Category: The Doctors

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!

The Machine

I have a machine in my bedroom that breathes. Well, it sounds like it anyway, it has a gravely kind of inhale, then it exhales in sudden, rhythmic bursts. Attached to the machine is an opaque green plastic tube, 15 feet, 25 feet, often times 40 feet, and sometimes 65 feet. In addition, there is a clear plastic cannula at the end of the green tubing that is currently allowing three liters of oxygen to to flow into my nose and hence my lungs and blood stream.

On our way back from Mayo Clinic last Saturday we stopped at a store in the airport and I bought my first set of Beats. It didn’t occur to me at the time of my purchase just how important my pretty little pink urBeats Earphones were going to be.

That machine runs 24 hours a day, seven days a week. Some times it’s the only thing I can hear. The OCD in me starts to count the inhale and exhale of the machine, then it’s 2am, 3am, 4am; 254, 255, 256, 257…

They ran a lot of tests at Mayo this time; 15 appointments in three days. The outcome of some were great, but as always some of the results weren’t the greatest. My bone marrow biopsy showed no “minimal residual disease” meaning my MRD is totally negative, no Amyloidosis, still in remission! The heart catheterization didn’t yield the greatest results though, that one showed my heart is getting worse. Not very fast by most heart failure standards, but like watching grass grow, it’s moving along at it’s own pace. It probably has something to do with the fact that I’m in heart failure because of the Amyloidosis and not by means of a more common reason. The doctors made some minor medication changes and said I will require supplemental oxygen for the time being. Living at almost 6,000 feet probably doesn’t help with my oxygen intake. We did agree, because of the slow nature of my heart failure, I didn’t have to return in three months, I could wait six months and return in April, thank God for small favors. Of course if something with my health were to dramatically change between now and April I would have to return sooner.

More about this machine; it drives me crazy! I find myself going into other rooms where I can’t hear it as well. Unfortunately, there isn’t a room in the house I can’t hear that thing inhaling and exhaling ad nauseam. In come the pretty little pink earphones…you knew where I was going with this. Not only do they completely obstruct the sound of the machine, listening to music curbs my anxiety and I can fall asleep listening to my favorite tunes, BONUS!

Being tethered to a machine can be a bit of a drag, especially when you get yourself wound up in your own oxygen line prepping dinner and almost trip and fall on your blind dog. I’m not stuck in the house though, I have a little portable machine that I can carry around with me when I go out. How fun does that sound? NOT! I don’t mind it really, I understand why I need it, but it’s not exactly the new Fall accessory I wanted to add to my wardrobe this year. That being said, I feel better with more oxygen in my system and I have more energy to do some of the things I like to do.

 

Status 2

That’s me…based on the UNOS criteria for heart transplantation I am now a Status 2 for transplant. To quote one of my doctor’s clinical notes from yesterday’s discussion of my case…”Patient was approved for UNOS listing to receive a deceased donor heart transplant and met listing requirements.”

Status 2 gets my foot in the door. After the first of the year when UNOS puts the new listing criteria and distribution system in place my status will change. Because Amyloidosis is addressed specifically in the new criteria my status will rise to a more critical level; making a transplant a very real possibility.

I’m in the bubble now, and I’m OK with that. I’m a little scared, a little excited, and hopeful.

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.

I Don’t Want to Take My Pills

Morning Pills
Morning Pills

Don’t worry, I am taking my pills, I’m just having a hard time with it right now. I go thru these phases now and then where I’m just sick to death of the daily regiment. Right now, because they had to adjust some of my medication, I’m taking 38 pills a day. Not at once, thankfully, but in large batches three times a day. The ironic thing is I am weaning off of one of my heart medications which means I should have two fewer pills to take every day, but they increased other doses that negated losing those two pills from my dailies.

The medication we are currently having issues with is my potassium chloride. It’s an electrolyte that is necessary for your heart muscle to squeeze properly. Having low potassium is called Hypokalemia, and for me it could be potentially fatal for my potassium levels to get too low. Right now they are too low and have been for about four weeks. So my cardiologist has increased my dosage. I am currently taking 200 mEq’s a day which is the equivalent of 15,000 mg. An average banana, which we all know is high in potassium, contains approximately 400 mg. So I would have to eat about 38 bananas a day to get 15,000 mg of potassium in my system. Now, extreme banana theorists believe that six is the absolute limit – seven tips the scale into potentially overdosing on potassium. So imagine my shock when I did the math to realize I’m basically taking, in pill form, the equivalent of eating 38 bananas!

Potassium is a tricky electrolyte that has to be balanced in your body or it can cause serious issues. Too much or too little can be dangerous and fatal in some people, especially people like me with a weak heart and bad kidneys. High potassium is call Hyperkalemia, and can cause acute kidney failure. I do have issues with my kidneys as well, so when my potassium gets to high I become symptomatic of overdose. Not surprising but that doesn’t happen often. I can only recall two or three times my potassium got a little high, for the most part it stays pretty low.

I promise I’m not complaining, I’m just expressing a little frustration with my body and it’s unwillingness to function properly at times. We don’t know why my potassium does this. It will be fine for a period of time then for no apparent reason it will just drop off to a very low and dangerous level. When my cardiologist starts twitching a bit I know something is serious; he’s a pretty mellow guy, he’s been twitchy the last 2 weeks.

The good news is that I basically feel fine! I wouldn’t know my potassium was high or low without the weekly blood tests I get to check my electrolytes and kidney function. If it’s low for a long period of time I do start to become symptomatic and I’ll get a blood test to confirm and that’s basically what happened this time. I was feeling a little run down, they did an ECG (electrocardiogram, aka an EKG) and found my heart voltage was low and my QT Interval was dangerously long, which are all signs my potassium is out of whack. But really, other than feeling a little more tired than usual I have been feeling OK. I just wish my body would stop giving blood test results that make my doctor twitch…LOL!