Sadness over diagnosis

Posted by catmom777 @catmom777, Sat, Mar 30 6:04pm

I feel so sad about being diagnosed with afib. I also have some breathing issues (which might be causing my afib) and think I might have chronic bronchitis. I was also diagnosed with osteoporosis. None of these are a death sentence per se, but after a lifetime of being extremely healthy, I feel defeated. I did not see any of this coming except the breathing issues as I've had repeated bouts of bronchitis since I was a child. I'm having trouble coping. I first thought I might not live much longer (didn't know anything about afib) and started going through my stuff so my family wouldn't have to deal with a lot of junk if I died, then got a handle on that when I learned that afib sufferers can live a long time, but I still feel devastated.
Is anyone else out there dealing with this?

@catmom777

I gosh. I am so sorry. I am thinking that that is down the line for me as well because my mom has dementia.
She started showing signs at age 76 and I'm now 65, so I figure I will also show signs in ten years. She is 88 now and still lives on her own. It is a scary diagnosis. I hope you have some resources in your city or town that you can call to help you navigate this. Do you have family that lives in your town? Can they help you get through this?

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Hi Catmom777,
I agree, dementia is scary, but you can't let the possibility of getting it someday worry you.

My dad was the youngest of 5 children.
His parents died young, when he was in the service.
My grandmother had heart disease and my grandfather liver cancer.
Of course, who knows what would have happened if they lived in a different time where medicine, surgery and early detection was available.

My dad's oldest sister feared dying young.
She never mentioned from what.
I'm here to tell you that she went on to live into her mid-90s.
She developed dementia in her late 79s and breast cancer.

One of my dad's sisters developed heart disease and died in her 70s.
My dad developed heart disease in his 40s, probably due to smoking and eating wrong.
My dad also developed dementia. That happened in his 70s.
My dad, who lived with heart disease since his 40s, had 2 by-pass operations, and a couple of pace-makers went on to live into his mid-80s.

My mom was the middle child of 5.
My grandmother died at 87.
She broke a hip and had a stroke; she was never the same after the stroke.
My grandfather died at 91.
NOTHING was wrong with him.
He was a smoker ALL of his life!
He woke up one day, didn't feel well, and was dead by nightfall.
Three of my mother's siblings died in their late 60s/ealry 70s.
My mom, a non-smoker died from lung cancer at 67.
Her oldest sister died in her mid-90s….just old age.
Her youngest brother and my only surviving blood uncle or aunt is still alive.
This year, he was dianosed with some sort of cancer.
They gave him treatment to shrink the tumor so he'd be comfortable.

Why all this?
Genetics!
When my dad had his first heart surgery I was terrified I have heart disease and die young.
No heart disease and still around.
When my mother had lung cancer and died at 67, again I was terrfied.
This time, however, I do have nodules on my lungs that are watched.

Guess what I wanted to say in this overly long post is that genetics certainly plays a part in what happens to us and NOTHING we can do will stop some terrible infliction from getting us.
However, as I said before, times and medicine is constantly changing. It is no longer guaranteed that we will develop what our ancestors had (has).
There are certain things we certainly can do to help eradicate the disease from getting to us or at least postponing it and lessening it.
So, if developing dementia is truly scaring you, do something to try to at least prolong it.
Eat right and exercise your body and especially your brain.
As you know, your brain is a muscle….use it or lose it.
Do things that challenege you, read, learn something new, do puzzles, construct something, take a class, etc.
Don't let the disease get you before it gets you!

Happy Friday!
Ronnie (GRANDMAr)

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@cathy514

just diagnosed dementia very sad and scared

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@cathy514 Cathy, I am so sorry about your diagnosis. You have some good ideas there from @grandmar and @hopeful33250.

I understand totally how frightening that diagnosis is. When I first had HE episodes, prior to them being recognized as a cirrhosis symptom, my PCP called me and said she thought I had Alzheimer's! That thought has never left my mind.

Please do try some of the suggestions, they definitely could help.
Hugs, JK

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@cathy514 I am so sorry about your dx. I can’t imagine what you must feel. You need to let yourself grieve and don’t beat yourself up about it! I am praying for you and trying to come with suggestions! Karen

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@cathy514

just diagnosed dementia very sad and scared

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Hi @cathy514 – I am so sorry about your diagnosis. I know how scary it was for us when my husband was diagnosed so I can imagine what you are going through. On another post, I think you asked for information about getting seen at Mayo. Here is a link that might help you get more information on that. If it doesn't come up right at the top, scroll down until you see the part about self-referral to Mayo.
Wishing you the very best:
https://connect.mayoclinic.org/discussion/can-mayo-help-with-undiagnosed-fatigue-and-brain-fog/

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Being hit with a bad health diagnosis is enough to knock the strongest healthy person down. I had AFIB which only came out in my late 40s. After multiple doctors appts, different facilities, I found out it was caused by genetic heart condition. I ended up having major heart surgery, 6 to be exact, almost dying 2 times, putting on 60 pounds from being immobile, all over 4 year time table. After all that, I was told I would need to be put on heart transplant list. It was at this point I said to myself HELL NO! Not yet, I am too young! I was used to hiking, walking, running, kayaking, etc… This can’t be my life!
I joined a support group with people who have various illness and it was best move I made. I lost 30 pounds just dieting ( because any exertion would cause heart to start going into failure). I can finally walk up and down my driveway with no help! I’m working on the other 30 pounds so can increase my walking and make me feel stronger.
Last time I saw the 2 cardiologists (during simple gall bladder surgery) I was walking in hallway in hospital, their mouths dropped open. They could not believe how well I looked and was doing.
The moral of my story is not to get pity for myself but to show you Do Not Let Your Illness Define Your Life!
Pick yourself up, Accept what your dealing with, Keep moving forward. There will always be a day where you crash and feel sorry for yourself, that’s ok! Just get up the next morning and restart on a good path! I have restarted so many times, my family now uses that word and we laugh about it!
I wish you all the best! Know you are not alone!

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@ninimurphy

Being hit with a bad health diagnosis is enough to knock the strongest healthy person down. I had AFIB which only came out in my late 40s. After multiple doctors appts, different facilities, I found out it was caused by genetic heart condition. I ended up having major heart surgery, 6 to be exact, almost dying 2 times, putting on 60 pounds from being immobile, all over 4 year time table. After all that, I was told I would need to be put on heart transplant list. It was at this point I said to myself HELL NO! Not yet, I am too young! I was used to hiking, walking, running, kayaking, etc… This can’t be my life!
I joined a support group with people who have various illness and it was best move I made. I lost 30 pounds just dieting ( because any exertion would cause heart to start going into failure). I can finally walk up and down my driveway with no help! I’m working on the other 30 pounds so can increase my walking and make me feel stronger.
Last time I saw the 2 cardiologists (during simple gall bladder surgery) I was walking in hallway in hospital, their mouths dropped open. They could not believe how well I looked and was doing.
The moral of my story is not to get pity for myself but to show you Do Not Let Your Illness Define Your Life!
Pick yourself up, Accept what your dealing with, Keep moving forward. There will always be a day where you crash and feel sorry for yourself, that’s ok! Just get up the next morning and restart on a good path! I have restarted so many times, my family now uses that word and we laugh about it!
I wish you all the best! Know you are not alone!

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Thank you for telling us your story. My goodness. You have been through the wringer, and you didn't let it stop you! I like your advice. I am still attempting my restart. Spring helps though. Made it through another winter!! I have not found any support groups here that fit my needs, but have found that walking and hiking help me feel better. I kind of needed to hear from you today though–it gives me some motivation to try harder to deal with this.

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@ninimurphy

Being hit with a bad health diagnosis is enough to knock the strongest healthy person down. I had AFIB which only came out in my late 40s. After multiple doctors appts, different facilities, I found out it was caused by genetic heart condition. I ended up having major heart surgery, 6 to be exact, almost dying 2 times, putting on 60 pounds from being immobile, all over 4 year time table. After all that, I was told I would need to be put on heart transplant list. It was at this point I said to myself HELL NO! Not yet, I am too young! I was used to hiking, walking, running, kayaking, etc… This can’t be my life!
I joined a support group with people who have various illness and it was best move I made. I lost 30 pounds just dieting ( because any exertion would cause heart to start going into failure). I can finally walk up and down my driveway with no help! I’m working on the other 30 pounds so can increase my walking and make me feel stronger.
Last time I saw the 2 cardiologists (during simple gall bladder surgery) I was walking in hallway in hospital, their mouths dropped open. They could not believe how well I looked and was doing.
The moral of my story is not to get pity for myself but to show you Do Not Let Your Illness Define Your Life!
Pick yourself up, Accept what your dealing with, Keep moving forward. There will always be a day where you crash and feel sorry for yourself, that’s ok! Just get up the next morning and restart on a good path! I have restarted so many times, my family now uses that word and we laugh about it!
I wish you all the best! Know you are not alone!

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Plus, I'm all alone. I want it that way, but it makes dealing with serious issues harder I think. I have a couple friends here, but they have issues and lives of their own. My family lives quite a ways away and they're all spread out, but they call to check in. I have joined a church and there are nice folks there, but they aren't like family or close friends. I didn't realize before I got afib and became a little more fragile how beneficial strong and healthy relationships could be. People who have a good family and friend support network are very lucky.

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@catmom777

Plus, I'm all alone. I want it that way, but it makes dealing with serious issues harder I think. I have a couple friends here, but they have issues and lives of their own. My family lives quite a ways away and they're all spread out, but they call to check in. I have joined a church and there are nice folks there, but they aren't like family or close friends. I didn't realize before I got afib and became a little more fragile how beneficial strong and healthy relationships could be. People who have a good family and friend support network are very lucky.

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Keep going strong! Get out on beautiful days in the sunshine, it has been a long winter (at least here in NY) I used to drive to a park that had a lake. Bring a book and enjoy nature. It has a very calming effect if you let yourself absorb it all.
I had a hard time finding a support group. I reached out to various therapist offices and finally found mine. Don’t give up!
If you have time and money, perhaps visit with a family member

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Also, you said you were alone and wanted it that way. I felt that way for 3 years. It wasn’t until after I started to fight back and get moving, that I realized that even short little conversations with family and even strangers I meet, help to make you feel alive! Please try to connect with others. Share your health issues with some, others just laugh with. Interaction with others is very important! If your church has functions, try joining them if your well enough, even if it is something you wouldn’t normally do. Praying you feel better!

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Catmom I want to share my story with PVC'S. Last year at my physical in June at Mayo Clinic in Rochester my doctor asked, did you know you are getting a lot of PVC'S, which I didn't know. The 24 hour halter monitor showed 25% of the time which is not good. I was asked by the heart doctor what I was taking that could cause this, nothing I could think of. I had been taking Miralax for over ten years and it had been giving me diarrhea somedays so I quit taking it to see if it was the culprit. I did a lot of on-line research and read Miralax could cause this and it may take 6 months to get better. At the end of December they were all gone!!! The cause was the Miralax!!!!!! I can't wait for my physical now in June to share my story with my Mayo doctors. I did read on-line about a guy with AFIB that found his were caused by tyramine in foods and when he quit eating these foods his AFIB was gone as well. Take a really good look at what you are putting in your mouth, eating and taking over the counter, maybe even medicine. Hope this helps someone. Good luck Catmom! Mac

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@macto

Catmom I want to share my story with PVC'S. Last year at my physical in June at Mayo Clinic in Rochester my doctor asked, did you know you are getting a lot of PVC'S, which I didn't know. The 24 hour halter monitor showed 25% of the time which is not good. I was asked by the heart doctor what I was taking that could cause this, nothing I could think of. I had been taking Miralax for over ten years and it had been giving me diarrhea somedays so I quit taking it to see if it was the culprit. I did a lot of on-line research and read Miralax could cause this and it may take 6 months to get better. At the end of December they were all gone!!! The cause was the Miralax!!!!!! I can't wait for my physical now in June to share my story with my Mayo doctors. I did read on-line about a guy with AFIB that found his were caused by tyramine in foods and when he quit eating these foods his AFIB was gone as well. Take a really good look at what you are putting in your mouth, eating and taking over the counter, maybe even medicine. Hope this helps someone. Good luck Catmom! Mac

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I've never taken Miralax, but am glad you found your culprit. I think my afib is caused by a perfect storm of problems. First, my dad was a smoker and I've had compromised bronchial tubes since childhood. I used to get really sick when I was a kid, and have struggled on & off with bronchitis my entire life. If I get a cold, there is a good chance it will turn into bronchitis and I'll cough for six weeks, but about a year and a half ago I got a cold from a client and it turned into really bad bronchitis. I coughed for months. Then in December the cough showed up again and I was unable to get rid of it. On top of that I've had intermittent acid reflux for the past couple years. Also, I drank between six and eight ounces of wine (1.5 glasses) every night with dinner, which now I know can cause the heart to work harder and may even interrupt its electrical activity. Also, I have a ACES score of six, which means I have an increased likelihood of developing serious illness and means my life will probably be shortened by a few years (the average is 13 yrs). Additionally I've had a very stressful life between jobs, money issues, and abusive husbands/boyfriends (I am permanently single now). But, in December all this came together and I started not feeling well, then in February had a few heart flutters but I didn't take them seriously because I didn't know what was going on. Then March 8th the proverbial *&^% hit the fan and I wound up going to the ER by ambulance where I was diagnosed with paroxysmal afib/tachycardia. Now I'm struggling to stay ahead of the afib with the help of Diltiazem. I've found that getting even a little bit dehydrated can bring it on, and so can getting very tired. If I get very anxious or stressed that brings it on too.
But otherwise, I've been a lifelong health freak. I eat healthier than almost anyone I know. I'm average weight, my heart is perfect (the docs told me this), I keep active–so my culprit is my breathing issues mainly, followed by the other factors I mentioned.

But, thanks for the input. I wonder what it was in Miralax that set yours off. Maybe it caused you to become dehydrated or have an electrolyte imbalance? I've been drinking low-sodium V8 juice most days now to help with my electrolytes. I think it does help. After I was diagnosed the docs told me to drink lots of fluids, but I overdid it and wound up in the hospital AGAIN!!! This time from a sodium level of 127 when it's supposed to be between 136 and 144. So, I have to be careful with hydration too!

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@ninimurphy

Being hit with a bad health diagnosis is enough to knock the strongest healthy person down. I had AFIB which only came out in my late 40s. After multiple doctors appts, different facilities, I found out it was caused by genetic heart condition. I ended up having major heart surgery, 6 to be exact, almost dying 2 times, putting on 60 pounds from being immobile, all over 4 year time table. After all that, I was told I would need to be put on heart transplant list. It was at this point I said to myself HELL NO! Not yet, I am too young! I was used to hiking, walking, running, kayaking, etc… This can’t be my life!
I joined a support group with people who have various illness and it was best move I made. I lost 30 pounds just dieting ( because any exertion would cause heart to start going into failure). I can finally walk up and down my driveway with no help! I’m working on the other 30 pounds so can increase my walking and make me feel stronger.
Last time I saw the 2 cardiologists (during simple gall bladder surgery) I was walking in hallway in hospital, their mouths dropped open. They could not believe how well I looked and was doing.
The moral of my story is not to get pity for myself but to show you Do Not Let Your Illness Define Your Life!
Pick yourself up, Accept what your dealing with, Keep moving forward. There will always be a day where you crash and feel sorry for yourself, that’s ok! Just get up the next morning and restart on a good path! I have restarted so many times, my family now uses that word and we laugh about it!
I wish you all the best! Know you are not alone!

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@ninimurphy
Thank you for sharing your story.
Your attitude is nothing short of remarkable!
I have no doubt that you are going to be able to accomplish ANYTHING you want in your life.
You are so right DO NOT LET YOUR ILLNESS DEFINE YOUR LIFE!
That, is something I am trying VERY hard to do!

Thank you again and keep on going on…..
Ronnie (GRANDMAr)

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@ninimurphy

Keep going strong! Get out on beautiful days in the sunshine, it has been a long winter (at least here in NY) I used to drive to a park that had a lake. Bring a book and enjoy nature. It has a very calming effect if you let yourself absorb it all.
I had a hard time finding a support group. I reached out to various therapist offices and finally found mine. Don’t give up!
If you have time and money, perhaps visit with a family member

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I am going to be visiting family this summer. I have grandchildren and miss them. But, I do connect with family via phone and text. I will keep looking for ways to interact more with people. I know it's important. I've read that loneliness is as much a killer as heart disease. Ironic that I'm both lonely and have heart issues now. But, I've always felt a little lonely, even when I was married. My 2nd marriage was the about as lonely as I could get. He was very distance and not supportive at all. I am a shy and quiet introvert. But, like you, I enjoy nature. I go on hikes every now and then.

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@catmom777

I am going to be visiting family this summer. I have grandchildren and miss them. But, I do connect with family via phone and text. I will keep looking for ways to interact more with people. I know it's important. I've read that loneliness is as much a killer as heart disease. Ironic that I'm both lonely and have heart issues now. But, I've always felt a little lonely, even when I was married. My 2nd marriage was the about as lonely as I could get. He was very distance and not supportive at all. I am a shy and quiet introvert. But, like you, I enjoy nature. I go on hikes every now and then.

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You sound so sad. I’m sorry. I’m an introvert, too, and quiet, just like you. Have you ever thought about finding a walking group thru the recreation center or the senior center? When I first moved here, I found a walking group and it was great! Also, use yourself to help others. Be a once a week visitor at a nursing home. Or maybe volunteer to be a dog walker at the humane society. Good luck and take care of yourself. Becky

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PLEASE DON'T LET SADNESS TAKE OVER YOUR LIFE….TAKE ONE DAY AT A TIME AND TRY TO ENJOY EVERY MINUTE OF IT…..THERE ARE THINGS SO MUCH WORSE THAN WHAT YOU HAVE.. I TOO HAVE AFIB, AM ON XERALTO DAILY, HAVE STENOSIS IN MY BACK, DEAL WITH ACHING LEGS AND OSTEOPOROSIS EVERY DAY AND AM TAKING CARE OF MY HUSBAND WHO HAS ALS. I AM 87 YRS OLD AND I THANK GOD I AM ALIVE. DON'T DWELL ON THE NEGATIVE, AND BE THANKFUL THAT YOU ARE STILL HERE . WE ALL HAVE SOMETHING TO DEAL WITH, SO TOUGHEN UP AND ENJOY YOUR TIME HERE ON EARTH EVEN THO YOU HAVE SOME BAD DAYS…………..ALLEGRO

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