Three-month Check-up

[KimC]

Hi, everyone.

I saw my LOCAL cardio this AM for my three-month check-up. He was curious to know if the study med (Eplerenone) and ACE (Lisinopril) were helping my primary symptom, recurring angina. I said yes, if only a little. The meds definitely resolved my symptoms at rest.

He said endothelial dysfunction has no cure, and that it's an indicator of active atherosclerosis that could cause large artery stenosis. (My coronary arteries are clear, only the small vessels are blocked which causes mild symptoms of heart failure). My aortic murmur is still 2+.

He listened to my heart then tried to repress a long sigh. Of course, I took this as an indicator of impending doom! Afterwards he checked my ankles for swelling.

I told him that two weeks ago, (after my sister's loss and our move to a new house) I felt like I had a "flare-up." I couldn't breathe laying down, had trouble walking up stairs, etc. He said stress and exertion can definitely exacerbate my symptoms. He then asked if I felt the same way today, and I said no. He said if neither rest nor meds resolve my symptoms, then I'm to call him. Has anyone heard their cardio say something like this without being overly direct?

Can heart failure go from mild to severe quickly, and how should I prepare? Is there a difference between "valve heart failure," "heart disease heart failure" symptoms and the Real Thing???

I always do this after cardio appointments ... call it the "worry fog." I analyze, ask questions then finally, get on with my life!

Thanks.

Blessings,

 

[gadgetman]

Kim,

Not to worry you, but, my Cardio of 13 years had the first serious (we usually joked around before exam) look on his face when he came in following my latest Echo in December. I had gone from moderate to severe (a little less of a jump than your case) in a short period of time. Things sort of took off from there (see my "signature"). Not to say your case will be the same (each one of us are different--look at the growing waiting room) but mine was a sudden change (for me at least).

Stress and over exertion sometimes brings a temporary change in the body. Just do like he suggest, if you don't feel better let him know. He is in the best position to help you make the decisions.

I suffered from the "head in the sand" syndrome for a long time when it came to my heart. I guess I figured what I didn't know wouldn't worry me.

Hope you get to feeling better soon.

May God Bless,

Danny

 

[Nancy]

Watching Joe go through every aspect, and I mean EVERY, of congestive heart failure, I can say for a fact that it can develop faster than one would think, and then with proper treatment, it can become mild again.

The trick for Joe is to keep the fluid from building up at all. It is no small task, for him because not only do his heart problems cause CHF, but the pulmonary hypertension makes it much worse. He is in constant touch with his cardiologist when things get unstable for extra diuresis instructions. He has much blood-work during the instability, looking for any kidney problems or potassium levels which are abnormal, also his liver chems become abnormal with large amounts of fluid retention (5 pounds or more).

As mentioned by others, when the fluid builds it becomes even more difficult to shed it with the normal or even higher dose of Lasix, orally. If that is the case then going to the hospital is what has to happen for IV Lasix which works much better. Often the addition of Zaroxolyn orally at home, and under the direction of the cardiologist will work.

This is what we do to keep things from getting out of control.

He weighs himself each morning at the same time before breakfast without clothing. If there is a gain of 2-3 pounds overnight, then it indicates fluid retention. Or a gain of 5 pounds over a week's time. Then a call to the cardiologist is warranted.

He eats a highly restricted sodium free diet, 500 mg or less, just barely enough to cover the body's needs for sodium, and much less than the American Heart Association recommends. All this is known by his normal doctors and cardiologist. And his sodium level is checked along with the other blood-work to make sure that doesn't get too low.

We rarely go out to eat. It's a sacrifice. We will be giving it a try at a restaurant where we know the owner, and who has promised to do her very best to give him a sodium free meal.

Congestive Heart Failure is a manageable problem as long as the person is willing to comply and is willing to have a very close working relationship with the cardiologist.

I suspect that your cardiologist wants you to call with changes asap because then they are more easily corrected instead of waiting until 10 pounds of fluid develops. Then it would be off to the races, and into the hospital, probably.

I wouldn't want you to restrict your diet severely like Joe does, unless your doctor is OK with it. It might not be necessary in your situation. It might be possible for good control with the right dose of diuretic.

But it would be a very good idea to start weighing yourself each morning and keeping a log. This also helps you to see if certain things you eat or drink have any effect on the fluid problem. If you see things developing then call the card. and get an opinion. I would also call if there are any changes to your breathing, which would indicate fluid accumulation in your lungs.

I also check Joe's ankles and legs for any signs of fluid, and his stomach as well, since he carries fluid there sometimes.

Just don't let things get too far afield, it can and does fluctuate but I believe you can manage it with the help of your cardiologist. Maybe not curable, but manageable as long as you're willing to do it.

 

[McCln]

Kimc

Kimc

I agree also about stress can cause the body to react. You have suffered a loss and moved within two weeks, lots of changes in short period of time. I get just a bit stressed and it affects my glucose, I am a type 2 diabetic besides the heart problem. So I agree and do as he suggested, rest and relax and hope it works. Good luck.

 

[KimC]

Thank you ...

How many years can a young, otherwise healthy person live with heart failure?

I'm 38 years old. I'm also smart. I know that heart failure is ultimately progressive, and that my doctor(s) don't like discouraging my sense of hope.

It has taken me a couple of years to accept my new "limits." Before I thought a valve replacement would reverse the damage, or that the symptoms would go away. Now I know that's not the case, and I'm pretty much OK with that.

What I'd like to hear is what kind of steps beyond the medical, what kind of planning, what kind of life should I be living ...

You all know that popular country tune, "Live like you were dying ..." OK, I can't go sky diving, mountain climbing ... but I can choose to live a more active life of travel, etc. I don't feel like I'm dying, but I know the odds are not in my favour to live a long life.

I hate talking about this stuff. I know it's depressing. I'm sorry.

For those of you who live with heart failure, how has it changed your perspective? Do you take more or fewer risks?

Does anyone know what I'm getting at?

 

[Phyllis]

Kim,
I haven't had to live with heart failure and do not know anyone as young as you that has, but none of us know what tomorrow will bring and the old adage that "life is not a dress rehearsal" is a good one. Live every day to the fullest and don't let the little things in life get to you! We wish you the best and many more years of enjoying the best life has to offer!

 

[Nancy]

Kim-

No one has a crystal ball to see into the future, but as I've mentioned before, Joe has had CHF for MANY years.

He'll be 74 on June 12. And he is not in the best of health for many, many reasons.

However, his CHF is controllable and most of the time it is mild or non-existant. This is because he stays on top of it, every day.

You are much younger and healthier.

Your chances of living well, even with your CHF are good.

You can do a lot yourself to keep it under control, and the other very important thing is to have good and close care from your cardiologist, and don't be afraid to call him with any problems.

I say, live your life and enjoy every day and your lovely family, while taking the very best care of yourself as you possibly can.

 

[KimC]

I have tears in my eyes, thank you, Nancy. I agree with everything you said.

When I'm "compliant," I feel almost normal. When I rebel and live like I don't have a chronic illness, I pay for it and worst of all, my children pay for it as I lay in bed recovering. I'm getting over the denial and choosing to eat a heart-healthy diet, etc. I now have a "hard-as-nails" nutritionist.

Don't get the wrong idea, I'm not a partier. But I do enjoy eating out. We live in a very active social community.

My husband and I went to see our pastor's wife who said we both need to be more assertive. Meaning, when I'm feeling symptomatic, even if my relatives don't understand why Dad's doing the lion's share of the dishes, etc., I need to retreat into the other room and communicate why. This is so hard for me. I want to do everything myself. Call it pride or arrogance. I don't like talking about how I feel physically. It makes me feel weak.

The irony is that it would show more strength to stand up for my long-term health with the primary goal to live a long life for my family, as well as finish my book! (I'm writing a novel which is completely unrelated to health!)

Many, many thanks and much love --

 

[PJmomrunner]

Hi Kim:

I so strongly empathize with you and wish I could help. Dealing with major medical challenges is not what any of us envisioned for ourselves and leaves us stuck "between a rock and a hard place," with no easy way out.

Regarding diet, my husband has beginning CAD and was advised by his cardiologist to adhere to the Ornish diet. He claims it is the only diet proven to reverse CAD. We started on Ornish in July when my husband's total cholesterol was 180 (with the help of Lipitor 20 mg/day). His levels were checked again in October and his total cholesterol was 130. His HDL is high and his LDL is low--I don't recall where they are exactly, but within super-strict guidelines. The diet is pretty extreme--we eat no cholesterol, limit other fats to 20g/day, include a serving of soy everyday and eat whole grains as much as possible. My husband is a corporate exec. He travels more than most pilots--mostly international and he eats out a lot when he is home too.

My purpose in relating all this is to reassure you that it is manageable. (Whether you do DASH or Mediterranean or whatever) We are "foodies." We have always loved food and fine wines, so I understand the sort of "mourning" for normalcy that you are feeling. You'll just find a different normal. We don't eat out as much as we used to, but one of our easiest meals to eat out is pizza. We love a local restaurant's woodfired pizza--we just order it with no cheese and no oil brushed on. I do also watch sodium (he doesn't have to ), so I just make sure I've had none or very little for the rest of the day. (If I were organized enough, I could probably call ahead and request a no salt dough.) Eating at friends' homes is tougher, but we have a light meal of leftovers or something before we leave, or we bring an acceptable side dish (our friends know our situation) and we do fine.

Cooking for the kids is my biggest challenge. My 12 year old son is pretty open to whatever weird thing I have cooked, but my 14 year old daughter STILL eats only toddler food (rather sophisticated versions of pasta and pizza or chicken strips) Thankfully, she loves to cook and doesn't mind cooking her own meals several times a week. I just don't have the energy to cook two meals and I can't expect a kid who gags on vegetables to become a vegetarian! She is, however cognizant of the fat and salt she eats and consequently makes good choices most of the time. In a way I feel badly that my kids are in a position that causes them to think about what they eat, but on the other hand they probably will reap life-long benefits.

It took me so long to post to you because I was out searching the web for some encouraging statistics about heart failure and longevity. I stopped myself before I got too far, but I get the impression that it can be completely controlled with attention to diet/lifestyle and medical control of BP and blood chemistry. Control has to be the key to longevity. And even if you've found out that a VR won't cure you (when the time comes) it's got to help, right?

As for the dishes...my husband has always done all the dishes when I have prepared a feast for the extended family. (It's the only time he does them! Makes him look like the saintly husband!) Someone always pitches in and he enjoys hangin' with his dad or whoever. AND it is absolutely important that your children see daddy help out around the house...with whatever needs to be done...it shows them what it means to be part of a family--everyone's an important part of the process. And communicating about how you're feeling doesn't have to be overt, it can just be, "Honey, can you get the dishes? I need to put my feet up." or even, better, "Kim, why don't you go visit with Nana? I'll get the dishes."

I get it. You're worried about yourself (which is a new thing, I'm guessing, 'cuz you're a young mother whose job it is to take care of everyone else ), which you don't want to be doing, and you're concerned that you are imposing your restrictions on everyone else, and you are accustomed to working hard and excelling and you don't want to feel "lame", and besides you're too young to BE lame and it's just not fair and you hate whiners and here you are feeling like one!!! I do understand. And I'm sorry. And I have tears in my eyes too.

As time goes on it will not seem sooo overwhelming. You'll master a different aspect of the life changes you implement and it will all settle down and be okay.

Take care. Hugs to you.

P. J.

I have tears in my eyes, thank you, Nancy. I agree with everything you said.

When I'm "compliant," I feel almost normal. When I rebel and live like I don't have a chronic illness, I pay for it and worst of all, my children pay for it as I lay in bed recovering. I'm getting over the denial and choosing to eat a heart-healthy diet, etc. I now have a "hard-as-nails" nutritionist.

Don't get the wrong idea, I'm not a partier. But I do enjoy eating out. We live in a very active social community.

My husband and I went to see our pastor's wife who said we both need to be more assertive. Meaning, when I'm feeling symptomatic, even if my relatives don't understand why Dad's doing the lion's share of the dishes, etc., I need to retreat into the other room and communicate why. This is so hard for me. I want to do everything myself. Call it pride or arrogance. I don't like talking about how I feel physically. It makes me feel weak.

The irony is that it would show more strength to stand up for my long-term health with the primary goal to live a long life for my family, as well as finish my book! (I'm writing a novel which is completely unrelated to health!)

Many, many thanks and much love --

 

[Nancy]

Kim-

Once you get over the fact that you will have to modify your lifestyle some, you'll be feeling better and better for longer and longer periods of time.

Certainly, you can go out to eat, just make up a list of the least likely things to cause problems, I've been trying to do that for Joe. He could have grilled steak, chops, even fish, as long as they don't salt it. He could have a baked potato, even with sour cream and chives. He could have a salad with oil and vinegar and spices. He could have any vegetables as long as they don't have salt added. He could have sorbet, ice cream (most of it is not too bad in the basic flavors), even have some kind of topping like chocolate sauce which has little sodium.

Just stay away from saucy things. And if there is a sauce that you are just dying for, then have it served on the side, and limit yourself to a tablespoon of it. BUT no soy sauce or dastardly stuff like that.

Most restaurants today are used to accommodating their customers with low sodium choices.

So get yourself on an even keel and you will be as strong and healthy as you can possibly be, and will have a long and fulfilling life.

BIG reality check--but a good one.

Joe was told that he would die at age 50, here he is 24 years later, with all his problems.

 

[KimC]

A Hundred Years' War?

A Hundred Years' War?

Nancy and PJ,

First, I've shared your posts with my spouse who was moved by your empathy and advice. To understand the significance of his reaction is to know him ...

We both worked at AOL in the early days and during the .com boom, poo-pooing Internet "community" as a wasteland. (Yes, we WERE arrogant). Thanks to Hank and other's initiatives such as VR.com, we've discovered how invaluable Internet communities are.

Steve Case knew this early on, and created the AOL mission:

To build a global medium as central to people's lives as the telephone or television ... and even more valuable.

AOL like Al Gore didn't invent the Internet. But I believe AOL made it popular, or accessible to people who were initially intimidated by the WWW without AOL's "walled garden."

What I'm saying is neither here nor there in terms of the topic at hand. I only mention it because I'm seeing my husband "convert" to the value of cyber community. Most of all, he and I are beyond grateful for your time and words of wisdom -- and we don't even "know" you!

Being diagnosed with heart disease is a Reality Check: No going back! I'm reading Ian McEwan's new novel, Saturday, and in it the protagonist says while musing about his teenage son:

"Against his own inclination, he adapting, the way patients eventually do to their sudden loss of sight or use of their limbs. No going back. The nineties are looking like an innocent decade, and who would have thought that at the time? Now we breathe a different air ... the New York attacks precipitated a global crisis that would, if we were lucky, take a hundred years to resolve. If we were lucky ... A Hundred Years' War."

Perhaps the "war" I'm fighting is to adapt. To not let my new boundaries change anything in terms of loving and living life. That is the objective right now, and my limitations are mild in comparison to others on this board. We're all fighting our own battles.

Much love and thanks,

 

[Marguerite53]

Hi, Kim

Hi, Kim

It's all about connections, then, isn't it? I mean, we are all connecting here with a shared purpose. Your husband is connecting with you as you weave the tapestry of your lives together. Your extended family and friends are connecting as they watch from a little greater distance as your lives play out and interchange with theirs.

Sometimes we don't have all the "bars" lit up on the connection. Sometimes you have to move around and change something to get a better connection. Don't you do that? Kind of dance around, tilt your head, move to a window or whatever, to get a better cell phone connection? Maybe if you just thought of it as a dance. The music has changed, but it's still playing. You still have time to dance. Just dance.

With 3 small kids, you amaze me. Mine, as I've said, are grown. I would have been terrified at your age. Your grace and determination are genuinely to be appreciated.

Hang in there! Now we will all be wondering about your novel!!! Good luck with it and do perservere.

Marguerite

 

[geebee]

Those of us who like to help others also must remember there are others who want to help us. If we do not allow them to do so, they will not feel the satisfaction one gets from helping.

Kim, please learn to accept the help from your family. I am sure your children want to participate in all aspects of your life and that includes the "downs" as well as the "ups". Your health issues create enough limitations, try not to put limitations on your family's love.

I had a recent serious family issue come up with my brother. I realize now, if we had communicated more, I might have been able to prevent the outcome. The one good thing to come from it is the fact that we really talk now and do not hold anything back. I will never again avoid helping or being helped.

I have also been writing a novel for the past couple of years. I do not know if I will ever finish it because I have made the decision that the journey is the important part. I do not want the writing to become a "job" where I pressure myself with a deadline. I do truly hope I will live to see it completed and I wish the same for you.

I firmly believe God does not send us challenges we cannot meet. Maybe your challenge is to provide your family and friends with the satisfaction of knowing they were able to help you cope with your illness.

Sorry if I am sounding "preachy". I wish you peace.

 

[Teresa UK]

Kim, I just wanted to say - be confident that you will find your own unique way through all this, even if you're not sure at the moment what your strategy is going to be. For what it's worth, I'd like to share my sister's experience, as her attitude to life was a revelation. (It's a bit long-winded, but I'll be as brief as I can and still make the point!) Maria was diagnosed with terminal cancer at age 17 and given at most one year to live. She went through so many phases after being told this - it was an emotional and physical roller-coaster for her. Having said that, her overall initial reaction was to "accept" the inevitable and she was a sweet, uncomplaining, "strong" young woman who carried on life without making a fuss, without whining. We never got the impression she was in denial as such, she just seemed to have found an inner strength to be very pragmatic and "sensible". Our mother was/is severely disabled by multiple sclerosis and everyone agreed Maria was being "absolutely fantastic" in how she coped with everything happening in her life, and "sparing" our mother too much heartache. Gradually Maria's health deteriorated to such an extent that finally I was able to absolutely insist on her being more "selfish". She learnt to rest when she needed rest, to lean on people when she needed to, to opt out of anything she felt was too much for her. She slept when she wanted, she insisted on fresh and nutritious food, she called the doctor whenever she felt the need for his attention. If she felt like ignoring everyone for hours on end, she did. She moulded her environment/friends/family in a thousand little ways. Basically, she did what she felt she needed to do - to keep her sanity, to keep up her strength, whatever. Gradually, oh so gradually, the colour came back to her cheeks, her strength picked up, she seemed to find a new lease of life. She seemed to find pleasure in life again, despite physical limitations. She was enjoying what was left of her life. We were so, so proud of her determination to do what she felt necessary to survive as long as she could. Did we want her to get back to her previous "martyr-like" personality because it was easier for us? Of course not. Did we begrudge her any of it? Of course not. Did we find her a pain at times? Of course we did! (sorry, got to be honest.) This phase was a real gift to those who loved her - we didn't have to worry that we weren't doing enough - we had no guilt that we were not doing the best for her - she made sure we were doing exactly what she needed. Once Maria had decided what was best for HER, her quality of life improved and, whilst not being "cured" her health took an upward turn. She subsequently survived another 17 years (yes, 17 years) and I would definitely, definitely say that in addition to the power of prayer, her own attitude to her situation dramatically extended her life. Sorry for such a long posting, but wanted you to hear about Maria and to conside my genuine belief that being a bit more selfish helps you to live longer and certainly helps those around you to cope better. Thinking of you. Teresa.

 

[KimC]

Marguerite, Gina and Teresa:

To quote the American comedian Mike Myers, "I am not worthy! I am not worthy!"

I'm wavering between accepting that I need the loving support of my family, and rebelling. Call it denial or pride. But I'm almost there. Your "stories" give me strength.

Writing also heals me. I may never finish or publish my novel either. But I love writing ... I look forward to it every day.

My beloved primary care doctor, (who had a near fatal heart attack five years ago) told me that the greatest gift he can give is HOPE. He diagnosed me first, and has been agressive in my treatment. I pray that everyone reading this can find that kind of doctor. One who listens, trusts and acts in your favour. He probably saved or prolonged my life.

I live in the land of the beautiful people where sixteen-year-old girls drive convertible Mercedes to school. Everyone exercises, has a hefty nest egg and attends church with the same fevor as the gym. It's a dichotomy. I love and hate this small island in the South. For the most part, the community lives in the 1960's or 50's when women had their "place." I've fought the medical establishment and won to some degree. (No one wins with heart disease). But I've challenged the mainstream and reformed at least some doctors' way of thinking about young women with "atypical" symptoms. They're listening now, or at least pretend to be.

Reformation was never my intention. Valdiation, OK. But validation with reason: medical, clinical reasoning.

My local cardio recently congratulated me on my perseverence, grit and grace. Through this experience I've learned that even doctors are human. Before this experience, I believed in doctors the way that some people believed in God or their parents. I'm embarrassed to admit this.

Have a great week-end everyone.

 

[Karlynn]

I'm wavering between accepting that I need the loving support of my family, and rebelling. Call it denial or pride. But I'm almost there. Your "stories" give me strength.

Kim,
I've just been following along as this thread has progressed. As I've mentioned to you before, having been my sickest when my children were little, I have such empathy for your journey. What I've read is you gradually working your way into a life that recognizes your limits, but lives them to the fullest. It's a change that may seem like resignation at times, but really is a way of conquering the disease that seeks to put you down. It's like driving a stick-shift car. You downshift the car into 2nd to go up a hill, not a fast speed, but it gives you the power you need for the climb. Then when you're on the straight-away you shift into 4,5 or 6 and hit the gas. Sometimes you just have to downshift in order to gain energy.

Accept help from your family. It's not only a gift they give you, it's a gift you give them. My mother-in-law wouldn't let me help with anything. When she has us for dinner she won't let me help serve, or clean up, or do anything. Finally after about 20 years of this (I'm a slow learner) I said to her in the most loving way possible. "Mom, you're not being self-less, you're being self-ish." I had to explain to her that she was not giving me the gift of feeling good about helping her out. I think we are so afraid of being seen as only "takers" that we don't realize that we sometimes have to be takers in order for other to be able to share their gift of giving.

I'm sure your family would love to take care of some of the things that waste the energy (mental and physical) that is better used with your young family.

Best wishes!