Fighting off the dread....

[BrokenHearted]

About a year an half about I had an emergency Aortic Valve replacement. It came out of nowhere and really blindsided us as a family. It turns out that I had an infection from a C Section that I'd had 3 months before - and it had gone untreated so long that I had become Septic. Once I got to the emergency room for my IV antibiotics a Doctor came in to listen to my heart. I still remember the words "Has anyone ever told you that you have a heart murmur?" "No," I answered. "I'll be right back."

The surgery was a success but the recovery was painful and the way I was treated was not exactly ideal. Immediately following the surgery I had bouts with PTSD. Slowly but surely everything finally returned to normal(ish).

Two weeks ago I found out that I'm going to have to have my Mitral valve replaced very soon.

Immediately this sent my husband and I into a panic - who will look after our almost two year old son? What does this mean for my longevity (I'm only 29, I'd really like to be around for a while)? But worst of all I can't help but remember the pain and struggle of that first surgery. At least with that one I didn't have very long to think about it before it was already done - this time I have months of planning ahead of me. But I hate feeling depressed, I hate negativity, and I hate fear.

So, I've come up with a set of guidelines that I'm following in order to stay positive.

1. Focus on the end game - I'm trying to remember that after this surgery, after I recover, I'm going to feel a million times better and be that much more interactive with my son.

2. Plan the surgery like a vacation - Once we set the date I'm also going to be setting alot of other appointments. Before the surgery I'm going to get a hair cut (nice and short and easy to take care of) and get a manicure and pedicure with a pretty uplifting color. My husband and I are going to hit the best spots in town (we're going out of town so we're going to play tourist) and I'm going to get myself all new pajamas, robes, and slippers for the hospital. I'm not thinking of the icky stuff.

3. Right before bed have a happy things recap -It's too easy to mope and list all the difficult stuff right now so right before bed my husband and I turn off the T.V. and list only the happy/funny things of the day. It makes us both more positive.

I'm open to other suggestions - how do you fight off the dread?

 

[Heart Of The Sunrise]

The power of prayer and the belief that your surgeon’s hands are the hand’s of God.
That is what is getting me through this unexpected journey that I am on.
I’m lucky that I found out that I was born with a bicuspid valve and the issues with my heart that it has caused.
I am blessed that a routine EKG led to the discovery of my BAV. The pattern of my life and those close to me have led me to an excellent cardiologist and through him a gifted surgeon. Had this not happened I undoubted would have died from the potential fatal outcome that this all could have caused.
But I won’t die. I have so many reasons to be thankful my journey is far from over…I have good genes (except for my BAV) my mother will be 89 in February. I will be 57 in April. My surgery could fall on my birthday…that would be great. Keep your chin up put your faith in your surgeon and God…Be strong…you will get through this.

 

[katm]

Oh I know, I am not sure what to say to you. I am having surgery on Jan 7th and I am scared. I just keep telling myself that I am very fortunate to have had this found before it caused irreversable results. I agree looking at the end game and seeing yourself at the end of this journey and being able to appreciate the positive changes it will bring to your life. I often think of the horrible stories I seem to hear almost daily of the challenges that people are facing that is so much worse than dealing with this. This is curable and you will be able to live a long healthy with your family. Also put your faith in God, when it feels so overwhelming and you dont think you can face it, ask God to give you the strength you need. Take care and best of luck. This site is wonderful and very upbeat. Some people really get through it with not whole lot of pain, maybe we will be the lucky ones. Merry Christmas!

 

[pellicle]

I wrote a long reply, the system crashed and I lost it all

I will re do this later

 

[ski girl]

I've gone thru OHS twice, once under controlled circumstances (2010) and one emergency for acute endocarditis.

Before my first op I was actually EXCITED because I knew the outcome would be a functional heart that would allow me to do things I'd always wanted to do - like run, ride my bike up hills, etc. So tip #1 is to find a reason to get excited about the outcome!

Tip #2 - don't get new PJs and robe and slippers. That's what sick people wear in the hospital. Don't think of yourself as sick; you've had a big operation, but within a day or two they will have you up and moving around. I brought exercise pants, big tshirts, and my sneakers to the hospital, you will be very capable of putting these on and you'll feel like a normal human being which is important.

(BTW I was so determined to be NOT sick that I warned everyone not to tell me to get well because I WAS well, I was just moving a bit slowly )

Tip #3 - control what you can. Eat well, get some exercise (even just light walking), and if you're freaking out emotionally, see your doctor. This goes for before and after the surgery. And remember that the surgeons have been doing OHS for decades, it is a HUGE deal for each of us but for them it's just another day in the office.

One final thing, you'll be perfectly capable of washing, drying, and styling your hair so unless you particularly want it short, keep it! Gooooooood luck from down under!

SG

 

[Rebecca]

I had my valve replaced fourteen months ago. One book that you can get at the library and you need to read is Thriving with Heart Disease by Wayne M. Sotile, Ph.D.

 

[pellicle]

Hi

About a year an half about I had an emergency Aortic Valve replacement. It came out of nowhere and really blindsided us as a family.

I am so sorry to hear that you have become part of the 'club'.

I believe that you can fight off the dread by doing what you seem to be doing already: focusing on what you can achieve and being unafraid to communicate. Clearly things are very difficult for you, and as I'm sure you know many people here have been through difficulty to a similar degree.

With respect to your husbands panic I understand, but perspective can help. Before I go on I'd like to summarize my story so that you have some idea of the path I walk. This may help minimise any "you have no idea how I feel" reactions (even at an unconscious level).

I have had 3 Open Heart Surgeries, as I was diagnosed with a bicuspid aorta at an early age (like 5). back then (I was born in 1964) medical diagnostic machinery was of a much more low level than you can perhaps imagine today (where it is something off the bridge of Starship Enterprise).

OHS 1 - was a valve cut to attempt to make bicuspid tricuspid at about 11
OHS 2 - was a valve replacement with another persons valve (tissue donor) at about 28
OHS 3 - was a mechanical with an ascending aorta replacement due to an aneurysm) in Nov 2011

During OHS3 my father became 'ill' and required fluid drained from his lungs. He had been quite a perky fella given his age, and could still outwork a few fellows 40 years his junior. In the coming months we discovered he had a rapid onset undifferentiated cancer that ran through his body and was the cause of the fluid build up.

I was still convalescing from my own surgery while taking him to Oncology, Radiation, Palliative care ...

He passed on July 2012.

I still recall the discussion at my desk of "what do you want to do" from the doctor who asked me (as his primary carer) did I want to have more fluid drained from his lungs or not. Without the draining he would die from basically drowning in his lungs and or heart failure whichever came first. With the draining he would die in far more pain on morphine from the cancer which was eating his bones, liver ,spleen and lungs.

I opted to not have the fluid drained and my wife and I were with him almost every day till he died.

Then in August my wife, a fit young woman (33) went to visit her family in Finland. She was dead 2 days after arriving due to a massive seizure caused by a rapid and agressive brain tumor.

[insert bad expressions of darkness and negativity]

I can not begin to tell you how this has hit me. (if you are interested work backwards though my blog articles about that here)

In October of 2012 I started to find the irritation of my sternal wires growing (they never really settled after the surgery) and I found that I needed another surgery to 'debride' my sternal area and treat an infection (blog post).

A number of things have come to my mind as learning outcomes from all of my current mess.

• never think that life is like it is sold to us on TV, it is not
• noone can really help you (but they can support you) like you can. Only you walk forwards
• do not be afraid to feel. Feel bad, feel flat, feel angry. Cry your guts out on the floor, for you need this outlet.
• we never do anything alone, we always need to do things together to get good outcomes. Don't be afraid to accept help

I have come to find that "god" is of no use, and since I don't want to turn this into a theological discussion I will say that the teachings of Jesus as I understand them focus on what you do to help yourself not on sitting and waiting for god to carry you through.

I know myself that this is often very very hard.

I can only offer what I learned in survival training (and has carried me though in jungle hikes and frozen forests. "Just take one step" ... nothing more, don't aim too far ahead, for now is not really the time for planning. Just take one step.

The journey of a thousand miles begins with a single step

and so it must be with you as it is with me.

Slowly but surely everything finally returned to normal(ish).

yes, but sometimes its a false calm

Two weeks ago I found out that I'm going to have to have my Mitral valve replaced very soon.

Immediately this sent my husband and I into a panic - who will look after our almost two year old son? What does this mean for my longevity (I'm only 29, I'd really like to be around for a while)?

firstly I would say, don't die before you are dead. My friend was told when his wife (soon after they were married got rheumatic fever that she would only last a year. Instead she went on to have 2 children and became a grandmother.

so you just don't know. As equally that we don't know some one who it seems is perfectly healthy won't drop dead on a trip we do not know what will happen to one who is seemingly sick.

But worst of all I can't help but remember the pain and struggle of that first surgery. At least with that one I didn't have very long to think about it before it was already done - this time I have

I understand ... and that it is so soon makes it harder. No matter what, just make one step at a time. Even if you only make one step in the day.

But I hate feeling depressed, I hate negativity, and I hate fear.

yes, me too. I have tried to make a friend of the things I fear so that they do not become my enemy. They say all we have to fear is fear itself.

As you may guess as a child I was kept indoors (with my heart condition) so I became quite philosophically (and perhaps even theologically) educated with not much else to do with my time.

So, I've come up with a set of guidelines that I'm following in order to stay positive.

1. Focus on the end game -
2. Plan the surgery like a vacation -
3. Right before bed have a happy things recap -It'
I'm open to other suggestions - how do you fight off the dread?

I think those are good strategies. I would only add to that to not be disheartened if you slide backwards on the goals. Try not to include date specific things.

For instance I had hoped to close up everything here in Australia and go to Finland (where my wife is buried) and be there for the end of winter to ski in the forests where we have skied, but it seems that with the emergence of my infection that must be delayed.

I now hope to be there for August so that I can visit her grave again on the anniversary. Lets see if that happens.

Please feel free to post anything you want, blither about feelings or just express hope. If you feel it may be inappropriate then just PM me and I'll listen.

I wish you all the best outcomes, indeed listening to what you have said it is clear you have a strength and resolve which will help you through.

my best wishes with you and your family

 

[gerrychuck]

A great deal of good advice here. Like you with your first surgery, mine was also done on an urgent (emergent, actually) basis, so I did not go through the "waiting room" experience. Having said that, having the surgery in an emergency situation, when I was already in cardiogenic shock and heart failure, made the recovery much longer and more difficult than it might have been otherwise. I suspect that going in relatively healthy and better prepared will result in an easier and shorter recovery than you had the first time around.

I think we all wish this hadn't happened to us, but I think my surgeon put things in perspective when he was speaking to my wife about risks before she signed the consent forms for my surgery; he said "With surgery, there is a 5% chance of death, and he will be on warfarin for the rest of his life. On the other hand, without surgery there is a 100% chance of death before morning. Your choice". Pretty blunt, but it makes the choice pretty clear. I think it is always valuable to focus not only on the end game, but also the very unfortunate alternative to having surgery; what we are being given is the opportunity to live a long and happy life, to see our kids grow up, to see them get married (my oldest son's wedding is Jan 3!), hopefully to see our grandchildren. That's how I have chosen to look at it; all the positives of the second chance I have been given, rather than to dwell on the fact that I have to manage my INR and might not get my beloved pilot's license back. I don't know how or why I have been able to be so positive through this experience; it's surprised me to be honest. I suspect it is because I came so close to the edge that my family and I truly understood that my valve replacement was the only way to save my life, and that has coloured how we've looked at everything since.

I am sure you will do great, and be able to enjoy raising your child and seeing him grow up. This experience will hopefully be just a speed bump in the rearview mirror

 

[Jkm7]

Like some others here, my first OHS was emergent and I hardly knew what was hitting me I was so ill.
My second OHS was four years later and I had to wait about a month from being told it was necessary until it happened. That month was very difficult. I had the full range of emotions and anxiety and did not fool myself as to what lay ahead. At it turned out, the second surgery was so much easier on me than the first that I greatly regretted all that energy I had used in anxiety and dread. The first moment I woke from anesthesia in CICU, I immediately knew the truck had not hit me as hard this second time than the first and I had a smooth, relatively easy recovery.

Emotionally, I struggled though.
Only someone who has not been through it can say it's 'easy'. There is nothing easy about being the patient for OHS.
You are young and seems otherwise healthy and have every reason to believe you will do just fine.

 

[BrokenHearted]

Thanks for the advice, I am definately excited by the possibility of being able to breath and not feeling so swollen all the time. That's going to be amazing.

As far as the pajamas go, I may have forgotten to mention that I'm a pajama fanatic and use any excuse to get new soft, fun, comfy pj's. So I'm still going PJ shopping However, I love the advice of not acting sick and telling people not to tell me to get well. People have asked whether or not they can send flowers when I go to the hospital and I've told them no - I don't want anything that soothing. If they want to send something they can send funny balloons, nothing too sweet or sappy and no get well soons. But I'll take a happy face balloon or two

As far as the hair thing, after my first surgery it hurt like heck to have my arms up for too long and I definately didn't feel like dealing with it the first few days after the surgery while I was still struggling to get out of the hospital bed. So I'm going crazy short.

Thanks for the advice and the positivity!!!

 

[BrokenHearted]

Thanks to everyone....

Thanks to everyone....

Thanks to everyone for your wonderful replies and positivity. Sometimes it's so easy to get caught in the "why me, why am I the only one" mentallity and it helps to know that it's not just me. There are lots of us going through this, which means there are alot of people who know.

Thanks especially to Penicle for sharing - I'm sorry for everything you've had to go through. I'm sorry for everything we have all had to go through. But I'm happy to be here as I know you all are, and that's the thing that's important.

I recently discovered Cafe Press.com which is a T shirt site with silly things and am planning to buy myself a cute one with a heart with a bandaid on it to wear around the house. I like the imagery, it's simple. My heart has a boo boo . If only it were that simple, right? But still, I like the thought.

I'm still waiting to find out where my surgery is going to be. A doctor at Mount Sinai is looking at my file to see if maybe, just maybe, I might be able to have a repair. He's the leading authority so if he can't do it, noone can. If he can't and I need to have a replacement, I'll be going to the Cleveland Clinic. If any of you have personal experiences or advice about either of those locations I would love to hear it.

Thanks again everyone!

 

[katm]

I am having a valve replacement on Jan 7th at UofM and it has become clear to me that there must be many doctors that have become the "leading authorithy" or the "best in their field". lol Seems that I hear that alot from people but it is comforting to know that the doc you have doing your surgery is considered good. I've been having a bad couple of days, its getting close and no matter what I tell myself I continue to fall into the "woe is me" mood. I have cried for the all the victims in Connecticut, being a mother I cant imagine the pain of losing a child. So having this done seems minor in comparison.

 

[pellicle]

Only someone who has not been through it can say it's 'easy'. There is nothing easy about being the patient for OHS.
You are young and seems otherwise healthy and have every reason to believe you will do just fine.

and a +1 (google style) in agreement on this. Here here!

 

[Rebecca]

I feel that knowing about your heart disease empowers you. Some good videos on heart disease are found at http://www.heart-valve-surgery.com/heart-valve-surgery-videos-youtube.php Another heart forum for women is found at womenheart.org. I also like http://myheartsisters.org/ Most mitral valves are replace or repair with a small incision through the ribs.

 

[Jkm7]

I am having a valve replacement on Jan 7th at UofM and it has become clear to me that there must be many doctors that have become the "leading authorithy" or the "best in their field". lol Seems that I hear that alot from people but it is comforting to know that the doc you have doing your surgery is considered good. I've been having a bad couple of days, its getting close and no matter what I tell myself I continue to fall into the "woe is me" mood. I have cried for the all the victims in Connecticut, being a mother I cant imagine the pain of losing a child. So having this done seems minor in comparison.

Help me out, please.

I have noticed you say U of M several times and cannot figure out if you mean Univ. of Michigan, Univ of Mississippi, Univ of MA, Missouri ..... you get my point. :redface2: Which Univ of ?? are you referencing?
Thanks.

 

[Jkm7]

I feel that knowing about your heart disease empowers you. Some good videos on heart disease are found at http://www.heart-valve-surgery.com/heart-valve-surgery-videos-youtube.php Another heart forum for women is found at womenheart.org. I also like http://myheartsisters.org/ Most mitral valves are replace or repair with a small incision through the ribs.

In the spirit of a previous post in this thread, my Mass General well renowned surgeon (He really was among the tops in his field if he was a senior CardioThoracic surgeon at Mass General - Professor at Harvard Medical School etc) did full sternotomy for my mitral replacement. It was my second OHS and that may have been a factor. I'm not sure most are done with small incision between the ribs but then again, my surgery was coming up to five years ago, so that may have changed. Heart surgery advances so much, so fast perhaps that is now the case.

 

[Rebecca]

Dr. Alan Wolfe gives a good talk on valve surgery. http://www.nghs.com/meet-the-surgeon Having open heart surgery is very stressful and scary but so is giving birth to a child. Last year I had the (full) 6 inch insicion to replace my aortic valve, they are now also doing a small insicion for aortic valve.

 

[Mom2izzy]

My daughter was 3 when I learned that I would need surgery. The first thought I had was "what if I'm not here for her?" My next was "How will she ever understand why I can't pick her up for months?" Little ones are amazing! She wasn't old enough to be scared, so she kept our moods light through everything. She WAS old enough to understand that mommy had a big owie, so she had to be gentle. She was so excited when the restrictions were lifted and she could give me a fast flying hug (arms out, running full speed into my arms). We had been doing slow motion flying hugs . Ever since the doctor "fixed mommy" she has been determined that she is going to be a doctor too. I thought it was going to be harder to go through all of this with a little one...turns out that she made it easier (on her dad too)!

The big thing I tried to remember pre surgery was that worrying and stressing about it would not help the outcome. Actually, with heart issues, the stress can be detrimental. It's hard not to worry, but in the very minimal chance that the unthinkable happened, I wouldn't have wanted to be remembered as a big, old ball of stress. I did my best to keep the upcoming surgery out of my head, but at night when everyone else was sleeping, it could be tough. I was prescribed some ant-anxiety meds, and they helped. (NOTE: I rarely take anything stronger than aspirin, so this was a big step, but worth it!)

I thought about cutting my hair off too, but somehow didn't get around to it until after surgery. I would advise doing it before...when I finally did it about 6 weeks later, laying back into the sink for hair washing was uncomfortable for my healing sternum.

My biggest post-op issue was pain (made worse because Everything stronger than aspirin makes me nauseous)...not from my incision, but from the muscles in my back, shoulder and neck. I'm actually glad I couldn't take meds for it because one of the best ways to get it loosened up was walking. I may have been more lazy in that department if walking straight and tall, chin up, shoulders back, didn't help with the muscle aches. I think my recovery was faster because of it (walking and no meds to make me tired and foggy). A good massage also did WONDERS!

Hang in there and keep smiling!

 

[Rachel]

I just want to chime in here and I truly apologize for talking about something so trivial as hair.... but let’s face it, you know it is important on some level (and it's already been brought up).

IMO - going short (haircut) is the way to go and also, only if you need to do this -- I'm a little older than you I colored my hair just before my surgery and I'm really glad that I did that because I didn't feel like doing anything to it for at least a month afterwards.

I also made sure to take the nail polish off my toes and fingers someone told me that it might be better for your nails to be bare during surgery (but I forgot why). I treated myself to a manicure/pedicure after surgery (I also bought myself a new car..... but I also needed one at the time).

I did buy some super cute PJ's and I think it helped; in fact I did go on quite a shopping spree beforehand.

I really like your idea about going to bed with some happy thoughts, I think staying positive is the best way to get through this.

You will get through this.

I'll be thinking of you,

Rachel

 

[katm]

Help me out, please.

I have noticed you say U of M several times and cannot figure out if you mean Univ. of Michigan, Univ of Mississippi, Univ of MA, Missouri ..... you get my point. :redface2: Which Univ of ?? are you referencin

Thanks.

Sorry, its University of Michigan. Dr. Deeb is doing the surgery.