So I'm 6 weeks post ohs to replace my aortic valve. 3 days after I came home my son and his family's house burnt down. Thank the Lord they all made it out safe. 3 weeks after surgery I received a letter informing me I was terminated from my job. My insurance ended yesterday. Thank the Lord it was still in effect to cover pre-surgery, surgery and post-surgery. All I'm having to pay for is INR tests and 3 cheap medicines. My grandson was born premature at 2 lbs 11ozs. He's a healthy 3 lb 9 oz's now and doing well, thank the Lord. I'll admit there's been some bumps along the way, but I honestly have to say that God has been so good to me and my family. When I look at all that could have happened, I realize it was His grace and mercy that took care of us all. I thank Jesus for bringing me through it all. I'd like to thank all of you who have posted on this blog because your stories have encouraged me along the way. Knowing I wasn't alone in this journey of ohs was very helpful. To the others who are facing this surgery I'd like to say it's doable. Sure they'll be good days and bad days, but you can make it through it. Just take one day at a time. I use to think my condition was a death sentence, but I realize now- it's not. It just gives new meaning to my life. Through it all I've learned to trust the Lord and to lean on Him. I AM BLESSED!!!!!
Anna Jones It seems really cr***y for your employment to be terminated while you are out on sick leave. I wonder if that is even legal? I'm so glad your family got out ... Read more
Anna Jones It seems really cr***y for your employment to be terminated while you are out on sick leave. I wonder if that is even legal? I'm so glad your family got out of the house safely. Congratulations and warm welcome to your grandson.
Sending best wishes that everyone will prosper from whatever adversity and that there will be good times and much health ahead.
Helen Daw “Faith wouldn’t be real faith if you only believed when things were good” read it on this website and loved it. I’m thankful for my faith every single day! May God continue to bless you.
Rose Madura Oh Wanda. You have been through so much, glad you have faith to carry you through. God is good all the time and he knows the beginning from the end. I pray ... Read more
Rose Madura Oh Wanda. You have been through so much, glad you have faith to carry you through. God is good all the time and he knows the beginning from the end. I pray things will get better from you soon on all fronts.
Mark Wilbur Very sorry to hear about your problems and your son's disaster. I've lived long enough to have witnessed numerous times that time heals these problems; and ... Read more
Mark Wilbur Very sorry to hear about your problems and your son's disaster. I've lived long enough to have witnessed numerous times that time heals these problems; and that when one door closes another door will open. And, usually, that "other door" leads to better opportunities and a better life. Be open to them and let God lead you. Prayers for you and your family. And thank you for your assurance that this surgery is "do-able." I'm counting on it!
Michael Eichhorn Romans 28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Susan Lynn I am so sorry to read your news - that's a lot to handle at any time in your life. With regard to your job loss, I'm not sure if you met the requirements or ... Read more
Susan Lynn I am so sorry to read your news - that's a lot to handle at any time in your life. With regard to your job loss, I'm not sure if you met the requirements or filed for Family and Medical Leave at your job, but your termination during your disability certainly raises a ton of questions. Terminating people due to certain medical conditions is unlawful and protected by several laws depending upon the size of your employer, as well as some other guidelines. I'm not sure how coincidental you think this termination may be, but you may want to call a local employment attorney if you feel you are the victim of discriminatory behavior.
INR home monitoring machine
Journal posted on April 11, 2018
Does anyone here monitor their INR at home? If so what INR machine do you have and how well does it work? Thanks for Information in advance?
Having problems getting my INR to the needed area of 2.0 to 3.0. Shots in the morning and shots at night, plus upped my Coumadin to 6 mg. Still just at 1.9 today. Very discouraged.... Going through some depression and anxiety attacks. Go to surgeon tomorrow for post-op check up.
Gina Fiorentino Hang in there Wanda. So relieved to hear you are going to visit the surgeon tomorrow for follow up. If it's helpful- I've been encouraged to write down a list ... Read more
Gina Fiorentino Hang in there Wanda. So relieved to hear you are going to visit the surgeon tomorrow for follow up. If it's helpful- I've been encouraged to write down a list of questions when I go in for each check-up as it easy to totally forget something important with limited time to talk about everything. Also- when I'm anxious and feeling panicky, my counselor told me to stay in THIS moment and try to avoid worrying about the past or future... and breathe. It is natural to be overwhelmed, but our brains are highly suggestible, so it helps me to try to focus on "what I want" vs "what I dont want" during times of stress. I will be thinking of you!
John Clough I was on Coumadin for three months and only got above 2 once. If it is a natural valve I would not sweat it, my Surgeon told me to just down a whole asprin instead of a baby asprin.
Wanda Blackwood Thanks y'all. They've upped my Coumadin again to 8mg along with shots. I haven't been eating greens or high vit k stuff, so I really just don't understand what ... Read more
Wanda Blackwood Thanks y'all. They've upped my Coumadin again to 8mg along with shots. I haven't been eating greens or high vit k stuff, so I really just don't understand what the issue is. I got the On-X mechanical valve.
Noreen Kitchen I found that as I became more active my inr dropped which they said is quite common. Mine took awhile to get stable and it still fluctuates at times. I understand ... Read more
Noreen Kitchen I found that as I became more active my inr dropped which they said is quite common. Mine took awhile to get stable and it still fluctuates at times. I understand the anxiety of doing the shots I really struggled with that too. You will find what works for you with dose and diet. It will get better it’s still early days for you.
Wanda Blackwood Thanks Noreen. I've really been struggling with this.
Rita Savelis I hear you. It's hard. Sometimes your body takes more time than the norm. You need an increase in your med dose to get your INR up. After that, your INR will ... Read more
Rita Savelis I hear you. It's hard. Sometimes your body takes more time than the norm. You need an increase in your med dose to get your INR up. After that, your INR will shoot up, and you will have gotten to range. But they increase very slowly. Afterwards, your dose may end up being lower, but your body needed that push to start it on its way.
It's very important to get patients to the right INR.
You may never know what the real issue is. It just is that way. It's not your fault, or anything you're doing right or wrong.
The first weeks/months can be hard.
I hated those shots. I hated all that testing.
It made me very annoyed and in a funk.
I really really wish that the hospital staff would explain that this happens and it is normal and you will get there and that you are not a freak if your initial INR takes time to stabilise...
Then you can just breathe and accept it.
But I think your body is also in a turmoil hormonally after OHS, so everything is out of whack.
It gets easier. It does. But it's a transition.
woke up scared
Journal posted on March 30, 2018
So something happened last night that has freeked me out. I woke up and I had forgotten I had valve surgery. This in turn caused a panic attack which I've not had since 2003. Has anybody else experienced something like this? It's really shook me up.
Bonnie Stone-Hope Hello Wanda,
This must have been very frightening for you. Have not had any similar experiences but have had some super crazy dreams, since surgery. I assumed ... Read more
Bonnie Stone-Hope Hello Wanda,
This must have been very frightening for you. Have not had any similar experiences but have had some super crazy dreams, since surgery. I assumed it had something to do with the medications ordered post op.
Wanda Blackwood Thanks Bonnie, it was frightening. Still not quite sure what happened or why. They run some blood test and EKG. Said everything looked fine. Now I'm left wondering ... Read more
Wanda Blackwood Thanks Bonnie, it was frightening. Still not quite sure what happened or why. They run some blood test and EKG. Said everything looked fine. Now I'm left wondering what happened. Meanwhile I'm nervous it might happen again
Rita Savelis This may be a delayed reaction to all that you've been through. You get past the physical trauma and then the emotional trauma catches up.
I had a lot of intense ... Read more
Rita Savelis This may be a delayed reaction to all that you've been through. You get past the physical trauma and then the emotional trauma catches up.
I had a lot of intense dreams after OHS, some of which were brought on by betablockers.
Wishing you some peace.
Wanda Blackwood Thanks Rita. It was very scary. I woke up disoriented and couldn't remember having the surgery or even that I'd been home for a week. It slowly came back to ... Read more
Wanda Blackwood Thanks Rita. It was very scary. I woke up disoriented and couldn't remember having the surgery or even that I'd been home for a week. It slowly came back to me. But it's been very scary. Don't know what caused it or if it's gonna happen again 😢😦
Barbara Wood PTSD? I read that it happens after heart surgery pretty often. I haven't had any panic attacks but I do find that I'm now squeamish about medical things where ... Read more
Barbara Wood PTSD? I read that it happens after heart surgery pretty often. I haven't had any panic attacks but I do find that I'm now squeamish about medical things where I wasn't before. Last night we were watching a tv show where they depicted a man having a sternotomy & I had to leave the room. I agree with Rita- the emotional trauma comes after the physical trauma...after all, look what we've been through!
Hope no more panic attacks for you Wanda...best wishes to you!
Wanda Blackwood Thanks Barbara, I hope no more too. I am so ready to be back to a more normal me. Today I feel like part of me has died and I'm looking for the me that's gonna ... Read more
Wanda Blackwood Thanks Barbara, I hope no more too. I am so ready to be back to a more normal me. Today I feel like part of me has died and I'm looking for the me that's gonna be for the rest of my life. I don't think I'm ever gonna be the same person I was before the surgery.
Lilly Black I hear you, Wanda. The mind is complex! I've been dealing with major PTSD for a long time. Drugs also play a big role when recovering after surgery. Take a day at a time.....it takes time to heal! take care.
Wanda Blackwood Thanks Lilly, yeah it's been very nerve wracking. I'm hoping and praying it don't happen again tonight 🙏
Nancy Surprenant Takahashi Wanda I had a hysterectomy in 2016 and then my gladdbladder out 9 weeks later, i then began having all kinds of nightmares, mostly that they had now to remove ... Read more
Nancy Surprenant Takahashi Wanda I had a hysterectomy in 2016 and then my gladdbladder out 9 weeks later, i then began having all kinds of nightmares, mostly that they had now to remove my liver, i would actually wake up with phantom pain in my neck and parts of my body. The nightmares went away then when I was told that I needed OHS they came back this year. I was told by my neurologist it was a form of PTSD. I would assume you are having the same, it's very tough to deal with all these health issues without it affecting us. My doc put me on meds to calm me and it helped my mind rest while I sleep. I have since stopped taking them and things seem to be ok. I do sometimes take a melatonin at night. Try doing some relaxation things before you go to bed, try to get your mind to go to a happy place. Now when I go to sleep i take this peaceful trip in my mind and I go to someplace warm, I'm on a magic carpet and I on m carpet I bring all my loved ones and my cat, and I can feel the warm breeze, overlooking beautiful flowers. I must say it has helped.
Lilly Black Nancy and Wanda, I totally agree! Meditation and visualization is a daily ritual for me as well and it helps me very much! It reduces stress and clears my mind of negativity. Take care.
sleep deprived
Journal posted on March 21, 2018
So has any one else had problems sleeping? Still in hospital due to fluid in lung and INR. I fell asleep around 9:30 was back up by 10:30. Fell asleep again about 1:30. When I woke up felt like I'd been asleep for hours, figured it would be about 6 or 7. Looked at clock and it wasn't even 2:30😕. Anybody else have this problem?
Rita Savelis Yes, and I feel for you. Sleepingcan be very very hard after OHS. I didn't want to take sleep meds, but doctors convinced me that my body needed some sleep ... Read more
Rita Savelis Yes, and I feel for you. Sleepingcan be very very hard after OHS. I didn't want to take sleep meds, but doctors convinced me that my body needed some sleep so I did take them every few days.
So many mornings in hospital I woke about 3AM and then just waited, waited, waited for morning to happen....
John Formby Hi Wanda - I’m 7 weeks post OHS and have only recently started to sleep through- I managed 7 hours last night.😁It was difficult in hospital as I was interrupted ... Read more
John Formby Hi Wanda - I’m 7 weeks post OHS and have only recently started to sleep through- I managed 7 hours last night.😁It was difficult in hospital as I was interrupted every hour or so for bp and temperature checks etc. When I got home things didn’t really improve and I was waking every hour. As time passed by, an hour became 90 mins and then two or three hours. I’m now sleeping well and averaging between 6 to 8 hours a night. I normally go to bed around 9-30 pm and read until I start to drift off. It took time but please and try and hang in there - you will get there😴
Helen Daw I did. I did not sleep well in the hospital and was waking up every hour or two. It gets better when you are home.
Bonnie Stone-Hope Hello Wanda,
I found the lack of good quality sleep difficult. Could not sleep well on my back, and had to sleep on my back until the sternum healed (6 weeks). ... Read more
Bonnie Stone-Hope Hello Wanda,
I found the lack of good quality sleep difficult. Could not sleep well on my back, and had to sleep on my back until the sternum healed (6 weeks).
Tried several things which had some success, such as a glass of milk at bedtime applying lavender on my hands at night, using lots of pillows.
The only thing I could do was realize that it was a short term issue, would be over soon, spent a lot of time reading during the night on my iPad.
Had lots of time to think, so also, solved a lot of world problems.............HAHA.
Melissa A Yes! for the first few weeks it was hard for me to sleep on my back.. I would wake up all the time. It gets better with time
Jim Harvey I saw a you-tube post from someone named Stephanie. She recommended ear plugs (naturally), an eye mask and a white-noise app for your phone.
blah
Journal posted on March 20, 2018
So I've ended up with fluid around one lung that they've had to drain. Then I'm on lasix for the fluid around the other lung that we're hoping won't have to be drained. Potassium to counter act the lasix. On a heparin drip to bring my INR to lol level it needs to be. And having bowel issues. Any advice would be appreciated. Went into this with a good attitude, but really getting discouraged at this point.
Helen Daw These are just bumps along the way and most people get one or two on their journey to recovery. Mine were fast heart beats and low blood pressure along with ... Read more
Helen Daw These are just bumps along the way and most people get one or two on their journey to recovery. Mine were fast heart beats and low blood pressure along with blurry vision. I’m exactly 5 weeks after surgery and still get blurry vision. It is a major surgery give it time. All the best.
Melissa A Stay strong! I had bowl issues after surgery too! I’m now about 6 weeks out from surgery and having back pain so just in the process of figuring out what ... Read more
Melissa A Stay strong! I had bowl issues after surgery too! I’m now about 6 weeks out from surgery and having back pain so just in the process of figuring out what this problem is..I’ve been getting discouraged too! But I just keep telling myself this is just temporary. A lot of people seem to get little bumps in the road of recovery. Stay strong I’ll pray for you to have a speedy recovery.
Sonia M Glad to hear from you Wanda. I also had bowel issues during my recovery in the hospital and feeling fatigued. My major issue was being anemic and low blood ... Read more
Sonia M Glad to hear from you Wanda. I also had bowel issues during my recovery in the hospital and feeling fatigued. My major issue was being anemic and low blood pressure for sometime, however it got better as I went through my Cardiac Rehab after. Obviously Everyone recovers differently. Your body has gone through allot, just be patient and give yourself time to recover. All the best and hoping for a faster recovery for you.
Toni Z Agreed, this is normal. I was on heparin drip which caused bloody pee. I was given a strong laxative. It worked and I got to go home. Best wishes.
Rita Savelis I'm sorry to hear that Wanda. If it's any consolation, there are many possible normal after effects of surgery (that are often not discussed pre-surgery). It's ... Read more
Rita Savelis I'm sorry to hear that Wanda. If it's any consolation, there are many possible normal after effects of surgery (that are often not discussed pre-surgery). It's discouraging. I had 4 pleural effusions drained. Found that the lasix didn't do enough alone.
INR can take a long time to get to where it needs to be. This is normal but also disheartening.
The more you move around, the easier to get a bowel movement going, but all that you have been through has thrown your body out of whack. Light meds for bowel movements can help.
I know it's a drag to stay in hospital, but it sounds like you are being closely monitored and that's good. So many patients are sent home right away only to have issues come up at home.
Wishing you some peace.
Wanda Blackwood Thanks y'all. It does get very discouraging. Hoping today's x-ray shows great improvement in fluid pocket. Still may not get to go home due to low INR. Really ... Read more
Wanda Blackwood Thanks y'all. It does get very discouraging. Hoping today's x-ray shows great improvement in fluid pocket. Still may not get to go home due to low INR. Really appreciate all the encouragement y'all 😁
Rose Madura Hi Wanda. I'm sorry you aren't feeling well. I found that the surgery journey is not a picnic in the park but if you hang in there, it does get better. I ... Read more
Rose Madura Hi Wanda. I'm sorry you aren't feeling well. I found that the surgery journey is not a picnic in the park but if you hang in there, it does get better. I had a ton of complications but now I'm fine. Stay strong.
Tina Williams I had fluid around one lung too and had to have it drained before I left the hospital. I was shocked-I've always been so healthy! Once home I had lots of issues ... Read more
Tina Williams I had fluid around one lung too and had to have it drained before I left the hospital. I was shocked-I've always been so healthy! Once home I had lots of issues with oxygenation and shortness of breath and had to have home 02. After a few weeks though it all went back to normal and I was thrilled to have those oxygen tanks picked up:) Best wishes!
Helen Daw Praying for you! Can't wait to read your updates.
authur ruwona all the best wanda you going to appreciate the decision you take cant wait to join us on the recovery path i had mine on 22 december 2017 and already back to ... Read more
authur ruwona all the best wanda you going to appreciate the decision you take cant wait to join us on the recovery path i had mine on 22 december 2017 and already back to work its amazing the recovery path is awesome do not worry about the set backs of pain just after surgery its normal yu got this may GOD always be with you all the time....
Sonia M My thoughts and prayers are with you. Wish you a speedy recovery.
Bonnie Stone-Hope Sending you best wishes for a successful surgery and look forward to reading your posts soon.
Rita Savelis I guess you'd have to put various patients with various valves next to each other to make a comparison. The sound does vary from person to person no matter ... Read more
Rita Savelis I guess you'd have to put various patients with various valves next to each other to make a comparison. The sound does vary from person to person no matter what the valve. There are examples on this site as to the sound (use the search box). I no longer am really aware of the sound of my mechanical valves (I have 2) unless the room is very very quiet.
After OHS many patients (including tissue valve recipients) are very aware of their heart and the sounds it makes and its pounding. But this changes with time.
Take care Wanda.
Wanda Blackwood Thanks Rita. I'm planning on going with the On-X. I know my dad had a mechanical valve and the noise bothered him especially at night. I already hear my heart ... Read more
Wanda Blackwood Thanks Rita. I'm planning on going with the On-X. I know my dad had a mechanical valve and the noise bothered him especially at night. I already hear my heart alot with my aortic stenosis. So I was just wondering. Thanks and I'll check the search thing.
Meredith Bray I use a white noise machine on the rare occasion that it keeps me awake. It's background noise now, like living next to a freeway or train tracks, after a while you don't hear it anymore. (I have OnX)
Soggy Rodent The sound I heard from stenosis was a very loud whoosh. The sound from my mechanical valve sometimes just sounds like my heart beat. Other times it has a clicking ... Read more
Soggy Rodent The sound I heard from stenosis was a very loud whoosh. The sound from my mechanical valve sometimes just sounds like my heart beat. Other times it has a clicking sound. To me, the clicking sound is a comfort bcz I waited so long for my surgery and that whoosh sound was like water torture on my emotional state.
Wanda Blackwood Thanks, Meredith. I can see where that would be true. We have a church above our house that plays music every hour and we've grown so accustom to it that we don't usually even hear it anymore.
Wanda Blackwood Thanks Soggy, I agree. The whooshing sound gets pretty nerve wracking to. I hear mine alot. Thanks for the advice.
A big thank you
Journal posted on February 24, 2018
I just wanted to say thanks to the people in this heart community. I've really reaped some great advice. I appreciate all the encouragement and support I've gotten from others here. The stories and journals I've been reading have truly been a blessing and help in my own journey. So to all my heart family I just want to say "THANKS!!!"
All went well with the surgeon. Surgery is scheduled for March 15. Anyone heard of aberrant right subclavian artery? And would it affect valve replacement surgery?
Gina Fiorentino Hi Wanda, I wish you well with your surgery. I see March will be a big month for both of us :) Im originally from the Charlotte area as well.
Susan Roberts Glad to hear this! Your date is right around the corner!
Wanda Blackwood Yeah, I'm kinda glad to. Ready to get it done and be on the recovery side. Still nervous about it, but trying to just rest in the Lord's arms.
first visit with surgeon
Journal posted on February 20, 2018
At the Dr's office waiting to meet Dr. Frederick. Gonna discuss tests results and surgery. Pretty nervous right now. Still not for sure about which valve to use. Trying to decide between bovine or on-x. Don't like the thoughts of blood thinner for the rest of my life 😕.
Anna Jones Hi Wanda, Good luck at the surgeons office. I will be visiting my first surgeon next week. I don't like the thought of blood thinners either. I hope you will ... Read more
Anna Jones Hi Wanda, Good luck at the surgeons office. I will be visiting my first surgeon next week. I don't like the thought of blood thinners either. I hope you will get the answers that you want. Please keep us posted.
Karen Warren Best of luck to you Wanda. Will keep you in my prayers.
Kelly Stoll Hope the meeting went well. Best wishes. You'll make the right decision for you.
Susan Roberts Hope he was able to answer all of your questions and help put your mind at ease!
Rose Madura Your surgeon can help you decide on the valve. My surgeon didn't try to sway me one way or the other but his answers to our questions helped to make the very personal and difficult decision.
Susan Killian I htink it comes down to how long the surgeon thinks it will last. Mine is for my mitral valve, he said the tissue ones only last around 6 years, mechanical ... Read more
Susan Killian I htink it comes down to how long the surgeon thinks it will last. Mine is for my mitral valve, he said the tissue ones only last around 6 years, mechanical has blood thinners but would last a lifetime. I am hoping the repair is successful but if not I am going for mechanical.
Wanda Blackwood Thanks to all of you for the encouragement and advice. After discussing with my surgeon I've decided on the On-X. My surgeon informed me that my valve is small ... Read more
Wanda Blackwood Thanks to all of you for the encouragement and advice. After discussing with my surgeon I've decided on the On-X. My surgeon informed me that my valve is small and to use a bovine it would require enlarging the area. He assured me he could do it either way, but for me I feel safer with less invasion.
Susan Roberts Hi Wanda. Best wishes with your upcoming surgery. See you on the recovery side!
Gerald Poulton Hi Wanda, you will find people here who have had both operations at the same time, best to have both done if needed. I am curious why you are asking the bipass ... Read more
Gerald Poulton Hi Wanda, you will find people here who have had both operations at the same time, best to have both done if needed. I am curious why you are asking the bipass considering your age and you apparently dont know if you have blockage or not. The best scenario is that you dont need a bipass and you have your bicuspid aortic valve replaced like I did but if by chance you do have blockages they will take care of those at the same time. It is easy to worry about the worst scenario but try to keep positive and hope for the best. Which ever way it turns out, they will fix your problem and you will join us on the recovery side 👍
Wanda Blackwood Thanks Gerald. I was concerned because my mom had her first heart attack along with stents to fix the blockages at my age. My dad had the aortic bivalve like ... Read more
Wanda Blackwood Thanks Gerald. I was concerned because my mom had her first heart attack along with stents to fix the blockages at my age. My dad had the aortic bivalve like I've got. He had his surgery when he was 55. So I was curious as to others who might have had both issues.
Lyn Hubber Hi I have had two valves replaced and one repaired plus by pass 21 days ago going well apart from fluid on legs.
Wanda Blackwood Glad you are doing well. It's very encouraging. I'm on my way now for heart catheterization to see if I have any blockages. I'm nervous about it all. Kinda feel like I'm in a whirl wind.
Marie Myers Yes, Wanda, the whole open heart experience is a whirlwind. But it is doable. Hopefully you have no blockages, but if you do, they can be bypassed during the AVR surgery. All the best to you !
Gerald Poulton Hey Wabsa, positive thoughts coming your way, my dad had a massive heart attach at 70 with quadruple bi pass, at 65 when I had my operation, no blockages at all, hope you have the same good fortune 👍
Wanda Blackwood Thanks to all for the posts. Arteries are clear, thank the Lord!!! I go Friday for CT scan to check for aneurisms. Then to heart Dr to discuss surgery options on the 20.
Gerald Poulton 👍 good to hear Wanda, thats a big positive
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Sending best wishes that everyone will prosper from whatever adversity and that there will be good times and much health ahead.