Category: The Drugs

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.

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!

Surprised and Thankful

Man and Freedom
“Man and Freedom” by Ivan Meštrović. The sculpture depicts the human desire for indepence and self-realization. He is mounted on the wall in the Nathan Landow Atrium between the Gonda and Mayo buildings.

We’ve been in Rochester Minnesota at Mayo Clinic since Monday. Tuesday and Wednesday were scheduled to the max and I had one appointment after another. By the end of Wednesday evening I had been stuck a grand total of eight times, either getting multiple injections for various reasons or having blood drawn. To say I felt a tad bit like a pin cushion would have been an understatement. Really Thursday was the big day, that was when I had to go into the hospital for my fifth heart catheterization. The cardiologists in the heart and lung transplant department fully expected my heart to be in worse condition than it had been in July and October as did we; we were told to expect it. In all reality my heart should be getting worse.

Because of my Primary Amyloidosis, I have amyloid buildup on my heart. It causes my heart muscle to not expand and contract as it would normally. I was diagnosed pretty close to stage 4 of the disease so the buildup on my heart was/is significant. I went through five rounds of chemotherapy and an autologous stem cell transplant (basically a bone marrow transplant with my own bone marrow) and I have been in remission since April 13, 2016. I was told very emphatically not to expect any recession of the amyloid on my heart. Although it was possible, it was highly unlikely.

A year after my stem cell transplant, April 2016, an echocardiogram was performed to measure the thickness of the amyloid on my heart and at that time there was no recession. Disappointing, but not surprising. Another echocardiogram was done in July, 2016 and again no recession. We hadn’t expected anything different.

Now we’re into March 2017 and I have yet another echocardiogram and this time, recession. I have a heart catheterization the next day and the cardiologists conclude that my heart function has actually improved since July and I no long need the extra medication (inotropic therapy) they anticipated I would need to get me by until a heart became available for transplant. As a matter of fact, I don’t need to be listed for heart transplantation at all at this time because as of right now, it looks like my heart function may be improving.

Of course they can’t give us a reason why because they simply don’t know enough about the disease yet. But we’re going to take this positive news and roll with it for now.

I’ll come back to Mayo in three months for another check-up by the heart and lung transplant team, and they will continue to keep an eye on me every quarter. We hope that my heart continues to improve and heal itself over time and I stay in remission. With any luck, there will be new drugs developed in the near future to help eliminate the amyloid on my heart. There are currently two clinical trials going on for drugs that do exactly that, one of which is looking very promising. Although it’s not a cure, they are at least getting closer to a treatment for Primary Amyloidosis with Cardiac Involvement.

Right now I’m thankful…thankful for all the prayers and well wishes. Thankful to my family and friends who has been helping me get through all of this, because, let’s keep it real, it’s been hard at times. Thankful to the doctors and nurses who have cared for me over the last five years. But most especially I’m thankful to God for giving me this chance to live a purposeful life, I won’t waste it!

A New Found Respect

Bum Cream of Choice!

I have a new found respect for babies, diaper rash, and Desitin, I’m only kinda joking…

It’s a totally gross subject but it needs to be said. The road to hell runs through my bum! And there is no amount of Desitin on the planet that will ease the indescribable amount of discomfort it causes. Anyone who has had cancer knows exactly what I’m talking about. There will become a time when you cease to have control over your own bodily functions, adult diapers are often involved, and some of the worst diaper rash you can imagine will ensue. Desitin is often the bum cream of choice, it’s mine, however I’m sure there are others.

But I know why babies scream their little heads off when they need a diaper change. The pain is EXCRUCIATING!! I can’t tell you how many times I’ve been brought to tears as an adult woman at just the thought of having to “go.” Because there aren’t many drugs that I know of that don’t cause some kind of bowel disturbance the “going” part can become traumatic to say the least, especially if it happens at unexpected times and with little to no warning. A simple cough or sneeze shouldn’t be the catalyst for your body to stop working as it was intended.

I sit and write this entry, half a sentence at a time, as I run back and forth to my bathroom, with every conceivable cough or sneeze that may escape my body. Of course we have taken every precaution to safeguard our mattress with multiple layers of protective rubber sheets just in case. Not to mention, the always clean, spare bed linens waiting in the closet just in case an accident occures. I guess what babies don’t have that adults do is the the total loss of dignity. A baby messes their diaper, squeals a bit, wiggles around, gives you a little smile once it has clean nappies on and away they go, no shame.

I’m past shame I think, it’s just a part of my reality right now. I hope that sometime in the future I will regain the control I had before and don’t need to dart off to the restroom with my hair on fire in a panic that I might not make it. Until then, Desitin is my friend!