Mia's Heart Valve Journal

Jeffrey Jacobs posted a note for Mia that says: Mia, You have quite a story of trial and tribulation. I have a heart valve 'condition' and am looking at surgery soon. It is new for me, so you are inspirational and a big help to other people. I hope you are doing well.

carol navin posted a note for Mia that says: Hi Mia, im wondering how you are feeling. Im considering having my wires removed. I have chest pain ..14 months post op . My surgeons office said .. my wires are close to the surface. They are not poking out however i think it may be my only hope to be out of pai n completely. im extremely nervous to undertake another procedure.

Rukhsana posted a note for Mia that says: Yes , it will tick for a very long time. Congratulations that it worked to get the wires removed . Good for the rest to know about it. You been brave and I hope you will continue being so. Best of luck lots of prayers for you.

Jackie🌸 posted a note for Mia that says: Maya,
Prayers, positive energy and healing thoughts are going out for you and your friend.💕

Jackie🌸 posted a note for Mia that says: Mia,
So glad to hear that you are continuing to improve. 😊 Remember to listen to your body...rest when it tells you to, tomorrow is another day.
Most things can be completed the next day. Praying for continued healing and less pain for you. 🙏🏻 💗

Joseph Kusiak posted a note for Mia that says: Hi Mia,
I had OHS for a bicuspid aortic valve 4 months ago and I am doing great. My wife actually found Adams book online shortly after I was diagnosed (7/3/13) with aortic stenosis. Any information to help others I feel is a good thing and people today turn more and more to the internet.
I am so glad you are feeling better in CA.

Carol Jackson posted a note for Mia that says: Mia,
I heard about Adam Pick' s book about 41/2-5 years ago. I talked to a friend of a friend who had just had valve surgery and he told me about the book and Adam's basic web site. It made it so much easier for me to deal with my health issue through the following 5 years before I had surgery.

So glad you figured out that it was the altitude that made you not feel well. Onward and upward!

Deb Ziegler posted a note for Mia that says: Mia,

I was so happy to read that you are feeling better now that you have moved! It has to be such a joy (and relief!) to feel well again. I am really happy for you!

I am heading to the mountains for Christmas, and I'm hoping to feel better this trip. If not, I guess I will have to give up my dream of living in the mountains someday.

Hope you love your new life in California!
Good luck!

Carol J posted a note for Mia that says: What a brave young lady! You have been through a lot. My daughter lives in Denver so the last few years when I would go out to see her(before my surgery) I seemed to have some problems with altitude and really had trouble going up steps. Now that I'm on the other side of surgery I am wondering how I will be?
My nurse/helper just told me that her parents lived in Dillon for 15 years and recently her dad had heart problems and her mom had to be on oxygen. They moved back to the Midwest and within 6 months her mom was off oxygen and her dad felt much better that he could return to cycling.

Linda Johnson posted a note for Mia that says: A good, honest rant is the best medicine. We spend so much energy "being strong", trying to have a "good attitude", our real selves get lost in the shuffle. This is a great place to do that. I was having a nice little pity party for myself today but your story pulled me right out of it. Love and the best to you, Mia.

Deb Ziegler posted a note for Mia that says: Yes, Mia, I have thoughts about altitude sickness because it also happens to me every time I go to altitude. I had mitral and tricuspid valve repairs two years ago, and every time I go to altitude I feel horrible. I don't have chest pain, but I do feel dizzy, extremely anxious, weak and have a lot of palpitations. I never had a problem before surgery, and like you, I have yet to find a doctor who can explain it. I went back to Cleveland Clinic last week (which is where I had my surgery) and asked my cardiologist there why it was happening, and he said he didn't think it was heart related and to just suck it up. I truly believe it is is heart related because I never had it before surgery. Fortunately,I live in Wisconsin near sea level and feel well most of the time. I can't imagine feeling like that all the time! The cardiologist did recommend trying to take acetazolamide, which is supposed to help with altitude sickness, but I had tried it in the past and had a bad reaction to it. So, you might try that before moving. Otherwise, I would think moving to a lower altitude would be a relief physically and mentally, if you can swing it.

I am headed back to Colorado to ski in December, and I'm hoping to feel better next time. I'm going to try to "suck it up" because I really love to ski! I will keep you in my thoughts and prayers, and I will definitely let you know if I ever figure anything out.

God speed and God Bless,

I have not read or understood the entire problem and your story since an hour ago. Grately touched . What you been going thru. You are a brave young girl. Even I need to learn a lot from your strength and confidence. I had my mitral valve replaced last dec 2011 in Pakistan. I am doing fine . I have a daughter 22 years old . Finished her graduation in London and now doing a job. I want to be strong and healthy till she is settled. There are issues which keep me depressed . The surgery sticks to my mind .
Wish you every best in your life . God will look after you and your wellness.

Hi Mia,

Glad you are feeling better, having heart problems at a young age is no fun. I had my first heart surgery when I was 7 and now looking to fix my bicuspid valve that I've had since birth.

If you ever need someone to talk to please feel free to contact me on here.

My daughter is about your age and while she does not have any heart issues she does have Celiac and has to be 100% gluten free, we just found out abut that a year ago.

Best of luck to you,
Cindy Pastrano

Hi Mia,
Good to hear that you re doing better. It has to be tough for someone as young as you. My grandson lived 8 hours after birth due to a heart defect. My daughter had no clue that anything was wrong with her baby until he was born.

This is my 3rd week post op. I haven't had any real complications but just the surgery itself is tough.

I wish this site had a calendar of upcoming surgeries or a way to pull up people by age, location, etc.

You sound like a real inspiration to all of us older people on here.

Take care and keep posting.

Jan Beale.

Mia, thanks for posting again so those of us like me, who are new (AVR and root repair 2-2-12), can learn about you. You sure seem like one tough young woman and I commend you for all you have accomplished. You may not be at 100% yet, but sounds like you are getting close. Keep up all the good work.

All the best,
-Mitch Friedman

Wow Mia...you're a very brave young lady. I am fairly new to the HVJ site, I will be having my aortic valve replaced on March 13th. You are another inspiration and encouragement for me. Everyone here is so supportive, I'm glad you posted in your journal, so I could "meet" you. So happy birthday new heart valve!!!
One year old!!

Hope you continue to do well, please keep us updated.

Linda Dixon

Hi Mia,

We're thinking of you.

- Mr and Mrs Kim ;)

Mia,

I was journalling myself and my daughter, Mia (6), saw your journal and wanted to read it. Now she wants to say please get better soon!

On the subject of sleep, I've seen journals where people say that sleeping sitting up, like in a recliner, helps. If you have one it might be worth a try, maybe just a nap to test it out.

Best of luck from here on out

Joe (and Mia) Gimbel

Hi Mia,

It's very common for people who have had their gall bladder removed to continue having gastric problems, sometimes for years, but especially for the first year or so. I know it's very hard. Talk with your doctor about what you're experiencing. It might be good to look for a doctor who specializes in gall bladder problems.

I hope you start feeling better very soon.
Ricki Shine

Have you or your parents spoken to your primary Physician regarding your most recent symptoms or discomfort? That's where I would began.

Terry T.
mitral valve repair 12/2010

Mia,

I understand how you feel. I don't know your age, but you sound like your may be in your teen.

when I was 24 years old. I had Cancer, Hodgkins. I felt so alone, know one in my family or any of my friends could understand what I was feeling. Find somewhere or someone you can express your feelings to. Some one who is not going to judge you or discount your feelings! I just kept pluging along. I didn't have the physcial pain you are experiencing. Mine was emotional. You have both. Be strong! Please write me if you would like. Perhaps I can save you some time and hurt in your healing process. See if you can find a massage therapist that works with scar release. Not just any therapist. Find one and ask for referance, then check them out. My therapist has done wonders for me from my first heart surgery. The pain has really been relieved so much. Let me know if you find one and see her as often as you can, at least once a week. I look forward to hearing back from you. Some of us have heavier crosses to carry than others. I know my cross has made me a much stronger person. My surgeon said to my husband, "shes tough isn't she". I am, proud of it, and you can be also.

Be strong,
Frieda

Please don't feel that you are alone in this. It has been 11 months since my surgery and I can relate to you in terms of recovery. Mine has also been a tough road and I cant say that I am completely healed. My cardiologist reduced my medicines and that doesnt seem to be going well with my body. I seem to be having severe withdrawl symptoms. I am feeling a little short of breath and my BP seems to be low. I dont kn ow when this is all going to go aweay. I live in the hope that tomorrow would be a better day. So please keep your chin up and things will get better.I have faith and so should you.
Sara

I'm so sorry to hear about your pain issues Mia. That can't be fun, especially at your age when you should be living a happy, active life. When I had my spinal fusion in 2004 I had severe pain for months and months afterwards and my doc ended up sending me to a pain management dr. That made all the difference. And once my pain was managed I was able to begin the healing process. I found that I was moving and tensing up in such a stilted way when I was in pain that it caused me more pain. So when the pain was controlled my body relaxed and healed. You should discuss this with a dr and ask for a pain management evaluation possibly if you are still having so much pain. I know with younger people, such as yourself, they are less likly to give you the good pain meds because of addiction concerns, and that's a valid concern. But no one should have to live in severe pain, no matter what their age.

Best of luck to you. I hope you feel better real soon!

Terri Grimes