Aneurysm repair and AV replacement recovery question

[ArizonaRunner]

Hi to all.. I'm new here, and was recently diagnosed with an ascending aortic aneurysm, to go along with my bicuspid aortic valve which was diagnosed about 20 years ago. I'd really appreciate it if any of you who've had this type of surgery (aneurysm repair and aortic valve replacement) could give me some advice on the initial recovery period, for the reason given below...

I live in the west now, and am in otherwise good health and in my early 50's. However, all of my family and friends are back east, so I need to have someone travel from the east to be with me immediately after the surgery, so that someone will be with me during the initial recovery period. (My surgeon says I should have someone with me for the first week or two...) My question to you is, is that enough time, or should I make plans to have someone with me for a longer period than about 2 weeks? I'm assuming no major complications when I estimate 2 weeks, and I can have people here longer than 2 weeks if absolutely necessary or if there are complications, but the longer they have to stay, the greater hardship it will be for them... So, do you think about 2 weeks after the surgery (or after hospital discharge) is a long enough time to have them stay? I'm used to being independent and want to do as much on my own as possible, but I don't know exactly what to expect. Any advice would really be appreciated, because I have to make accomodations for people.

(I initially tried to have surgery back east in Baltimore where family is, and was advised by the surgeon's office there to send my records to them in March which I did, but the surgeon is highly skilled and quite busy and still hasn't had time to review my records after 9 weeks, and they had to cancel several potential surgery dates they were holding for me for that reason.. So after 2 months of waiting and postponements, I decided to have the the surgery here and just bring family or friends here from back east...)

 

[kfay]

At 45, two weeks would have been plenty of time for me needing help EXCEPT for the following two things: you most likely won't be cleared to drive until anywhere from 3-6 weeks (I'd go ahead and ask your surgeon, just so you'll have a better idea for planning purposes), and, you won't be allowed to pick up anything heavier than 5 pounds for 6 weeks if I remember correctly. My surgeon's staff gave me the reference of a gallon of milk, which weighs around 7 pounds. So, if you have someone locally who will drive you to the grocery, and to the Dr. and who would be willing to say help with laundry and bringing in the groceries, you should be fine. The only other thing to keep in mind is this, not all complications from this surgery happen immediately. You can develop fluid issues and other problems many weeks out. Just so you are aware of that and have a back up plan, just in case. I was fine showering by myself and puttering around the house all day alone. I sent my husband back to work after that first week at home.


Kim

 

[Jkm7]

Both my surgeries, I would have been fine to be on my own after the first week or so. We made arrangements for someone to be with me during the days when DH had to be in his office and after the first few days, I really didn't need them here. My DH was home for dinner and all night but I could have managed on my own.

As Kim mentioned above, the things most of us need help with are rides for doctor appointments and help carrying anything that weighs more than we are permitted to lift. DO NOT think it will be okay to 'cheat a little'. If your sternum does not heal well because of premature lifting, it will not be a good situation for you. You could suffer for that for a very, very long time.

I was able to shower on my own, fix easy meals, set table and wash dishes. I didn't do any heavy pot scrubbing for weeks.
Do not vacuum or sweep or reach high above your head.
If things you need are placed at counter level for you to reach, you most likely will not need help for more than a week or two.

What you will learn here is we are all different. We all experience OHS differently and those of us who have had more than one find that each of our surgeries were different though, in my case, I was at the same hospital (Mass General), same surgeon, same CICU and step down and many of the same nurses and staff. I recovered faster and easier from my second surgery than from my first, four years prior.

Best wishes.

 

[Dale 1]

I had replacement surgery (both BAV and ascending aorta) in November. I definitely needed someone to be around for at least four weeks, if for no other reason than to open jars! I didn't drive for about six weeks. Once you start driving, you need to be very careful, because your reaction time may be a bit slow. Don't worry, it will work itself out as you recover. I think only having someone with you for two weeks is really pushing it. Have you considered a rehab for the time after you're released from the hospital? Then your family and/or friends could come help you out once you're home. You'll be better company then, too!

 

[nngbwh]

It really depends on your body. Anyone is different. For me, I definitely needed someone to be around for a months or longer.

Having a extra set of hands does make a big differences.

PS: Forgot to say welcome aboard.

 

[tbays03]

I had ascending aortic aneurysm repair and Ross procedure and I sent my husband back to work after 2 weeks. Of course, I still had to have someone to do some of the heavy housecleaning, lifting and driving me to my dr appt(s). My surgery was 13 years ago and I am now requiring a replacement aortic valve which will be mechanical.

Best wishes and I hope you have a speedy recovery!

 

[ALCapshaw2]

Welcome Runner -

First Things First:

If I had BAV and An Ascending Aortic Aneurism, I would want to be SURE the Surgeon I selected has considerable Experience doing AVR on BAV patients AND doing Surgery of the Aorta which is a Big Step Above 'mere Valve Replacement'. You need to know that Connective Tissue Disorder(s) are often associated with BAV and can be the cause of your Aneurism. IF you have a CTD, you will also want to be sure that your Surgeon KNOWS how to deal with it and how to sew in valves so that the stitching will NOT come loose (which has happened to some of our members who used less experienced surgeons for their First Surgeries and had to have a second surgery with a more experienced surgeon to save their lives.)

I'm wondering which Surgeon you were considering in Baltimore. Dr. Duke Cameron is a well known Heart and Aorta Surgeon at Johns Hopkins which is one of the Top Heart Hospitals in the country. Many of our members have had excellent results with him. You can find posts containing references to him by doing a Search for keywork "Cameron" and scrolling down the search box to select "Any Date" from the drop down menu.

'AL Capshaw'

 

[mainframe]

I think you'd be feeling o.k. after a couple of weeks, but careful with the lifting. My first surgery I felt pretty good and even went to work after a couple of weeks.

You might consider having a plan B in case of complications. For my second surgery, I flew to SFO to have my surgery and thought I'd be there a month which would have included a week or so out of the hospital. I ended up being there for almost 3 months. While thats not typical, you never know.

 

[Bill B]

I had what you are going to have done at age 61 and was discharged home after 7 days. Other than not being allowed to drive (actually I broke that rule at 2 weeks post-op), I can't see any reason you would need somebody around, but maybe that's just me. You should be fully ambulatory and able to do anything but lift more than 10 pounds when you are discharged.

 

[tprice54]

Welcome aboard! As everyone else has stated, you'll feel better after 2-3 weeks, but it is the driving and lifting...you may not need someone 100% of the time, but you will need occasional help. Oh, and I love your name on here....we have another Arizona runner here, Kodi!

 

[Maryka]

Two thoughts: The National Marfan Foundaton convention is always this time of year, so Duke Cameron and other big-name heart surgeons may be going there. (This year the meetings are in Hawaii...that should inspirte a lot of talent to attend!)

You can always call one of those nursing services to send you help (for $$$, of course) if your find yourself in great need. My stepmother (once a rich woman) was always calling nursing services to help her in unforseen times of need. Nurses can even drive you to appointments, I believe. She even got some nurses to come to her hotel room when she found herself in need while on vacation.

 

[Gail in Ca]

My inlaws, my 92 yr old Mom, all wanted to be at home to help me after surgery. I also am kind of a person who doesn't mind being by myself. So, my inlaws came overnight and drove me to my after surgery cardio appt. I found out my father in law isn't driving very safe anymore and I was in the back seat, and was never so glad to get home. Then, after they left, my Mom came over, and was wanting to use the bathroom at 2am the same time as my naked hubby! She only stayed 2 days per my request. Then it was just me for the rest of the first week. My husband came home after work and we either did a simple meal(bbq worked well) or take out.
This was my 3rd surgery, I felt good, and really just needed help picking up heavy things, driving. I just didn't pick up heavy things when I was alone. Laundry you can do, just not heavy lifting. No cleaning. But all this can be left until you recover and can get back to regular activities.
But, if I had been totally alone all day and night, I think it would've been different. You don't really need anyone with you much, but when you do need help, you need it! Have everything at reachable levels. I tried to drive at 5 weeks and it didn't feel very good. So I waited another week and it was better.

 

[COLLEEN S]

Never pass up a world reknowned doc just cause he's busy. That means he is G-O-O-D! I had Dr. Duke Cameron from Johns Hopkins and would recommend him to anyone in a heart beat (pun intended.) I have a similar background to yours, if you want to read my profile.

 

[ArizonaRunner]

Welcome Runner -

First Things First:

If I had BAV and An Ascending Aortic Aneurism, I would want to be SURE the Surgeon I selected has considerable Experience doing AVR on BAV patients AND doing Surgery of the Aorta which is a Big Step Above 'mere Valve Replacement'. You need to know that Connective Tissue Disorder(s) are often associated with BAV and can be the cause of your Aneurism. IF you have a CTD, you will also want to be sure that your Surgeon KNOWS how to deal with it and how to sew in valves so that the stitching will NOT come loose (which has happened to some of our members who used less experienced surgeons for their First Surgeries and had to have a second surgery with a more experienced surgeon to save their lives.)

I'm wondering which Surgeon you were considering in Baltimore. Dr. Duke Cameron is a well known Heart and Aorta Surgeon at Johns Hopkins which is one of the Top Heart Hospitals in the country. Many of our members have had excellent results with him. You can find posts containing references to him by doing a Search for keywork "Cameron" and scrolling down the search box to select "Any Date" from the drop down menu.

'AL Capshaw'

First of all, thanks to you and to everyone else who replied, and thanks for the valuable advice..

As far as Baltimore goes, I did my research when I was first diagnosed in February, and decided that Hopkins and Dr. Cameron would be an excellent choice if I were lucky enough to be able to get in to see him... We called the cardiac center at Hopkins and were told that they'd reserve a surgery date for me with Dr. Cameron in early April (or early May if I preferred), and that I should send all of my medical records and diagnostic recordings. I did that in March, but Dr. Cameron couldn't review my records before the May date so they called and cancelled. As far as I know, he still hasn't had a chance to review them, so if I call I'm told by his assistant to keep waiting and that he'll call me when he can get to it. He's been on frequent trips since I sent my records, including several trips out of the country, so I understand that he's quite busy and in demand because he's one of the top experts in the field.

I'm just guessing, but another possible reason for the delay might be that the size of my aneurysm is borderline for requiring surgery, even with a bicuspid AV, but the reason the doctors here are recommending surgery now is because they don't consider me asymptomatic... (I still have a frequent feeling of localized pressure in my chest just to the left of my breastbone, and an occasional mild throbbing ache in the same area during periods of moderate physical exertion or psychological stress (and all other tests on my heart are normal), so they attribute those symptoms to my aneurysm...)

Anyway, obviously patients with larger aneurysms or with ruptures, dissections, etc., or with valves that leak more than mine does, should take priority, but it would have really helped me out to know back in February that it could be several months or longer before the doctor could review my records for the first time... The reason the delays have been more of an issue for me than for most is because my time limit for unpaid medical leave is running out since I thought I was having surgery in April or early May, so the waiting and postponements have caused some other problems too, and there's now a chance I could lose all my company benefits, including health, life insurance, and disability... I guess I got a little carried away and typed a dissertation... Sorry. And again, I really appreciated the advice.

 

[Lynlw]

First of all, thanks to you and to everyone else who replied, and thanks for the valuable advice..

As far as Baltimore goes, I did my research when I was first diagnosed in February, and decided that Hopkins and Dr. Cameron would be an excellent choice if I were lucky enough to be able to get in to see him... We called the cardiac center at Hopkins and were told that they'd reserve a surgery date for me with Dr. Cameron in early April (or early May if I preferred), and that I should send all of my medical records and diagnostic recordings. I did that in March, but Dr. Cameron couldn't review my records before the May date so they called and cancelled. As far as I know, he still hasn't had a chance to review them, so if I call I'm told by his assistant to keep waiting and that he'll call me when he can get to it. He's been on frequent trips since I sent my records, including several trips out of the country, so I understand that he's quite busy and in demand because he's one of the top experts in the field.

I'm just guessing, but another possible reason for the delay might be that the size of my aneurysm is borderline for requiring surgery, even with a bicuspid AV, but the reason the doctors here are recommending surgery now is because they don't consider me asymptomatic... (I still have a frequent feeling of localized pressure in my chest just to the left of my breastbone, and an occasional mild throbbing ache in the same area during periods of moderate physical exertion or psychological stress (and all other tests on my heart are normal), so they attribute those symptoms to my aneurysm...)

Anyway, obviously patients with larger aneurysms or with ruptures, dissections, etc., or with valves that leak more than mine does, should take priority, but it would have really helped me out to know back in February that it could be several months or longer before the doctor could review my records for the first time... The reason the delays have been more of an issue for me than for most is because my time limit for unpaid medical leave is running out since I thought I was having surgery in April or early May, so the waiting and postponements have caused some other problems too, and there's now a chance I could lose all my company benefits, including health, life insurance, and disability... I guess I got a little carried away and typed a dissertation... Sorry. And again, I really appreciated the advice.

I am sorry thing got so complicated. I know how it can take a really long time and wait if you want the BEST, and how frustrating it can be waiting if you aren't an ER. We've run into that a couple times, we were waiting for his case to be discussed at the weekly round table meeting, where all the heart docs discuss, difficult cases, and come up with thoughts/plans but since Justin was doing well and at home, he kept getting bumped for kids who were inpatients. But really they should have told you it may take a while.
Did you tell them you were not going to have your surgery there? or are you still on his list of records to review? How much notice did they give you to postpone your surgeries? Since you had to travel and make arrangements, I hope they didn't wait until the last day or so.
Am I reading right you've been off work since you were going to have the surgery in May? IF so Is it possible to go back to work until you definately are having surgery IF you decide to wait for Cameron? So you won't lose your benifits, time off? or were you told no work until you have the surgery, which I know happens sometimes.
Have you explained all of this to Camerons staff and that if they can't get you in soon, you may lose all your benefits ect, since you've been off work (If you are off work and I read that right) I know that sometime for things like that they might be ale to get things going. Before one of my sons surgeires, we were using Cobra insurance and I told his cardiologist and surgeon, we needed the cath and surgery ASAP, because we were paying 1300 a month for cobra and i honestly didn't know how long we would be able to afford to keep it, so please get him in quickly while he has insurance. My husband ended up getting a new job quickly, but they did try to work with us with getting everything done.