My Boyfriend's Having AVR on Monday

[nanookyaya]

Hi everyone. I am new to this site. My name is Nathalie and my boyfriend Jim is having AVR on Monday. If any of you have read any of his posts (he posts under the name Jayaresq), you know how grateful Jim is to this website.

After Jim first met with his cardiothoracic surgeon, he came home and explained to me that he had essentially been presented with three choices: (1) a mechanical valve which posed a lesser risk of re-surgery, but a life on anticoagulants thereafter; (2) a tissue valve which would allow him to maintain his current lifestyle, but guaranteed re-surgery(s); and (3) the Ross procedure which, well, everyone on this website knows its pros and cons, so there?s no need for me to go there. Anyways, each option had its strengths and its weaknesses and seemed impossible to rank against the others, but, more importantly, each seemed scary and surreal. I couldn?t believe that my boyfriend was being forced to make such life altering decisions, let alone have open-heart surgery!

The entire situation was foreign to me, and I didn?t know what to say or do to help Jim. I am so glad that Jim found this website, because he has gained so much knowledge and strength by being able to talk to people who do know what to say and do. I have seen Jim spend several sleepless nights reading posts on this site, and cannot describe the way it touches his heart to know that people whom he has never met can be so supportive and caring of him and each other. I have been moved by your kind words to me, too.

Knowing that my love?s surgery is less than one week away has made me increasingly anxious. I want desperately to be positive, but I keep worrying about losing him. My rational mind tells me the risk is so low and that he will be better than ever in no time, but the irrational part of me sometimes overpowers the rational. I don?t want Jim to know because I want him to be surrounded by positive energy (wow, am I from California or what?), but I get so upset at the thought of not having him in my life and it?s really hard for me to hide my emotions. I am also really scared about being in the waiting room for so many hours not knowing what is happening. Jim doesn?t want me to see him in the ICU, so I guess I will be spared that experience.

Thank you all for helping Jim and for including him in your prayers. Words can?t adequately express how much it means to me to know that Jim has your support. I also just wanted to say how relieved I am that Katie is doing better and that she will be in my thoughts and prayers until she returns home. Thanks again,

Nathalie

 

[WendyD]

Hi Nathalie

Hi Nathalie

Welcome from "one significant other to another"
I know exactly how you are feeling right now.You are going to feel, very anxious and worried but trying to be brave all at the same time,and it's really exhausting !!
Take care of yourself now, so that you will have lots of energy to get you through the next few weeks of Jim's recovery.Keep us posted,let us know how things are going and keep your "chin up", we are all just an e-mail away.
Sending prayers and good wishes for Jim's surgery and take care of yourself,
Very best wishes
Wendy

 

[Gemma]

Hi Nathalie,
As Wendy says, we all know exactly where you're coming from. My boyfriend, also called Jim had his AVR in December 2003 and reading your post reminds me exactly how I felt (literally, as our boyfriends have the same name!).

Unfortunately there are no magic words to make you stop worrying, that probably won't happen until you know Jim's OK. But you've found a great group of people here who will help you through the worry.

One thing I would suggest is that if you feel you can handle it, ask Jim to reconsider allowing you into ICU to see him. I know it made me feel a whole lot better to actually see him, and he will probably be there until the day after his operation so to spare an added sleepless night, maybe talk it over with him. Apart from the initial stomach sinking through the floor feeling when you first walk through the door and see all the tubes, wires and machines, it's really not that bad. On the other hand, my Jim had all tubes, wires etc bar oxygen and one IV thing in his hand removed by the morning after his surgery, so if you both really think you can last that long, it may be better to wait. Entirely up to you .

No doubt you'll have lots of questions in the next few days - feel free to ask away and welcome to our "family".

Gemma.

 

[Old clicker]

I know when I had my AVR it was a lot harder on my wife than it was for me. I dont know what I can say to make you feel better, but it was something I wish I had never had to put her through.

 

[hensylee]

Welcome, Nathalie - Thank you for being there for Jim. He is going to need you after surgery - to bring him stuff, make him do his breathing exercises, and to keep him still at times.

As for the ICU thing, it isn't a pretty sight, so perhaps he is right. I recall one very distinct memory in ICU - my son's eyes (no face, just eyes) staring down at me and he was not happy. The ICU experience probably makes it look much worse than it is. Jim is going to be just fine - look at all the VR members, and nearly every one of our members has been there and still doing well. No doubt about it, it's major surgery, but the success rate is very, very high. Jim will climb the mountain as so many VRers have done and he will get over the top just fine.

It's good that you have come along, too, to learn what you can from VR members. There is a lot here that drs don't get to know. So read on. And when Jim goes to surgery, it is now your responsibility to check in to tell us how his surgery goes. We count on somebody from the patient's family group to keep us informed. So we need you, too.

Hang in and we are glad to know you. Blessins.....

 

[Nancy]

Hi and welcome-

My husband has had 5 thoracic surgeries, three valves and two lungs. So I've seen him recover many times.

Please keep remembering that this surgery is well perfected. The surgeons who do this are extremely competent. He will be cared for with the best team the hospital has. And his pain will be well controlled. This is a medical problem that is fixable. Years ago, people with these conditions did not survive. But after heart surgery, most return to a normal life and a normal lifespan.

As far as the ICU goes, you sound like someone who could handle it. It's reassuring to see your loved one after surgery and to know that he made it and to tell him that you love him. He will look pale and will be hooked up to all kinds of equipment, all designed to keep his body safe during those critical hours. It's not pretty, but who cares? He'll be there and at the start of his recovery mode.

Wishing you all the best. Read as much as you can. Knowledge is power.

 

[Phyllis]

Dear Nathalie,
As a wife of the patient, I know how hard it is and all the emotions you are going through. The 4-6 hour wait during surgery will be the worst. It helps if you have someone with you that you are really close to- even if they don't say a word, but are just "there". You also might want to bring a cell phone. You usually can use it in the waiting area, but not in ICU or the step down unit. I hope that you can convince Jim to let you see him in ICU. I know, it's hard to change a lawyer's mind! I've been trying to change Dick's mind about many things for 40 years now! As scary as it seems, it will be actually very reassuring to you to see him and most important, very reassuring to Jim to have you there. Dick did not remember a lot after surgery, but he did remember me being there, squeezing his hand and reassuring him that all had gone well. He mentioned it often in the following recovery weeks. We also believe here at VR.com that's it very important for a family member or significant other to be there in the hospital as much as possible to keep an eye on things and ask those questions that the patient may not be able to.
You will be fine and Jim will be better than ever in time and you both will be back here supporting others with your well-earned experience. We wish you both the best and hope that you will post as soon as you can after surgery.

 

[Karlynn]

Welcome Nathalie! I'm so glad you decided to join us too. As you can already see we have lots of caring significant others and I know that those of us that go throught the surgery would have a much harder time without you. In some ways, it's harder being the one waiting and watching as their loved one goes through the process. It's hard on those of us that have the surgery, but we feel some bit of control since we are the ones making the decisions. It's quite obvious that Jim is so grateful for your support.

While this is a serious surgery he is about to have, it is also a highly successful one. Don't hesitate to ask any questions of the doctor, or anyone else. There's no such thing as a dumb question. Ask away here too! Chances are someone will have first hand experience relating to your question.

Best wishes!

 

[Barry]

I got a mechanical St. Jude's about 4 years ago. Opted for that because once is quite enough for me, thank you, when it comes to having OHS. OHS is nearly routine these days, so I wouldn't be worrying much about whether or not he's going to make it.

As noted in previous posts, OHS can be harder on the loved ones than on the patient. This certainly was true in my case.

I don't know about your one true love, but speaking for myself, when I'm feeling lousy a short visit is nice but beyond that I generally just want to be left alone. There were a number of times that I had to remind myself that the visit was making the other person feel better, even if it was annoying me, and to at least act like I appreciated the visit (sincerity is a greatly over-rated virtue).

I found that the worst part of the whole deal was the chronic boredom and the absurd hospital gown. Three things he's likely to appreciate:
1. A bathrobe;
2. A small AM/FM radio with headphones; and
3. A couple of good books.

Some folks here suggest having a friend or family member watching the shop. Certainly someone needs to. I did it myself. My vote would be to give your lover a head's up that it would be a good idea for him to ask just what his treatment regimen is so that he can remind the nurses when they forget to do stuff (hospitals are pretty severely under-staffed these days, so the nurses get run ragged).

The drawbacks of Coumadin are, I think, over-rated. It's mostly just an annoyance, primarily the annoyance inherent to having to take any drug every day. Regarding changes in your lover's lifestyle, well, here's the ones it made to mine:
1. I've got a waterproof case on my key ring with a three-day supply of meds in it in case I get stuck somewhere. These are hard to find, BTW: Most are made for nitroglycerine pills and are too small.
2. I got rid of my motorcycle because I figured that road-rash could now be a terminal condition.
3. I no longer do heavy drinking because getting falling-down drunk could now also be a terminal condition.

 

[geebee]

Welcome Nathalie,

Having been through 3 OHS & talking to various family members, I would much rather be the patient than the visitor. As the patient, we are not waiting around (we go to sleep, we wake up - no time involved). We feel the pain but we do not see it on our faces.

That being said, you will be fine. I can tell simply by the fact that you are posting such wonderful things about Jim and your concern. You will do whatever is needed to get him, his lovely daughter and yourself through this time.

Positive energy is very important no matter where you're from. Prayer is also very important. I always say, the physical is the easy part, the emotional is what's hard after surgery. There is a lot of roller coaster rides and you must have a thick skin and the ability to cry, hug, hold and sometimes walk away. Another California thing - Jim may just need some space now and then to be with his own thoughts.

Jim will be fine. The surgeon will make the ultimate valve decision once he is in there. He is just looking for preferences but they don't always pan out. The chances of problems are so very slim that you should be concerned about helping him through recovery and not about losing him. Easy to say, I know, but true nonetheless.

Stay in touch and we will get you all through this.

 

[Fburns]

Welcome Nathalie,

Can I offer one further comment to the great advice being offered....

I had AVR in 1999, and I genuinely did not find the experience too bad. The day itself was a "piece of cake"; it was all over before I realised it. Post surgery, I experienced very little pain or real discomfiture, and didn't have any issues with tubes etc. However, the worst part for me was the days afterwards. I remember being very anxious and worried. I was not thinking logically and was terrified of so much. I would suggest maybe that's a role a partner can play; re-assurance. Reminding the patient that this is temporary and things will improve (and improve quickly) ; that he/she is surrounded by professionals who have been through this many times, and re-assuring that recovery is on its way.

Good luck to both.

Frank

 

[nanookyaya]

Thank you all for the great advice.

 

[Ross]

.......and if he won't listen to you, Bar him!

 

[gadgetman]

Nathalie,

Welcome to ValveReplacement.com. As I've said before (and will probably repeat) we forget that our loved ones are facing as many challenges and worries (if not MORE) as we are. We get to sleep (WE HOPE) through the worst part. Our room and board is taken care of.

We don't have to sleep in that most uncomfortable waiting room chair (we get a very adjustable bed--and we still can't find a comfortable position).

We don't have to go out and find something to eat at the strangest hours (our's is brought to us--sometimes thru a tube ).

We don't have to wait what must seem like days (only a few hours) while we are being operated on (AGAIN SLEEPING THROUGH IT).

We don't have to worry about what we look like in ICU (no mirrors in that place--thank God). Unfortunately my wife did take pictures of me which I posted elsewhere.

We don't have to act as watchman (or woman) while the overworked staff tend to our needs along with a couple of dozen others (we usually can't say NO to anything they hand or poke at us--every 2 seconds ).

We need someone to MAKE us get up and walk when we have just found the best position in bed/recliner.

We need someone to MAKE us suck a 2 ton ball (I know Al--you loved it) in that little plastic torture chamber.

We need someone to wait on us hand and foot even when we get to the point of being able to do it ourselves .

We need someone to quickly hand us that pillow when we have a cough (or dreaded sneeze) coming on.

And other items I'm sure others can add.

Anyway, as you've already found out there are a lot of significant others here who can better help you get through your part in this climb. Please post any questions, concerns, and sometimes anger you may experience. We are here to help if we can or to just offer a shoulder.

Good Luck to both of you as you face this together and,

May God Bless,

Danny

 

[countryboy]

MY Thoughts

MY Thoughts

I would get your boyfriend to reconsider on the ICU visits. He will be very glad to see your face whether you are crying or not. My wife said I looked pale but she was very glad to see my THUMBS UP sign. He may not remember much of the ICU--my memory of that is still fuzzy.
I had a good experience, if you can call OHS good. I was in ICU by noon, vent removed by 4:00 pm, and felt like I drank 50 gallons of water soon after. I had lunch in my room the next day and walked the halls some. He will tire very quickly and there is no reserve strength for a while. I never had any pain just levels of discomfort--no pain meds after leaving hospital 5 days later. The 2 hour ride home kicked my butt--worn out and ready to rest.
Try to have a good friend or someone with you, as someone said to JUST BE THERE WITH YOU.

Wishing the best,
God Bless,
Bobby

 

[Mary]

I was totally out of it in ICU. My family came in right after I got out of surgery, and I was completely zonked. I was like that most of the night, and never really woke up until 6 the next morning. ICU visiting hours didn't start until 10 am, so I didn't see my husband until I was being moved.

It made me no difference at all. I told everyone that the ICU visit was their decision to make. It made me no difference either way.

The only person who never came to the hospital was our youngest son. It's probable that he will undergo a valve replacement himself one day, and I suppose my experience just hit too close to home. I was secretly relieved.

What occurs after initial surgery seems to be the most important time to think about how you can help Jim. I would wait and follow his lead on what he needs and wants you to do.

 

[momshell7]

Welcom Nathalie!!

Welcom Nathalie!!

Hello and welcome to the family.

My husband had his aortic valve replace last October. He got a porcine tissue valve. I had about six months to worry about it. I am happy to say that the day of surgery was much easier that I ever thought it would be. The surgery was supposed to be 8 hours and lasted only 3.

I would also try to get your boyfriend to reconsidered letting you see him in the ICU. I was only allowed to be in there for a few minutes but it really helped me to see the monitor that showed a heartbeat. Just seeing that made me cry because I was so happy to see he was still alive. He wasn't nearly as scary looking as I was expecting either. He had really good color. I was warned that he would look blue or really pale, like he was dead because of his body being cooled. Luckily, they didn't have to cool him down as much as expected so he kept his color.

I will keep you and you boyfriend in my prayers. I know the waiting is the hardest part.

Please keep us posted on Monday or as soon as you can. We will be anxiously awaiting the good news.


Michelle

 

[WendyD]

Hi there Nathalie,
Well the day is almost here !!
Regarding whether or not to go and see Jim in ICU, it would be easier on you to be able to see him & know that he is alright, when Ernie had his op his first memory after the op in ICU was when he "came to " and squeezed my hand. We were both so relieved to see each other again! The waiting was the worst. I had a friend with me plus my son & daughter , the op took less time than anticipated, 3 hrs instead of 4, he was in ICU from 2pm then moved into another ward the next day.
Either way, the most important thing is that he is the best hands and that we all wish him the very best for his surgery and look after yourself too !!
Let us know how things are going.
Very best wishes and tell Jim "Hamba Gahle" - an african saying which means "travel safely" and we will see you on the other side of the mountain!!
Ernie & Wendy

 

[TjCarpenter]

Hi there Nathalie,
Well the day is almost here !!
Regarding whether or not to go and see Jim in ICU, it would be easier on you to be able to see him & know that he is alright, when Ernie had his op his first memory after the op in ICU was when he "came to " and squeezed my hand. We were both so relieved to see each other again! The waiting was the worst. I had a friend with me plus my son & daughter , the op took less time than anticipated, 3 hrs instead of 4, he was in ICU from 2pm then moved into another ward the next day.
Either way, the most important thing is that he is the best hands and that we all wish him the very best for his surgery and look after yourself too !!
Let us know how things are going.
Very best wishes and tell Jim "Hamba Gahle" - an african saying which means "travel safely" and we will see you on the other side of the mountain!!
Ernie & Wendy

Hello Nathalie,

I do not know anything about your spirituality so please take no offense to my advice if it does not fit into your life. The best course to take in my view is one of acceptance, faith and temperance or patience. First, acceptance. There must come a point for all of us when we realize that this is not a dream or nightmare but another real day in our lives. At that point I decided to "Let go... and let God". I knew that I was in the best of hands and gained an immediate sense of peace and well being. That was the acceptance and faith working together. Temperance and patience in as much as I knew I needed to pace myself physically and emotionally to get through this long journey. Like a marathon runner, I was careful not to burn out too quickly and I dealt only with the challenges at hand, ( I ate the elephant one bite at a time ). This gave me the endurance I needed for the long haul. My wife, used the same formula to cope with her support role. By letting go of things that she could not change, she had more energy to deal with the things she could change and to be there for me ( which she was!). I do not know if any of this will help you, jsyt know that we will be thinking of you and praying for your success in this event. It will pass soon and you will be able to get on with your lives... I promise!

Best of luck,

Tom

 

[Debrinha GT]

The member from Brazil

The member from Brazil

Hi there Nathalie, I've been having heart surgeries since I was ten(three so far) and one thing I can tell you for sure is that seeing a familiar face while in ICU makes all the difference! You feel so helpless there and emotionally unstable that when you finally see someone you love, somehow you regain stength to do what has to be done. If it had been up to me, Mu mum, husband and best friend would have moved in there with me, if you get what I mean. One of the things you'll have to be prepared for even though it doesn't happen to everyone, is that he might experience some post-surgery depression which might make him a bit moody at times. But that too shouldn't last and if by any chance he becomes a bit stubborn when it comes to following doctors orders, be hard on him and if necessary, treat him like you would with a child. What I've noticed about myself is that whenever I'm anxious about something, or afraid, I feel the need to chat away to whoever is around so that time will pass quicker and to get my mind off the problems for a while. That's what helps me but again, people are different and I'm sure you'll find something that will relax you while waiting for news. Please, let us know how things went for Jim as soon as you get a chance and feel up to it. Take care.
Débora