The plot thinnens again...but there will be a happy ending

[nursedarry]

Hi everyone. Since I last posted, I've had an MRI (last week) and met with one of my surgeons, who I absolutely loved (today). I brought along a friend who's a drug rep and knows lots of A&P, just for moral support and I didn't want to drive after a whole 45 minutes of sleep last night, and she liked him too. Answered all my questions, really listened to me, and didn't speak in jargon. Made me feel like I am in very capable hands.



♥ Anyone who's claustraphobic, hates loud noises or doesn't like needles should avoid having a cardiac MRI. I'm none of those things but by then end, I was ready to run naked through a quiet field full of daisies. You're strapped in and shoved into a noisy tube with a needle in your arm and after awhile (I was in there for over an hour), you get the feeling the nurses may have turned the thing on and gone for a cup of tea. Actually, the staff were wonderful and I was in there so long because of the nature of my condition - it had never been seen before, so they needed lots of pictures. I got to see them, and yes, it was cool. Not an experience I wish to repeat, though.

♥ I've only got one pulmonary vein where it shouldn't be EDT: Actually, I had three parts of one vein where they shouldn't have been... One is coming from part of my lung which normally doesn't have pulmonary drainage. It's running from the lung to the Superior Vena Cava, which leads into the right atrium. The plan is to either take it off the SVC and attach it to one of the veins that is going to where it should (into the left atrium) OR just remove the vein and the part of the lung to which it's attached. It's a small piece of lung tissure and because of the how the vein is sited, it hasn't been used for proper respiration anyway. The other surgeon will decide when he gets in there.

♥ My mitral valve is worsening, and as much as he'd like to repair it, it may have to be replaced. But in order to keep me from needing more than one op, I'm all for this. Again, he'll decide when he gets in there.

♥ Those of you who follow me on Twitter will know I've got such bad Restless Leg Syndrome and other sleep disturbance side effects from the drugs I'm on (mainly the blood pressure ones), that I'm sleeping only one hour at a time, usually for less than four hours a night. I do apologise for all the whinging; I've re-read some of the tweets and boy, do I sound like a cantankerous twat. However, as a result, I've become quite depressed and groggy and grouchy and all those other things that go along with sleep deprivation. Doc has sent me home with a couple weeks worth of sleeping tablets and and is sending instructions to my GP to start me on antidepressants if I ask for them. The dose of the sleeping tablets is half what adults my age would normally take, but it's not recommended to take more because of the cocktail of tablets I'm already on and because of my heart condition. I CAN, however, start taking iron, which is one of the supplements used to treat RLS, so I'll see how that goes.

♥ The operation - four to six weeks away because of the need for the second surgeon who deals with "Grown Up Congenital Heart Problems." They only work at the hospital I'm going to a couple days a week, so I have to wait for a day the team is available. BUT, if my sleep problems can be alleviated, I'm okay to wait, AND the surgeon I met is keen to get in and do this surgery as it's more interesting than the usual stuff that comes across his table. (MRI doc said the same thing. Go me for being cool:)

♥ Finally, kids may or may not have any of this, but I don't need to even look out for it until they're at least 15. Doc thinks it's unlikely. So that's one less thing to worry about for now.


And completely off-topic, THANK YOU ALL FOR THE DRAGONS!!!

Comments

[nenne.livejournal.com]

I am very happy to hear that you feel well taken care of at that you will get the best treatment there is. *hugs* And yay for kids probably off the hook here. :)

You really shouldn't feel that you're complaining too much, I think you should tell us more about what is going on. AND if there ever was a time in your life when complaining should be allowed it must be now! Seriously.

[wwmrsweasleydo.livejournal.com]

Oh Baby! *hugs*

I knew you were unique and special, but it's a shame that that includes your circulatory system. You're holding up remarkably well considering. You're entitled to some whingeing.

Sleep is so lovely, and such a horrible thing to be short of. I'm really feeling for you. *more hugs*

At least it's unlikely to affect the kids. That's one good thing. And if it does then you know it can be coped with and cured.

Good luck with the op and with the time until then. Yay for doctors who talk to you like you're a person! So glad that you've got a good one.

[arineat.livejournal.com]

It sucks that you have to wait so long to get it all sorted, but at least you're more in the know now. *keeps all the things crossed for you*

[starry-diadem.livejournal.com]

Well, it looks as though you're in competent hands at last, and have a reassuring plan for your treatment. But hey, complain away! I really thing you're entitled.

Best of luck, Darry, and hang on in there. Only a few weeks and then, we all hope, you'll be good as new.

Take care of yourself and know we're thinking of you.

[delphipsmith]

...the nature of my condition - it had never been seen before...

I always KNEW you were unique, ever since high school LOL!! As you say, unique is good b/c it gets the docs intrigued therefore they pay great attention and want to work with you. Just think, someday you may be able to cite your own case in the BMJ!!

SO sorry about the non-sleeping. Chronic sleep deprivation can take a significant toll in all kinds of unexpected ways -- glad they're watching out for you!

Whine all you want, my dear, that's what flists (and of course f's!) are for. I send you much love and good karma; if the universe knows what's good for it, it will cherish and keep you safe until all this is resolved. Otherwise I'll beat the &*$^*$% out of it.

[fancypantsdylan.livejournal.com]

Aww, honey that's a lot to put up with and makes my own health problem seem very small, even though I think a leaking cyst out the back of my leg is the worse thing, LOL
Anyway, I hope it all gets sorted soon, my leaking cyst may have a few stitches in it by this time next week, yeah no more leakage for me :)

[franalan.livejournal.com]

It sounds like you're in good hands. I'm glad. And you're allowed to be grumpy!

[phoenixacid.livejournal.com]

I'm keeping all my limbs crossed for you!!! *hugs you tight*

[lijahlover.livejournal.com]

Thanks for the update I am praying for you and thinking positive thoughts.

I'm realived the kids may not get this.

*hugs close*

[coffeejunkii.livejournal.com]

i'm sending many good thoughts to you! i'm glad to hear that you're in capable hands.

[geneva2010.livejournal.com]

Well, that is all cool and interesting; easy for me to say from a distance. Much harder for you. I hope, hope you can get some sleep relief. Even one night without! Man, hang in there.

[calanthe-fics.livejournal.com]

:( So sorry you are suffering.

[winnett.livejournal.com]

Praying and thinking healthy thoughts at you. Be healthy, be safe, be happy, dear. *hug*

[goldylost.livejournal.com]

I hope you'll get better soon and will be able to sleep more

[alisanne.livejournal.com]

*cuddles you gently*
♥

[lore]

I still enjoy your Twitter, so you can't be complaining that much! Or, at least, you're complaining entertainingly. ~_^

*HUGS*

love, lore

[drarryxlover.livejournal.com]

I'm glad that the surgeon is approachable, some of them can be right twats!

And as for the twitter thing, I'm of the view that you can be as cranky as you want so long as you come out of it at the other end all smiles :)

[groolover.livejournal.com]

Just wrote a long comment but LJ swallowed it *thwaps it*

Short version: thanks for the update, hope you get some sleep soon!

[dark0feenix.livejournal.com]

Oh dear, this still sounds pretty scary. You're being very brave and awesome. *hugs*

[khasael.livejournal.com]

*hugs and luffs and hugs some more*

[mayfly-78.livejournal.com]

Well, hooray for finally knowing exactly what is wrong, but boo for having to wait so long to have it fixed!

Considering how crazy the situation must be driving you, I don't think you whine too much at all.

(Still keeping my fingers crossed that everything goes to plan.)

[teganscrush.livejournal.com]

You're handling all this with more grace and calm than I've ever seen from anyone. *hugs*

Thank you for my dragon too, sweetie, and heart - you're a doll to send them. I've fallen down on all that lately, got a lot going on too. But I am thinking of you!

[jtsbbsps-dk.livejournal.com]

I am so glad you finally talked to someone reasonable and that you like!!!

And I really really hope the sleeping pills and the iron can help you out! I hate that you feel so awful :(

Sucks about the long waiting time - but at least it's good to know the surgeon is keen as well.

*sends all of the good sleeping vibes*

[sesheta-66.livejournal.com]

*hugs you gently*

Oh, my, your poor heart. ♥

The mere idea of an MRI kinda creeps me out. I'm not claustrophobic, per se, but I do think that would be a bit much. *shudders*

I've lost a lot of sleep to restless legs, thanks to anaemia, but I at least managed a few hours a night, even at its worst. I can't imagine how utterly exhausted you must be from that alone, never mind your heart condition(s). D:

Here's hoping your babies escape the same condition.

*more squishes*

[privatebozz.livejournal.com]

Hey, I just wanted to tell you that I wish you LOADS of energy and strength for what you're going through. I don't know what exactly you have - to tell the truth, I had to skip through some of your entries after starting to read, because thanks to a very unpleasant hospital history of my own I've become somewhat oversensitive when it comes to stuff like this.

BUT maybe this helps a little: this horrible time I had, it only started getting better the moment I let go and made the decision to trust the surgeons. Even if they were fallible (and had failed before in my case) and maybe didn't care much about me as a person, I decided to put faith in them and put myself into their hands. I needed to, I was finished. Before, there had always been some unconscious part of me fighting them, dreading to give up control, but it became so bad that I couldn't go on anymore. I had nothing left. So I gave up, and that was the turning point. It was the hardest thing for me to do, but there was no other option. Looking back, I believe that this was one of the main lessons for me to learn.

A thing of major importance: dwell on some of the nice stuff you're going to do when you're better. I'm still amazed at how powerful these thoughts are. For example, when I was feeling really miserable I couldn't imagine anything more wonderful than sitting in a cafe with my sister, talking and drinking cappuchino. You know how much cappuchinos I had since then? Couple of hundreds, almost one per day - and back then I doubted I would ever feel normal again.

So what I've learned (mostly the hard way) is that diseases are no enemies. They want to teach us something, so it's important to face them, look at them. This needs some time and attention. But it's as important to go on. It's easy to become obsessed with your disease, to define yourself through it. I've seen people obsess about their disease, stuck there. Spending time in forums discussing their symptoms in detail, commiserating each other. I visited such a forum once - man, with every thread I went through I felt more ill. That can't be healthy. I'd choose the lunacy of the 'Supernatural' message board over that anytime...haha, and that's saying something! But well, on the other hand, I guess obsessing about slash pairings isn't very healthy either..

Oh, and I learned to really respect my body. It's *unbelievable* what this thing has gone through, and it still works so fine. It deserves a lot of love. :-)

It's really a challenge, what you're going through. I hope you're feeling good. My thoughts are with you.

Yara