Layli's Journal

Rose Madura  Hi Layli. I didn't get a mechanical valve so can't help with your questions/concerns.  There are many on this site who are on warfarin and do not have issues ince the INR gets regulated. Hopefully some others will chime in soon.

Mike Tirrell  Hi Layli, I have an On-x mechanical aortic valve.  I manage my INR between 1.5 and 2.0.  I am about 9.5 months out from surgery now and pretty much do everything I used to do with no issues.  I manage my INR myself with a home monitor kit with no issues and don't really need to watch what I am eating.  Hope that helps.

Brody Sheffer  Hi Layli. I had my mitral valve replaced in Nov 2021 with a mechanical valve. Like you I had been taking blood thinners for AFIB prior to the surgery. Being on warfarin has not been an issue so far. My INR tends to run a little low but now I am on the appropriate dosage. I have not had to change anything with my life so far and am feeling great. I did have a hard time recovering from the surgery because I unfortunately had a stroke that was caused by the heparin that they provided during the procedure. Otherwise recovery went very well and I have had no other slip-ups. I wish you the best during your procedure. 

Miriam Alejos  Hello, I just had my mitral valve replaced with a mechanical one. My surgeon thought it would be the best route to take being that I am 37 and he wanted something that would last longer. He did a full sternotomy and I am recovering well. I'd be lying if I said it was easy as that is not the case but once you are on the recovery side you've done the hardest part which is to wait anxiously for your surgery day. Recovery takes time but just remember take it one day at a time and don't push yourself to hard. Keeping you in my prayers 🙏  

Layli Ericks  Hello dear Miriam, thank you so much for your response! I see that you were operated a month ago! wow! How are you feeling? I am also being recommended a mechanical valve and I am trying to decide in what is the best course for me. I am worried about things that probably I shouldn't worry about such as the sound that it makes and of course the stronger blood thinner. We are blessed to be able to be given this chance to continue with our lives. I am so happy that you are home with your family. I pray that your recovery continues very well! Sending you love and light!!

Susan Lynn  Layli - Are you sure you need a replacement? More than 90% of mitral valves are repaired by experienced heart surgeons. I had a repair at 57 and likely would have chosen a mechanical valve if I had to choose before surgery, however, after I actually experienced heart surgery, I would do it all over again in 10 years and select a bio valve. There are some life style changes and risks associated with continuous blood thinners. It is a big decision. Make the right choice for you. Good luck!

Layli Ericks  Hi Susan. Thank you so much for your message. The situation is that they don't repair my type of Barrows here in Costa Rica. Barrows is highly unusual in latinamerica. I am half costarican and half American. I am truly trying to make the right decision. The thought of hopefully having to do this only once in my life seems a strong one. I am taking blood thinners for an arrhythmia already but it's not warfarin. I just want to be sure of my decision so that I can walk into it trusting and healing. I am not there yet. How long is the prognosis for your Barrow's repair to last? Once repaired is it usually like that for life? Thank you!

Susan Lynn  Layli - I was adamant about getting surgery only one time. My surgeon was so confident he could give me a lifetime repair, he didn't even ask me to select a bio or mechanical valve as a backup. I still don't have any leakage after 4 1/2 years. I realize that the expertise for Barlow's repairs may not be available in Costa Rica, but you're only going to get one chance to make this decision. Many people travel for surgery and there may be a way to figure out the financial piece if you come to the US. They're both valid concerns. In addition, your arrhythmia may be resolved with the right surgeon. Depending on the kind you have, some surgeons opt to address it with an ablation procedure at the same time as the surgery. Make the decision that's right for you. I encourage you to think beyond the most convenient choice and do some additional research. Best of luck to you.

Dolly Makkar  Hi Layli, I had my mitral valve replaced with a mechanical one 3 months back. I did not want to go through an open heart surgery again so I decided to go with the mechanical one. Like you I was very confused and anxious about my choice but lots of great people in this group made it easier for me. Some of them had been on warfarin for more than 25 years with no problem at all. After 3 months now I’ve adjusted well to warfarin and my recovery has been going very well. Talking to long time heart warriors on warfarin was very helpful for me to ease my mind. Good luck 💕

Ana Brusso  Hello Layli, sorry I missed your post back in February but welcome anyways. There are lots of mitral valve warriors on this site and hope some will chime in to give you their prospective. I had a different valve replaced but I do know we all go pretty much through the same things. I wish you the best for your upcoming surgery and will pray for everything to go well and you recover smoothly. God bless you and your children. You will be fine and please keep us posted. 🙏❤️

Peter Eglinton  Sending positive and supportive thoughts your way. Although heart surgery can be scary, realizing that doctors do these surgeries often can help. I found that support from friends, family, and former patients, as well as meditation, made a big difference. Take care and hang in there!

Layli Ericks  Ana and Peter, thank you so very, very much. I would like to have gotten my valve repaired and really considered reaching out to a specialist in repair in the United States but unfortunately I have no medical Insurance and am also worried about the logistics of getting operated there and then healing and flying back and then the post operation check ups. The doctors here recommend replacing my valve because I have Barrow's Syndrome (apparently I have a type of heart that is found more in Eastern Europeans and not latinamericans). I am worried about feeling fear and feeling pain. Little scared of the ICU... how I'm going to feel afterwards and for how long. Do you have any specific recommendations that helped you in your recovery or preparation? Thank you again and God bless you!

Ana Brusso  Layli, for my surgery I prepared meals in advanced and froze them so I would not have to worry about cooking. Keep the things you use the most at a level where you don’t have to raise your arms to reach far. If you have people to help it’s a blessing. Taking a shower you should have someone nearby to help you if you need it. Sleep is going to be difficult the first few days but use a wedge or a few pillows to keep you almost seating while in bed of if you have a recliner you might want to use it. Try to walk as soon as you can as that keeps your lungs functioning better. Make sure your surgery team is available by phone if anything arises. In my case I pray and pray and pray some more. God bless you 

Rose Madura  Hi Layli. I'm sorry you have to go through this. I know it's scary but sometimes I think worrying is the worst part from the emotional side of things. I won't say I didn't have any pain but the pain is not all that bad. Ana gave you good tips. One thing that was good for me was taking a gr travel pillow to the hospital. And I'm sure your wonderful kids will help you as well. Prayer helped me as well. Godspeed.

Layli Ericks  Ana and Rose, thank you both so much. Thank you for the wonderful tips! I was also nervous because my bedroom is downstairs but my doctor said that stairs will be good for me. My beautiful mother lives near me and God willing she will be with me. I am having surgery in the Social Security Hospital of Costa Rica and the doctor said that for a month doctors come to your home to check on you to see your progress. It is a real blessing I know. My kids are not that young (11, 14) but I worry about this being scary or traumatic for them when they see me come home. They will be living with their dad at his home until I feel well enough. I have always thought that I had a strange bed because it can be put into a sitting position... I see now why I was meant to have this bed and I am soooo glad that I didn't sell it after my marriage ended. Everything has a reason. There are so many things that I am scared about with this process. I am trying to look at each thing and write a positive thought about it. It has been so reassuring to read people's comments to other people about how you take a nap and then you wake up and it is done and you begin healing. I'm scared of possibly panicking when I wake up as I have been taking medicine for panic attacks since I found that I needed surgery. I worry about the pain being too much and about somehow not having the emotional fortitude to go through this. I know that this is not true. I know that I am strong and that I've been through a lot in my life to prepare me for this moment. I pray and pray and pray to our Beautiful God and Guardian angels and I Meditate a lot. Learning to have Faith and Trust in God has been my life's struggle over and over.... when will I finally learn to trust in God? Today is the day. I will take my favorite pillow and make sure to have plenty of food. Thank you so much for your love. Sending you Love and Light!

Patsy Stewart  Layli, hold onto that calmness you mentioned earlier. It seems like I was more aware of the fatigue than I was of the pain. 
Everyone has offered some helpful tips. I’ll add that button up pajamas with loose fitting bottoms were easier for me after I came home. You won’t be able to lift your arms above your head for a few days and you also don’t want to be tugging to pull your bottoms up. I always add chapstick, fingernail clippers and whatever little necessities  that would make you feel at ease. Braiding my hair kept it out of my and their way. A small drop cord was very useful and don’t forget your phone charger. ICU isn’t anything to fear. You are assigned to a nurse and they keep a close eye on you. Sending love and good thoughts to you and your family. ~❤️

Layli Ericks  Thank you so much Patsy. Those are all great tips. I will have my hair in a braid and go and buy some button pajamas! What is the small drop cord? And yes, I am quite afraid of the ICU for some reason. This is helping my children feel calmer as well hearing these comments. Thank you so much!

Patsy Stewart  A small drop cord is the same as an extension cord. You can plug it into their electric receptacle and use it to plug in your phone if their electrical plugin/receptacle is too far from you to be in a comfortable reaching distance. I use mine almost every trip I make to the hospital. The ICU nurses are very kind and attentive and will help you with anything you need. Sending lots of prayers your way.~❤️

Susan Lynn  Layli- I also had Barlow's disease with a thick, flailing valve. I had a minimally invasive repair of the valve and chords and virtually no pain afterward. Did you consult with more than one surgeon in Costa Rica? Multiple opinions can often vary. Good luck!

Richard Munson  Probably not a lot of choices in costa rica. That is one of the bonuses of living in the greatest country on earth. Hope it stays that way for my kids and grandkids.

Timothy Andre  Layli, I have no doubt that you will do great. You are a woman of God and he has a plan for you. It's time to relax and trust in him and trust in your surgeon and his/her team. Yes, you get to nap while your team does all the work. The ICU is not scary, it's nice to know that they are watching you every second after surgery and you will get the best care possible. I trusted in the process but my fears were all the unknowns after surgery. Now that I'm 24 days post surgery I realize it wasn't necessary to pre-worry about anything. It's so important to just take things one day at a time and deal with things as they arise with a strong mind. You will do great and you have so many people that love you and care for you. Hopefully your mother will care for you post surgery just as my mother did. There is nothing like the love of a mother. Something you know very well with two of your own children. I wish you all the best and look forward to recovery updates from you. God bless you

Layli Ericks  Thank you Susan Lynn. I did consult with the best surgeons in Costa Rica and they recommend replacing the valve. Thankfully, they are the ones that will be doing the operation. It has been a hard decision. I am praying for trust. I can only hope that I am making the right decision.

Layli Ericks  Dear Timothy Andre, thank you so, so much. Your words brought tears of peace to my eyes. There are so many "what if's" and I just want to hand myself over to God and trust that everything is working as He wishes. Things are happening faster than I was expecting and I keep thinking, "what if" I am making the wrong decisions? Maybe I should be doing something else? My beautiful mother will be with me. I trust that my surgical team is amazing and I trust that God is taking care of me. I trust that I will make the right choice for me and that God will guide me to do that. After all, I am alive at this moment because of God's Will. What I ask for now is more Faith and Trust. God Bless you too!

Ana Brusso  Richard, I will again agree with you. We are bless to live here and the abundance of choices we have. Let’s teach our children and grandchildren to be smart when they vote and not let our country fall in the wrong hands. 🇺🇸🙏

Susan Lynn  You may find this article from Adam to be helpful. 

https://www.heart-valve-surgery.com/barlows-disease-syndrome-mitral.php

Dolly Makkar  Hi Layli, what helped me after surgery was to take it one day at a time. Just remember that the next day is going to be better than the last one. Be patient with yourself. Every single day will be bringing you closer to your normal routine. Good luck ! ❤️