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Shelley

My SO had valve replacment surgery three weeks ago. He was sick for a long time before that but the doctors continually missed what was wrong with him - probably because he is pretty young. I'm sure you all understand the shock we got 6 weeks ago when he was diagnosed.

I am just exhausted and constantly tearful but feel that beacuse he is now 'fixed' people expect me to be back to normal. I can't even take the slightest criticism without wanting to burst into tears. My other half if off work for three months but I am certainly not. I don't know how I'm going to manage everything and give him the support he needs. I am only 26 but feel about 100. I've got to the stage where I ignore phonecalls because I can't bear to talk to anyone.

I love him so much but just can't see past the current situation. I feel that this post makes me sound really selfish, but I was really glad to find this forum as I can't be the only person out there who has felt like this.
 
No, Shelley, you are not alone. You are just one of all of us. We have all been where you are, tho most of us were the patient. You are in a scary time right now and you can't see very far ahead, but there is light at the end of the tunnel, believe me. If you read around these posts, you will find that quite a few of our posters are like you - the SO. And all were worried just as you are worrying. If you need to cry, go ahead and do it. No big deal, get it out. You were surprised - some of us went to the doctor and didn't even get to go home - that's a surprise, too. We know what you are going through and we understand. You must stay in here and find out all about heart surgery. It is an awesome journey. I wish you had found us before the surgery and we could have walked right along with both of you. Believe me, your loved one is going to be fine, given time. It is a long recuperation period, but it will come to an end eventually and he will be all brand new again. In the meantime, you must take care of Shelley, too. Rest as much as you can and don't watch every move he makes. That isn't helping him nor you. YOu are bound to be wondrin what the future will be like, but aren't you happy that he is here to be part of it. Be thankful that the surgery was available for him - and for you. Welcome to vr.com. So many members - just like you. Love to you. God bless Ann
 
Hello Shelley,

Sorry to hear you are suffering from the 'shell shock' of your SO's Heart Surgery. That is NOT an uncommon reaction. It might help to talk with *your* Primary Care Physician. DEPRESSION is a common accomplice to Heart Surgery, for the patient and SO's. There are some new antidepressant medications which seem to work well. Zoloft has been mentioned by several on this site.

It may also help to read some of the personal stories and browse through the FORUMS, especially the Post Surgery Forum to see how others coped with this life saving experience. It does take time, but at 6 weeks, the worst should be over and slow but steady progress should be the pattern for the coming year.

Remember, you and your SO are NOT ALONE. Reach out and ask your questions. We've all 'been there and done that' either as a patient or supporting SO.

Best wishes,

'AL'
 
Hi Shelley and welcome aboard

You've been through the wringer as well as your SO. Things are all past the uphill climb and know going on the downhill journey. At 3 weeks, there shouldn't be a whole lot of your involvement needed. You should be starting to slowly let things get back to a more normal rhythm.

You've got to take care of yourself. If your down and he's down, the whole show is down and that's not a good thing. Cry all that you need to, but be assured things will be back to normal soon.

Without this surgery, it's unlikely that SO would be around this time next year. You have new lives now and new incites as to what you want to do and how you want to deal with life. Your both most likely looking at life a whole lot differently then before. This too is normal. No one in here will criticize the way you feel or what you've been through. We've been there and done that and we get it.

Take a deep breath, exhale slowly, calm yourself and walk among friends. ;)
 
Shelly,
Welcome. I'm so glad you found us. You'll get more support and information here than just about any place else. There are people here that have "been there, done that" which you can rely on for warm, practical advice. Sylvia and Nancy are 2 daily posters that immediately come to mind, who are in your role of the SO. I'm sure they'll be weighing in when they read your post. Take that deep breath that Ross suggested, get a cup of coffee, relax and welcome to your new group of friends.

Karlynn
 
Shelley

Shelley

First of all welcome.
I remember feeling as though we ( Hank and I ) had just been thrown into this tornado of events and then spit out again. One minute we were in the middle of all this energy and commotion. Then the surgery was over, they gave us some pain meds and those sexy white stockings and said see ya, have a nice life... Next.

We were young also ( Hank was 32, I was 30 )

I was overwhelmed too. Wanted to lock all the doors and pull down the blinds and just be with my little family. lick our wounds, so to speak. The good news is that it does get easier. sometimes now I forget it really all happened. I love those rare occasions when I can hear Hanks heart clicking. It is a sweet reminder that he is still alive and clicking.;) and that we survived.

Keep posting and just put one foot in front of the other. We are all hear for you both.
 
Welcome, Shelley. I second what the others, especially Hensylee have written. It is definitely a life-changing surgery, but those who haven't gone through it can't realize that. You and your SO will be LIVING with the reality of this surgery for a long time to come, but as you say, other people expect you to return to normal very quickly. Recovery from this surgery is rarely smooth; there are ups and downs.
I didn't find this site until several months after my surgery, and those were several lonely months. But here everyone understands. Come and share often. We've been through these very same things before.
 
Hello!

I am also a SO. My husband had dual valve surgeries, two years ago. He was a pretty sick guy for quite a while before, and after the surgery. Your story reminded me of what I went through.

I held up fairly well prior to the surgery. Unlike you, I had known since I had met my husband that he had heart damage from rheumatic fever. Then, when he was finally diagnosed with heart failure, I had to give myself a good kick and remind myself and others in our family, that we had known the day would come, and it had. So, I convinced myself I had no right to be a "scared wife". This is so much different than what you went through though, and I am in fact, much older. (51 at time of the surgery).

My daughters, thank God, were with me before, during, and for two weeks post surgery. I did not have the emotional strength to talk to people on the phone during that time. I asked one of them to make the phone calls, and bring everyone up to date. Our friends developed a "call tree", and family members ended up doing the same. My plate was SO full, taking care of him, etc. I just could NOT deal with the niceties...they just weren't important to me....my husband was. In retrospect, I an thankful for my daughters, and know I had my priorities in order. My husband came first, and then my emotional needs came second. Three weeks post surgery, I went back to work at the company we own.
Tears??? Oh yes. They would just spring up right out of nowhere. Then weeks went by, and I realized he wasn't going to die, that we would have a good life together. I had placed my trust in God to bring him through the surgery, and I continue to trust him today, to know what is best for us. I cried during Mass, for the first 6 months or so post surgery. The joke between us was to get the tissues, and the donation envelope, before we left for church. I went through the same thing at the one year anniversary, for a couple of weeks. I am SO grateful to our maker for having given me more years with my husband. I am also very grateful to his doctors, the drug companies, and to the myriad of people who assisted him on his road to recovery.

I know our lives will never be the same as they were before his surgery. He has not recovered as well as most of the folks on this site, frankly because the surgery should have been done before he went into congestive heart failure. But again, God's will, not mine. He cannot work, so I am running the company. Through God's grace, I have not, as yet, made too many big errors. And, I have lots of people helping....qualified competent people who care. So our lives together are different. We do more of what he can do , and we don;'t do what he can't do. Pretty simple!!

So, please do not feel that you are alone. And, next to your husband, take care of your own needs. Ask someone for help....like maybe your Mom or Dad. One of the things I missed the most through that time was my mother. Frankly, because I knew she would be as worried about me, as she would be about my husband. If you can, get someone to help with house work. Do take out food for dinner. Set aside a bit of time each day for yourself. It is not selfish. And, cry. It's ok. Your life changed a whole heck of alot, so you are entitled.

May God hold you in the hollow of his hand.

Marybeth
 
Hello Shelley-

Welcome to the SO club. It's a pretty special club, I know, I've been there, and been there, and been there, seems like forever! My husband Joe has had 3 valve surgeries, 2 lung surgeries, has a pacemaker, spent the entire month of January in the hospital with pulmonary hypertension, and suffers from lots of other very serious cardiac related problems. He's a medical nightmare, or a medical cash cow--depending on your perspective. LOL

Some of what you are feeling is your body's normal reaction. It's releasing all of those pent up emotions. But there are other things that go on, and maybe you can relate to what my experiences have been.

Right after his surgeries there is a very intense period when you are "on call" almost 24 hours a day, and that goes on for a long time. Your loved one may not be sleeping well, and may be up quite a bit during the night and might be in a lot of pain. Plus you are venturing into unknown territory, taking care of someone who has gone through a very serious surgery. There are no books that can prepare you for the stress this involves. And your husband's doctors won't have any time to devote to your problems. You have to try to figure this out all alone. It's pretty scary. You don't know if what you're witnessing with your SO is a normal thing for right after surgery, or is something that you should call the doctor for. In addition to that there are some doctors that do not welcome frequent calls or calls they consider to not be a problem. How can a person who has no experience decide when it is right to call or not?

All of a sudden I found that I had to shoulder not only what I used to do, but had to now take on many of the tasks that Joe would have normally done, including all of the heavy work around the house and the outside work, in addition to my new "nurse" duties. He can help to do many things now, but I still have an awful lot to do. I also interact with all of his medical care providers, and he has many of them, he also has many appointments, lab visits, etc. I go to most of them with him, because i need to know what is going on, and because i want to make very sure that all of his healthcare providers are on the same page and know what is taking place with Joe in an updated way.

We found that there were only two other people in the family that really cared or understood what was going on with Joe, our two daughters. The rest of the family--well, what can I say, some of them didn't even remember that he had had heart surgery! And they sure don't have a clue about any of the other multiple, complicated and severe conditions he has on an ongoing situation. So there is not much comfort or support there. It's pretty bad when you are all alone, out there swinging in the jungle without a safety net. Friends, forget about it. They just don't ask anymore, because they either don't understand, don't care, or really don't want to hear about these problems, it's a downer and it scares a lot of people.

On top of all of that, there is the very real emotionality of watching a loved one go through so much.

So what are some of my solutions?

The most wonderful thing is this website. It has really saved my sanity. I get as much positive feedback as I give. It is the one place I can come where everyone "gets it" without long-winded explanations. So I come here a lot. And like so many others I find it's so good to feel "connected" to ohers who know the score.

I made a concerted effort many years ago to read everything I could get my hands on about all of Joe's problems. It was hard reading at first, but the more I knew, the easier it was for me to help Joe and also to understand what he was going through, and what things are a problem and what are not. It helped so much, and I highly recommend that you do the same. Ignorance is not bliss here, you really have to understand things in depth, and continue to keep updated on new developments in the field. This site has a wealth of information. You could probably learn all you have to know by coming here often when you have a moment and reading some of the posts.

Try to remember that your loved one has been fixed up. It is important that once patients are starting to feel better, they not have someone hovering over them. You have to trust that if something is amiss, you will be summoned. I go out and go shopping. I have a cellphone and Joe knows he can reach me at any time. But those brief moments away clear my mind and refresh me. If it's a terribly stressful time, I roll up all my car windows and turn on the CDs to the highest volume and let the noise distract me. Who knows, maybe our dear teenagers have something there. Works for me.

You must always remember that this is a brief period in life, and that things will be getting better. It may take a little while, and there will be stressful times, but there will be sunshiny days ahead.

Take good care of yourself during this time. Get rest even if you have to take a nap now and then. Get away briefly, go to the store, listen to music that you love, do some of the things that you enjoy-gardening, crafts, whatever, go online, come here and vent. There's usually always someone here, even late at night.

We're all here for you, and will do our best to help you through this difficult adjustment.

Take care and take care of you, now.
 
hi shelley!
i'm so glad that you have found this place... i don't think i could ever have survived without it.
i found this site a few months before joey's surgery and read and learned as much as i possibly could. even though reading some of the personal stories were frightening to me, knowledge _to me_ was power.

we just returned from the vrcom reunion and, surprisingly, joey_ who never signs on here_ got up and spoke to everyone. he told everyone that he thought that s.o.'s play a major role in this. he has told me numerous times that
he feels my role in this whole thing has been much more difficult than his role.
he started by saying that i was up, frightened, a wreck in the waiting room while he was out during the surgery.
next, i had to run the house and see to it that our kids were ok (mentally and just squared away school and activity - wise) AND run to the hospital each day to be with him (i also liked helping to change his sheets, give him baths, etc instead of the nurses and they, and he, loved and appreciated it).
i think i must have lost 5-8 lbs just in those 4 days he was hospitalized!!!
then we came home and, ofcourse, i continued to do and do and do... the girls helped tremendously.
people wanted to visit, despite the fact that joey was exhausted and really was not ready to have too many visitors_ he woudl tire easily. so, i had to play guard - dog and nicely explain this to people (even relatives) who would sometimes get insulted or angry, would you believe???
i felt so depleted. i imagine you must be feeling that way, from the sound of you.
please try and "feed" yourself. rest, nap, take some time out for yourself, as nancy said.

it does get easier with time. please keep coming back here. you will be amazed at how wonderful and comforting it is to talk to people who truly understand and who have walked in your shoes.
if you ever need to talk, please email me at : [email protected] or if you'd like, you can call me anytime at home or on my cell phone (i'll p.m. you those numbers).
wishing you all the best. please take care of yourself.
-sylvia
 
No doubt you'll all be pleased to know that your replies made me cry :) But in a good way - I felt such relief reading your responses and realising that the way I feel is just normal. I think it's difficult for others to understand if they haven't been through a similar situation. I had begun to feel that I was getting too upset about it - after all, he is fixed!

Unfortunately, we found out today that he now has to go for a brain scan. The doctor thinks that there was a blood clot in his left arm that went to his brain and caused some damage to his left arm and eye - not exactly sure of the details yet - and that this happened some time before he was diagnosed.

Still, I'm trying to stay positive. He only has slight weakness in his left arm. I am more concerned about his eyesight but we will just have to wait and see.

Many thanks to you all for welcoming me to the site and your prompt responses. It means a lot to me.

Shelley
 
Shelley,
You're not alone. I cried with relief when I found this forum too! Keep us posted and good luck with the scan.

Karlynn
 
Oh Shelley-

I'm sorry to hear about the blood clot thing. Please let us all know what the outcome is.

You'll both be in my thoughts and prayers.
 
Shelley - as I read everyone's post, I said "I know Shelley is crying" - but all were heartfelt and meant to uplift you. Now that we know of further news about your dear one, you MUST stick in here with us. The support you receive will be of utmost importance to you and to him. Looking forward to hearing more as time passes. Love and God bless Ann
 
You hang in there

You hang in there

Shelley, I'm sorry he's having a difficult recovery. But understand that his age is a big plus - kids your age recover from everything much faster and more completely than us (I know, speak for myself :eek: ) moldier oldiers.

Echoing what everyon else said - you MUST take care of yourself, or you're no help to him. Our mantra of breathe nap walk ain't bad for you, too; other than the breathing. Lots of rest whenever possible, and good healthy exercise.

I shipped my spouse back to work about a week after surgery and preferred being alone to having him hover around. And I was SO glad to see him when he got off work!

So hang in there and stay in touch with us. We are endlessly curious about how people are doing - we all want to know about the clot, and how he's doing, and how you're doing.

And take care of YOURself, too.
 
Hi there

Still not sure what's wrong. An MRI scan was out of the question as too soon after the op. CAT scan was given but wasn't detailed enough. The neurologist thinks they is cause for concern but not worry - whatever that means! Basically if the blood clot in his arm from the infective endocarditis did travel to his brain and cause a minor stroke the damage is done and we just have to wait for the MRI.

So we'll have to wait and see. I am just thankful that it wasn't anything awful like a tumour - my mind just jumps to the worst case scenario nowadays. Major panic over, thank the Lord.

Shelley
 
hi shelley!
how are things going? how are you holding up?
is your husband home or did they keep him for observation?
please let us know as soon as you find out what is going on, ok?
we're here for you. be well, sylvia
 
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