Need some encouragement for teen patient

[hannahsmom]

Hello,

It's been a while since I've written about Hannah. Heart wise she is doing really well. (AVR with adult size mechanical valve 2010) All of her check ups have been great! On the other hand her INR has been all over the place for the last year and a half to two years. This change, I feel, has increased Hannah's awareness and focus on her condition. She has recently dealt with a few panic attacks (they run in the family) that seem to happen when she knows she will be doing heavy working out for cheer and prior to appointments. Of course the symptoms of her attacks trigger her to worry that there's something wrong with her heart and the vicious cycle continues. She's also recently been expressing that no one understands how she feels and it's hard not having anyone to talk to. I try very hard to be there for her, but I understand I cannot truly understand how she feels. I feel like her anxiety, fears expand beyond her condition but I also feel it's the primary catalyst. I know that when I found this place it was a lifesaver for me mentally. Knowing others were dealing with these conditions and still living happy fulfilling lives made me hopeful and positive that Hannah would have the same opportunities.

So as I lay awake in the middle of the night worrying about Hannah worrying too much I thought I'd ask that anyone who had experience with their condition, surgery, anything as a teen (parents of teens patients too) would mind responding and writing about how your experience, coping skills, anything positive that can help Hannah feel a little less alone as a teen with a chronic condition. If you are a parent of an adolescent patient and think they too may want to get to know another teen dealing with it, let me know...this could benefit more than just Hannah. Please feel free to write the response to Hannah as I plan to let her read them.

Thank you in advance for your time.

Kelly

 

[Savymom]

Hi,
I had my surgery 10 years ago and although not a teenager, I was pretty young (25). The shock of needing the surgery caused a lot of fear and anxiety after the AVR. I didn't expect that. I think the first 5 years every time I had a palpitation, or weird feeling, or was extra tired it caused a panic. I instantly thought it was my heart. Eventually it went away, and now I seem to only get anxiety the few weeks leading up to my Apts.

A few things that worked for me was to continue to exercise. Consistent exercise actually reduces anxiety. During a panic attack I sometimes focus on one thing, maybe something I see.. I acknowledge what I see, then what I hear, then what can I touch. There is a name for this technique., but I forgot what it's called. Also, going for a walk. Sounds silly.. but just walking and practicing breathing is helpful to calm my anxious self down.

Teenage years are so tough too because she has all the fluctuations with hormones. I have found that my anxiety Is higher during certain times of my monthly cycle. :/

Best wishes.

 

[pellicle]

Hi Kelly

It's been a while since I've written about Hannah. Heart wise she is doing really well. (AVR with adult size mechanical valve 2010)

thats good to hear

All of her check ups have been great! On the other hand her INR has been all over the place for the last year and a half to two years.

well firstly I'd ask "what is all over the place" in numbers ... if its been between 2 and 4 then that's all quite ok and not in any sort of danger zone.

So as I lay awake in the middle of the night worrying about Hannah worrying too much I thought I'd ask that anyone who had experience with their condition, surgery, anything as a teen (parents of teens patients too) would mind responding and writing about how your experience, coping skills, anything positive that can help Hannah feel a little less alone as a teen with a chronic condition. If you are a parent of an adolescent patient and think they too may want to get to know another teen dealing with it, let me know...this could benefit more than just Hannah. Please feel free to write the response to Hannah as I plan to let her read them.

well back in 2013 I wrote this post to you:
http://www.valvereplacement.org/for...2-sometimes-i-feel-overwhelmed-and-frustrated

and so much of that is still exactly right on with what I feel.

As a kid I found it frustrating that I was in some sort of category by myself. I was sportingly inclined yet unable to do anything sporting due to my condition. I was not operated on till 10 and my surgeon had given my mum the willies by saying all the sorts of things surgeons say. I was too young to know if it was his "fault" or mums in going over the top. None the less (perhaps also being a boy) the urge to rebel and push boundaries.

I found it frustrating that I could not keep up with the fitter lads but yet wasn't in the couch potato zone either. This sort of limited my friends. I expect that today its different because there is more online / gaming stuff where people don't do stuff (like ride their bikes 10Km out into the bush and plink at tins and stuff with their air rifle as we did when I was a kid).

I sort of became a more studious person and became a widely read book worm and science nut. By 15 I'd read all the works of the majors of SciFi (Asimov, Clarke, P.K.Dick, Harry Harrison, Larry Niven ...) as well as got into building flying model air craft and rockets as well as bought a MX motorbike and was tinkering with and riding that.

You can spot that all these things are not really group things.

My advice is to let her find her own way, support and guide but without worrying. People find their own level ... there is some sort of myth that we all have to "have it sorted out" by 20, but to be honest I've had enough career changes (due to economic shifts globally) to make that idea junk. What I'm saying is, you're never too old to go to Uni, or make a change in your life.

Happy to chat more if you want to.

 

[pellicle]

douh ... duplicate

 

[tom in MO]

You do not say how old Hannah is. If she is a teenager, maybe she needs to more about her condition. The most basic fear is of the unknown. If she still has a child's conception of her condition, but is enough of an adult to worry, she may need to get a higher level of understanding about her INR, her valve and how it effects her physiology and life.

Teenagers naturally rebel against things and she may need to hear this from someone new or do the investigation herself to get a better and more personal understanding. Be aware of your own anxiety and try not to transfer it to her by word, action or being over protective. She needs to find her way and make her own decisions and mistakes. If she is not really a child, maybe it is time to transition to her the responsibility for testing and medication. Sometimes control of things can help alleviate the anxiety.

 

[hannahsmom]

Thank you everyone for your responses. Hannah was 10 when she had her replacement and is now 15 going on 16. Her awareness, fears, anxiety, and bitterness regarding her condition has increased substantially as she ages. So I apologize if you feel I've written the same questions before. As I parent, especially a mom, I feel guilt and helplessness every day. I like to hear from patients, it helps me understand her better.

In regards to her INR she is usually between 2 and 4 but in they are usually big jumps between testing so the worry is that it's never consistent enough to trust, so she's visiting the lab often (another big annoyance of hers). We were stable for 3 years, with monthly draws until her hormones kicked in and everything went awry.

I am very good at hiding my emotions for her sake. My mom liked to project all of her worries on to me and look where I am today . I prayed Hannah wouldn't be dealing with anxiety on top of everything else.

Again I thank you all for your responses. This life is not easy on anyone and knowing we aren't alone is very comforting.

 

[pellicle]

Hi there
its sad that she is reacting that way. I would actually think that it may be good to get some counselling on that. I personally have no recollections of feeling that. I suspect that its contributed to by the modern visual media where all we see that represents a good person is the physical attractiveness. Its quite sad the way its going.

.... So I apologize if you feel I've written the same questions before. As I parent, especially a mom, I feel guilt and helplessness every day. I like to hear from patients, it helps me understand her better.

I wasn't meaning to chide you so much as point you back to that. Myself I like to keep a blog so that when I write something that helps me feel better or more positive about the things which get me down I go back and read them again. I was pointing you at that post so that you can perhaps also go back and read them again. I am sorry if my words seemed to be suggesting "dont ask that its already been asked". Its often good to engage in discussion and I know myself I often discuss the same thing many times.

In regards to her INR she is usually between 2 and 4 but in they are usually big jumps between testing

I guess that you mean big gaps in between testing, because its usually between 2 and 4 right? Why don't you just buy a home tester, buy the strips and just test yourself every week and journal it like I do? Its a small cost (less than a beer at a pub per strip) and good testers are cheap on ebay (because X bought one for mum and she won't us it) so you can then give yourself (and herself) confidence and knowledge between tests.

Also don't worry because those variations are not worrisome. My INR varies between 3.x and 2 and thats both "normal" and not a problem. Its not a problem because while its travelling between those edges of my range it has to spend more time in the middle. I show both my Dr and Surgeon my data (below) and they are really happy with my results and consider me stable.

so perhaps its also about managing expectations? As you can see also in that graph my INR was the most irregular when I attempted to make small adjustments in dose to compensate for high events. Notice that the adjustments (the right hand Y axis) are quite mild, just from 7 to 8.5 (once) and mostly between 7 and 8 mg per day. I wanted to see if my view was right : do not adjust dose unless its a trend high. Note these are weekly readings.

so the worry is that it's never consistent enough to trust, so she's visiting the lab often (another big annoyance of hers). We were stable for 3 years, with monthly draws until her hormones kicked in and everything went awry.

I wonder if (as you mention) you are as good at hiding it from her as you may think? I believe that kids are much smarter at guessing our emotions than often given credit for. I was.

I reckon that its like the dark room which is scary, turn on the lights and its not scary anymore. Information and understanding helps. You need to understand the data or you are just overwhelmed with it. My lovely Anita took to researching Vitamin K in foods as soon as she knew how warfarin worked. She was confronting her anxiety that her husband was on a drug that needed careful management. I am much the same as my wife and turned my attention to it, but from my insides (hence all my study on how it works and my results).

Just knowing that has helped me, it can help you.

I would be happy to help you if you like. PM me and we can perhaps skype about it.

Best Wishes

 

[MrsBray]

Hi Hannah and Kelly! I have an On-X valve, I'm not a teen, and I'm not a mom. My INR goes wacky too, there are just so many factors that affect if - hormones, exercise, foods. Sometimes I find myself eating too much green stuff or skipping a workout. When I think really hard about why I'm doing it, it's to exert some sort of control on my blood levels. I hate having to think about crap like that!
Anyway, the best benefit to me, pre- and post- surgery, was to find people like me. Not necessarily in person, or even to interact with, but just to know that there were others like me out there. Maybe someone at Cleveland Clinic could help you find an organization.
Teens get left behind sometimes, the little (cute) ones get attention, and the majority of heart patients are much older. Add to that the drama of being a teenager, and yeah, I'm sure Hannah feels all alone. But she's not - there are heart patients EVERYWHERE. I bet there's a forum out there, in a respectable online community, that is perfect for her. Just not on facebook!

 

[pellicle]

Hi there

My INR goes wacky too, there are just so many factors that affect if - hormones, exercise, foods. Sometimes I find myself eating too much green stuff or skipping a workout. When I think really hard about why I'm doing it, it's to exert some sort of control on my blood levels. I hate having to think about crap like that!

Do you home test? If so ok, let me propose a test to you (which naturally I've done myself). Spend two weeks and eat nothing green. Oats, bread, milk, potatoes, meat, fish, but no greens.

Note your INR

Now do it again and eat exactly what you fancy

Note your INR

now, compare it to your records and see if it falls within the usual ranges or if it was effected. After three years of checking I can't find anything to suggest it makes any difference. Plenty of other long termers here will say they've observed similar.

You gotta do this scientifically (recording numbers in a book or spread sheet) or your feelings and (naturally inaccurate) memory will bias your feeling on what the results actually are.

The reason for doing this is to give yourself peace of mind and assurance.

Best Wishes

 

[carolinemc]

hannahsmom, have you talked to her cardio or the hospital about a group she could get with, to talk about her feeling and fears. This is not uncommon when they are new to everything and still fear he unknown. Hospitals now have groups that help people going throught health issues such as heart disease and oph. She needs to get witha group of her own age. Just ask the people at the hospital. Good luck to ger her spme help in her age group. No matter what, it is hard for a teen to learn new things that will be a lifetime of care. Hugs for the both of you.

 

[carolinemc]

hannahsmom, have you talked to her cardio or the hospital about a group she could get with, to talk about her feeling and fears. This is not uncommon when they are new to everything and still fear he unknown. Hospitals now have groups that help people going throught health issues such as heart disease and oph. She needs to get witha group of her own age. Just ask the people at the hospital. Good luck to ger her spme help in her age group. No matter what, it is hard for a teen to learn new things that will be a lifetime of care. Hugs for the both of you.

 

[dornole]

Maybe she would like to read some of the "active lifestyles" threads and see how many people are living epically after valve replacement. Could you write her a "self-talk" paragraph that she can read when she is feeling down, or help her do this exercise: Write down all the anxious / negative thoughts she is having, and then write wise thoughts with the perspective that she would rather have. Then cross out the bad ones and read the good ones as much as needed to keep a balanced outlook. I have found this technique very helpful personally and with my teens.