Probably surgery this summer...have some stupid questions!!

[mtmom]

I joined this forum a couple years ago but needed to take a break. I was just getting too obsessed with everything and felt it was taking over my life. Anyhow.... i have BAV and my stress echo last fall was not good. Mean gradients are in the severe range. I was put on Beta blockers to try to calm everything down but I could not tolerate them. I have really low BP normally plus a rhythm disorder that they actually made worse! Go figure. Well, at last Friday's cardio appointment they told me to get ready. He wanted to go ahead with the heart cath but I put him off until the end of May. ( my first grandchild is due the end of April and I want to be there for my daughter. Sooo excited) Now all this is back on my mind. I am dealing with it better after a few days to internalize everything but I have a few really stupid concerns!

1. The heart cath: I've had one before so I know what to expect but I can't get the size of my pecan bladder out of my mind. There was so much liquid going in that I was exploding with pain and chills. I had to pee before, twice during and barely made it out of the room when it was over. How embarrassing. I refused to take the calming meds as i do not tolerate those very well but I also got some really good anxiety going on in there toward the end. I do want to take them this time but fear I will pee all over the floor. What the heck to do? Is this common? Do others have this problem? Is it unusual to say..wait I have to pee in the middle of everything? What are your experiences??

2. I'm worried about waking up on the vent. I have really back central seep apnea and worry that I will be on the vent longer than normal. i just do not breath when I'm sleeping. I have a vpap machine with a back up breath rate for every 6 seconds. How are they going to get me off the vent when I'm still sleeping and going through that waking up state??

3. And lastly...but probably not really..... i asked him if there was the chance that the gradients would go down when he got in there with the cath. He said they could go up from what the echo showed but not down. Why is that? Can anyone explain this to me. Just curious. I didn't ask him at the time as I was shutting down at that point in the appointment! Thanks all.

 

[DebbyA]

Hi Mtmom,

You pose some challenging questions, and I don't really have complete answers. For the first, I'd say explain your problems/ concerns before you have the cath and let the medical staff deal with your body fluids--they're used to it. Also talk to the anesthesiologist about calming meds in case there are better options for you. For the second, be sure you have an specialized cardiac facility, and again, explain the problems you anticipate. I think a lot of concern about "the vent" is based on older accounts of surgery experiences. For the third, call and ask for an explanation.
Actually, I think you should go ahead with the cath. February to May is a long time, and experience of symptoms accelerates once you're near the severe range.

 

[Paleowoman]

Hi Mtmom - knowing you will be facing surgery is very stressful, but the more you can know about it the eaiser it is. Also telling your doctor about how strssed you are he/she may be able to give you something to help calm you.

I never had a heart cath as they gave me the option of having a CT angiogram which is far, far less invasive. I wonder if you could ask about that ? It my not be an option for you but there's no harm in asking.

I was really worried about the vent and waking up with it in my throat, I think all of us worry about that. I spoke to the aneasthetist and hospital staff about my concerns. In the event I don't remmeber it at all ! Well, I vaguely remember it being dark and someone talking loudly to me but I didn't feel the vent and the next thing I knew I was sitting up in bed in ICU feeling really great ! I never even felt thirsty ! I think they give meds now that give a bit of amnesia so you don't remember it too well. I got my husband to take a photo of me on the vent becasue I wanted to see what it was like for me - I actually look quite peaceful on it. Anyway, do talk about your worries to your medical team.

 

[tom in MO]

I took the meds for the cathertization and it worked out fine. I missed the whole thing. : ) Discuss your concerns, they may be able to give you some options you have not thought about.

Per sleep apnea, I believe when you are on the ventilator, it will breath for you, so there is no worry. My ventilator was gone before I woke up, that happens to many if not most. I have severe sleep apnea but was in denial when I had OHS. I had a diagnosis, but had not yet gotten treatment. I did tell the surgeon and anesthesiologist. They told me I could bring my machine...but I did not yet have one.

I had my surgery done on 2/24 and was back to work after 8 weeks. If you have the surgery now, you will be OK except for heavy lifting when the grandbaby comes.

 

[Rebecca]

With my heart cat I had to pee after they were done. I used a bed pan. You may want to ask them if you can have a urinary catheter. A lot of doctors do the heart cat through the wrist and they put a pressure bandage on. With this type you do not have to hold pressure on the groin.

I woke up with the vent and felt really good. I was so glad to wake up in recovery and not heaven. I remember trying to motion with my hands that I wanted a drink of water. You can’t drink when you have a tube in your throat. I do not remember them removing it. Having surgery I was afraid that I would be too sedated to sit up when I couldn’t breathe. Before having surgery I would sometime have to sit up to catch my breath. I thought this was because my nose didn’t work right. Thinking back I should not have had this fear because your machines are constantly moderating you. After having surgery I could breathe so much better.

 

[mtmom]

Thanks for all the responses. It was weird, I've known this was coming, but I just shut down at that appointment! I did not even know what to ask.

 

[Agian]

Thanks for all the responses. It was weird, I've known this was coming, but I just shut down at that appointment! I did not even know what to ask.

That's what happens to me, as well. I try to write any questions down beforehand.

 

[Paleowoman]

That's what happens to me, as well. I try to write any questions down beforehand.

I write down all my questiosn beforehand (in fact I keep documents open to which I add questions in the weeks preceding the appointment - saves ruminating on the questions or worrying I'll forget what I want to ask) as well as writing down anything else I think I should tell the doc. You know what happens - my daft brain must on some level think I've asked those questions because I've said them in my mind, imagining I'm seeing the doc, and so, if I don't have pen and tick off the questions as I go along I don't always ask them ! Crazy ! And the other problem is that you don't know what the doc is going to say and so that screws up your questions, and more questions come to mind after the appointment which I wish I'd asked ! Still, writing everything down is better than not doing so because at least there's half a chance of getting what I need from the appointment !

 

[epstns]

Thanks for all the responses. It was weird, I've known this was coming, but I just shut down at that appointment! I did not even know what to ask.

At future appointments, try to bring someone else with you. That way, when your mind "shuts down" (it really isn't shutting down, it is just focusing on one thing while other things are being said), your "advocate" can absorb the information and relay it back to you later. This also helps when, after the appointment, you are not really sure what you heard. Your companion can recall more clearly than you.

 

[Paleowoman]

I know everyone is different, but I have to say that bringing a companion to a doctor's appointment usually works worse for me becasue I find that I start 'protecting' my companion….my husband I mean and there wouldn't be anyone else who I'd want to bring if I were going to bring someone. I find that with my husband at the appointment that I won't ask the kind of questions that might worry my husband but which are worrying me. I don't know, but it's hardly ever worked for me though I know many people say it helps them. Mind you, one time when I took my husband with me, when I had my initial referral to cardiac surgeon, I was very glad that he was there. I'd taken him as I felt it was only fair for him to come along since he was going to be caring for me at home on discharge from surgery. I was glad because the surgeon was so rushed and didn't listen and my husband was able to confirm that to my cardiololigst who otherwise might have thought I was simply being negative about the surgeon or had misunderstood her !

 

[mtmom]

Thanks everyone. I guess I went in thinking all was ok and I'd see the cardio in 6 months! Oh well!! I will not know if they will have to mess with my aorta until after the heart cath. If they don't have to touch that then he said it would be minimally invasive through my ribs. How long does it take to recover from that? Thanks for all the replies and the suggestions.

 

[MrsBray]

Hi ! My name is Meredith, and I try to meet every challenge with a sense of humor. I had two heart caths and they were completely different. The first one was awful - I had no idea what to expect, and hadn't spent any time in a hospital since 1973. The knock-out drugs weren't really knock outs, only more of a twilight. I remember almost all of the procedure, and really wish i didn't. When they moved me to a recovery room, NOTHING was mentioned about fluids or bathroom or food, only ,"DON'T MOVE! DON'T LIFT YOUR HEAD! " Me, being ever so modest, decided to "hold it" until I was released, about 6 hours later, after being [pumped full of fluids. So I got up, went to the bathroom (ahh, sweet sweet relief!) and got dressed. As I reached down to tie my shoes, everything went grayish-black, and i said, "I don't feel so good" and ended up being surrounded by (not-really-cute) nurses and attendants and a crash cart. So I stayed over in the hospital.

A year later, I had another heart cath. I clearly told the nurses what happened last time, and that I have never used a bedpan, and I didn't want to make a mess for someone to clean up, and so on. They assured me everything would be fine. The knock out drugs were awesome - the guy told me it was worth about 3 shots of tequila HAHA! When I got to the recovery room they brought me lots of water and a sandwich, and gave me a quick lesson on how to use a bed pan. It was weird to pee in bed! I'm pretty sure I made a mess, but the nurses insisted I didn't (as they were changing my sheets... HAHA again! right?) They also have really absorbant "pee pads" that they can put under you just in case, similar to piddle pads for dogs? Oh jeez, it's ok , they've seen MUCH worse than someone with a little bladder, just smile and be humble and thankful for nurses, they really run the hospitals and doctors offices!

I have sleep apnea also, and I was worried about the vent after surgery. The first time I woke up was for about 3.8 seconds - long enough to see the clock, be thankful I was alive, and notice there was a vent tube in my field of vision. The next time I woke up the tube was gone. My biggest issue with breathing after surgery was taking deep enough breaths to keep the oxygen flowing. I kept falling asleep and breathing very shallow. At one point I got a treatment of sodium bicarbonate to balance my blood gases. I didn't feel it - after surgery you have a semi-permanent port installed so they can draw blood and give meds without sticking a needle every time. it's painless, I promise!

I was required to bring my cPap machine with me. I was so grateful for that machine the first few nights, it really helped me with my breathing exercises, and reassured me that I wouldn't stop breathing in the middle of the night. The first two nights the nurse attached oxygen to my machine as a backup. Again, painless and reassuring! the only problem I had with my cPap was the nurse had to put the mask on my face/head because I couldn't lift my arms up high enough. it was COMICAL, because he had never put a cPAP mask on a patient before, bless his heart. (He was a young guy, maybe 22...he's also the one that went pale as a ghost when I told him I had started my menstrual cycle and needed some help. I ended up with two other CNA's helping me. Bless THEIR hearts!) Maybe have someone try to put one on you before surgery and see if you can come up with good directions on how to do it it?

I don't know anything about gradients - I don't know what mine were or are. I know have a mechanical aortic valve and am on warfarin. My lifestyle HAS changed because of heart surgery - I am more active, healthier, and happier without the weight of future valve replacement hanging over my head. The six months between my last 2 echos were nasty at my house - I was so anxious because I KNEW what was coming with the next test. And of course, the 5 weeks waiting between the time we set the date and the actual surgery were THE WORST as far as anxiety. but it's all behind me.

This is a FANTASTIC site to get questions, answers, confirmations, reassurances etc. I used this site to gather info for myself, to ask questions i didn't want my husband to hear (because I didn't want to worry him, like PaleoGirl said above). I used Adam Pick's Heart Valve journal for the more social aspect - keeping in touch with friends and family through the surgery and recovery. But valvereplacement.org was my touchstone in the months leading up to surgery.

It'll be fine! Rough and tough, but fine.

 

[mtmom]

MrsBray, I read your response and then cried. Not because of anything you said but because someone I didn't know would take all that time to write me such a thorough and helpful note. I am thankful for you, this forum and all those that took the time to help me. Thanks so much.

 

[MrsBray]

Aw shucks! Also, just a real heads up - if you haven't hit menopause yet, you NEED to read some threads around here "for the ladies." So you don't freak out. What's the jingle from the tv..."The more you know..."?

 

[mtmom]

Well, at least I don't have to worry about that. I went through premature menopause and was done in my mid thirties! But out of curiosity I will check out the threads!