Category: The Drugs

Another Mayo Visit In The Books

Actually it will be our 11th visit to Mayo Clinic in Rochester Minnesota since September of 2014. Ironically nine of those trips have been between 4/2016 and 6/2018, so that averages out to a visit every 2.888888 months. If you drove, it’s about 825 miles, one way, and if you never had to stop for gas or a potty break you could make the trip in about 12 hours; I think the fastest we ever made it was 15 hours. To fly is a little easier, but in order for it to be affordable you have to fly from CPR to DEN to MSP, then rent a car and drive an hour and 20 minutes south to get to Rochester. One might say…Why fly out of Casper, drive down to Denver and then fly directly into Rochester, surely that would have to be easier and cheaper? <insert evil laugh here> NOT! Oh if it were as easy as you thought. Here’s how it would go…assuming there is no traffic, it would take approximately four hours to drive about 280 miles to DEN, then your flight itinerary would go something like this, DEN to SLC to MSP to RST, and the cost of your ticket would be no less, but you’d have serious parking fees at DEN when you got back, don’t forget about the toll, and you might need some gas along the way.

Thinking about all that makes my head spin, but there is something to be said about being able to fly back home, grab your checked bags within 15 minutes of deplaning, and being home within 30 minutes of landing.

All of that being said we have our 11th trip in the books. I’m not sure if it was a good visit yet, because I’m not 100% sure my transplant team has finally realized they have been trying to cram a square peg in a round hole, but I have hope that this time around we got our point across.

Why am I a square peg? Well, for those of you who know me, it’s not for any of the reasons you may be assuming…LOL! I have a rare blood disorder call Primary Cardiac Amyloidosis, also know as Immunoglobulin Light Chain Amyloidosis (AL) with Cardiac Involvement, that has been successfully been in remission, as of today, 38 months and 22 days. Because of the rare blood disorder I also have a rare problem with my heart called Restrictive Cardiomyopathy in my left atrium. Basically the left atrium of my heart is thick and stiff so it doesn’t squeeze and release like it should.

Neither one of these things are addressed by UNOS, the governing body by which all organs are allocated. If my heart was failing due to a more common means I may be in a different situation, but for right now I need my transplant team to understand what their up against. The good news is that in the Fall, we hope, UNOS is rolling out a new set of listing criteria that addresses both my Amyloidosis and the Restrictive Cardiomyopathy which would put me in a position of getting a heart much sooner. The last hurdle is convincing Mayo Clinic in Phoenix to take a chance on an Amyloid patient. The transplant list is much shorter and the donor pool is much larger, so with my blood group, O, which is the most common, my wait time would be less than in Rochester.

Oh and I can never get away from that place without them tweaking my drugs…UGH…thankfully there hasn’t been any bad reactions to the change, so far…

Hopefully I will here sometime next week if I’ll be going to Phoenix to get to know their transplant team!

I Survived…

…and so did my family!

Detoxing off of Zoloft was definitely not what I anticipated, and I can’t help but feel a little misled. At no time did my Psychiatrist ever mention that in the event I had to stop taking the medication I should wean off over a 90 day period. And when my cardiologist gave me a weaning schedule of 28 days, no one mentioned I would nearly lose my mind from weaning off the drug so quickly. But hey, I don’t have enough going on, what’s a little extra crazy to add to my life’s entertainment value.

Thankfully the crazy has passed, as have the withdrawal symptoms, and I’m starting to feel a little bit more normal (hey no laughing!)

I’m off to Mayo in Rochester again next week…I pray this trip is better than the last.

24 Days

It’s been that many days since I took my last Zoloft. I know it doesn’t seem like much to a lot of people but to me it means the end of one reality and the beginning of another. Although that new reality may be temporary (six to nine weeks they say,) it is none the less real in my head.

It’s like a roller coaster you didn’t chose to ride and you can’t get off of. As if that weren’t bad enough, you never know how high the highs will be, or how low the lows go; you only know they are coming and you have no control. Let’s not even talk about how bad the music is from the seat you got stuck with on this ride!

24 DAYS!

39 days left…If I could stop the never-ending cycle of thoughts in my head I would.

  • No More Xanax
  • Write More
  • Speak Less
  • Psalm 23
  • Turn Off the Phone
  • Breathe
  • Pray
  • Don’t Judge
  • Tramadol is Poison
  • Curse More
  • Be Human
  • Micah 7:8
  • Walk the Dogs
  • Laugh
  • Be Courageous
  • Go to Church
  • Make a Friend
  • Listen

For the love of all things Holy, please shut up! Not you, me…can I have a Xanax now?…NO!

The Pills

pills

The pills are getting to be overwhelming. I’m afraid to even count them at this point because I really don’t want to know the total number I swallow every day. I know I take enough potassium every day to kill at least three adult men, I take enough diuretics to float a boat, and enough blood thinner for an army. This Sunday morning ritual of refilling my pill containers with my weekly pills is too much sometimes. I do it, but I certainly don’t enjoy it. I don’t actually have a single pill organizer anymore, I have to use three separate ones that I’ve marked, morning, afternoon, and evening. The single pill organizers that have multiple containers for daily pills don’t come in a large enough size for everything I take in a single day.

<SIGH>

I need to get over this weird pill anxiety. I’ll have to take pills like this for the rest of my life, so I’d better get over it. Taking them causes anxiety though, thinking about taking them does as well, but despite that I do take them as the doctors have prescribed because I know they’re keeping me alive.

So there you have it, my Sunday morning, distributing my pills for the week, then laying them out so I don’t forget. I have Buddy (from The Secret Life of Pets) watching over them for me! I know I’m fortunate to have good doctors, and the means to pay for my medication, I know it could be so much worse than I feel some days.

Post Mayo Wrap-Up

I can tell you that after this visit to Mayo Clinic, if I ever hear another medical professional utter the words, “your case is very complicated,” my head might just pop right off my shoulders! Really? It’s complicated? Yeah, I’ve known that for the last three years, I’ve lived it, but thank you for reminding me for the millionth time; I may have forgotten.

I don’t want to say that this 3 month check-up visit was a waste of time because it wasn’t, it was just very frustrating. Frustrating to the point that I’ve had to ask myself, why am I doing this?

The reality is that I’m dying, faster than the average person, but slower than the “normal” heart failure transplant patient, but my case is “complicated”. I dream, pray, and wish my heart to get better, but it’s not going to. The damage is done and there’s no going back.

So I see a few doctors, some of whom actually listen to me, some who chose not to, or rather, appear not to. They make a few medication changes (BARF!) suggest a few more, then send me on my merry way. Never actually addressing or attempting to find a solution to the new issues, symptoms, problems, I’m having.

Then to wrap up the whole adventure I’m told that UNOS (United Network for Organ Sharing,) the governing body that sets the rules for how patients are placed on transplant lists and how organs are dispersed, is going to change the rules at the beginning of the year. It’s not clear if the new Adult Heart Allocation System is going to work in my favor or not. It does at least address Amyloidosis specifically, but how the hearts are going to be allocated is still a little unclear.

Looks like I’m back in the transplant bubble again…not my favorite place to live, but I think I can hang here awhile and chill.