Jill 's Journal

Catie B  Migraines had stopped for me at menopause but they came back after my surgery. I still have auras, occasional migraines and other visual episodes 2+ years out.

Lisa Guinan  My sister had ocular migraines occasionally before surgery but more often after. I’d never had one but have had a few since surgery. Oddly enough my sister had one while we were at rehab today. I had one right after. It’s probably been 2-3 weeks since I had one.

Dan Baltazor  Hang in there! You're only 2 weeks out, it gets better. I'm still not laying flat at night, but I'm back in bed. One day at a time.

Lisa Guinan  I’m just now getting to where I can sleep in any position. Could only sleep on my back at first. (Not fun for my husband-I’m a snorer). It was around a month before I could do sides. I also took Advil PM to help with those nighttime aches. Keep up the exercises. I think that helps a lot.

Meredith Bray  The back/neck/shoulder aches were the WORST for me. My PT gave me the solution - use excellent posture when you are standing, and support your head & neck when youa re resting. Even in a seated or reclining position, you are spending a LOT of energy on holding your head up. Those muscles need some rest also, so try using a travel pillow for a few weeks. I find that even 5 years later, I still get much better sleep when my neck is supported.
Try not to curl your shoulders in - a natural response to protect your chest area. Shoulders back, chin up, stand tall. I hope this helps, I was miserable for about a week-the pain meds just couldn't cut through the back.neck aches and I didn't get any real good rest/sleep until I supported my head/neck/arm weight.
Laying flat? I felt all sloshy and suffocated for about 6 weeks. I still don't like to be flat. I think I rolled on to my side slowly at about 3-4 weeks.

Meredith
Holiday, FL

Jill McDonald   Thanks guys. I think I have made progress since last week. I am scaling way back the pain meds. They really don't help. Going yo try Ibuprofen for the ache. Now on to looking at cardiac rehab places.

Lisa Guinan  Glad you have a nurse checking on you. That will give you some peace of mind. Make sure you walk. That will help your recovery.

Jill McDonald   Thank you guys! Being home takes some getting used to. However my sweetest tidbit is my temperpedic bed that goes up at down. Truly magically. Never used the function. Now, it's priceless.

Lisa I did read that article while in the hospital. Praise the lord!

Judy S  So great you have a bed that works well for you at home. That should help you get lots of rest for a speedy recovery!

Catie B  What wonderful news about the repairs! It's so good to hear that you are on the mend and have been up, walking!

Lisa Guinan  So glad they could repair it. I’m sure that’s a huge relief. Go read Adam’s blog post from Dec 4. It’s great news for us.

Mary Cole  You have given me the strength to have this done very soon...I am here in Floirda heading to the Cardiologist Wednesday Dec 19.....So glad i found you ..and see how terrific you are doing.... I’ve bee reaaly scared.....unitl today......wow...you... are amazing and give me the courage to push on through...Merry Christmas!!!!!!!!!!

Susan Lynn  Jill - you're going to do just fine. The day of surgery will fly by - the surgery feels like it happens in one minute. You'll sleep for the majority of the evening, too. Think positive thoughts - everything will be perfect! ❤

Civita Fahey  The last few days before surgery are hard, but, try to stay positive. I know on the day of surgery, I awoke with a sense of calmness.. I wanted it over and be on the other side.. Keep your faith in God and your team., you will do great.. prayers coming your way.. This is the best site, all the wonderful people got me through my OHS and still are there today!

Steve Corkhill  Good luck Jill. It's a bit scary but you get through it. I used to mutter "This too shall pass" every time I felt rough. It worked for me, because whatever the situation, it gave me the expectation that things will change. And they do - every time.

Dan Baltazor  Prayers for Peace over the next few days. It can be a roller coaster. You can do this and focus on getting to the other side.

Lisa Guinan  Go shopping. I don’t even like to shop but somehow it made me feel better. Get yourself some comfy lounging clothes to wear when you get home.

Don L  Hi Jill, I just saw your post and had not been on site for while. I had a very complex(and succesful) Barlow mitral valve repair, not other complications similar to yourself. My surgery was end of March this year, and it is a distant memory and I feel better than before surgery(did not think I had any symptoms, but looking back was more tired). You will do great and feel better each day post surgery. Good luck and happy to answer any questions pre/post!

Jill McDonald   Thank you all for your encouragement. I am almost done with work. I am ready to focus on the task at hand to better health. Don I too hope I find that I feel much better. Lisa, I actually did shop today. Wandering around a dollar store made me feel normal. Steve, I say that as well as this trial too shall pass. Civita and Susan I keep hearing everyone say it is not as bad as they imagined. I am thinking in these terms. Trying to keep focused and preparing the best I can. We need to leave at 4:15am for the hospital on Friday. It will be a short nights sleep. I think that will be a good thing! A friend told me recently, Jill you are a brick wall, you can do it!

Louanna Miller  Jill, you will be glad you had the surgey in time. Some of it was tough for me and I realized we are all unique in how our bodies respond to surgery and heal. Give yourself time to face each step of recovery and healing.

I had to be at the hospital at 5:30 and that was great for me. Less time to think about it. You’ve got this!!! Praying for you.

Sara Moyce  Best wishes to you Jill! I am 8 days post-op and continue to feel a bit better each day (baby steps!) I envisioned God's hand's surrounding my surgeon's - and gave my trust and fear to Him. I also have found this site so incredibly supportive and crucial. On my morning of surgery I literally thought of all of those before me on this site, and that we are truly Team Warriors!! I look forward to hearing about your recovery!

Mary Cole  So happy I found all of you wonderf people..... I have been a ball of nerves since i was told I had to have this procedire.... and now I have others who are walking the same path....!

Mark Jaycox  Jill, I just did everything you did this week. I chose the new Edward’s Tissue valve since it’s supposed to last 25 years. If I ever need another one they can go through the groin. My surgery is Tuesday so good luck with yours.

Jennifer Barnett  Hi Jill,
It's a difficult choice. i was 54 at the time of my surgery and went for a mechanical valve simply because I didn't like the idea of potentially a couple more surgeries. It isn't too bad taking the warfarin, it can be an inconvenience having regular blood tests but once your INR blood levels are stable these are many weeks apart and managing your diet becomes easier, you do always remain cautious about certain activities so as not to get injured or cut yourself, I slipped over in the kitchen a few days ago and have a huge bruise and lump on my arm which is alot worse than it would be had I not been on the warfarin. However I generally find it is fine being on the warfarin it just needs to be well managed. It's a tricky decision which is harder at this age because of the potential repeat surgeries. Good luck and hopefully yours can be repaired.

andrew laymon  I've decided on the bovine or pig tissue. I originally planned on a mechanical valve, but I changed my mind due to the warfarin for the rest of my life issue. In the future, TAVR will be a good option to replace my valve when needed.

Jennifer McInerney  I did a tissue vAlve and it was the right choice for me. My INR levels still aren’t stable. I’m eight weeks post op and still doing weekly blood tests. I come off warfarin in January and I have to say will be glad to do so. I will be able to have valve in valve surgery if, and when I need another one. I’m 64 and both the Surgeon and Cardiologist discussed the choice in detail with me.

Dan Vechiola  I went with Edwards Ispiris Resilia tissue valve. My surgeon and hospital, Northwestern Memorial, aren't really using mechanical valves much anymore due to the projected longevity of this new valve and because its made to have a TAVR valve fit right inside when it wears out. Every decision is a personal one so good luck and let us know what you decide.

Lisa Guinan  I believe some tissue valves aren’t an option for mitral replacement. Both my surgeon and cardiologist talked pig valve at the beginning so as not to be on blood thinners. Then the day before my surgery, my surgeon said he recommended mechanical due to my age. I almost fell off my chair. I told him I preferred pig. He also said bovine wasn’t used for mitral. Luckily, he was able to repair, which I bet will be the case with you. That was the first thing I asked when I could talk after surgery—repair or replace?

Dan Baltazor  Great news on no blockages. I'm 44 and chose the new Resilia tissue valve. It's the valve I truly felt at peace with. Good luck to you and hopefully you'll be lucky like the others and a repair is your fate.

Karrie Irby-Williams  My son has surgery Monday .. praying for repair and same as you surgeon thinks it can be 70% chance. If not he will have Ross procedure using his own pulmonary valve and a human donor at pulmonary site. But if pulmonary valve isn’t usable plan C is to go with tissue vs mechanical. Pig valve like mentioned above and must be same kind because he said TAVR if needed in future and it would fit inside. His involves aorta valve

Cathy Garziano  I also chose the tissue valve. Same reasons you did and I also have beat up kidneys. Blood thinner for life is a bad idea for them. Also...I can't with the hearing the mechanical noise. I'm too noise bothered! My date is 12/4...a few days before you! Hoping all goes well for you...and me!

Rita Savelis  I've got atrial and mitral mechanical valves. Surgery at 54. A third valve, the tricuspid, was repaired. I had too much damage from childhood cancer radiation so my heart was a mess with scarring and stenosis and re-surgery not advised. Living with mechanical valves is fine with an adjustment period at the beginning. I eat what I want, do the same things. Get my blood tested once a month. I'm not recommending any kind of valve, just saying that people live fine with all kinds of valves. One never really knows how long any valve will last or what the future will hold. So you just make a decision and move on, and don't look back. Trusting your surgeon's advice is a good idea, as hopefully you have a surgeon you trust. Take care.

David Moore  Hello Jill - This is Cheryl, David's wife. They let me and my sister-in-law in to see David in ICU as soon as he was stable. It took them about an hour after closure to get him moved and all hooked up. I was allowed to stay in his ICU room as long as I wanted but I had to be awake. I couldn't sleep in there. He was in ICU for two days and sedated the first day to allow his body to rest. If your children are really young it might be better to wait until you are in step-down. There are a lot of lights and beeps and monitors in ICU that can be distressing if you don't know what's beeping. Hope this helps - God bless you! - Cheryl

  Hi Jill!
I had mitral valve repair done on November 19.
After my surgery was completed my surgeon (Dr. James Gammie - University of Maryland Medical Center) came out and told my wife everything went well and all that he did in repairing my valve and that she could come to the cardiac ICU in about 30 minutes to see me, which she did, although I was not aware she was there because I was still kayoed by all the anesthesia given to me during surgery.
So it's not long at all before family can see you, at least not at the hospital where I was.
My wife and sister-in-law spent the night there in CICU in my room. The room was huge! UMMC (University of Maryland Medical Center) really went above and beyond to accommodate my family. They brought my wife and sister-in-law blankets and pillows so they could sleep as comfortable as possible. (my wife slept in the hospital recliner chair while my sister-in-law slept in two chairs put together to form a makeshift bed)
At the hospital where I was they allowed only two visitors in the CICU room at any given time, and no small children, for obvious reasons. In CICU you will have tubes, lines, and wires coming out from various places. Probably too traumatic of a sight for kids to see. The policy may be different at other hospitals, idk.
As far as day one after surgery, I think it's different for everyone. For me, my first night in CICU was not good at all. I was in LOTS of pain. The next day following surgery (still in CICU) was a bit better. But again, everyone seems to have their own unique experience so it's hard to say how your recovery will begin or progress, although I do hope you have a very smooth, total and complete recovery.
Peace and blessings to you!

Louanna Miller  My husband was called by my surgeon and given a report upon completion of my mitral valve repair in August. He was allowed to come see me about an hour after I was taken to cardiac ICU. Two adults were allowed at a time, so my parents and sister took turns while my husband stayed with me the entire time. I was very sedated from morphin, anesthesia, etc, and could recognize their voices. They were unable to take me off the respirator for about 8 hours. They had to get my psi. Under control first.

No one was permitted to spend the night in ICU at Northwestern Medicine in Chicago. Children under 16 are not allowed either.

I was in ICU for 2 days then moved to the cardiac step down floor.

Paul Howarth  Hi I'm day three today.
I'm Paul. 50 year old male
aneurysm possible root/ valve.
I have a log book. I will tell you what I have written so far.
Day zero goal. Have procedure- Wake up 😊
I did thank god. I don't remember the tube coming out or waking up:
I remember the ICU with my wife.
Night one was sleepless but comfortable. ICU has the really good meds.
Day 2 was easy during the day. I sat up and walked. Had trouble getting comfortable and in the middle of the night my lungs collapsed. I was already in a regular room.
Like 9 people rushed in at once but they fixed me gave me mesa to calm down and I fell asleep. All I can say is use that breathing machine a lot.
night 3 I got good sleep.
They took my tubes out before bed and I felt so much better.
The wires, tubes and such all came out with no pain. So look forward to their removal. It helps so much.
For me everyday has little set backs but them you bounce back and make small gains. Walking helps so much.
It's not nearly as bad as I thought it was going to be.
The Dr. Repaired the valve
So I thank God he was gifted enough to repair my valve.
I'm so happy it's over. I was dreading it the 2-3 days before.
At some point you will need to turn over all control to your team and let them do their magic. Thank god for the skills and dedication of these doctors and staff.
It's not as bad as you think it's going to be.

Dan Baltazor  Paul, great to hear from you. Welcome to recovery. You describe it well. Stephanie and family came into Cardiac ICU post op while I was still out and intubated. They returned a few hours later and I was extubated, however they wanted my family’s visit to be On the brief side.

Jill McDonald   Cheryl, Jeremiah, Dan, Louanna, and Paul, Thank you so much for your feedback. Tomorrow is pre op and cath day. Trying to find peace as we get closer. This helps tremendously. I told my husband I do not want the kids to see me with the tube. Kids are 28, 25 and 20. Not little but not sure I want them to see me in that state. Blessings to you all and Paul day three keep moving forward! Blessings! Look forward to being part of your club!

Tracy Fallu  Hi Jill-
I had a Mitral Valve Repair November 28. Remember “waking up” about 4 hours after surgery. I was groggy, closed my eyes, drifted in and out of sleep for several hours. My husband, parents and my 2 children, 21 & 29, were permitted to visit about an hour after I arrived in ICU. The visit was limited to 2 at a time for 5 min through the first day. There were times I was aware of someone in the room and times I was not. I had the breathing tube in for about 10 hours, during the last 2 hours when the med team was a bit anxious for the tube to come out (I wasn’t staying awake long enough to work with them), my husband later told me family members could not be in the room. Where I had my surgery, nurse to patient ratio is 1:1 with the nurse in the room 24/7.
I spent 5 days in ICU. The care I received was exceptional.

Anders Carlos  Others have done a great job describing day 1. I had surgery around 0830.My wife and mom were allowed in to see me around 2 (I had a Ross so it was 3.5 hour procedure). I was intubated but was able to respond to them (squeezing hands in response to a question). I was fairly quickly extubated (surprisingly the tube did bother me which was a worry prior to surgery). I was interactive but sedated (nodding in and out) by 3. I had surgery out of state so my kids (7 & 12) were not there but I think it would have been fine for them to be there. It might be wise to prep them for the number of machines, tubes, and wires. That could overwhelm a lot of people. I was in the icu for 2.5 days before moving to a telemetry floor. My wife ended up
Staying every night. She was not supposed to but she insisted and staff did not throw a fuss. She slept in a chair and was very happy to get a fold down recliner once we moved out of the icu.

Lisa Guinan  I think every hospital is different on visiting rules. I had about 8 people waiting during surgery. They were all allowed in to see me at once after I was in recovery and stabilized. I remember them being there. After that I was allowed 2 visitors for 10 min every hour. My husband came back for the first hour visit and then left and came back later for another visit in the evening. The next morning I was doing well enough that they let him stay with me until I was moved from ICU, which was around noon. A lot depends on the patient and the nurses.

Susan Lynn  Every patient and hospital is different. Mine had large private rooms in the CICU. My family stayed around the clock for the entire 3 days I was there. I was sleepy, but didn't have pain and my family wasn't traumatized at all. I was specific that they were not to see me until the breathing tube was removed - no one needs that visual picture forever. You'll be fine. Think positive thoughts and clearly imagine everything going exactly as planned. You can do it!

Dan Vechiola  I remember waking up in the afternoon from this beautiful colorful dream. When I looked at the clock and the ICU room I realized I just woke up from open heart surgery. My 2 daughters and wife came running into my room with their thumbs up with big smiles on their faces. At that moment, nothing else mattered!

Susan Lynn  Yes! That's what I had. Please feel free to ask any questions you may have. I'm happy to help. ❤

Jill McDonald   Hi Susan, thank you for your response. I have only known for 8 years I have this as I was adopted and didn't have my medical history. I did learn about 7 years ago my birthfath too had this condition with repair. However, drs growing said that I had a click here and there. so I was shocked when I was diagnosed with this. My surgeon said now is the time so the heart doesn't get damaged. I have surgery scheduled for Dec 7. I would love to hear what they did during your surgery and how your recovery was for you.

Thank you!

Bill Pollard  Jill - In follow-up to your question on my page, we rented a recliner for a month. It was $200. It has been a big help during the recovery at home, especially the first two weeks. I splept in the recliner the first several nights.

Dan Baltazor  Hi! Joined this website just about a month ago and this has been my only resource since then. You’ll find great information and wonderful people with triumphant stories here. Adam’s book is an excellent resource as well. I’m still waiting for my surgery date, but it’s CLOSE. Welcome and I hope you find the information to help you move forward and find some Peace in the Mountain we all face. Just start by reading everyone’s journals and you’re sure to find someone’s story that looks a lot like yours.

Terry Goin  Jill, I cannot say it any better than Dan did above. I am about 3 weeks away from my surgery. I have seen many people walk down this path through their stories on this site. Peace will come with time.

Rita Savelis  Recovery is different for everyone, but OHS is a big deal and your heart and body need time to heal. Patients are often very tired/exhausted for weeks/months afterwards. But there is no normal, everyone recovers at his or her pace. I think most people are very anxious before surgery. It's a very weird feeling to know it will happen. But OHS is very safe these days, and much more banal than we want to believe, actually. I don't know if there is really any preparation except just moving forward, which you will do no matter what. Adam's book and this site has lots of information. But everyone's experience is different. It can be nice to have a place where you can write and ask questions and be yourself and be anonymous. I have lots of "friends" on this site that I will probably never meet but feel very close to because they had experiences like mine and they said/wrote the things I wanted to hear. It was very healing for me to write down my experience after OHS. One feels more understood by those who have been in your shoes. As far as preparing your friends and family, you do it the way you want to and each person will have their way of reacting. You can't control their reactions. There will usually be some people who are very helpful. Know that it can also be very hard to be a caretaker/worrier for another person. So it is hard to understand what those around you go through. In some ways it's easier to be the patient. Take care. And wishing you the best.

Rob Sparling  Jill, welcome. You will get there! As Dan mentioned, our journals are the place to start. Answers to all your questions are here! You will make it happen and you will be surprised at the end how much courage you mustered! Take your time and let the transformation take place, Heart Warrior! ❤️💪

Louanna Miller  Welcome Jill!! Take things one day at a time. Allow yourself to process what you will go through. Let it sink in. It’s a big surgery. I’m 8 weeks post OHS and still have times where I’m wrapping my head around the fact that I have gone through this.

Ask questions and read posts. We will help you along the way. I agree with Rob Sparkings post and comment about letting the transformation begin.

Everyone goes through this differently and our experience is unique. One day at a time!! Blessings to you.

Jill McDonald   Thank you, everyone! This site definitely helps calm the nerves when I see how many individuals have made the journey before me.