Feeling crummy...

[Gnusgal]

Hey, all. I just really felt like writing. I'm not feeling real great today. I'm finally getting over being sick (URI), but have been having headaches for the past several days. I mostly attribute that to the fact that I teach middle schoolers, but I know that can't be all it is, since it isn't something that happens all the time. I've got a headache right now, and it didn't start until I'd gotten home. And right when I got home a strange thing happened. I reached for my stuff as I was getting out of the car and my ring finger and pinky went numb. It had been fine while I was driving, but suddenly felt very tingly like it was trying to wake up from being asleep. It still feels a little funny, but it's mostly back to normal. This happened another time about a month ago and when I talked to my card about it she said it was probably just a pinched nerve in my arm or something.

Another thing contributing to my feeling crummy is that I'm feeling very frustrated with my mechanical valve. It clicks WAY loud a lot of the time. I expect to hear it when I'm trying to get to sleep, or when it's quiet in the room, but today I could hear it in the car, with the radio going! And my INR levels are very frustrating, but I know will never be stable because of the doctors managing it (but I have to wait for my ProTime machine until I get my new insurance card, which I had hoped to have by now). I'm just really hating that I had this surgery right now. I know many of you say that you felt so much better after yours, but I don't feel any different. And that's the most frustrating of all. I'm not a vain person, and already had a scar from previous open heart surgery, but seeing the bright red scar in the mirror is frustrating because it feels like the only thing this surgery has done is make my life more complicated. I know I needed the surgery, but I also know that having the surgery is not going to make my heart "all better." I will continue to have problems and surgeries, and there is NOTHING I can do about it. This surgery was essentially to put off transplant a little longer, but I'm almost at the point where I'd rather just get the transplant over with if it's going to be inevitable anyway. Why waste our time with all these other surgeries?

I'm sorry, I'm just down in the dumps today. I know a lot of it can be contributed to post-surgery depression, but it's still hard. I just needed to vent a bit. Thanks for being here.

 

[Nancy]

Hi Niki-

You have surely been through a lifetime of medical problems and procedures. Things can feel so hopeless sometimes. I have watched my husband go through procedure after procedure after procedure, and some really very terrible medical problems in between, even several near death experiences. We don't know too many (if any) people in our daily lives who've had as many things to cope with. That's exactly what keeps me coming back to this wonderful site. People here have had similar problems and they understand the frustration with a depth that you can't find anywhere else. I hope you will use it to help you, it's helped me.

Sometimes you wonder if it will ever come to a point that you can start to anticipate pleasant things instead of just living through the next week, day or moment. And every symptom becomes a big question mark. Will it go away, or will it develop into something else. My husband's PCP has to keep reminding me that Joe can also come down with ordinary things that have nothing to do with his heart.

But eventually there will be peace in your life, you will learn to ignore your noisy valve and perhaps even make friends with it because it means life to you. Your Coumadin levels will be managed better, either by you, another more knowlegeable doctor or your present doctor will learn to do it better.

In your daily living, you have many wonderful opportunities to help young people by showing them a path through life, maybe inspiring them in a career choice. Teaching is a wonderful thing. We all can remember the ones who helped us along the way. It leaves an indelible mark on our souls. Maybe one will become a doctor or nurse because of your influence.

I don't have any magic words for you, only that time is your ally and I know that there will be many wonderful experiences in your life to come. You will get there, we all will. Healing takes time, adjustments take time. Getting used to things take time.

Just don't give up, don't EVER give. You don't know what may be around that corner.

Take care and be well.

 

[wlaldridge]

I wish I had the kind of words Nancy has, I can only tell you to vent away. We are pulling for you and can not know totally what it must be like.

I was feeling something very emotional in the hospital after my surgery. This old gentleman came in and said "you will get through this and what ever comes next. I am 91 years old and have had this thing twice. And I'm here to tell you, you will be OK."

He was from Mended Hearts and told me to call him and join him helping others get through these things.. I was persuaded that he knew what he spoke.

I hope someone's words will do the same for you. I know you have a lot to contribute and you will find the strength to get past this. Til then VENT all you need to.

Best wishes

Bill

 

[ALCapshaw]

Niki,

When was your last surgery?

I've noticed a 'tingling' along one arm (or the other) on a few occassions following my AVR. Most of the time, I suspect pressure on the back of my shoulders from either slouching in my computer chair or laying on my back in bed, pinching off an artery to one of my arms. Sometimes I don't know what causes it, but it goes away if I get up and walk around for a few minutes.

Hope you get to feeling better. Cheers !

'AL' (CABG and AVR)

 

[John Cochran]

Dear Niki,
I can sympathize greatly with you. Today my son Clay (about your age) had his fourth ablation for arythmias. He had valve surgery last December, then a pacemaker/ICD. Shortly after he came home, late one night another arythmia kicked in, and his heart was getting shocked every 30 seconds. When the ambulance came, things got very tense once again on the way to the hospital.

Interrupting Clay's ongoing heart ordeal was my own heart surgery in June to replace my bicuspid aortic valve. Multiple problems during surgery brought me near death, and my family was told that it was unlikely I'd survive. The next week was a nightmare of some fairly horrid procedures, and a lot of emotional trauma for my family.

Some where along this journey I had a bit of a revelation. Every day, just driving down a two-lane highway brings one within a few feet of instant death. Everyday, people have unexpected strokes, heart attacks, accidents and injuries from natural disasters. Much of life--and death--is totally out of our control. However, here we are, living our lives, and the one thing we can control is how we interpret our individual situations. The scar I see in the mirror has become a symbol of life for me, a testament to man's amazing progress in healing. We can choose to embrace life and the many joys it presents. We don't have to like the hands we were dealt, but that doesn't mean we can't enjoy the game.

There are no words that can make any of us "right" again, but we can rise to the challenge everyday of finding joy, of pursuing our dreams, treasuring our friends and family, and finding ways to make others' lives perhaps a little more bearable.

The people here have all been forced to face their own mortality; the veils of invulnerability are all shed. We deal with hard issues, and for some, many long battles have been faced, with more ahead. We here are all warriors. But the enemies we battle sometimes include our own attitudes, our "why me" demons, and the depression that so often accompanies our ordeals.

All I can offer is the idea that we can face our battles with a warrior's heart, that we can be victorious in living meaningful and joyful lives, and that we can join hands in helping each other get through the tough times, and sharing those tidbits of knowledge, insight and wisdom that makes the journey easier.

Best to you,
--John

 

[EVELYN]

Hi Niki

It's 4:40 in the morning here in NY, and as I read your post and the responses, I thought to my self, "WOW, what a wonderful, insightful group of people we have on this site." Sometimes I think fate brings people together to share their stories, other times, maybe just dumb luck. Whatever the reason, please know that you have many people thinking of and caring about you.....and many people who can help you get through this. It certainly sounds as though you've been through quite a bit---you remind me of Nicole on this site who has been through it all, too and is your age.

Not being the one having gone through the surgery myself, but my husband, I know just how much I've come to value life itself. I look at Tyce's surgery as a gift from God, and another chance to make our lives and those around us better. Personally, I love to hear his valve clicking....it signifies the steadiness of the common, everyday routine, which as you know is a blessing after surgery. It tells me to never ever again take anything for granted, and to live each moment to the max.

I wish for you the very best and know you will get through this time in your life and move on.

Evelyn

PS....as a newly retired high school teacher (34 years) I can't ever imagine teaching "middle school" I truly believe you deserve combat pay!!! YOU DEFINITELY WILL BE BLESSED!!!

 

[Granbonny]

Hi Niki

Hi Niki

I picked up my age 10 Grandson from school yesterday. We had stopped and gotten his class a Pumpkin. First time in many a year, My hubby and I walked down the hallway of a school. You could hear a pin drop. The children looked so happy doing their work and when we entered his room..what a lot of little smiles. My daughter-in-law teaches in the middle school. My. how they must change for she is very tired and irriable when she gets home.. I turn on a fan at night and seems to help if I wake up...and hear my valve clicking. I am 6 months post-op and my hands fall asleep if I have them under me at night, ect...My paperwork from hospital mentioned the pinky and ring finger tingling..but will go away.Just vent all you wanna. That's what we are here for..Bonnie

 

[hensylee]

Mornin, Nikki - It is so hard for us who are old (er) to hear about such misery from young ones such as you and Nicole. You still have your whole lives ahead of you and it must be pretty scary to wonder what's ahead. But you should not do that - we who are old (er) know by now that we must live only for today and enjoy it to the fullest. We have been to the edge and come back. Some, like Ross, went to edge and had to fight to get back, but he's here with us still. We have been given a new lease and it is ours to do with what we will. When you are down hearted, please come here to tell us how you feel and there is always someone who can put that magic touch into a post to help you out. It is much better to do this than to deal with it all by yourself. Dealing alone is the worst - don't do it when there's someone to talk to.

We have a member who has had a transplant, and she is doing very well. Take care of yourself and I pray you will soon be feeling better. God bless, young'un.

 

[Gnusgal]

Thank you.

Thank you.

Thank you all for your replies. I want to start off by saying that I'm not often in these moods, but when they strike, they strike hard. I haven't been around this site long, but I have another support group (for adults with congenital heart defects) and have learned to be proud of my battle scars and be thankful the docs can do anything at all for me. For my situation, it's all a guessing game. The docs don't know what will happen if they do this or that because my anatomy is so rare. Instead of proceeding "by the book" I'm helping to write "the book". I'm normally a very strong person when it comes to dealing with the scary world of heart problems. I am open about it, and even my students know I am "strange" on the inside (they are most fascinated by the fact that all my organs are on the oposite side of "normal"). I have always said that if I had a chance to change the fact that I have heart defects I wouldn't, because it would mean I would be a different person. My heart defects have shaped a lot of who I have become. I'm a theatre teacher, and I know that wouldn't have happened had I been able to take PE in school (I got an extra elective, theatre, instead). I love to read, which may not have been the case if I'd been able to run around and play outside the way my friends could. I feel I am a more compassionate person because of what I have been through. And I know that I have helped others as they go through the trials and tribulations of being a heart patient. As a matter of fact, I have a student right now who has heart defects and just letting her know that I knew what she was going through because I was just like her at her age makes her feel better. When I was sick two weeks ago, upon my return her face lit up and she ran to hug me. That's a good feeling...

I know how important my sticking around is, and I know the docs are doing the best they know how to do in my situation. Every now and then, though it gets overwhelming and I have to just get it out. It's easier to let it out with my support groups online than it is to let it out with my husband, for some reason. Not that he wouldn't understand (and I DO talk to him about it) but I know that he is going through all this WITH me, and at times must feel the same frustration. How he handles it, I'm not sure. I've told him about this site and others in case he feels the need for some someone to talk to, but so far he hasn't had a desire to seek that avenue of support. He is such a wonderful person for taking me on, knowing well in advance what we'd be facing throughout our marriage and that our own children were most likely out of the rhelm of possibility. I truely am blessed.

Anyway, I'm going on and on again. That wasn't my intention. I just wanted to say thank you for your kind words. You hardly know me (yet) and still you have made me a part of the family with no hesitation. That is what makes this site so wonderful.

 

[sylviayasgur]

hi niki!
what wise wishes all who preceded me had to offer!
i am so sorry for your upset. i realize this is part of the "package", but i can understand and sympathize with you_ it is still difficult.
i feel, as you said, that things do happen for a reason and you have become what/who you are as a result of what life has dealt you. i must tell you that from reading your posts, you are an amazingly mature and sensitive person for your young years.
i have this theory....many of us have, what i have come to call, "tests" that i feel God puts us through.
these "tests" of strength, in the end,are what makes some of us better and nicer people. i have found in my own lifetime that it is the most painful and difficult experiences that have made me the better person i am today.
(please understand that i'm not trying to put a positive spin on this and minimize your difficulties.)

we are all here for you and for each other. anytime you need to vent or just chat, we're here.

hope you feel better.
best wishes, sylvia

 

[Kevin M]

Keep your chin up Niki.
As you know more than most of us, these feelings are normal and they come and go.

It's healthy to talk about it.

I find one of the most valuable things about this forum is being able to 'talk' to others who have gone through similar experiences. I love my wife dearly, but she cannot understand what it is to go through this. The raging emotions, odd feelings of not belonging or being abnormal, etc. It's tough to understand unless you've gone through it yourself. Some people get it, like Nancy, who has been very close to these experiences over a long period of time - the most of our spouses and friends can't see underneath that layer of trying to get through the day when we feel upset.

I know I speak for many in that you should feel free to vent like crazy as you need to. That human touch, although it's through the net, is important.

I sympathize with your situation, since it is obviously more serious than anything I've had to go through.

All I can say is to keep writing when you feel down - and keep smiling when you feel up.

We're here to help and we're all with you.
Kev

 

[Gnusgal]

Hey, Al

Hey, Al

Sorry I forgot to post a reply to your question about when my last surgery was. It was 3 months ago. The one before that was five months ago. And before that Four and a half years ago. I won't keep going. It would take awhile. If you notice, on the poll of how many surgeries people have had, so far I have the most. I'm not sure I like holding that record. But I know I'm lucky to have been born when these surgeries had been developed and could keep me clicking away (quite literally, now). I've had a total of seven heart surgeries, and then my gall bladder (which the docs attribute to my heart, simply because they could find no other reason) and my tonsils when I was little. My first surgery was when I was five years old. A shunt to improve the flow of blood to my lungs because my oxygen saturation was very low (I was turning blue).

Anyway, that was more info than you asked for, but I have a tendancy to be long winded.

Just so everyone knows, I'm starting to feel better. Fortunately I don't let these slumps get me down for long. There's no point. No sense crying over something that can't be changed...

Thanks to you all,

 

[Gnusgal]

By the way...

By the way...

Kevin, I love the picture you have under your name (can't remember what they are called). It reminds me of a book they gave me in the hospital after my surgery in June. It's a book on sexual relations after open heart surgery. (hee hee) It was very odd for me, as this is the first major surgery I've had since being married, thus the first time it was addressed. The funniest part is that I was at a children's hospital (because of my "difficult" anatomy). The pictures inside were so funny. Cartoon-y male and female hearts, gazing into each others eyes.... Cracked my hubby, mother, and me up!

 

[JimL]

Niki, you wrote, "I have a tendancy to be long winded. " That is definitely a good thing, something I treasure each day, after being so short winded before surgery....
I went to a presentation my cardiologist gave this past summer on sex and the heart patient. The best part was that his wife was also present, and she is also a cardiologist. They played off each other quite well. He seemed to want to talk about heart questions, and she was in the background, interrupting every once in a while to say something to the effect, I thought we were supposed to talk about sex...
I think I was the only non-CABG patient there.

 

[Kevin M]

I think I got that same book after my first surgery.
The pictures were all tacky and cartoony.
I still have it somewhere because I kept all that stuff.

I'm so glad you are feeling better.

It doesn't take much to feel poopy when you go through this stuff.

 

[John Cochran]

Hey, at least you guys got a book! The topic was never raised by my docs or the staff while I was in the hospital, and I was in no shape to ask. I think just for fun I'll call my surgeon's office and ask them, "Gee, no one said anything to me in the hospital, but it's been 4 months since my surgery...would it be OK to have sex yet?"

 

[Gnusgal]

Feeling okay...

Feeling okay...

I'm feeling alright emotionally today. But something happen physically that I've already called my card about. First of all, I've been noticing the past couple of weeks that in the mornings (not the afternoons, strangely) I've been VERY short of breath. I feel like I can barely make it from the parking lot into the school. As it is, I have to walk very slowly to feel like I can make it. And it's very difficult to go up the stairs to put my food in the fridge in the teacher's lounge. Once the day has picked up, I'm usually okay and don't have any problems walking from one side of the building to the other. Anyone experience this before?

Also, and this is what I was really calling my card about (that and the crazy doc who said to wait a MONTH to check my INR again), in the middle of one of my morning classes my heart felt like it hesitated for an instant, the blood felt like it was draining from my head, I started to get a little bit of tunnel vision, then my heart began to pound really fast and I felt light headed. I sat down and started to try and take my pulse, but it stopped almost as quickly as it had started. Then, while I was on the phone with the PA, explaining what had happened, it happened again. Same exact thing. So I decided I might want to let the school nurse know what was going on JUST IN CASE! I wasn't expecting anything bad to happen, just wanted someone to be aware in case something did. While I was talking to her, it happened AGAIN. So I sat down just to regain my breath and she started saying I should go on home. I told her I didn't feel that was necissary, I just wanted her to be aware of what was going on. She insisted that I should go home, and even went and got the principal to try and convince me I should go. There was no way I was going to leave. I had my first reheasal with my students after school, and I have to save my sick days for times when I REALLY need it. I was finally able to convince them that if it continued to happen I'd consider going home. It happened one or two more times, but I didn't tell them. There was no way I was going to let this little thing get in the way of my life.

Anyway, my card wanted me to call my electrophysiologist and find out what she wanted me to do, then let her know. But I was unable to talk to anyone today, and hopefully will be able to talk to them tomorrow. So, anyone have any suggestions? I'm probably going to try to schedule an appt to get a 24 hour holtor done this week, or next. But nothing ever happens when I'm on those things... Oh, well. I've been fine since lunch.

There I go, being long winded again... Too bad it's just in my writing and not my lungs.

Later,

 

[Gnusgal]

John

John

LOL!!! That's funny.
My book was called "The Sensous Heart," if I recall correctly. If you need to know anything, I can send you snipits . After all, I've read the book cover to cover, I'm an expert now.