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.
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.
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.
I’d be 46 years old and getting braces 😀
It’s true, this time next week I’ll be sporting some clear dental braces. Like traditional metal braces these are simply clear and all that’s really visible is the wire that runs threw them; unless you get real close they aren’t easy to see.
My mouth is a cautionary tale of phobias, poor dental work, neglect, and smoking!
I didn’t see a dentist for the first time until I was 18. Unfortunately, due to an extremely barbaric and cruel dental visit my mother had as a child, she was petrified of dentists. So, as kids we were just told to brush our teeth and that was it. I don’t blame my mom at all, I’m sure there are thousands of people of her generation that share the same phobia of dentists because of similar experiences. She was a small child, in the hands of a bad dentist!
Luckily not seeing a dentist the first 18 years of my life wasn’t as tragic as it could have been. The sad thing is, that due to some very poor dental work by, count them, three dentists, in three different states, I lost two teeth because of improper root canals. Then I had two teeth (side by side) literally sliver up into the root that had to be pulled…I was eating a Pringle, beware!
One permanent bridge later, some serious jaw wasting, and years of smoking, I’m now in the position I’m in now. The two teeth I broke eating the Pringle can’t be fixed with anything but implants, but I need a bone graft first. I can’t have a bone graft while I’m on a heart transplant list so those will have to wait. The last one which was a bad root canal then an extraction has so much jaw bone wasting and has such a large gap, I can’t have a bridge. I need to straighten my teeth first to try and close the gap enough I can have a long term temporary bridge. After I have a heart transplant and have healed, I can have bone grafts to fix the areas with wasting and have implants put in.
The upside is that I’ve managed to remove years of smoke stain from my teeth with some good old over the counter methods. I’ve whitened them enough the dentist doesn’t think I need to go any farther with it. And, in the end (about 18 months) I’ll have straight teeth for the first time in my life.
I feel like a fool that I didn’t do this years ago, but when you have children, they come first and mom is further down the list of priorities. I have a wonderful dentist now who is very competent and I trust. He recommended I do this about 8 years ago, but I still have teenagers in the house. Who could afford braces when the monkeys needed new shoes every three months because they grew like weeds. Oh well, so be it. It’s being handled now, maybe a little late, but better than never. I’d like to keep the teeth I have left for as long as possible!
My advice to you…brush often, floss frequently, and find a good dentist; it’s worth it! Oh, and don’t eat Pringles!
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.