I guess life just gets in the way...what can I say it's crazy busy and having OHS surgery is almost a blur. My health continues to go up and down but you learn to cope. All the others "health" issues I deal with now are small potatoes.
I hope anyone is about to go down the journey of OHS goes in with as much positivity as you can. It's hard and there are so many emotions that come with that sentence but know that you can get through it. So many negative things happened since then and again I say it's small potatoes..... Life is a mystery and no one knows why we are dealt the cards we have. Play them baby!!!
2014 has not been a great both personally and health wise.
My dad battled cancer all this year and passed away on July 7th. My new "fixed heart" is broken again. How we will go on without our rock is beyond me. I have questioned my faith over & over and I am mentally drained. The love I have for my father is something that will NEVER die and I promise to keep him alive in my heart and my kids hearts.
I think back to my surgery and how scared I was and my dad telling me to stop worrying and that I would be fine..... I wish that I could have told him the same, Life is not fair, but it goes on no matter what.
I have really stopped working out with all that has happened and in turn am not feeling so great either. Today after going back to Boston I am going to get back on track and start taking care of myself again. I have had a lot of chest pain/burning and I am going try another pill for that. Taking a lot of pills is something that will never go away for me but its nothing after watching what my dad went through. When I start to get upset about how my health is I just think about him and how strong he was for these last 9 years fighting to stay here with us.
I am thankful to be here for my kids, husband and family...In the end its your family who will be there for you...........hold on to them tightly.
I hope my next update I am in better shape and lose some weight.... thats all i got for now
It's been a long time since I have written and so many things have happened since the summer.
Physically I am in the best shape I have ever been and really didn't know how sick I was until after surgery. I have lost 19 lbs and feel great!! I continue to work this heart out 4-5 times a week and hope that this spark never goes away.
I also am back on sotolal since going into A-Fib again in October. It was 24 hours in the hospital and Doctor said I am high risk for this to happen in the future given all my valve disease. So another pill that I thought was gone will be back for good.
My dad is fighting cancer again for the 3rd time so that is where most of my focus has been since summer. It has been up & down and not such great news but with god's will he will live life as long as he can and to the fullest.
I had a carotid ultrasound which was routine at my last appt. They found some stenosis in my aortic stent and could explain the arm pain I have had since getting the stent. Still waiting for my Boston Doctors to make the call on whether another procedure is needed. (hope not)!!
Al (my surgery buddy) call me a few weeks back and is doing great. Would love to meet up with him soon.
With the holidays coming I am going to try to enjoy them much more than last year. I mostly cried through the holidays last year. My family has had a lot of challenges this year but we are all still here and that is what matters. Life is so short and often passes us by before we know it. Love your family & friends this holiday season.....Enjoy every minute.....
Tomorrow is bitter sweet for me. I am actually sad that cardiac rehab is done I am going to miss seeing my work out buddies there. I joined a gym last weekend and I and determined to keep this up!!
Hard to believe its been 4 months since the scariest day of my life. I feel the best I EVER have and even though emotionally it has not been easy (many, many, many tears) I am proud at how far I have come in such a short period of time.
I want to tank all my supporters and you know who you guys are. This website was a great inspiration to me and I was fortunate to have found it.
I have completed 30 days and I haven't missed one day of a cardiac work out. I am on the hunt for a new treadmill as mine broke last weekend. The days I don't have rehab my ass is getting up at 5:30 to walk 2 miles around my neighborhood. I feel so good!!!!
I have also joined weight watchers thanks to a good friend. It was a challenge in the beginning but I have lost 6 lbs since starting 3 weeks ago.
I will continue to push myself and feel guilty to miss one day so I haven't. I am going to prove that Dr. Landzberg wrong!!! Wait till he sees me again.
Love all My family & friends for all the support!!!
I LOVE cardiac rehab!!!! This is a new me and I am glad to have this opportunity. Personally I have been really stressed and working out is my outlet. I want to make myself proud for the first time in my life I can see that happening. It is about time I put myself FIRST!!!!
Yesterday was my post surgery follow up in Boston. The surgeon had nothing much to say other than he wouldn't need to see me anymore. This on-x valve should last me many years but no telling just how long.
My cardiologist said that I looked great and couldn't believe how well I have pulled through this. He also said that my aortic stent's life span is unknown and would need to be closely followed. He told me now that I am on the other side it is now my time to shine. He wants me to try to make sure I get a cardio work out daily and to try HARD to keep this new heart of mine healthy. I need to lose weight as I have never really been able to work-out like a "normal" person. Now I am a normal person and not to be afraid to push myself more than I have in the past.
I got choked up as it is hard for me to believe I made it through this!!!! I thank god everyday that I am here and I will try to make more time for myself and get this body of mine in better shape. This has been a 16 month ride in Boston from start to finish. I thank Dr. Givertz, Dr. Couper and especially Dr.Landzberg for all his care and support. He made me laugh through this whole thing and that's the best medicine.
It will take a long time for this body of mine to feel 100%....but it will be me who will get it there.
Thanks to all of you for your love and support...it has meant a lot to me.
I went to the cardiologist yesterday and he said I could go back to work. He recommended I do a reduced schedule for the first week but with cardiac rehab 3 times a week I will be late to work. That will reduce my hours as it is. These past 6 weeks have gone by so fast and I am thankful to be feeling so good.
I hope everyone else on here is doing well and hanging in there. I have touched and been touched by so many fellow AVR patients. Its nice to know there are so many of us out there.
I am going back to Boston in a week to follow up with all 3 of my doctors up there. Have some questions about the stent but know this valve is going to out live me!!!
So I started today. I think this will be good for me. Of course age wise there is no one my age but I am used to this. I want to challenge myself in these 36 visits.
They made me start slow and I wanted to do more..(as I have already been doing the treadmill at home). So 3 times a week until I finish and I will do this before I go to work hopefully starting next week!!!
Week 5 is proving to be a much better week!!! Feeling better and more comfortable in bed. My back pain is actually a bit better but continue the physical therapy for that. Friday I see Doctor have an echo and with fingers crossed get the ok to go back to work and back to NORMAL!!!
Physical therapy is helping me a bit with my back pain...I went for my interview for Cardiac Rehab today and they had what seemed like 100 questions. Then told me they are backed up with patients and hopefully can get me to start next week.
I am doing me treadmill at home and taking it slow...doctor said to not break a sweat and I am not going faster than 1.8 so far. I did 45 minutes tonight and that was the most I did so far.
I am planning on returning to work on 3/4 providing that my echo on 3/1 is all good. I really need to get back to my daily routine.....never thought I would long to get back to work but I do. There is only so much hanging out in this house I can do.
The vitamin E is helping to heal my scar much quicker and I feel it looks pretty good for a month. I worry about my daily dressing and how my "old" clothes before surgery will show my scar. Some of my shirts I won't be able to wear anymore but I will adjust.
God it felt good to be stretched today!!! I have never felt this stiff before. I am anxious to start cardiac rehab because I want to get back to NORMAL!!! This has been a crazy ride that I never thought I would make it through. I should stop complaining about my back pain and be thankful that I am alive. I just hope I will be back to my normal self both physically and mentally.
My kids are my strength and Michael has been supporting me every step of the way. He is over cautious especially with me driving but I have to get out. I am thankful for all the support and love I have received.
I am going to work hard on getting myself physically better. Only I can do that!!
Saw my new doctor today and he was great. He said I am doing really good for 3 weeks post and would like me to start cardiac rehab next week. I am also going to do physical therapy for this persistent back and neck pain which he says is pretty common and should have been better by now.
As far as laying down and actually getting some sleep he wants me to stop using xanax for a sleep aid and try clonazapan as it will help relax my body and last longer than xanax. I can't wait to actually crawl in to bed one night and be comfortable. Maybe after i start rehab this will actually happen.
No work until I have an echo on March 1st which means 3 more weeks in this house!!! I am going crazy in this house but have started to work from home a little. With both the rehabs starting next week at least that will occupy my time.
Enjoying staying home in the Blizzard today with the family. This experience has really made me see things in a different way.....how precious our lives really are. I promise to never waste another minute!!!
I swear this back pain is up & down. I am icing and using a heating pad along with back rubs. Laying flat on my back hurts the most and I throb when I am on my back. I just want a full night's sleep. Just when I think maybe its finally getting better it gets worse.... I feel broken.
I did go bring my son to the walk-in yesterday and then walked through Wal-mart. I want to do things but when I do I pay for it later. I just can't stay in this house anymore!!
On a positive note since Michael has the time off from work..I am having him do stuff around the house. This is his last week off and he has gotten a lot done.
Hopefully when I see the cardiologist on Friday he can give me some insight as to when I will feel better from this back pain. My incision and stomach tube marks are doing great.
Went to my PCP today and he said I look pretty good for being 2 weeks out, He said I look a little pale but that is to be expected. No driving or exercise till I see cardiologist which is next Friday.
I have tried to do stuff around house like vacuuming, dishes and just picking up. Some days are better than others and I do tire easily, I am not a good patient and hate laying around here all day. I feel like my body is turning to jello.
I miss being useful....I am always running around crazy and want to see the kids games, Not this weekend but maybe next (depending what doctor says).
To anyone preparing for surgery...you can do this trust me. I was the most anxious person before this and I made it....you can to!!!!
I can't wait to sleep a full night. Last night for the first time since surgery Michael got me on the couch and I slept 4 hours!!!! The most I have slept since 1/18/13.
I feel like this back pain is getting the better of me. It is driving me crazy even with a heating pad and muscle rub. I know that it WILL get better but I am not a patient person.
Michael & my mom are taking really good care of me and the house chores. My sister is here twice a day to give me the lovenox shots (which I can't wait to stop!!!) I have have enough needles over these last 10 days for a lifetime.
I have had food delivered by my friends, edible arrangement, flowers and many cards!! Love all the support and thankful for all of you guys.
I got back late yesterday and it is so nice to be here!!! I missed the kids so much.
Doing the lovenox shots until my INR gets regulated and waiting for the VNA to come today. Still have a lot of back pain which is getting old.
This time last week I was in surgery...I can't believe that a week has gone by and I am so thankful to god for all he has done.
To my mom & Michael you truly helped me make it through this....Your love is unconditional and mom I feel closer to you than ever. I love you both and THANK YOU!!!
Pai, denise, steve and all my friends...thank you for watching my kids and carting them to all their activities so they could stay as normal as possible. You kindness and love has been so warming!!! I love all of you
Now the healing has to start and I am happy to be home to start it.
I doubted myself for being strong enough to get through this...I DID IT!!!!
Still in the hospital they want let me go home until my cumidian levels are higher. The days are long and the nights are longer. I need to go home to getsome sleep.
Something you dont get much of here. Other then that Im doing good.
Michelle is doing better today especially after her neck line and chest tube came out. She is like a new woman.
Her color is good and she is starting to look like her "new self". She is talking about going home. Misses her kids alot. We are cheering her on.
Just spoke with my mom and she finally got to see her after removing the breathing tube. They had to wait while they were trying to stabilizing her blood pressure. She woke for a few minutes was in a lot of pain and ask what time it was and went back to sleep and has been resting since then. I will up date again in the morning. :)
Can't beleive how fast this week has gone by!!! Tomorrow I will bring my kids to school and then I leave. I hope to get some sleep tonight but I haven't all week. This blog has been theraputic for me and I thank all of you for your support!!!
I finished work today and I signed my living will. My son is sick and I had to bring him to the doctor's today..Just a viral thing but making it harder for me to leave. I myself feel like I am coming down with something. I hope not as I really can not wait mentally anymore.
Tomorrow I am gonna hang around with my kids all day as we are expecting snow. Do all their laundry and help them with their homework. I still can't pack and probably won't till tomorrow night.
I wish I could bring all my family with me because I love you guys all so much. We have our flaws but in the end we are one STRONG family.
My heart is in god's hands and those are the best hand's to have my heart in.
I cried a lot today.....I feel like I can not pick myself up. My daughter has truly been my crutch. Tonight we laid in her bed together and I cried and cried. She said, "Mom I have never seen you cry this much!! You need to be strong and I will take of you when you get home." She is right I do need to be strong...but my worries make me crazy.
I don't know how I will make it through these next few days...but I will and Friday will be here before I know it.
I talked to my new friend "Dolly" today and she said to pray this week and put this in God's hands and I have no choice to do that. I often ask why would he even pick me to do something like this??? He must think I am stronger than I think I am.
When I look into my kids eyes I know I have to do this....I will not waste a minute of my time not enjoying them these next few days..
This time next week I will be in recovery....I still can't believe it's even going to happen. Everyday is a challenge to get through. I am going to try and enjoy every minute with my family this weekend and cheer my kids on!!
I got a lift recliner from my a family member and that will be my bed when I get back. I still have to tweak the kids schedule a bit and pack whatever I need for the hospital. My last day at work is Tuesday and then Wednesday I am spending the whole day with my kids.
I have felt loved by you all whether it was by a comment on here, a card by mail, flowers or just a hug!! I know I have to do this and that's it.....they will have there hands full when I walk in the doors of Brigham's & Womens...
I talked to another AVR patient by phone on Monday night. He did help a bit to ease my fears...BIG THANK YOU CHRIS DIXON!!
That being said I really don't think anything will ease my fears at this point. I cry when I cry and that's really it....I have no control over my feelings.
Every night when I hug my kids goodnight I cry the most. Last night before I did that I was talking to my long time friend Caroline on the phone and really didn't cry much...I guess because we had so much catching up to do!!
When I put Morgan to bed and she hugged me I didn't cry and she said this am, "Mom I am so proud of you, you didn't cry last night when I hugged you!!!" That must mean you are getting stronger and I hope she is right!!
This waiting has been a crazy ride. I did put the kids schedule together for the week I will be away. I sent it to all family & friends that will help out. It's amazing how many people are willing to help. I love you all for that!!
It is also hard for me to let go and have everyone do what I do everyday. I will miss seeing my kids games but know I will be back in action doing what I do best.....BEING A MOM!!
This weekend has been great!!! I had a real bad day Thursday and my mom was there to dry my tears. Thanks mom for always letting me cry on you.
Friday night my friends took me to dinner and it was great. We talked for hours and hours and truly felt loved. I then watched my kids four basketball games and thought I am going to miss watching all there games as I almost NEVER miss one.
Tonight 2 of my cousins and sister took me out for dinner again. We laughed and cried, though we don't see each other enough its like we are little girls again when we get together.
I needed my spirits lifted and boy did I get a lift this weekend. I love you all.............Thank you
I am almost done reading Adam's book. After seeing the pictures of him and another man in ICU I freaked out. Couldn't sleep all night. The tubes and wires that were draped over these men were unbelievable. I keep thinking when I wake up with that tube in my throat and neck I am going to have a panic attack!!! His story and how much pain he endured only to become hooked on vicodin. I just keep thinking am I really brave enough to get through this??? I broke down in front of the kids last night and Morgan said, "wow mom this is serious because your crying!" If they really only knew what this entailed.
Fear is a serious and crazy thing. I have never had this much fear in my life.
No sleep even after taking Lunesta which only let me sleep 2 hours. The thoughts that take over my mind at night are crazy, my dreams are crazy, I am going crazy.
I hope in 2 weeks from today I get in the car and don't give Michael and my mom to much grief. The time is going by way to fast :(
Today I lounged around all day in my pj's!!! Haven't had one of these days in a long time...but will have plenty coming soon. I enjoyed hanging out watching movies with my daughter all day while the boys were outside playing in the snow. No stress for about 12 hours straight!!!! Back to work tomorrow and that's it for now.
Last night all I could think of was my aunt. She passed away in June after her 3rd aortic valve replacement. Why??? She was only 64 and I really could have used her as close and personal reference. This brings me back to the whole god thing again....I keep thinking why does he only protect some and not others?? I want to know how she had the strength to do this 3 times...Did she cry...were her emotions all over the place??? She did a great job of keeping them to herself and was much braver than I am. Miss you Tia
I am so stressed out...Today I could cry over anything and everything. If its this bad now what will it be like in 3 weeks, how will I get in the car??? I keep thinking of how that car ride is going to be (will i jump out?) It is going to take some strong meds to get me there in one piece. I feel like it comes in waves but not good waves!!! I wish I was at the beach floating on a wave. My doctor at Hartford Hospital is no longer seeing patients which is freaking me out.....been with him 17 years or so. I feel as if I lost my friend so when I get back I have to start with a new doctor...more stress
As hard as it was I tried to enjoy my family during these last 2 days. In church yesterday I couldn't stop looking at the cross hanging in the center. At times I could stare at it for minutes as almost I am seeing through it. I do believe in a higher power but often question if there is. As 2012 comes to an end I am glad to see it end as it was a a VERY stressful one for me. I hope that the next 3 weeks before my surgery I can keep as busy as possible as that is the only time I feel I am ok...especially at work. Jan 17 will be here before I know it.
As the bells at the church across the street from my office rang 26 times this morning I paused to pray for the victims of sandy hook. Makes my problems really small as the loss of anyone's life is sad but especially a child. I have been not wanting Xmas to come all month and been pretty miserable because of it. After this tragedy I promised myself to try to enjoy the holidays with my family but especially my kids. Sometimes it takes a tragedy like this one in Connecticut to make you stop and smell the roses so to speak.
As Christmas nears I am more anxious but more than that I am thankful for all that I have. I love my family unconditionally.... all of them. To my kids especially I hope that you know how much I love you and hope I have done my best to guide you both in the right direction. I wish I could click my heels and this would all be done.