spoken in my ear

Feeling a little better today. And, I did just like it says: I walked a bit. For just 10 minutes, and when I still felt all right, I extended it to 20.

I'm resting now. 

a little harder to breathe

That's how it is today, and I am sad about that. Because I've been having good days, and thought that I've been doing really well. And then, Pooooof! It's over.

Over the past few days, the headaches have been a little more pronounced than they usually are. I have headaches all the time, it seems. But, they come and they go. If I don't think about them, I imagine that they've gone. Hahahah. It's all in my mind, I say!

However, over the past few days, I've been very conscious of them lurking about. Even when I try to think them away, it hasn't worked.

Then, this morning, while I was walking in circles, I felt this scratchy feeling in my chest. It isn't as serious as gasping for breath, but it is there, and I feel something in my chest when I breathe.

So, it ain't too easy to do this:

Headaches. Scratchy feeling in my chest. Result? Tiredness. So, even though I managed to complete about thirty minutes of my walking-in-circles routine, this morning, I felt really tired afterwards. Obviously, there isn't as much oxygen reaching my lungs as there should be, and so my body says: rest.

And I've been doing so well!!! Misery. I know this will set me back, and that irritates me. It took me a while, but I upped my time from twenty to thirty minutes over the last few days. Continuous walking, and doing well.

Now, I'm wondering if I pushed myself too hard. Hmmm.... But, it's a joke surely? I walk fairly slowly, and don't feel breathless or tired after my walks, so I think I'm doing fine. How can I not be?!

Geez, maybe my body doesn't agree. Maybe my lungs think I'm a freaking nutcase! 'Leave me alone, already,' it may be screaming. Ya' think?! Sigh.

Anyway, do not imagine me prostrate, and daintily sipping something, on the sofa. Well, resting in a horizontal position, maybe. Hahahah.

I am tired, so the resting come naturally. Always, this so-tired business is a tad demoralising.

BUT ... I will take my Spiriva, like a good girl, and after a few days, this will clear. Fingers crossed.

And, OH! I almost forgot - Time for a weather report: It has been hot and dry over the past two days. And Chuan says he smelt smoke in the air, this morning. Nothing like a bright and sunny day, with the air clean and pure, for my neighbours to decide: Lets BURN dem leaves and things! Nice lah, these people. Bloody pyromaniacs!!!

Ah well, c'est la vie! Tomorrow is a new day, and it may be better 😊

26 September:

So today, I walked in circles, as usual. For 20 minutes, and it was cool. I rested for a bit, and then, thought I'd do another 10 minutes or so. Not a good idea 😑

The scratchy chest returned, and a bit of a headache made its presence felt.

So: The lesson is learnt. I can walk for 20 minutes continually, and I'm good. If I want to up that, I'll need to do it in small-small increments. So small that my body - read: Lungs - do not notice. I've gotta fool those twins that I'm not doing more than they think I should! I've got this!

In the meantime, to help me get back to normal: 

walking in circles

Yes, that's what I try to do, every day. I started out with just walking for 10 minutes - and that was tough!! But, I persevered and moved it up to 15, and then 20 minutes. For the past few days, I've been doing 30 minutes.

My goal for each day is 3,500 steps. That's wayyyyy below what is recommended: 10,000 steps. My daughter does 12,000 easily. But, she is young and healthy. Lucky girl!

For me, anything over that goal I've set myself makes my heart sing. No matter how I feel, I try to at least achieve 3,500 steps. On some days, it may involve just one-hundred steps at a time. And when I hit it, my Fitbit will vibrate on my list, and I am happy. Tomorrow, I'll do better. Baby steps. Literally, eh?! 😁

While I'm walking, I keep an eye on my heart-rate, and I'm aware of how I'm breathing. No breathlessness allowed, so I consciously note my breaths and that they're coming easy, and that I feel good.

This is continuous walking that I'm talking about. I try to get it in before lunch, sometime. And then, if I'm feeling up to it, I'll try to squeeze in about 5 to 10 minutes or so, in the evening. Not power walking or anything. Just happily walking along, on the flat floors of my home - no stairs! And sometimes, belting out some song that I'm listening to on YouTube. Walking AND singing, how cool is that?!

And I do this in my Birkenstocks - nice and comfy, with my soles well cushioned, so that the rest of me isn't injured either.

Today, I walked for half-an-hour. And I did the same yesterday. It's a big deal for me, and I say: Yay!!! Hahahah

This is my Fitbit record for this week. It's almost 1 pm, and I've quite a happy number of steps, haven't I?

Below, is my record from last week. Slowly getting there . . . . But there are days when I don't feel very good - so, on those days, I rest. Resting is my superpower, and I do it without an iota of guilt!

And below, is my record from about a month after being put on sildenafil. Before that, there were days when I barely moved at all. So, this is one of the better days recorded, from that time.

Walking is easy, so it's not something I dread, or feel unhappy about having to do. Plus, I know that it's good for me. And, it's good for my heart, and for my lungs.

I don't know if what they say up there is true - but, I really hope it is!! Some of us need all the help we can get 😊

a little bit of rest

On Monday night, I stopped taking ezitimibe, my chosterol-lowering medication. I've been prescribed with another one, and I'll start on that one next week sometime.

We thought - Chuan and I - that we'd give my liver a little rest. It's been working really hard, since November '16, handling the load of medications that has assaulted my system, hasn't it?! Time for a little holiday, minus one medication.

Ezitimibe has a half-life of 19-to-30 hours, so there's quite a bit of it still circulating in my system, even after five days.

An unexpected outcome of this 'rest', is that there is a noticeable easing of the pain I've had in my right shoulder, right hip, and right knee. No need for Sherlock Holmes on this one: Most cholesterol-lowering drugs have the lovely side effect of joint-pain, among a whole host of other lovelies. (See here for my other medications, and their side effects.)

Years and years ago, I was put on Lipitor (a statin), in an attempt to lower my cholesterol. Yes, we do seem to have a little problem with that, don't we? I took it for a month or so, but my right shoulder kinda froze - there was limited movement - and it was very painful. So, I got off the medication, and the shoulder un-froze itself and I was as good as new. My cholesterol level also righted itself, and all by its lonesome, too.

This time around, I didn't relate my aching right side to ezitmibe - until I stopped taking it. And now, I am enjoying an almost pain-free shoulder, hip, and knee - and, like I said, it's only been five days. I'm expecting the pain to be out the window, soon!

Then, I'll start on Lipanthyl (fenofibrate). Here's what WebMD says about it:

Fenofibrate is used along with a proper diet to help lower "bad" cholesterol and fats (such as LDL, triglycerides) and raise "good" cholesterol (HDL) in the blood. It works by increasing the natural substance (enzyme) that breaks down fats in the blood. Fenofibrate belongs to a group of drugs known as "fibrates." Lowering triglycerides in people with very high triglyceride blood levels may decrease the risk of pancreas disease (pancreatitis). However, fenofibrate might not lower your risk of a heart attack or stroke. Talk to your doctor about the risks and benefits of fenofibrate.

By the way, my triglycerides are in a good place.

The side effects:

• severe stomach/abdominal pain,
• persistent nausea/vomiting,
• yellowing eyes or skin (jaundice),
• dark urine,
• unusual muscle pain,
• tenderness, or.
• weakness especially if accompanied by fever or flu-like symptoms.

The complete - and scary - list of side effects can be found here.

With all medication, we have to balance the risks of the presenting problem (in this case, high LDL levels) against its possible side effects. I read the list of side effects and think that this drug is probably going to kill me much faster than my IPAH is! 

I'm going to do a Pooh Bear and think-think-think about this for a while. 

Some good advice, below:

NSAIDS and PH

'...Non-Steroidal Anti-Inflammatory pain medications (NSAIDS) such as ibuprofen (Motrin), naproxen (Aleve), Etodolac, celecoxib (Celebrex) are all effective medications for mild to moderate pain.  However, all these medications also put increased stress on your kidneys.  In PAH, the kidneys are already under stress from impaired right heart function.  Taking these medications promotes fluid retention and can lead to abrupt worsening in kidney function and increased shortness of breath over a short period of time.

A safer alternative for mild to moderate pain is acetaminophen (Tylenol) (for me, Panadol).  Even if you have some degree of liver disease, doses of 2,000mg per day are safe.  If you don’t have any liver disease, doses of up to 4,000mg per day are safe.  No more than 1,000mg should be taken at a time and no more often than every 6 hours.  You should avoid alcohol if you take acetaminophen....'

Antibiotics with PH

'...Antibiotics are one of the most commonly prescribed medications.  Unfortunately, most antibiotics prescribed for respiratory infections in the ambulatory setting are given to patients with respiratory viruses.  Antibiotics have no activity against viral respiratory infections (except for Tamiflu for Influenza).  At the same time, many PAH patients are taking warfarin (Coumadin).  Antibiotics interact with warfarin in a way that results in warfarin being far more effective.  The net result is that your blood will be too thin and the risk of bleeding will be markedly increased.

The solution to this problem is two-fold.  First, avoid antibiotics for the common cold and other minor respiratory complaints such as acute bronchitis.  Second, if you are taking warfarin, always remind your doctor and ask if the warfarin dose should be reduced.  My practice is to reduce the warfarin dose by 50% for the duration of antibiotic use.  I also check blood work to monitor warfarin more often if the course of antibiotics is prolonged....'

(Taken from here.)

- also, some antibiotics increase the efficacy of digoxin (for example), and doses must be adjusted - see below.

the doctor has spoken

So, we're home after our visit to the doctor, at IJN. I'd say it was a good visit, and I am doing well. Happiness. And the doctor smiled at me. Again. Hahahaha.

My blood-test results are fairly good: There is a heart enzyme that is now normal, and that's really good news. It was wayyyy off the charts for a long while, and that it is normal now means that my heart is happy, and is no longer stressed.

But, my potassium levels are up. This is probably the consequence of being on Spironolactone (a diuretic), so I've been taken off it.

Also, my cholesterol reading: Although it has come down from the last time it was read, it is still outside 'normal' and that is not good. So, I shall now have to bite the bullet and take Lipanthyl. Fingers crossed this does the job. Mr doctor-man is threatening to put me on a statin if the readings don't improve! Yowzer! I've read enough about the ill-effects of statins to not want to be on them unless I absobloominglutely have to!

So, I shall watch what I eat, and try to exercise religiously - read walk! - and I am confident my cholesterol picture will improve.

I had some questions for him, and these are the answers:

• do I need to take my blood pressure daily? That's not necessary, but it would be good if I can;  to keep track of how I'm doing.

• how do I monitor myself between visits to see you at IJN? Generally, if I feel all right, it means that I am doing all right! Hahahah. Howz about that for an answer?!

• do I need to see a GP between visits - so that he can monitor how I'm doing? Nope. If I am not ill, there is no need to go to a GP. (That's good news, because GPs are full of people who're coughing and sneezing and being generally ill.)

• when do I need to haul myself to Emergency? What symptoms do I need to be wary about? He laughed when I asked this. Ok, I lie: He smiled more broadly than he was already smiling, is all. He didn't think that that was going to be an issue now. Even if I have the flu, or a cold, a visit to the GP would be enough. But, I'd need to say that I have IPAH, and then they'd know how to take it from there. 

• can I fly? I want to visit my daughter in London. Yes, I can - and I won't need oxygen. How cool is that?? He said that if I can walk for 20 minutes, without feeling breathless, I will be fine in the air. On my broom, or on a plane!

• I walk, and that's all the exercise I do. How much exercise is 'enough'? This is really up to me, he says. If I can walk continuously for 20 minutes or so, I'm doing all right. I need to worry only when/if I get breathless when I walk.

I think I am doing all I can to meet this head on. I am trying to walk every day, and I am trying to make this walking-in-circles last for at least twenty continuous minutes. Longer, if I am feeling all right. Sometimes, on days when I don't feel too good, I break that twenty minutes into two ten-minute sessions. But so far, I haven't had to do that very often.

So, I am doing well. 

He is trying to keep my heart and arteries healthy - that's why he's adamant about bringing my blood cholesterol reading down to within the normal margins. 

Very gently, he explained - again - that this is a disease about managing the symptoms, and not about securing a cure. Essentially, it is a disease of the lungs, and the pressure in my lungs is high, and will remain high. The sildenafil I take helps relax the blood vessels in the lungs, and eases the flow of blood into it. This in turn eases the pressure on my heart: it doesn't need to pump so furiously to get blood into my lungs. Like it had been doing before the sildenafil - which led to the enlarged right ventricle. At some later point, sildenafil alone will not be enough. Then, he will need to add on more medications to keep this happening. For now, it's all good. 

Every time I have an appointment, I'll need to take a blood test (to check that everything else is working; and that my heart's hormones are fine), and do the six-minute walk. The results from both of these tests will give him an idea of how I'm doing. If I am not breathless, and I can function all right - well, that will be my barometer that all is well.

I think that today's visit was a good one. And, I'll see him again in four month's time. I should be back in KL by then 😊

a visit to the doctor's

Tomorrow, too 😀

So, three months have passed, and it's time for another visit to IJN.

This time around, besides checking on my lungs and heart, he wants to see how my cholesterol levels are doing: He wants them to go down.

I've shied away from taking meds for it, and tried to adjust my diet to exclude extra fats/oils (I truly believe both oils and fats are necessary, though. Just not in excessive amounts.), and I've upped the amount of time I spend walking-in-circles.

I walk around the house, trying to hit at least 3,500 steps every day. Some days, I can barely hit 2,000. Other days, I hit more than 4,000. Doing anything more is too difficult, and I pay for it dearly, the next day. This is my walking-in-circles, and I try to do this about twice a day, for about ten to 20 minutes, each time.

They say that exercise uses up cholesterol, especially in the absence of sugar in the system. So, ideally, the time for me to walk is before lunch. Which is what I've tried to do, if my body says it's ok. Sometimes, I try to argue, but my body is pretty firm about what it will do, and what it won't!

Back to IJN: I have some questions for my doctor. And I've written them down, so that I don't forget!

• do I need to take my blood pressure daily?
• how do I monitor myself between visits to see you at IJN?
• do I need to see a GP between visits - so that he can monitor how I'm doing?
• when do I need to haul myself to Emergency? - What symptoms do I need to be wary about?
• can I fly? I want to visit my daughter in London.
• I walk, and that's all the exercise I do. How much exercise is 'enough'?

My visit is weighing on my brain, so I am not in the best of moods. Not really focused on anything. I am the queen of being anxious about things I have very little control over - so bite me! To help me cope with this, I am reading some fluffy rubbish - I can't concentrate on anything serious - and watching episode after episode of 'Taggart' on YouTube. I do have moments of sanity, though. It's not all spaced out and zombie apocalypse. 

We'll be leaving at the crack of dawn, tomorrow. Literally. It will be dark when we leave, and as we hit the open highway, we'll see a sliver of light on the horizon - the yawning sun! It's a long drive there of almost two hours. But, it's how it needs to be. I will be fasting, and will need to have my blood taken by about 7.30 am. Then, it will be breakfast, and then flirting with my Kindle until I'm called to see the doctor - by around about 11 am, fingers crossed. Oh, what a fun-filled day it's going to be!

overjoyed

That's me, singing this oh-so-difficult-for-me song, by Stevie Wonder! It was released in the mid-80s when I was a young mother, and too busy with dirty diapers and trying to learn about being a wife and mum, to know what the new song releases were!!! Hahahaha.

Years later, I'd hear this song, and just flow away on the music. And the words! I love the way the words are all jumbled around, and often don't follow the natural way we speak. 

This isn't jazz, but there are bits and pieces of it here - and that's enough to catch me off guard. And often!

I think this will probably be the last song I post here. If I do record more, they'll be on my channel on You Tube. I'm toying with the idea of singing the harmony - to myself - on The Bee Gees 'In the morning'. I can plan it, but I have to wait for a visit from my voice before I can go ahead!

Any day I can carry a tune without croaking, that's a good day. And so, yesterday was a good day 💖

I've put the lyrics below, so that when I decide to give me a listen, I'll have the words to help me along. In some parts, there are wayyyyy too many words for the space of the melody!!! Stevie Wonder is da man!

Over time, I've been building
My castle of love
Just for two, though you never
Knew you were my reason
I've gone much too far
For you now to say
That I've got to throw my castle away

Over dreams, I have picked out
A perfect come true
Though you never knew it was
Of you I've been dreaming
The sandman has come from too far away
For you to say come back some other day

And though you don't believe that they do
They do come true
For did my dreams
Come true when I looked at you
And maybe too, if you would believe
You too might be
Overjoyed, over love, over me

Over hearts, I have painfully
Turned every stone
Just to find, I had found what
I've searched to discover
I've come much too far for me now to find
The love that I sought can never be mine

And though you don't believe that they do
They do come true
For did my dreams
Come true when I looked at you
And maybe too, if you would believe
You too might be
Overjoyed, over love, over me

And though the odds say improbable
What do they know
For in romance
All true love needs is a chance
And maybe with a chance you will find
You too like I
Overjoyed, over love, over you,
Over you

____________________________________

How singing helps with PH - it really does. I read it here 😍