Category: The Drugs

50 Pounds! Really?

I wish I could explain what it’s like to have a heart transplant and if I could somehow make your body feel like mine right now, or allow your mind to go to the places mine’s been, I would absolutely share it. I’ve learned so much about myself and about my body in this process, and although it may seem like such a small thing, it’s become one of the most significant and trans-formative.

I’ve written before about my water retention issues, having to take truck loads of diuretics and electrolytes to just keep my body going; to keep my heart beating. It was a brutal balancing act I did for over 2 years. In that time I just kept gradually gaining weight; 5lbs up then 2lbs down. From a a healthy 145lbs to a life threatening 196lbs. I knew the water was there but as it sits it settles in your tissue and it no longer just flushes out of your system with a little diuretic, you have to force it out. All the while keeping your kidney function healthy and not putting yourself in jeopardy of needing a second organ.

Some doctors tried and they could get 10 to 15 off of me to give me a little break from the fluid overload, but it was never really enough. When your fluid overloaded and retaining that kind of water, you can’t breathe. It’s not in your lungs, but in the tissue around your lungs and heart to the point that it feels like someone is always squeezing the air out of you. Simply put, you can’t take a deep breath. Then I had some doctors who just ignored me and did nothing but watch me get bigger and bigger. Finally after being hospitalized at home one last time before travelling to Utah for my transplant I had enough and decided if the doctors couldn’t figure it out I was going to.

Obviously my diet had to change but not in the ways you’d think. Of course I was fluid restricted, and I drastically reduced salt intake, but I had to go beyond that. I had to move to an almost all protein diet, and for this veggie, pasta, rice, lover of cooking all things, this was a hard transition. Really the only things off limits in our house has always been brussels sprouts, liver, quinoa, and snails! I could get my husband and youngest son to try anything else and they would do it with joy, just wondering what suggestions (recipes) I attempted that night. I probably got more joy out of it than they did but they might debate me on that. Back to the point…food is an important part of my life and my family’s and having to make such dramatic changes was difficult but I managed to stretch that 15lb loss into a 25lb loss before getting to Utah.

All and more of that 25lbs I lost before the transplant came back in a very short period of time and has been causing some problems. Even the doctors thought I had walked into the hospital pretty close to what they call my “dry weight”, meaning not carrying any significant water weight. Today, as I continue to lose weight and I watch my body literally change in shape, man were we all WRONG! So wrong…just wrong, wrong, wrong. My real dry weight IS 145lbs and I’ve been packing around 51lbs of water. I’ve lost 29 of them so far so I have 22 left but they are literally falling off in pounds at a time from one day to the next. Yesterday I had no waistline and no hips, today I looked in the mirror and saw my hips for the first time in over 2 years. From there I took one of the deepest breathes I have been able to take in as much time. It was enough to make me weep.

It’s not about my weight, the weight it just the shocking number that brought to mind my ability to fill my lungs in a way I haven’t been able to for a long time. At this rate, given that I have a new heart, and my body is now able to shed the excess water it doesn’t need, I should be able to heal that much faster, get thru cardiac rehab, and get to the boxing gym to start my next career as a bad-ass kick boxer!

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!

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.