Where does it all end?

[Guest guest]

Jo, how scary! Arg. Don't let taking care of your mother destroy you, either

-- I like having you around...

[Guest guest]

Jo,

I'm so sorry for all the ailments you go through and the pain! I do indeed

hope the Cardiologist's come up with an answer for you. But even Holter

Monitors can miss the event if you don't have an episode of tachycardia

while you are wearing it. So it is to be for us, no end! Please take care

and don't try to help you Mom to much, I won't say no don't do it because I

would probably try too! Take Care! Much Love, S.

Where does it all end?

> Could someone please tell me when this particular ride stops as I'd

> really like to get off for a while. This week has just been a

> completely nightmare starting with my Mum smashing her foot, then my

> crazy hip dislocation and finally today's rather shell shocking

> events. It's a long story but I will try to keep it brief I

> promise...I just need somewhere to spill my guts out after a hellish

> day.

>

> I suppose in all honesty it started last night as I had a run of

> very painful irregular heart beats followed by 20 minutes of extreme

> tachycardia whilst soaking in the bath - I have had them before so

> didn't really think anything of it especially when it wore off. This

> morning however following an outpatient appointment in my local

> hospital, I was hobbling along the corridor when I was floored by a

> horrendous chest pain and extreme dizziness. I literally slid down

> the wall as a passer by caught me and shouted for some help. Five

> minutes later I am hooked up to every monitor possible in ER,

> chucking out SVT's all over the place and posting a pulse oxygen

> level of just 85%.

>

> I was struggling to breath even on 100% oxygen, making the doctors

> extremely concerned. After several attempts at carotid massage my

> heart beat regulated but the rate was still fluctuating from lows of

> 60 up to 130 in seconds and my oxygen sats plummeted as soon as the

> oxygen was removed due to my laboured breathing. I was sent for a

> chest x-ray which had the docs in yet another flap as they told me

> they thought I had air around my heart!! Then a cardiologist was

> called and his first instinct was that I had started to dissect my

> aorta....welcome to how terrify a mutant in two easy steps.

>

> I was admitted to the cardiac care ward for closer monitoring and

> after much probing and prodding they are pretty sure neither of

> these has actually happened, but want me to get my artic root size

> measured again to check for any dilation due to my Marfan factors.

> My heart rate gradually stabilised during the scary and busy

> afternoon, as thankfully did my pulse ox which is now steadily at

> 98%, but the cardiologist are still very worried and very puzzled as

> to what is going on, especially as my blood pressure was so low it

> didn't even register at one point. The upshot is that I have to have

> even more tests, including repeat halter monitor, echo and tilt

> table plus referrals to the cardiology department to try and finally

> get to the bottom of my weird heart rate as my blacking out and

> collapsing has really spooked everyone.

>

> As you've probably gathered from the fact I'm writing this, I was

> eventually although reluctantly allowed home on the promise I take

> strict bed rest and have the cardiologists beeper number on hand

> should my SVT or breathlessness begin again during the night. I hope

> to God it doesn't as I have never been so frightened in all my life.

> I guess I'm going to get plenty of chance to rest my hip though!

> Trouble is I really can't afford to rest up like this as I need to

> help my Mum. I swear I will be glad when this week/month/year is

> over with as it's just one thing after another at the moment.

>

> But I guess the only way to get through it is to keep smiling and

> finding the funny side of things as I always try to. I have to admit

> that it was actually amusing and reassuring today to know that I

> have a heart, even if it a little mischievous by the looks of

> things. I shouldn't really be surprised that I have naughty heart

> though should I? ;-)

>

> Take care all and I hope you are having considerably better days and

> week. Thinking of you all and sending apologies if I can't be around

> as much as I'd like right now.

>

> Love and hugs.....Jo

> xxx

>

>

>

>

> To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

>

[Guest guest]

Jo,

I'm so sorry for all the ailments you go through and the pain! I do indeed

hope the Cardiologist's come up with an answer for you. But even Holter

Monitors can miss the event if you don't have an episode of tachycardia

while you are wearing it. So it is to be for us, no end! Please take care

and don't try to help you Mom to much, I won't say no don't do it because I

would probably try too! Take Care! Much Love, S.

Where does it all end?

> Could someone please tell me when this particular ride stops as I'd

> really like to get off for a while. This week has just been a

> completely nightmare starting with my Mum smashing her foot, then my

> crazy hip dislocation and finally today's rather shell shocking

> events. It's a long story but I will try to keep it brief I

> promise...I just need somewhere to spill my guts out after a hellish

> day.

>

> I suppose in all honesty it started last night as I had a run of

> very painful irregular heart beats followed by 20 minutes of extreme

> tachycardia whilst soaking in the bath - I have had them before so

> didn't really think anything of it especially when it wore off. This

> morning however following an outpatient appointment in my local

> hospital, I was hobbling along the corridor when I was floored by a

> horrendous chest pain and extreme dizziness. I literally slid down

> the wall as a passer by caught me and shouted for some help. Five

> minutes later I am hooked up to every monitor possible in ER,

> chucking out SVT's all over the place and posting a pulse oxygen

> level of just 85%.

>

> I was struggling to breath even on 100% oxygen, making the doctors

> extremely concerned. After several attempts at carotid massage my

> heart beat regulated but the rate was still fluctuating from lows of

> 60 up to 130 in seconds and my oxygen sats plummeted as soon as the

> oxygen was removed due to my laboured breathing. I was sent for a

> chest x-ray which had the docs in yet another flap as they told me

> they thought I had air around my heart!! Then a cardiologist was

> called and his first instinct was that I had started to dissect my

> aorta....welcome to how terrify a mutant in two easy steps.

>

> I was admitted to the cardiac care ward for closer monitoring and

> after much probing and prodding they are pretty sure neither of

> these has actually happened, but want me to get my artic root size

> measured again to check for any dilation due to my Marfan factors.

> My heart rate gradually stabilised during the scary and busy

> afternoon, as thankfully did my pulse ox which is now steadily at

> 98%, but the cardiologist are still very worried and very puzzled as

> to what is going on, especially as my blood pressure was so low it

> didn't even register at one point. The upshot is that I have to have

> even more tests, including repeat halter monitor, echo and tilt

> table plus referrals to the cardiology department to try and finally

> get to the bottom of my weird heart rate as my blacking out and

> collapsing has really spooked everyone.

>

> As you've probably gathered from the fact I'm writing this, I was

> eventually although reluctantly allowed home on the promise I take

> strict bed rest and have the cardiologists beeper number on hand

> should my SVT or breathlessness begin again during the night. I hope

> to God it doesn't as I have never been so frightened in all my life.

> I guess I'm going to get plenty of chance to rest my hip though!

> Trouble is I really can't afford to rest up like this as I need to

> help my Mum. I swear I will be glad when this week/month/year is

> over with as it's just one thing after another at the moment.

>

> But I guess the only way to get through it is to keep smiling and

> finding the funny side of things as I always try to. I have to admit

> that it was actually amusing and reassuring today to know that I

> have a heart, even if it a little mischievous by the looks of

> things. I shouldn't really be surprised that I have naughty heart

> though should I? ;-)

>

> Take care all and I hope you are having considerably better days and

> week. Thinking of you all and sending apologies if I can't be around

> as much as I'd like right now.

>

> Love and hugs.....Jo

> xxx

>

>

>

>

> To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

>