Surprisingly Empowering Doctors Visit

[Becia]

After the last month of struggling with symptoms, doctors, meds not working, and basically my body deciding it hated me, todays visit with my general practitioner has left me surprisingly empowered against my dysautonomia, and full of ideas and hope.

This was a follow up to my Kings Daughters hospital admit at the beginning of the month that left my body basically about to fail. He had originally tried to get me admitted to his hospital, but when he sent us to the ER, they decided I didn't meet criteria for THEM to admit me, and set me home, hence how KDMC became involved. When he walked into the room today, he could tell an immediate difference, and as he started reading the reports from my tests, he was just floored at how far gone I was.

Together, we decided the following:

1.) That the EP that has taken over my case from my now deceased cardio, is no longer really needed. While I do have the tachycardia of POTS, and I've been trying to advocate for treatments from him, he has shown no interest in moving forward with these decisions, even though he is trying to get me to Toledo and Dr. Grubb. I seemingly am having more neuro side effects from this dysautonomia as compared to cardio effects (aside from the tachycardia). So tomorrow, I am calling back to my cardio's office, and requesting my case go back to my former cardiologist before I was turned over for my ablations. I am cool with this, I loved my previous cardio, and I would prefer to keep a cardio in the loop of my case, since they did go through and destroy parts of my heart trying to correct the rhythms.

2.) I meet all sorts of criteria in his looking of my history, for IV therapy at home. He will be coordinating the implantation of either a PICC line or a subclavian port with my cardiologist. I am completely overjoyed at this prospect, because I've been pushing for it for some time, but with the diagnosis of refeeding syndrome from not being able to swallow correctly, if at all, it seems I'm a much better fit for this now.

3.) He is going to try me on something for my insomnia issues. Tried to pick up the script today, but my insurance required a prior authorization from him first, and they just closed as we left, so tomorrow morning I will be picking that up. One more night with no sleep isn't a big deal anymore to me. Besides, the Westminster Dog Show is on tonight, so my evening is kinda planned, lol.

4.) GET RID OF MY NEURO! I have been paired with a new neuro from KDMC in Ashland, and while I have issues traveling that distance (hour and a half each way depending on who's driving me), they are putting plans in motion to get me into Cleveland Clinic, where they can better serve my issues. My current neuro refuses to see the neurologic side of POTS, thus refusing to help me. Last medication they tried to put me on is possibly the medication that started all my heart issue even. And while I may not die from a migraine, I can die from the side effects the migraine gives me, like not being able to hydrate, eat, etc.

5.) Vanderbilt has got to be a go. Plain and simple, after doing tests in his office and reading my history, he is making calls and pushing for me to get there as soon as I can. I have the paperwork filled out to be considered, just need to do the bp and heart rate readings and mail in. I'm kinda nervous about this because its so far away, but if I can get the hydration therapy started, maybe this will make me strong enough to tolerate travel. He agreed that I need to go somewhere I can get more in-depth POTS definition, and seemed to be very high on their program.

6.) Last, but not least, I'm not crazy, lol. He kept reminding me of this. I told him I wasn't trying to be a smart aleck, but just trying to research items and things I can do at home that have the ability to help me. Physical therapy will be part of this, because I am having some weakness in my arms and legs, so I'm in the process of looking for a recumbent bike and/or a rowing machine, a HR monitor to keep an eye on my tachycardia issues while doing activities, as well as coming up with a plan of attack, so to speak. Now, part of this is also gonna require me to listen to my body, and if something isn't right, I have the right and ability to speak up and stop it, and I must follow through with it. My problem is I don't want to say no to anything that might help me, but the SSRI crisis they put me into for the sake of "Maybe this will help, maybe it won't" has completely made me paranoid. So I am going to listen to my body more, and I gotta let my mind be at ease if I can't accomplish _____, whatever blank may be.

I don't think I've felt this good about an appointment in AGES. It was kinda nice to feel empowered and excited about my prospects. To not be coined crazy, because looking for a pillow or a bed that will have me sleep at a 35-40 degree angle might help me regulate and not pass out so much in the mornings. To request they poke needles in me to give me fluids, because frankly, I really want to try eating the pizza, and to have room in my stomach for it.

Was just a real good visit. Just what I needed right now, a real good visit.

[Tobiano]

I'm so happy for you Becia. Sounds like a good plan. All the best

[Becia]

Thanks Tobiano... after all thats been going on, I really needed some good news and progress. And pizza. I cannot tell you how bad I want pizza, lol.

[Chaos]

Yay for doctors who "get it"! Glad you finally had a good appointment and have a game plan now.

Good luck!

[Alison]

I'm glad you had a good visit

[BeforeTheMorning]

Wow Becia, that's great! So glad you finally have someone listening to you and who's willing to try new things.

[IceLizard]

That's wonderful! I'm happy that you and your doctors have a plan of attack now.

[looneymom]

This sounds like a plan to recovery. Happy for you Becia. Keep us updated!

Rachel

[Becia]

Its nice that I'm getting all my ducks in a row, although some of the ducks I'm having to treat like Donald Trump and say "You're fired." I made the call to my cardio office today to switch doctors, and I tell you, it was liberating. Strangely liberating. Same with my neuro... they asked when I wanted to reschedule, and I replied "never." Totally shocked the secretary, but I explained he seemed to show no interest in my case and requests for help or different treatments, so why pay for the visit if its gonna be the same story.

I started the orthostatics for Vanderbilts paperwork today. Total disaster. The laying down one was great, but my friend could only get me to stand for 15-30 seconds before I passed out. She started my monitor at 15 seconds standing, it finished at 30 seconds about when I passed out and had to lay back down, and while it was only 160/116, HR 118 (and its been much higher if I was able to stand longer), it was horrible trying to recover from that. The longer I stand, the harder I fall I suppose. I know its hard for me to recover, she's had to pick me up off the ground several times.

Ordered a new wedge pillow to try sleeping at an angle, I've ordered a Fitbit to use in monitoring my activites and my sleep patterns, have an appointment with my therapist tomorrow... I'm done for the day. And I'm determined, I'm not gonna feel guilty about this.

[Chaos]

The combination of wearing a HR monitor and the fitbit has been surprisingly educational to me as far giving me insights into how my body is functioning....or not. It's given me more objective data to back up how I feel so that I am learning to trust the signals my body gives me more and not ignore what it's telling me so much. Have always been one to push thru everything in the past, so trying to learn how to stop before I totally crash has been hard.

[Becia]

You sound just like me chaos, always feel like I have to keep going for the sake of others. I've officially overdone it today, made some dinner that make me extremely ill before I got into the shower. I gotta remind myself that tomorrow is a new day, and my stuff will still be there waiting on me.

[Chaos]

Becia- Yep. The last two years of this illness have been a particularly rude awakening to my ego as to just how well the world can keep functioning without my daily interference. Sun keeps coming up every morning whether or not I do.

[Becia]

Lol, yeah, I feel ya. World just keeps turning, and I keep begging it to just slow down because I'm turning double time with it.

[Becia]

Shouting this from the rooftops... I just received a phone call from Cleveland Clinic, and I have an appointment next Tuesday with Dr. Browning, one of their POTS people. I am so blooming EXCITED right now. I feel horrible because I've been up sick most of the night and day, but this phone call just had me crying some happy tears. I never thought it would happen this fast. I don't even care that it is at 8:40 in the morning, and I have a four hour drive to get there, I'm just glad I'm getting there.

This has been one just weird day. But with this phone call, its ending on a positive note.

[dkd]

Awesome news!! Maybe you can go up the night before and spend the night or drive a couple of hours anyway to get closer and not have such a long drive on the day of the appt.

[Becia]

That's the plan as of right now, to spend the night, since I have to be there so early. Not looking forward to hotels (creature of habit), but am looking forward to seeing what all is wrong with me, lol.

[IceLizard]

I am excited for you! Please let us know how it goes.

I am off to ride my recumbent trike while the weather is good.

[Becia]

Enjoy that nice weather. We got more snow coming our way. I was gonna ask about the recumbent trike... what brand is yours? We were talking about therapies and such for me to try, and all I told them is I want to get back to at least bike riding (I used to race for charity). A recumbent was mentioned, and I saw yours in your photo, thought I would ask

I also had a great set of email conversations from a lady at Vanderbilt's clinic today too. Mailing that paperwork off on Tuesday to be considered, feeling rather hopeful. Like a friend said "Kinda pays to be a freaky kind of POTS person lately, doesn't it?" I guess it does... I'm getting more accomplished for seeing specialists in the past two weeks than I have in the past 7 months!

[IceLizard]

I had a wonderful ride around my neighbourhood in 70 degree weather. This just 2 days after an ice storm, go figure. My recumbent is a TerraTrike which is a Michigan brand of low cost (relatively speaking) recumbent trikes. I got mine via a spring online "garage" sale for the reduced cost of $700, $1000 including shipping and accessories. I figure it is basically my car so I was willing to spend that much.

I have mine fully reclined, which means I can lay back and pedal at ease. It is easier for me to pedal this than it is for me to walk. The trike is often used by people with medical special needs for rehabilitation.

http://www.terratrike.com/specialneeds.php

It's great you've been able to persevere until you found the right care. Sometimes it pays to be different...

[Becia]

Awesome, thanks for the info! I might be close enough to stop by a shop and try one out. I was asked what I missed most about my past that I can't do in my current life, and riding my bike was above driving my car. I miss working on my car more; that's what dad and I do together, our project and bonding time. But I miss racing, and riding.

Pays to be a freak, my motivation, lol.