47 ~ A bridge to transplant ~

In chapter 43 I mentioned that I feel “something” is needed to support my hearts pumping capability..

Unbeknownst, there is a device termed as a:

LVAD – Left Ventricular Assist Device.

A fact brought to my attention after that post, when I actually had no clue such a device to support pumping exists.

Wow?? Really???

I bemused as an experienced patient who knows the ins & outs of CHF stated:

“You’re probably in need of this device”

Besides Bipap which serves as a ventilator for CHF patients I never thought there’d be a device of this sort.

Basically meaning a battery operated, mechanical pump type device surgically implanted to help maintain the pumping ability of a heart.

Types vary according to the extent & kind of failure.

But commonly used as a bridge for transplant patients awaiting a heart donor or considered unfit for transplant.

This is an illustration of a LVAD.

Kindly google search if you’d like to know more. I gained this much needed information from a support group.

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No surprise that a simple activity of talking in whispers causes it to fail in pumping efficiently.

Now I make lip movements or converse mainly in sign language.

An expert in that.

Attempting to talk “lot” in whispers elevates my respiratory rate & prompts fainting due to a lack of circulation to the brain.

The reason why I’ve had 3 fainting episodes recently one after another..

Therefore;

Kindly take into consideration

⚠️ Socializing is limited.

No doubt! Being surrounded with good, positive company enhances the spirit & truly makes my soul fly..

But for long periods or few hours it does not work in my favor, as much as I’d like it to.

⚠️ Consideration before statements such as “go out you’ll feel better” are definitely appreciated.

A change of environment & company is ALWAYS good but sometimes more detrimental.

⚠️ Or if someone asks:

“Why don’t you go with??”

When family members are going out somewhere…

If I could, I would have. Simple as that yeah?

⚠️ “Keep yourself busy”

I’m more busy than i should be 😜

We know what our bodies require & need to listen to its whispers before they become screams.

Please be aware of the bigger picture involved.

Kindness in thinking goes a long way.

I’m always so careful & weary of what I tell people because we never know the circumstances they’re undergoing.

Unless fogged please excuse 🙈

⚠️ No going out to social gatherings or visiting unless I’m surrounded by people who understand the necessity for a least amount of exertion.

Maybe I should put a sticker somewhere on me that states:

“Warning ⚠ Please don’t make me exert”
Unless you know first aid emergency & CPR 😂

(CPR will be elaborated in the next post)

✔️ People who can sit at my side without needing to say a word.

✔️ Silent company.

✔️ People who can sit at my side & chat via text at the same time.

⚠️ The end result of being crowded & bombarded with questions doesn’t end off well & causes worse setbacks.

⚠️ Please feel free to WhatsApp, email, message etc – via these forms of communication I can gladly chat away 😀😀😀 & actually make up for all the talking I cannot do by mouth 😂

⚠️ Please excercise patience with my responses too. I honestly do not mean to ignore or provide no response purposely.

⚠️ Since recent I just about manage to shower, dress, do frequent movements to prevent muscle deconditioning, daily work of calligraphy & type posts.. then again I don’t manage all of these activities every day.

⚠️ Requires day & time splitting.

⚠️ More than enough of a workload.

⚠️ Some days the most I manage is to focus on breathing. If that’s what my body requires it shall recieve corporation without being overloaded further.

⚠️ Exhaustion & fatigue which stems from CHF is something that cannot be understood unless a person is in the situation themself.

⚠️Will invent an example of this soon.

In the meantime here are a few couplets:

As the challenges extend in width & depth

I will fight for every breath until death

To explain the reality

My 💙 resembles a weak battery

Causing the tick tock of a clock

To move backwards

Other times forward

Unknown upon which spot

It will suddenly stop

Or a date;

The final fate.

This is not a lament

Or type of vent

Rather, actual facts

Of the organs in my chest

Patience shall not waver, lest

I be deprived of the best

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* On most support groups I’m found to always be the odd 1 out with unheard differing symptoms..

* You know you’re rare when you are the youngest patient seeking advice on a CHF group consisting of 4,9 k members.

* You know you’re rare when you inquire regarding an increase of hemoptysis & then told:

* None experience this issue let alone as a daily recurrent problem…

I sought help

I sought advice

I searched wherever possible..

To inquire if this frequency of blood could be controlled or managed

But recieved no answers in return.

I looked left

I looked right

I looked at other fighters who had great teams of medical personnel to back them up at every step

And I saw myself standing & striving

To keep my light burning brightly

Despite all odds against me

I looked everywhere around

But then I gazed above & found;

Never will I be alone even if there’s none to provide proper assistantance in terms of treatment intervention

As long as HE directs the lead

It is sufficient for each need

There is a hidden reason why he chose me to be in these circumstances

Had I understood the wisdom, my heart would have torn into pieces out of thankfulness.

But I do not so in him I place my full trust

Verily! In this same chest is a book which shields me from every distress

Contains a solution to every affliction

Is never bereft of consolation

Life also brings about beautiful offer’s

Amidst physical internal disorders.

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If you’re suffering from any kind of pain

Physical or emotional…

Remember;

Your PAIN

Is not in vain

There are future rewards, which we will obtain

Trials are not sufferings from which there is no gain

Even when Drs or the general public treat us with disdain.