Category: The Healing

Amyloidosis Speakers Bureau

I have the distinct pleasure of being a member of the Amyloidosis Speakers Bureau, a part of Mackenzie’s Mission to bring awareness to not only the general public but the medical community about Amyloidosis. I have my first speaking engagement in September at the University of Illinois College of Medicine Rockford. I’ll be speaking to a group of about 100 to 120 second year medical students about my journey from diagnosis through treatment. Below is my short bio that goes out to medical schools where I might speak. This is the ultra short, “down and dirty,” Readers Digest version, and of course you have to know the title of my bio…

A Fist Full of Pills

My name is Rayna and I’m a 47 year-old female with primary amyloidosis (AL) with cardiac involvement that is currently in remission.

I exhibited 9 of the 12 symptoms of primary amyloidosis (AL) initially: arrhythmia, diarrhea, tingling/numbness in hands/feet, weight loss, edema, feeling full quickly, shortness of breath, and enlarged tongue.

In addition, I was also experiencing: chronic atrial fibrillation, tachycardia, and long Q-T syndrome.

I started by seeing my primary care physician in 2012 at the age of 40 for an annual check-up. I was referred to a local cardiologist because my blood pressure was slightly elevated and my heart rate appeared to be irregular and too fast. Over 19 months I saw a local cardiologist as well as an electrophysiologist from Salt Lake City (Intermountain Medical Center). During that time, I started being treated for congestive heart failure and had the first of two cardiac ablations for chronic AFib. The treatment by both doctors was ultimately ineffective and I was referred to Mayo Clinic in Rochester, Minnesota.

I visited Mayo Clinic twice before I received a definitive diagnosis. I saw several doctors, most notably I was seen by cardiology and hematology, who both immediately suspected Amyloidosis. During my visits to Mayo Clinic I did 24-hour urine tests, a fat pad biopsy, a bone marrow biopsy, a right heart catheterization, several blood tests as well as numerous ECG’s, echocardiograms, and ultrasounds. The echocardiograms showed a thickening of my left atrium, which then led to having a heart biopsy that confirmed amyloid buildup. The Congo red stain confirmed primary amyloidosis with cardiac involvement (I was 42 years old). All other tests showed no other organ involvement; however, nervous system involvement was suspected due to a tremor I developed before diagnosis that I still have today. As an aside, at the time of my diagnosis the staging system for AL had not been established; however, if we were to go back and look at the progression of my symptoms, I was in late Stage 4 of the disease before I started receiving treatment.

Under the guidance of my hematologist at Mayo Clinic I received four rounds (16 weeks) of the CyBorD treatment with a local oncologist, however my light chains continued to rise. The doctors felt that I had two choices…stem cell transplant with a 20% chance of survival or do nothing and I would die within six months. Needless to say, a 20% chance of survival was still better than 0%. I then received Melphalan and an autologous stem cell transplant at the Colorado Blood Cancer Institute (CBCI) in April 2015 (I was 43 years old). At that time, I not only survived, but I achieved complete hematological remission and have not received any maintenance treatment since.

The healing time after the stem cell transplant took approximately 18 months, during which my congestive heart failure and AFib continued to get worse. I had a second cardiac ablation that almost completely resolved my AFib. In 2016 at the age of 44 I was referred to the Heart & Lung Transplant Department at Mayo Clinic for heart transplant consideration. In August of 2017 I was listed for transplant. After 427 days and transferring to a new a transplant center, I received a new heart in October 2018 at the University of Utah.

I’m currently 47 years old, have been in remission since April 2015, and am healing from a heart transplant.

Understandably, due to the nature of the disease and the lack of knowledge among general cardiologists, I was frustrated with the time it took to get a diagnosis. That being said, my cardiologist never gave up looking for answers and when he exhausted his knowledge base, he referred me to a facility that could offer me more than he could. I was also extremely frustrated with the medication used during the period before my diagnosis. Many of the common drugs used for congestive heart failure, AFib, arrhythmia, tachycardia, and edema did not work for me. We can’t know if the reason the medication didn’t relieve some of my symptoms was because of the AL or because I’m female, but it was frustrating none the less to constantly have to deal with side effects and the ineffectiveness of the medications during that time.

Lastly, what I can’t stress enough, is doctors need to learn how to say, “I don’t know” and do the appropriate follow-up to either find the answer or find someone who has the answer. Giving vague, non-answers is beyond frustrating when you’re facing a terminal disease.

Anyone who would like to see photos of my native heart can click here. Of course if you’re squeamish, I’d skip it!

Write Something Today

I started using  a Full Focus Planner, and I put on my daily list to “write something” the last three days in a row. Monday and Tuesday I deferred it to the next day, but today I was determined to get thru my list. A lot has happened since the last time I wrote something.

I had my 22nd heart cath and my biopsy came back with no rejection! All of my labs came back fine and my heart is doing well. The hematologist is still mystified by the bruising I’ve been experiencing for several months. It started before I moved back home and has only gotten worse. They are now looking for genetic forms of anemia. So far I have genetic markers for two, but why would their symptoms show up now and not earlier in my life. For now I’ll just deal with the bruises. They aren’t life threatening in any way, just an annoyance really. Especially when one shows up in an inconvenient place, like my face.

I’m still dancing, only one day a week but it’s a start. I’ve been loving it! Loving it so much that I took the leap and registered for school to get my degree in dance. To get prepared for a heavy schedule of dance classes starting in the fall I hired a personal trainer to get me into shape. So far I’ve been getting my rear end handed to me. I’m taking a Buff Camp five days a week and following a strict meal plan. It’s taken some getting use to, but it’s totally workable. If anything it’s a lot more food than I’m use to eating, but with my increase in activity I need the calories. The next thing I need to start working on is my flexibility and balance. Bother were affected by the lack of mobility while I was sick.

I’ve been trying to get to yoga twice a week. I can’t express how relaxing it’s been and healing. It seems like such a simple thing but it’s been working for me. The challenge is going to be to figure out how to fit weekly yoga with my school schedule, but I’ll cross that bridge when I come to it.

 

Enough

I can’t be responsible for other people’s feelings. All I can do is treat the people around me with dignity and respect and not take it personal if they react in a negative way. I’m not the family counselor, mediator, referee, or general go between. I need the people in my life to start acting more like the adults they are and stop relying on me to help save the day, calm things down, or motivate. I’m not oppose to helping, that’s just in my nature. However, I expect people to learn how to do things themselves after awhile and that’s not happening. I know it’s me; I’m allowing it. The challenge is figuring out where the teaching stops and the enabling starts.

There’s a lot on my plate, more than the people around me know. Not that I have kept them in the dark on purpose, but because it’s just a continuation of me being sick for so long. Yes, my Amyloidosis is in remission, and I had a heart transplant that will extend my life, but I’ve really traded one set of problems for another. Before, I was just trying to survive and keep my heart beating a little bit longer. Now, I have to survive the anti-rejection drugs that have awful side effects, not to mention the handful of other medications I take for various things that still aren’t working like they should be, post-transplant.

I’m not myself yet; I’m carrying a sadness that I haven’t been able to shake. I’m frustrated that my house doesn’t feel like home right now. I’m irritated that some of the people around me aren’t doing their part to be full participants in our family and household. I hate feeling like I always have to be the bad guy to get things done. I’m tired of attitude, entitlement, laziness, and most of all feeling like I’m being taken advantage of. I want to live my life with joy, love and gratitude, but I’m finding it hard to keep focused on that when I feel like the energy around me is trying to derail me.

So, ENOUGH already! It’s time to change my approach, I can’t change the people in my life but I can change me. Not sure where to start but I’ll figure it out…

Apprehensive

After having so many health issues over the last 6+ years I’ve become a bit apprehensive when it comes to seeking out medical treatment when maybe I should. Right now I’m sitting here, no doubt, in denial, that the pain I’ve had in my upper left abdomen will go away if I ignore it long enough. The fact is, it’s getting worse and starting to radiate toward the right side of my abdomen and around to my back. I’d like to tell myself it’s just a pulled muscle or something, but I know it’s not. Who knows what it is, all I know is the thought of having to go to my local hospital scares me to death.

Out here in Wyoming our medical options are limited, not to mention my issues are way above the pay grade of the doctors around here, and I really don’t want to make a trip to Utah to see my transplant team right now.

What I’d like is to have a single day where I’m pain free. Fighting Amyloidosis and then getting a heart transplant doesn’t come without a little discomfort, but my pain threshold is starting to wane. With that my mood isn’t the greatest and is probably bordering on depression. I feel like I need a break…

To Dance

7 Months Post Transplant!

I can’t even express how amazing it was to be in a dance class this weekend. It’s hard to believe that it’s been just about seven months since my heart transplant and I’m able to do things I haven’t been able to do in more years than I care to count. I can’t thank Wyoming Dance Arts enough for offering an adult class and Aaron Wood for being a wonderful and thoughtful instructor. I’m counting the days until Saturday so I can do it again! Meanwhile I have yoga on Monday and Wednesday; I just need to keep moving and working on my flexibility. More than ever I know what I need to do…DANCE, and dancing is going to help me heal.