Tom's Journal

Grace Mason   Happy 5th! Reflecting on the updates sent to your wife during your surgery is kinda like Cliff notes of the beginning of your journey ❤️

Sue Maize  Thanks for checking in Tom—it’s great hearing from those who’ve put a bit of mileage on their new valves, ☺️ that’s the true test. Very good point about the ticking, a great perspective on it! My surgery is this Monday, hard to believe when it seemed to be forever coming. All the best. 

Tom McDonald  Sue, you can do this. We are stronger spiritually and mentally than we realize. Remember God never lets any of us facing  this journey, walk it alone. I will keep you in my thoughts, and say a prayer for you and your surgical team, on a successful surgery and speedy recovery. My best advice is.... to start walking as soon as you are able in the hospital, that is your ticket out. Everyday will get better a little at a time. Remember baby steps don't rush it. Keep us posted when you can. Good Luck!  

Tim Carpenter   Hi Tom my name is Tim carpenter I have the same issues with my heat as you did. I was just wondering did they give you a choice or was the on x it. I’m 56 and not sure I want blood thinners the rest of my life that is why I’m asking  thanks Tim 

Tom McDonald  Tim Carpenter:  A mechanical valve (ONX) was really the only option due to my age.  I was 53 at the time.  I did talk it over with my cardiologist and surgeon.  They both recommended the ONX because a tissue valve usually only lasts 10-15 years.  This would result in several surgeries over my lifetime.  I only wanted to do this ONE time.  I also had severe calcification, which also played a part in my decision.  Tissue valves can calcify and the ONX is made of pyrolytic carbon.  The ONX will last for my lifetime, so they told me. Everyone's situation is different.  You should really have the discussion with your cardiologist and/or surgeon to discuss pros/cons.  Taking Warfarin is not bad.  You don't really need to 'change' what you do, they will dose around your diet.  You just need to be consistent with diet and moderation with alcohol.  My cardiologist gave an example of:  It's not like Weight Watchers - saving up for the weekend - If you're going to drink alcohol it has to be in moderation; not save up and drink a lot on the weekend.  Same with vitamin K rich foods.   Hope this helps you.  

Sue Maize  Thank you Tom—I had my pre-op day today so your encouraging message was very timely! ❤️‍🩹🙌🏻

Mike Roskowinski  Hey Tom.... This would be awesome to get us back to life again. I know this break has been somewhat nice but I miss real life and time with friends and other family members.

Mike Roskowinski  Thanks for the update my fellow Minnesotan. Keep up with the recovery we are so far along and doing great! Pochettino and his team are amazing!

Joey Hardee  I can already tell I am gonna have a disdain for the chest tubes. :-) Glad he got those things out. Making progress! Keep working, Tom! Getting better!

Rose Madura  I vividly remember removal of pacemaker wires and chest tubes. Not fun! But once they are out, you do feel much better!

Rob Sparling  Congrats to Tom, Kelly! On the right path! “In the direction of goodness.”

Joey, the chest tubes are your friend and nasty all at the same time. Without them my respirator exercises were much more fruitful. Walking with the tubes was a bit more of a hassle, but it’s only a couple/few days. A hurdle, but a necessary one and once jumped, the pace of recovery picks up.

Michael Greco  We just found out about the external pacemaker after surgery, which was not a thing done 17 years ago when Mike had his most recent cardiac surgery. Mike was not excited about it... Glad Tom is doing so well his came off already! Every step brings him a little closer to that full recovery!

Mike Roskowinski  Awesome to hear about Tom. Getting all those tubes and wires removed was not fun and such a weird feeling. Glad that it is really quick getting everything out of you. Sounds like Tom should be going home soon. Hope he is getting used to the new ticker. It was hard at first to hear it but you get used to it. Congrats on the great progress.

Joey Hardee  Thank you for the update, Kelly. Great news to get out of ICU. Great progress. Continuing to pray for Tom, you and the med team.

Michael Greco  This is Andrea. We’re very happy to hear Tom’s doing so well, as we prepare for Mike’s surgery on Monday. Hope his recovery will be just as uneventful! Good luck springing Tom out of ICU today. Will you be the getaway driver?

Susan Lynn  Kelly - Thank you for the updates. It sounds like Tom is doing great. Don't forget to take care of yourself - you're probably getting less restful sleep and none of the good drugs that he is! 😉
I can't express how grateful we heart warriors are for our caregivers! You and Tom are going through surgery and recovery in your own ways and sharing the success of every milestone. It's a team effort! All the best to you, both! ❤

Mike Roskowinski  Thanks Kelly for the update. I was in step down unit 5D and they were all great there. You guys will like the nurses there.

Mava Reif  Thanks for the updates! We all remember how strange and unreal those first few days & weeks feel! Quite a Rollercoaster ride. God bless you both in this new adventure together. 👍🙏

Mike Roskowinski  Awesome news Kelly. So glad to hear that Tom is out and on the recovery side. Pochettino is a great surgeon and I am sure that he will take awesome care of you guys. Nurses and everyone there were amazing and great to have. Congrats to Tom so happy he is done.

Karin Carter  Hi all I'm Karin I turned 65 this past SundY(25) a d I'm32 days post surgery and I am doing GREAT. I had a double valve replacement and a repair.I live in South Georgia and had my surgery done at Phoebe Putney in Albany Georgia. My surgeon was Frances Herrbolt,I'm new to this site and by the way I may have to have a permanent pacemaker put in around the middle of next month,has anyone else had to have a permanent pacemaker to control there heart rate

Mike Roskowinski  Hey Tom you got this my man. See you on the recovery side. You are in really good hands so no worries. We share the same surgeon so I know you will do great.

Mike Roskowinski  Hey Tom I read that also a few days ago. I eat fruit daily and blueberries are one of my favorite. I have grown up eating blueberries. Love muffins, pancakes and blueberry pie. Hope things are well for you in Rochester. I am sure your anxiety is on the high side right now but you will do great. If you see Pochettino ask him if he remembers me. I am sure they all do since I spent a long time there and talked to all of them so much. You are in good hands and everything will be just fine. Make sure you go to Newts and get a burger they are delicious there. I pray for a great surgery and quick recovery for you. As you go in for surgery I will be starting cardio rehab. All the nurses are awesome there. Yeah they wake you in the middle of the night to take vitals and check stuff but they are all great. Only thing I recommend is that you get your own food brought in. I ate two meals there and swear I have PTSD when I think about them. Food was not good so I had my wife stock me up on stuff to keep in the freezer and fridge. Good luck and Godspeed we are waiting for you to get on the recovery side!!

Tom McDonald  Thanks Mike for the info, Continued success in your recovery! Blueberries are one of my favorite berries also.

Civita Fahey  I've been having blueberries with my oatmeal for years. I truly feel its one of the reasons, I never get colds!

Susan Lynn  Kelly - That's beautiful. Tom will surely find it inspiring. You will get through this together. We'll be keeping you both in our thoughts and prayers! ❤

Susan Lynn  This is the time it starts to feel real, but you're going to be on your way home before you know it! We look forward to welcoming you to recovery!

Rob Sparling  Knock down every putt! Every test and every needle is just part of the process! High fives every time you meet a new member of your team and get over one more hurdle! 👍

Scott Ainsworth  All the very best Tom, relax and rest up as much as you can this week, it will serve you well on the other side of your operation. Looking forward to some awesome updates! God Bless

Mike Roskowinski  Tom you got this man. Enjoy the last few days before you go in for surgery. You will do great and be in recovery with us soon. The team you have is great and will take good care of you.

Tom McDonald  Thank you!
Scott, Mike, Peter, and Joy, I hope your recoveries are going great and continue. I will be there soon!

Susan Lynn  Tom - The last week can be a rush of emotion. The countdown begins, but you'll be ready to go by game day next week. You're prepared. You've got this!

Dan Baltazor  You're doing great. Focus on the recovery side. Continued Peace to you this week knowing so many of us got through this and you will too.

Rob Sparling  Tom, keep busy and the schedule and prep will keep your mind in the right place. Stay positive — high fives all around for your team all day and every day — then buckle in, pray hard and take the “faith fall”. You will do great (and so will they!).

Mike Roskowinski  Hey Tom. You will do great the team at the Mayo was prepared for everything that happened to me. It can be overwhelming at first but just listen to them and be patient. All the nurses are great and will help you through the process. Make sure you beg for ice chips cause you will really want it. Pochettino knows me by name so when you see him tell him I said hi. He is there everyday checking on everyone in the mornings and doing updates. I spent two weeks there and was moved to 3 different rooms because of my situations. I will do a full scale write up of my two weeks when I decide to sit at the computer. Feeling way better today and everyday since the surgery. Good luck you are in great hands there. Trust me I met a lot of people.

Ron Weaver  I can only imagine your anxiety. I don’t even have a surgery date and I have a mini panic attack when I think about it. Hang in there. I’ll be sending good thoughts your way.

Lena Afanaseva  Please don’t worry much! Waiting is the worst, but trust me! They know what they doing! Wish u a quick recovery!

Darren Ketchley  It is without doubt a very frightening thing to face and recovery is a day by day thing. Nothing prepares you for the event and the main thing is everything you experience the fear anxiety tears are what we have been through so just know you are not alone. Wish you all the best and a fast recovery.

Joey Hardee  Right behind you, Tom. I am definitely "feeling it" on the horizon. Hard to keep it off my mind when I am doing something in preparation every day. We are going to be better after surgery. I am running a 5K in November. Can't do that without this step in the process. You're gonna do great and be better for it, Tom!

Marie Myers  I know that feeling of preop anxiety and worry, because I had it too. Wish I knew then what I know now...you will get through it all! Your medical team does this everyday , and you have to have faith. Wishing you peace in your preop wait!

Heidi Rockwood  Tom, We share the same surgery date now-June 5th is going to be a good day and we will get through this! The waiting is very hard, and I’m having a very hard time focusing! I’m 54 and leaning toward the tissue valve. What was the deciding factor for your choice?

Tom McDonald  Heidi,
both my cardiologist and surgeon recommended mechanical b/c of my young age of 53. The "ON-X "valve takes a lower dose of blood thinner. I will learn to adapt. I only want to go through this OHS once. My CTA scan on my January 2019 visit showed a possible blockage in my coronary artery. A pre op heart cath along with some other test on June 3rd will determine if that will need to be addressed during surgery. Stay tuned! Another reason OHS is the only option for me vs a tavr procedure. I'm hoping after surgery,
and once recovered, my energy levels increase so I can do the activities I love without feeling exhausted. All the best in your journey, your in my thoughts and prayers. Peace and good vibes to you! We will get through this

Dan Baltazor  It's tough waiting!!! Make plans with the ones you love to help you pass the time. Prayers for Peace for you.

GARY STANKO  I just happened to stumble on your story. We have a couple of things in common. I am also a bike rider. I did 14 today. Not riding as much as I did before surgery. I do think the riding helped my condition. It was very overwhelming for myself as I had to push my doctor into looking into why I was feeling the intermittent fatigue when riding. I was thinking it was my age and just pushing thru it. This was in 2017, I was 67. Turned out I had severe mitral valve reguritation. I went to Mayo in Rochester. They repaired my valve and I haven't had any issues since. The nursing care was awesome. I'm in Kansas, I feel like going to Mayo gave me the best possible outcome. They'll take good care of you.

Oh and the recliner, I bought one too thinking I would be sleeping in it awhile. Didn't happen. The bedrooms are all upstairs but I walked the stairs twice a day, very slowly. It is a comfortable chair though!

Julie M  Prayers for you, Tom, that all goes well. Though I know the waiting is really hard, you'll be on the recovery side before you know it. God bless...

Mike Roskowinski  You got this Tom. We share the same surgeon and same hospital. I will let you know how it goes. Awesome to get stuff done and have some fun before all the recovery begins.

Naomi Gray  Good job with your bicycle rides, Tom! I wish I could have lost more weight before the surgery like you did. Well, it didn't happen to me. Once I stopped my skiing, seemed like I'm even getting fatter... I can't wait to replace my aortic valve, and start working out. But it might not hurt have some reserve until I can start eating regularly again.

Mike Roskowinski  Awesome Tom. Yeah I just got my dentist to sign off on my dental work. All set to go. Just some preop appointment on Thursday and then show time.

Joey Hardee  Glad you got the thumbs up, Tom! My surgery is 50 days out and the surgeon's office hasn't said anything regarding a dental health cert. I will go ahead and proactively make an appointment with my dentist though. What happens if you are 4 years post op and need a tooth extracted, root canal or other major dental work?

Bradley Dunn  That is awesome.. Before surgery for me I would average 10MPH.. I haven't really rode much post but not sure I could even reach 10 again.

Grats on your progress!

Mike Roskowinski  Hey Tom... Great thoughts and feelings expressed!! I know where you are coming from in all those feelings you expressed. We got this! I know you still have a little bit more time to wait till you get in there but just hang in there. Faith and positive thoughts will help you the most through all this. Happy birthday to you and keep going you will be in recovery very soon!

Tom McDonald  Thanks Mike,
I appreciate your encouragement. I'm praying for, and thinking of you often as your date gets closer. You are right we got this because the alternative is not good. Wishing you all the best for surgery and a speedy recovery.

Alan Jamieson  Trust in the process and try to stay positive. From everything that you've posted, you're in great hands, and you'll be on the recovery side and trucking past this soon enough! Stay strong Tom!

Mark Jaycox  Tom, Mike & Alan, I was in all your shoes 5 months ago. It's amazing how fast time flies on the recovery side. Two days before my surgery I had a prayer group sit down with me and my family at church and we prayed everything would go OK. It's amazing how comforting that felt and how relaxed I was leading up to the surgery. I trusted God would watch over me and my family and that's exactly what he did. Hang in there and looking forward to all your posts on the other side.

Civita Fahey  Have faith in your doctor and faith in the Lord. He will watch over you..the way I looked at was, he gave me a sign so this could be fixed and He will take care of me.. and He did. My prayers go out to you for a successful surgery and uneventful recovery.

Mike Roskowinski  Hey Tom that is some good news that you are ready to get in there. Sorry to hear you are a lot worse than you initially thought. At least you are in good hands and know what’s going on. I meet with that same surgeon on 4/5. Why did you wait till June or is that the soonest they had open? Looking forward to see your recovery.

Tom McDonald  Hi Mike,
Long day at Mayo. The CT scan was eye opening to see where the calcification is exactly on my aortic valve. I think you'll like that doc. I picked June b/c it just worked out better for my recovery time. Have a great vacay! Good luck at Mayo on 4/5 see you on the recovery side.

Mike Roskowinski  Ahh I see. I want to just go and get it done so I was glad to hear that they are not backed up that far. I bet it was a long day but now you have a date set and ready to plan. You will rock this. Maybe I will see you around there sometime.

Herb Greenberg  Tom, question: Did other tests (echo, MRI) show less of an issue? In other words, did your non-CT scans suggest things were better than the CT screamed they are? Or had those prior scans screamed to your cardiologist, "get thee to a surgeon?" Any symptoms?

Tom McDonald  Herb here is a overview of my aortic valve only, of the last three years I hope this answers your question/ concern. I would also add that my father died at 55 of heart attack , Coronary artery disease along with some unknown medical issues, which leads me to believe I may have some of those unknowns surfacing. I'll be 53 next month so this is quite concerning to me.
12/28/2016 Echo-bicuspid congenital aortic valve, which is calcified. The mean gradient across the valve is 34 mmHg. The peak velocity is 4.1 m/sec. Aortic valve area is 1.73 cm2. He has mild insufficiency of the valve.

02/02/2017 local cardiologist Referred me to the Mayo Clinic in Rochester MN and there review was- Transthoracic echo from December 15, 2016, was personally viewed. This shows a bicuspid aortic valve with fusion of the left and right cusps which are calcified with restricted mobility. The noncoronary cusp moves normally. The mean gradient is 34 mm Hg with a valve area of 1.73 cm2.

02/07/2018 Echo- Transthoracic echo shows a bicuspid valve with fusion of right and left cusps, marked calcification of the fused cusp. There is moderate stenosis with a mean gradient of 36 mm Hg and a valve area by Doppler of 1.57 cm2. There is mild regurgitation.

01/03/2019- Transthoracic echo shows a bicuspid valve with fusion of the right and left cusps. The fused cusp is markedly calcified with limited mobility. The mean gradient is 44 mmHg, valve area by Doppler is 1.46 centimeter squared. There is mild regurgitation.

03/18/2019 - CTA was performed just prior to our appointment. Final interpretation is not available but I did review the images with the patient. This shows a heavily calcified bicuspid aortic valve. There is mild dilatation of the aortic root measuring 39 mm and the mid ascending aorta measures40 mm. There is mixed calcified and noncalcified plaque in all three coronary vessels. There does not appear to be any significant LAD obstruction.

John Isham  Heart Warrior Prayers are with you and your family tomorrow and all the days that follow tomorrow. All will be fine.....You are in Great Hands at the Mayo Clinic!!

Mike Roskowinski  Hey Tom you are going to be in great shape at the Mayo. Yeah this is all a little anxious for us but these surgeries happen so often. Look at Chris and all these others on here that made it through and are rocking their recovery. Our families prayers are with you through this but I have faith that we are all going to make it through and be just fine. Good luck though

Susan Lynn  All the best to you and Kelly tomorrow! Think positive thoughts! We'll be here to wait with you, or walk with you down whatever path is ahead. You're never alone on this site. Safe travels.

Kevin Stevens  Hey Tom, easy to be anxious so just share what you’re feeling, the nurses are great at keeping you confident. It’s uncharted territory for you but sounds like you are ready.
When you get home and anything worries you, get on the phone and let your doctors know.

Christopher May  Tom, this is the hardest part, the waiting and the unknown. You’re in excellent hands at one of the best places you could be in the world. I’ll be thinking of you tomorrow!

Rob Sparling  Me too! Thinking of you and know you are in great hands. And yes, it is hard not knowing and having to wait. Use the time to map out “the plan”!

Dan Baltazor  Tom these next few steps you'll take here as you approach your surgery can be difficult at times. I totally know about all the anxiety and anticipation. You WILL get through this and before you know it you WILL be on the other side of it. We are praying for both of you. One day at a time my heart brother.

Dan Vechiola  Keep marching forward Tom and you can be confident whichever road you must take that it will all work out. They have come so far in this area and many of us here are living proof. Hang in there brother and know that we all have your back and will provide the strength and support you will need.

Mike Roskowinski  Hey Tom let me know how it goes. I have an appointment at the Mayo also on April 4th. My one surgeon wants me to get surgery in April and I am ready to but I would love to have it done at the Mayo since they are one of the best hospitals in the world

Rob Sparling  You guys can be wingmen for each other. Positivity and support will make you both unstoppable. Believe it. Make it happen. Take control of this and stare this thing in the eye and don’t flinch.

Dan Baltazor  Hey Tom. Adam's book did help me with some of the anxiety. The days before surgery can be a roller coaster at times, but just take it one day at a time. Keeping busy does help. I'm praying for you and sending you positive vibes.

John Morales  Tom you are not alone I have my date of Feb 20th and am petrified im trying to stay positive and take comfort form all out heart warriors who have gone before us we can do this , we have no other choice all the best.

Rich Krakowski  Hang in there guys. We were all in the same position. Then you have the surgery, 6 months goes by and it will just be a blip

Bob Fessler  Believe me, it is not as bad as you imagine. The pain at the hospital was totally contained. All is well for me and it will be for you.

Tom McDonald  Thank you all for the words of encouragement. I really need that right now. I'm just very overwhelmed with everthing ahead of me. Can I ask anyone who is willing to comment, what specific questions should I be asking my potential surgeon?

Judy S  You should find out the number of surgeries like yours that he/she has performed and what then outcomes were. You should also check outcomes at the sts.org website (Society of Thoracic Surgeons). You want to find out what experience he has with bicuspid aortic valve replacement—is there an option for repair vs Replacement? While you indicate mechanical would be the solution, that would mean you would be on permanent blood thinners. There’s a new tissue valve that is supposed to last longer. Find out about that option. See also what the size of the valve would be so that later you could have a TAVR replacement option. Will he be be taking care of you post surgery? After all those questions are answered, you’ll get a sense if this is a person you feel comfortable and can trust. In the end, that will give you piece of mind.

Civita Fahey  Tom, what you are feeling is very normal and we were all there once. I know its hard to feel now that you will be fine, because before I had my surgery, I appreciated all the wonderful words of encouragement I got from everyone here, but then at times I would start thinking, what if I'm the 1% that doesn't survive, and what if this or that happens? the stress and anxiety that I had before surgery was probably the worst I've had in my life, but as Judy said, ask all the questions she suggested and then anything else that matters to you, I wanted to know if I could get back to my normal exercise routine and could I be "normal" at 56 again. Talking to your surgeon will put you at ease, they have done this type of surgery for over 50 years and to them its routine.. they do many per day.. the hospital staff will also put you at ease when you have your pre op, they are caring and understanding of your anxiety and fear. OHS is no walk in the park, but it was so much less than my imagination feared. I personally had no pain, just exhaustion for a few weeks, and then got tired easily, for a while. But remember think positively, try some motivational tapes and you will get through this. I looked at it this way, if the Lord wanted something to happen to me, he wouldn't have give n me the opportunity to fix it.. my prayers go out to you.. but you go this.

Dan Baltazor  It's a very emotional hard walk. I felt so much better after the first meeting with my surgeon. I'm praying the same for you.
https://www.heart-valve-surgery.com/heart-surgery-blog/2016/12/18/questions-before-dr-accola/

Rob Sparling  Tom, you are normal. You are working to own your future, start by owning the date that becomes the tipping point for all things. I was on the phone with my surgeon’s scheduling nurse and she had me all teed up for an October procedure when she asked “can I put you on hold, I may have an opening in September”. I was petrified but took it and it was the best decision of my life. (Besides marrying my wife.) Walk into this knowing you can infect people and your surgical team with optimism, take stock of their skills and merge the two forces while praying your ass off. (We will be doing the same!)

Louanna Miller  Learning you need OHS is alarming. We’ve all been there and have walked the path on which you find yourself. We have made it to the other side of recovery and you will too. I managed my apprehension by learning as much as I could about my heart, surgery and recovery. I researched hospitals and surgeons. I wanted to be informed. I found peace and comfort knowing that others have had the same experience and were doing much better. Find things that are comforting to you and bring you peace of mind. We are here to encourage you and share our experiences. Ask questions and learn from all of us. You’ve got this!!

Marie Myers  Yes, I remember the overwhelming news that I needed open heart surgery.
This was a very helpful site for me, and I am sure you will get a lot of good info also.
Just take it one day at a time and you will make it through!

Meredith Bray  Welcome to the site! My BAV was discovered in 2003 and surgery was in 2014. I was 43, and got a mechanical valve. The anticipation of surgery is awful, I never want to go through that again. (You'll actually sleep through the surgery itself though-haha!) And the recovery won't be even half as awful as you think it will.And the more you talk to people, the more people you meet who have had heart surgery or spouses or parent or child or neighbor has had heart surgery. This is a great place to get insight about the process. I hope you ask lots of questions!

Meredith
Holiday, FL

Kathy Blank  Tom- I had time to plan and prepare just like you do. The initial shock - it took me about 1 month to start taking action and move to research and preparation. Besides connecting with this amazing heart community and the resources available- The thing that brought me the most comfort and peace was consulting with several surgeons to find the best possible expert for my specific valve issue- Consulting w the surgeon early in the process can answer many questions and help you avoid unnessary tests and procedures in preparation. Also- seek out some heart warriors who have your same heart valve issue and they will be your most valuable sources of inspiration! While we may wish we didn’t have our heart valve issue- belonging to this community will help you move from fear to the path of health and healing with many other heart brothers and sisters❤️

Dan Baltazor  Hi Tom. Welcome! I had my BAV replaced 11/12/18. I'm 44 years old. I'm doing really good on the recovery side and so will you. This site is amazing and you will find so much inspiration from ALL the Heart Warriors here.

Vicki Zimbric  I know how much there is to grasp. I had my Mitral Valve repair 2 weeks ago and I’m still trying to digest ‘what have I got myself into’?!!

Rob Sparling  Tom, I was 50 years old with a bicuspid aortic valve. I’ve since upgraded. Please read my journal and scroll back to Sept 24-26th specifically. See my post in the surgeon section for Dr Gosta Pettersson. No matter what you choose you will be living a full and new life if you and your team are aligned and prepared! Don’t be afraid. Be resolute! Stare this down and get ready to extend your life! ❤️💪