Getting through the hard days

What do you do when you are having a hard day? Do you find yourself more emotional, snapping at everyone, crying frequently, using more tobacco or alcohol, eating more comfort foods? The ups and downs are a normal part of living with a chronic health condition. The challenge is to not allow the bad days to promote behaviors that can worsen your health or your relationships. Some days symptoms are more prevalent than others, those are the days to listen to your body and take it easy. Not every day is a record-setting day.

On the bad days consider:

• What good things are happening in my life?
• Is the situation really as bad as I perceive it?
• What can I try to make things better?
• Who can I talk to who will understand?
• What is most important for me right now?

Bad days cause us to re-evaluate what is important on this day. What can I do without having symptoms? Can I limit what I had planned to do. Accept the limitations, and don’t ruminate on what you can’t get done. Listen to your bodies needs. Does it need a healthy meal, a rest, a light walk, meditation, a listening ear? Who is your support person? A spouse, a clergy, another person who lives with chronic illness, a support group, social media sites? Admitting limitations to family and asking for help are difficult for many but unless you verbalize your needs no one knows or is likely to give you the support you need. It is ok to cry to grieve, let it out then let it go. Move on from the frustrations and emotional grief. It will come back, and when it does acknowledge it and move on again.

• Listen to music
• Write a letter
• Take a light walk
• Do something that makes you feel good
• Focus on what truly matters
• Envision a better tomorrow
• Do deep breathing, relaxation or meditation exercises
• Start over
• Call a friend

 

 

 

September is Peripheral Artery Disease awareness month: What Heart Patients Need to Know

Heart patients often have Peripheral Artery Disease

Peripheral Artery Disease also known as PAD is when the arteries in the legs become narrowed or clogged with fatty deposits, or plaque. The buildup of plaque causes the arteries to harden and narrow, which is called atherosclerosis. It is the same process that causes heart disease. It doesn’t just happen in the heart it can occur elsewhere in the body and this is known as PAD.  When leg arteries are hardened and clogged, blood flow to the legs and feet is reduced. Lower-extremity PAD is a serious disease that affects about 8 million Americans. The hardened arteries found in people with PAD also put them at risk for hardening and narrowing of the arteries to the kidneys and the brain. That is why people with  heart disease are at risk for PAD, kidney disease and stroke.

How do I know if I have PAD?

Working in cardiac rehabilitation I would often encounter patients who ended up having peripheral artery disease and were unaware of it.  Some of the tell tale signs would be pain with walking, or complaining of wooden feeling in the legs when walking. Fatigue, tiredness or pain in your legs, thighs or buttocks that always happens when you walk but that goes away when you rest.  This discomfort often goes away within two to five minutes of rest. This is a  very classic symptom.  Another classic symptom is night pain in legs, calves, feet or toes that wakes you up. Many patients describe having to sit at the edge of the bed and dangle their feet or get up and walk to relieve the discomfort. Be alert as well for slow to heal wounds in the legs or feet, as the poor blood supply limits wound healing is another clue to peripheral artery disease. Changes in the color of your legs, or the temperature – often the limb feels cold, looks whitish or bluish.

Smoking and PAD

If  you are a heart patient and a smoker  you are very likely to have PAD.  Smoking is  the number one cause of PAD.  Studies show that smoking even half a pack of cigarettes per day may increase the risk of having PAD by 30 to 50 percent. If you do smoke it is imperative that you quit as soon as possible. A cardiologist I worked with would tell his patients if you are diabetic and smoke you will lose a limb to PAD it is a matter of when not if.

Diabetes and PAD

The other big risk factor is diabetes. Diabetes makes the arteries narrow and hard thus restricting blood flow. People with diabetes are at higher risk for having PAD.  Some studies have found that one out of three people with diabetes over age 50 has PAD, and PAD is even more common in African Americans and Hispanics who have diabetes.  The challenge of course with this is that if blood flow is reduced wounds do not heal properly, and limbs can become necrotic and require amputations. A challenge with diabetes is that often the patients with PAD will not get the classic leg pain symptoms. For this reason any diabetic with risk factors for PAD should have his/her legs checked regularly.

Testing for PAD

Testing for PAD includes palpating for pulses in the foot and ankle region. If pulses are not easily felt then the next step is a Doppler ABI – Ankle Brachial Index measurement. This is a painless test in which the blood pressure of the arms is compared to the blood pressures in the lower leg. If there is a large difference this suggests PAD.  Other imaging including CT scans may be done. The next step is a segmental MRA -magnetic resonance angiography,- like a heart catheterization  but looking at the vasculature below the heart. 

Treatment of PAD

Treatment is similar to the heart. If the disease is in the small vessels it is better to intervene with risk factor modification and exercise. Yes it hurts to walk but paradoxically walking is the best activity to help re route the blocked blood supply. The more a person walks the more likely they will develop what is known as collateral arteries around the blockage. Other risk factor modification issues include stopping smoking, lowering cholesterol, being physically active, and keeping blood pressure in control.

If the blockage is in primary arteries of the legs or kidneys then interventions include angioplasty, stenting and/or bypassing the blockages. These are all very similar to the interventions done for atherosclerosis of the heart. Once an intervention is done  it is important to understand the issue is not fixed. Like a car it will need continual maintenance. There is high probability that is will continue to develop further blockages even if you modify all the risk factors and walk regularly.

Exercise and PAD

Many Cardiac Rehabilitation programs will also offer a PAD walking program as well. This usually involves walking on a treadmill or riding a bike 5 days per week and working your way up to a one hour walk. Most patients who experience pain while walking think that sound impossible to walk one hour. The walking program is a graduated program in which one works their way up to one hour, and usually it isn’t a fast walk, but may include walking a grade. Most patients find it quite do able once started. Many find the support given through the rehabilitation programs makes all the difference, as they wouldn’t do it on their own, and the education received while attending gives them the understanding needed to cope with this chronic condition.

 From the Vascular Disease Foundation WHY WALK?

Walking can make a real difference for people with peripheral artery disease (PAD). Recent studies show that for many people with PAD, a structured walking program is one of the best treatments for reducing leg pain or cramps (claudication) when walking. In fact, studies show that over time a structured walking program is often more effective and can work better than medicine or surgery in helping people with PAD walk longer and further without having to stop due to pain.

A regular walking program will:

• Let you do more and stay active.
• Reduce stress and help you relax.
• Help you control your blood glucose, blood pressure, cholesterol, and body weight.
• Improve muscle tone.
• Lower your chances of having a heart attack or stroke.
• Give you peace of mind that you are taking care of your health.

For more information visit

http://vasculardisease.org/

ICD’s: Resources, Decision Making, and What to Know

An ICD is an implantable cardiac defibrillator. They are used for people who are high risk sudden cardiac death due to heart arrhythmias  of  ventricular tachycardia or ventricular fibrillation. They are often implanted as a preventative measure when the heart has a poor pumping ability as this makes one prone to arrhythmias. If the ejection fraction (pumping ability) is 30% or less and doesn’t show signs of improving your healthcare provider may consider implanting one.

Special care should be placed not to put excessive strain on the shoulder, arm and torso area where the ICD is implanted. Doing so may damage the ICD or the leads going from the unit to the patient’s heart. For this reason strength training with heavy repetitive weights is often discouraged. The exercises which would potentially damage the leads involves exercises with the arms overhead, such as a Military or shoulder press, seated fly’s,overhead triceps press. By heavy weights we are talking about weights upwards of 100 lbs or more with repeated repetitions and multiple sets. The wiring goes under the first rib, repeated bending and stress to the wires in this area can damage the leads. If your work involves this type of activity be sure to discuss this first with your cardiologist.

Exercise Advice:

• Exercise with a friend or family member who is familiar with your condition and knows what to do in the event of an emergency.

• If you exercise at high intensities, you should make sure you have a specific guideline from your cardiologist about your heart rate range. If the heart rate is too high the ICD may sense it as Ventricular Tachycardia. Wearing a heart rate monitor can help you to watch your heart rate range and avoid exercises that spike the heart rate up into the threshold in which the defibrillator is programmed to respond. Your Cardiologist can adjust your ICD settings to recognize the difference between a normal increase in heart rate from exercise and that associated with an abnormal heart rate or rhythm. You should include a low-level 5 to 10 minute warm-up and cool-down phase for aerobic exercise (i.e., walking, cycling) to allow for a slow and steady increase in heart rate.

• The ICD can be affected by magnetic or electrical fields. You should avoid this and opt for something simpler such as the sum of skinfolds. Heart rate monitors are unlikely to cause any problems in the gym setting. Avoid Bio electric Impedance devices which are used to measure body fat.

Decision Making:

I came across a New York Times article “A Heart Quandry”  recently with the following information. It is something to consider for anyone with an ICD.         http://newoldage.blogs.nytimes.com/2012/06/07/a-heart-quandary/

Going against strong headwinds in his own community of heart specialists, Dr. Kramer emphasizes three important issues that come about when older patients with ICDs face battery depletion.

First, he asks heart doctors to re-evaluate whether the patient still benefits from the ICD. Perhaps, the original heart problem has improved?

Second, he points out that a patient’s experience living with the device may have changed their mind about keeping it active. Perhaps, a patient with inappropriate shocks no longer wants the device?

Third, since the original implant, a patient may have changed their goals of care. Many patients no longer desire life-sustaining shocks—for whatever reason. It’s their choice; but they aren’t often asked.

You may wonder why such obviousness isn’t the norm?

It’s because our healthcare system imparts significant barriers. Dr. Kramer nicely explains two important hurdles. One is that healthcare in the US is fragmented, especially for the infirmed and elderly. Patients may have many doctors, and care is often not well-coordinated. This means, an installer, a proceduralist like me, is left discussing end-of-life care with patients immediately before ICD surgery. That’s not good. I am married to a hospice doctor, so I sort of know how to manage these conversations. This is not the norm for procedure-oriented heart doctors. The other barrier to getting the elderly the best care is our system’s misguided incentives. In our current fee-for-service system, I am rewarded for doing, not discussing not doing. In fact, not doing stuff is very risky—both legally and professionally (ie. loss of referrals.)

Finally, Dr. Kramer and his colleagues call for heart doctors to take the lead in starting “the conversation” with ICD patients. He wants us to share the decision of using invasive, potentially dangerous or ineffective care with the patient. He also asks the scientific community to study the outcomes of patients who undergo elective ICD generator changes. These should not be controversial recommendations.

It’s a huge mistake to equate this kind of smart thinking to rationing. Aligning evidence-based care, especially potentially burdensome surgery in elderly patients, with the goals of the patient is not rationing.  It’s moral, ethical and obvious.

Resources:

There are issues with ICD that patients struggle with. These include the comfort of the ICD, the cosmetic appearance,the stress of having it fire, frequency of battery replacement, leads wearing out, and it working appropriately. I have included a few great resources to help you in living with an ICD.

                     http://www.suddencardiacarrest.org/aws/SCAA/pt/sp/home_page

      https://www.inspire.com/groups/sudden-cardiac-arrest-association/topics/living-with-an-icd/

       http://www.bostonscientific.com/lifebeat-online/live/icd-patients.html

Is my heart disease cured?

Many patients come through their heart procedures and feel they are cured. Unfortunately for most, heart disease is a chronic progressive disorder of the arteries in which deposits of cholesterol, calcium, and abnormal cells (that is, plaques) build up on the inner lining of the arteries.  Heart disease usually progressively deteriorates over time, whether due to normal bodily wear or lifestyle choices such as exercise or eating habits. This is a hard concept to grasp, and it doesn’t mean it is a death sentence either.

You can do everything right and still have further heart issues.

When patients struggle with this, I point out doing everything right may be why they survived, as approximately 50% of people do not survive their first heart attack.    It is so important for each person to know their body’s signs and symptoms and not ignore them. We don’t really know what makes coronary artery disease aggressive, there seems to be several factors. These factors include inflammation, c- reactive proteins, genetics, lifestyle to name a few. Some patients will have multiple issues for years requiring frequent interventions and then be fine for many years before having another issue. On average coronary artery bypass  grafts  10 years out will be 50% blocked. Some patients will go 20-30 years before needing another intervention, yet others may not even go a week or month before having symptoms. Thirty percent of open heart surgery patients will continue to have angina symptoms after surgery. The drug eluding stents have  much lower rates of re-stenosis than the bare metal stents which average 25-30% restenosis rates, but in both cases the vessels often continue to develop blockages in other locations in the artery. If the bare metal stents are going to re-stenos the usually do so in the first 3-6 months.  It is vital to stay on the platelet inhibitors – Plavix (clopidogrel) as prescribed to prevent complications.

Accepting the fact that you will have further heart disease is important.

Be on the lookout for new symptoms, for changes in energy patterns, note if you are becoming less active due to fatigue. Keep your risk factors in the best control possible. Try to get blood pressure, blood sugar, cholesterol numbers to national guidelines. Exercise regularly. Eat a rainbow of color in fresh fruits and vegetables each day. Don’t let stress effect your health, manage your stress as best as possible, consider counseling.  Don’t live in fear, live life to its fullest!!

Play hard.         Enjoy your families.

 Embrace life.          Do something rewarding every day.

Laugh.     Mentor others.   Love

.

My Little Heart

This heart of mine has been with me my entire life.  It beat for me before I even had

awareness, while my brain was only a rudimentary organ with

 little, but the basic body functions. It raced the day I was born and drew my first

breath. It swelled when I saw my mother leaning over my crib. It beat

strong and steady as I played and grew.

. 
It fell in love and was broken as a teenager and was filled to capacity

as I held my baby son in my arms. My heart was there, every second of my life.

It did its job and allowed me to do mine. I rarely even thought about it.
Then one day, it began to fail. It would race, it would skip and it would

flutter uselessly as my vision dimmed and the world tilted precariously. I could

no longer keep up with the schedule I set for myself. It was letting me

down and I was angry. I didn’t like it very much. It was like an old friend

that betrays your confidence and you can never trust them again.
There were hospitalizations, there were too many doctor visits to count,

yet still my heart continued to let me down at such a wonderful point in my life.

The medical field was baffled and it seemed they were insinuating that

this was somehow all my fault, like I didn’t WANT to get well. Oh, but I did. I

would look at my husband and son sleeping at night and pry that I would

be there in the morning to see them awake just one more time. My heart

and I were losing hope.
Finally, after many trial and errors with medications, some of

which left me vomiting for hours or unable to find the energy

to pull up my socks, they

implanted a pacemaker/defibrillator. I remember wakening from

the surgery, feeling like they had stuffed something the size of a Chevrolet

under the skin just below my shoulder. It hurt to move, but I turned my

head to see my husband sitting beside my bed. The pain etched in his face

was so much greater than any pain I felt from the surgery. I suddenly

realized what a toll all this had taken on him. I blamed my heart and

hated it for what it had done.

We went home the next day and I tried to pick up the scrambled pieces

of my life. I still felt terrible and each time the pacemaker corrected, I

retched to the point of vomiting. If I rode in the car and the road was

bumpy, my heart raced uncontrollably. I couldn’t listen to my hard

rock music too loud or the pacemaker kept tune with the beat.

Was this the improvement I was hoping for?

When I went back for the 6 week check on my ICD, they finally realized

that something was wrong. Two of the wires had not implanted properly.

One was coiled next to a valve and the other had slipped so it was

triggering my diaphragm along with my heart.
Back into surgery I went. I was really angry now, not at the doctors, not at

the situation, but at my heart. I didn’t sleep at all that night for the anger

that I felt within me. Morning came and as soon as I walked down the hall,

I knew this was different. I actually did feel better. With several adjustments

over the next few months, I began to feel like I was going to live. More

importantly

 I WANTED to live.
I call February 11, my rebirthday, that is the day that they implanted

the ICD, but my true rebirthday came weeks later when I decided that

the rest of my life was going to be different than before. I chose to get

everything I could out of every day. Carpe Dieum doesn’t even come close

to what I do every morning. Not only did I start living my life to the fullest,

but dragged everyone else with me. Some weren’t very willing, some even

dropped by the wayside, but I was too busy living to go back and sit with them.
What started with cardiac rehabilitation, moved through aerobics,

hula hoops, belly dance, tai chi, and now kung Fu and Karate. I never sit still.

I don’t have time.

I’m absolutely, irrevocably in love with life.

For the most part, my heart lets me do pretty much what I want.

It reminds me that it is there and not exactly able to do all the things I want.

There are times, it actually lets me down, like when we were running relays in

Kenpo class and I passed out. Oh I was really pissed at my heart that night.

It has humiliated me.

There are days when I just don’t have the energy I’d like to. I just can

do everything I want. That’s when I really hate my heart. I blame it for holding

me back, like the albatross around my neck.

In the past year or so, I have embarked on a new journey of introspection.

I became a Buddhist and began meditating. I started searching out other ways

of managing my health in addition to Western medicine and exercise.

Acupuncture was probably the biggest surprise. I went for treatment on my

shoulder, hoping to delay surgery on the bone spurs in my joint.

My practicitioner was vaguely aware of my heart problem and placed a few needles

that she thought might be beneficial. I’m not sure it did a lot for my shoulder,

but as I lay on the table listening to soft flute music, I realized that my

pacemaker had gone into sleep mode. Good heavens,

it doesn’t even do that when I’m ASLEEP!
I felt wonderful, I felt relaxed. I went to Kung Fu that night and felt

as if I could do anything. (unfortunately, I discovered that I STILL was

unable to do the flying butterfly kick, but I’m working on it).

I knew that for me, acupuncture was going to be a routine

part of my self-care.
One thing with acupuncture, when you are laying there, feeling like

a pincushion and staring at the cieling, you have a lot of time to think.

And think I did. I would meditate while lying on the table. It was warm,

it was cozy, my mind would drift and thoughts and emotions would drift

through my head. I would dutifully address each of them and let them go.

Then one day that gentle little meditative voice whispered in my ear.”

How can you show compassion to others if you cannot feel it for yourself?”
Whoa, that thought wasn’t even addressed, the notion was tossed out like

an old cat food can. The next week it was back. “You have to love yourself, to

love others”
“Nope! Get out of my head please. I don’t want to think about that.”
“Forgive yourself. Forgive your body. Fill yourself with love.”
Each time, I angrily pulsed away the thoughts. I really didn’t want

to love my body. It wasn’t what I wanted. Elle McPherson’s body?

That I could love.

And what the hell did I have to forgive anyway?

What had I ever done to my body or it to me?
Then one particular day, when I went in for an extra treatment because my

heart was not behaving in the manner I thought it should. (In other words,

it wasn’t operating on a 20 year old athlete level) An new voice chimed in.
“I’m trying. I’m doing the best that I can.” I know this sounds insane and

could get me committed in at least 4 countries, but I knew it was my heart

talking to me. It was attempting to tell me that it was trying to meet my

expectations. It wasn’t the traitor that I viewed it as. It loved me and was doing

its damndest to keep up with me.
To say I was flooded with emotion is an understatement. Tears rolled down

my cheeks and soaked the pillow as I realized what I had been expecting of my

body. My heart had gotten sick and was broken and fixed the best it could be.

Even with its limitations, it pumped and pushed and beat every second of

every day. It kept me alive to run , to play, to love and I treated it with distain.

My heart had not failed me. I had failed it.                                                                                                                                                                
That day, I embraced my heart. I saw it as this wonderful brave ally,

who stood by me in sickness and in health. I saw how hard it worked

to allow me to see my dreams. I thanked it for allowing me to have

these extra years, to see my son married, to kiss my husband under

the stars, to learn to live again.

I loved it for its courage and perseverance. I gave it peace.
We came out of that room a team, that day. It, promising to do its best

and I, promising to listen more closely to what it needed. Just like any couple,

we have our little disagreements, like that skydiving thing, but we’re

working on it.
How many of us, as heart survivors, have forgiven our hearts?

Who among us still carries the anger and resentment of failure?

Who treats our hearts as a mere organ and not the center of our beings?

I live because my heart beats. I love because my heart beats. I hold all the

compassion for the world, because I now have compassion for myself.

I love this little heart of mine.

Life

Life

Something we take for granted in our youth

What we welcome when we become parents

Flashes before our eyes when health is compromised

Embraced when we survive

What do I want do with with this saved life?

It is important people know this about my life______________

I am most proud of this______________

If I could change something in my life it would be ________________

To make my life better I plan to do this _____________ today

People who have made an impact on my life are___________ and I thank them

My health changed my life, it made it better by______________, even though I thought it would be worse

I will live my life to the fullest