Tina's Journal

I had my 2 week check up for my pacemaker today. I have been having lots of twitching in my chest muscles since surgery. My doctor reprogrammed and lowered the settings so I should no longer feel it pace my heart each time. Everything else is healing great! I have to go in for check ups every 3 months, but hope that I don\'t have to be back in for surgery for 10 more years!! The doctor said the old pacemaker leads and device were so bad, they have never seen anything like it. He said it looked liked I had the device in for my whole life, not 15 months. He seems to think that it was a faulty product from the start and has been deteriorating inside me. It has been 5 weeks since I have had any visual issues. I was hoping it was all better, but it happened again on Monday. ~Hope Everyone has a Happy Thanksgiving ~

During surgery they found that the whole device & both leads were bad! So they had to replace everything. It took about 2 1/2 hours. They have me on bed rest right now. I\'m in some pain, but over all feel good. I was told that this may be the cause to all my visual problems too. Glad they found this when they did. Hope to start feeling myself again. Thank you all so much! Your prayers help me to continue fighting & stay strong., Love you all!

It\'s official.... I have to have surgery again Tuesday, November 8th! My pacemaker has not been working right and my heart has been skipping 3 beats in a row. I need to have one of the leads replaced that attach to my heart. That means 6 weeks out of work again, Luckily the new job is making an exception for me and will let me return when I am healed! To top it off ~ I found out I have bronchitis today! I think some one is punishing me this past year..... for what I don\'t know

I have been having some light headed/dizziness issues so my doctors were following up and monitoring me. Last night I received a call late from my pacemaker doctor\'s nurse. She told me that they are seeing signs of something not quite right with my heart. I have a monitor that tracks my pacemaker every day since I am 100% dependent on it, they use it to detect problems when I am at home. She told me that I needed to come to the office the next morning to run tests. I was also told that there are pauses with my heart beat and that the pacemaker is not working right. I was skipping 3 beats in a row, which was why I was not feeling right and thought I may faint at times. I have had my pacemaker for 15 months now and never had an issue, so I was concerned. She explained it was very serious to come see them as soon as possible. I knew if my doctor\'s nurse was calling me at 9 pm things were not good. When I went in for testing today I had an x-ray and many other tests preformed to look at what may be causing the issue with my pacemaker. My father came with me so I did not have to go alone. It sounded very serious and that I may be having another surgery today to fix the issue. The doctors think there is a lead problem and would have to preform surgery to fix it. That means no lifting my left arm for 4-6 weeks again! All I could think about was, not a great thing to happen and deal with the 3rd day at a new job. I know I should be more concerned about myself and fixing this problem because the pacemaker is the only thing keeping my heart beating. Since they did many tests and can\'t find any issues with the lead from the x-ray, the doctor is unsure about having me go through another surgery. So he changed some things with my setting and wants to try a few other things first before he puts me under the knife again. After 3 hours there they sent me home for now. We were almost positive I was going to have surgery today, glad that didn\'t happen. But it is not ruled out yet. I have to wait on the doctor to review some things and see if what he changed fixed things. I said to my doctor... Don\'t you think I have been through enough and had enough surgeries this year? He agreed, so I\'m hoping they resolve my problem with out another surgery!

Almost 5 years ago I met with a new doctor that I believe came into my life for a reason. During a routine exam, she heard something different with my heart beat. Then she sent me in for more advanced testing of my heart. A few days later I got the phone call that had changed my life. I was then diagnosed with a congenital heart defect. I was born with a bicuspid aortic valve and throughout the years I developed a large aneurysm throughout my aortic root & ascending aorta.The doctors told me that if I would of got pregnant, me & the baby wouldn\'t survive & if the aneurysm ruptured I would die suddenly. This was so scary & hard for me to understand. I was a 26 year old healthy woman & felt great. I also was seeing the same doctor for over 10 years. I couldn\'t figure out how this could of never been found before. I had many restrictions for the past 4 years and have been on heart medication everyday. I also had to see a cardiologist every 6 months to have tests done. Everything was stable for 3 1/2 years until the aneurysm grew to the point of rupture. 1 year ago on July 23, 2010 I had open heart surgery to replace my Bicuspid Aortic Valve & Ascending Aortic Aneurysm. After my surgery everyone thought things were going well, until my heart stopped. I remember lying in the hospital bed talking with the nurse when everything went black, then I felt my body jumping on the bed like I got shocked. I opened my eyes, had bad chest pain and was scared. They told me my heart stopped for 13 seconds and said that I have heart block due to trauma from my surgery.There are always risks with surgeries and mine didn\'t turn out exactly how we had planed. Seven days later I had to have another surgery to have a permanent pacemaker put in. There was a 10% chance I could end up with one and I am now 100% dependent on it. After 10 days in the hospital, two surgeries and three new parts inside me, I was finally sent home to recover. I have had some vision issues and many more tests since my surgeries, but I am great full for all I have overcome. I have to continue to see my cardiologist every year and my pacemaker doctor every three months to make sure everything is working good. My pacemaker should last about 8 years and the valve 10 years before I have to have surgery again to replace them. This past year has been an emotional roller coaster for me and my family. I am blessed to have such wonderful friends and family that have been a great support system through all of this. I have so much to be thankful for even though it has not gone the way I would of liked, things could of been worse. All of this has only made me stronger. For all of you about to have surgery or just out of surgery, stay strong and positive. Even with all the obstacles I have had to face this past year, I managed to get through them all. Thoughts and prayers to you and your families during these difficult times.

It has been 9 months now since my surgeries. So much has happened these past months, but I think I am finally on the right track to getting better. I have been doing well with my workouts and have also joined two classes a week with trainers to help me. I am getting stronger every day, but still have a hard time with the pace maker & keeping my heart rate under where the doctors want it. During my work outs I wear a heart monitor and have to frequently stop what I am doing to try to catch my breath and lower my heart rate. It is very frustrating not being able to do what others are doing in my classes. I thought that after this surgery I was going to be able to do things I have been restricted from, but ending up with the pacemaker brings some restrictions right back. I can\'t hate the pacemaker to much because with out it I wouldn\'t be here. My vision has been the same, no change. It was blurry again today for about 20 minutes. It usually still happens 1-2 times a week. The doctors did so many tests and tell me I am a tough case. They can\'t figure out exactly what it is and why its been happening since surgery. They don\'t know if when my heart stopped it could of caused these issues. They are guessing the vision disturbances are ocular migraines and said they can put me on medicine everyday, but don\'t know if it will help. I decided against the medicine and want to wait to see if they get better. I have been on so many different meds for years, and finally was taking off of them. I don\'t want to go back on more.

Today ~ February 4th, is National Wear Red Day . It\'s the day to wear your favorite red clothes or accessory - a red blouse, a red dress pin, a fabulous red handbag - put on red lipstick, or sport a red tie and red socks. Go red in your own fashion to show your support for women and the fight against heart disease. Protecting your health and supporting others. Now that\'s great style that touches all of our hearts ~

6 months ago today I had an ascending aortic aneurysm & my aortic valve replaced. 1 week after that I had another surgery with a pacemaker implanted. It was a difficult recovery, but I am doing good. I have been back to work for 3 months and things are going well. I have realized that I am weaker now & lost a lot of my muscle from being off work for 3 months. I joined a gym about a month ago to start working out again to get my strength and energy back. The Doctors have me wearing a heart monitor to keep track of my heart rate. Because of my pacemaker I am not suppose to go above 140 , which I have found is not easy at times. I have still been having issues with my vision since surgery. I have had about 6 different tests, a head ct scan, echo test, tee test & 3 eye appointments. Still we have found no answers. Which is good that there are no blood clots or other problems that they see, but something is causing my symptoms. It has been happening about once a week lasting any where from 15-30 minutes. It stopped for about 3 weeks and I thought it was gone, but it came back and has happened for the last few weeks again. It is not painful, just distracting. It is hard to focus or concentrate when it happens. I can\'t read and have had to pull over while driving to wait it out. Hopefully what ever it is will still go away with time. Other then the vision issues my recovery is going very well. Every day I feel better then the last. I have lost many symptoms I had before the surgery due to my heart working to hard. It is great to finally feel healthy again after so long. I do get short of breath easily still though. Everything will continue to get better with time.

It has been 4 months since my surgery & I have been back to work for 1 month. Things are going great at work, better than I thought. Lifting does not hurt my incision anymore, but being hugged to tight or bumped by the kids does. I have had my nephew and the boy I take care of, slam their bodies into my chest pretty hard a couple times, it is very painful. I have still been having issues with my vision becoming blurry and lasting 25 minutes now instead of 15. We still have not found a cause. I have been giving a few options of what we could try next.... see another eye specialist at a different hospital for the 4th time, get a TEE which is a Transesophageal echocardiogram a day surgery where a tube goes down my throat to look for blood clots around my heart, or I can do a coumadin trial for 3 months. I have my Doctor talking with some others Doctors getting more opinions on what to do next, then I guess we will decide. I had an appointment with my cardiac Electrophysiology Doctor today which is the doctor that works with my pacemaker. Everything looks good, he had to adjust my settings and fix a couple things. I am still 100% paced, don\'t think that is going to change anymore. The battery life lasts about 8 years then I will have to have it replaced. I have follow up appointments every 3 months. A huge Thank You to all that were a part of the Heart Walk 2010 & everyone that participated or donated to my Hearts For Harlow team. What a great turn out we had and a beautiful day. I am blessed to have such wonderful friends and family that have been a great support system through all of this. Love You All! I really do have so much to be Thankful for this year, even though it has not gone the way I would of liked, things could of been worse. All of this has only made me stronger. Good Luck to those about to go through surgery and to the ones on their journey through recovery. God Bless Happy Thanksgiving Everyone

Today has been 12 weeks since surgery. I will be going back to work on Monday. I was not going to go back for another 1-2 weeks, but I miss the boys I take care of and think I am ready to return. It might be a little difficult because one of the boys is 4 years old with down syndrome. I do need to lift him at times, but the doctor reassured me that I can lift again after 12 weeks. So lets hope he is right. Some days I have little to no pain and I forget that I am still recovering from open heart surgery. Today I accidentally bumped my chest incision hard with something, it was so painful it brought tears to my eyes. It took awhile before the pain went away. I guess there will be no ruff housing with the boys just yet. As for my vision, I did have issues with it on Sunday again. It is not happening as much, but still not gone. I am looking forward to this Weekend for the Heart Walk. I now have 24 people on my team. I will walk on Sunday to raise awareness for heart disease, everything I have been through and all my loved ones that have been affected by it as well as many others. This past week we have lost my husbands Uncle Tom Harlow to a heart attack. My team Hearts for Harlow will take on another meaning for some of us when we walk on Sunday. We Love you very much Tom, May you rest in peace.

This past week I graduated from cardiac rehab, received my certificate, I wore the cap & gown too ~ what a great feeling to have come so far in these past 2 months ~ I will miss many of the people I have met there and hope they continue on there journey to recovery. I will also miss everyone that worked so hard to help me accomplish my goals and push me to get better. I did go back to have another eye exam last week. Once again they did not find anything affecting my vision. The symptoms happened again yesterday as well as today. 10 weeks have passed, just when I think it is getting better it happens more. I wish it would clear up and go away soon, I am hoping to go back to work in 2 weeks.

It has been 9 weeks today since my first surgery. Everything has been going great, but I thought the issues with my vision were done until it happened yesterday lasting 15 minutes. I was on the phone with my surgeon when my vision went blurry again. He recommended that I go back to see the eye doctor. So I have another appointment for Wednesday next week. He said that it isn\'t safe to be driving with this happening. I am hoping he doesn\'t restrict me again, it has been so nice to come and go as I please. I don\'t think the Eye Doctor will find anything, he said my eyes looked great last time. I have read many comments about others having these same issues with vision and vertigo after their valve surgery. Maybe it will go away with time. I am excited to say that I will be graduating from Cardiac rehab this Wednesday. I can\'t believe how far I have come and how fast I have been recovering. I do believe it was good that they started me only 2 weeks after surgery. It made me push myself to get better faster. I will miss the people I have got to know there and hope they get better every day. My surgeon told me today that I am still on a weight restriction of 10 pounds or less up to 3 months after surgery. I can return to work taking care of children after 3 months as well. I miss the boys and can\'t wait to get back to their smiling faces. I heard they have been asking about me and miss me, I am going to show up after school this week and surprise them.

Finally after 8 weeks, I am released to drive again! I am so thankful for all the help from family and friends, but am excited to get some of my independence back. My Echo test and CT scan results were great. My 2nd eye test wasn\'t perfect, but the Doctor wants me to come back in 3 months for another test. He doesn\'t think it is anything to worry about right now. My vision has been much better this week. We still have not found exactly what was causing the issues, but it could of been from a number of things from surgery or migraines. The good news is that it is getting better! I can\'t wait to finally get in my well rested jeep and go for a drive to where ever I want. I didn\'t think I would miss driving so much. Better watch my money now... I can actually go shopping again! I reached my goal this week in rehab. I am at a 4.5 incline on the treadmill now. I also used the elliptical machine for the first time, it felt great. I finally feel these past few weeks I have came so far in my recovery. It doesn\'t hurt to take deep breaths, cough or sneeze anymore. I have full function in my arm and can sleep on my belly again. Things are really looking up. I am hoping to graduate from rehab with in the next 2 weeks.

So this week I had more tests done, but have not found out what is causing my blurred vision. My head CT Scan results came back as normal, no blood clots. I had an eye exam yesterday, 20/20 vision and everything looks great. I have another eye test on Monday to make sure they are not missing anything. The eye doctor says that something is causing the issues with my eyes, but doesn\'t think my eyes are the problem. I also had an echo test done yesterday, still waiting for the results. They are looking for blood clots or anything that shows up since the surgery that could be the cause. I don\'t want them to find anything, but then again we need to fix the problem so they will release me to drive and I can start getting my life back. The symptoms with my eyes are happening more frequent and lasting longer. I am off all medications now except a low dose aspirin a day. Other than the vision issues, I am doing great. Rehab is going good and I am improving everyday. I am now up to a 3.5 incline on the treadmill and my goal this week is to get to 4 or 5. Then they will let me start using the elliptical for the first time since surgery. Another goal of mine is to be healed enough for the heart walk on October 17th. I have my own team and have been participating for years. This year I truly am a survivor. Thanks to everyone for your caring words and support and thinking of me during this time.

I met with my cardiologist today for the 1st time since surgery. He removed my stitches from the pacemaker site. He said everything was healing nice and I looked great. I lost 8-10 pounds since surgery, but am finally starting to enjoy food again. My blood pressure has been low still, so he decided to keep me off the metoprolol (heart meds). I have still had problems with my vision being blurry and dizziness, one episode lasting 15 minutes on Tuesday. I am still not cleared to drive because of my symptoms, which might be a problem with my mom going back to work next week. She has been taking me to almost every appointment so far, now my Dad will be taking over and helping me. My husband is gone 13 hours a day working and it is very hard to rely on him for rehab/doctor appointments, plus someone has to bring in income. Since my symptoms have not gotten better I now have 3 more doctor appointments next week, a CT Head Scan, Echo Test and Ophthamology (eye exam). I hope after those tests we find out more.

Today I had a chest x-ray and an appointment with my surgeon. All looks great, no more fluid from surgery and my incision is healing nicely. I have had some concerns since my surgery. I have been light headed/dizzy and had blurry vision/seeing spots. I thought I was released to drive last week, but because of these symptoms I was still restricted. I am so lucky that my Mom has taken time off of work to take me to rehab and where I need to go. The Doctor decided to take me off of Metoprolol (my heart medication) as of today and see if I still have those symptoms. My blood pressure has been very low. It would be nice to finally go off the meds, I have been on them for 4 years. If I keep having these issues I have to contact him next week. He said something about blood clots/mini strokes? Hope it is just the meds, I don\'t need more set backs with this surgery. Other then that he said that I looked skinny and told my Mom to make sure I am eating. Great, just what she wanted to hear, she has been saying that to me since I was in the hospital. I do eat, things just don\'t taste the same anymore. They say you loose your appetite and taste buds with the anesthesia from surgery and can lose up to 10 pounds the first 30 days. Of course now she took me to lunch and invited me over for dinner tonight.... what are mom\'s for. As for Rehab, it is going great. I am up to 3.3 speed on the treadmill for 25 minutes and ride the bike. I also started the arm bike now. My arm/shoulder were a little sore this week from it, because I have not used them in 4 weeks since the pace maker surgery. It is getting easier and feels great to finally start using my arm more. I have a weight restriction of 5-10 pounds for another 2 months then hopefully should be getting back to normal. The Doctor said it takes up to 6 months for the breast bone to fully heal.

I am very sad today to read the update about Lori, one of our Heart Valve Journal members. I have been keeping track of her updates and now sit here and cry for her and her family. I have been thinking and praying after every update I read, for her recovery. My thoughts and prayers go out to her husband, their 3 daughters and all family and friends during this difficult time. I am so very sorry for your loss.

Today I had my appointment with my Cardiac Electrophysiology Doctor. He is the Doctor that preformed my pacemaker surgery. I have so many different Doctors now, it is hard to keep track. He removed my steri-strips and said the incision is healing nice. It was still a little swollen and pink so he cleaned it, applied some ointment and covered it for another day. He explained to us that the top part of my heart is working, but the lower is not. I have a heart block possibly due to trama during my first surgery. Both the top and bottom need to work together to make my heart beat. Right now I am 100% dependent on my pacemaker. He did clear me to drive now, but still have to wait about 2 weeks before I can lift my left arm above my heart. I see him again in 3 months and will continue every 3 months after that. I have an appointment with my Cardiothoracic Surgeon next Thursday and my Cardiologist in 1 month. I hope everything else is healing good as well. My rehab is going great. I am up to 20 minutes on the treadmill and 20 minutes on the bike each session. Others in class still question why I am there and tell me I am to young to go through this. I was born with a heart condition, I am just thankful we found it when we did. Everything happens for a reason right, and I believe this will only make me stronger. A guy graduated from our rehab class today. There was a little ceremony for him. He wore a cap and gown. His cap had a heart tassel hanging off the end. It was great to see how far these people have come and their accomplishments. I\'m excited for when it is my turn to take that next step.

Today marks 3 weeks since my heart surgery and 2 weeks since my pace maker surgery. I feel so much better this week and started my rehab. My mornings are the hardest part of my day. I wake up stiff and in pain, but as the day goes on I get better. I have come a long way in these short weeks. It is still hard for me to take deep breaths and I was very tired today. I took a couple naps and had a lazy day. Hopefully tomorrow I will have more energy. My Mother and Husband have been great these last few weeks and I can\'t Thank them enough. I see the pace maker Doctor on Wednesday so I can\'t wait to hear how I\'m healing (and when I can finally lift my arm).

So today I started Rehab, I\'m the youngest in there, but figured that since I am only 30. It was uncomfortable at first but we are all there for the same reason. I thought they were crazy at first when they told me I was starting rehab, I mean it\'s only been 10 days since I got home from the hospital. It was good though, I enjoyed meeting everyone that is going through kind of what I\'m going through. It felt good to walk on the tread mill and ride the bike. They did take it easy on me since I am fresh out of 2 surgeries. I have to go Mondays, Wednesdays and Thursdays for an hour each time. (I think it is for 6+ weeks) I have been getting better each day, but I\'m not going to lie some days are hard. Taking a shower and getting dressed take so much out of me, I need to rest after. Since I did have to have the pacemaker put in, it is difficult to get dressed and do most things. I can\'t raise my arm for about 4 weeks so only 2 more to go. With these hot days I have to have help even putting my hair up to cool off since I can\'t do it on my own. Other than a few minor set backs I am doing good and I\'m only going to get better.