t have nearly enough hours after I lose these 14. Now, I’m going to have to do at least one more semester at community college, maybe two. I’m trying my best to remind myself that I’m only 18, so I’m actually ahead of my peers by at least one college semester, but withdrawing makes me feel so behind. There’s a lot of emotions to process, and I’m doing my best not to fall into a pit of despair, but it’s been really tough. I think hope and positivity are important when it comes to living as a chronically ill person, but I also think it’s okay to recognize that some situations just suck.

I’m planing to return to college in Fall, or even take a Summer class if I’m able to get my health under control enough. As difficult as this decision is, I know it is the right one. This is not the first time I’ve had to withdraw from school, as many of you know, I started this blog right after I withdrew from high school in November of 2016. It’s crazy to think that almost 18 months later I’m having to do the exact same thing. I’ve got to say it doesn’t hurt any less the second time around, but I know from the first time that it will get better.

Mayo Clinic Days 3-6

Day three was pretty simple. The only appointment I had was to see the electrophysiologist. Essentially they confirmed what I have believed to be true for the past two years. They think I have dysautonomia and postural orthostatic tachycardia syndrome, and had me do autonomic testing to confirm the diagnosis. I do not yet have those results, but from the numbers I saw during the test, I think it’s going to be confirmed. Since this is an autonomic issue, they’ve referred me to an autonomic neurologist. Unfortunately we couldn’t get into see her this week, so we will be returning to Mayo later next week. They reiterated to me how difficult it is to treat dysautonomia, and how since I’ve failed every medication used to treat POTS already, there isn’t much they can do. It’s incredibly discouraging, but not surprising. My electrophysiologist here in Texas wanted me to have a complete ablation of the sinus node, but given the statistics they quoted me, it definitely isn’t on the table right now, since it has a greater possibility of making me worse or doing nothing at all than helping.

On Thursday, I began my GI transit test, which is basically a gastric emptying scan only they look at the whole GI tract. I had to eat a breakfast of two eggs, a pice of toast, and a glass of milk in ten minutes, which made me really sick. Then for lunch I had to eat a sandwich made with butter, mayonnaise, 5 ounces of turkey lunch meat, with a whole bottle of water and a container of jello all in 30 minutes. I ate as much as I could, but I had to stop when I started violently retching, because throwing up could have altered the scan. Friday morning I had more x-rays to do for the scan, and then I had my autonomic testing done.

Friday afternoon, I had my follow up with the gastroenterologist, and frankly its been hard to digest (no pun intended) the news he gave me. Essentially I have gastroparesis and pelvic floor dysfunction, neither of which was I expecting, let alone two separate GI diagnoses. Gastroparesis is also something that is not easy to fix, and knowing how severe it can get for some people really scares me. At this point mine has progressed to moderate (out of mild, moderate, severe) and they’ve recommended I eat mainly pureed and soft foods. Following a gastroparesis diet is going to be a complete 180 for me, since the main things I eat are fruits, vegetables, and brown rice and I’m no longer supposed to eat any of those. As for the pelvic floor dysfunction, I’m not emotionally ready to try and treat that yet. It involves very invasive physical therapy, that I do not feel is necessary, and I definitely want a second opinion about before I do something so drastic.

The cardiologist thinks I also have fibromyalgia, and the GI suspects endometriosis. When I go back next week I’m seeing a gynecologist for the first time, and also the fibromyalgia clinic, as well as a dietitian to learn more about how I should change my diet. This has all been incredibly overwhelming, but I finally have some answers after six hard years of looking. I’m going to try and go back to school on Monday, but I honestly can’t even imagine going right now. I feel as if I’ve been living in an alternate universe, and being thrown back into daily life feels so odd. Even though I was only gone for one week, I feel like I’ve been gone for a solid month, but as I’m writing this I’m curled up in my own bed with my cat, and some level of normalcy feels restored. I apologize for being MIA, and a lot less active on here for the past two months, I hope you can see a lot has been going on in my life! I will continue to keep y’all updated through my Mayo Clinic experience when I travel back next week.

So I Guess I’m Going to Mayo Clinic?

On February 22nd, I had an appointment with my electrophysiologist, and in the end we decided I am going to go Mayo clinic. Instead of spending my first spring break of college somewhere on a beach, I’ll be in Minnesota going to doctor’s appointments. Somehow that doesn’t sound as fun.

I’ve talked about my Inappropriate Sinus Tachycardia before, and how my electrophysiologist believes I should have a surgery to try and correct it. I am currently on the last medication available for IST, and it has failed. My IST is much more severe than most people’s, and my doctor believes my only option is to have a complete ablation of the sinus node (aka they want to burn the shit out of my heart). This will most likely leave me with a pacemaker. At this point I’m not super convinced I want to have the surgery. For a long time now I’ve thought that I may have other autonomic issues on top of IST, and from what I’ve read if that is true this surgery could actually make it worse. This is also a very controversial procedure, and only two places in the country perform more than a handful per year, one of them being Mayo Clinic.

Back in October of 2016, I applied to be seen by Mayo Clinic physicians, and was rejected. They didn’t give an explanation so I have no idea why that was. I’m glad I’m going to be able to go, because to be honest the past three week have been really bad. I started to decline around 10 weeks ago, but it’s gotten increasingly worse in the past three. I’ve been missing quite a bit of school, and I haven’t been able to function at all. This has been a major leap backwards. My last round of quizzes did not go well, and I have two exams as well as a lab practical next week over information I was not there to learn. I am so incredibly frustrated and very sad. I’ve been here so many times before, but it doesn’t get any easier.

I worked really hard last semester and I did incredibly well in all of my classes. My health was pretty good, until the end of the semester, which was a huge blessing. Unfortunately this semester started off bad, and has only gotten worse. It’s so hard to constantly give your all in school, and not reap the benefits because your health sabotages you. Not to mention none of my professors ever respond to my emails, so I have no way of catching up while I’m gone. When I do try and study, I’m not retaining any of the information and can’t concentrate due to brain fog. I feel stuck and powerless.

I am really grateful that I’ve been accepted by Mayo Clinic, and that I got an appointment pretty fast. I’m hoping I’ll be able to see gastroenterology and maybe immunology while I’m there, but I haven’t heard anything from those departments yet. I’m also nervous to go, since I have always felt that if Mayo can’t figure all of this out, no one will be able to. I’m trying to stay hopeful, and positive that we may have some more answers sooner rather than later. I hope you are all doing well!

It’s Been a Minute: Life Update

It’s been a little while since I talked about what’s going on in my life, so I thought I would catch you all up!

First, I got the results back from my endoscopy and they were inconclusive. I had elevated mast cells in my biopsies, but they weren’t nearly high enough to diagnose mastocytosis. I had a serum tryptase test done to see if I had any elevated levels there, and it came back normal. It looks like I probably don’t have systemic mastocytosis, but my gastroenterologist is referring me to a new allergist/immunologist, who I have an appointment with on the 16th. Having negative results for tests is a good thing, because you don’t want anything to be wrong with your body, but it is also incredibly discouraging when it was the only new idea a doctor had in a long time. Since, I looks like I don’t have any mast cell issues, the gastroenterologist diagnosed me with post-infectious IBS.

I continued to have trouble with exhaustion due to my IST, so the electrophysiologist upped by digoxin dose. It had been working really well, but the past couple of days I’ve been exhausted and have felt my heart racing. It’s hard to know if the medication is no longer working or if I’m just having a rough few days.  I have an appointment on the 22nd with him, so we’ll see what he says. The gastroenterologist put me on Linzess for my IBS, and it hasn’t worked. It’s supposed to help with chronic constipation, but instead it’s making me have no bowel movement for two to three days, and then diarrhea. I stopped taking it, and became incredibly constipated immediately. Luckily, I see him on the 8th so hopefully he has some ideas on how we can get my digestion under control.

With school starting back on the 16th, and three doctors appointments in January, this is going to be a pretty busy month for me. I’m also starting to volunteer at a nursing home this Friday, which I am excited about. I feel ready to go back to school, mainly because I’ve been bored. I really hate feeling unproductive, but having the time to relax is nice, and something I try to take advantage of. I hope you all are doing well, and enjoying the new year so far!

Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!

Life Update: June

I feel like it’s been a while since I updated ya’ll on my personal life!

Overall things are going pretty well. Health wise I was feeling really good for a while, but now I’m just feeling okay. I’m having more headaches than I was, and my stomach is acting up, but overall I’m still doing better than normal. I had an appointment with an endocrinologist which was a waste of time, but other than that I haven’t seen any other doctors. I’m probably going to find a new gastroenterologist since that seems to be my main problem currently, and the one I was seeing said he couldn’t do anything more for me back in the fall of 2016. Ultimately I probably need to go to Mayo Clinic, but we haven’t started to try and apply since I’ve been out of a flare for a while. Having a few good months during spring/summer isn’t abnormal for me though, and it usually ends with intense pain and a hospitalization in the Fall. Yipee!

I got my GED in May and this past week I was admitted to my local community college. Yesterday I took the TSI, and luckily I don’t have to do any remedial courses, so that’s nice. I also visited with an academic advisor and started the process of getting disability services. Things are looking up as far as that goes!

The one major thing I need to do now is get my driver’s license. I have an appointment for June 28th, and I’m terrified. I took the driving test once and it didn’t go well. The woman who administered the test and angry when she got in my car and snapped at me repeatedly, then she failed me. Honestly I know I made some mistakes and shouldn’t have gotten a perfect score, but failing seemed a little ridiculous. That was almost a year and a half ago so it’s time to try again. She really got in my head and made me scared to drive, but I’m trying to be positive and confident because I know I can do it.

It may sound silly to some people who have gone through the process of getting a license, but it’s been incredibly stressful for me. I’m comfortable with driving now, the only problem is the dreaded parallel parking. Ironically that’s the part I passed the first time. I know some states don’t do the parallel parking, but my parents told me moving across the country wasn’t an option, so I guess for now I’ll just keep practicing. There’s a lot riding on this since I can’t to go college if I can’t drive, but I have faith that I’ll pass (or at least I’m trying to pretend I do :)).

I helped my sister move out of her college apartment, look for a new apartment by her new job, and then into her new apartment. She had her graduation ceremony mid-May and we threw her a family party at the air-bnb we rented. It was really nice, but I’m sad that she’s now living four hours away from us, and won’t be forced to see us for a month over Holiday break. She’s very family oriented so I know she’ll visit and we’ll visit her, but I also know it won’t be as often as it used to be.

That’s pretty much it as far as my life’s concerned. How are you doing? Do you have any fun Summer plans?