Susan's Journal

Phyllis Petersen  Sorry you're having this setback. Hopefully, you'll have things in control soon and can continue with rehab.

Catie B  Oh, Susan, I'm so sorry you're in all of this pain! I hope the pericarditis can get resolved soon.
I'm having trouble with my left shoulder, too, and can't sleep in bed because of it. Though mine hasn't given me that level of pain. Hoping you can get real relief very soon. You're in my thoughts, and I'm sending prayer.

Shannon Gray  So sorry about this. Pericarditis is a very tricky thing to treat. Please find a cardiologist that understands the length of time you need to be on medicine and how to taper off it. Immediate stopping of medicine causes it to flare back up...hope this helps a little. Thinking of you!

Susan Lyons  Talked to the on call Dr. at my cardiologist office and he agreed that I should take the Colchicine twice a day, he said if I can stand the side effect to take it 2xday for a week. Pain is getting better-not so intense and constant. My cardiologist did mention 3 months as the usual time period.of taking Colchicine. I will see him on the 19th. I did not go to rehab today- doctor told me to take it easy and if I still had pain, skip rehab.

Shannon Gray  Good...so glad you're getting in. I would find out about how to taper of the colchicine at the end of 3 months....crucial since it's not a medicine to immediately go off of. I went down to once a day for two weeks, then I think even 1/2 a tablet for a week. Hoping you find some relief and it will stay away for good.

Susan Lyons  Hi Vicki, sorry I did not see that post before. No, I had a Mitral Valve repair and Maze Procedure. If the surgeon wasn't going to be able to repair then he said he would use a mechanical valve because it would probably never need to be replaced in my lifetime ( I am 63) and a "natural" one, would be probably need replacing when I'd be in my 80's.

Phyllis Petersen  Congratulations! I felt great after my rehab yesterday, but by the time I got home (a mile and a half away), I felt tired and shaky. It took over an hour to recover. Monday, I went from rehab out to breakfast, but then still needed to rest. Just listen to your body. I'm tryiing to do a walk on the inbetween days, giving myself at least one day of total rest, usually Sunday after church. Good luck heart sister!

Susan Lyons  Thanks Phyllis-wishing you the same. Now if a good night sleep will start happening again! Thinking of buying Melatonin and trying a low dose...

Steven A Husted  you will do fine just take your time slow and easy a little bit at a time your body will let you know when to stop and when to go on and yes your body needs rest to i still take my nap every day best wishes and prayers for you

Susan Lyons  Thanks for the encouragement. The rehab nurse was wondering if I wanted to start while I have the pericarditis but I assured her it hadn't been bothering me with the med. I shouldn't have said that -it was uncomfortable today. I do want to start rehab though and if I have to take a break, then so be it.

Phyllis Petersen  Psychologically it should be good to start reclaiming your life. It may also helping in healing as long as your doctor says it's okay. They monitor your heart and work with your condition so they won't push you too far. I'm excited to get started too.

Meredith Bray  Enjoy the coffee! I remember looking forward to enjoying more than 1/2 cup of coffee a day. Pre-surgery, that's all I could handle.
Regarding temperature changes/nightsweats - unless it's your turn for "the change', I would say it's normal post-op behavior. My body took about 3 months to re-learn temperature regulation.
Glad you enjoyed the concert & dinner, it's nice to be "back to life", isn't it!

Rita Savelis  Temperature regulation can be really off for a long time after OHS (the thyroid is very affected, as are so manyof your organs...). I was freezing all through summer.
Hang in there. Take care. And enjoy the coffee!

Shannon Gray  Many prayers... Please consult your Dr's as to how long to be on the meds as well as how to ween yourself off the colchicine when it's time. Very important to set up a tapering schedule. Wishes for a full recovery.

Meredith Bray  www.goodrx.com might be able to help you find a lower price! I've used it several times and saved hundreds.

Susan Lyons  Yes,my brother did tell me about goodRx and it is now on my phone-Walgreen's=much cheaper! Thanks all for the prayers and wishes. Pain is much more tolerable now.

Darlene Smith  I was on colchicine as well. My pain was in the same exact place!! I feel for you! That pain was worse than the surgery itself. Hoping the fluid resolves quickly!!

Catie B  Oh my! I hope you are starting to feel much better, Susan. It sounds like you've been through quite an ordeal.

Lila Richards  Actually nobody told me that and in the hospital I was allowed iced tea with my meals. I also had nurses that were bringing me cups of regular coffee every now and then!

Steven Dean  they literally brought me coffee with my first breakfast in the step down unit (I didn't start drinking coffee again until a couple weeks after surgery). Every surgery and condition is different so run it by your cardio.

Chris Vereb  Well heck they were bringing me coffee with my food in the hospital...lol. My experience with the heart rate, is it will take a while to come down. I drink regular coffee almost everyday. If you have a heart monitor you can train your heart to slow down. Breathe in slowly for 5 seconds and releasing slowly, you can watch the rate slow dramatically.

Phyllis Petersen  I was brought coffee with my first meal as well (although I'm a tea drinker) and my sister was bringing me a nice sized cup of chai each morning.

Ellen Leng  I got only decaf in the hospital and avoiding caffeine (miss my dark chocolate!!) as I have afib concerns. Talk to your doctors.

Susan Lyons  Thanks for the feedback. The AFib seems to be happening less and less so happy about that. I will see my cardiologist next Thursday so I will ask him.

Peggy Whitecotton  I was not allowed caffeine after OHS. I had caffeine sugar free tea, decaf coffee and diet caffeine free Pepsi.. I was told that caffeine could make your heart race and could cause Afib. You have a 30% chance of going into Afib after surgery and my doctor did not want to overwork the heart.. Your Heart already is doing fiplops and traumatized from surgery, so they try to keep from overloading the heart. I had aortic valve replaced with bovine and never went into Afib. My sister had her Mitro repaired and went into Afib, ended up with a permanent pacemaker and had to be put on Coumadin for the rest of her life..

Rita Savelis  I have never given up either one. They were served in hospital (where I stayed for 7 weeks). My heart rate is high, but I never notice coffee making a difference. I try not to drink too much - between 2 and 4 cups a day.
My heart rate was down as long as I took betablockers, but now that I'm off them, it's high.
Coffee really has little to do with that.

Peggy Whitecotton  Sorry but coffee can affect the heart, research it. Caffeine is a stimulant and effects the nervous system. It can increase blood pressure and increase heart rate. My doctor did not want to add anything in my diet that could possibly effect my healing heart. I complied with him and as a retired nurse knew he was right. Having worked many years on night shift my coworkers and I drank coffee and ate chocolate to keep awake and alert.

Vicki Hake  Susan, I was wondering if you had the mitral valve replaced and if so, was it mechanical. That's a decision I have to decide on by next month. Thanks❤️

Lila Richards  Yay Susan! That's fantastic!, and this is encouraging! Are you starting to feel less pain in your sternum bone? ❤️

Susan Lyons  Yes!! The feeling of sternum pain didn't last long. The collar bones were achy and some muscular discomfort. I haven't taken pain pill for 3 nights now,accept for a Tylenol a couple of nights ago. I now feel comfortable sleeping on both sides which makes me happy.

Phyllis Petersen  Sounds like good progress. Some days I have a hard time pushing myself (today is one). Then, I try to just do even 5 minutes or even just walking in place while watching t.v. Every bit will help to keep you moving forward to full recovery.

Susan Lyons  Oh, and today I hit 2000 on the spirometer! The PT told me I would eventually get to 3000 and I thought she was nuts but now I can see it as a real goal. Don't think I've ever breathed deeply-I might learn how at 63!

Phyllis Petersen  Good going! They gave me a PEP therapy system instead of the standard spirometer. It works a bit differently.

Peggy Whitecotton  Oh Susan... Don't be discouraged, I had shortness of breath for about 3 months the first 6 weeks was very bad. My feet were so swollen they looked like stuffed sausages. Like you my 02 sats were good. Even talking would make me breathless, I couldn't do things like comb my hair let alone use a hair dryer. I had to depend on my children to help me, that was hard as I had always been proud and independent. OHS recovery is a very humbling experience let me tell you.. When I was about 4 weeks post-op I began to cry a lot and really felt like I had made a big mistake having this surgery. When I saw my surgeon the following week he was so sweet, spent a long time talking to me, listening to my fears. Everyone's recovery is different, in my case, my heart was very bad.. If I would have gotten to him sooner my recovery might have been easier. Most important Susan, I remember him saying that the heart has to do some remodeling, in other words your heart has to relearn how to work with a normal working valve and that could take 9 months to a year for the heart to fully heal and it will go through many changes (at least mine did) such as heart pounding or racing. Your surgery itself 2 or 3 months to heal but the heart takes longer. It's has been 14 months for me and I feel great and have so much energy. I saw my cardiologist today and he is so please of my progress, no heart Murmur. I will have my yearly echo next week but expecting a good report. So hang in there you will make it. Remember your new heart is a miracle and you have been given a second chance to live. God bless you!!

Catie B  Peggy, your experience is encouraging for why adjusting and healing may take more time than expected. Thank you so much for sharing.

Phyllis Petersen  Susan, Give yourself a break! I'm two weeks out today and I still have some phlegm and breathlessness, but I'm amazed at all I can do. Two weeks is not a long time to recover from major surgery. You'll get there before you know it.

Roseline Rosario  Keep using your spirometer...that's helped me enormously. I have asthma and of course I'm not there yet but am also 16 days post. Keep inhaling and exhaling!

Susan Lyons  Thank you all for the encouragement. I am pretty independent and it isn't easy to be in this state of dependence. Home nurse was here earlier and said everything looks good. I will keep plugging along. THANKS again.

Corey Sines  Lol, on the Output comment! glad to hear your surgery was successful and your recovery is progressing well.

Ellen Leng  Glad you're feeling better! I do remember the output issue, felt just wrung out :), this too shall pass.

Corey Sines  Crazy sometimes, how things line up and present themselves, and all of a sudden you are planning for Surgery!

Susan Lyons  Yes! but today I am hoping what I am feeling is allergies and not a cold. Can't take allergy meds,so hoping that's what it is...

Phyllis Petersen  The diagnosis is scary enough, but this waiting is so difficult. When they see the results, things may get moved up. I had a hard time getting appointments at first, but my cardiologist pushed things and got me in a month earlier for tests. Then waiting for word from the surgeon. I went and bought a ticket to a rock concert ... that worked. Two days later I got a surgery date: 3 days before the concert. Hahaha. Hopefully, the meds will give you some relief.

Susan Lyons  Wow, my cousin,son and I have Guster tickets for November 18th. When my cousin bought them I didn't have a date and I was afraid to buy but she thought it was thinking positive and gave me something to aim for! Thanks Phyllis

Phyllis Petersen  I wound up selling my ticket to my brother-in-law. Maybe you'll have to do the same. I was just happy to get a date and get moving on this. Sadly, there are some good bands I'll be missing, but this is much more important.

Catie B  I'm sorry it's not giving them data as hoped, Susan. Not knowing is hard. I hope things get clearer soon.

Catie B  Welcome, Susan! I'm sorry you're suffering and have such a long wait before you can see your surgeon. I hope the days pass quickly and that your symptoms ease up.