Going for Ross next Monday

[ravenhead]

hi guys,

been reading a lot of the posts on the forum & it's the best lace I've found in all my searching for info etc from other patients.
I'm 28 years old, with CHG, Biscupid Arotic Stenosis. This was found when I was four, & i've been for yearly/six monthly check-ups every since, I've had 2 Valvoplasty proceedures over the past 4 years & as I'm getting married on 1st June next year, I've decided to go from the op & get it over & done with.
I was supposed to be admitted to have it done on 27th July but 3 days before the hospital rang & cancelled as they had to use my donor valve for another patient in an emergancy. (Bit of a let off i guess!) So now I'm here waiting again for the call to confirm that I'm going in next week.
I'm so frightened. I'm going through a really low point at the moment. it's the what if's that I just can't seem to shake. I think the fact that i've been waiting so long to actually have the op & I suppose knowing as much about it, it makes it all that little bit too much to deal with.
I'm really trying to get over this low point, have any of you experienced this? If so how did you deal with it?
Any replies would be great - thanks a million

 

[John Turner]

Going for Ross next week

Going for Ross next week

I, too was born with bicuspid valve disease and had the valve stretched as a a child. Last year it was replaced with a pig's valve. The waiting for the op is by far the worst part, thinking about what can go wrong, but once you are in it is all over so quickly - I was out of hospital in just under a week. do try eaat well and go in as fit as possible. The nurse told me to have extra protein before and after the op to speed the recovery.

Have you tried the web site for chd patients in the UK ? www.guch.org.uk
You may find their message board helpful as well
Best wishes
John Turner

 

[ravenhead]

I, too was born with bicuspid valve disease and had the valve stretched as a a child. Last year it was replaced with a pig's valve. The waiting for the op is by far the worst part, thinking about what can go wrong, but once you are in it is all over so quickly - I was out of hospital in just under a week. do try eaat well and go in as fit as possible. The nurse told me to have extra protein before and after the op to speed the recovery.

Have you tried the web site for chd patients in the UK ? www.guch.org.uk
You may find their message board helpful as well
Best wishes
John Turner

HI John,

thanks a million for replying, I've taken a look at that website & yeah it's pretty good. I wish it was this time next week & it was all over. I'd love a good nights sleep

 

[Ross]

The waiting is the killer! Everyone has said the samething. Oddly enough, once your in the doors and on your way, a certain peace comes over you and your fine. Do the best you can to keep it together until then. Use us for support. Go out and treat yourself to some things that you've never done and wanted to do. Live it up.

 

[Turkey Hunter]

Welcome to this site. You will find most are very willing to be helpfull when you need it.

So far, you have been told correctly, waiting is the worst part.
Take a deep breath and relax, you are in good hands and all will be well very soon. Just don't overdo it post op. Mind the doctors and their instructions.

God Bless,

Ben

 

[StretchL]

You'll Be Fine!

You'll Be Fine!

Cliche, I know... but you will. And think how much better your quality of life will be once your come back down the mountain! Keep us posted?

 

[Marguerite53]

Welcome to this wonderful community!!

See how many of us there are? Most of us are doing great.... really..... wonderfully well! Our surgeries are definitely memorable because we've all had challenges of one sort or another. But honestly, truly, and with all the sincerity I can muster........ it's not that bad!

I'm sorry that the donor valve problem exists for you. That would be quite frustrating to be put off. I thought a Ross meant they used your own valve. Perhaps you could elaborate on that for us.

Please start to breathe very deeply, exhaling being the part we all seem to forget when we are stressed. Take time to do some fun things, as Ross suggested. Start walking? find some good places to walk (flat and close to home at first) so that you?ll have that all mapped out after your surgery and you can start soon to rehabilitate with the progressive walking.

If you are having trouble sleeping, then please compensate for that by eating properly and getting plenty of nourishment ?.. you don?t want to catch a bug!! You might ask your doctor for a sleep aid, or something to calm you.

It is hard. It is!! We all agree! But if you can find a way to relax and trust the good doctors; smile on your way in; feel the grace of promise at your door; you will get through this just fine!! Honest!! Optimism is a very VERY powerful thing. Please muster up all that you can in yourself. It will be a good friend to you.

If you have questions that are nagging at you, please feel free to start as many new threads as you need to get them answered. We?re right here!!

Good luck. Thanks for joining our group!

Marguerite

 

[Phyllis]

Welcome to the site. I put you on the calendar for next Thursday- let us know if the date changes again- I hope not! I hope you find all the information and encouragement that you need here and look forward to hearing of a successful surgery for you.

 

[teri]

Hang in there! My husband and I are basically in your position right now. He is scheduled for the Ross this coming Monday morning in Indianapolis. We are fully immersed in the anxiety stage right now, so I choose to believe what everyone says about waiting being the hardest part. I can't imagine it getting much worse than this! Below is a link to our blog. I plan to have one of my kids post to the blog after surgery. If you'd like to visit it and read about how well the surgery goes, you are welcome to do so. Hopefully it will give you some peace of mind as Thursday approaches. Best of luck to you!

http://djmargason.blogspot.com/

 

[Granbonny]

Hi Raven

Hi Raven

You will be fine..Ireland? ..We have 1 member from there..Hope the weather will be good for you to take outside walks after the first week at home. Slow walks helps get the nasty drugs out of you...Food will taste yucky..so have lots of juice on hand for first week.Sleeping the first few weeks too. Do you have a recliner?If not, just lots of pillows..to prop up in bed. Take the pain meds they give you..Even if you have slight pain..they will help you walk. Bonnie

 

[ravenhead]

thanks guys for all of the great replies, it great to hear from people that knwo exactly what I'm going through. Still no word from the hospital so far today so I'm going to ring them at lunch time just to get everything confirmed. My family are getting a bit anxious about booking into hotels etc. Just to answer the question by Marguerite53, yes they do use your own pulminary valve to replace the aorta & then they use the donor valve instead of bovine for the pulminary - they call it a homeograph. It's supposed to last longer.
Teri I hope everything goes well on Monday, You'll both be in my thoughts & prayers.
Thanks again guys, it's really good to be able to talk about my crankiness to people that understand!!!

 

[Mary]

Ravenhead's surgery tomorrow

Ravenhead's surgery tomorrow

Ravenhead,
I think Dublin, Ireland is six hours ahead of our time, so you may have left for the hospital by the time this thread is started.
If you're still at home, I want to take the opportunity to extend my heartfelt wish that you have a very successful Ross procedure and an easy recovery.
You are in my thoughts and prayers.
Mary

 

[Phyllis]

Hope we haven't missed you- best wishes for a successful surgery and uneventful recovery

 

[bvdr]

Ravenhead, you are in my mind, heart, and prayers as you progress through this week. May God keep you safe.

 

[Granbonny]

I will be thinking of you also..Bonnie

 

[Karlynn]

I hope you know that you are in all our thoughts!

 

[gijanet]

Just sending our hugs and prayers, too.

Just sending our hugs and prayers, too.

I hope she has someone to update us. Hugs. J.

 

[ravenhead]

hi guys,

I'm so sorry that I haven't been in touch, it's been a mad week, My op got cancelled at the last min, so work decided to send me to Amsterdam for the week only just back! (I guess it's a good thing at least I couldn't think about being cancelled - which I was pretty upset about) So just sitting here now waiting for the call again! Hopefully it's going ahead next week, I'll keep you all posted, thanks a million for all the posts, it's great to know that I'm not alone

 

[aussiemember]

Sorry to hear your operation was cancelled. Let us know when it goes ahead so that we can keep you in our thoughts.

 

[ravenhead]

hi guys, just to keep you all updated. Well I was supposed to go in for the op last thursday - 31ST, but I got a call last time friday evening in work to let me know that it had been bumped again, so when I told them at work that I wouldn't be finishing up as thought they decided to send me to Amsterdam for the week instead. This was a good thing because I think if I was at home I would have driven myself mad worrying & thinking about the op. So now I'm here in work, just waiting for the call again. Hopefully I will know either today or tomorrow. I'll keep you all posted.