I thought I was ready, but truth be told.......

[jake]

Speaking as a person who knew he had a BAV as well as an ascending aortic aneurism, surgery was always a certainty. Mentally, I should have been prepared for what came next. All was pretty steady until last Sunday. The chest, shoulder and back pain started and off I went to the ER. After a new CT, a cath and a TEE, my ascending aorta has reached 5cm.

Over the last year, I went to a few hospitals and eventually, I ended up at the University of Michigan to see Dr. Deeb. His background is impeccable and this team is simply amazing! Dr. Deeb tells me my BAV is 100% functional and working perfectly. He strongly suggests leaving it alone and I agreed with him. He has given me a December 3rd surgery date. The pre-surgery tests and Pre-op meeting set for November 15.
It has hit me like a brick! I knew this day was coming, but now it’s just become surreal! You think you know how you’re going to react when your surgeon tells you its time, but I really wasn’t ready for how I would feel.

I’ve been getting all my ducks in a row at work, teaching my kids how to use the snow blower, setting up a bed on the first floor, man! I just don’t know what to think. This site has made this about a thousand percent easier, made me better prepared and most of all, helped me to find just the right doctor and hospital for this surgery. I’m putting on the brave face for my family but truth be told, I’m scared!

 

[Penny]

Hi Jake..
what you are feeling is only natural.. I was totally freaked out once they told me it was time.. I think for me it was the unknown of what was really going to happen. It sounds like you are getting yourself prepared and that is great.. keep busy it is the best thing to keep your mind at ease.. we are all here to give you the support you need.. send a msg if you have any questions.. take care

 

[Greg a]

Hey even this goofy Canadian has heard good things about your team....your date is noted on the calendar so your VR family will be with you in spirit




.

 

[kfay]

Jake, If you weren't scared, you wouldn't be normal. We've all been in your shoes. Waiting, for me, was worse than the actual surgery itself. Hold on, it will be here before you know it and then you'll be able to take a deep breath and it will all be over and you'll be well on your way to feeling better. If you have any questions, ask away, someone has usually experienced it.

Kim

 

[nngbwh]

Heart surgery is a major operation. Being scared is normal. Good luck with surgery and keep us
updated. You will be fine.

 

[scott.eitman]

Hold strong. This is going to be a long month and a half. From experience, I was consumed with making decisions about valves, teaching my daughter to use the riding lawnmower, trying to get projects done at home, work... Just do your best and you will get through it. The little tree, that I did not get to, in the gutters finally died well after surgery.

Like everyone else is saying or will say, this is completely normal. The nice thing is; we are all here getting through it together.

If you haven't been through it, it is hard to understand. I have been through it twice and yet I do not believe my wife could really fully understand.

 

[Lionheart]

Jake,

I monitored mine for 10 years and always thought it would happen sometime in the future. Well the future often pops up before you know it, doesn't it? It sounds like you have a good surgical team and a plan for action. Glad to see that you are lining up those ducks too, those things give you a sense of control and accomplishment and will make the post surgery recovery easier. In the weeks just prior to my surgery, I was on autopilot and eventually reached a point of inner calm. Being scared is normal, but you will get through this and you'll be a healthier and stronger person because of it.

Best,
John

 

[Mentu]

Hi, Jake. There are always more than one way to look at something. On the one hand, valve replacement by a great surgeon in a good hospital is routine and relatively safe. On the other hand, for many of us it is the most significant health problem that we have faced. For me, the idea that someone was going to open my chest and operate on my heart was many things but it was certainly NOT ROUTINE. Try to keep in mind, however, that the bad part in all of this is the heart disease; surgery is really nothing because you are not aware that it is happening and, afterwords, recovery can be a wonderful experience as you explore your new lease on life. It is scary but it is going to be OK.

Larry

 

[bigsidster]

I feel for you Jake.I have an upcoming AVR and I am also a little anxious.We always imagine it is worse than it actually is.Just conscentrate on the good food you will be getting at the hospital.

 

[Lynlw]

You sound perfectly normal to me. I'm glad you are using this time to get all your ducks in a row. I don't know how large (many stories)your house is, but if you just have to go up 1 flight of stairs to get to your bedroom, It probably isn't neccessary to move a bed to the first floor. Most people have no problems going up stairs (just can't grab onto the rail and pull your self up) and many hospitals will ask IF you have steps at home and if you do, they make sure you can go up and down with out a problem before they release you.
Some people DO prefer to sleep in a recliner the first week or so.

I'm glad you decided to post here since you were getting nervous, it really helps to be able to talk to others. who understand.

 

[Maryka]

I walked around knowing surgery was in my future for almost 20 years. Then I waited until my heart was so bad that I could only walk about 15 feet without stopping to catch my breath. It is really worth it to have the surgery, but you may not feel that way for a couple of days afterwards, ha ha!

 

[jeffreydc]

Hi Jake,

I definitely understand where you're coming from. Last month I was told that I would also need my ascending aorta replaced, so after 12 years of monitoring it, the day is quickly approaching. I, too, am definitely "on edge", however I've found that by talking with others who have gone through it before has helped me tremendously. Even though I'm not looking forward to it, I'm getting more comfortable with the idea. So my suggestion is to try and find members here on VR to talk to, especially ones who have had your surgeon. It definitely helps!!

Jeff

 

[jake]

I got a huge envelope from U of M today with all my pre-operation testing appointments and tests. Blood, urine, breathing, a detailed physical, chest X-Ray, and finally.....the pre-operation meeting with the surgeon for Q&A. I got my FMLA papers done, and notified everyone, its now just time to wait.

So many questions, to ask but I am very thankful to have found the list of questions out here on the site. To all of you who took the time to answer the OP, I thank you so very much. This has been a very emotionally draining couple of weeks and there are still a few more to go. Often times, there seems to be a strange calmness no person should have before a major surgery and at other times, I become so anxious I can barely breathe and have to start the deep breathing techniques the booklet told me to practice, than again other times when I become so depressed I don’t feel comfortable in my own skin and cant find a comfortable chair to sit in. I have never felt so cared about, yet so alone in all of my life (present company excluded).

I don’t know what I would do if not for being able to spend time out here on the sleepless nights when this gets me up. Thanks again to you all.

 

[Duff Man]

I am rooting for you so hard, man.

 

[buncle]

All your emotions are completely normal.I felt the same way.At times scared and other times almost calm.Keep reminding yourself that this is a lifesaving surgery and there is a light at the other end of the tunnel.Although not pleasant this is a doable thing.Remember we all got through it and are better for it.Take a deep breath and know it will be ok and you will get through it!

 

[Jkm7]

When we say to you the wait is the worst part, for many of us it really is. I had two OHS in four years and still remember the anxiety and fear and disbelief and all the mess of feelings we experience. Only one who has gone where we have been can truly understand. This isn't routine to the patient in the way having appendix out is routine. It is comforting to know it is routine for our surgeons and their teams but for us, it's major.

This site is a blessing for those of us who have to experience this and the caring sharing people here are magnificent. Without people who understand to 'talk with', it would be even harder for those of us who come here seeking information and assurance.

Ask whatever occurs to you. If you are thinking of that question, the chances are good others are as well.

Keep busy. Sounds like you have a good game plan in place.

I agree with Lynlw that you well may not need a downstairs bedroom. Both my surgeries, I went to our bed first night home with lots of pillows and it worked out fine for me. I had to walk a flight of stairs before I was discharged from Mass General and had no problem doing so at home.

 

[ski girl]

Go Jake!

I'm 4 weeks post-op and have been really amazed at how pain-free and easy my surgery was (AVR). I expected much worse. For me what really helped was I taught myself how to get out of bed and in and out of chairs without using my arms, practise that and you will be quite self-sufficient in the hospital which will make you feel better all around.

Pushing and pulling with your arms = ouch!

There will be nothing wrong with your legs so as soon as they get you up and walking, walk. Heaps. Peek into the rooms of others who can't (won't?) do their walking and have a little gloat to yourself about how well you are doing.

And when you get out of hospital, remember that this is the start of a life where you are finally getting all of your blood!! Best of luck from Australia!

-Di

 

[ALCapshaw2]

As you have seen from the above responses, facing Surgery is never easy.

Many of our members report finding a sense of Peace and Comfort
as they reach a state of Acceptance before surgery.

Fortunately, most of us find that our fears were exaggerated
and the reality is easier to cope with than we feared.

Changing topics, Do you have a Recliner?
Many of our members report that sleeping in a recliner for the first few weeks is more comfortable
(and easier to get into and out of) than a flat bed.

Best Wishes,

'AL Capshaw'

 

[Marguerite53]

I don’t know what I would do if not for being able to spend time out here on the sleepless nights when this gets me up. Thanks again to you all.

That is exactly how I felt. Just exactly. Some nights I just couldn't go to sleep. I was terrified that I wouldn't wake up; which was pretty nonsensical since I was being watched by the doctors so closely. So I would come here and calm down; while away some time.

I'm very glad you have found us. We really know how you are feeling. Waiting is often the hardest part. It really sounds like you're getting all your ducks in a row and with good luck and confidence you will discover that this really wasn't half as bad as you expected it to be. But it's okay to feel all that you are feeling. It is normal.

Best wishes and keep us posted.

Marguerite

 

[jake]

Well I learned some new things thanks to the great set of questions I got form this forum as well as the many posts about questions and concerns many have had as well as some anomalies and problems some of you have posted questions about. I would love to share them with you all and get your take on what I heard. I got some pretty standard answers so I will not post those, but I would love to float some of the ones that really intrigued me.

Question: Some heart valve/aortic repair recipients report incidents of changes in taste and smell.

Answer: This is due to anesthetics that used to be used and some hospitals still use. The anesthetics we now use greatly reduce if not eliminate this in most patients. He told me the name of the anesthetics that were / are now used but I did not write their names down.


Question: Will I be able to go back to normal activities (lifting, skating, hockey, etc)

Answer : No! Once healed up, you will remain on a 50 lb weight restriction for the rest of your life. Although the graft will easily withstand the pressure associated with heavy lifting, the sutures that connect the graft to the heart and to the aortic arch are at risk of tearing away from the aortic material. Heavy lifting and contact sports are going to remain a big NO NO.

Question: I have heard of people getting numbness and tingling as well as ocular migraines (visual abnormalities) after heart surgery of this type. What are the chances of this occurring?

Answer: These anomalies are caused by damage to blood cells caused where the graft material is sewn to the aortic material and the valve root. Although this type of anomaly only occurs in about 5% of people who undergo this surgery, we can often eliminate the problem by placing the patient on plavix for the rest of their lives if the problems are bothersome.

Question: will I have to continue to take a baby aspirin a day?

Answer: No, you will have to take a full strength aspirin for the rest of your life.

Question: Is there a chance that pacemaker leads will remain inside my body?

Answer: Absolutely not! We remove them 100% of the time and leave nothing behind except for maybe the part of the leads that connect the leads to the heart. We never leave any part of the leads themselves behind ever.