I write because….

I write because I hope that somewhere along the way I will be able to help someone – someone who may be newly diagnosed with having the dastardly disease or someone with the dastardly disease and is having a not so good day. Either way, I will listen and encourage that sharing; to let them know others do understand.

Pulmonary hypertension is a rare life threatening disease of both the heart and lungs… no cure as yet but now several “therapies” are available and several are in trial – there is hope. Hope for a cure.


Each of us who have this disease is unique – no two of us seem to be the same. Some may have it secondary to another disease some they may have not found out why but deep down there will be a why. There always is. Some of us are on multiple therapies - some on only one. Unique???

Many doctors are doing research, not only to find a cure but also the why and what can be used to slow or stop the progression. Did I mention it is also a progressive disease? Well it is.

With the therapies that are out there now, this disease is very doable. The key is to being properly diagnosed. Too many times it is mis-diagnosed; symptoms mimic heart problems other lung issues such as asthma – and several others. Then there are some of those doctors who will say “it’s mild, not to worry”. Well, dah, it’s a progressive disease – very doable but it is progressive and if it can be treated at the mild stage it will just take that much longer for the progression to progress. Makes sense to me.

Being a Support Group leader I receive calls from pholks, usually newly diagnosed who are scared and I can’t blame them. Again, I mention with the treatments/therapies available, it is very doable. You will have a new normal but you can do many things you did before – many are able to go back to work, some have to readjust their lives. Remember doable.

We are never guaranteed an easy life and as in climbing a mountain, sometimes we have to go down in order to reach the top. Life can be a challenge but also a joy. We need to focus on those joyous moments.

Merle
Remember to smile – it is contagious.

Talk is cheap

When I was in high school I used to save “Quotable Quotes” from the Sunday paper and the one I remember the most and has been a lesson in life is: Talk is cheap – I’m sure many of you have heard that but have you heard the rest of it. Talk is cheap but you can’t buy it back. I learned that lesson the hard way.

Again, while in high school a friend told me something about another friend that I believed to be true so I also passed it on. We both found out the hard way that the statement wasn’t true and we hurt another friend’s feelings. At this point I don’t even remember what it was about but I do remember the results and how something said so innocently could spread like wild-fire.

From that point on I tried my best to be sure what I said wasn’t something that I would regret saying or more importantly, something I could not buy back.

Now, with having a life threatening and rare disease it is important to remember when you say something about it, especially to a newbie, it should be something that is understandable and not something to fear although it is a scary disease. Pulmonary Hypertension – rare, progressive, life threatening and no cure as yet. Then I also remember there are several therapies that help retard or slow the progression of the disease. It is doable with proper treatment and we are all so different with what will work for us.

Merle
Remember to smile – it’s contagious  another good quote

Sharing and Stories

A couple of weeks ago I met a phriend. One of those phriends you have emailed, spoken to on the phone but have never met. Well, we decided to meet and she came up to my neck of the woods from the Pittsburgh area.

It was a “let’s meet for coffee” thing. I live near a major outlet mall and I thought meeting there would be convenient for both of us. Easy access for her from the Interstate and it’s only 3 miles from where I live – what more could one ask for.

Now that I think about it, it was St. Pat’s Day. I emailed and said I would be wearing a hot pink sweater – figuring everyone else would be in green. Something to keep in mind when you meet for the first time; wearing something that stands out. I also mentioned I would be the one with a hose in her nose and a tube in her….. hmmm chest. <<< that’s an inside joke for those who have pulmonary hypertension and are on an IV Medication. :o}

We are both involved with pulmonary hypertension, I being a patient and support group leader and she being a caregiver. She told me about herself and her concerns and interests and I told her about me – now that I think about it, a lot about me and I’m usually the listener.

We talked about what’s on the horizon for PH – actually that’s the title for our next support group meeting which is toward the end of this month. We talked about coping about sharing joys, fears and concerns. You name it, I betcha we talked about it and I won’t go into specifics as it would be too long and I would probably wear my fingers out typing it all. But if I would I could place it in a time capsule and take it out in a year or so and see if my thoughts/concerns would be answered – continued research to find a cure, continued awareness; there are still too many doctors who don’t understand the seriousness of this disease. That pretty much hits the nail on the head.

We shared our stories and had tears of joy or laughter at times and also those tears of sorrow that can come from pain, be it physical or emotional; that pain that can afflict someone with a rare and life threatening disease such as pulmonary hypertension – the Dastardly Disease; the pain and emotions a caregiver has to endure as well. They also have very emotional needs. What would that time capsule reveal as to their concerns?

We spent almost two hours chatting away and ended on a happy note – those are the best to end on. I had a great time and I believe she did as well. I am looking forward to our next “let’s meet for coffee”.

Merle
Always remember to smile – it’s contagious

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