Carol's Journal

Sondra Tomei  A good portion of my upper sternum and all the hardware from my AVR surgery was removed. As a result my sternum will never close. I often experience pain from my ribs moving out of place. Since I work in physical therapy, I was able to find the right therapist with experience in rib mobilization to help me and I am also able to self mobilize to correct the alignment. When I’m not in alighnment it stings and hurts. Additionally my upper ribs crack all the time. Try phyical therapy for rib mobilization and muscle release.

Carol Huston  I'll mention that to my PT, once I can go back again. I have to wait for the new year for it to be covered.
My ribs and sternum don't move. But the sting can stop me in my tracks for a moment.

Cathleen Weed  If you are going to eat foods with Vitamin K then it has to be consistent, as in every day, the same amount. That is THE only way they will get your dosage and INR right for you long-term. It's either that or avoid Vitamin K all together. You have to be VERY consistent, one way or the other. So if you want to continue eating spinach salad (for example) then you need to eat the same portion every day. You can't skip around. Also, keep your exercise consistent because that will impact your numbers as well. 💛

Carol Huston  I try to exercise but I have a problem with my left big toe and my right ankle. I can't do more than half a mile before I have to stop because of the pain. May need to go back to the doctor for it. I'm already in physical therapy for bone disease in my neck and bad disks.

Terrie Hodges  I have surgery 4/24/17 so I can't answer post-surgery...but I do know about anxiety and depression from personal experience...I do pretty well as long as I move...walk 2 miles a day...or before diagnosis group exercise 5 mornings a week...have you been through Cardiac Rehab? I bet exercise will do the trick...if not a therapist who deals with post traumatic events like major heart surgery and agoraphobia...as a last resort, for me anyway, medication....Exercise by way of Cardiac Rehab is likely safest...just do it and report on how well you feel!!!!!

Cathleen Weed  Hi Carol, it is kind of normal after heart surgery and usually subsides with time, but at the same time you don't want to ignore it if you feel it's getting worse. It's good that you recognize it so that you can manage it. If your cardiologist isn't hearing what you're saying then find another Doctor who you can talk to you about mental health. It's important that you face it head on and take care of it. Also, you can reach out to your hospital and they may be able to put you in touch with a support group with people in similar circumstances post surgery etc.
Many blessings and please keep us updated on how you're doing 💛💛.
Cathleen

Phyllis Petersen  Ditto what Cathleen said. I've had some motivation issues, but yours sounds like more. It's very important that you follow up on this.

Carol Huston  I went through what was called rehab in December and January. Usually, I was the only heart patient there. I felt good after but as time has gone on, unless I have an appointment, I stay in our apartment.
I have a service dog for anxiety, ptsd and a list of other things. My husband says we are a good match because she is neurotic.

Phyllis Petersen  I was glad to have a group at cardiac rehab, who little-by-little started opening up on their own journeys. I miss many of them. I'm glad you have a support system to help you through this.

  Prayers for your granddaughter Carol. I was born at 24 weeks old in 1968 with double pneumonia and tomorrow at 5am at the age of 48 I will be having OHS to repair a Regurgitant Aortic Valve. So if I survived in 1968 only being carried 6 months I'm quite sure technology is capable in 2017 to help your little granddaughter battle through this. 😉Keep The Faith, God Bless Your Granddaughter, and Your Family and get you through it.

Carol Huston  Good luck with your surgery. Mine was a lot easier than I thought it would be. I had an aortic valve replacement and aorta replacement.

Lisa Giaccone  Hi carol! Don't worry! I'm a PT in early intervention and these preemies do amazing! God bless her, she will be a feisty fighter forever!

Carol Huston  Since I posted this Sophie has done so well. At one point, she decided she didn't need her breathing tube anymore and repeated pulled it out. So she went to a nasal cannual. Now she is breathing completely on her own.
The staff are discussing when to let her go home.
She was 1 pound 12 ounces when she was born, now she is up to almost 4 pounds.

Steve Farthing  Here's a quote from the blog on this site: Dr. Sloan Guy writes:

John, Sorry to hear of your trouble. Yes, sternal “non-union” can occur. This is where the two halves of the sternum or breastplate fail to heal together as they should after heart surgery. Early after heart surgery, this may mandate an operation to fix the problem depending on the presence, absence, or extent of infection. Later, after the chest is healed, if a sternal non-union is present, it can be treated easily with sternal plating or sometimes just left alone depending on symptoms. The best way to sort this out is with a CT scan of the chest to really see the problem and a visit with the patient to determine the level of significance of the problem. It can heal by itself. It is fairly uncommon but not rare and in my practice we see it once a year or so.
https://www.heart-valve-surgery.com/heart-surgery-blog/2015/02/24/sternal-nonunion/

Carol Huston  Other than some stinging, I haven't really felt anything. I am a little sore to the touch along the sides of the sternum.

Carol Huston  I also have a very high pain tolerance. I had some dry needling done to the base of my skull with a current through them. The PT doc said I had a high tolerance because it took a while for me to feel it at all.

Lisa Ferguson  Keep us posted on what the PA says. I'm really curious, since you aren't in a lot of pain (even with your pain tolerance), if they really think it's not healed correctly. I wish I understood more about how the sternum heals as it would reduce my anxiety as well! Even if they don't do anything for you, it seems like a good thing to know that it's not as strong as it should be. Good luck!

Carol Huston  Well, I'm about to head out for my appointment. I'm guessing the reason I haven't felt much from my sternum is because it was a partial sternotomy, about a 3/4. The first 3 inches or so were never cut. Maybe that is why I never had a problem opening the fridge or even putting the foot up on the recliner. Wish me luck.....

Phyllis Petersen  You've taken the first best step getting in touch with doctors and having the xray. Sometimes the pain is just nerves coming back on board. I'm still numb in spots and when the sensation starts to return I get itchy and/or pain. It fades after a few days. I hope this is easily resolved and doesn't cause you any big problems.

Carol Huston  If the report actually is inconclusive, I'm considering asking for a CAT scan. I want to be sure.
Thanks for your comments, Phyllis. Be proactive, right? Oh, and stubborn about what I feel is needed.

susan kotansky  I'm over a year past my surgery and am just now weaning off a beta blocker because finally my hr has slowed down. My heart rate went through a bunch of weird things over the course of the year. Sometimes out of the blue it would just start beating really fast and then slow down. Now, after a year it feels as if it's normalizing. 7 weeks is so very soon after surgery. If your cardiologist is not concerned you probably shouldn't be either. Give yourself some time and patience. I wish you the best!!

roseline hartmann  I'm with Susan...as she said your a "fresh OHS". Your heart is a bit irritated. I too had erratic rithyms for a few days`. I would just listen to my body and take it easy. Was your blood pressure good?

Phyllis Petersen  I had MVr on 10/13 and I still have occasional jumps in my HR. My cardiologist has been happy though with the numbers he's seen from cardiac rehab and I'm stopping metoprolol this week. I'm a little nervous, but know it's being watched. Are you doing cardiac rehab?

Catie B  Carol, I just saw a neurologist for some scary headaches I started having. In my case, they're caused by exertion and seem to be innocuous. Hope you feel better soon.

Rita Savelis  I am 19 months after OHS and get the increased pulse (after stopping betablockers). I also get tired on stairs. I am told my heart is fine.
I have a new type of headache (as well as the old ones) after surgery (which the doctor says is "vascular"). It used to happen everyday and wasn't debilitating because it did not last for more than 15 minutes. If it had lasted longer, it would be hard. I still get regular (every month) migraines with nausea.

Doctors (especially surgeons and cardiologists) rarely think this is an "issue" because it is not their field. Your surgery went fine and your heart is fine, but there are various "side effects" to deal with
It's terrible, I know.
You might want to talk to a neurologist about the headaches.
Take care. And yes, it is still very early for you. So being tired on stairs is normal. Being exhausted is normal. I was exhausted for months.

Carol Huston  My bp has been 'normal'. I still have the headache, but I'm trying to ignore it for now. I have so many appointments for health reasons, it's getting hard to balance them right now.
My cardiologist had ordered a cut in the intensity of my cardiac rehab. I thought It was very interesting because I had just started.
I've had small rises in my temp. But by the time I notice them, they brake. I'm starting to think I'm just looking for things to go wrong.

Phyllis Petersen  It can be tricky to know what is an issue and what isn't. If your cardiologist is seeing your results from rehab, he probably knows best what intensity you need to be at. Good luck moving forward and I sure hope the headaches subside for you.

Rita Savelis  Carol, you're not looking for things to go wrong. You are just sensitive to it all, as one is after this big ordeal which affects so many parts of the body.
And you need answers, that are not always given.
I hear you on the "so many appointments" as we try to deal with all the various problems. It does smooth out eventually. It gets a little less crazy and intense.
Take care.

Carol Huston  Does anyone know a good site for Warfarin information? I'm trying but only once has my INR been above 1.7.

Rita Savelis  I don't know how long you have been on an anticoagulant, but it can take months (after OHS) to get your INR at the range you need, as your body takes time to get used to it. Sometimes the doses you need at the beginning can be high, but they eventually will stablilise and go down. It helps to have a GP you can call or see, to help you figure out how you should be changing that dose (usually by very tiny increments). Afterwards you get the hang of it.
I hear you because I thought it was a really frustrating experience and it really was on my mind all the time.
It took longer than I thought to feel comfortable with it, as I do now.

Before going on coumadin I was on another anticoagulant, préviscan, (which is used in France, but not in the U.S.) but I never stabilised on it, so I was switched to coumadin, which also took time to stabilise.

Carol Huston  My OHS was October 28. Now my resting heart rate is high for me. Usually I'm at 67-68. Today mid 70's to upper 90's. After rehab today, I was told to go home and rest for the day. I wonder if this could be because I was so out of shape before the surgery.
Thanks to all of you for your patience with me.

Phyllis Petersen  Some days I sit forever waiting for my heart rate to come down so they'll take my resting BP after rehab; other days I'm done quickly. We're all trying to learn patience with our new normals. It can take quite awhile before it all evens out.

Carol Huston  I guess I had this very misguided idea that all would be great after the surgery. I was doing very well the first few weeks, then I started having trouble getting up the stairs to my apartment. I have been sitting around for 17 years waiting for things to get to the point of surgery. I really went down hill the past 8-9 months. I have decided that my heart is just in bad shape from years of being cautious and having trouble doing somethings. I am off the exercise restrictions. My heart rate goes down fairly quickly but still not to were it was. I know I need to get out and move more but I am also a bit agoraphobic, at least according to one doctor. I leave if I have an appointment or something I must get done. I have got to force myself to get out and walk. Maybe after a while, I will be able to do more. I need to learn patience, again.
I have been told I process some meds quickly. I wonder if that could be one reason for the trouble with my INR's. I am trying to be careful about what and how much I eat. It was really hard not to polish off the quacamole that my husband brought home. I know I should eat the same amount of vitamin k every week but it's not easy.
Thanks for all of your comments. Are any of you in South Texas?

Carol Huston  I guess I had this very misguided idea that all would be great after the surgery. I was doing very well the first few weeks, then I started having trouble getting up the stairs to my apartment. I have been sitting around for 17 years waiting for things to get to the point of surgery. I really went down hill the past 8-9 months. I have decided that my heart is just in bad shape from years of being cautious and having trouble doing somethings. I am off the exercise restrictions. My heart rate goes down fairly quickly but still not to were it was. I know I need to get out and move more but I am also a bit agoraphobic, at least according to one doctor. I leave if I have an appointment or something I must get done. I have got to force myself to get out and walk. Maybe after a while, I will be able to do more. I need to learn patience, again.
I have been told I process some meds quickly. I wonder if that could be one reason for the trouble with my INR's. I am trying to be careful about what and how much I eat. It was really hard not to polish off the quacamole that my husband brought home. I know I should eat the same amount of vitamin k every week but it's not easy.
Thanks for all of your comments. Are any of you in South Texas?

Carol Huston  I thought it would be great after because I had little pain and was moving well. Thought I'd add that.

Carol Huston  I thought it would be great after because I had little pain and was moving well. Thought I'd add that.

Rita Savelis  You know Carol, it can take time to feel "safe" again, and to have desire to do things. It's easy to blame yourself, but it's not you. You are getting used to a whole new set of things and that takes time. You will be able to do more, but it takes time: months/years... Take little steps, and you will feel more like you accomplished something or did something that was hard like go out to walk. I remember feeling like I just wanted to be inside, feel safe, not get so tired, not worry. All of this was after OHS. It took time but I am okay now.
I have a higher pulse rate than i ever did before OHS, but am told that that is okay too so I am trying to accept it.
Accepting all the changes and changing your habits can take time.
Take care.

Phyllis Petersen  Carol, My blood pressure and heart rate are driving me crazy at times this week. Every little thing seems to have an effect. That's why I'm glad that I'm doing cardiac rehab or else I'd be scared to do almost anything. On Wednesday, my blood pressure was high at the beginning, but they didn't really adjust much. Then, by the end it was way down. Today, my heart rate wouldn't come down, but my blood pressure was a lower than they'd like at the end. As more nerves kick back in, I'll have weird random pains. I have no idea how long it'll take my body to readjust, but from everything everyone has said, it will in its own good time.

Carol Huston  I don't know if what they call the cardiac rehab I am doing is really cardiac rehab. I am going to a physical therapy place. They don't have the harness for heart monitoring. I am using a Nu-step, hand bike and a treadmill. When my time is almost up, I let the PT know so they can try to be there when my time is up. Like someone else, I think, has said, by the time I am finished for the day my pressure is lower than when I started. I do like the place. But the restrictions my cardiologist put us on for 2 weeks has set me back. I was asked how I thought it was going at my re-evaluation, I told them frustratingly slow. I'm trying to come to terms with the new Temporary physical slow recovery.
I have been surprised that I had very little chest pain after the surgery. The minute I got home, I was able to use the handle on my recliner to pop the foot rest up. I was able to do things that others said took them a month to do.
My biggest headache currently is adjusting to the warfarin. I have only had my level above 2 once. This week it was 1.3.

Phyllis Petersen  My cardiologist's assistant told me I could go other places for rehab, but because I live fairly close to the hospital (they also have a center even closer), so I chose to use the hospital center. It was helpful when my cardiologist was deciding whether to continue the metoprolol. He pulled up my telemetry numbers from rehab and felt we could try it. Do they take your blood pressure before during and after sessions or just beginning and end?

Carol Huston  They take it when I get there, before every machine and after. Then they wait 2 minutes to check on how quickly the pressure goes down. I was never placed on a beta blocker. My fitbit has my resting rate at 77. It is usually within one or two of the readings taking by the PT.

Carol Huston  Ok, this may be nothing but.... In the past month I have had a terrible time with my allergies. I've gone through 8 boxes of tisses.
Tonight I was rubbing my scar to break the inner scar tissue free. When I got about half way down I noticed a gap that had not been there before. The gap got a little wider as I went farther down.
Once in bed, I was having a strong ache, enough to make me clench my teeth. I started feeling the area that was bothering me, there was no gap.
I will be 12 weeks post-op tomorrow. Is it possible that my sternum has opened? Should I go to the ER for an x-ray? I'm supposed to go camping with the Boy Scouts this weekend.

Phyllis Petersen  Oh Carol! I hope you called your doctor to make sure that everything is okay. Did you get to go camping?