Category: The Heart

It’s Starting to Make More Sense

I always wondered why the divorce rate among people with spouses who were ill was higher than average, but it’s becoming more and more apparent why. Especially after I yelled at my husband last night, telling him I thought I wanted a divorce so I could just be alone. If I’m going to feel lonely all the time I might as well be alone, right? At the time it made sense in my head, but now I feel like a fool for even speaking those words, or any of the subsequent words that were meant to hurt him. This is all seems so unreal, painful, undignified, and just plain cruel that sometimes the emotions associated with all of those things happening at the same time spill over on to the people around me. which brings me right back to thinking I should be alone so I can’t hurt anyone else in my life.

I’m not doing my sons any good; half the time they don’t seem to want to have a whole lot to do with me (I can’t blame them), and don’t get my started on the two daughter in-laws who I’m sure think I’m totally crazy, and want little to nothing to do with me if they can help it. I regret so much and I simply can’t go back and change anything, and I’m not given any leniency for being terminally ill. I think that’s the part that hurts the most. It doesn’t matter that I’ve been sick for nearly six years, that I have a terminal blood disease or need a new heart. I’m still held to the same standard as I would be if I were perfectly healthy, and I just can’t live up to those standards. So, I’m always a failure in one way or another to one, two, three, or all of them…

This all sounds like a huge pity party, and maybe it is, I don’t really care. I’m alone, I’m lonely, I’ve made attempts to make friends, I’ve gone to church, I’ve tried to socialize, I try to stay in contact with people and not just drop off the face of the earth. But I can tell you none of that has helped me make a single friend or find a single person who will come to my home and visit with me when I need someone or I can’t get out. I pray for God to give me patience, understanding, wisdom, peace, and so far I’m still struggling with all those things with no hope of figuring out how to get closer to any of them.

So, it makes sense why people just throw in the towel of their marriage and say they can’t do it anymore. Being the caregiver has to suck, especially when you never know when you’re going to do or say the wrong thing. And being the sick person is like a slow a torture that you can do nothing to make end. You know I often ask myself what I did to deserve all this…

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.

 

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.

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.