Waiting Room Rule List

[The Thief]

Hey everyone. I just wanted to post my recent blog post here since it relates so much to THE WAITING ROOOOOOOOM. I created a 'WAITING ROOM RULE LIST' that I have realized along the way. Please add any important rules to this thread so that I can incorporate them into my blog post!
http://robovalve.wordpress.com/2013/10/17/waiting-room-rules/

 

[Eva]

I hope I'm not redundant, as I didn't read your blog yet.

What I remember from all my cardios is

- watch out for increased fatigue symptoms
- running out of breath more than before
- With aortic insufficiency, monitor your blood pressure...the lower it gets, the worse is your insufficiency!

 

[big_L]

Well done!

 

[ski girl]

Can I add: do not over dramatise this. It does you no good, so cut the 'woe is me I'm in such a horrible situation" crap . You will come out of this surgery and be much better physically than you are now, there are many conditions you could have (i.e.. all cancers) where there is no such certainty.

But this rule can be combined with your rules 1 and 9.

 

[Midpack]

Waiting Room Rule List

I am not so sure about 10 (do your own research). Excessive googling just leads to anxiety and fear. Every health problem looks scaring and potencially life threatening if you google it.

Reading some serious patient oriented articles is ok. Reading forums like this one is also good, because of the support you receive. But digging into papers intended for cardiologists is not a good idea, even if you can understand most of what is stated. I have done it a lot. And, at least in my case, it increased my fears.

Good list anyway!

 

[T in YVR]

Another one I would have considered more in hindsight: For *most people*, your condition is not going to change overnight while you are waiting.

One of my bigger worries was how my heart/aortic valve may have been deteriorating over the 9+ months I was in the waiting room. I had severe regurg and a moderately dilated left ventricle when diagnosed. Over the course of the time I waited, my condition didn't change (in fact my left ventricle dilation dropped by 3mm oddly enough). I was unnecessarily worried about how much worse my condition might be getting. The reality is that for most people, you stay in a fairly steady state for quite a long time. Trust your doctors - they will operate on you before things get real bad. Now, if you have a lot of symptoms or they find an large aneurysm that needs to be addressed, it maybe more urgent, but your time in the waiting room will be a lot shorter.

 

[Jkm7]

Can I add: do not over dramatise this. It does you no good, so cut the 'woe is me I'm in such a horrible situation" crap . You will come out of this surgery and be much better physically than you are now, there are many conditions you could have (i.e.. all cancers) where there is no such certainty.

But this rule can be combined with your rules 1 and 9.

You are SO SO SO right.

 

[Heather Anne]

I love this list. I third the "don't over-dramatize" point. Also, here's something I kept saying to myself as I waited: "It's going to be two really unpleasant days. You can handle two really unpleasant days." And you know what? That's all it was. Sure, there was discomfort and movement restrictions and all sorts of other stuff that wasn't a lot of fun that came afterwards, but the worst of it, by far, was over and done with in two days, and that's how it is for most people.

Also, enjoy your recuperation. I know that sounds weird, but it's not often in life that we get the chance to step off the moving walkway for a while. Instead of looking at your recuperation period as this giant inconvenience that's going to complicate your life, look at it as an opportunity to slow down and relax. Try to really enjoy the 4-6 weeks when you can't drive, can't work, can't vacuum, can't unload the washing machine, and can't mow the lawn. Let your coworkers cover for you and your loved ones take care of you. Read books, watch old movies, binge-watch a TV show you always wanted to see. It is a rare opportunity to spend quality time with yourself and your loved ones. Relish it.

 

[The Thief]

I totally hear ya Midpack. Good point. I would agree that excessive research can be bad. I think this might depend on the person. Though I know I have freaked myself out occasionally by doing this research, I am still glad I took that approach. I think I actually feel better by understanding the science. This would be a great topic for thorough discussion that all of us have experience in.

 

[pellicle]

Though I know I have freaked myself out occasionally by doing this research,

Ouh yeah ... I still can't watch open heart videos ... happy to help skin the rabbit / sheep / moose though....

I also quite like research, however the information takes time to digest and grasp in context. So while data may come fast answers and understanding are slower ...

 

[OldManEmu]

Having done the surgery thing more than once.
I wouldn't place all my support in anyone that hasn't been through heart surgery.
Exercise in the interim if approved by surgeon or cardio. I ran a couple of Km's the day before my second surgery this is what made it all the more surreal to me.
I am also a researcher, forewarned is forearmed is my motto.

 

[AZ Don]

Remember what an excellent prognosis there is for diagnosed BAV and aortic aneurysms. Many people are not so lucky to have an illness with a cure rate that is what, 98% or so?

 

[epstns]

And. . . my favorite way to control the anxiety leading up to surgery is to do the following:
1. Develop The Plan. Decide the date, hospital, surgeon, type of procedure, preferred type of valve, etc. Get all your pre-admission tests scheduled. Get all the pre and post op details worked out.
2. Work The Plan. Once the plan is made, do not change it. All the tough decisions are made. All you have to do is be there.
3. Live your life as normally as possible until something in The Plan is scheduled. Do this task and just get on with life.

This was how I managed the weeks just prior to surgery - after nearly 10 years in The Waiting Room. I became almost surrealistically calm during the week just before surgery.

Oh, and there is one more point:

4. During and after surgery, be ready for just about anything. Things don't always work out like the pamphlet says they will. My own train-wreck of post-op difficulties proved this for me. But have complete faith in your chosen care team. Remember - for you, the patient, this is a life-changing day. For them, it is just another day at the office. Whatever happens, they have seen it and know what to do for it.