Mandy’s Story

Site created on August 13, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. Since May Mandy has been dealing with very unusual health issues. It started with an ear infection but that was just the beginning. Since that time she has seen about a dozen doctors and been to countless clinics and hospitals. We are finally getting close to a diagnosis but this still needs to be confirmed. It looks like it’s an auto immune disease called Wegener’s Disease. It is very rare which is why there’s been such a problem with a diagnosis, very few doctors have ever treated it.  Over this last weekend, Mandy’s heart started racing. This is not a new problem for her as she’s had a few episodes of what is called SVT before, but it’s always been easily controlled. Unfortunately on Saturday we couldn’t get it to come down. She went to the ER in Hutchinson who transported her to The Minneapolis Heart Institute at Abbott Hospital.  Her troponin levels are very high which can indicate a heart attack. They are taking her in for an angiogram to determine what the problem is. They will also try to do a sinus biopsy as this is the only way that a clinical Wegener’s diagnosis can be made. She’s on large doses of prednisone to combat the Wegener’s and a treatment plan will be put in place once we find out more details about the heart.

Newest Update

Journal entry by Mandy Erickson

Hey all! Just thought I'd pop in here and give a little update on how my week went.

Tuesday I had a routine checkup with my rheumatologist. I parked, walked up the two flights of stairs, decided to use the bathroom before I checked in. Did my thing, buttoned my pants, felt light headed and boom, passed out. I don't think I was out long - fun stuff finding yourself on a bathroom floor. . .same bathroom they use for people to give urine samples. . . nope, not thinking about it, not thinking about it. *shiver* I got up, felt fine, no dizziness and checked in to my appointment and told them what happened. They took me in right away and checked my vitals and all looked good and I felt okay.

But. . . . . when you are a heart patient, you don't get to go home. They weren't so worried as to call an ambulance, so Dori and Hal came to Maple Grove, they drove me and my car to the Maple Grove Hospital emergency room, thankfully my rheumatologist had called ahead. They did their thing, blood work came back normal, they did an ICD check too. This is the pacemaker/defibillator I have, they can wirelessly "hook up" to it to get a report. Of course, that came back that I was in ventricular tachycardia (v-tac, abnormal fast heart rate) about the time I passed out. My implant was seconds from shocking me, but somehow my body pulled itself out of it. So I got to take another trip to Abbott. Some people go south for winter (and this year should have gone souther, I guess!), I go to Abbott. Dori and Hal could have taken me themselves, BUT it was already dark and I felt better not having to worry about the drive in and them driving home at that time. I opted for the ambulance ride. Besides, IF something else were to happen, it was best if I was in an ambulance with people who know what the heck to do.  My drivers, Becky and Kaitlyn, were very accommodating, I even snoozed a little on the way over. My "penthouse suite" at Abbott was ready for me and they gurneyied me right in. I was there from Tuesday 11pm to Thursday 4pm.

I'll keep this next bit short. They really aren't sure why I went into v-tac. The docs think it's just a medication thing, which has been adjusted. They also added another pill to my cocktail, Farxiga. Yes, another one of those you see on TV, which as we know, means they do cost a bit more. And yes, it is a pill for diabetics, but the FDA just approved it for heart patients to help eliminate more fluid. Now, I do not have a problem with retaining fluid, but they think every little bit will help with my heart health. I also had a CT scan of my heart, everything looked good there, nothing clogged! And the ECHO they did showed no new damage compared to last years ECHO, so that's good. My heart is as healthy as it can be.

I did actually have the appointment with my rheumatologist on Tuesday too. Nothing new there. I'm scheduled for another infusion in April. Should be one more this fall and then, hopefully, that's all for the infusions. My immune system can start building itself back with only the good stuff. I'll have to watch for flare ups, but that's it! (Side note: super fun not having any immune system during a worldwide pandemic, that was not on the bucket list and I do not suggest it.)

Most inconvenient part, (other than I wore the same underwear for a day and half before I asked for new and it was a lovely boy short mesh pair - oof!) - the doctor advised against me driving until this new medication takes hold and they're confident things are regulated. So thanks to all of you that have offered to chauffeur me to and from work!

Since this is a thing throughout these entries. . .  my pee color is normal!

Big bang boom and that's what you missed on Glee!

 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Mandy Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Mandy's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top