Pulmonary Rehab

I have always been active through-out my life -- well, that is pre having been diagnosed with Pulmonary Arterial Hypertension and that was over 11 years ago.

In school I was always active. I was in the high school band, I was sports and this one tickles my phunny bone; as short as I am, I was on the basketball team :o) I raised 4 children (along with my husband) and you all know how that can be, ACTIVE.

Having pulmonary hypertension is a life changing and mentally challenging ordeal. It affects the lungs and the heart -- especially the right side of the heart (although some are lefties). There can be causes for it or there can be no known cause. It is life threatening and although right now there are several therapies/medications available that give us hope, there is no cure.

Last year I had open-heart surgery and although I was to be in the hospital for 5 days to a week, I ended up having complications and was in the hospital for over 10 weeks. This is not a good thing. I did not move and my muscles atrophied. When they say you lose all your muscle tone if you don't move, they are not jesting. I had to learn to walk again, my typing was an unknown language when I attempted to use my computer (at about 4 weeks) and some of my phriends learned to read it, some couldn't; I had trouble feeding myself; and that I eventually worked on and I was able to feed myself. I had the aides open my milk carton and sometimes I thought my picture should be on that milk carton as this was not the me I remember. It was not a good time in my life. I had many phriends praying for me and I know those prayers worked. Thank you all.

About a week before I came home I was taught to walk. I had PT's, RT's and OT's come to my room and reteach me the basics. Like standing, then learning to take a few steps, then taking a few more. My first attempt to walk was 4 steps and that wore me out. By the time I was heading home I could walk about 300' with someone with me and a chair was rolled right along as part of what I called my parade.

I had six weeks of in house rehab when I finally did get home, enough that with a walker I could make it to my door. I was able to do the 3 steps I had to get out of my home -- with help and what I called giving Tom the death grip for those steps. I then had physical therapy for 8 weeks and finally could walk on my own. I told several of my phriends that it felt like I looked like a toddler with a "load" in their diaper when I walked. I may write another epistle later about that challenge but I want to get to the pulmonary rehab.

Although I missed spring while in the hospital and then it took all of summer to learn to walk, I finally did well up until the end of October and the first part of November. I then got pneumonia and I lost a good deal of what I had gained. My PH doctor said if I could get those muscles back and working in my legs I would be able to breathe easier. He wrote a script for pulmonary rehab.

I now go 3 times a week. I use the NuStep (I call it the push-me-pull-you), a Bike Ergometer, an Arm Ergometer, the Treadmill and I finish off with weights, I'm up to 2 lbs. Of course, I start off with a warm-up session and end with cool-down. I am wired up and my bp is taken several times during the session.

When I first started a few weeks back, I was huffing and puffing on the various machines and I used pursed lip breathing to get me through it all. Now they have increased the tension on the machines and extended the time. Some days I still have problems but most days I do well and I use pursed lip breathing less and less. I have noticed that my breathing on the whole is much better but those muscles just want to scream out and say 'JUST WHAT ARE YOU DOING'?

I do believe in exercise, it is so very important for all of us and especially for those with a disability; even if you can just walk an extra few feet at home, an extra trip to the kitchen will help. Once I am through with my rehab I will get back into doing my "home" exercise 3 times a week. I have an exercise "class" by cell phone with several phriends and I am hoping they are anxiously awaiting my return :o}

There is a sign in the rehab room that says: "Eat a potato, don't become one".

Always remember to smile -- it's contagious.

BEEP, BEEP, BEEP

That’s a sound I heard just before daylight the other morning. Even though I was in a deep sleep, that is a sound that will wake me. I have pulmonary arterial hypertension, a life threatening disease that affects both the lungs and the right side of your heart; and I am on an IV medication… a line goes into my chest and directly into my heart where a life-maintaining medication flows through that line and is run by a pump; I am attached to it 24/7/365. When it malfunctions it goes BEEP, BEEP, BEEP.

Upon occasion I have rolled over in bed and kinked that line, shortly thereafter I will hear a BEEP, BEEP, BEEP. I move, check the line and the beeping stops. This time that sound continued. I was thinking ‘did I forget to do my medicine last night’ – there again the pump will set off that alarm to let me know my medication is low. Now I had to get up, put on the lights and check my pump. The reservoir setting indicated that it was in a normal range. I also checked my calendar. HMMM

I checked my dining room table (that is where I mix my medicine)… no sterile drape with empty bottles of medicine, syringes and all the other goodies that go along with mixing and I mix every other day. Nothing, nada. HMMM

BEEP, BEEP, BEEP once again. Hmmm, this time it sounded further away.

I had checked the line, no kinks. I had checked and no leftovers on the dining room table (I mix late and put all those used/empty items in the garbage the next morning). The pump was at a setting it should be; and it’s still beeping. ??? O.K., so apparently it isn’t the pump. I followed the sound and it led me to my bedroom. It wasn’t the alarm clock and then again beep, beep, beep. I was getting closer. Then it dawned on me. I take my cell phone to bed with me (I use it as an alarm clock for my other meds)…. THAT battery was running low so BEEP, BEEP, BEEP!!!!

Just another adventure with having a life threatening disease; knowing enough that I checked everything out and how we learn to cope and how life does go on.

Remember to smile – it’s contagious.

Merle

Agitation

Agitation (noun)
1. Anxiety – nervous anxiety
2. Public campaigning – actions intended to arouse public feeling, interest, or support for or against something.
3. Shaking – vigorous or violent shaking, stirring, or other disturbances of something, especially a liquid

Sunday evening my washing machine decided to give me some grief. A load of wash was put in and I checked later on to put it in the dryer. The clothes were sopping wet. Oh no buckwheat. I reset the dial for final spin and went in the other room. I came back and oh, no buckwheat the clothes were still sopping wet. :o(

Now I’m a fairly sensible person. I tend to have a mechanical mind – pretty good common sense (at times) so I thought, hmm let’s try another cycle. I reset the dial and I heard some water drain, then a click and then the final spin light went on and then went out as quickly, then the “it’s over” light went out. I emptied out some of the clothes thinking maybe the load was off balance.


I ran a full cycle from start to finish. The start worked ok but it would not “agitate”. Hmm, again. I was getting agitated myself and decided to let it go for the evening, Tom would be over the next day and maybe he could figure it out. When you have pulmonary hypertension being stressed out is not a good thing, it can make your heart race and then you get short of breath and other things. I took a deep breath and let it out slowly, I took several deep breaths and let them out slowly. Something else that is helpful when you have pulmonary hypertension. It helps calm one down.

The next day when Tom arrived – the weather was accommodating so he was able to drive in to my place. I explained the situation and we were both hoping it was the “belt”. He took the back off the machine and the belt was in place and whole. He looked at this and tried that, had me set the dial to have it spin while he watched, nothing, zip, zilch. Darn. Sounds like it might be the motor or one of those techie things; with my luck it will be a circuit breaker. I do wish it had a reset switch. Seems nothing is simple lately.

I called Sears as it is a Kenmore, a stackable washer and dryer. I was told it would cost $100 for a repairman to come out just to look, then parts and labor; I said thanks but no thanks. Yellow pages here I come. I found two local repairmen and I called the first who set up an appointment for today. He came; he saw and could not conquer. Darn. He didn’t charge me for the call saying he doesn’t do front loading machines. I then proceeded to call the second repairman. He also asked similar questions, model, problem, etc. I mentioned it being a front loader and the water would fill, it would drain but it wouldn’t spin or…. and I was at a loss for the word I was looking for and the voice on the other end said agitate – I said yes and that I was now getting very agitated with it not working… he chuckled. The earliest he can come out is next Monday – next Monday, what am I to do. Double darn.

Remember to smile -- it's contagious

How the heart is supposed to work

1. Blood that has delivered oxygen to the rest of the body flows into the right atrium
2. The blood then flows from the right atrium into the right ventricle
3. The right ventricle pumps blood to the lungs, where it picks up oxygen
4. This oxygen-rich blood is returned to the left atrium
5. The blood then goes to the left ventricle, which pumps it through the arteries and throughout the body.
6. When the blood needs to renew its supply of oxygen, it returns to the right atrium and the steps are repeated.

I was doing my usual hunt and search today for just your basic information about the dastardly disease known a pulmonary hypertension. I came across the above and when you think about it -- it tells exactly how the cycle or the interference thereof happens when you have pulmonary hypertension. When the blood (step 3) can't get to or through the pulmonary arteries we have TROUBLE.

Research or just searching reminds me of looking up something in a dictionary or encyclopedia. One word leads to another which leads to -- another clue which leads to another clue... just like in "National Treasurer", one of my favorite movies.

Just a little tid bit I found and wanted to share.

Merle
And remember to smile -- it's contagious

Pulmonary Hypertension ~ The Dastardly Disease

I used to be healthy; I used to be strong,
I used to work most all the day long.
And then it hit me without even a clue
I wasn’t quite sure just what I could do.
I saw many doctors and then all those tests
I was diagnosed with IPAH and you know the rest.


Pulmonary Hypertension the dastardly disease
It’s rare with no cure and progression will be
It affects the right side of heart – the lungs big time too
Those arteries get constricted and give out on you.
It’s so complicated; makes it so hard to breathe
With having this dastardly, pulmonary hypertension disease.

Shortness of breath are symptoms at first
And sometimes it feels like your heart just may burst
That weight in your chest, fast heart beats oh my
And walking too fast may just make you cry


Some may get dizzy, or maybe pass out
Some are so tired - what’s that all about
Some cannot work and don’t understand why
With little exertion they falter not fly

Some have edema, that swelling so bad
Retaining that fluid just makes one so sad
Some may have chest pain and may have blue lips
This disease is too serious and needs to be nipped

Some may have Scleroderma, Sleep Apnea or HIV
Lupus, Raynaud’s Phenomenon or maybe COPD
There can be some causes or no cause at all
That’s when our ph doctors need to make the right call


We cut back on salt, smaller portions for meals,
Nutrition’s important and helps us to deal
We deal with life changes a whole new life style
Remember it’s doable – we’ll be here a while.

Many will ask when not feeling too well
How do I cope, how do I dwell
Do not despair and let me just say
There are treatments out now – with more on the way
With hope and with faith we have a good chance
To fight this disease and maybe then dance


Too many doctors; some specialist too
Do not understand what this ph disease can do
Luckily though and I praise God on high
There are ph doctors and nurses who do know the why
They treat us with wisdom and caring that shows
I thank them so much and I just hope they know.


They schedule those testings they start off real slow
An echo and blood work and others you know
A six minute walk, many PFT’s, oh gee
We scurry, we’re dazzled, we come then they see

You may have a CAT scan, a bron-chos-co-py too
And there could be several others, they make ask of you
And then the right heart cath the gold standard of all
This proves the diagnosis is proper – they made the right call.


Some take an oral an inhaled or such
Some with IV’s and more, oh, oh so much.
Revatio, Adcirca, Letaris, Tracleer,
Ventavis, Tyvaso are a few that are here
Then Veletri, Remodulin or Flolan may do
And some of these meds are almost brand new.

A hose in the nose; a tube in the chest
We struggle; we strive and hope for the best.
It is very doable this dastardly disease
With research abounding, there’s hope – so let’s breathe


Those researchers out there, those researching now
How can we help you, with what and the how.
We’re counting on you to brighten our life
You give us more hope to end all this strife.
We’ll give you some blood or whatever you need
And hope for a cure of this dastardly disease.


The cost of these meds is abhorrently high,
We suffer, we struggle, oh my how we sigh.
Some insurance companies won’t give us a dime
The government too in their wisdom declines
Then say they will help - but they have special rules
Most are careless and thoughtless and actually cruel.


There are specialty pharmacies and pharma reps too
With guided persistence they know what to do,
They tell all those doctors those specialists out there
About the ph meds and how they need treated with care.
Some have special nurses and advocates now
Who teach the new patients the why, when and how.
They treat us so special it’s learning one on one
They do have support for us, their work’s never done.


There’s a ph community it spreads far and wide
We meet in some chat rooms and support groups with pride.
I’ve made many phriends and I value them well
Unfortunately though, and I do have to tell
I’ve lost ooh too many – that hurts thru and thru
This dastardly disease can do that to you.


With our phamily support system we’re able to cope
We share with each other, there is always hope.
Hope for a future, hope for a life
Hope we’ll endure without too much strife


Although it’s not cancer the symptoms may be
As bad, sometimes worse than that horrid disease.
PH is progressive and can cause us much pain
We must not let fear grip us, there’s still much to gain
As mentioned before and remember this now
Pulmonary Hypertension is doable – we’ll be here a while.

Let’s take a deep breath; so slow if you please
It can strengthen those lungs with this dastardly disease
In through your nose and out through your lips
Slow is the key – please remember that tip.


And last but not least, remember to smile
As smiles are contagious you see
And when you feel down; and bring on a frown
Turn that frown upside down just for me
Smiles make us happy and will help us cope
With having this dastardly pulmonary hypertension disease.

Merle ~ there is always hope

I have Pulmonary Hypertension

I have pulmonary hypertension ~ pulmonary hypertension does not have me.

Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases.

Symptoms range in severity and a given patient may not have all of the symptoms. PH may be secondary to COPD, HIV or Raynaud’s Phenomenon, Sleep Apnea, Scleroderma or even Lupus. There are several other contributing diseases that can cause PH or there can be no known cause. Untreated, however, PH has a worse prognosis than many forms of cancer. Did you know lung disease is the fourth leading cause of death in the U.S., responsible for one of every seven deaths?

Lest we Forget

From a newsletter from Senator Bob Casey: "As we mark Veterans Day, it is not only a time to thank our veterans for their service, but to also acknowledge the debt we owe them for protecting us and preserving our freedom.
When young men and women are brought into their nation's service a promise is made. We promise each veteran that their sacrifice and that of their family will not be forgotten.
To those who have worn the uniform and served their country; their sacrifices must be remembered.
There are approximately 23 million living veterans from different generations and with different needs.
This sacrifice is also borne by the families of veterans – by the mothers and fathers and especially the spouses and children.
I hope that everyone will remember the service and sacrifice of our veterans this Veterans Day and every day of the year."

Also remember this is Awareness Month for Pulmonary Hypertension. Another battle, a different field.
Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Merle -- Always remember