Re-opening wounds (psychologically)

[Michelle D]

The surgery itself wasn't too traumatic for me but some aspects of post-op were. Three weeks after surgery I was re-admitted for a-fib, then at 5 weeks Dresslers, then in the past week (3 months post-op) I took three trips to the ER. I was having severe pain the first time, high fever the second, and more pain with a crazy heart rhthym the third. Each time it took over 30 minutes for them to get an IV. My arms are covered in bruises. My d-dimer was was high but couldn't get a large enough guage IV to do a CT so they were lighted in thei search for blood clots. They made no mention of my new scary feeling arrhythmia. So I feel re-traumatized. Yes I have a structurally sound heart but electrically... That is questionable. Ive been sobbing all week. Each think I have a bump in the road it's like I have to start over and things are even more difficult for me emotionally. Yes I'm seeing a counselor.

I know most of you haven't dealt with emotional issues as tough as mine though some of you have been through so much worse physically. I just can't stop crying and want to know if I'll ever feel safe and whole again?

 

[Eva]

Michelle,

I am so sorry about all what you have been going through and I am sending hugs and positive hugs to you hoping you stay strong until this phase passes away, as it will.

I personally struggled emotionally after three months of the surgery and was so confused of what was going on. But here I am now and all is behind me.

Hang in there.

 

[Marguerite53]

Hi Michelle. I'm so sorry that you are having such a rough time. I know these are horrible days and I know that all of us here would stop in and give you a huge hug and a nice warm bowl of chicken soup or something!!! Really!! You know we would!! It IS very scary! It IS very disheartening! Even if many of us haven't had all the same things go wrong, or have had things not as serious, we still did have something, some glitch, some scare, some worry, some reason to feel so alone and tired of it all.

Try to stay strong. That's why you're feeling so beat up. You are tired of being strong. But you can be strong. You know you can. So you have to call on that strength to get you through this last round of problems. There are people everywhere with seemingly insurmountable problems yet they handle them with grace and tolerance. Sometimes we have to look to those people to try to imagine how they can be so incredibly strong. Sometimes just their being out there can be a help. I hope you can think of some people like that and try to lean on them, learn from their choices.

Florida is just too damn far from Oregon! I can't stop by with the leftover crab cakes and butterscotch brownies I have from my little dinner party tonight. I would if I could, though!! Can you treat yourself to something yummy? Or a new record, or rent a funny movie? Well. Just a thought. Something that you like, for you.

Hang in there!

Marguerite

 

[Michelle D]

I have never felt so fragile in my life. I was always very tough but that is no more. Each time I look at my bruised up arms I cry. Last night I cried so hard I started hyperventilating. I know it's not abuse but I feel like I've been abused by the only people that can help me. I go to the hospital for answers and solutions but come out with seven more holes in my arms, more pills will nasty side effects and more questions than answers. But like a beaten dog I go back because I don't feel like I can keep living without them.
I slept one hour last night. My PVCs are so frequent and strong that I felt I was being punched in the back of the head each time. I was supposed to go take a midterm at school today but I can't go. I have lost my drive. I've lost myself.

 

[nngbwh]

Hi Michelle. I am so sorry to hear you are going through some rough time. I really don't know what to tell you expect hang in there. Have
faith and patience. Don't give up. Take care.

 

[bigsidster]

Michelle----it is normal for a young (27) person to feel as you do.You have a full life ahead of you and you want to get at it.Surely you will get over these bumps in the road and be coaching others here on this forum as to your experiences and triumphs.Hope to hear GOOD news from you in the weeks to come.

 

[Michelle D]

Thanks. How much more time will I feel this way?

 

[Greg a]

My dad used to say "you are only as sick as you allow yourself to feel" BUT you have indeed had a tough journey and by facing it strongly you can take pride in how you handle it and not letting it handle you ....not to be too condisending BUT I still look back at my travels on the road and see too many turns that could have gone wrong and so no matter the aches and pains (and my chest has many) I am just so glad to be alive ....you have heard me say it before ....I am just glad to have met my second grand daughter and my new daughter in law LIFE IS GOOD :thumbup:

 

[Michelle D]

I think part of what seems to make it more difficult is my age. I do have as many life experiences to go back to as reference points of who I am. I don't have a long career, children, or any kind of legacy to help me through this. I have the best husband in the world and I'm a grad student. Thats what came out of this whole. I've lost friends, interests, some of my self-esteem and strength. I want to climb out of this hole but I don't know what to start doing to make myself feel like me again.

 

[Jkm7]

You've been through so much and it's understandable you'd have these feelings.
Sometimes the best therapy for ourselves is to stop concentrating on only ourselves and look around us at others we can help. If all we do is focus on what we suffer, our obstacles and challenges may become too high a mountain to climb.

Of course, a newly operated on heart patient has every reason for needing TLC and self absorption is reasonable and expected for a certain length of time but best way out of it may be through someone else's needs and ways to help them.

I don't in any way mean this to be critical but only as something to think about. Hopefully the counselor you are seeing can/will help you through. If they are not and you feel you are not progressing, perhaps that is not the best therapist/counselor for you.
You most definitely have my best wishes.

 

[Ruth]

It is all OK

It is all OK

Take a deep breath, exhale, and try to relax a bit.

It has been only 3 months. I get it, I had a rough recovery too. At 3 months out I still felt pretty crummy and it bummed me out. BUT, it turned out I had set unrealistic expectations for my recovery. How you feel at 3 months is not how you are likely to feel forever. Recovery is a road that can come with many bumps and each one can leave us feeling traumatized.

We are fortunate to live in a time and place where talented surgeons can save our lives. Still, we sometimes have to face down disturbing heart rhythms and depression (both more common in MV patients) as well as feel like a pincushion after repeated tests, that just add more trauma.

It is what it is. It's a journey but not a destination. To make the journey as pleasant as possible, try to spend some extra time and energy on doing things you enjoy. Treat yourself when you can. Resist the urge to draw sweeping conclusions about how you'll feel for the rest of your life.

It's all OK. I did NOT like not being the most capable person in my family nor did I like being helped. My self esteem took an unexpected and unnecessary hit. Yet, my family and friends were all supportive and understanding while I was my own toughest judge.

My heart goes out to you. I wish I could drive some of Marguerite's crab cakes down there myself.

I wish you all the best in your continuing recovery.

 

[Michelle D]

Is it true mv patients are more likely to have depression? I wonder why that is, maybe because the arrhythmias. I think without the 30,000 PVCs a day I might be able to tolerate everything else a little better.

Everything each of you says makes sense to me. I hope I can find peace, perhaps if I stop trying so hard I will be less disappointed with each bump in the road and I'll stop focusing on my suffering.

 

[Praline]

Hello Michelle,
I am so sorry that you feel so bad. It is depressing and scary when one feels so sick. Most of us had bumps after our OHS. Mine started before I even left the hospital. About 3 days after surgery I had a ventricular standstill which earned me 5 more days in ICU on a temporary pacemaker. It took 4 days for my heart to get back in sinus rhythm. Then about 2 months later I had Atrial Flutter with my heart beat at 150. But it eventually all resolved.

What does your cardiologist say about your arrhythmias? If he/she cannot do anything to make you feel better, I would ask to be referred to an arrhythmia specialist. That is what my cardiologist did, refer me to an electrophysiologist. They are the best doctors to deal with arrhythmias. I would insist on a referral.

I sure hope you get to feel better soon. I will be thinking about you.
Praline

 

[Michelle D]

My cardiologist wants me to see an EP down at the Cleveland Clinic in Weston Florida. I will go soon.

Today as part of therapy for myself I'm typing my heart story. It on page three which is week 2 and it is cathartic. It's also helping me put things in perspective and showing me things that ive been avoiding that are probably holding me up in my acceptance of all of this. I have made it a long way from those days of shuffling down the halls for my ice chips.

 

[Penny]

Hi Michelle
Great advice from everyone so far. We all have had our mountains to climb, some not so high and some like ours. I know sweetie how damn difficult it is when you have to keep going back to the hospitals where you know once again they are going to stick you with yet another iv... not fun, I have been there one too many times myself. I found for myself, I kept reminding myself of those other poor unfortunate souls I saw while I was back in the hospital. I walked up and down those halls for that week and made myself look at the bed ridden patients and thought to myself, you could be them. I cried too...wondering why it was I that got the infection while so many others had a much easier recovery... and as I was crying in the hospital, the patient beside me had his doctor come in and tell him he was going to die. I had to get up and leave the room.
I think if we spend too much time dwelling on the negative, then that's all we will see. I am glad you are typing your heart story. Sometimes that is the best way to release the negative energy. Just try to remember... your recovery is just going to take a little longer than normal. Allow yourself some patience, and remember to give yourself some reassurance that it is ok when you have those moments of panic....it is within you to find that strength that will allow you to move forward in this.. take care.. send me a msg if you need to chat..
hugs!

 

[Michelle D]

Thank you Penny. I know you've had a struggle. I think I get most distressed when I stop looking at the big picture, I am lucky that it is not worse. I am getting better and I will get past this. I will pm you when I need a chat. I'm feeling okay right now since my husband dragged me out of the house to buy a new desk. I'm hoping by Christmas I'll build myself back up to where I can enjoy myself and have a day without crying.

 

[Jkm7]

It helped me get through the times when tears seemed a 'good option' was to think how much my DH had been through. It helped me to not only think of me but to realize how deeply my tears would keep stinging him. How much could or would I ask of him? When was it time to say, 'get on with it' and do what I had to do and just plain deal with it and do all in my power to get as well as I could as fast as I could. He (We - I) went through two OHS in four years and all of us here know that isn't easy. How lucky were we that I had the opportunity to receive miraculous treatment of that sort? The more I thought of others, the easier it became for me. NOT to say I didn't have my share of 'why me parties'.

 

[Marguerite53]

I hope each day is getting better, Michelle. At your age, you are still very much in the questioning stage of life. How will this go, what does this mean, how can this person help me, who am I supposed to be, where am I supposed to live....... OMG -- endless seeking of answers.... I always tell my children (28,26 and 23) you couldn't pay me to go back to my 20's!!!! There's just too much unanswered yet just within your grasp kind of stuff hovering around your day to day life. It's a tumultuous era. So for us to say to you, hey, don't think about it, don't question it, just accept it; these are ideas that are not within your emotional framework during this time in your life. So we are asking you to bridge a gap.... an age gap. We are asking you to see into your 40's when, as you said (which was incredibly wise and mature, btw), you will have a legacy of sorts, experiences past that you can connect to....more reference points. So how can you do this? I'm beginning to think that we are asking you to do something you can't really. So... Can we ask you to believe? I know it's rather a trite saying, plastered (especially at holiday time on hot cocoa mugs) on all kinds of things, but I wonder if that is the word, the action that you need to attach yourself to. I like how Ruth said that this is the journey, not the destination. So believe us. Just believe us. If you can relax then perhaps the stress will alleviate inside your head and your body will get the okay to heal up. So just believe.

??

Best wishes and more hugs.

Marguerite

 

[Michelle D]

Marguerite, you get it. I have had successes in my life, I have experienced quite a bit for my age but not enough to have something to turn to right now. I wish more than anything I had a hobby or a social obligation. I'm going to school but my brain isn't right yet, I'm sure it partially has something to do with medications. I think that is extremely frustrating, I have always put all my money on my smarts but I feel like such an airhead since my surgery. Anyways my husband is distracting me with his reactions to the football game and I can't focus on what I'm writing.

 

[Kathy McCain]

Michelle,

I can relate to how you are feeling. My post-op complications were a bit different, but emotionally I was a basket case. It took me awhile to feel "normal" again. I don't believe that anyone is EXACTLY the same again after AVR. How could you be? Please trust me when I say that no matter how dark it may seem right now, it DOES get better! You are young, and you have many life experiences to look forward to. Please focus on the GOOD in your life! I think keeping a journal is an EXCELLENT idea. That will definitely help you sort out your emotions.

Please remember...you are much STRONGER than you know.

Take care