Jill's Journal

Jill Dahl  I didn't have high BP before surgery but do now. I don't feel lisinopril agrees with me because of side affects like cold feet and some sweating which has gotten better. I don't know what role metoprolol plays at 12.5 mg twice a day. My pulse varies up to 80 and down to the 60s. I do get tired at night at hearing my heart beat and wonder how much it is effected by the ascending aorta being replaced. Insomnia is still a problem even with pills. So it goes.

Rita Savelis  Metropolol can also give you cold feet.... and the sweating is usually a general post OHS side effect which does go away. Your body has been through a lot and the heart is central so various things can be out of whack for weeks. Insomnia is hard. I feel for you. I slept poorly for 6 weeks after OHS, and seemed to always wake up at 3 or 4AM.
I think it would be comforting for you to see a cardiologist sooner, but hopefully the PA will answer some of your questions. Be vocal about needing sleep meds. It can take awhile for the sternum to feel okay again and even then one can be "aware" of it for a long time. Don't know how to describe it, but I am still "aware" of it years later, especially when I am tired or doing something physical like carrying heavy groceries. Take care Jill and a happy post-OHS 2018 to you!

Jill Dahl  Thank you for your caring response. I was very disappointed to find my cardiologist was going to be on vacation for my first appointment after surgery. I did go to my GP and she is very good, but I don't want to depend on her for information that the heart institute deals with every day.Amitriptiline is not helping my sleep as I thought it would and has in the past. Restless leg syndrom has reared it's ugly head again after being gone post fusion surgery. Ugh!! I just need a break. We are in Montana so winter is in full swing. Would have been nice to have the surgery later in the spring so getting outside would be easier. I would have put the sugery off until spring but I was feeling terribleand afraid the valve would fail.

Has anyone tried Ambien. If so, what is your experience with it? My family hasn't had good luck with it. The doctor gave me a script for it, but the instructions said not to use it if you are taking something that causes sleepiness. I am on clonazapam so that nipped taking Ambien in the bud for me. I know getting off clonazapam will take a lot of time. I am thinking of using THC which is legal in our state to see if it works. Would be nice to get off clonazapam.

Barbara Wood  Jill, I had many of those same symptoms at 4 weeks too, especially very bad insomnia.. Tylenol with sleep aid ( over the counter) helped me a lot. Hang in there, it does get better!

John Clough  Jill on lisinopril and metroprolol as well trying to get off both, lots of fresh garlic pressed and set for 10 minutes before swallowing and celery seems to help. No real side affects from the drugs just want them out of my life. I would buy a Fitbit and get 10000 steps in a day or snowshoe use that as your sleeping drug.

Rita Savelis  I used Ambien (every other day or so, or when I really needed sleep) but if you can't use it, I'd try THC.
And I think it's terrible your cardiologist left you alone so soon after OHS without at least giving you another cardiologist you could see in his place for one visit.
Sometimes I don't think doctors realise what it's like to be back out there in the world again with various side effects and complications and questions that need answers after such major surgery. I found it very scary to leave hospital - and yet I was in hospital for 4 weeks! Followed by a live-in cardiac rehab hospital for 3 weeks! And even after those 7 weeks it was scary.
I'm always impressed (and also saddened) by patients in the USA who are back out into the real world in a few days and left to deal with side effects on their own, along with all the questions and worries that one obviously has.
OHS patients are so tough, and many have to act tougher than they can possible be.
Take care Jill.

Meredith Bray  My surgery really triggered my insomnia. I still have issues sleeping more than 5 hours at a time. My favored remedies are a combination of:
White noise machine
Melatonin
Lavender oil rubbed on my feet
cPAP machine (every night)

But after surgery, for about 2 months I did a lot of laying in bed watching Netflix with headphones while my husband slept. I think a lot of it was that I was afraid to go to sleep - that I might twist or turn myself and open the sutures or break something inside. Valid concerns, all things considered, but I never did hurt myself sleeping.

Hope you find a solution that works for you!

-Meredith

Jill Dahl  Thank you for all your advice and sympathy. I have gone through this process before but I don't remember the insomnia being as bad, even though I am an insomniac and have been all my life. I went to a session of Body Talk yesterday and the therapist put a "node" in my mental process that I would start getting tired at 9 p.m. No go. He also suggested Calmz a homeopathic to help with sleep.

I would really like to understand why this happens to so many people. In reality, I guess our beautiful hearts and bodies aren't happy with the changes that have occurred and our brains have been under a great deal of stress from the heart lung machine. All that I know is I need some decent sleep soon. I took a pain pill early this a.m. for some relief. This is not something I would usually do and don't want to make a habit of it for sure. But I needed to rest and have soreness in my chest muscles and legs that was bothering me. The chest muscles seem to be worse today too.

I went to the BT therapist before surgery and did wonderfully getting out of the hospital in three days. So my husband and I decided to give it another try for RLS (restless leg) and leg pain from back surgery. The RLS seemed to move down into my feet last night. I guess lower is better and maybe it will go away again.

I walked almost two miles today. That might be the chest culprit.

THE has been in my thoughts. I guessential I should do that sooner than later as Sessions doesn't seem to want anyone to have marijuana medical or otherwise. I do take melatonin and nighttime Tylenol along with clonazapam and now amitriptiline. The amitriptiline used to work, but now it is like taking nothing.

If this lasts another four weeks I guess I will be okay. The body just isn't happy with us. But we are alive and feeling much better. I keep telling my brain and body everythingis okay but I guess it has to figure it out in its own time. Just like I keep telling my heart to slow down, but it wants to heal first.

Take care and peace and good health be with you all.

Jill Dahl  John, You sound very ambitious. With fibromyalgia, I have to pace myself a bit more. However, that doesn't mean I haven't gone snowshoeing and walking five miles on our trails in the Rattlesnake Valley. My goal is to get back to that five miles. I was moutainbiking with my husband, but gave it up because of health. It was hard on my back. But boy did it get the endorphins going. I liked that. I don't know that I exactly want to ride mountains again, though I do miss riding up to different creeks in the Rattlesnake Recreation area near our house. The Fitbit is a good idea because when I was riding bike I believe my pulse was over what it should have been. I had an exercise watch but it was too complicated.

I too want drugs out of my life. But insomnia has ruled my whole life so don't know if that will happen. There is always hope because I don't think these drug companies are very honest about how their drugs work.

Rita Savelis  We all want drugs out of our lives, but sometimes they have to happen. The world is not perfect. I'm not a meds person either, but I took what I had to, to be able to sleep. Doctors said I needed to sleep!! It was a rough few months after OHS and I spent lots of time awake in the middle of the night. I feel for you Jill.

Meredith Bray  What if...you really build a nice little sleeping nest for yourself that supports your body AND you extremities? I found the sleeping in my chair was just alright...but when I added extra pillows:
1. Under my arms to relieve the weight on my shoulders
2. Under my knees to give me a little freedom of movememnt
3. Under my neck, so I could sleep in a reclined position without expending energy holding my head up

These the pillow positions helped me really relax and at least get a few good hours of sleep during the day.

The restless leg syndrome though - oy. I know I have a reaction to atorvastatin-if I take it too early my legs are bouncy bouncy all night long, but if I take it right before I fall asleep it doesn't bother me. Is there a chance you are taking a maintenance medicine that is causing the RLS?

You should be able to ride your bike again soon, within the next few months I would think!
-Meredith

Rita Savelis  Hi Jill, I'm from Oakland, California but I've lived in Paris, France for over 20 years (my husband and children are French) and that's where I had OHS...

Jill Dahl  Rita, Nice to know you get around. Paris sounds like a lovely place to live. At this point, I can only imagine the beautiful things you experience there. We in America are very insulated from the rest of the world. I don't think we get it in how things like surgery are handled in far off lands.

Medicine in America can be too specialized and corporate. I am seeing more and more of this even in our small communty. Doctors are no longer given the time to get to know or even converse with their patients. I felt like they are mechanics doing their job and getting on to the next one. PA's are becoming the norm when more actual doctors should be hired.

This has to be frustrating for doctors too. But because they so specialized, I believe they need to work in teams. As an example, my jaw hurt for a long time prior to surgery. My pain doctor tried neck epidurals and a nerve block. My jaw pain is pretty much gone post heart surgery. Was it angina? I don't know. But I believe another specialist would "find" something else to blame it on. Heck, my pain doctor didn't even know how to use a stethoscope after my first OHS when I asked him to listen to my lungs fearing I might have fluid on one.

Made me wonder how other health systems around the world handle patients. Something is amiss in the US.

Rita Savelis  The good part about France is that there is care for everyone, and I didn't have to worry about cost or about having paid time off work. In the USA there is great care for some (with the right insurance) but for others it's not an option. Here in Paris there is much less "marketing" of doctors. But, doctors are overworked and not all of them have time for patients and their questions and specialists are too specialised, as you say. One has to be ones own advocate.....which is hard when you're ill! It's easy to feel very critical of the system after you've been through it with a hard experience. No one has time as you say to get to know patients. I remember some interns standing by the hospital room door so they could get out fast. Others (women!) sat down on the bed even if only for a few minutes. That made all the difference.
The French medical system is struggling with too many patients and too few doctors, nurses, and resources as well.
One thing I have noticed is that there are more and more female doctors and surgeons. I was treated by several female cardiologists and had a female second surgeon. The feminising of the profession is very positive for a cultural change.

Since patient stories are not part of the system, I think it is important to write out your experience - so that your narrative becomes part of the experience and the report of your surgery. This is one of the ways to take back the experience and make it yours and be heard. Writing everything out was very healing for me.
Take care Jill.

Anna Jones  My cardiologist has put me on Atenolol and Lisinopril. The combination dropped my blood pressure so low I starting fainting. He took me off the Lisinopril and halved my dosage of Atenolol. Since then I haven't had any trouble with blood pressure and the cramps in my legs have eased.

I'd call and see what cardiologist is taking his patients instead of seeing the PA

Wanda Mroz  I was never on any BP meds as that is not an issue for me, however, metoprolol does play with my normally lower bp and sometimes did drop it too low. Currently while on another a flutter med, my metoprolol was discontinued since it does tend to drop my BP lower.

Catie B  I'm sorry that I can't contribute about those meds, except for still being on Metoprolol. I hope there's a way for you to get more sleep soon. I've long struggled with insomnia and know how hard it is to function sleep-deprived. Best to you!

Marie Myers  Hope you get some relief on sleeping. It is so exhausting without good sleep. I found that temazepam 15 mg helps me. I also found that I can no longer nap in the afternoon. After a certain point post op, I found I did not sleep well at night when I napped. As far as the metoprolol, I have been tolerating 12.5mg twice a day well. I did not have hi BP preop either. I think they have me on it to nudge my heart into working a little less hard.. Wishing you all the best in your recovery!

Barbara Wood  Also on 12.5 mg metoprolol, no history of high bp. I had a terribly hard time sleeping at night for a few weeks after surgery. I didn't take anything for it, just napped during the day. After I was able to sleep on my side, I started sleeping normally. Hope you get some relief soon, sleep deprivation sucks! Best wishes on your recovery:)

Meredith Bray  I didn't sleep through the night for about 6 weeks. I took several naps throughout the day. I was on metoprolol for 6 months. And what Barbara Wood said - once your sternum is healed sufficiently for you to relax comfortably in bed is about when you get closer to a regular sleeping schedule.

Jill Dahl  Thanks again. I am almost five weeks, next Thursday, into recovery and get an x-ray of my sternum tomorrow. I hope it looks good. I have been sleeping on my side since the beginning as I ended up with a partial sternotomy instead of the whole thing. They were going to do a bypass on an extra regas (?) artery I have on the right side of my heart. Most people don't have it. The doctors decided the blockage of that artery could be managed with medication. But seeing as my cardiologist didn't see me after surgery, I have to wait until Jan. 24 to find out about that. Turns out my cardiologist wasn't on vacation and turned me over to a PA because he was busy. That angered me and I did let him know that move wasn't appreciated, especially just after surgery.

I am finding that doctors in our area are spending much less time with their patients. Does anyone feel that way? When I had my angiograph, the surgery was packed with people. I guess hospitals are against hiring more cardiologists and doctors and go the PA route. How do you all feel about that? After my angiograph, the surgery recovery area was so loud, especially the guy next door, that I couldn't even hear my doctor when he finally came by after I asked to see him. The conversation didn't last long as he got a phone call and was off and running.

Tomorrow I do see my surgeon, if I haven't mentioned it before, for an EKG and x-ray. So hope all that goes well. My sternum feels good. A little sore but getting better. I think some of that is from walking and breathing deeper than usual. We walked two miles yesterday. I am tired today.

I hope you are all feeling good, strong and healthy. I so appreciate your input. I have been so blessed with all the people who have cared about my well being. Humanity can be so wonderful. Thank you.

Bonnie Stone-Hope  It may be the time of year, plus the effects of surgery on your body.
Most likely tears of joy, relief and thankfulness, all good!
So happy to hear all is well.
Have a wonderful holiday season.

Marie Myers  I was like that ,too, for the first couple weeks. I think we forget that It is a huge surgery, and it is an emotional journey. The emotions and tears settled down by week 3 for me. The holiday time frame probably adds to the emotions. Glad to hear you are on the mend!

Rose Madura  We're all so different! I was so scared from all the complications that I don't think I had time to cry. But the whole OHS journey is definitely very personal and emotional. I tend not to cry too much (growing up with five tough brothers and no sisters) but have had a couple bouts of teariness. Glad you are doing so well.

Jill Dahl  What an emotional roller coaster. You are right. I am so thankful my recovery is going as well as it is. These past couple years with two back surgeries got me to wondering if anything would work out and then came a second AVR!! Scared the heck out of my husband and me. I am so fortunate he was willing to come along for the ride. What a man.

Rita Savelis  The tears happen now because you had to hold it all in to get through surgery. Now there is the emotional release. It was hard. Hard on your body. Hard on your psyche. The tears are there to mourn all that you've been through as you move forward. Acknowledging is important. How could one not feel overwhelmed with emotion? Plus, your whole system, including your hormonal system, has been touched, so things need time to settle.
I'm sorry you had to go through 2 back surgeries and 2 AVRs. That's more than enough.
Wishing you some peace and rest this December.

Gerald Poulton  Hi Jill, obviously I cant help you from personal experience but hopefully this article can. Goodluck 👍
http://www.ucalgary.ca/news/october2006/unique-bra/

Rose Madura  Jill the hospital provided me with a surgical bra which was great for me. I don't need a ton of support so it was perfect and comfortable. Maybe you could talk to th ed cardiac nurse prior to the surgery.

Kathi Mancuso  I had the same questions pre op.
I was told and woke up with an elastic type of binder put on immediately after surgery.
This stayed on during my hospital stay.
The Dr / nurse helped me find online a post surgical bra. I was very doubtful of it but ordered it anyway. A modest 40.00. Omg what a lifesaver and very comfy !!!!i ordered a second on e also.
It came from Amazon and just search Anita surgical bra. It looks like a sports bra and buttons up the front.
I love it and will be wearing for a long time !

Wendy Evans  I'm a D-cup and using a bra was a great help. They gave me one in the hospital to go home with, but I needed more support. I got a good front closing support bra at Kohl's and it has works well at keeping the girls up and the soreness down. What also helped was using salonpas with lidocaine on my breasts away from the incision. Those muscles hurt worse than the incision. The downward pull was the most painful.

Jill Dahl  Thank you. It is hard to know what to order. I talk to the hospital office and the hospital doesn't use them. She told me to order a couple and try them. Sharon thought if it worked out, the IHI might decide to use them. Which hospitals use them?

Lilly Black  Jill, I wear 36D and found that wearing a very soft bra was helpful. My incision was 12 inches long so I needed comfort, support and softness. But the bandeau type bra was great! No straps just a wide band supporting my breasts was super helpful and easy!

judith monti  just had mitral valve repair/ablation on Nov. 29. I have not been wearing a bra period. Even without a bra by incision under my breast is sore. I am a 34 C so not large. I have been wearing tight exercise shirt, not a short bra type but a long exercise top. No one gave me a bra after surgery. Good luck to you