Joy's Journal

Marie Myers  Sorry to hear about your situation! Is there any way you can get insurance through your husband?  Can you continue Cobra through your lost job? Cobra may be expensive, but if you were happy with your insurance , I would continue it. I went through a similar situation myself just prior to my heart surgery, and I wish I had paid the Cobra premiums to keep what insurance I had. Keep us posted and good luck! It will be frustrating, but you can get through it!

Rose Madura  Great advice Marie. I paid for Cobra and was glad I did.  My deductible was close to being met and so that continued with Cobra.  It was 102% of what the company paid.  Yes, expensive but worth it in my case anyway.

Joy Smith  I can continue with cobra but at a cost of $2,000 a month.  I’ll go on my husbands but I dunno what and how much they will cover, if they are willing to pay for such a surgery for a new member. I’ve heard many people have problems with avr and health insurance claims. 

Susan Lynn  Joy - Part of HIPAA legislation restricts group health care plans from excluding coverage for pre-existing conditions, so you should be fine on your husband's plan. Your surgeon's office will likely have to pre-authorize your tests and procedure any way, so you can find out in advance what your financial obligation will be. You'll certainly be responsible for the deductible on his plan and possibly will want to consider that the copay and non-covered expenses may run you up to the out-of-pocket maximum when all is said and done. Be sure you know whether all the providers and facilities you plan to use are in-network or your expenses could be significantly higher. Best of luck with your research.

Rita Savelis  You can keep eating plants on anticoagulants. You can eat everything you normally do in moderation. You adapt your med dose around what you notmally eat. You can go to amusement parks and spas. Your life will be different because it always is as one moves into a new normal, but there is no reason not to continue as you did before.  I'm very sorry for your loss and having to have valve surgery after that is alot.  Having to have it under 50 is hard. Therapy can help. Talking can help. Take care.

Joy Smith  Huh.  I was told much different from others.  No more spas/hot tubs, no more rides, basically my life will be very altered.  No more broccoli and Spinich etc. my second therapy appt is Friday. 

Joy Smith  And agree.  Having this meeting 50 is rough.  I see it in people in their 60s, 70’s snd 80’s getting the surgery.  My mom made it to 85 with it and never had ohs.  She did say a repair so I’m wondering if they did tvar and she did not notice but she had CAD so I dunno if they would have done tvar on her. 

Rita Savelis  I eat broccoli and spinach. There is nothing I don't eat. Some people think you have to drop certain foods but it's not really true, you just have to adapt your meds around what you normally eat. It's better not to drink too much alcohol though. But a few drinks is okay. There was a patient on this site who loved roller coasters and couldn't wait to get back on them after OHS. And she did. I go in hot water and saunas and hammams (If that's what you mean by spas). I was 53 when I had OHS and was jealous of older people wishing that this all hadn't happened to me until I was 70. I hear you. It's awful. One goes through every emotion. And then somehow you make it through.

  Joy, so sorry you are having all these symptoms. Glad your doctor is monitoring them and doing the best he can. Yes, continue to rest and take it easy. Wish you feel better. Will pray for you to feel better. Keep us posted. ❤️🙏

Richard Munson  The best remedy for fatigue is to pound out a few miles on the treadmill. It also takes your mind off heart surgery. 

Joy Smith  Richard I’m to scared to move.  I’m terrified I’m going to have a heart attack and die. When I tell people what’s going on I hear “oh I know somebody who had that. They were doing something and just died”.  Not the comforting words I need to hear considering how terrified I am. I’ve become a couch potato when not at work because im terrified to move. 

Marie Myers  Joy, I think you need to have a talk with your cardiologist to ask them just what types of activities are safe for you to do. Even going for a 10 minute walk can help relieve stress. 

Richard Munson  I am probably the wrong person to comment on your anxiety after my recent bout of depression when my dog died but you could also get hit by a car and die much easier. So what do you do, not go outside ? What’s important is that i did something about it. Not just sitting on the couch and wringing your hands is probably not the solution. Talking to just people and not your doctor who knows your situation is not the best medicine either. 

Joy Smith  And plus my doctor does not communicate.  His staff is rude. I called again yesterday with no success. 

Kimberly Eisenhut  Find a doctor with a hospital that has a patient portal if you can. I get answers to questions and my nerves calm just from a response to any concern I have through using the patient portal with Northwestern here in my area of Illinois. Most hospitals have them now, so be sure to sign up and use it if possible. The nurses in your cardiologists office will answer questons much more quickly this way. If they do not, it may be time to switch Drs.
I had 3 different cardiologists tell me three different things at the beginning. First one insisted I had Pulmonary Hypertension, which later, after I insisted on a heart cath, since that is the Gold standard to diagnose it, it was ruled out. Second one was better, but at one apt told me after I asked," at what point do we consider surgery", he replied in front of my daughter, "Well, you're kidneys aren't failing yet are they?" I knew it was time to look again, that's when I found a cardiac specialist at Norwestern in Chicago. I feel I'm in good hands now and am still in wait mode since I have a very rare Tricuspid regurgitation which is moderate to severe, with an anuerytic aortic artery of 4.1. They do not do surgery on tricuspid unless it is severe and you are having significant symptoms. I do get out of breath easily and my ankles swell a little by end of day, but not significantly.
It can get daunting, but you are worth it and deserve to find the best Dr. for you. Do not give up or throw up you hands, keep fighting for what you need and things will work out.

If you ever need to ask questions or just post something going on, this is a wonderful place to do it. Myself as well as all 3 of my children suffer with anxiety and it can be quite draining at times, but there are ways to cope and you are not alone! I have adopted several hobbies like drawing, gaming (SIMS is my go to these days), my dogs, walking is probably the best as well as daily video calls with my daughter and seeing her, my granddaughter and son in law and her 3 dogs always makes me smile. I still have a teenage son I live with as a single mom, and am now teaching him to drive, that helps also. He's a good driver, so it is not stressful.
If you have pets, please post picts and if you don't, post things that make you smile so we can smile with you :) Much love, hugs and good wishes to you

Ellen Higgs  Joy, I am the caretaker to my husband and I can understand completely how you are feeling.  My husband went all his life, knowing he had a murmur, but was told it was no big deal.  He was never monitored - we never, ever, felt a heart issue would come about from it.  Then in 2017 it all changed.  He went in for an annual physical and they heard regurgitation and sent him to the cardiologist.  That set us on our journey to surgery in 2019.  It’s been stressful and anxiety producing…some days harder than others.  Jim is they type of man that appears as though he would never have anything wrong with him.  His daughter and I were so confused by the information, but we pushed forward and we did it together.  Now we are right back in that seat again, barely 3 years from his previous surgery.  I am sick at moments knowing he has to go through a full, open heart and that we have a whole other road of recovery ahead of us.  However, I have faith that we are watched and guided all the time.  That for me, God is walking us through this, has plans for Jim and so he made us aware of the issue so we can take care of it.
Do you have any caretaking support?  I know therapists can be very hard to find.  I was going to ask Adam, the creator of this site, to find out if he’s explored emotional support groups as part of this journey.  It actually confuses me that the hospitals do not have something set up where you meet with a counselor that has intimate knowledge of the procedures, etc…so they can help each of us deal with our emotions around it.  I can at least say that Adam has created an amazing resource here where we can all be there for each other and share info.  
There are videos online for breathing techniques to help calm anxiety and inspirational videos to
 help pull us out of the mind talk that can be debilitating.  Is there anything you like to do?  Puzzles, art, anything that can help distract you for a bit?
I’m sending prayers your way.  I have a sticky note on a board on my wall that say, “Worry is like a rocking chair.  It keeps us busy but doesn’t get us anywhere.”  It helps me remember to stay in the moment and take one step at a time.  ❤️

Joy Smith  My husband will be my caretaker providing his job lets him off. I have nobody else.  Most don’t even seem to care I’m even going through this, nobody checks on me and few message me. I just live in my my own head.  I like music and art.  I see my fav band in a few weeks but I hear the loud bass from the show is not good for me.  I know the guys so I plan to tell them what’s going on and hope they give me some strength and comfort.  I color a lot. I have a massive collection of adult coloring books and I also have a coloring app on my phone I use a lot. 

Ellen Higgs  That sounds hard Joy.  I’m glad to hear you have some creative outlets.  Focus on those things and know we’re all here.  It’s going to be ok.

Civita Fahey  I had the same issue. Bill Paxton had just died right before my valve and my anxiety kicked in. But, just have faith that all will go well. John Ritter died of an aortic dissection, I believe he didn't know he had a BAV and aneursym. Again, have faith in your team. All will go well. Best of luck. 

Joy Smith  I’m just lucky I decided to see my cardiologist after 6 years.  I have health anxiety so I avoid doctors like the plague and I decided to go.  I knew I was born with this but my whole life only once something was said and that was a few cardiologists ago. 

Richard Munson  Sounds like you are are answering your own question of non fix fatal vs. 99% healthy life. What in this world is 100% ? Probably nothing. Odds are you have chosen many paths in life where the odds were way less than 99%. Even marriage is way less. Lol. And many still take it. 

Joy Smith  Where I live I have a bigger chance of a fatal car wreck due to bad and drunk drivers here but I still drive.  It’s learning to see the perspective. 

Richard Munson  Well said. Get it fixed so we can cheer your recovery. Looking forward to it. Don’t wait too long, i’m getting old.

Robin Shanahan  Joy, I just went through a week of what ifs, tears, fear and all of the emotions you are having.  My surgery is scheduled for June 7.  I really feel I had to go through all of that to get to where I am today and that is Knowing what I have is fixable and this surgery is going to fix me, and I am ready to get to the recovery side.  Prayer helped me through this past week, God bless you

Joy Smith  I’m aiming for July/Aug.  but I need my second opinion first. My current cardiologist is just not the same as he was and I’m no longer happy, all I have is fear.  I feel like plans should be in the talks at this point. 

Richard Munson  Just pick someone that specializes in your particular issue and has a lengthy track record. Even if it means a trip. I was lucky being near boston but some are not as fortunate.

  Baylor has a few surgeons that are listed on therossprocedure.org if you have any interest in the Ross procedure.

Rose Madura  Hi Joy, It's definitely a personal choice but once you make it, go with it and don't second guess yourself. 

Ellen Higgs  Hi Joy, my husband was diagnosed with severe aortic stenosis in 2017.  Our worlds flipped upside down with the diagnosis so I understand your fear.  Just know that so much progress has been made with these surgeries.  We are so fortunate to live in a time where we have the procedures to fix the issue.  Hang in there, one step at a time.

Gerald Poulton  Joy is right, I was scared too, everyone is, the valve choice is a hard one to make, depending on your age, do lots of research, and then look forward to a better life on the recovery side. Not that many years ago we may have died, we are fortunate that these  doctors do these operations ! You will be fine, 

Rose Madura  It's normal to be scared.  Good for you for getting a second opinion.  Smart move! Do your research and pick the best doctor you can find and with whom you are comfortable. Let us know if you have any questions.  Godspeed. 

Joy Smith  Thank you all!  I’ve never had surgery before so naturally my first has to be this.  I’m scared I won’t wake up.  

Ellen Higgs  Joy, you aren’t alone in those feelings.  My husband felt the exact same way.  He too had never had a surgery.  I even believe he feels the same way as he faces his second surgery - it’s just natural.  The surgery and teams today are amazing - you’ll be well taken care of and on your way to recovery in no time.