Tonia's Journal

It's been a while since I posted anything...but all is well and I am busy busy busy :). It has been almost 9 weeks post op, and things are going pretty well. I am started to feel somewhat normal again. I had a follow up with the Cardiologist a few weeks ago and everything looked great! Had a normal echo, blood work was good and most of my limitations were lifted...Yay. I am back to work full time, and I never knew how tiring it would be still, even though physically I feel great! There are still days where I feel as if I am in a "fog" and just don't have ambition or energy to do anything....and I don't! Trying to rest as much as I can so I don't over do it, and so far that has worked out fine. I am sleeping a little better at night, now that I can comfortably sleep on my side, I never thought this day would come..LOL I have done quite a bit in the last 3 weeks, we traveled to Texas to see my brother get married....I learned how to make flower bouquets...well boutonnieres actually and was able to help with pre-wedding stuff, we spent lots of time at the pool so far, went camping with some friends and running my oldest around to basketball practices, so all in all we have been pretty busy...and it doesn't look like its going to slow down anytime soon. I am still battling the right meds for blood pressure. Mine seems to fluctuate so much because of my anxiety and I haven't figured out what it is when I am completely resting or calm....I go a million miles a minute and if I am not, my brain is...LOL it has been controllable, but still not where we need it to be. The cardiologist told me that I have an enlarged aorta, which was there pre-surgery and will always be there, we just have to watch to make sure it doesn't get any bigger. My BP will play a huge factor in that, so we are doing everything we can to keep the BP at a normal rate. I am even thinking about taking up Yoga to help get my mind off things. Anyone out there do yoga, has it helped you? I have lots of pictures to post, and I will post them a little later. I hope all my heart brothers and sisters are continuing to recover well. God Bless!

It's been 1 month today since my surgery. Overall recovery has been going very well for me...I had a few setbacks with blood pressure but that is under control now. I'm feeling good and finally started sleeping in my own bed!! It hasn't been the greatest nights sleep yet as I'm still trying to find my "spot"...but it's nice to be in my own bed rather than the recliner. The only complaint I have now is that I think I have a little more pain in my incision area than I did after surgery....most of the time when I get up and move around it feels as if my chest is ripping open😵...my incision area is healing beautifully but is still tender. I've been able to get out of the house quite a bit and have done well...I notice that I'm not quite as tired as I was even 2 weeks ago! It's nice to walk a little outside. Driving is still a NO NO...I thought I could drive the boys to school because it is less than a mile from our house...but it still hurts to turn the steering wheel. It's amazing to think back on this day a month ago and it's emotional to think where I was compared to where I am now. I'm so glad I made the decision to get fixed and feel better and start to live a healthy happy life. I know that not everyone story is the same, and I wish that everyone could have as successful recovery as I did. For those that are thinking about it....do it! You will be glad you did and everyday...every week...every month after surgery gets better and better. This is coming from someone who has never had a broken bone, stitches or been in the hospital for anything other than to have my boys...and my experience wasn't as horrifying as I made it out to be. Some days are better than others, but you take it day by day...and that's what I'm doing😊

Yesterday was 2 weeks since surgery. I can honestly say for me recovery hasn't been too bad. The first week at home was pretty good for the first few days...had some emotional roller coasters but overall had been good. The rest of the week has been a bit of a struggle...my blood pressure has been causing some issues with spiking too high. I almost made a trip to the ER but it came down...I've been on the phone with the Clinic almost everyday this week. I've had a headache for almost 10 days straight and I feel it has to do with my BP. Finally today we agreed that it was time to go back on all the meds I was taking before surgery, but I have to ease into them slowly. It sucks for me, because I feel as if I've been on bed rest for the last 3-4 days and it has been very frustrating and discouraging. Hopefully with the way we are spreading out the meds will help and I will start to feel better. I would like to take a walk outside or be able to go out and about because otherwise I'm feeling pretty good. I did go for my post op tests and everything is great!!! Heart is working much better than before, no issues with air in the lungs anymore....yay!!! So I'm ready to get back to feeling normal again. It's hard for me, but I know I have to take one day at a time. Thanks to everyone who has followed my journey and thinking about those heading into surgery. God Bless! Tonja

Wow...I can't believe it's been 1 week already!! This time last week I was sleeping off and on in the ICU and today I am home and relaxing and feeling pretty good! I am so thankful and glad that I decided to get a second opinion and chose to go to the Cleveland Clinic. I had been dreading surgery day and have been so scared for the last year thinking about all of this stuff. Someone who has never had a type of surgery or broken bones. My only time in the hospital was when I had my boys and that's it! So the emotions were on high alert for a very long time. I'm glad it's over so now I don't have to be scared and anxious anymore. I have had a positive experience with this entire process from surgery to recovery, thus far. I am very thankful for that!! Glad to be home with the family and my boys because I missed them so so much😊 I am very thankful for Adam Pick for creating this site for people to share store is and create a platform for support. This site and reading his book truly helped me through the process and the "unknowns". I also had a great surgical team and the best surgeon in the country (in my opinion). The team was outstanding and made me feel comfortable and pain free. The surgeon was able to repair instead of replace my valve and was extremely confident that the repair was the best option and that it would last a very long home and possibly my lifetime. I had an amazing support team through this entire journey, from family to friends, to co-workers and also from complete strangers. I truly wish that anyone experiencing oHS could have the same experience that I had. I know everyone is different and conditions and other factors play into their outcome. I just hope that you stay focused and positive and know that you are not alone in this. Yes it is scary, but it is also a wonderful feeling to be alive and fixed. Your body goes through something very traumatic, but the heart is truly strong and amazing! God Bless everyone and thank you all from the bottom of my heart for all of the support from sharing stories, to the continued encouragement and advice! Keep Ticking! Tonja

I've been home for 2 days now and overall doing great. I've had a headache since I've been home that I just can't seem to shake. It's not terrible. At first I thought it may just be a tension headache since I have been pretty stiff and trying to be extra careful. After 2 days of monitoring my BP is seems to be running 144/104 or 140/109. I struggled with HBP pre-surgery and after surgery and while in the hospital by BP was absolutely perfect! They changed my meds and cut them all waaaaay back. Did anyone else experience this? Is it normal for your BP to fluctuate like this? I already have a call into my doc to discuss this, but was curious if this is a normal thing.

I've been home for 2 days now and overall doing great. I've had a headache since I've been home that I just can't seem to shake. It's not terrible. At first I thought it may just be a tension headache since I have been pretty stiff and trying to be extra careful. After 2 days of monitoring my BP is seems to be running 144/104 or 140/109. I struggled with HBP pre-surgery and after surgery and while in the hospital by BP was absolutely perfect! They changed my meds and cut them all waaaaay back. Did anyone else experience this? Is it normal for your BP to fluctuate like this? I already have a call into my doc to discuss this, but was curious if this is a normal thing.

Finally got home about 7:30 yesterday evening!!! Yay...it was nice to be home, but very emotional and I'm not sure why. I just felt like I could cry at the drop of a hat. The 2 hour car ride home really did me in I think! I also did too much yesterday for rehab and I was beyond exhausted and tired. Trying to get comfortable wasn't an easy task and quite frustrating for me, but was finally able to get comfortable and get some sleep. Did anyone else seem to be emotional? It's not a sad type of emotion but hard to explain. It's as if I've reverted back to a toddler who can't communicate their feelings...lol My family especially my parents have been amazing through my recovery! I'm sure they are beyond exhausted but they have been there every minute! Trying to make myself take it easy is a hard task for a young mom who normally goes 1,000 miles a minute...that in itself is a big adjustment for me too. But I really can't complain about my recovery! It has been great so far compared to other stories and I am truly greatful for this. I hope that everyone could have the experience that I've had. Thinking of those having surgery soon, recovering at home and in the hospital! My thoughts are with you!

I can't really complain and wish everyone could have the experience I have had. I feel great and am doing good too from what the doctors tell me. I'm feel I'm getting stronger and things get easier everyday. It's the little things I know and I have been so thankful from all the different stories and experiences. This along with my great supporters have really made a great impact to my recovery. BP is fantastic and I am so glad about that!! Before surgery I was taking 3 different BP meds and sounds like I will be taking a small dose of Lopressor which they are using for heart medicine to help control the heart rate and not even for blood pressure. I am so thankful that I won't have to take all that medicine. Blood sugar levels are still fluctuating...sometimes it's good sometimes it's too low and sometimes it's too high. All is still normal from what they tell me. I sat in my chair for a couple hours today and got a good sponge bath and hair combed which felt so so good. I also walked about 1/4 of the way down the hall and back and felt great. I am only taking Tylenol to control the pain which has been great so far...hardly any pain...just soreness from the incision area...other than that no pain. Hope others are recovering well and continuing to be positive to get better...not everyone's story is the same or the outcome is the same, but hoping my positive experience will make a difference for someone else.

Thank you everyone for all the well wishes and prayers. I'm 2 days post op and feeling pretty good. I little fuzzy and weak today...everyone I try to sit straight up my BP gets too low. Hopefully up and walking around today. They still have me in the peds ICU because there are no beds in the step down unit. I'm not complaining...they have Popsicles, pudding and yummy tasting medicine...lol

Thank you everyone for all the well wishes and prayers. I'm 2 days post op and feeling pretty good. I little fuzzy and weak today...everyone I try to sit straight up my BP gets too low. Hopefully up and walking around today. They still have me in the peds ICU because there are no beds in the step down unit. I'm not complaining...they have Popsicles, pudding and yummy tasting medicine...lol

Here's an update on Tonia. Surgery went well Dr. Pettersson was able to repair her valve!!!!! Great news. She is resting comfortably with minimal pain. Thank you all for words of support . She is on the road to recovery

Hello everyone. My name is Peggy I am Tonias mom. Just wanted to let everyone know she just went back. She's doing well nervous but all in all good. Thank you all for the wonderful support you all have given her. I will keep y'all updated

Well I am here and checked in...just waiting...feeling pretty good this morning thanks to Xanax. BP was 126/74 which is amazing for me!! Surgery time is at 8:30.. Good luck to Petey and Marilyn today having surgery as well! Thank you all for the continued support and prayers.

Today I was able to meet the team that will be with me during surgery. I was caught off guard a little bit because I had to check in with the surgical nurse on the pediatric floor. I also found out that this is where I would have my surgery and also be in the pediatric ICU. My parents got a kick out of it...we sat in the kiddie waiting room and watched cartoons before our appointment....lol My family was relieved because they will be able to be with me the entire time in the ICU all day and night😊 Talked to the surgeon and he said that he is going to try to repair the valve but if not then he will replace it. We went over options, he provides pros and cons of different procedures. I chose to have the pig valve put in if he needs to replace it. He won't know if he can repair it until he sees exactly what's going on. It was a long day, but well worth it! Prayers to everyone having surgery today, tomorrow or this week!

Well sugary day is fast approaching! My parents are in town and today we meet with the "Team"...a long day of meetings and information. im excited and nervous all at the same time which I know is normal. Glad to have my parents here with me! No one can take care of you like your momma...lol Hoping everyone has a blessed day and thinking of those recovering and going into surgery this week. Tonia

Today was overall a great day, but very emotional for me. Today was my last day at work until my recovery! My co-workers were absolutely awesome and made this week a lot of fun with lots of laughs! Reality also smacked me in the face....I had discussions with both boys teachers and they both sensed that something was going on...both boys had been acting differently in school either being extremely emotional over everything or being very distracted. This literally broke my heart😢. I have been so consumed on my anxiety and hustle and bustle of getting things ready that I feel like I completely dissmissed their feelings. I know they will worry and I know they don't quite understand everything, but as a mother I want want them to see me in my weak moments, which have been frequent for many months. Hopefully the next couple of days will be better!

Got all my testing done today and was doing so good until the last CT scan with contrast. My BP went the wrong direction when they gave me Lopressor...it went up instead of down...3 extra hours at the hospital just to get it down. If that doesn't rack your nerves I don't know what does...lol All seemed to go well and I'm on my way home.

Just arrived for the day to complete all my pre testing activities. It's getting real now!!! The tests done seem to be too bad and none that I haven't already had done before. I am thankful that my surgeon decided I did not need to do a heart cath!! I'm not sure I could handle that very well! Hope everyone is doing well today and thinking of those having surgery and also recovering.

Had a great weekend!! 10 days and counting😱. Spent the weekend with the kids and some friends. Definitely trying to keep busy to keep my mind off of things, and it is helping. This week may be different...it's my last week of work, I have all my pre-surgery testing and getting all the final tasks buttoned up. It will be a busy one, but also full of emotional ups and downs. Wishing everyone having surgery soon and those recovering thoughts and prayers! Have a great weekend

I have to admit...I have 2 pretty amazing little guys in my life (6&9). We have been talking about mom's upcoming surgery. I try to explain the best way I can without loosing their attention span...normally that's about a minute...lol. My oldest is so smart and absorbs everything..he doesn't seem to interested in a lot of the details, but he understands what surgery is about. My youngest is much more intrigued by it all. He told me the other day that he hoped it was ok because he told his teacher that I was getting a new heart....poor teacher she probably had no idea how to respond....and with a kindergartener in your house, everything that happens is open for discussion with EVERYONE😂 I explained to him that I wasn't getting a new heart, just a new piece...next he wants to know what it looks like. I told him I would show him a picture, but he quickly spoke up and said...nah I think that would be "gross". They are both so sweet and caring and my emotions are starting to ramp up this week! 2 weeks today I will be having my surgery. My boys are what helps keep me busy and strong and not having much downtime to think too much about things. Wishing all the best to my fellow heart friends who are having surgery soon and those that are recovering from surgery.

I know that it is normal to have anxiety about surgery and recovery and all the "what ifs"...looking for some helpful hints or things that others have done to help with anxiety...I've been trying meditation, but have a really hard time getting my brain to relax...I've been doing some reading, read Adam's book in about 4 hours and it was helpful. I've come to terms that I have to have surgery...I guess at this point I don't have a choice it's schedules and things are set in place...but having anxiety about the whole waking up from surgery with breathing tube, wires, drainage tubes and all other kinds of things sticking out of my body😬...and the feeling of freaking out about it. Thanks for all the positive vibes!

I think I'm mentally prepared...we'll sort of. Just thinking about all the little things at home that need taken care of before surgery...you know I'm the Mom so I have to be superwoman...lol. Still nervous and scared but I think I'm handling my anxiety pretty well...still functioning and haven't had to take any anti-anxiety medicine in over 3 months. I feel better when I talk about what's going to happen with others....my family and friends are probably tired of hearing about it, but it is helping.