Any tips on dealing with the stress

[SusQ]

My husband was diagnosed in August 2011 at age 46 with BAV with root dilation. We know he needs surgery and he's had a lot of tests to help determine when, but this whole testing and then waiting to hear back with results is frustrating. His cardiac cath was today and we are overjoyed at the fact that there were no blockages found, but now we are waiting for a surgeon to look at it and make a determination as to when he should have surgery. I erroneously thought that we'd know a firmer schedule (so far we've been told within five years) when we met with his cardiologist after the cath, but they canceled the cardiologist consult appointment and sent us home with a, "They surgeon's office will call in a few days". I'm not proud, but I do remember uttering, "So what the hell does that mean?" at the nurse. Of course, not only was it not her fault, I knew what it meant...it meant we still don't know. His diagnosis and testing (so far) has been through the VA which has been my husband's primary care for the past decade or so.

I should note here that we are requesting all his medical records and will be seeking a second opinion from another doctor outside the VA. That has also been a stress, as we are coordinating this from 350 miles away, and the private doctor/hospital is moving at a much faster pace than the VA (I'm not particularly surprised at that).

Anyhow, to keep this short, this post all boils down to the whole unknown bit eating at me. It's hands down the most stress I've ever had to deal with and while I can manage it pretty good during the day when I'm awake and busy, the nights can be awful. Between the difficulty falling asleep and waking up with my own heart pounding so loud I can't believe he can't hear it, I'm not getting a whole lot of shut eye. I had to do the driving home today (275 miles) and took a little cold medicine I knew would knock me out last night so I wouldn't be tired after the long hospital day, but it's not something I want to do often.

Any suggestions from those who have BTDT?

 

[Lionheart]

I erroneously thought that we'd know a firmer schedule (so far we've been told within five years) when we met with his cardiologist after the cath, but they canceled the cardiologist consult appointment and sent us home with a, "They surgeon's office will call in a few days".

SusQ,
When did someone suggest that surgery might be 5 years away, was it during the original diagnosis of BAV in August 2011? I think that if your cardiologist performed a cath. then it means that surgery is probably close, that is, within a few months. But maybe the results of the cath. were not conclusive and the cardiologist wants a second opinion about whether to operate now or wait a little longer.

Waiting is the worst part because you are not moving forward with action. I suggest that you start planning for the operation by reading the two 'sticky" threads in the Pre-surgery forum, especially the "Questions to ask the surgeon". Make a plan of action for the week-long hospital stay and start preparing. If it turns out that he doesn't need it right now, well you've done your homework and you will be more prepared when he does have surgery. Take control of the things over which you have control. For example, does he smoke? If so then now would be a good time to quit.

Finally take care of yourself. Sleep is important, see your GP for a prescription to help you sleep.

I hope this helps. Take care,
John

 

[Jason]

I agree with John. At least from my personal experience and from what I have read, they suggest caths for two primary reasons. First, if the echo wasn't conclusive but pointed to a potential for surgery soon, they will run a cath to visually verify their findings. I think they will also do a cat scan to confirm, though. The other reason was to check the cardiac arteries prior to surgery, to see if they need to plan a bypass while they are in there. In both cases, my guess is that this means that surgery will be sooner rather than later. Again, this is only based on my experience and hearsay, so perhaps someone else will come along with other experience. I agree, though, that you should start preparing in either case. It is best to know what is coming and not need it rather than need to know and not have it.

Let us know how this all works out for you, and welcome to the site.

 

[Mentu]

John & Jason have given you good advise. Learn what you can and begin thinking about the things you will want to do. I might also suggest a book for you that my family doctor recommended to me.

Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues

It addresses some of the very issues you have raised. While a patient has surgery, the family also experiences much of the anxiety. I found it a good read with some good ideas for dealing with the anxious periods before surgery and after.

I know how difficult this is to do but try not to speculate about how things may be. Deal with the facts. I think you are right to press for those facts and, especially, to obtain copies of the medical records and, most certainly, the results of the heart cath. It is hard not to become frustrated when dealing with a bureaucracy such as the VA. I find it helps to think of the search as more of a puzzle. The one thing I do know is that being calm, polite, and very very persistent helps a lot. When you speak with people, try always to get their names and ask if you can call them back personally not just redial the same number. If you are persistent, you will likely find an advocate who will help. Speaking of advocates, have you tried the Ombudsman's office at the center where your husband receives his care? As well, there is a Chaplain's Office also who can sometimes help direct you to someone more helpful.

Do keep in mind, however, that the results of the heart cath may show that your husbands heart valve is not yet serious enough for surgery. This happened to me a year before my AVR. If this is the case, there are other things you might consider doing. Seeking a second opinion is one. Another is keeping a health journal to try to be more sensitive to changes such as the appearance of symptoms or their worsening because the heart valve can change rapidly once it is seriously degraded. Finally, you are both welcome to share your frustrations here in VR where we speak your language and understand how you feel.

Larry

 

[Bill B]

When I first received my diagnosis and entered this new great unknown with my first potentially serious medical issue in all my 60 years, I was rather stressed by it as well. I did not understand how the disease normally progressed, how predictable the course might be, and whether I could do something to alter the course. I was lost in a sea of questions and concerns. So, I started reading about BAV. Over time I learned there was not anything I could do to change it but that ultimately whenever the surgery did happen, it was overwhelmingly successful, remarkably safe and would leave me with the same life expectancy as anyone else who did not have this problem. That's pretty good news. So, I encourage you to research what is wrong with your husband and try to help him understand his illness and get a handle on what to expect. In doing so, you will be better equipped to deal with it and probably feel less stressed about it. There are lots of resources here and only a Google search away.

 

[Paleowoman]

John & Jason have given you good advise. Learn what you can and begin thinking about the things you will want to do. I might also suggest a book for you that my family doctor recommended to me.

Coping with Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional and Practical Issues

I second the recommendation to read this book. I got it for both myself and my husband when my cardiologist said that I would probably have surgery in about two years time (that was last year). The book has specific chapters addressing the concerns and stresses of family and in particular the family member closest to the patient who will be, in effect, their main care giver and spokesperson. My husband was really glad to read the book as was I.

 

[SusQ]

Thanks everyone. I just ordered the book and am looking forward to reading it.

In August 2011 at his first diagnosis after a regular echo we were told he'd probably need it when he was between 50 - 55, because that is all the longer bicuspid valves generally last.

The estimate of one to five years for his surgery was given to us after his transesophageal echo in December 2011. This is also when the cardiologist put in the order for him to have the cardiac cath. Unfortunately no one told us that this meant surgery was likely close. We were told it was just "the next test that needed to be done". Oh, and don't even get me started on what we were told just seconds before they took him in for the cath itself (that they would just do the surgery if he had severe blockages because they only wanted to go in once). It just seems like we are finding out key information AFTER the fact and it is very frustrating.

I'm really looking forward to getting all his records and forwarding them to the surgeon of our choice who we expect will be performing the surgery. It's just getting those records has been at a snails pace, whereas the surgeon's office we've chosen for the second opinion (and likely surgery) wants them, well, yesterday.

I know we'll get through this and he will be fine; I really am a glass-is-half-full kind of person. It's just the path to the end result is testing my positive attitude.

 

[sarahsunshine]

I am the step-mom here, so I know a little bit about being the person helping out. In my situation we have 3 adults to “help out”, however I was the only one to do the legwork and research. Fortunately, we already knew who the surgeon would likely be a decade ago, so that part was tossed out of the equation.

I am going to deal with the stress issue. I am the type of person who needs to know everything and researches all, and what the details and unexpected circumstances could be. Then, in case I need it, find out where I can get that information in case I need it at the last minute (and I used it when we were told during the surgery that my stepson had had his ascending aorta replaced by a graft – a complete surprise).

However, as much as I am a “need to know” person, it is also important not to find yourself completely consumed by it. As much as this is huge, there are other aspects to life. You need to come up with a plan on how to deal with your stress.

One thing that I found really helped was that I would put aside a part of the day where I could research (lunch hour usually at work). Then I would talk to DH about what I learned (while preparing dinner). But then when those thoughts would come up, I would make a mental (or physical) list about what to research, or what to talk about at those times. What this meant was that as much as I spent time making lists, I knew I would address the issues at a particular time, so I didn’t need to worry endlessly about them.

Some other things you could do if you find you are really stressing, are:
- Start meditating (or practice regularly)
- keep a medical journal for your husband
- talk to a counsellor
- discuss this with your husband – are you trying to do all the work and not letting him take some of the initiative? Does he know how stressed you are about his condition?
- are you the type of person who gets stressed out easily? Is this something new, or do you deal with this regularly? It may be that you need to talk to your doctor about this.


In terms of a time line, my step son had several cardiac caths in the 4 years before his surgery. I wouldn’t count on the fact that “it will be soon”. My step son had cardiac caths simply because the results of the echos were odd. Then again he had a mechanical MV and regurgitation of the AV, so the pressures got confused on the echo between the two valves. Likely your husband’s case is more straight forward, however keep in mind that the cardiac cath is much more precise than the echo.

I do agree that the transfer of information that you seem to be getting is abysmal. I would not be happy with that AT ALL, and might transfer my care for that reason entirely. Is there any reason that you can’t transfer care immediately?

Lastly, have you talked to your insurance to be sure that this can be covered under private care? I know many people have problems with insurance coverage and hope that you can get things organized now so that it doesn’t cause you problems in the future. That, too, coul help ease your mind.

 

[Lionheart]

SusQ,
I second the idea of sarahsunshine to "keep a medical journal for your husband" It's a great way to track information and keep track of doctor's names and phone numbers and what they say to you and a list of questions for each appointment of which you will have many. You will want to keep it up to date during his hospital stay because it will provide a record for him and you after it is all over. He may want that record to help recall all the things that happened when he was not completely with it.
John

 

[SusQ]

Sarah,

Great tips, thanks. Some I've already started. I don't generally get stressed very easily, but I'm also completely medically boring and have never had my own personal health crisis. My mom did, and I just jumped in and took care of whatever she needed and leaving my worry for later, but for some reason dealing with hubby's stuff seems harder.

Love the medical journal idea. Not sure why I didn't think of that myself because I keep lists for everything, must have been too obvious. I did buy a notebook when went for his cath because we had a couple thoughts that we needed to write down, but I'll definitely dedicate that just for this purpose. Though I'm going to have to carry it with me everywhere.

Yes, hubby knows I'm stressed. We did discuss some things that had to be off-limits for me, such as discussing it as we were going to bed/laying in bed. It just gets me thinking when I'm trying to relax. He's a fantastic husband and completely understood. He's doing as much, if not more, research than me. He's proactive in this (really, he's like a dog with a bone, lol), though to keep confusion down, I am the point of contact with the new surgeon's office. Hubby also doesn't hear well on the phone, so it's just easier this way and I have no issue with this. It isn't like he's just letting me deal with everything and sitting back.

As far as transferring him, he kind of already is because he is not having the surgery done by the VA. This cath was really the last thing I figured the VA would be doing until it's surgery time. I've been in contact with the private surgeon's office, but it's all hinging on them getting my husband's medical records. The scheduling nurse for him will be calling me next week to schedule a phone conference with the surgeon that will occur after he's received the medical records and had a chance to review the results. My insurance will not pay for duplicate tests, however I did check with my insurance and once the deductible and co-insurance payments have been met, it's covered 100%. Fortunately we knew about hubby's condition and potential immediate medical needs when I had to choose insurance plans this year. The drawback was a higher deductible and co-insurance, but the coverage is excellent. This is part of why we let the VA do the cath; they will charge my insurance and take what the insurance pays, but not charge us for what they don't. I haven't seen the billing yet, but based on what I saw for average costs on the insurance company's website, the cath will eat up the entire $500 deductible and $3000 in co-insurance for out-of-network procedures. A small blessing in all of this. I just wasn't counting the VA taking so damn long.

 

[escargome]

Hi SusQ, well, just make sure you keep your glass half full all of the time. Dealing with the VA is akin to drawing the Mona Lisa on a rock with a tooth-pick. At times they have so much red-tape they get caught up in it themselves. Just be a pest and keep after them to send the test results. You seem to have all your ducks in a row and I commend that. When my husband had his by-pass surgery I believe I knew more about the entire thing than his doctor did (I had questions and pictures and more questions). If my family doesnt totally understand something medical they come to me. It never hurts to understand how our bodies function. In any case, keep givin' um heck and hopefully your hubby's surgery will go off without a hitch...

 

[SusQ]

Dealing with the VA is akin to drawing the Mona Lisa on a rock with a tooth-pick.

Right?!

And today hubby heard from the surgeon's scheduling nurse who said the time frame for the surgery isn't up to them, it's up to the cardiologist (combined with his symptoms which only show up when his blood pressure goes up). ARG! lol

Guess who he is calling bright and early Monday morning?

 

[bbuck]

SusiQ,
To deal with the stress, try waiting on your dear husband hand and foot, pamper him as much as you possibly can, I'm sure he deserves it. This will make YOU feel oh so much better.
Love you
Bbuck

 

[Boston Tiger]

SusiQ,
To deal with the stress, try waiting on your dear husband hand and foot, pamper him as much as you possibly can, I'm sure he deserves it. This will make YOU feel oh so much better.
Love you
Bbuck

Thanks for the good laugh!

 

[SusQ]

Thanks for the good laugh!

That's my loving pain in the...uh, husband. :biggrin2:

 

[SusQ]

Larry,

Thanks for the book recommendation. My copy was delivered on Friday. I'm about halfway through it and am already very glad I bought it. I keep stopping and telling Bill about things as I read them, even though he'll probably read it as well.

 

[Marguerite53]

Hello. You've gotten some great advice and not much for me to add. I love that you are getting a second opinion and that you are actively working to find the right way to "do" this.

I think it all boils down to having faith and trust in the physician and hospital you have chosen. When you walk in confidence because you have exhausted yourselves making the best choices possible, you will be able to hand things over. Those "guys" do this stuff every day. EVERY DAY!! Sure, they have their tough cases, and their bad luck, but for the most part they honestly do know what they are doing!! Every day you probably get into a car (with far more statistical risk!) and drive all over the place. You were much more aware of your vulnerability in a car when you first learned to drive. Then, as you got more experienced you became confident and pretty much forgot about the risk.

You will find yourself in this confident space soon. You will always have questions and concerns that no one seems to be able to answer for you. But we all have stumbled along and made it to this moment; sitting in front of our computers together.

Find time to laugh. Really make an effort. I needed that. I needed to hear the laughter in my mind when things got scary. Go out into nature a little. I needed the sound of birds and visions of puffy clouds. Put the enormity of it aside; just put it in a zip-loc and stick it in the cupboard. You'll know where to find it if you really need it, won't you?

You are really doing a great job of helping your husband. You will never get all the answers, you will never get it all done. But the day will come when you will be able to hand it all over.

Best wishes

Marguerite

 

[SB42]

Without knowing your faith or trying to push mine on you, something that my pastor told me to help me with my sleepless nights or waking in the middle of the night with high anxiety was to lay there with my eyes closed and simply repeat, "Dear Almighty Lord, please have mercy on me." It worked (for me) and I was able to regain my much needed rest. Hope this is helpful.

SB42