Category: The Heart

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!

Four Years

Amazing that exactly four years ago today I was sitting in my hematologists office at Mayo Clinic in Rochester, MN and he told me I had Immunoglobulin Light Chain Amyloidosis (AL), aka, Primary Amyloidosis. Only four years ago and here I sit in the hospital in Utah healing from the heart transplant I needed because of that disease. Seems like such a tiny blip in my life and yet it feels like it consumed so much of me. This date is always an emotional day for me though; it was the day I was shown my mortality, something I never expected to have to face at 42 years old. Four years later and my mortality and I are well acquainted and much more comfortable with each other. Now I have been gifted another chance to live. The first life line I received was a stem cell transplant, and now another in the form of a heart. Grateful isn’t a strong enough word for what I feel. I’m not lucky, I don’t believe in luck, and I’m not sure if I deserve it yet, but I will, blessed, for sure, and thankful beyond words.

The Food

I don’t know anyone who’s ever said hospital food is good, especially if you’re on a heart healthy diet. Thankfully I was mindful enough to bring my Low Salt (a salt substitute) so I could add some flavor to my food. I’d be lying if I didn’t say the diet is a little annoying, primarily because, although I am in a cardiovascular ICU, my cardiac issues are not due to lifestyle or diet. I already eat a well balanced diet at home, and I do watch my salt intake, but the rest of it I don’t really need.

The menu is interesting to say the least and a lot of it isn’t even food I would cook myself, with the exception of the cheese omelet. I make myself omelets all the time…egg white omelets with mozzarella cheese inside with salsa over the top, and a half a piece of toast. It’s simple, tastes good, and the cheese and salsa make it so I don’t need to use salt to season my eggs. Here I get a whole egg omelet with cheese on top that would actually require a knife to cut, if I ate it. Sliced potatoes, only because there aren’t any other options…like TOAST, and this morning I got an orange that was going rotten. When I asked for a less rotten orange I was told they were out of season so they were all pretty much like that. So I guess everyone in the hospital is getting half rotten oranges today.

When my doctor did rounds this morning he asked how things were going and I mentioned I wasn’t a fan of the food and his first response was…you could order out. He doesn’t mind if I do it once a week and just told me to coordinate it with my nurse; I love this man! I was also told I could even have Frozen Lemonade from Sonic. Now I just need to bribe a resident to bring me one! You have to love a doctor that can show a little flexibility, especially with a patient who’s sitting in the hospital…until.

Status 1A

I know it’s been awhile since I’ve shared much, but I do I have a good reason. I’m currently sitting in the cardiovascular ICU at University Hospital in Salt Lake City Utah listed Status 1A for heart transplant!


Maybe I should give you a little of the back story. For a little over a year now I haven’t been very happy with the level of care I had been receiving from the Heart & Lung Transplant Center at Mayo Clinic in Rochester Minnesota. I use the term “care” loosely since they really weren’t doing anything other than dragging me out there every three months for check-ups that would result in nothing. I would often come with questions and/or concerns, but they were rarely addressed, and sometimes ignored completely. They have quite a few transplant cardiologists there and I’ve seen most of them, and that is a large part of the problem. When using a team approach to treat your patients, especially complicated patients, the team shouldn’t be in double digit numbers. Unfortunately, I rarely saw the same doctor twice, and not all the doctors even agreed about the severity of my heart failure. So, I sat, stagnant, not getting the help I needed for the increasingly obvious progression of my heart failure.

My last visit was in June, and the doctor I saw felt that my needs would be better served at Mayo Clinic in Phoenix Arizona. This was an opinion that was shared by several on the “team,” but no one seemed to think to pick up the phone and call Phoenix and ask them to review my case. This time we insisted it be done and we were assured it would be. After waiting few weeks I inquired about the referral to Phoenix and I was told the doctor was out of town. Only one of 23 transplant cardiologists can pick up the phone and do it? I waited a few more weeks, and the transplant coordinator stopped taking my calls, and shoved off her responsibility to a poor scheduler. I was told they would let me know when the call was made. Again, trying to be patient, I waited a few more weeks and called again. This time, the scheduler, who was now acting as an intermediary between me and the nurse coordinator, told me the call had been made and something had been faxed. That day I received a message from the doctor himself saying he made the call. More waiting…

Well…maybe not more waiting, I got impatient and asked my local cardiologist if he would make some referrals to other transplant centers I had been researching, while I was trying to wait patiently for the whole Rochester/Phoenix thing to get figured out. I was going to continue to keep Phoenix an option, but I wasn’t going to put all my eggs in one basket. I wanted to be seen someplace else for another opinion. Thankfully it didn’t take long to narrow it down to the University of Utah and in that time I called Phoenix myself and got the ball rolling.

My first evaluation was scheduled with Utah for the 10th thru the 13th of September. I had a few appointments before I was to see the transplant cardiologist who specializes in Amyloidosis. Of course I was skeptical, come on! If he was an expert I’d be the judge of that! I knew the second he walked in the room that this was a whole different kind of “team” approach in Utah. The cardiologist said he had been studying my medical records for a month <GASP!> and he was able to pull things out of my history that he could only know if he had done just that…studied my medical records. Beyond the fact he passed the “Amyloidosis Expert” test he did’t even know he was taking, he walked in the room with a plan. I knew, instantly, I was in the right place.

After an intensive review of my records the cardiologist felt that something needed to be done sooner rather than later, and that based on just the records he reviewed from Mayo said I should already be in the hospital and my heart was in very bad shape. Knowing I was in the right place and with the right doctor 10 days after returning home to Casper from Utah I was back in Utah to be admitted into the hospital.

Monday morning I went straight to the cath lab to have a Swan-Ganz line put in, also known as a pulmonary artery catheter. It is the “IV” that is used to administer the medication that helps my heart beat better. Not only did I get my swan line, and admitted into the ICU, but I also got the call that my transplant status was upgraded from Status 2 to Status 1A. Monday was a little bit of an exciting day.

Now we wait, wait for a heart, today is only day four. The team seems to think I could get an offer pretty quick, we’ll have to see.

Four days and counting…

And yes, I called Phoenix right away, they were already starting to schedule appointments for my evaluation there, and told them I needed to cancel; I wouldn’t be traveling to Arizona any time soon.

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.