Still waiting....

[Sarah_Louise]

Hi everyone,
Well it's been 6 weeks since i seen my cardiologist and im still no further forward about what happening with my funding for my 6th op, i HATE all this waiting i got my clinic letter through the post today from last month and there's nothin much positive on it i don't think.....It is 3 pages long with my name, address, diagnosis and medications taking up the first page, you just no thats not good lol!

The lung tests i had done:
My VO2 max test results are 27% anything below 28% is classed as very poor,
My FVC is 2.7L normal is 3.7L,
My FEV1 is ony 42% normal is between 80-120%

(Think the normal ranges are right, although did have to use google lol-anyone know different where the results are actually any where near normal lmao?)

It goes on to talk about the peak valocities of the valves:
Tricuspid valve regurgitation of 5.3m/s
Pulmonary valve stenosis/ RVOTO of 4.3m/s
Aortic valve regurgitation 2.9m/s

Bit confused here cause i though the higher the number the worse it is, so looking at that you'd think my tricuspid regurgitations worse wouldn't you? but the letter says its mild?!? is there a difference is a peak valocity when one is regurgitation and one is stenosis? or have i just got the whole thing mixed up? can anyone explain please?

Now i've developed right vetricle dialation and it's hypertrophied wth impaired function and has high pressure, and narrowing of the branch pulmonary arteries going into my lungs,

Had to visit the GP on Monday as i'm retainig fluid, my hands, feet and face are swollen, he thinks its probably caused by my heart not working properly, so i've been started on fruisomide along with eveything else,
Got in touch with my cardiologist to let him no & ask if he'd heard anything and waiting for a reply which i no i wont get till Monday now at the earliest,

But still smiling.....just .....got my A-level exams starting next month too so stressing out about them and revision, but hey ho!
Hope your all well
Sorry for the moan!
Love Sarah xxx

 

[Jkm7]

Sarah,
You are so entitled to a little moan, please don't ever apologize.
While I don't understand all the numbers, I do understand the stress this is putting you through.
Hopefully your cardio will contact you Monday and you can try to move things forward.
I don't understand how your medical system works and about 'getting the funding' but I hope whatever needs to happen, does so soon.

You've been through so much and keep on with the smile. Good going!!!
Good luck with the exams. Try to concentrate on your studying right now.

 

[Bina]

I'm not familiar with lung function testing, but wishing you all the best with your exams and such

 

[nngbwh]

Sorry to hear. We are all here for you so vent and rant and bitch away.:biggrin2:

 

[dcc617]

I can't possibly imagine the stress you're going through. Bitch away, honey! You're entitled to it.

 

[coffeelover]

Sarah,
Thinking of you.Good luck with your exams and I hope that your cardio will contact you this Monday to answer all your questions,etc..
Take care

 

[TheGymGuy]

Sarah, good luck on your exams. Do you know if they will set a date shortly?
By the way, please post up and share as much as you want. You have been such help to lots of people, including me, and we all really appreciate it.

 

[Sarah_Louise]

Thanks everyone
Vadim: I'm waiting to hear if i've got funding for a pericutaneous pulmonary valve replcement, normally in the UK if we need any procedures done we go into hopital and the government pays for it through taxes, no questions asked, BUT what im having/hoping to have done isn't standard practise, that'd be OHS which i've been deemed to high risk for as it would be my 5th lot, (already had 4 OHS & 1 op via cath). So because its not standard practise my consultants have had to apply to my local Primary Care Trust (PCT) & ask for this money, he said we need £22,000 just for the heart valve & £8,000 per stent and i need at least 2 stents, and thats without the cost of the equipment, surgery team and theatre time!!
I'll only be the 6th person to have the op done in the hospital im having it done in and theres only a few hundered had it done world-wide!

I've just got off the phone with my cardiac liason nurse and she said its my PCT thats holding everyone up!!! Grrrrr so they can't do anything untill my PCT do.
Thanks again everyone
Love Sarah xxx

 

[escargome]

Sarah,
I will get to praying for you. I hope with all my heart that your PCT gets off its back-side and provides the funding you so badly need. You are such an inspiration to us. Keep strong and I will pray extra hard for you.

 

[TheGymGuy]

I hope all the negotiations go through and you get the needed funds asap.

 

[Greg a]

Sarah, I have often said not to underestimate the powerof the media! A story as rare as yours and as deserving will get attention of the electorate who gives parlimentarians their jobs ....blanket local and national outlets with a written outline for them to chew on making sure they all know who you have submitted it to then they will not hesitate to pick up the story ahead of others ,,,,,from an editors view it has tremendous human interest and will motivate the PCT as they dont want to be painted as the villans

 

[karla]

What an AWESOME idea, Greg.
Sarah, good luck. Praying for you.