Living with Heart Failure

Patient Perspective

Doctor’s Orders for Being Lost in a Low-Sodium Diet

**(My cardiologist asked if I would write an article for the Journal of the American College of Cardiology. This article was written about four months ago (January 2018) and was just published for the May Journal. I am unable to share the actual article due to copyright issues, but I can post the text on my personal sites.

I had an appointment with my cardiologist since the writing of this article and she was happy that I had actually gained some weight and she told me I didn’t have to stress so much regarding my fluid intake). 

My name is Regina, and I have heart failure. That sounds like I’ve just been to a support group meeting because I’ve just been diagnosed with heart failure or “heart disease.” Now what? That couldn’t be farther from the truth, so let’s start my introduction over. My name is Regina. I have always been and still am short and petite. I am not a “typical” heart patient; I am only 49 years old, I weigh 111 pounds; I am a thin white woman who exercises and who strives constantly to maintain balanced and healthy eating habits.

Before my heart failure, I was faced with a lot of medical challenges: multiple congenital abnormalities with a very distinct murmur (I love watching new doctors listen to it), ventricular septal defect, an imperforate anus with rectovaginal fistula (in which an artificial implantable artificial sphincter muscle device was implanted as a young adult), and a variation of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. I am a complicated patient—someone walking on a tightrope. One bad decision or medicine can tip me off that tightrope.

From my open-heart surgery in second grade until becoming a young professional in 1998, I was blessed with no complications and not burdened with any medications. The only restrictions were set by me. I did a lot, including riding roller coasters, which I loved. Through my family’s love, prayers, and support and having a team of great doctors, I managed to live a somewhat normal life. It can be challenging to find a someone who loves you and will accept all the medical baggage brought along, but John found me, and we were married in 1994.

We later adopted 2 children. One morning not long after our son’s birth, I became very dizzy, prompting a pulmonic valvuloplasty, which came totally out of the blue.

Years passed again without any real restrictions or daily medication. However, in 2006, I had a bout of ascites. We thought for sure it was my heart, but a series of tests determined that I had ovarian cancer. Up until that point, I had felt very comfortable with my heart and bowel issues—and my trusted doctors.

The Riley Hospital doctors who managed care of my heart and colon and rectal conditions during my childhood were wonderful quarterbacks. Dr. Roger Hurwitz, cardiologist, and Dr. Jay Grosfeld, CRS, were wonderful instructors for new interns, as well as being very respected as masters in their fields. I can remember feeling like a “star” as the doctors and interns crowded into the examination room and discussed my prognosis and sometimes held a quick question-and-answer session. Now, as an adult, I would meet several new types of doctors. I always accepted that it would be my heart that would eventually send me to Heaven. Now, there was a risk of something much worse. After I underwent exploratory surgery, no cancer was detected; and after recovering from that surgery, the fluid continued to build. Finally, my heart did show up as the culprit.

A dual-chamber insertable cardioverter defibrillator was implanted by Dr. Benzy Padanilam. He introduced me to Dr. Mary Walsh, who specializes in heart failure. I thought, “I don’t really have ‘heart failure?’ I didn’t feel that bad. It wasn’t like I was on my last breath or anything. We spoke about what that really meant, and again she echoed the “low sodium” diet plan. I said, “Okay, I’ll stop adding salt to my foods.” However, this is not how it works, as you know. I tried to watch my eating habits more carefully but continued to eat out frequently, not worrying about anything. Anyway I felt that my condition was a result of stress.

Unfortunately, in the summer of 2015, my ascites came back, and I went to see Dr. Walsh. I explained that I didn’t understand that, even though I had been working out and watching what I ate, I still gained fluid and continued to lose muscle tone. My stomach looked like I was going to have a baby. I missed several days of work. It became very noticeable that I had started to see these new heart doctors a little too often. Dr. Walsh ordered that I be admitted for tests and a paracentesis again. I always feel terrible after a fluid drain, while the organs moved back to their original locations. It feels like when I had just gotten off the “Son of Beast” roller coaster at Kings Island when I was younger. When it was okay to go home, I was 10 pounds lighter! The doctors felt it best that I remain on a medical leave until basically the end of October, to rest and allow the changes they had made in the medicine routine to stabilize.

Often, I have felt as if God calls me to go on a “retreat” with Him during my stay at the hospital and now on “medical leave.” I have time to reflect on my life and where I have failed to trust Him and be like Him. Back home, during the day, I began digging a bit deeper into this low-sodium thing. I sat in my kitchen planning meals, using the new food scale I bought, listening to quiet music. I also tried to take naps on the deck in the warm sun. It was nice, but I like to be busy, so this has settled me down a bit. I had also taken time to attend morning Mass, and I began exercising more consistently.

Also, in this new found spare time, I continued to update my medical life in what I call my “Operators Manual.” This manual has grown and comes in handy as a reference when meeting new doctors or having the cumbersome task of filling out medical history forms every time I turn around, it seems. It also seems somewhat amazing when I look back through the manual to recap my own life and try to remember what I’ve been through as I write stories as well as facts.

I was informed that I now had “low sodium” in my blood. And, I had all the classic symptoms of weakness, fatigue, muscle cramps, and irritability. When I initially started my low-sodium diet, I had been on an intensive diuretic agent every day to assist in the fluid loss—this ended up complicating the balance of my electrolytes. Come to find out, eating a low-sodium diet has nothing to do with having low sodium in your blood! To be honest, this is complicated to learn, understand, and explain. (I am still trying to find someone who can explain it to me.)

To combat this new problem, I was put on a “fluid restricted diet.” What? Now, I can only have 48 oz of fluid a day—that includes soup and ice cream, because when ice cream melts, it becomes a fluid. My diet consists now of 1,500 mg of sodium per day and 48 oz of fluid a day. What else could I be restricted from now?

During a follow-up meeting with Dr. Walsh, she told me straight out, “Regina, you have right-sided heart failure with ascites. This is just something you will have to learn to accept and manage. It may be due to the congenital heart defects that your heart is now having a hard time keeping up. There is no real “fix” for this, but do keep on doing what you are doing. And, we will keep monitoring you. Just think what you may feel and look like if you weren’t diligent in watching your sodium intake.”

If I abide by orders, taking into account my other medical challenges, my daily menu looks awful and complicated:

  • 1,500 mg of sodium;
  • 48 oz. of fluid;
  • No (or very little) vitamin K because of the Coumadin I take;
  • Calcium intake, because now I also have osteoporosis;
  • Potassium intake, because I’ve been known to go too low or too high;
  • High fiber for bowel issues;
  • Taking Imodium and eating foods that reduce the risk of incontinence issues.

So, my goal is to maintain the 1,500- to 2,000-mg sodium allowance, which, I’m thinking, I may then not have to worry so much about the fluid, although, I’d have to say I think the 48 oz of fluid is the hardest to overcome at this point. I think about my typical day, which consists of 8 oz of water, which would include taking my medicines in the morning and evening; 8 oz of orange juice to get my potassium; 8 oz of milk for calcium; 12 oz of Coke (because I like Coke!); and 8 oz. of water (because water is better for you). And that only leaves approximately 4 oz for wine or a drink in the evening, at which point, why bother? I’m not necessarily a “woe-is-me” person. I have accepted what I was dealt, with faith. I can think of many people who have it a lot worse than I do.

Recently I have downloaded several apps that help me track different aspects of my medical life. My health folder on my iPhone has almost as many apps as my social media folder. All that sounds good, right?

You might be thinking, “She has really gotten on top of it. Good for her. She’s now a ‘star’ patient! If everyone was as diligent as she, we’d be out of a job.” Well, obviously, that isn’t the case, and even for me, who knows better, it’s still hard to remain dedicated. If you looked at my app history today, it would be lacking several days or even weeks. Some of these apps are not very user friendly, especially the sodium-tracking apps I’ve tried.

I began blogging off and on in 2015. I think I started doing it more for me, to continue to document my health history, rather than to keep it private. I’ve always liked to entertain my friends and family with stories from the hospital, starting all the way back in second grade. Adding a bit of humor makes it a lot less scary for everyone. I’ve never felt the need to be a part of a support group (I’ve had such a strong network), but recently I’ve gotten involved with WomenHeart, and it does make me happy to help others get through tough times.

At any rate, living with heart failure really isn’t what defines who I am. It’s just a part of what makes me who I am. I have been blessed over and over with great family and friends, who have been there to listen and learn from my experiences during all phases of my life. I’m not doing bad for a 49-year-old, 111-lb, 4-foot 10-inch woman who wants to feel like she’s still 26, and has an internal body like a senior citizen, which also now includes osteoporosis.

I have at least a few more stories to tell, hopefully, when I’m a lot older. Life is too short not to laugh through the struggles. Recently, I asked my 16-yearold daughter what it was like to live with a mom with heart failure. Quick wit that she is, her answer was,

“It sucks. But, don’t say that; people will think I’m heartless.”

 

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Doctor’s Orders for Lost in Low Sodium Diet…

It’s been a while since my last post. Quite frankly, I’ve been extremely frustrated and haven’t wanted to admit that it’s not all about the Low Sodium Diet that I did so well earlier in the year losing the fluid that had accumulated.

During the Spring I noticed I was gaining fluid weight again. I was tired and missed several days of work. I had been working out at the gym, watching what I was eating, and still gained fluid and continued to lose muscle tone. My stomach looked like I was going to have a baby. I looked good as a pregnant woman. I kept my cardiologist informed of what was happening and finally she agreed with my request for having my stomach drained. The way I understand it, when you have your fluid drained, it pulls out a lot of protein too. My husband and I felt that like this was the best treatment. I couldn’t go on feeling and looking like I did.

So, off we went to the hospital with the next couple of days. I was very proud of my husband, he stayed the whole time I was being drained. It was actually pretty cool. They inserted a giant needle and then insert a suction tube which is attached to a pump. Once the pump is turned on it sucks the fluid into the first cylinder and then when that one fills up, it jumps to the next one. I filled up four of these cylinders that equaled about 4 liters or 10-11 pounds. We had a wonderful conversation with the doctor and the tech who performed the procedure.

What a way to lose some weight, right? I went from weighing 111 pounds in the morning to 100 pounds before bed. The recovery period was slightly uncomfortable, but normal, while the stomach organs moved back into their regular locations. I felt like I did when I was younger and got off the “Son of Beast” roller coaster with a friend at King’s Island about 18 years ago. Once we were home from the hospital, I felt really good.

In addition to gaining fluid again during this time, we realized that I had “low sodium” in my blood. I thought, “No wonder, I haven’t been eating much sodium, of course it would be down!” This was also causing me to be tired and showing the following official symptoms:

  • weakness
  • fatigue
  • muscle cramps
  • irritability

When I started my low-sodium diet, I also had been on an intensive diuretic everyday to assist in the fluid loss. However, this ended up complicating the balance of my electrolytes. Come to find out, eating a low sodium diet has nothing to do with having low sodium in your blood. To be honest, this is a very complicated to learn, understand, and explain. I am still trying to find someone who can really explain it to me.

What Does It Mean to Have Low Blood Sodium?*

Low blood sodium is also known as hyponatremia. Sodium is an electrolyte. It helps maintain the balance of water in and around your cells. Sodium is important for proper muscle and nerve function. It also keeps your blood pressure stable.

Low blood sodium occurs when water and sodium are out of balance. Either there is too much water or too little sodium.

To combat this new problem, I was put on a “fluid restricted diet.” What? Now, I can only consume 48 oz, of fluid a day. That would include ice cream because it when it melts, it becomes a fluid. My diet consisted now of 1,500 mg of sodium per day and 48 oz. of fluid a day. What else could I be restricted on now?

In spite of all of these changes and continuing to work out, the fluid started coming back! Another fluid drain was out of the question with my heart failure cardiologist, but I still felt like my electrophysiologist could maybe help. A couple of years ago, I had my pacemaker/defibrillator replaced because the battery died. My heart rate had been set at 70 bmp and I felt really good most of the time. My new devise was set at 50  bmp because I normally pace at 60 bmp. Keep in mind that I am also in A-Fib all the time now. Basically, what that means is that when my regular heart rate falls below 50 bmp the pacemaker kicks in at paces me at 50 until I get back to my regular rate. The report indicated that this was happening about 32% of the time. I just had this feeling that if I was pacing higher I’d feel better.

After another appointment, my electrophysiologist agreed to compromise and set me at 65 bmp. We had this changed in the middle of June. In addition, I am taking the more intensive diuretic two days a week and have started working with a personal trainer to gain muscle tone back again. I have actually felt really pretty good since these changes.

I met with my heart failure doctor a few weeks ago and she asked me how my “Blog” was coming along. I was honest and told her I had quit because I was mad that I was such a cheerleader for the new low sodium diet when actually it seemed as though it just didn’t really matter.

She told me straight out, “Regina, you have right-sided heart failure with ascites. This is just something you will have to learn to accept and manage. There is no real “fix” for this but doing to keep on doing what you are doing. And, we will keep monitoring you. Just think what you may feel and look like if you weren’t diligent on watching your sodium intake.”

She then proceeded to say, “This is why you need to keep writing your blog. People need to hear that it’s not always going to be great. You can still help people. And that it is easy for your cardiologist to tell patients like you that they just have to deal with it, because she doesn’t have to. You can also, say that she is a ‘smart ass’ sometimes.”

So, I’m revived and back to blogging. My goal is still the same. I am a cheerleader for a low sodium diet no matter if you are a heart patient or not. It’s important for everyone!

Sources:

* http://www.healthline.com/health/hyponatremia#Overview1

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Changing the Way I Chip Away at a Low Sodium Diet

I believe it’s common knowledge to everyone of you “My Facebook Friends” and friends in general that we connect “Face to Face” or “Phone to Phone” that I was born with Congenital Heart Problems, as well as a wide range of other medical issues.

For the most part of my younger life I spent a lot of time in the hospital and then went through a great period ofnot having any heart issues up until 2006 when I was diagnosed with Congestive Heart Failure (CHF) and since then many other labels have been placed on my Medical History: Cardiomyopathy, Chronic A-Fib, Value Issues, ICD (Pacemaker, Defibrillator) patient, restricted to a Low Sodium Diet (under 2,000 – The Dietary Guidelines for Americans recommend limiting sodium to less than 2,300 mg a day — or 1,500 mg if you’re age 51 or older, or if you have high blood pressure, diabetes or chronic kidney disease.)

Over the past several years, the Low Sodium Diet and Exercise have been echoed from my cardiologist and I have chipped away little by little to get to the habit of living on a Low Sodium diet.

This past visit to the Cardiologist we spoke of more risky methods to help improve my quality of life and I didn’t like what I was hearing. I didn’t want a new heart, I am attached to my old one, so what could I do when I heard her say, Limit your sodium to 1,500 per day? Chip a lot different to make more of an impact.

I bought a kitchen scale to actually weigh the food such as meats and fish, new measuring cups to really get a serving size that matches the serving size on the label. (BTW – 1/4 cup M&M’s plain has about 25mg of sodium).

Since my appointment on January 12, I haven’t eaten out one time. I have eaten more fruits and raw vegetables than ever and haven’t had a potato chip. (I use to count out how many chips I could have for 90 mg) but I might do that a couple of times a day and not eat because I was still bloated and got full because of all the fluid I was retaining. Therefore, I was losing weight, but I still looked like I might have a baby due soon. I was uncomfortable and hard to live with.

As you can also see from my FB posts I’ve been working on Cardiovascular exercises. The picture is the proof that actually listening to the doctor and eating fresh fruits and vegetables are your medicine and they can help you stay fit. I basically lost around 8-9 pounds and my stomach looks so much better and I feel better too.

Today I had a Heart Cath to check the pressures of my valves and to look at the heart function. I am extremely happy to report that the doctor told me that the pressures were actually better than the last Heart Cath and whatever I’m doing, keep doing it!

Since I was on medicine to help with the water retention and potassium supplements that are necessary with taking diuretics, I was told to suspend two out the three diuretics and go off the Potassium because it was actually to high (mangos, grapefruit, and kiwi are high in Potassium).

I’m starting to study to understand how, as Dr. Oz puts it, “Our food is our medicine.” In my research thus far, I have been very fascinated about all the benefits of the food we eat that are considered “healthy.”

I’m going to try and help myself learn as much as I can about fruits first and then begin with learning about vegetables. If you want to learn with me, my intent is to write about these foods and the benefits it will have on your body and maybe we all can learn a thing or two that we have also heard when we visit our doctors, either with our children, our parents, our spouses, and alone: I want to be able to answer truthfully YES to the basic questions:

Are you eating your fruits and vegetables?
Are you exercising?
Are you getting proper rest?

Apples will be first on my list – “An apple a day, keeps the doctor away!”

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