Hematology Appt Or Speed Dating?

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Just a look into my online appointment record (Duke MyChart). Usually this space is reserved for medical lingo and basic checks and balances.  I don’t know why, but I find Dr. Wang’s notation from last week’s appointment absolutely hilarious.. 😂

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Urgent Care Meditation

If we have to be chronically ill, we should at least be granted a ‘get out of jail free’ card when it comes to colds, stomach viruses, strep, the flu, etc… ugh. Oh well. Feel even crappier than usual, but there’s no use getting upset over it.

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Breathe in strength; breathe out bullsh*t” 👌🏼

 

Duke Syncope & Dysautonomia Appt

Had a good appointment at the Duke Syncope & Dysautonomia Clinic today! Being honest with doctors FullSizeRenderis not something that comes easy to me, but I think I did pretty well today. My blood pressure readings are looking MUCH better than they have in months prior! That is likely due to super high doses of Midodrine, & Fludrocortisone, as well as 12mg of Prednisone daily…but it is a good thing regardless. They were concerned with my heart rate, though. Despite taking all my Dysautonomia meds (including Bystolic, my beta blocker) & getting IV infusions, I am still experiencing significant tachycardia, especially upon postural changes. My orthostatic vitals today, for example: 113bpm lying down, 129bpm sitting up, 147bpm standing. Now, those numbers aren’t terrible…I’ve definitely seen worse, this week alone! But Jenn was not happy with those numbers & said that kind of increase upon sitting/standing is not good considering the medications should be taking care of those dramatic spikes. She was also a bit concerned because that was simply standing still, not trying to walk and carry on about the day. We agreed that the Bystolic is not the right med for me as it drops my blood pressure too low (causing me to need more Midodrine which I already take an overdose of each day)…so she is putting me on a new med called Ivabradine. I’m really excited because Ivabradine helps lower heart rate without impacting blood pressure! Only problem is it’s a med generally used for heart failure patients, so we will probably have to fight with insurance to get it covered. But Jenn says she’s confident we’ll win the case, considering I’ve tried almost every other beta blocker out there and my symptoms are so severe! Really hoping it is a quick process getting it approved, as I am super excited to try…especially because, once we finally get my heart rate under control, I get to begin physical therapy! IMG_9020Jenn referred me today to a PT who is familiar with Ehlers-Danlos Syndrome & POTS! Nicole sees him and really likes him. Apparently, he understands the pain, dislocations, fatigue, weakness, etc. that comes with EDS & how to best work with/through such symptoms. Really looking forward to it! Also while Mom & I were at Duke, we met a fellow Zebra who was using a wheelchair with SmartDrive. We ended up talking with her about it (& other things) for a good 15 minutes, and on the way home from the hospital, mom decided we will have a fundraiser because I need one, too! More on that later.. 🙂 Now for a nap– that appointment left me exhausted!

 

 

To The Doctors Of Chronic Illness Patients

Are you looking through our charts, our lengthy and complicated charts, wondering what you got yourself into? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. We can’t be easily fixed and we know that can be disheartening and frustrating for you. We get disheartened and frustrated, too. Hey, look at that! Common ground. Not a bad place to start!

Read more: http://themighty.com/2015/11/to-the-doctors-of-chronic-illness-patients/#ixzz3qYSgQutb

A Letter From A Doctor To Those With Chronic Diseases

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

Read more: http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

I truly appreciate this doctor’s honesty.  See next how my spoonie sister Catherine Richardson responds!

REX Hospital (Mis)Adventures

IMG_3409So, here’s a little story about when I went to REX hospital to get a new feeding tube placed after losing mine earlier this week.

First, a little backstory: When it fell out (more like when it was RIPPED out as I fell down the stairs), I covered the stoma in a sterile dressing and headed straight to WakeMed North where I met Hillary. I straight up asked the nurses there if this was something they were equip to handle, and they suggested we head to REX instead where my surgery was done. I thought that sounded like a great idea, and so off we went.

We waited in the REX ER for hours before they brought me back. It was another two hours of lying in the bed until they informed us they had no idea what to do and that I should just call my surgeon in the morning. I asked if they would contact the on-call surgeon or at least give me something to stick in my stoma so my newly-established tract would not close, but they offered no help and said it should be fine. New to the feeding tube world, I did not really question their judgement. I mean, these were doctors…at the hospital in which I had my surgery…they knew what they were doing, right? So off we went back to College Inn. In the morning, I called my surgeon’s office, and was scheduled to go to Interventional Radiology today (July 30th) so they could slide a new tube in.

Upon arriving at the hospital, they got me registered, started an IV, hooked me up to all the monitors, and rolled me in to the ‘operating’ room. I was transported on to the table and strapped down. It wasn’t until that point that someone decided to remove the bandage to see what they would be working with (aka my stoma/intestinal tract). The doctor carefully peeled back the bandage…and then I heard him curse. He began yelling at the nurses and other physicians & technicians in the room, demanding to know why no one had checked this before.

The stoma and tract was so new, it had completely closed up!

Guess what that means for me? Yet another major laparoscopic j-tube surgery, as if the first one never happened at all. I have to go through it all over again, just because the ER wouldn’t help and thought it would be “okay” despite my objections and pleading for a second opinion.

The above picture is our “wtf, really?” faces from when we got back in the car after this whole ordeal. I tried to laugh and joke about it at first, but now that I’m back at the apartment and alone, I cannot help but cry. The fun just never ends…

Post Appointment Thoughts…

I’m really worried about Sharon.  She just seems so stressed and worn lately.  Maybe I’m reading too much into it…I tend to overanalyze people’s expressions, body language, tone, etc., especially when it’s someone I care for deeply.  But she just seems so exhausted. Older, somehow.  I don’t like what this new place is doing to her…