What's your best advice for supporting someone pre/post op?

[Teresa UK]

My husband, Steve, is a lovely, kind man who will do anything for anyone, so long as someone explains what it is he's got to do. He has asked an old friend to support him supporting me on the op day. They are meeting for a drink tomorrow and Steve said he'll let Paul know what to expect on the day of the op - after I've explained it first to Steve tonight in one easy lesson! They are both fairly quiet, don't like to make a fuss, thinkers rather than doers and, of course, they have not had the benefit of months of reading advice on this forum. What I?m trying to say is they will not have a natural feel for acting as my advocate on the day ( but I love them anyway!). Steve also needs to be prepared for how I?ll look. The little booklet the hospital gave us is woefully inadequate. I have read many posts where people write in detail about what happened pre- and post-op but I cannot for the life of me find any of them again. Many of you have been here, done that, bought the book, worn the t-shirt. Can you please give me your best "with hindsight" advice for supporting someone in the hours/days post op so that I can pass it on to Steve? I would appreciate all and any comments - I've got loads of time for reading now as it's half term/Easter holiday! By the way, my only major fear, which is driving me crazy, is an absolute, utter terror of waking up with the vent in and not being able to control my own breathing/swallowing for even one second. And if they've tied my hands down, I'll have a heart attack right there and then. (Do you hear the panic?!?!) Other than that, I'm fine, twitch twitch. Thanks for taking the time to read this.
Teresa

 

[Nancy]

Here is a terrific site which was written by a guy, Steve Goldberger, musician, who had heart valve surgery. The nice thing is that it is his journal as he went through everything, and it is written in an easy and sometimes humerous fashion. Steve used to come around this site from time to time, haven't seen him in a long time.

http://www.stevegoldberger.com/bt/BumtickerHomePage1a.html

It helped me to visualize the pre-op and post phases of my husband's surgery. I think your husband will "enjoy" the read.

This site, VR.com is the best for practical and detailed information in all phases of this surgery.

I don't have much time right now, but I will post again on what I experienced helping Joe recover from several thoracic surgeries.

 

[Rivet]

By the way, my only major fear, which is driving me crazy, is an absolute, utter terror of waking up with the vent in and not being able to control my own breathing/swallowing for even one second. And if they've tied my hands down, I'll have a heart attack right there and then.

When I woke up, I still had the breathing tube. It wasn't that bad except for the fact that it dried my mouth out a real lot. Just don't fight it. You'll still be able to breathe on your own.
You'll also still be somewhat in a daze, so panic is not really an option.
The first thing I asked for when they removed the breathing mask/tube, was ice chips.

 

[geebee]

Teresa,

I am happy to hear your husband will have someone with him while he waits. Waiting for you to get through surgery will be one of the hardest things he will ever have to do. Having a friend will be great. I am not sure it is easy to prepare someone for how you will look in OH recovery. There are tubes and machines everywhere and I am told it is not pleasant other than the fact that you are ALIVE. Tell your husband he needs to focus on that and he will be fine.

Oh - the breathing tube. I woke up each time with it still in. I am happy for those who did not but that was not my experience. Having the tube in, per se, is not that difficult. Your lips will get very dry but they have wipes for that and sometimes they will wet your lips with ice. The worst part is when they have to suction out the tube but it is very brief. Just focus on trying to breathe through your nose at those times and you will be fine.

OH recovery mantra - "I made it, I made it, I made it!". Any discomfort will pale in the light of being alive.

 

[Natanni]

Hi Teresea

My husband is 34 and had his BAV replaced in Sept 05. I am opposite your husband in that I am a 'doer' and having been a nurse since 1991, and assisted in surgery since 1998, this wait during Nathan's surgery was the all-time worst experiences to date. Helpless...

I had Nathan's parents as support, and they are well versed in open heart surgery as his Dad is a heart transplant recipiant going on 15 years. Our kids were 13 and 9 years at the time, and they kept themselves busy with books, game boys and such. Nathan's Dad was incredible...I was falling apart on the inside, and his Dad got us going on a subject, "Who was the actor in A Man Called Horse....." This subject, completely deviated my thoughts at the perfect time, shortly after it was announced that Nathan had went on bypass. Then he ran for Star Bucks coffee and basically kept us all upbeat.

Nathan and I devised hand signals to use when he was intubated, and he used them, and they worked. He then went beyond the signals and started spelling out "pull out tube...pulll out tube" in the air with his hands. As far as preparing for what you are going to look like, I think some of our members have posted pics here. What I did was make myself available as much as possible, and tried to help Nathan communicate his needs. Alot of what I did came from mostly being a nurse, but that is what I myself felt like what I needed to do.

Best of wished to you and your family!!

 

[Computec]

Post Op Memories

Post Op Memories

Hi Teresa...

My wife is a student in a nursing program and used that in many ways to aliviate her experience of my post-op time. Here are some of her observations to add to the thoughts of others.

My wife's first view of me was when I was wheeled out of the OR. I was covered in Betadine from head to toe and was an odd color. I was intubated and unconscious.

After being installed in my little room in the CCU she had a good look and saw the three drainage tubes as well as the IVs and cateters in various and sundry places. Two of the catheters were sewn in on the right side of my neck.

During the next three hours she sat beside me and held my hand and listened to the CCU nurses at the nursing station discuss removing the intubation as soon as possible. The monitor on my lung function showed that all was well BUT they couldn't remove the respirator unless I was conscious to ensure that I was breathing fine on my own.

The problem was that I was achieving consciousness but not staying there long enough for the nursing staff to see me and my displeasure with this setup. My wife held my hand and rubbed it gently while talking to me, telling me that I needed to stay awake. During my bouts of consciousness I was in obvious distress with the tube and, if it weren't for my hands being tied to the bed frame, I would have liberated myself.

The upside of this is that the anesthesia used in the OR is very good. I was in LALA Land to the extent that my memories of all of this are very vague. The anesthesia also helps to keep any pain at bay. As long as you have the tube in they want to keep the pain killers to a minimum because the pain killers will depress your respiratory system. They want to make good and sure that your lungs are on automatic pilot so keeping the tube in is a failsafe until they're sure of everything.

I concur with other comments here that the procedure of clearing the lungs of mucus if you start coughing is the worst, but then coughing after OHS is a special thing altogether.

By the way, when my wife/advocate showed up the next morning to see me I was back to normal color and awake. The fairies had cleaned me up during the night and I was loaded with pain meds.

All of this aside since, as the others have said, you'll be repaired and alive and that's what this is all about.

Tell hubby that although he'll see a lot of activity going on around you, you'll have a nurse assigned to you. He can ask the nurse for explainations of anything and everything. My wife says that he should eavedrop on the nurses' conversations for reassurance. He should not hesitate to express your wishes to the nursing staff, whether it be for pain meds or water or a bedpan as the case might be. Hubby knows you best. He will know if you're serious when you whisper "Pain Meds Please". He needs to know that the CCU/ICU can get busy and that he is your advocate. It's not negligence for the nurses to not get to your request immediately but he should make sure he's a pain in the butt for them if they're too slow. It sounds like this might be against his quiet nature but this is serious stuff and your advocate must be moderately aggressive for you. The truth be told, you'll be hard pressed to summon the strength to reach and push the call button yourself for a couple of days.

One final note on the subject of pain... In the modern medical community they will tell you to "request" pain meds as needed. They're serious. If you try and be a tough girl and wait until it's absolutely necessary to have them, be prepared for some pain. Once pain is out of hand it's much harder to stop than if you stay on top of it keeping the pain to a low level.

Good luck with your surgery and we'll be looking forward to hearing about your experiences.

Jerry

 

[distances]

Spouse's Perspective

Spouse's Perspective

These are thoughts from my husband's experience with my surgery. Wear comfortable clothes and soft soled shoes for the lenth of time in the waiting room. Have at least one person there with you, more is better or stagger their schedule so their's someone there with you. Snacks; water ("hospital food's awful and needs to be supplemented"). Prepare yourself for the overwhelming number and surrealness of all the tubes and machines, her being very pale and being wrapped up like a cacoon and asleep. Remind yourself these are good things. Take a minute after you see her to walk down the hall alone and thank your lucky stars she's still alive. There will be bumps in the road, but the main objective is that she's still alive. Get prepared to walk, walk, walk during the recovery period.

Before surgery, be sure all your phone numbers/contacts in cell phone are up to date. Have all your business done ahead of time. You don't want to have to stop and pay bills. Whatever recovery time, figure twice as long just in case. Get a lay of the land around the hospital (get a map) in case you have to go get something, even just a bite to eat. A drug store location, location of gift store and flower shop. Purchase a heart monitor before surgery and a seat belt chest pad (Walmart/Target, or car accessories store.) Be sure to have plenty of water on hand and munchies for the drive back home. Know the driving route and any possible rest spots along the way. If possible, have someone at the house for assistance upon your arrival. Bed and bath on 1st floor. Fully stock refrig. with dr. recommended food and also just stuff she likes.

 

[Mb]

Hello!

Everyone here seems to have covered everything right after surgery, but I have a comment to make for when you get home. And, when people ask you what they could do for you....this is one thing that might make things a lot easier for both you and your husband.

Ask them to bring home cooked meals to your home. After my husband's surgery, and 11 days or so in the hospital, when we arrived home I was emotionally exhausted, and worried about him for the first couple of weeks, to the point that I didn't want to leave him alone to go to the grocery store. It would have been so nice if someone had dropped off a meal or two. I do all of the cooking in our home, and even so, it really would have been appreciated. I actually have a friend who is recovering from colon surgery right now, and has told me repeatedly it is what is appreciated most. I am not sure if I am the only spouse who felt this way. But if people want to help, this is one area that is truly helpful.

Marybeth

 

[roxdrop]

Hi! You've received many excellent replies, but I can share my experience with you as a young person whose doting mother absorbed a large portion of the shock in the role of my supporter.

When I was "waking up" in the ICU I actually didn't feel the breathing tube. I heard the voice of my family, and whenever I knew they were talking to me I would roll my head around (the rest of me was paralyzed at the time) and try to signal that I wanted the breathing tube out. But really, this was not because I felt it, I just remember thinking that it was something awful and it needed to be removed. I eventually began biting at the tube, and as soon as I regained movement in my arms I reached up to point to it. I only actually felt it inside me once, and it wasn't terrifying. I did feel them remove it but there was no pain involved and I was still very sedated. That's all I can say about the breathing tube.

According to my family I didn't look as bad as they were expecting, just puffy and a little pale. What upset my mother the most was the way the respirator puffed my torso up with each "breath," and the way I was thrashing my head to get the breathing tube out. The surgeons explained that of all my senses, hearing would come back first so I told my family ahead of time to tell me nice things as I was awakening. I remember being comforted by their voices, and that is about the best advice I can give.

Also, I thought I would be happy to have visitors in the hospital, but I found myself a little anxious and eventually cranky. Not to mention that I fell asleep during most of the visits. There were just so many (understandable) interruptions that everytime there was a knock on the door I would flinch. What was helpful for me was when my guests let me know they understood I was tired, and kept their visits short. I enjoyed having my family around, but I needed it quiet and peaceful. Sometimes the best thing was just a familiar presence in the room with me while I dozed.

Really, the whole experience was not tremendously awful, and the best thing that supporters can do is tune in to the state of the patient, and keep things low-key and positive.

Everything will go well with your surgery, and I'm sure you will have excellent support!

 

[paulk]

Sometimes the best thing was just a familiar presence in the room with me while I dozed.

This was the single most important thing to me.

-Paul

 

[punkin32180]

The Vent was my biggest fear too... its not as bad as it seems.. I woke up a couple times while in the ICU on the vent and they put me right back to sleep.. they dont want you to feel uncomfortable so they make sure you are sleeping while thats placed... Good Luck...

 

[MikeHeim]

I was more afraid of the breathing tube than anything else before surgery. I asked several questions on this site about it, and also did some research on other sites. As it turned out, I have only the faintest recollection of it being removed and no recollection of it being in and being conscious. One warning that I haven't seen is that my fiance actually left the room as the breathing tube was being removed. I guess there was a fair amount of blood and she doesn't do well with things like that at all.

That said, I won't lie and tell you I wouldn't be afraid of it if for some reason I had to have a second OHS. Reading stories from some of the other people on this site gives me the absolute willies. Fortunately, it seems like the vast majority of people have it removed when they are pretty much asleep.