Marcia1111
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Marcia1111, November 13,  2018  11:47pm EST

Newly diagnosed

Greetings. I’m 42 years old and recently diagnosed with hole in my heart and mitral valve regurgitation. Valve Leakage is at 51% and I’m exhausted just laying here.  I’m scheduled for a catheterization next week. I wish I could get some honest answers from my doctors regarding surgery and life expectancy. I’m sure they don’t want to alarm me. Maybe it’s too soon to tell. In the meantime I feel like I’m in limbo. I wish someone would just lay it out for me without mincing words. I’m a single mom of a 12 yo daughter. I need to make preparations. Any advice? What is the mortality rate for something like this? Thank you in advance 🌻

  • AHAASAKatie
    AHAASAKatie, November 14,  2018  8:57am EST

    Good morning, I am so sorry that you are having to manage this. We have a strong Heart Valve community and I look forward to reading their responses to you. I can provide the Heart Valve patient education resources that we have. Please let me know if I can be of additional assistance. Best Katie 

  • Marcia1111
    Marcia1111, November 14,  2018  12:30pm EST

    Thank you Katie 🙏🏽

  • AmbassadorDN
    AmbassadorDN, November 14,  2018  4:03pm EST

    Welcome, Marcia!

    You are certainly not alone. I was born with mitral regurgitation myself and needed surgery to repair my valve at 30 years old in 2006. I have since had two other mitral valve surgeries, both replacements, in 2016 and 2017. I'm now 43.

    I understand how frightened you feel, but please rest assured that while there are still risks with heart surgery (as with any other surgery), the benefits far outweigh the risks. While you are feeling fatigued from a malfunctioning valve, after surgery and with recovery, you will likely feel better than before. After my first surgery, within weeks, I felt like a teenager again. I had stamina, I could breathe freely, and overall, I felt great. You will experience hills and valleys in your recovery--it's not a smooth ride, and you will likely have some "bumps in the road" as you feel great one day and exhausted another. However, the outcome will likely be positive! One thing I can advise you to do is to go to cardiac rehab after surgery. I didn't do rehab until after my third surgery, and I wished I had done it with the previous two. Cardiac rehab will help you regain your strength as you exercise under medical supervision. Speak with your surgeon about it.

    To help set your mind at ease, speak candidly with your doctor/cardiologist/surgeon about the risks. Don't be afraid to ask the hard questions. Be your own best advocate, and partner with your medical team as you prepare for surgery. Katie gave you a great resource to help you--and feel free to search within the AHA's site for additional information on treating heart valve disease.

    Meanwhile, do you have support--friends and /or family--who can help you as you recover from surgery as well as assist you for caring for your daughter? Make sure you have a post-op plan in place as you will need assistance once you return home from the hospital. Our fellow Ambassador, Christine, wrote a blog a while back with lots of great advice to help patients prepare for and after surgery. Hopefully she will come along soon and reply.

    Please know that we are all here for you, so feel free to ask any other questions or express any other concerns you may have.

    To Heart and Soul Health,

    Ambassador DN

  • Marcia1111
    Marcia1111, November 14,  2018  8:04pm EST

    Grateful for your response Ambassador DN. You really put my mind at ease. Unfortunately I don’t have family support close by and my ex husband is a high functioning alcoholic. I do have one close friend that helps as much as they can and a lot of acquaintances, but I don’t want to burden them. I tend to face a lot of life difficulties alone 😔 

  • AmbassadorC
    AmbassadorC, November 14,  2018  10:10pm EST

    Good evening and welcome to the support network Marcia! We are so happy that you are here❣️ I share the same valve with both you and Ambassador DN, as I had a repair to my mitral valve via open heart surgery. I celebrated my 5 year anniversary this last June. While my road to recovery had many speed bumps, I echo Ambassador DN comments, in that, post surgery I too felt increased stamina, less short of breath, and overall difference in quality of life. One thing I learned on my journey, is that every “body” is different in terms of their recovery. 

    My fellow Ambassador DN has provided you with overall, great pearls of wisdom. I concur with her recommendation to enroll in cardiac rehab. That will not only increase your confidence as you continue your recovery process, it will also provide you with an in person support group among your fellow patients. I was strongly encouraged by the nurses in my cardiac rehab classes when things weren’t so smooth sailing and that made a huge difference for me. 

    Lastly, I would also like to emphasize the importance of being your own Advocate.  If something isn’t clear, or you wish to get a second opinion, by all means, do so. You have to be 100 comfortable with your cardiac team and the trust you have by putting your heart, quite literally in their hands. Katie provided you with a link to the valve education center that provides references to what to expect with surgery. Also, as Ambasaador DN referenced, I composed a list of tips and tricks that can assist you with preparations both pre and post op as you initially inquired. I invite you to review and please feel free to reach out to us, as you have found a community of heart warriors that will be yiur strength for the journey ahead. 

    Keep on fighting with heart❣️

     

     

  • Marcia1111
    Marcia1111, November 15,  2018  10:37am EST

    Thank you so much for taking the time to educate me and share your stories. It’s helped me shift my focus from worry to healing. Good health and continued blessings to all of you ♥️

  • AmbassadorDN
    AmbassadorDN, November 15,  2018  10:40am EST

    Marcia,

    I completely understand what it's like to have lived with a high-functioning alcoholic--my stepdad was one. Hugs to you from Warm CA! However, knowing that you will need assistance with activities of daily living for a while after surgery, you may want to consider looking into a home health care nurse who can assist you with bathing, medications, meal prep, etc. My husband and I looked into one before my most recent surgery last year since he wasn't sure if his work would approve his request for family leave (his job did approve it, and he stayed with me for 6 weeks after surgery). I am aware--and since I don't know what state you're in, so I don't know if this would work in your case--that most medical insurances do cover home health aides/nurses. Also, most hospitals have a protocol in which a social worker will come see you to make sure you have help once you get home. Take advantage of that, if possible.

    Like you, I really don't like asking for help, but don't be afraid to reach out. True friends will be there for you. Even my best friend who is a stay-at-home mom with three teenagers stayed with me every day in the hospital and visited me frequently after my husband went back to work so I wouldn't be alone so much. Also, if your daughter is mature enough, ask her to help. I'm sure she'd be happy to help out her mom with some things.

    Please keep us posted and let us know if you have any other questions, concerns, or even frustrations!

    To Heart and Soul Health,

    Ambassador DN

  • Marcia1111
    Marcia1111, November 19,  2018  9:16am EST

    Thank you Ambassador DN!

    Tomorrow is the catheterization. My daughter wants to come but I’m afraid they won’t let her stay without adult supervision. She’s very mature. We’ve been joking since she was 5 that should could run a small business!

    I’m starting to pack a bag for the hospital but I’m not sure what to bring. I don’t know how long I’ll be there.

    What did did you bring to the hospital or what do you wish you would have brought?

    The first thing I packed was my iPad, ear buds, charger, a change of clothes, lip balm and body creme. I may pick up a cozy robe and fluffy long socks today. I’m constantly cold because of poor circulation.

    Also, how should I wear my hair? It falls mid back and is super curly as I am of Latina descent.  

    Thank you again for your advice and support!

    M

  • AmbassadorDN
    AmbassadorDN, November 19,  2018  1:45pm EST

    Best wishes for a successful cath! The first time I had a cardiac catheterization, I was freaked out. My cardiologist had to give me an extra sedative to help calm my nerves. I've had ten others (don't ask--I've had a series of cardiac "misadventures" over the past 12 years), and it's become old hat.

    Regarding your hair--do you have one of those hair coils that looks like a wrist coil for your keys? Those work amazing for curly hair. Up until last year, I had long-ish hair that was naturally wavy but I often straightened it. Whenever I wore my hair natural, on the advice of my hairdresser, I wore my hair in a coil (I attached a picture) to bed so my hair wouldn't get all weird and flattened. 

    Your stay in the hospital after your cath should only be a few hours or perhaps overnight, depending on what time you have the procedure. You won't be able to drive yourself home, so make sure you have someone come get you. You'll also need to lie flat and keep your leg straight for at least 6 hours after the cath (the leg that they use to access) so your femoral artery/vein can close and to prevent clotting. Don't be afraid to ask for a bed pan after the procedure because all the fluid will make you want to pee like a racehorse! An iPad is a great idea to keep you occupied!  Also, check with the hospital to see if your daughter can come. Every hospital has different policies about kids--some won't let kids under 10 visit patients, or under 14, etc. It all depends. 

    Now for your surgery, you could be in  the hospital anywhere between 3-8 days or more, depending on how invasively your surgeon goes in, if you have a repair or replacement. By the way, have you discussed what type of valve you might be receiving? Because you're still considered young at 42, a mechanical might be the best way to go if the surgeon is unable to repair your valve. When I had my valve repair in 2006, I was in the hospital 3 days because I had a minimally invasive surgery. When I had a tissue valve replacement in 2016, I was in the hospital 3 days because I also had a minimally invasive surgery, but when I had my most recent replacement in 2017, I was in the hospital 8 days because mechanical valves require an anticoagulation medication (lifelong!) and the doctors and nurses had to make sure my blood was thin enough and within range before I was allowed to go home. I take Coumadin every day. Ignore the myths about Coumadin--as long as you eat healthfully and manage your dosing, you should be fine. https://www.heart.org/en/health-topics/arrhythmia/prevention--treatment-of-arrhythmia/a-patients-guide-to-taking-warfarin

    The above link is about treating arrythmia, but the info about taking Coumadin is still relevant.

    For your post-surgery hospital stay, you probably won't be allowed to wear your own nightgown or PJs, but a robe should be fine. Usually they'll give you socks with treading on them so you can walk around the halls without fear of tripping. As far as what I brought last time, I brought micellar water to clean my face since I couldn't wash my face, and my skin gets oily. I wish I'd brought something to fix my hair with, so that's where the coil comes in to keep your curly hair off your face without getting it all tangled. I can't think of anything else at the time, but I will tell you that the iPad was so great to have so I could be on Facebook and watch videos!

    Let us know if you have any other questions or concerns, and let us know how the cath goes!

    Best,

    Ambassador DN

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