Open heart surgery in January 2021

[mgary622]

I am 23 and I will be having open heart surgery to replace my aortic valve and mitral valve in January of 2021. I'll be all alone in the hospital in Minnesota because of the pandemic. Unfortunately due to the pandemic and the distance required, I will not be able to meet the team who will be performing the surgery until the surgery itself is two days away. I'll also be trying to finish up my last semester of grad school and honestly I'm freaking out. I'll be doing so much of this on my own and the cardiac team really hasn't provided me with a whole lot of specific information. For example, I don't even know what kind of valve they'll be using. In addition, i'll spend the weeks before cardiac rehab staying with my parents instead of in my own home and i'm truly not looking forward to that.
If anyone has any advice or words of encouragement, they would be greatly appreciated.

 

[Superman]

Wow. That’s a lot to take on solo. The good news is that it’s been done, and you will come through also. That said, be your own best advocate. You need to know what valve they are using. I hope you at least know tissue or mechanical. That’s a pretty big deal for knowing how to manage after surgery.

If you can live at home with your folks for recovery and for time leading up, all the better. You’ll want a comfortable place to sit and an easy chair to get in and out of for a bit. Maybe even a giant recliner to sleep in.

I was 17 for my first and a senior in high school. 36 for my second with four young kids including an infant at home. I’m 48 now with five great kids, and amazing wife. Not to brag. Just to say life will indeed go on, so don’t let this bump in the road derail your grad school work!

If you have any specific questions or concerns about recovery or rehab or anything really. Life after surgery. Don’t be shy. Lots of experience on this forum.

Welcome. I just found this place prior to my second surgery. Didn’t have anything like it in 1990. Kids didn’t have (in my little world) this so there wasn’t anyone to relate to.

 

[cp172]

Hi Mgary622,

I suggest you schedule a video conference with your surgeon. I was given a chose between an in person meeting or video and wanted the video to avoid any Covid issues. It worked out well. Stay in touch. Lots of folks on this board have gone through what you are about to go through. When I had my mitral repair they gave me a shot to relax me and then instantly I was woke up.Surgery for the patient is a breeze. You even get medication that gives you a touch of amnesia so you will not remember a lot of what happens after surgery.

 

[pellicle]

Hi

I understand how you feel.

I am 23 and I will be having open heart surgery to replace my aortic valve and mitral valve in January of 2021.

when I had my 2nd OHS in Dec 1992 I was also in the middle of my (second) degree. I was at that time 28.

However I didn't live alone and had a flatemate, who was also a student.

There was no Uber then and taxi to hospital and back was "out of the question" level of expensive for a student. However I was able to get some help from some friends.

My advice is to just take everything slowly, prepare some stuff in advance (food) and definitely do follow the guides on lifting and exersize.

I don't recall that 8 week period but I was back in class in Feb (Australia has summer when you have winter).

Summer was 5hlt for recovery.

I'm sure you'll make it through and soon enough it'll all be in the rear vision mirror, and my advice on that is this

 

[dornole]

It seems like 100% of grad students are in a default state of freaking out, without heart surgery. You have my sympathy! Lots to handle.

I think it would be completely legit to send a medical message or voice message to your surgeon now to ask about the valve selection, and ask if you should schedule a telehealth consult to discuss. Are you talking you don’t know the brand of valve, or the type? At the least you should know and agree to mechanical vs tissue and understand the trade offs for your particular situation including dual valve, young age, and gender (there are considerations for pregnancy if that may apply to you). You shouldn’t be wondering about this without medical advice.

I’m in the Twin Cities so if I can offer tangible support let me know. I had a mitral valve repair for stenosis at Abbott in 2002. So far so good.

 

[greeny47]

I am 23 and I will be having open heart surgery to replace my aortic valve and mitral valve in January of 2021. I'll be all alone in the hospital in Minnesota because of the pandemic. Unfortunately due to the pandemic and the distance required, I will not be able to meet the team who will be performing the surgery until the surgery itself is two days away. I'll also be trying to finish up my last semester of grad school and honestly I'm freaking out. I'll be doing so much of this on my own and the cardiac team really hasn't provided me with a whole lot of specific information. For example, I don't even know what kind of valve they'll be using. In addition, i'll spend the weeks before cardiac rehab staying with my parents instead of in my own home and i'm truly not looking forward to that.
If anyone has any advice or words of encouragement, they would be greatly appreciated.

Hi. I just had my 2nd OHS In October. You will need some help after surgery so it is a good idea to stay with your parents. My sisters came and each stayed a few weeks to help me. You will be surprised how fast you improve/ especially because you are so young. You won’t have much of an appetite but need the protein to heal. That is where having someone cook for you and encouraging you to eat helps. Good luck!

 

[tom in MO]

You talk about meeting with a cardiac team. With me I met with the surgeon and their office nurse practitioner at the same time. I'd focus on an appointment with the surgeon to ask all your questions. They will have their team schedule necessary additional appointments.

Post-surgery, plan on being out of the picture for grad school work for at least 3 weeks but probably no longer than 6 weeks.

It's all about attitude. Your parents can be a pia at 23, but this is a time to accept their help and "let it go in one ear and out the other." If you pray, that can help with anxiety. Getting out of the house and walking is good therapy both before and after surgery.

Rest easy with the thought that you are not the first down this road and it's been successfully traveled by many.

 

[mgary622]

Thank you all so much for your words of support! For clarification, I don't know any specifics about the valve- tissue vs mechanical at all and I live currently with a roommate, so my hope is that I'll be able to go back to my home the first week in march, which is theoretically when I would start cardiac rehab(my cardiologist's nurse practitioner) has recommended starting and completing rehab in the same location. I also have a job (in a church) that truly needs my help as I am the youngest person who is not a toddler who attends/works at the church. They are, of course, very understanding that I will have limitations but here we are

My roommate has agreed to help me with everything I need once returning and assuming everything goes according to plan, i'll be attending classes online again starting the second week of February.
Luckily I have been able to obtain more accommodations at the grad school that will make keeping up with classes do-able even while I am recovering.

I'm definitely feeling frustrated by the lack of contact and information from the surgical team because it is me who will primarily be affected by their choices. Basically, I will get a covid test, an echo, and a TEE on the 19th of January, meet with the whole team who will be performing the surgery on the 20th, and then surgery on the 22nd. With only two days between the consult and actual surgery, I'm hoping things will go according to plan.

 

[Zoltania]

If you're the kind of person who likes having a lot of information ahead of time, there are some great pinned threads in the pre-surgery and post-surgery forums:

Pre-surgery list of questions
What to take to the hospital
What surprised you about surgery

Of course everyone's experience is different. Surgery is a big deal, there's no denying that, but it is manageable and the challenging part is only temporary.

Keep us posted on what you find out and how you are doing... you have found a helpful community here.

 

[DachsieMom]

This site is outstanding if you have questions.
Staying with your parents would be helpful. I was a little surprised at how difficult some basic tasks like wiping the counter or unlocking my front door were when I first arrived home (in fact, I couldn’t unlock the door). I couldn’t even open the refrigerator or dishwasher. You can sleep on a couch so you can “roll off” when you need to get up. I found it much easier than my bed for the first few weeks.
As others have said, once you hit 3 weeks out or so, you will be surprised at how much you improve. Cardiac rehab is also a huge help, assuming you have nurses that let you challenge yourself. I started at 5 or 6 weeks out, I think. I was 41.
Buy paper plates and plastic utensils for when you get home to your roommate. You won’t want to do dishes and it will be easier on your roommate as well (if you are concerned about the environmental impact, they have recycled versions, and it’s just temporary).

 

[Chuck C]

I am 23 and I will be having open heart surgery to replace my aortic valve and mitral valve in January of 2021. I'll be all alone in the hospital in Minnesota because of the pandemic. Unfortunately due to the pandemic and the distance required, I will not be able to meet the team who will be performing the surgery until the surgery itself is two days away. I'll also be trying to finish up my last semester of grad school and honestly I'm freaking out. I'll be doing so much of this on my own and the cardiac team really hasn't provided me with a whole lot of specific information. For example, I don't even know what kind of valve they'll be using. In addition, i'll spend the weeks before cardiac rehab staying with my parents instead of in my own home and i'm truly not looking forward to that.
If anyone has any advice or words of encouragement, they would be greatly appreciated.

Hi Mgary,
Valve replacement is a common surgery and the survival is outstanding. You will come out just fine on the other side and be back to your normal schedule.
As others have indicated you really should be a part of the discussion about what type of valve you will receive. There are choices to be made, most notably mechanical vs biological. You should spend at least a couple of hours educating yourself and then ask to have a video consultation with the team. This is more than a reasonable request and I can't imagine any reputable clinic not providing this for you. Here is a video by Dr. Alfredo Trento discussing some of the pros and cons of mechanical vs biological valves:
Most likely at your age they will want to go with a mechanical valve, as they theoretically should last the rest of your life. But, the mechanical valve requires that you take blood thinner the rest of your life, and this will place some limitations on what type of physical activities you can participate in- this may or may not be a factor depending on your lifestyle. The biological valve will not require a lifetime of blood thinner, and should allow for very few restrictions on physical activity, but they typically only last 10 to 20 years and would need replacement in the future. You should research your options and go into the consultation as informed as possible and remember that this is your decision as to the type of valve. This is your life and you are your best medical advocate.
Best of luck and please keep us posted.

 

[BasinBoy25]

Good Evening MGary--

I wanted to offer support and reassurance. Days after hitting the big 50, I had my aortic valve and ascending aorta replaced in January 2020 and can completely relate to the freaking out. I don't think anyone who is ever confronted with open heart surgery (regardless of age or circumstances) doesn't freak out. So don't let the freaking out freak you out Unfortunately, the shock and following anxiety is normal--but it still sucks!

Please let me reassure you, OHS is NOT the end of the world. As many have testified to on this site, you will make it through and come out stronger on the other side (both physically and mentally) and be working hard in grad school before you know it.

I too thought it was strange to only meet with my cardiac surgeon once prior to surgery. It was routine at the facility (IMC Hospital) to have all the testing you describe done just days prior to the surgery. I used google, the AHA site, Mayo Clinic, Cleveland Clinic, JAMA, Journal of Thorasic Surgeons, and similar sites to research and learn as much as I could. There is really good information out there from very reputable sources.

Then, I put my thoughts to paper and got help from my surgical team and my primary care physician. I had (literally) five pages of all kinds of questions for them. I sent the list off to the office and the surgeon personally answered them. I would hope that your surgeon and their team would offer a similar service for you. I think your surgical team should provide reassurance and guidance through the whole process--they are the experts and that is why you are paying them . Not just to give you a nice piece of needle work, but to help with the whole process. The medical profession has fantastic, amazing procedures and processes to fix our hearts and get us healed-up.

At your young age and (assuming) good health, the surgery will be an experience, but TOTALLY doable. I had surgery on a Monday and had to walk out of ICU upstairs to the cardiac floor at 8:00 a.m. the next morning. (I many never forgive cardio rehab guy Toni for making me do that!) I was home resting on the couch waiting for home health care (at my parents house) that weekend.

Sorry, I seem to be rambling. (But I can totally relate to the anxiety struggles.) Just know that if you have any questions that can help ease your mind, provide been-there-done-that insight, or anything else--just reach out!

God Bless, keep safe, and take care! You are going to do great!

 

[Superman]

Good Evening MGary--

I wanted to offer support and reassurance. Days after hitting the big 50, I had my aortic valve and ascending aorta replaced in January 2020 and can completely relate to the freaking out. I don't think anyone who is ever confronted with open heart surgery (regardless of age or circumstances) doesn't freak out. So don't let the freaking out freak you out Unfortunately, the shock and following anxiety is normal--but it still sucks!

Let me introduce you to one of the exceptions. At least for my first surgery. I was born in the waiting room and not if, but when was all I knew growing up. At 17, after a life of restrictions, I was so relieved they were finally going to do it. I was looking forward to the freedom that would follow. I banked my own blood for the procedure (might want to look into that, OP!) as did my mother. I enjoyed being the youngest on the heart floor and the attention that went with it. Overall - I just remember a feeling of relief rather than fear.

The second one, on the other hand. That took me by surprise (aneurysm) and I had a wife and four kids, including an infant at that time. Kind of freaked out a bit there! Same wife and five kids now, so things worked out okay in the end (or middle? Hope it’s not the end!).

 

[pellicle]

Hi

particularly because of the 'regardless of age' point.

I don't think anyone who is ever confronted with open heart surgery (regardless of age or circumstances) doesn't freak out.

I was diagnosed as having a murmur when I was 5, I had my first OHS when I was 12. I totally did not freak out.

Then when I was 28 the next one, didn't freak out then either.

In 2010 I found I had an aneurysm and a leaking valve, and again didn't freak out either.

So what @Superman said is about where I'm at.

We all like to think we know how others feel, but we can't .

The most we can do is listen and offer what we can

 

[Superman]

@BasinBoy25 , I feel compelled to add that our responses aren’t intended as arguments or brags or anything. Just another perspective. Your bigger point that whatever you feel at a time like this is okay, is a good one. Everyone is entitled to their feelings. And spot on with the rest of your advice.

I remember reading new members posts over the years and the anxiety many of them shared. Seems to have to do with knowing one normal your whole life, then having a wrench thrown in the works that feels like you’re not safe anymore. Everything is derailed for a spell. When your normal is “heart surgery is coming, and you can’t do anything until it’s here”, it’s just different.

 

[spartangator]

Hi mgary, just another note to support all these prior comments with their wisdom and perspectives. This is a special group of people.

When my surgery time came (after decades of monitoring), I was also finishing up grad school and in the young adult category. I don't want to pretend anything was simple, but as others have noted, it was also OK with a bit of initial help so there was space to heal and then patience with myself as I got well enough to do things on my own.

I told all my faculty what was happening, and they were uniformly supportive in keeping things on track for me as best as possible. Now, as a faculty member myself, if someone came to me with this situation, my only response would be, 'whatever you need.'

In fact, I had a student about two years ago that was in hospital for an organ transplant, and we managed to keep her on schedule with some recordings, phone calls, and a few extra emails. She said school was helpful in her healing because it gave her something to focus on so we all pitched in. Point being: it can be done. Conversely, I'll point out that school isn't going anywhere, and it's reasonable to pause things should that be an option for you. Whatever choice you make will be correct.

You can do this, and we're here for support.

 

[Superman]

As an adjunct instructor myself, I can echo spartangator’s thoughts here. A little known secret many students don’t realize. The majority of professors and schools want you to succeed! Graduation rates, alumni success, retention rates - they are very important to schools. Even if only for purely selfish reasons of attracting more students.

Speaking for myself, and no doubt Spartangator would agree, student success makes me happy. Teaching one class a term doesn’t give me many opportunities, but having helped students land jobs or make connections leading to jobs, that’s a great feeling.

 

[AZ Don]

I agree that scheduling a consult with the surgeon would be a good idea as would be familiarizing yourself with the pro's and con's outlined earlier of tissue vs. mechanical. Your surgical team probably does multiple open heart surgeries most weekdays, so you should be in good hands. I had OHS at the age of 52 and was walking laps around the hospital floor within days and walking a mile or more at home within a week or two. There really wasn't much of normal daily living that I couldn't do on my own at home, with two exceptions: 1. I could not sleep lying flat so I slept in a recliner for about a month, which I understand from this site is not uncommon. 2. After OHS I was given the directive not to drive for 6 weeks because of risks to the sternum. Where to sleep and how to get around are things you should plan for.

 

[spartangator]

As an adjunct instructor myself, I can echo spartangator’s thoughts here. A little known secret many students don’t realize. The majority of professors and schools want you to succeed! Graduation rates, alumni success, retention rates - they are very important to schools. Even if only for purely selfish reasons of attracting more students.

Speaking for myself, and no doubt Spartangator would agree, student success makes me happy. Teaching one class a term doesn’t give me many opportunities, but having helped students land jobs or make connections leading to jobs, that’s a great feeling.

100% on all this. We really do want you to succeed. It's why we work so much and invest ourselves in our classes (in addition to the very practical incentives @Superman mentions).

 

[Chuck C]

mgary622
Also, given your age, consideration should be given the Ross Procedure. Ihttps://my.clevelandclinic.org/health/treatments/16744-aortic-valve-ross-procedure
Personally, given the good long term outcomes, if I was in my 20s this is the procedure I would probably be looking at. It is a more complex procedure and it is imperative to have it done at a facility which specializes in it.
Best of luck and please keep us posted.