Need to plan surgery soon, have some questions for those who have gone through it...

[malibu82]

Hi all!

I have posted in the last few months but will refresh memories. I have a 4.7cm aneursym on my ascending aortic valve and a bi cuspid aortic valve. I am going to be having an arch and aortic valve replacement. I also have mild/moderate stenosis. I have kind of been in denial about the whole thing, thinking that the day would never come where I have to plan. However today I saw my cardiologist because lately I have been light headed and short of breath with palpitations and he said that I should start planning now. Which is strange because back in December he said we would just check on it every 6 months and to wait as long as possible before having the surgery. Anyhow, Today at my visit he said he wouldn't be opposed to me getting the surgery next month even. So I guess I have to get back to reality now and think about it.

Problem is I have a 16 month old daughter and a 4 month old daughter. So I am trying to plan the best I can for that "perfect" surgery time. I want to be able to have fun with them outside at parks and what not this summer and just do normal things. So I just have a few questions....

1. How long after getting home from the hospital, did you resume your "normal" activities?

For me "normal" would be lifting my 24 1/2lb daughter and 13lb daughter out of the crib, up and down the stairs, in and out of the car, up into high chairs and so on. When can I expect to do this again?

2. Stupid question but did any of you lose weight during recovery time? I am having a hell of a time losing the last 20lbs I need to lose after having my baby. I wanted to lose it before surgery because I know I won't be able to "work out" for awhile. So I was hoping maybe a few lbs of weight loss might come from not eating a lot after surgery! Wishful thinking? I know it sounds trivial.....Sorry.

3. When could you safely drive again?

4. How long did it take for your incision site not to be "sensitive"? I am worried about one of my babies poking me there on accident or something else. I always get kicked while changing diapers....



I'm sure I will think of more questions as the time comes, this is all I can think of for now.....thanks for reading!

 

[Jkm7]

You are definitely going to need help for a while. It isn't realistic to think you can care for two little babies soon after your surgery.
You will not be permitted to lift more than 10 or so pounds (each surgeon varies a little) until your sternum is fully healed. You do NOT want to risk a bad healing so please don't think lifting baby just a little won't make a difference. It can and probably will lead to poor healing.

You don't want to be kicked by tiny feet when changing diapers. That will be very sore. We all heal at different rates but for most, sternum is healed in about 8 weeks.

My first OHS, my doctors did not permit driving for 8+ weeks. My second surgery, I was cleared to drive at about 2 weeks but I was taking no narcotics during the day and I was having a remarkably uneventful recovery. It is more usual for no driving to be permitted for at least 4 weeks. You definitely cannot lift babies into car seats or high chairs until healed.

Fully healed differs for everyone. Some feel great at 8 weeks; some don't start to feel reasonably well for 6 or more months.
Some have uneventful recoveries and others have bumps in the road. There is no predicting other than it seems those who have exercised and taken good care of themselves prior to surgery often have a somewhat easier recovery but that is not always the case.

We have a saying that the worse your valve gets, the faster it gets worse.
That is what happened to me. I was stable and suddenly when no longer stable, my valve started to get really bad very quickly. So, what your cardio said to you is not all the unusual.

It's understandable you'd like to put off the surgery but it doesn't sound likely you can safely do so.
My first surgery, my incision never stopped being 'sensitive'. Whenever there was a change of weather with rain, snow, dampness, my chest ached. I was never again able to sleep on my stomach. When I needed second surgery, I told my surgeon (same as the first surgery) how sore I had remained and he listened carefully to me. He said he would try hard for it to be more comfortable for me second time. I entered Mass General again, same doctors, many same nurses, same surgeon and my surgery went well and I recovered with no bumps and I knew immediately when I woke this surgery had been easier on me. I get a little discomfort now and then (two years later) but it is hugely better this time.

Sorry this is so long but hope it helps.
Best Wishes.
Ask all your questions. There is sure to be someone here who can help.

 

[acr]

Good input from jkm7 there, a couple of thoughts from me....

1. Normal activities, I dunno, all a little hazy for me. Back to work after 3 months, but I'd say I could do pretty much everything at 8 weeks. The big inconvenience is the lifting, as you have no lifting ability until the sternum fuses. They say 6 weeks for it to fuse, and 12 weeks for it to be back to full strength. However even at 12 weeks I don't reckon I was at full strength. I agree with the 10 pound limit for the first 6 weeks.

2. Lose weight, yep. About 14 pounds. Put it all back on though....

3. Driving - six weeks

4. Scar sensitivity - mine still is, and thats a year down the road, and maybe it always will be. I remember being protective of my wired together sternum and you probably will too.

A friend of mine mentioned picking up one of her grandkids at 2 weeks, snapped one of her sternum wires, so beware.....

Good luck!

Ade

 

[Mentu]

Malbu, JKM has given you good advice. I think most of us will agree that there is no single day when one can resume normal routine. Instead, there are lots of points at which normality returns. I found I could fix simple meals as soon as I returned home but that first week or two you need to spend a lot of time resting and you cannot ignore walking. By the third week a lot of stamina begins to return mostly due to the walking which is also necessary to improve lung function and avoid fluid retention. Driving for me was 6 weeks. This week, I am 6 months post surgery and I've been doing pretty much what I want for the past two months.

The warnings about lifting no more than 7-10 lbs for 6-12 weeks has been troublesome for many of us. I have a friend here who decided to ignore the surgeon's warning about lifting during the first three months. As a result, the wires in his chest broke and his sternum pulled apart and has now healed as two pieces which causes him a good deal of discomfort and limits his activity. I've mentioned in other places, the clamps (sternal talons) my surgeon used
http://www.rapidsternalclosure.com/medical/talon.php
My experience is that they leave one a lot more comfortable and less fragile early on but you must still be careful of the lifting restrictions. Not only must the bone mend but so must the musculature. Since this healing is going to effect the way you live the rest of your life, it is important that it be allowed to finish. I am sure that in the next few days you will receive comments from other Mothers who have had to wrestle with this problem.

Weight loss isn't trivial. Since surgery, I have walked more than I have in many years and have found that my weight is slowly declining but it has not been very fast. The good part is that it is possible to be more active without the unpleasant sensations that appeared before surgery.

Your incision should heal over in about three weeks. Sensitivity is another matter. Some people experience numbness around it...I developed hypersensitivity. For three months, even the touch of a cotton tee-shirt felt more like shark's skin at times. Fortunately, this is not experienced by most people. At six months, I mostly feel discomfort when I drive more than 10-15 miles unless I use my little pillow to lift the shoulder strap away from my chest.

Larry

 

[Philip B]

Questions

Questions

1. How long after getting home from the hospital, did you resume your "normal" activities?

I had pretty easy return to normal compared with others and I probably pushed the envelope more than others (I'm not recommending that you push as hard as I did). I was back at work the week after surgery. I did exercise caution with lifting to let my sternum heal.

2. Weight loss?

I probably lost at least 20 pounds even though I really didn't need to.

3. When could you safely drive again?

Like a few others here, I cheated and started driving before I was released to do so. I was back to driving again within a couple of weeks post-op (I'm not recommending that you cheat).

4. How long did it take for your incision site not to be "sensitive"?

It probably took around six weeks before I felt my sterum was solid enough to resume activities that involved low impact and twisting. I think I was hitting golf balls at 5-6 weeks.

Obviously, you'll need some help with your kids while you heal.

-Philip

 

[malibu82]

thank you all for your responses. They are very informative and helpful!!

i am most nervous/upset about the fact that i do have the small children and i will be completely helpless with them for a few months its the hardest part of planning this all...

 

[ALCapshaw2]

Malibu -

There are some even more important Questions you need to ask given that you have a BiCuspid Aortic Valve and Aneurism (presumably of the AORTA and NOT the Aortic Valve). These (sometimes related) conditions can often be a result of a Connective Tissue Disorder (see the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of pertinent information).

You need to know that Surgery of the Aorta (to repair your aneurism) is complex surgery above and beyond 'mere Valve Replacement' and it is wise to find a Surgeon with LOTS of Experience dealing with those issues. It is expecially important that your surgeon be able to assess the condition of your tissues and KNOW how to deal with Connective Tissue Disorders if they are present. Such Surgeons are typically found at the Major Heart Centers (and typically Not Found at regional or local Hospitals that perform mostly ByPass Surgery and ocassional Valve Jobs). The Cleveland Clinic is the #1 rated Heart Hospital. I'm thinking that Dr. Svensson is the Head of the Aorta Surgery Dept there. Dr. McCarthy was "stolen" from CC by Northwestern University near Chicago and is possibly the leading Aorta Surgeon in IL. There may be others I'm not aware of.

That said, you need to ask the Surgeon(s) you interview about how much experience they have dealing with YOUR issues and what are their Success Rates (typically expressed in the reverse mode as Mortality and Morbidity).

'AL C'

 

[colsha]

Yep, as everyone has said, recovery takes place a different rates. I am 5 weeks post op (BAV and Aneurysm Repair) and feel OK. \
My right hand which has some numbness on my fourth and little fingers. I also have no strength in this hand - and you'd be surprised how frustrating this is. My chest feels OK although the very top of the incision is tender to the touch - and the seatbelt rubs a little. I also still have sore neck muscles - gradually getting better.

I think you need to take heed of your doctors/surgeons advice - as well as those who've posted before me.

You also need to listen to your body and rest when you're tired - which will be often when you're recovering. Do a little, rest a little.

Get help to assist you with the children - best for you and best for them.

Probably be able to pick little one up after 6-7 weeks, but the older child may have to wait for a few months.

I just referred to a publication from the Occupational Health Department of the hospital I attended (RPAH (Royal Prince Alfred Hospital) in Camperdown (Sydney Australia). AND it states you should wait for 12 weeks before lifting carrying children (including babies).

It also says to "remind yourself that getting well again both physically and emotionally takes time and it is a process rather than something that happens instantly."

Keep smiling anyway - I'm sure you'll end up feeling so much better after everything has healed.

Cheers
Col

 

[DavesMom]

I'm so very sorry to hear about your situation and will definitely be sending out positive vibes and prayers for you.

My recovery went smoothly. I'm a teacher and planned my surgery towards the end of the school year so had quite a few months to recuperate. I wasn't able to drive for five or six weeks. I don't recall lifting much but had a very painful incident when I was asleep on the couch and my 16-pound cat decided to take a flying leap onto my chest! OUCH!

All I remember weight wise is being absolutely horrified when I first saw myself following the surgery. They had pumped me full of fluids and I was all puffy and bloated. I had gained a lot of weight but the Lasix they gave me got the fluids out and I was soon back to normal. I didn't have much of an appetite for quite a while so that may also help with the weight situation.

As others have said, you will need lots of help with your kids. Unfortunately, they are not at an age where they're able to understand what's going on.

I wish you all the best. Please keep us posted.

Cheers,
Michelle

 

[Dale 1]

Hi malibu,

I think there's a lot of good information here, but I wanted to add my two cents. The Cleveland Clinic is great, but so is MGH (I'm from Mass.). You'll be very well looked after there, and they have fabulous surgeons there too. I hope that your mother or mother-in-law, or someone else, can come and stay with you to help with the children. You won't be able to lift them comfortably (or safely) for some time. You may want to start planning now. Many people, both family and friends, offered to come and stay with us when I was recuperating. I hope you have people in your life who will do the same for you. I lost about 8 pounds during the immediate post-op period, but, unfortunately, have put much of it back on. But the larger point, I think, is that if you need to have surgery before you lose the rest of the weight, well, then you need to have it. I'm now five months out from my surgery, and feeling well, but I wouldn't say I'm entirely back to normal yet. I need about ten hours of sleep every night (which I have a very hard time getting), and I still wouldn't do any pushups, but I feel pretty good.

 

[malibu82]

wow thanks for all responses again!

AlCapshaw,

I was worried about this too. I asked my cardiologist if I could be tested for a connective tissue disorder and he said that it was strictly congenital and that I don't need to be tested for it. I am having the surgery at Northwestern Memorial in Chicago. My cardiologist told me to see Dr. McCarthy, but when I called there for a consult, the receptionist put me with Dr. Chris Malaisrie. I asked why and they said that my specific problem is his specialty. So I went ahead and went to the consult with him. That was Jan.7th. I asked my cardiologist if he thought I should still request Dr. McCarthy instead, and he said that he recommends both however if I had a mitral valve problem he would for sure have me use McCarthy. So I am at a toss up on this issue of who to use.

Colsha,

12 Weeks!!! I feel so bad putting my family in a position where they have to take shifts to help out. But this can't be avoided, and I can't wait until my children can do things on there own....so I have no choice
Thanks for the info on your experience too!

DavesMom,
Greattttt I have two cats that are always trying to jump up on me when I am sleeping....I never even thought of that happening! I cringed when I read about your 16lb'r!!

 

[witzkeyman]

as far as taking care of your babies, you may have to have someone watch your babies. you will be out of commission for 2 months as far as lifting. I wouldn't take any chances. all I can say is I felt a lot better after my surgery than before.

 

[RANDYJEAN]

All I can recommend is LET PEOPLE HELP YOU! I'm sure that, being the mom, you're used to taking care of everyone else, but this is definitely the time to reverse that. I've always had a hard time asking people for favors and/or accepting their help, so when I had my surgery, it was a whole new experience. It turns out that people who love you do INDEED get a kick out of helping you!

Best of luck...

~Randy

 

[TXWildflower]

12 Weeks!!! I feel so bad putting my family in a position where they have to take shifts to help out. But this can't be avoided, and I can't wait until my children can do things on there own....so I have no choice
Thanks for the info on your experience too!

DavesMom,
Greattttt I have two cats that are always trying to jump up on me when I am sleeping....I never even thought of that happening! I cringed when I read about your 16lb'r!!

Don't feel bad about letting your family help you or feel that you are putting them out in some way. That is what family does for each other and I expect if you think about it you can think of times that you have cared for them, or you will most likely have the opportunity to pay it back sometime in the future when you are all healed and they need your help. Thank God for families and loving, caring friends. I know they will be glad to do it. They love you!

Best of luck to you!!

 

[Bill B]

1. How long after getting home from the hospital, did you resume your "normal" activities?

--- Depends on normal, but I felt almost back to normal, that means having ALL of my energy and endurance back, at about 3 months. Prior to that I had good days and some bad days where I felt tired and listless. Now, I was able to get around well and walk for miles in 2 weeks, but it really took 3 months before I was satisfied. Others take even longer.

For me "normal" would be lifting my 24 1/2lb daughter and 13lb daughter out of the crib, up and down the stairs, in and out of the car, up into high chairs and so on. When can I expect to do this again?

--- OK, as others have commented, there is a weight lifting restriction. Mine was 10 lbs for 6 weeks, then 20 lbs for a few months more. So, technically lifting your heavier daughter will be an issue for several months or so.

2. Stupid question but did any of you lose weight during recovery time? I am having a hell of a time losing the last 20lbs I need to lose after having my baby. I wanted to lose it before surgery because I know I won't be able to "work out" for awhile. So I was hoping maybe a few lbs of weight loss might come from not eating a lot after surgery! Wishful thinking? I know it sounds trivial.....Sorry.

---Nope. I haven't lost any weight. Immediately post-op there is some weight gain from fluid shifts while on the bypass machine. That clears in a few days in most cases. I immediately resumed eating like I always did and although I have been exercising more in cardiac rehab, weight has not gone down.

3. When could you safely drive again?

--- The 6 week "rule" is arbitrary. I was counseled 6 weeks, 4 weeks, whatever depending on who was talking. I drove at 2 weeks. Well, that's pushing it, but 4 is pretty reasonable if you are comfortable.

4. How long did it take for your incision site not to be "sensitive"? I am worried about one of my babies poking me there on accident or something else. I always get kicked while changing diapers....

---Mine healed very quickly. I never had any pain or tenderness. That is probably not typical.

 

[Marfaned]

Variations are inevitable but do take the lifting thing very seriously; it is a very major surgery, probably among the top three or four in your body. In my case, the Marfan problem made things very difficult and weakness persists to this day, but I also had multiple interventions. I lost so much bone mass (the last clip broke despite care) and body weight (112 lbs for a man) that I was advised to go on a high calorie diet! Not surprisingly, it was just as hard gaining weight. Also (the doc may have mentioned this) make sure that there is enough blood available for transfusion if you have a rare blood type like O negative. Major centers are usually well equipped. I needed six units first time and another four the second, despite blood conservation techniques. A third sternotomy is round the corner now.

 

[Guest]

wow thanks for all responses again!

I asked my cardiologist if I could be tested for a connective tissue disorder and he said that it was strictly congenital and that I don't need to be tested for it. I am having the surgery at Northwestern Memorial in Chicago.

Excellent!

While all 3 of my open heart surgeries have been at Children's Memorial, my cardiologist is at Northwestern!

GOOD LUCK!



Cort | 36swm.IL | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker * 07/24/2010 = Chitown #3 *
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"If I only knew then what I know now" ... Lee Greenwood ... 'Fool's Gold'

 

[MarkU]

Hi all!


1. How long after getting home from the hospital, did you resume your "normal" activities?

I spent three weeks at home and the then went back to work for half-days for a couple of weeks. I walked every day after I got home and went back to the gym after about twleve weeks doing very light stuff - stationary bike, treadmill, etc. Even though I was 'functional' after about four weeks, I had lingering effects for about nine months.

For me "normal" would be lifting my 24 1/2lb daughter and 13lb daughter out of the crib, up and down the stairs, in and out of the car, up into high chairs and so on. When can I expect to do this again?

Prior to my surgery I was a weightlifter/ bodybuilder and could bench press over three hundred pounds. Post-op I was banned from lifting anything heavier than a gallon of milk (about seven pounds) for the first month. That was good advice; I tried to push the envelope a few times and paid the price. Be patient, it's going to take a while for everything to heal.

2. Stupid question but did any of you lose weight during recovery time? I am having a hell of a time losing the last 20lbs I need to lose after having my baby. I wanted to lose it before surgery because I know I won't be able to "work out" for awhile. So I was hoping maybe a few lbs of weight loss might come from not eating a lot after surgery! Wishful thinking? I know it sounds trivial.....Sorry.

I lost about 15 pounds, but gained most of it back within a year.

3. When could you safely drive again?

My surgeon released me to drive after only two weeks, which in hindsight was probably too soon. I had a C4 Corvette at the time with a manual 6 speed. I could get in the car ok, but it hurt like h*** to shift gears and it was almost impossible to get out unassisted. My wife took away my keys and made me drive her SUV if I insisted on driving.

4. How long did it take for your incision site not to be "sensitive"? I am worried about one of my babies poking me there on accident or something else. I always get kicked while changing diapers....

My actual incision took about a month or so to heal, but my sternum was sensitive for a long time, six to nine months.

Good luck,
Mark

 

[COLLEEN S]

1. Does she kick? Alot? No, then 6-8wks. Yes, then12 wks.
2. Yes lost 25 lbs before I left the hospital, it was all water. Do not deprive your body of protein after surgery. It is very necc. for tissue to heal.
3. 4 wks for me I think
4. Be xtra careful. They have protectors out there for incisions. I have seen them made of metal. Mine wasnt really sensitive, so I can't really comment on that.