Family Support/Other Questions

[KayBee718]

I haven't scheduled my surgery yet but I have a couple of questions.

I'm single - no husband or boyfriend - and my family is all on the east coast with the exception of my daughters, who all have work or school commitments and aren't available to babysit mom during the day.

My sister, mom, and best friend are going to come stay with me for a week each.

How long do I need to have someone around 24x7?

Has anyone done the hospital stay without next of kin present all the time? I have a close friend who will be there with me pre surgery but she can't stay full time.

I kind of hate going through this alone.

Have any of you done cardiac rehab and is it helpful?

Anyone with experience at The Heart Hospital at Baylor in Plano, TX?

How long was the wait between the surgeon saying "Yeah you need surgery" & the actual surgical date?

Thanks!

 

[AZ Don]

Although I had the luxury of having help, by the time I came home on day 5, I could do everything that I needed to except drive. By the time cardiac rehab was brought up I had already been exercising as much as allowed, so my Dr's said I was already beyond what they would do in cardiac rehab. (They also said they were used to more elderly patients, I was 51). If it helps to get you out and exercising then I would say cardiac rehab is important.

My wife was able to stay with me through the surgery but she works and we have 3 kids. She came to visit but certainly not full time.

How long was the wait between the surgeon saying "Yeah you need surgery" & the actual surgical date?

For me it was about 1.5 months. It would have been sooner but I was sent for genetic testing to evaluate if they could find a genetic cause for my BAV and aortic aneurysm (they could not). This delayed the process a couple weeks at least.

 

[KayBee718]

Although I had the luxury of having help, by the time I came home on day 5, I could do everything that I needed to except drive. By the time cardiac rehab was brought up I had already been exercising as much as allowed, so my Dr's said I was already beyond what they would do in cardiac rehab. (They also said they were used to more elderly patients, I was 51). If it helps to get you out and exercising then I would say cardiac rehab is important.

My wife was able to stay with me through the surgery but she works and we have 3 kids. She came to visit but certainly not full time.


For me it was about 1.5 months. It would have been sooner but I was sent for genetic testing to evaluate if they could find a genetic cause for my BAV and aortic aneurysm (they could not). This delayed the process a couple weeks at least.

Wow, I'm surprised that they delayed the surgery for the genetic results. I'm going to ask for genetic screening as well since my grandmother, her father, and my uncle have all had aortic aneurysms and all had dissections. My uncle's was abdominal, my grandmother's was thoracic, and not sure about her father.I'd like to get the genetic info for my daughters, grandchildren, and sisters.

So, Don, after your wife went back to work, you were recuperating at home alone? This is one of the questions I have for the surgeon.

I was just Googling him and he's going to a conference in mid May at HUP, so who knows when I'll get on the calendar.

 

[AZ Don]

So, Don, after your wife went back to work, you were recuperating at home alone? This is one of the questions I have for the surgeon.

At first, then school let out and all 3 kids were home. 2 teenagers and a pre-teen. That is worse than being home alone ;-) I helped the kids more than they helped me during this time.

I don't think the surgery was deliberately delayed for genetic testing, just that the surgeon did not view the surgery as urgent. At the time, it was a bombshell that I needed open heart surgery. It was only after that I realized that genetic testing was introducing an unwanted delay.

 

[Paleowoman]

Hi KayBee - I think it's impossible to tell how long you'll need someone around to support you post surgery. Whilst you're in hospital I doubt there's any need for anyone to be actually with you except for moral support of course. When you are in ICU family would probably just get n the way. Nursing staff are there 24/7 in ICU. The same in high dependency which you are moved to next. Once you are on the ward they are still pretty good at nursing and keeping an eye on you - you have to do exercise etc so they make sure you do that.You don't get left alone much ! In fact you may want to be alone to rest ! It's tiring post surgery. But it's once you are home that you will/may need support.

I was extremely fit pre surgery and was asymptomatic but that made no difference to my post surgical recovery - I was in a lot of pain and things didn't go that well. I had my husband, and I could not have done without him. Someone on this forum once wrote that the most important thing once yo get home is to have a "slave" - too true ! I certainly wouldn't have been able to cope with running the house cooking etc ! Just doing my exercise and trying to get rest and sleep through the pain was difficult enough.You may be surprised how exhausting you may feel even brushing your teeth ! I had a chair in the bathroom so I could sit to do that. Not everyone is like that, some people find things easy, some don't and some in-between, and it's not something you can forecast.

I would advise you to make sure you can see your primary care doctor easily post surgery. Things can go wrong and you may need a doctor, eg my sodium levels dropped too low three days post discharge and my GP was able to deal with that by taking me off certain meds. He also put me on other meds to help and so on. I needed to see a doctor in an emergency three weeks post op too.

I started cardiac rehab at around seven weeks post op.

 

[cldlhd]

Wow, I'm surprised that they delayed the surgery for the genetic results. I'm going to ask for genetic screening as well since my grandmother, her father, and my uncle have all had aortic aneurysms and all had dissections. My uncle's was abdominal, my grandmother's was thoracic, and not sure about her father.I'd like to get the genetic info for my daughters, grandchildren, and sisters.

So, Don, after your wife went back to work, you were recuperating at home alone? This is one of the questions I have for the surgeon.

I was just Googling him and he's going to a conference in mid May at HUP, so who knows when I'll get on the calendar.

AZDon if you don't mind me asking what did your genetic testing include. I didn't have blood work taken they basically just measured my skull, length of arms,legs, width of palate etc to rule out Marfans.
Ah HUP is where I had my surgery, they did a great job but to be honest I can't say it was one of my favorite weeks ever.

 

[Garserin]

Hi Kay-Bee, I'd like to answer some of the questions you posed since I was in a very similar situation. I was living alone, one son nearby, but very busy with a job and 3 young children. In the hospital, my son and daughter-in-law stayed with me as much as they could, certainly not 24/7. After 5 days I was discharged and moved to a rehabilitation facility. I had arranged it like that beforehand because I was convinced I would be pretty much an invalid. Happy to say I was wrong about that, I checked myself out after 6 days, I found myself getting bored and just wanted to be home and in my own bed.

I was totally on my own 11 days post surgery and was able to do anything I needed to do to take care of myself from cooking easy meals, doing light house work to walking around outside for exercise. I only needed help with grocery shopping because I didn't drive for 4 weeks post-op.

Time between my first appointment with the surgeon and surgery was 5 weeks.

Cardiac rehab was the best thing I did for myself after surgery. I had never before exercised in any formal way so a little less than 3 weeks post-op I started going to cardiac rehab 3 times a week. Since I couldn't drive yet, I rode a little bus especially for seniors. The 2 months I spent there made me realize I needed to continue with being physically active and I joined the local Y and now I go 3 or 4 times a week for different classes.

I was lucky, I had no complications and recovery went very well. I felt pretty much back to normal after a couple of months. I was 62 at the time of surgery.

 

[AZ Don]

AZDon if you don't mind me asking what did your genetic testing include. I didn't have blood work taken they basically just measured my skull, length of arms,legs, width of palate etc to rule out Marfans.

They used a fluorescent DNA sequence analysis to test for the presence of mutations in the following genes: FBN1, TGFBR2, TGFBR1, and possibly TGF1 and TGF2 - genes known to be associated to BAV. They found no mutations. I went to Mayo Clinic in Phoenix and they sent my bloodwork to Mayo Clinic in Rochester, MN for this test. I think it is something that is not done many places. It was available so I took advantage of that. My niece has a very different issue that is possibly related to a connective tissue disorder, as is BAV, but other than that I had no family history. If my BAV is related to some genetic issue it is thought to be spontaneous (occurring in just me) and it would be in a gene that they don't yet associate to BAV. There is still a lot to be learned about the causes of BAV. There are studies that are looking at the possible causes for BAV and I have participated in at least two studies by sending bloodwork on for analysis.

 

[cldlhd]

Wow, I'm surprised that they delayed the surgery for the genetic results. I'm going to ask for genetic screening as well since my grandmother, her father, and my uncle have all had aortic aneurysms and all had dissections. My uncle's was abdominal, my grandmother's was thoracic, and not sure about her father.I'd like to get the genetic info for my daughters, grandchildren, and sisters.

So, Don, after your wife went back to work, you were recuperating at home alone? This is one of the questions I have for the surgeon.

I was just Googling him and he's going to a conference in mid May at HUP, so who knows when I'll get on the calendar.

I just had my follow up with my surgeon at HUP a couple hours ago and apparently he's going to be discussing my case at that conference so maybe your surgeon will get a peek at my innards , apparently I don't get any compensation though...

 

[KayBee718]

That's funny right there! LOL

 

[MrsBray]

Hi there! I'm with AZ Don on this. When I was discharged after 5 days, I could physically do everything I needed to do, except get up out of bed, and drive. I was just really, really. REALLY slow. Unload the dishwasher - one dish at a time. Move the laundry from the washer to the dryer - one pair of pants at a time. My sister was with me the first week, my mother was with my the second week, and my brother was with me the third week. The first week, I was glad to have someone to talk to. The second week I was glad to have someone to cook good food. the third week was nice to spend with my brother without his kids running around.. the fourth week? ALL ALONE, finally! I still couldn't drive, but I was going for walks and starting to get back in to the housekeeping routines. By 5 weeks I was driving, and 6 weeks in to cardiac rehab.

In the hospital, most of my family sat around and either stared at me or at their phones. My husband came by one evening after work and we ate dinner together, that was nice. My family was never in the way, but I felt weird about dozing off in front of them. What other questions do you have?

 

[KayBee718]

That's about it.

It strikes me as odd, in a good way, that people seem to bounce back from something so major so quickly. I hope that's the case with me.

My appointment with my cardiothoracic surgeon is this Monday and it's been a long three weeks of waiting now that I know my aortic root is at 4.9 cm. It has grown quickly since November and I'm trying to figure out what the surgeon is going to say. Wait another six months or get it done now. I really want to get it fixed sooner (now) rather than later!

I have another thread on the Heart Talk forum, specifically discussing my aneurysm and questions on that.

 

[tom in MO]

I was 55 when I had the surgery and could drive after the first two or three weeks. I was told that driving was restricted not due to the surgery, but due to the pain pills. Once I dropped my dosage and pretty much stopped the narcotics during the day, I started driving. The amount of pain pills you take will vary by your constitution. I started out full strength and started dropping my dosage after about the third day home. You can substitute acetaminophen for the narcotic, which lets you drive.

I got home on about day 7 after surgery. My wife stayed home the first day but after that she and my daughter were gone every day and I was home alone until the evening. The hardest thing was cooking, but you can still do it. Make sure you have easy to prepare food, enough for a week or two. The only thing I could not do was lift anything heavier than a gallon of milk. I needed help with groceries and so will you.

Your wound care, bathing, dressing, etc is totally manageable by yourself.

If you don't exercise or don't like to exercise, take the cardiac rehab class. Like me, you'll be youngest person there, but it helps you focus. If you have good insurance, the cost will be negligible. I hate exercise, but I still do the ones I learned in cardio along with the stretching.

You can do it. Don't worry. : )

 

[epstns]

If you don't exercise or don't like to exercise, take the cardiac rehab class. Like me, you'll be youngest person there, but it helps you focus. If you have good insurance, the cost will be negligible. I hate exercise, but I still do the ones I learned in cardio along with the stretching.
You can do it. Don't worry. : )

Even if you DO like to exercise, take the cardiac rehab class if you can. I was a runner and a gym rat before surgery, but I had complications in my early recovery and was far less confident in my physical ability than I liked. I took the rehab class for 12 weeks. It was a 3-day-a-week class, and I went to my own gym on the other 2 days, doing the same routine that I did at rehab. After the 12 weeks, all of my "progress deficit" had disappeared and I was on my way to a very strong recovery. Fast-forward about 4 years. I'm now 67. I'm in the gym 5 days a week and I feel that I'm in better shape now than I was for a year or two prior to surgery. Rehab gave me the confidence to do so much more than I would have done on my own.

I was not the youngest person in my rehab cohort, but I sort of became the "class clown." I wanted to have fun and enjoy the activity, so I always pushed to try to do a little bit more than my rehab counselor asked of me. In this recovery, attitude is half the battle.

 

[big_L]

The cardiac rehab helped me get over any fear that I was going to hurt myself if I got my heart rate elevated. I didn't go that many times, but it did help.

I wasn't left alone much for about a month, which drove me batty. I was fine by myself after a week. Yes, I was still recovering, but I could cook, bathe, sleep. No driving, the problem is the risk with the airbag or hitting the steering wheel if you crash. I did have some double vision sporadically, so I wouldn't have felt safe driving anyway.

I had friends that said they'd come over and sit with me while my wife went to the grocery store or whatever. You have got to be kidding! I'll sit here by myself and read or listen music. Yes - I promise not to climb a ladder or anything while you're gone!

 

[Odie]

> How long do I need to have someone around 24x7?
While hospitalized I had a lot of confidence in the hospital staff. Even when I was alone (which wasn't often) I knew I wasn't alone. I don't think having family or a friends stay 24x7 at the hospital is necessary for most. Once at home I interpreted any act of self-reliance as an important sign of recovery success. With that said, I was never left alone for more than 8 hours and my wife's assistance during those first few days home was invaluable to me.

Also, my surgeon's instructions were "NO pushing, pulling or lifting objects heavier than 10 pounds". For anyone reading this pre-surgery, spend a day mentally acknowledging anything you do requiring more than 10 lbs of arm strength. You may find this exercise enlightening! Only after surgery did I realize opening my freezer door, and setting my recliner into a sleeping position, required more than 10 lbs of pressure.

>Has anyone done the hospital stay without next of kin present all the time?
Fortunately I married the closest thing on earth to an actual Angel. She put her entire life on hold to stay with me at the hospital. I think the nursing staff appreciated having her in the room to help me because it lessened my reliance on the hospital staff. Our initial plan was for my parents to come by every day to give my wife a break. After two days of 24x7 companionship I was doing everything I could to encourage an Angel and the sweetest parents in the world to leave me alone. If I ever have a re-do I'll plan for having more privacy during recovery.

>Have any of you done cardiac rehab and is it helpful?
I started cardiac rehab as soon as they would take me (around the 3-week mark). I went 3 times a week and repeated the cardiac rehab activities on my own the remaining days. I enjoy pushing myself physically so, for me, the biggest benefit was the ability to exercise while being monitored by experts experienced with OHS physical recovery. I was the youngest and fittest of everyone I met at rehab. There were also people in rehab who had never exercised a day in their adult life, and who attended their first session reluctantly. I witnessed dramatic change especially in those people.

>How long was the wait between the surgeon saying "Yeah you need surgery" & the actual surgical date?
About two months. After one cardiologist recommended surgery I consulted with two others. The opinion was unanimous, though no urgency alarms were expressed. Still, I immediately started shopping for surgeons and hospitals. I made my selection within 30 days and had a surgery date nailed down about 30 days later.