Bathroom Emergency

When you go into the hospital with fluid overload that requires IV diuretics to relieve, every fluid you put in your body is measured, as is every fluid that comes out. The most common way to measure the output is with a Urine Hat Specimen Collector, affectionately called “The Hat”. Having a private room so that you can use the restroom as frequently as you need to is always desirable, however after being asked to give up my private room for a gentleman with a compromised immune system I ended up having to share a room with another patient. I was assured she was quite pleasant and was very quiet. The quiet part I found somewhat ironic considering there is nothing about this hospital that is quiet, especially when your room is directly across from the nurses station. The accommodations were adequate though, and my roommate required assistance so she didn’t frequent the restroom nearly as often as I did.

Then came the morning of the day I anticipated being released. I was sure I would be discharged shortly after my final dose of IV diuretics, so I prepared myself for a dozen or so trips to the commode with my little hat of course. In between visits to my favorite flushable friend, I would pack up my things and wait for the doctor and nurse to come in, giving me my marching orders, and set me free. Unfortunately, for my bladder, I kept receiving visitors. First the heart failure educator, then the nutritionist, a friend from church, and finally a CNA to check my vitals. By this time my bladder was screaming and it was only a matter of minutes before I simply wouldn’t be able to hold it any longer.

Meanwhile, I notice my roommate being given assistance to the restroom where she stayed for quite some time. While she was indisposed, a couple CNA’s  came in to change her bed linens and lay out a clean gown for her. Finally she came out and I thought this may be my chance to go in and have a quick pee and save my bladder from any further torture, but before I could get there a nurse walked in with a stack of clean towels, waltzed into the bathroom and started preparing the shower for my roommate.

With my hat in hand I go out to the nurses station and standing there is a cardiologist and a nurse manager. I ask where the nearest restroom might be and they look at each other, then at me, and said…”We don’t know!” By the looks on their faces you’d have thought I had just asked them where Jimmy Hoffa was buried. I quickly explained I was a woman on diuretics in desperate need of a toilet and if they could assist me in any way I would be ever so grateful. Again, no assistance from the cardiologist or the nurse manager. I could only surmise at this point that directing me to the nearest bathroom was simply too far below their pay grade. Thankfully a nurse passed by and heard enough of the exchange to understand what was going on and was polite enough to walk me to the nearest facilities.

Bathroom emergency resolved! Upon returning to my room a CNA appeared and I informed her that had to relieve myself at a remote bathroom and wasn’t exactly sure how much output I had since I overflowed the 36oz hat given to me to use, but I’m sure she could figure it out, plus or minus a few ounces, and went back to waiting for my release papers.

Sorry, our scale was broken…

If I ever wrote a book, and I have no plans to, but if I did, I think this should be the title.

I was released from the hospital today after going to the ER on Monday. I was having issues breathing and had gained a significant amount of water weight in a short period of time. The doctors did what they always do, looked at me like I was an alien, then admitted me so they could administer a drug that, may or may not, have helped me, and could have quite possibly killed me, but hey, being the risk takers they are, they took a chance.

Thankfully they didn’t kill me, but it didn’t appear that the drug they were giving me, that was suppose too allow me to shed the excessive amount of water weight, was working either, according to the scale. According to the scale, I gained .45 kg (about a pound) from Monday evening to Tuesday morning, and from Tuesday morning to this morning it appeared I lost .5 kg (a little over a pound). Kind if makes you go…hmmmmm, doesn’t it?

Like the nice, compliant patient that I am, I sat and waited for my doctor to come and see me to let me know if I would be able to go home today or not. While I waited a Heart Failure Educator came to visit me. Actually, it was the same one that visited me yesterday. Unfortunately, she didn’t have any educational material on the type of heart failure I’m in, because, well, it’s kind of rare…Restrictive Cardiomyopathy secondary to Amyloidosis; nope no pamphlet for that. We chatted a bit yesterday and she figured out pretty fast that I knew more about my heart failure than she ever would, so we kept it short and she moved on to her next victim. This morning, I think she was a bit surprised to see me again (I had to change rooms) so she had me sign something saying that I had been thoroughly educated on the subject of heart failure and went on her way.

Later, a petite, older woman came to visit me, the Nutritionist. I spoke with her yesterday as well, and we determined then that I was eating a proper diet, and there wasn’t much, if anything I could change other than maybe giving up Jolly Ranchers, which would happen over my dead body. In all seriousness though, she felt my diet was a bit limited but because of how my body seems to react to food these days she understood my limitations and didn’t begrudge me a few Jolly Ranchers now and then. Again, because I changed rooms, I don’t think she knew who she was coming to speak to today when she entered my room. All she knew was that the resident doctor wanted her to speak to a patient about entering an obesity program.  She sat down and almost did a double take, looked back at her notes then back at me. She told me the doctor thought I needed to be in the hospitals new obesity program, but quickly said that his recommendation was totally inappropriate, apologized, and excused herself. I couldn’t help but wonder if he made the recommendation before he knew the scale was broken? Regardless, it was still a little inappropriate if you ask me.

Finally the young resident entered my room and sat down in the chair at the foot of my bed. Before I could ask him anything, he gave me the amount of fluid I had taken in during my stay and the amount of fluid I was able to shed, and based on his math, I lost about 10 lbs in 48 hours. Then he shrugged his shoulders and said…”Sorry, our scale was broken…” If it had not been for the fact that I had preemptively packed my bags, and they were between him in the chair at the foot of my bed and where I was sitting, I might have flown across the end of the bed and started pummeling him about the head and shoulders. I bit my tongue though, and I didn’t say anything sarcastic or rude. I did ask him why he referred me for an obesity program, and instead of recognizing his error, he decided to defend himself and give me a lecture of the importance of keeping my weight down “if I might receive” a heart transplant in the future. He also informed me that because of the type of heart failure I have (restrictive cardiomyopathy) I may consider seeking out palliative care in the future to help me be more comfortable as it progresses since cardiomyopathy patients rarely get heart transplants.

It took all the will power I had to just smile and sign the discharge papers and get out of there before I hurt the poor young doctor. He had a snooty British accent, the bedside manner of a rodent, and was so baby faced I doubt he’s even started shaving yet! Needless to say he is very young, and not the most experienced doctor, so I spared him the severe tongue lashing. I decided to leave it for the next grouchy lady to cross his path, and may the Lord be with him!

Maybe I Should Have Been a Comedian

My primary care physician asked me this week if I am keeping notes or a journal about my never ending medical journey. Why? Because every time I see him I make his face hurt from laughing. I’m his one in a million patient he says, he’ll never in his career have another patient quite like me; not only in personality, but medical complexity. I make him use his brain I guess.

I try not to bother him much because he’s not a specialist and in so many ways my medical issues are way out of his depth, but he tries. So, when I do see him I try to keep it to things I believe he can help me with and I always come with a list. This visit my list was basically…I can’t breathe, my back hurts and my ass aches! It’s true…and because I put it just that way to him he couldn’t help but laugh, which was kind of the point I guess.

If we can’t laugh about all of this, what do we do? It seems so ridiculous to me; how can all of this be happening at the SAME TIME?

Over a month ago he had me do a simple sleep study (at home) and the results were a little shocking. Although it didn’t show that I had a sleep apnea, it did reveal that not only does my heart beat dangerously slow (like 30 bpm) but my oxygenation dips into the low 70%. So, my heart isn’t beating enough and my brain isn’t getting enough oxygen. So, a more serious sleep study was ordered. What’s the catch, what makes this all so ridiculous? From the date he put in the order to the sleep lab it took them four weeks to contact me to schedule an appointment which I would have to wait another six weeks for. From the order to the actual appointment will be 10 weeks! 10 weeks of me not getting enough oxygen in my sleep and my heart beating too slow. Sad, but laughable, no?

Now we’ll move on to my back. I have been experiencing extreme back pain from between my shoulder blades to my tail bone for over a year. They’ve x-rayed me up one side and down the other, they physical therapied me, then they cyclobenzaprined me, when all that didn’t work they tramadolled me, and in the end none of it worked! An MRI was ordered from my T5 to my coccyx, should be simple enough, right? Well, apparently they can’t do all that in a single MRI and my insurance only allows me to have one MRI a day, so the whole thing has been split in to three separate MRI’s on three consecutive days. How ridiculous, and what a colossal waste of time, but who am I to question the medical expertise of my insurance company. Again, laughable, and I have to admit I rolled my eyes a few times when I was on the phone with the woman who scheduled it all. Of course none of it’s her fault so I was polite, however I had a few choice thoughts about my insurance company.

Lastly, the one you were really waiting with bated breath to hear about. Why does her ass ache? Well, if you haven’t had the pleasure of reading my entry about my adventures with Desitin, I encourage you to get caught up on the subject. I take a lot of medication and every one says…may cause diarrhea or constipation…well I have the pleasure of getting the former not the latter. In addition, I’m a mother of three children and there are things that happen to parts of your body with pregnancy that can only be repaired surgically. Well, I had that surgery many years ago, but you wouldn’t know it now; the hemorrhoids are a real. There is no amount of over the counter remedies what will assist me with this problem and quite frankly…I’m tired of my ass aching! Referral number three, the surgeon, thankfully I only have to wait three weeks for that lovely visit. I really can’t wait to have a face to face conversation with someone about my nether regions. It’s was so comfortable and pleasant the first time, NOT!

Again, can I say this is all laughable? How is this happening to me? Sometimes I could swear I’m living in some kind of twisted dream that I will wake up from eventually. Maybe when I do I’ll be 28 again! Man wouldn’t that be a blast…

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!