hola, new member!

[pikacat]

just thought i'd post here among people who understand. maybe there's some people who know me from some other heart forums. i'm 30 years old and just finished law school. my first open heart surgery was in 1999 after an endocarditis bout. and it was a cleft mitral valve repair at UCLA with dr. laks. in january, i started feeling poorly, and my cardiologist thought we caught stuff early because my echo was still stable and thought we could schedule my surgery at my convenience. however, after my finals, i had another echo and my left ventricle had grown 5 mm in size in 4 months, and i had gotten pretty sick.

he sort of wanted to do my surgery now (aortic valve replacement and possibly replacing the mitral valve because it's getting kind of eh too), but if i did, i'd have to wait until next february to take the bar exam again and also, the bar said i couldn't get my money back -- so i'd lose out on the fees and pay for it again in feb. which was quite a hit and would really put me back on my job search.

so as it stands, i have an echo 3 days after the bar to see if i need surgery right away or if i can hold out until september, which would be optimal because my mom does not qualify for family leave because she works part time and she happens to have vacation in september. otherwise, she'd just have to tell her job, "oops, got to go" so she can take care of me in august and it wouldn't be protected leave.

so, i mean, aside from my whole not really wanting to do the surgery thing again, and considering stuff like probably no kids and all (going for the mechanical -- i just don't want a third surgery), it's been kind of bad timing. though there's never GREAT timing.

in the meantime, i've been trying to study for the bar (not very well) and getting in my last tattoo work (i'm pretty heavily tattooed) before my coumadin starts sooooo.

fun times! anyway. thought i'd vent a bit about that and all the medical bills while unemployed and trying to take the bar haha. thanks for listening to me whine. i've just been a little stressed, but i'm looking forward to feeling better, i guess. and i'm especially looking forward to this being the end of it all and no more worrying about when will i have my next surgery.

 

[malibu82]

you are right, what bad timing! sorry you have to go through all of this when you are trying to take the bar. good luck though! i never realized that if you take coumadin no more tattoos. makes sense now that i think about it but i never even thought about it! i'm a little slowwwwwww.

take care

 

[pikacat]

i'd talked to quite a lot of people about tattoo work after my surgeon told me it would be a no go because it was really important to me. apparently the deal is that for most people, the excess bleeding and bruising makes the ink fall out and gives it kind of a "prison style" look no matter how good of an artist you go to. my current artist told me she's tattooed a few coumadin patients and it's really individual. some people can do it, but you should get a small test tattoo done first. she said usually extensive color work is out, though line work can be ok. and if you can get tattooed, you should do it in very small pieces at a time if you were planning on doing something like a full back piece.

thanks for the good luck wishes!

 

[Julieaka]

love to you both - while I haven't yet had my surgery (days/weeks out) and I am not an "old lady" at 43 - I remember well the 20s and 30s days and i promise my first time I was headed it I was all bovine valve so I could do all the things we want to do/think we need to do while we are "young" lol ....... now I am going mechanical, bionic! hahahaahah.... and there is NO GOOD TIME!

 

[pikacat]

definitely no good time! and yeah, the valve choice is certainly weighing heavily on me. the allure of doing all the things i want to do is really strong. but after everything i've gone through (and heck, yeah, i know people have gone through way more), i just want everything over with.

 

[ARGreenMN]

Pikacat - sorry about the rough timing. That does suck. Last thing you need while trying to study... But, maybe it's a blessing in a way - the studying will probably keep your mind off things a bit (if you're able to concentrate). You have to do what's right for you - and it sounds like you're weighing the pros and cons on timing properly.

And I wish I'd run into you about 3 months ago... Crap - I think about the tattoo thing before surgery.... I've always planned on getting one someday and didn't even THINK about that as I was making decisions on valves, getting prepared for surgery, etc. I chose mechanical, and wouldn't do it any different, but if I would have thought about the tattoo, I would have gotten one during my 5 week wait before surgery... Dang it... Well, the good news is I don't think I'd want colors, so maybe I still have a shot (since I'd only get lines)... Hope so...

Best of luck, and you've found the most awsome place there is to ask questions, vent, get support, etc. So keep posting!

 

[Mentu]

Pika, venting is allowed. When to schedule surgery can be a problem but your cardiologist and surgeon will tell you if they think waiting isn't wise. As for recovery afterwords, many of us didn't need much care after a couple days at home. I think it is good for one to quickly return to doing some of the normal things such as fixing breakfast, feeding the cats, laundry and such. I hope all goes well.

Larry

Larry

 

[Lynlw]

Hi Welcome, Sorry the timing stinks, but as you said there is no great time to have OHS. You might want to wait to talk to your surgeon and decide when you will be having surgery to get your tattoos, some surgeons really prefer to wait a certain time period after tatoos because of the slim chances of getting an infection, so IF you need it right away, that might be an issue. IF you can put surgery off, no problems.
I'm sure you know the laws much better than I do for the Family leave act, but if the place is one that has to give fulltime employees the time off (more than 50 employees, ect) I thought if you work a certain amount of hours in the past year (close to 100 a month?) that part time employees can be coverred. I'm sure since you are studying for the bar, if your Mom worked enough hours to qualify, you would know that, but mainly I wanted other people that might read this thread in the future to know part time employees MIGHT qualify.
Also I'm pretty sure the amount of time worked to qualify for FMLA can change (be lower) depending which state you live in.

Also Justin has a tattoo, he isn't on coumadin, but before the guy would give him a tattoo he asked if he was (since the tat is by his incision the guy knew he had OHS) because many tattoo artists, will not do one on someone on coumadin. I think mainly because they can blur and look bad, and they don't want their work to look bad if people ask who did it.

 

[pikacat]

hey lyn,

oh yeah, i did this my last surgery (got one last tattoo RIGHT BEFORE surgery without asking and the surgeons were peeved haha). this time, i'm cutting it close again. but i'm really wanting one last great tattoo and i'm REALLY hoping they let me hold out until september. then it wouldn't be too close. if i needed surgery early august, yeah. i'm being a little naughty. i know we all have our own priorities, and some people can't really understand what tattooing meant to me. it meant *a lot*.

it depends on your state how FMLA applies. federally, there's no coverage for part time workers, and the law kicks in if the employer has 50+ employees. the employee is covered by the law if you work 1250 hours in the past year. your state can choose to make a law that covers more people -- in fact, the federal law doesn't even apply if you want to take care of an incapacitated sick *adult child*, but my state does. then my state applies only to employees who have worked on average 25 hrs a week in an employment setting of 25 employees. anyway, i know no one wanted a legal lesson. but yeah, she's not covered. i even asked my employment law professor haha! if it comes down to it, i am friends with an employment law lawyer and maybe he knows some loopholes.

but bottom line, it often comes down to the employer just having a heart.

justin heard right about tattooing on coumadin. a lot of peoples' blur. i'm still going to see how tattooing goes on the other side of it though. i'm hoping i can still do it to some extent. i know a lot of great artists who will do it so long as you're aware of what's probably going to happen and are willing to go for a test run.

 

[pikacat]

Pika, venting is allowed. When to schedule surgery can be a problem but your cardiologist and surgeon will tell you if they think waiting isn't wise. As for recovery afterwords, many of us didn't need much care after a couple days at home. I think it is good for one to quickly return to doing some of the normal things such as fixing breakfast, feeding the cats, laundry and such. I hope all goes well.

Larry

Larry

thanks larry! i'm waiting with my surgeon's blessing

my mom will be really relieved when she hears what you just said. when i had surgery 11 years ago, it was a nightmare. really difficult. a lot of pain, i was really incapacitated. no way could i have done laundry a few days after being home. it seems like the recovery time has really cut down since then. if anyone is reading, i'd love to hear about recovery now! i'm going off on how it was a while back and it clearly isn't the same anymore. my mom will be so relieved when i tell her.

 

[pikacat]

andy, you can still try and post the pictures!

thanks for the welcome.

 

[Lynlw]

thanks larry! i'm waiting with my surgeon's blessing

my mom will be really relieved when she hears what you just said. when i had surgery 11 years ago, it was a nightmare. really difficult. a lot of pain, i was really incapacitated. no way could i have done laundry a few days after being home. it seems like the recovery time has really cut down since then. if anyone is reading, i'd love to hear about recovery now! i'm going off on how it was a while back and it clearly isn't the same anymore. my mom will be so relieved when i tell her.

First let me say, so I dont forget it I can't imagine doing laundry a couple days after getting home, but other things, that don't involve a lot of lifting or stretching like making a sandwich, easy cooking , getting showered, dressed ect should be fine for many people the first week home. I don't know if you live at Home or if you will be staying with your Mom/parents or if she has to take time off to go to your house, but if you'll be with her and she will be close to her job, many people are fine, if the prerson taking care of them goes to work after your first week or 2 home and you'd just be alone those hours. (People Have done it, but I wouldn't advise it is if wasn't necessary, but live alone and have to do everything.) But if they will be with you most of the day and leave food counter height ect do normal housework for you, Unless there are complications you probably would be fine if your Mom took your first week home off, especially since she works part time and would be home with you the other days. You also won't be able to drive for a few 4-6 weeks so will need somene to take you to appts, food shop ect.

There are a couple people that had surgery years apart here, but most have had one so it is hard to compare what recovery was like then and now. Justin had surgeries at 10 (98) then 17 (05) and 2 at 19 (07) and in that time frame for him at least there weren't big changes. He got out from the hospital about 7 days after his surgery at 10 and 4 days at 17 and 19. Now he WAS readmitted 10 days after surgery for complications/infection but up to the day before he was readmitted, he was doing his walks a couple times a day, getting around fine and pretty much off his pain meds. Same amount of lines, cath, the chest tubes were slightly thinner.
(now there were alot of changes from when he had his first surgeries in the late 80s and was in the hospital for weeks )
Pain really seems to depend on the hospital and person. Justin's hospitals/doctors ALWAYS had pain control as a high priority, it was discussed before his surgeries how important it was to keep the pain under control, not only because it is much better to not be in pain, but also speeds your recovery helps you walk more do your breathing and other excercises if you aren't in pain. They always tell Justin, not to try to be brave, this really isn't a case of no pain no gain, and to be honest when they ask his pain levels don't downplay it. It is much easier to keep on top of the pain if you take your meds BEFORE the pain starts getting bad. Justin has said (and I've heard it from many other people) he was more uncomfortable and not really in pain in the actually incision. Alot of people do have sore neck back muscles from how they have you positioned on the table, but even that issn't as bad as what you went thru. Some Hospitals seem to have pain control higher priority than others, I would talk to everyone, surgeon, cardiologist, anestheasia, BEFORE surgery at the pre op day, that you had a bad time with pain your last surgery and you don't want to go thru that this time,

IF you are interested, In my signature is a link to Justin's caringbridge page we kept it for updates during his last few surgeris and you can read what he was able to do when if you are interested I can give you the dates of the surgeries so you don't have to read everything

 

[ARGreenMN]

Ok, will do (on the pics), but it'll be a while yet - gotta get back to the gym first and can't start that for few more weeks. And now I'm curious whether I'll have trouble finding one that will be brave enough to try it - but only time will tell.

On the recovery time, it must have gotten significantly better since you had your other surgery. Either that or you were one of the more uncommon cases that had a harder time than average. Most of us that have gone thru it recently have recovered pretty quick. A lot of us have had road bumps during recovery, but all relatively minor in the big scheme of things. I was shocked how quickly I felt like doing stuff around the house. For example, I was swiffering (but not allowed to vacuum!) up dog hair the day I got home, 5 days after surgery. I could have gone home on day 4 easily (they even asked if I wanted to go home on day 3) but was easier for me to line up a ride home on day 5 so they let me stay an extra day and 'enjoy' the hospital food, lol. But things like doing dishes, feeding the dogs, putting away groceries, small loads of laundry (as long as I didn't lift over 10 lbs at a time) making meals, etc. were all very doable for me pretty much as soon as I got home. I basically live by myself, and had people come 'baby-sit' me the first couple days back home, and while I don't think it was absolutely necessary, it was kinda nice to not HAVE to do so much myself for the first couple of days. By the third day home or so though, I think I was pretty much easily self-sufficient - except for driving... It was a little challenging to constantly have to line up rides dr. office visits, grocery shopping, etc. I don't know how typical my experience is these days, but my impression from reading other posts on here from people that went through it about the same time as me (5 wks ago) is it's more common than not common. And different people are likely going to be different. So your mileage may vary. But that's one guy's story.

Lastly, especially since you're so young (like Dan in this video) I found it very comforting before my surgery to watch these videos he made on Youtube. I'd say my experiences and overall feelings (including being able to take my shirt off easily like he does in these videos, which I feared not being able to do) were very similar to his experiences. So I'd recommend watching at least a couple of the below. He's also got some (see right hand side of screen as you're watching these) from before surgery and all the way up until a couple months after.

Aririving home - 4 days after Surgery
http://www.youtube.com/watch?v=xaCvvgcL-hU&feature=related

1 week after surgery (3rd day being home) Note, he's really feeling great by this day, which I totally related to at about that same point
http://www.youtube.com/watch?v=H5RdSd25J2k&feature=related

2 Weeks after surgery
http://www.youtube.com/watch?v=Kde95-mbwj4

 

[pikacat]

oh, i must have misread larry's message i was just overexcited.

my mom lives 5 hours away from me, so it's a little difficult. she'll be coming up for a little bit and taking my dog until i can walk him again (he's very uh. active and large and pulls big time when he sees squirrels and other animals).

hm. i remember in 1999, my chest tubes were pretty large, about the diameter of a quarter, and stitched in. i think that's because i had like the "cosmetic incision." but i also had smaller ones.

my pain management was really butchered. i actually had a really bad surgery experience in general. at the time, they told me i should ask for pain medication when i was in pain in the hospital. putting the expectation on me was really difficult because i was so out of it, i rarely understood why i was in so much pain or why i couldn't move/swallow. i almost never asked for the medication, and they were like, "haha well you should ask for medication silly! you're allowed it every x hours!" but it never occurred to me. they also told me i should be the one asking for breathing exercises (which i never did). i never had a single breathing exercise while i was in the hospital. it was absurd making a teenager who just had OHS request these things. 7 days into it, i still couldn't swallow solid foods. then i ended up with a fever and was in a wheelchair a few days after discharge and was really out of it. i asked for a change in my pain medication because it was making me feel even worse (made me nervous) when i was feeling sick and could barely move and they basically gave me the whole drug seeker routine. i was in a tremendous amount of pain the whole time. anyway. and it wasn't until just now that i found out most people aren't conscious during the whole ventilator thing, which i found really horrifying and dreaded revisiting.

anyway, thanks for letting me know -- i'll definitely check out the links. i'll definitely be proactive. the more i read about other peoples' experiences, the more i realize that my experience was not really normal even for 11 years ago.

 

[pikacat]

thanks andy.

i can't imagine swiffering the day after getting home. i was barely able to walk until maybe the third week. this makes me feel a lot better. i'd been dreading going through what i went through again.

 

[Luckyguy17]

Hi Pikacat,

Welcome to the forum, am just under 4 weeks post op on 1st OHS and all is well for me.

Hope you can sort out the schedule, pass your bar exams and then get it done, so that all can work out, on your preferred schedule and yet get the surgery in a timely fashion.

Many good comments from members in this thread and only have a few things to add.

Firstly for mobility, it is good to have someone live in for at least 1st week at home, in my case, I have had live in help for 1st 3 weeks, but I live rural, in a big home and for last 2 weeks assistance was really for company and for driving in to anti coag clinics and getting around, as there is no walking option from where i live.
If you live in city, have access to buses and public transportation, from 10 days post op on, this could have worked well for me and getting around a non issue, but you need to be careful about lifting for quite a few weeks, (6 weeks recommended) so weight of groceries etc could be an issue for at least 3-4 weeks +....to be careful about and plan for.

Re big unruly dog, leash not recommended for several weeks, so you may need to make accomodations for the dog, as the leash pulling motion could do serious damage, especially on the squirrel chasing jerk...my Golden Retriever is 5 years old and in our rural setting, can be off leash, so this was not an issue for me, for 1st week at home on., But we did park Jessie Golden with a friend while i was at hospital and spouse was commuting to work and daily hospital visits.

You may want to ask your surgeon about "kryptonte glue" as an option for sternum closure, as this will cement your bones much quicker, i received it and am quite pleased at how it may have contributed to a relatively speedier recovery...but still better to be cautious and not risk damage from lifting.

So welcome and all the best in sorting out things out pre op and hopefully with the pre op tests, the surgeon can determine all that needs to be done so that 2nd OHS is hopefully the last one, addressing all

 

[ARGreenMN]

I just read your other post about your bad experience. A lot of it makes sense now... Without them continually reminding me to do those breathing exercises, I'm sure my lungs would STILL be full of fluid... But that little plastic breathing exercise thing they give you works wonders. Make SURE to do it several times a day early on. Makes a HUGE difference. And don't get discouraged if the first couple days are tough - it gets a lot better after that (I was only able to get it up to 1000 the first couple days, then started progressing on day 3 - by time I had been home a few days, had it up to 3500 and lungs felt great). Also - the pain meds - yea, don't be shy about asking for those puppies! When they ask, do you want any, just say YES! They tell you to stay ahead of the pain - and I think it works - helps you get up and walking faster. Which is also very important. They had me sitting up in a chair 20 hrs after surgery. And walking shortly after that (although I had to stop halfway down the hall that first time to catch my breath - it got much better in the subsequent walks). And on the breathing tube - I'm right there with ya! I was totally awake for a while before mine finally came out. I've got several other posts on here where I describe it in detail. Suffice it to say, I didn't like it (and it was my biggest fear going into the surgery). But once they realized I was awake and didn't like it, they took it out pretty quick. And it didn't hurt coming out. So it wasn't THAT big a deal (easy for me to say now, lol). The key while it's still in is to relax and just breath thru the tube... It sucks cause it doesn't feel like you're getting enough air, but you are, as long as you're relaxed. If you panic (like I started to) then it gets worse. Anyway, keep posting questions! I'm sure you'll have more, and this place ROCKS for getting answers!

 

[pikacat]

hi andy,

yeah. i panicked a lot and bit down on the ventilator tube because i wasn't sure what was going on. then i couldn't breathe through it. it was not a very fun experience and it took me a while to understand that when i panicked and bit down, that's when i couldn't breathe.

in retrospect, the hospital i was at was not proactive about my care really and left me to my own devices to ask for pain management. they never asked if i wanted any, and i just never understood why i was never getting better. i also was severely anemic and needed 7 transfusions which added to my confusion. anyway, i had a really bad time of it. it would have been a lot better if they had proactively medicated me, because i was really not well enough to understand what was going on at the time. i was just getting sicker and sicker, but not understanding why. they saw i couldn't eat, but were just like, "well you should ask for more medications/breathing exercises!" but then i never did.

hopefully this time will be different. at least this time i've specifically told the surgeon about my problem regarding the ventilator last time. and i'm definitely going to talk about my pain management problem last time. i seriously thought that my pain/incapacity level was normal for OHS until now. it was THE reason why i never want to go through it again and am going for the mechanical valves. it was just an awful experience. it wasn't until about a month later before i could do things really.

 

[kfay]

Pikacat, these are exactly the reasons why EVERY patient should have someone with them at the hospital advocating on their behalf. If you are in pain and have just had major surgery with major drugs involved, it is almost impossible to make reasonable medical decisions on your own behalf. My husband rarely left my room while I was in the hospital. I didn't have the same issues you had, but it was reassuring to me to know that he was there watching everything that was going on. Hope you have a better experience this time around.

Kim

 

[pikacat]

Hi Kim. Yeah, my mom called me the other night and expressed regret that she also didn't understand what was going on during my first surgery/didn't understand that she could be an advocate and said she would try to be a better advocate this time. It was really just too bad. I think a lot of people just assume hospitals are doing what's right. Honestly, I didn't even know until now that she was aware as to what I was going through.