Kimberly's Journal

On, November 11th I had my bicuspid aortic valve repaired and an ascending aortic aneurysm repaired with a dacron graft. Recovery has been smooth and I have had no issues healing. I went today and had my first post-op echo. I was disappointed to learn that my valve is already leaking moderately again. My surgeon, Dr. William Ryan, had said after the surgery that his hopes were that the repair would last at least 10 years before I would need an actual valve replacement. My valve was leaking moderately before surgery...so really there has been no change except that I no longer have that horrible aneurysm. I was hoping for better news from this first echo, but overall I am trying to remain positive and appreciate any time that I have with my own valve before I need a replacement.... and hope science quickly advances so when the time comes I don't need another full sternotomy again!!!

I have gained 6 lbs in the last two weeks. This is very unlike me! I don't know if it could be from the metoprolol or what, but I put a call in to my doctor's office. I know that is a concern right out of surgery... not sure if it means anything this far out. Anyone else have a weight gain post op? It's a decent amount on my 5'4" frame . Ugh!

Today I hit 12 weeks post op! I am feeling great and have more and more energy as the weeks pass by. I would say I am about 95% back to normal and feeling GREAT! I no longer feel like I have been hit by a bus mid-afternoon and need a nap like I did before surgery. I can walk up stairs and inclines without being short of breath. And, I am SO HAPPY to know that the ticking time bomb... my ascending aortic aneurysm... is GONE!! A fading scar is the only reminder of this massive surgery I had 12 weeks ago and am so thankful to be on the other side of! I have my first echo in 3 weeks and am looking forward to that very much. To those of you waiting for your turn: you can do this! You will get through it and before you know it you will be counting out the weeks just as I have been. Weeks 1-3 are the roughest and after week 6 things get so much better. Having this behind you and a new lease on life is worth all of the pain and discomfort. I wish you all the best!! :)

I am 11 weeks post-op and feel great! Sternum pain is nearly gone even when I sneeze. I didn't think twice about going to the range today and shooting an AR 15 and pistol....but I am fairly sore this evening. I told a few people I went and everyone was shocked I did it this soon. Soooooo of course I googled it and all the advice was no shooting rifles until 6 months. Granted I wouldn't have even considered shooting a shotgun, but i am wondering if I messed up by shooting the AR. It has minimal recoil, but enough to feel. I will definitely call my doctor, but I am wondering if anyone has any experience with this. How long you waited? What your doctor advised, etc?

One thing I didn't mention in my recent post was that I still am having night sweats several nights a week. Any else experience that this far out? I remember reading it was very common the first few weeks.

8 weeks ago today I was opened up to have my bicuspid aortic valve and ascending aortic aneurysm repaired. I am feeling really good... I would say about 85% back to normal! The pain in my sternum drastically minimized around week 6. I still have lingering pain in my shoulder blade that is causing a lot of discomfort down my arm and in my elbow... I think it is a pinched nerve. I have been off all pain meds for weeks now and am down to 12.5mg metoprolol 2x/ day and 81mg aspirin. I am enjoying being able to walk far distances without becoming short of breath and exhausted! I am also a lot less tired throughout the day than I was pre-op - I always required a 2 hour nap, daily. My incision is still sensitive, but around week 7 I finally was able to start wearing clothing over it. It is truly amazing what all our bodies can endure and bounce back from. Recovery is definitely a marathon and not a sprint... it takes time and patience... but it is so worth it!!

Curious if any of y'all ran into this during cardiac rehab.... My surgery was 11/11 and I started cardiac rehab during Week 5. Because of the holidays and scheduling conflicts, I have only completed 4 sessions. Now, the year has started over and my insurance is such that I have to meet my deductible ($3500) before they start covering the expense. My cardiac rehab schedule is 3 days a week and I hate to drop out, but I also can't wrap my head around spending $100+ PER session. That adds up!!!! Did anyone else run into this?? If so, what did you do??

Curious how long after surgery y'all waited to go out of town overnight? I managed to ruin opening weekend for my husband with my 11/11 surgery date...so I was hoping the weekend after Christmas we could go hunting at our lease 3 1/2 hours away. I will be 6 1/2 weeks post op. I haven't asked my doctor yet, at this point I am just wondering if it is a ridiculous idea or actually a possibility.

My surgeon told me a few days ago I was fine to have a glass or two of wine. As I sit here thoroughly enjoying my second glass at 3 1/2 weeks post-op, I am curious how long y'all were told to wait before drinking alcohol. I'm currently on 325mg 2xday of iron, 18.5 mg of metoprolol, 10mg of lexapro and 81 mg of aspirin.

Exactly one year ago today, I found out about my leaking bicuspid aortic valve and aneurysm. Today, I am three weeks post op. I saw my surgeon today and he did an x-ray which showed that my previously collapsed right lung is almost back to normal... it's not there yet, but we're definitely headed in the right direction. He reduced my Metoprolol down to 12.5mg since my blood pressure is running very low on it and I am dizzy a lot. He advised that I see my neurologist since I am still having 2-3 ocular migraines a day, but did reassure me that this is common and usually begins to lessen around 1 month post-op. I still have a few more weeks before I can drive and still need to be riding in the back seat with my kiddos when in the car (fine with me... I like being chauffeured around!) He said that my incision is healing very well and that once it is all said and done, it will just be a thin, white line. He said several times that I am doing very well and if all continues to go well, I do not need to see him again for a year!!! I am feeling a little stronger each day and can walk a little further. I am still having a lot of sternal discomfort, but am finally able to sleep on my side (thank God!) so I am sleeping much better. This has all been such a whirlwind and I am so thankful to have this behind me! Dr Ryan said that he expects my aortic valve repair to last around 10 years, but I will be checked annually to monitor the valve and my aortic root as well as arch (to ensure no more aneurysms decide to form). To those of you about to go in for surgery: I definitely agree with the majority of people who say waiting and anxiety is the hardest part. OHS is not fun, but it is definitely do-able. Make sure you choose a highly ranked hospital and surgeon and the rest will fall into place. A great deal of what I anticipated was not as bad as I had thought it might be... pain meds, walking and breathing will be your life for the first few weeks, but that is ok! Just remember... this is all temporary and part of what will help you feel much better in the long run!!!

Two weeks ago today, I had my ascending aortic aneurysm and bicuspid aortic valve repaired. In some ways, it's flown by and in others it has gone very slowly. I would have to say, despite multiple daily migraines and a lung that collapsed a few days ago, by far the hardest part of recovery since I got home has been sleeping!!! This is something I was not prepared for, but is a daily struggle. I am so tired but just can't sleep.... mostly because I just can't sleep on my back! I spend all night moving between the recliner and my bed with a wedge pillow. I am just about to the point where I am ready to resort to sleeping pills and that is something I have never used in my life!! Some advice for those of you still preparing for surgery: - stock up on pillows! For me, the less expensive, flat pillows have been important in trying to get in a comfortable position. The more expensive, thick ones don't work well for wedging underneath you. When I am in bed, I currently have a wedge pillow + 6 additional pillows. When I am on the recliner, I have 4. - have a variety of blankets. I have been very hot ever since surgery, so most nights I don't want heavy blankets despite it being near freezing here in Dallas at night. - get a small fan. This was my BEST FRIEND in the hospital and I still can only sleep now with a fan blowing directly on me. I wake up in the night in sweats and hear this is very common post-op. - practice wedging pillows underneath you with your caretaker ahead of time. If they know how to wedge the pillows under your back, etc. ahead of time, they will appreciate it a lot more when you are waking them up all through the night to re-position :) - try to get accustomed to sleeping upright/ on your back in the weeks before surgery. This will help a ton after surgery when you have no other choice but to sleep in this position!

Late this afternoon I started having severe pain in my right back and front side, in my rib cage area. I tried to see if it would pass but when it didn't I called the on call cardiologist who urged me to head to the ER. Being 10 days post op from OHS I didn't argue. After a whole battery of tests I am fortunate to know it's nothing super serious, but that I do have a collapsed lung. The doctor said it is very common after surgery when you aren't standing up straight or breathing deeply. I guess I need to get to work a little bit more than I have been with my spirometer! Ironically, today was the first day I made it all day with no pain meds and now here I am back again on narcotics. Recovery really is a slow, gradual and day by day thing!

Did anyone experience frequent ocular migraines post op? I'm one week out and have had three so far, two just today! I've had these most of my life but usually only one every few months.

I was discharged this afternoon and am on my way home!!!!!! I am still struggling with low hemoglobin, however everyone is of the consensus that I will be fine without a transfusion. I also am packing around about 12 pounds of water weight which I got lasix for. I am still in a lot of pain but found a combination that works well for me. It was very emotional leaving the hospital as I tried to wrap my head around everything I have been through in the last 5 days. I am so ready to get home To my babies and begin the road to recovery!!!!

I have had my chest tubes pulled as well as my pacing wires and everything but my central line. I am still in a great deal of pain and every so nurses and Doctor I have seen said this is typical for my age: those that are younger, have more nerves and muscle tone = more pain. I am retaining a small amount of fluid so I am on lasix trying to get that under control. Thanks to all of the narcotics, Igave not yet had a BM but am on plenty of meds right now to make that happen, too. I am up and walking 4 laps around the floor and got to take my first shower today since Tuesday. That was amazing!!!!! The spirometer is very hard because of all of my pain, but I am giving it my best. Over all, I would say I am extraditionarily pleased with having a repair vs a valve replacement as well and finally having that aneurysm out of me!!!! The pain however was something I really underestimated. It's no joke!!!! To those of you about to go in: this is totally do-able, but it is definitely a slow process and you must have patience with yourself. I am looking forward to regaining all of my strength and energy and being able to (finally) keep up with my sons!!!! 😃😃

I had my ascending aortic anuerysm and bicuspid aortic valve both repaired Wednesday. I have loved every aspect of the heart hospital Baylor Plano. I am still trying to get my pain until control but getting the tubes out this morning definitely helped!!

My suitcase is packed, my house is almost cleaned, all of the laundry is done, all of the kids' things are in order for those who will be watching them and I (think) my mind is ready!! My husband and I will be spending the night tomorrow night near The Heart Hospital Baylor Plano so that we don't have to deal with Dallas rush hour traffic getting there Wednesday morning. I want to start the day of my surgery peacefully - not with road rage :) I took off the medical alert bracelet I've been wearing since my diagnosis and am more than happy to see my bare wrist again. That was such a good feeling taking that off! I had my cousin take some tasteful and modest pictures of my bare chest, so I can remember what it looked like before heart surgery. Just a personal thing I wanted to do. My husband and I plan to have a nice dinner together at Texas de Brazil tomorrow night, so hopefully I can stuff myself enough to not starve waiting for my 12:05 surgery time Wednesday :) Thank you all for the outpouring of love, support, encouragement, information and prayer you have shown me. I truly do not know what I would do without this site and everyone's guidance. You all have truly made this journey to surgery much easier for me. My heart sister, Emily Shively, who I met on this site, will be updating you all as she hears from my family on Wednesday. I was blessed to meet her earlier this year right after she had the same surgery I will be having, with the same surgeon at the same hospital. And we are the same age! My prayers go out to Jacqueline, Shelley, Billy and Kelly as you go in this week for your surgeries. May you all have textbook perfect surgeries and speedy recoveries. I look forward to "comparing notes" with y'all in the upcoming weeks!! <3

I had my Pre-Op today at the Heart Hospital Baylor Plano. All went smoothly and I have to say I am already very impressed with the facility and their staff. Next step... aneurysm and aortic valve surgery on Wednesday!! I am going to try and keep my mind busy this weekend spending time with friends and family, Christmas shopping (I realized I needed to get that taken care of before surgery and recovery) and getting my mind centered and ready for the surgery. I had a big scare with my tooth breaking on Wednesday and my awesome dentist was able to get me in at 9:00 Thursday morning and I had it repaired. I can't brag enough about Dr. Ryan's assistant, who emailed me back at 10:30 at night Wednesday calming me down after I sent her a frantic message panicking about my broken tooth/ missing filling. It is definitely very comforting to be going in this with an amazing surgeon/ staff!!

With only 6 days left to go, I sat down to try and relax with popcorn and a movie... and wouldn't you know, I bit down funny on a piece of popcorn and lost an entire filling - SWALLOWED it!!! Now I have a huge gaping hole and all I can think about is bacteria, bacteria, bacteria. I immediately stopped eating, rinsed three times with warm salt water, brushed my teeth and took the antibiotics that I normally take before a dental appt. I will be on the phone at 8am with the dentist opens tomorrow begging for them to be able to fix it in time for surgery next Wednesday. I just got done getting two crowns seated last week that I was needing, and now THIS!!!! Does anyone have any info or insight on dental issues prior to OHS... or if a temporary crown will be ok to have during an OHS? I cannot believe this just happened!!!! When it rains, it pours!!!!!

I am wondering if anyone could share what to expect the first day or two after surgery. I read a lot of people's posts that say "it was rough", but I am wondering exactly how rough with pain, nausea, etc. Thanks!!

Well, I'm on the board. In exactly two weeks I will be having OHS to repair my aneurysm and repair/ replace my bicuspid aortic valve. I am, for the most part, feeling emotionally numb. I haven't cried much and am just in "preparation" mode...getting things in order, Christmas shopping, baking/ freezing meals for my family. This is a very surreal feeling knowing I am about to be going through so much physically and mentally. My husband works offshore in the oilfield and works 21 days on the rig/ 21 days home. He is now home for the next 10 weeks, so I am very thankful to have him here to help with my recovery and the kids. I had a CT of my coronaries yesterday and took a tour of the Heart Hospital Baylor Plano. I also got two crowns that needed to be done before surgery. My pre-op is on the 6th. I still feel like I have a million things to do before surgery and feel like somehow I need to be more emotionally prepared before it gets here. I have been reading Adam's book and that with all of the support and advice, journals, posts from this site have helped immensely. Ready or not....here it comes VERY soon!

I am having surgery three weeks from today, November 9, to repair my aneurysm and hopefully leaking valve. I am curious... as a moderate social drinker, how long before surgery should I quit drinking the occasional glass of wine/ whiskey and coke? (I am by no means a daily drinker) Also, the same question goes for caffeine. I have no clue about either and haven't received any information on either topic yet. Thanks!!

November 9th is the date. A little over three weeks and I will be at the Heart Hospital Baylor in Plano, Texas having my aneurysm and valve repaired by Dr. William Ryan. We are hoping and praying for a valve repair instead of replacement, but should it need to be replaced, I will be going with a tissue valve. I have 5 year old and 8 year old sons and my husband works in the oilfield, so the amount of planning this is taking is incredible.

For those of you post-op, what do you wish you had known prior to surgery? Was it something you should have packed for the hospital, something you should have prepared for during your stay, something you wish you had known to expect once you returned home during your recovery? I am facing BAV surgery and ascending aortic aneurysm surgery pretty soon and am trying to make myself as informed and prepared as possible beforehand!!

I met with my second surgical consult in April and have seen him three times. In July he told me he was ready "to operate within a few weeks". A week later, he called and said that after consulting several others, I should be watched awhile longer. I had a follow up with my original surgeon of choice this week and now he said he would be willing to operate OR wait and re-check me every few months until I progress a little bit more. If it were just my valve I would put it off as long as possible, but since I have an aortic aneurysm, my first instinct is "GET IT OUT!!!!" I indicated I would rather proceed than wait and be exposed to CT radiation every 3 months. And now I await the return call from his office and what that might bring as to how this will progress. The emotional roller coaster is incredibly intense!!!

I met with my surgeon last week and he told me he is ready to schedule surgery. He said that he was going to consult with another prominent surgeon in the area he would like on my case since our goal is a valve-sparing David procedure. I am still waiting for the phone call to let me know whether the second surgeon is on board or would prefer more testing/ watching/ waiting. It has been an agonizing week to say the least, but I feel I am at peace with the decision to have surgery sooner rather than later. (Not sure how I will feel if the report back is otherwise). I have researched my condition so much and discussed it so much with other heart patients and close family members that I forget what a shock it is and how serious it really is. I was talking to a contractor at my house just today and he was talking about decisions and how sometimes they are so big. Without even thinking, I said "I know! Mechanical heart valve vs. tissue! Which one to get! Just like salt water vs. chlorine pool!" The look of complete shock washed over his face as he asked why I would compare a swimming pool to a heart valve. I laughed and said "Sorry, just two major decisions I am making right now in my life". He looked even more perplexed when he asked me why I was thinking about heart surgery. I explained the shortened version to him and realized as I discussed the BAV, the leaking valve, the aneurysm his face told the whole story. I didn't realize until today just how much my mind and body has had to adjust to this just being my new normal. I guess that is part of my mentally processing it and being able to cope with it. This aneurysm I have and am living with is scary as hell when you stop and think about it. It seems to me that being able to mentally process this and live with this is just another example of how miraculous the human mind is as well. I have seen so many wonderful stories on here of how OHS patients are walking 5+ miles mere weeks out of surgery and that is such a true testament to the amazing healing qualities the body has. In my opinion, the ability we all have to live with and come to terms with these very serious heart issues also shows how amazing our minds are as well. And....just incase anyone is wondering, I came to two very important conclusions this evening: Salt water pool and tissue heart valve (should the David not be a possibility) :)

I have seen several people post about this now and I am curious: why is swimming not allowed several months out from surgery? Is it the actual physical act of swimming? Or is it merely being in a pool?