It's been a while since I last posted. Truth be told, after the failed mitral valve repair and a second surgery to re-repair it, I went with the "out of sight out of mind" approach while I waited for my three month follow up echo.
During that time, we left Brookfield and moved back to Wausau, WI. That meant finding a new cardiologist. I ended up going with the guy that was my dad's cardiologist. My parents seemed to like him and he knows my family history. It took a little while to get in to see him and to set up the echo so my 3 month echo was actually a 4 month echo. Fortunately this time around the news was positive. They say the re-repair is functioning "fantastically". My EF is the same as it was back in June (around 45%) so they increased my Coreg dose a bit. Hope to get that number back up to 55 or so. My energy level is still down a bit but I think that's because I didn't do cardiac rehab this time around. As it stands right now, my next appointment is in a year.
It's kind of amazing how fast time goes by. It has been 18 days since surgery and life is getting back to normal, except for the cabin fever. It has been so hot the last week or two. Highs in the upper 90's to low 100's with high humidity. It's been HOT!! So we have been doing walks/laps around the mall. It hasn't been so bad except for the inconvenience of having to have Sam drive everywhere.
Pain has been good, only been using a couple of Tylenol for bed for the last 7 days. Sleeping has gotten a lot better as well.
Thanks for all the well wishes!
Boy does it feel good to be home. The travel wiped me out quite a bit but it is REALLY nice to be home. We got to the house about 6:30 pm. Sam ran to the store to get a few essentials and it's now about 9 pm.
Can't wait to see the boys tomorrow. Karla is coming to stay with me for the day while Sam runs to get them. Thanks again to the family for taking care of them while we were away. We appreciate it more than you'll ever know.
I had my final labs and a visit with the NP this morning. She thought everything was looking good and it would be no problem to head home tomorrow. We can't wait to see the boys. My sister will come down to stay with me on Thursday while Sam drives up to get them.
We took the hotel shuttle down to the Little Italy area for dinner tonight. It was nice to be out and about again.
We get to sleep in tomorrow morning before heading to the airport in the early afternoon. I won't know what to do without someone knocking on the door to draw labs, get my weight or check vitals. Maybe I'll ask the front desk if they can send housekeeping up to clean the room by 5 am........or not.
Hi everyone. I'm having a bit of an issue with "percocet fog" this evening so I'll be keeping this post on the short side.
First and foremost, my love and sincerest thanks to Samantha for all of her support and care, especially over the last week. I can't imagine going through this without you and am so thankful that I didn't have to. I love you honey, you're the best.
Tomorrow we have follow up blood work and a meeting with one of the nurse practitioners. If everything goes well, we will be free to head home. Our flight is currently scheduled for Wednesday.
That's all for now. Thank you to everyone for your kind words and thoughts. I hope to be able to respond to all of the posts in the next day or two.
On Sunday at 2pm we were on were way back to the hotel, which for me I was highly impressed that we got discharged in a timely fashion.
Chris is doing good a little tired and has minimally pain that has been controlled with a couple of percocets every 4-6 hours.
I am so very proud of him he has been such a trooper with doing all his breathing exercise every hour and taking several walks. I only occasionally have to remind him to stop crossing his legs when he is in bed.
We did post pre & post pictures of scars.
I do believe tomorrow Chris will taking over with his journaling tomorrow.
Chris is doing good we just got back from a walk up to the pavilion. He is doing very well. Last night they had started him on low dose of metoprolol but his heart wasn't having any of it, he developed 2nd degree heart type 1, about 15 minutes after he took it. Luckily the half life was short 3hours and he went back into normal sinus rhythm with a first degree heart block. Cardiologist that saw him today said that it should return to normal sinus rhythm after the fluid around his heart subsides. So we will see. We have been for 3 walks today and chris has said he's bored and needs something to do.....hmm I can see the next several weeks might me long if I can't find something for him and the kids to do.
Chris is doing great! He has been up for several walks today, free of tubes, only problem so far a very nosiy hall outside of our room equals no sleep. So this afternnoon Chris blood pressure was a little low due to diuretics... all better now that they stopped the diuretics blood pressure came back up. Chris is currently playing angry birds while trying to keep his eyes open. He is very tired but unable to get sleep without being interrupted every 10 minutes.
We will post pictures soon
We have made to step down unit, yah!! Chris is doing great ate a little lunch and now s resting so we can take a walk later, even though his nurse he doesn't need to walk until tomorrow. I'm pretty sure we are going to get at the very least a small walk in.
I am so very proud of Chris he is doing an amazing job. Ethan and Aaron, we miss you and love you so very much.
Chris is doing great, sitting up in chair some jello and blenching, can't ask fo more. There are looking to give him some diuretics and hopefully before 5pm get to the step down unit. Should be a busy day. Chris says hi to everyone and thank you for the kind thoughts and prayers.
The breathing tube came out at 630pm tonight and Chris is doing good. He is talking some, he is having some pain in his back and chest they set him up with a fentanyl pca pump and some good old toradol.
He seems to comfortable at least considering three chest tubes. I asked him if wanted me to stay with him or go back to the hotel and he asked me to stay. So I will stay and be a watchful wife.
Best of all so far we have had good nurses unlike the last time.
I'm in with Chris he is resting comfortable still sedated with endotracheal tube in. Plan is to ween him him around 5ih tonight. Chris has 3 chest tubes only 1 is draining less than 60cc out. I can't believe we have reached this milestone. I can't wait for him to wake up and start talking......
Chris is out of surgery just talked with Dr.G. Everything went good according to the good Dr. they re-repaired his valve (the cords that were popped) along with enhancing the valve they made a new tissue leaflet with his own pericardium along with a new angioplasty ring. All in all Dr.Gillinov said that he thinks this one should last forever and within the next year his heart function (EF) should be back to normal.
Chris is currently in CVICU, he has a breathing tube, and couple of Chest tubes (2, possible 3) and heart wires.
I have not gotten to see Chris I am trying to patiently wait until 1430 so I can go see him. Well, we all know how much patience I have so that might be a hurdle for me to wait that long.
Thank you Dear Lord for answering my prayers and continue to please bless his recovery with no complications.
Thank You everyone for your thoughts and prayers!
Well the day has come it's June 20, 2012 @ 522am and Chris has just been called back to start the process. Chris was a bundle of nerves this morning, but who could blame him. We did not sleep....again to be expected. I will continue to post through out the day to keep everyone updated and of course give me something to do.
Please watch over my loving, caring and wonderful husband today as he travels the road of OHS again. Please guide the surgeons hands to perfection and that he may recover without complications. Dear Lord, give my husband strength and courage; Bless him dear lord. In Jesus Christ I pray, AMEN.
p.s Shout out to out good buddy Nick and best of luck on his journey today.
We met with anesthesiology and the surgeon today. Both meetings went very well. We discussed re-repair vs. replacement for some time with Dr. Gillinov. He said if the failure was due to a technical issue (like a ruptured gore-tex chord) he can re-repair it by replacing the ruptured chord and putting in an extra one for reinforcement. If the failure is in an existing chord or due to other issues with existing tissue, then he will replace the valve with a tissue valve. Sam and I both agreed to this course of action. The repair, if possible, would give me the best chance of not having another surgery for some time. If a repair seems at all questionable, as to whether it can be successful or not in the long run, we will go with the new valve.
The surgery is scheduled for tomorrow. We report around 5:15 am. Tonight Sam and I are taking in the Indians/Reds game.
Thanks to all for the kind thoughts and prayers.
p.s I posted a picture of Dr. Gillinov and I on my Photo page.
Testing started about 11:00 am this morning with a CT scan and finished up about 3pm with a visit to a staff cardiologist. Everything went smoothly and we only had to sit and wait at one appointment.
The biggest finds of the day were during my echo. First, they calculated my ejection fraction at 50%. That's quite a bit higher than the 35%- 40% my local cardiologists office calculated after my last echo. Second, it appears that one or more of the chords they replaced in the surgery last September have ruptured causing a posterior leaflet flail. Not sure why neither my doctor nor the CCF docs were able to see that on the 3 month post surgery echo when they saw the 4+ leak had returned. We meet with Dr. Gillinov tomorrow to discuss the findings and talk about Wednesday's surgery.
Sam and I arrived at our hotel in Cleveland about 3 pm today. We checked the area out for a while, then had a nice dinner at the Chophouse. Now we're just trying to relax and get ready for my pre-op testing day tomorrow. At least this time around I only have 5 appointments instead of 9 like last time.
Best wishes go out to Trent and Donna, who have their big days tomorrow. I would also like to wish all of the dads out there a happy Father's Day. Ethan and Aaron, I'm sorry I wasn't able to be with you to celebrate the day in person. I love you boys.
Hard to believe surgery is only a week away. Seems like only yesterday I was thinking a surgical date 3 months out would never get here.
We took the kids to the Wilderness Resort waterpark in the Wisconsin Dells a few days ago. We hadn't been there in a couple of years and wanted to do something special for them before I'm laid up for a while. The weather was great and a good time was had by all. I've got to give Ethan his props. He went on the new plunge vertical drop slide even though he got a little scared when he got to the top. The look on his face was priceless as the bottom dropped out from under his feet and he began to drop. When it was over he said it was fun, but wasn't real eager to do it again.
We had the pleasure of meeting fellow HVJ blogger Deb Ziegler a couple of weeks ago. We live about 15 miles or so apart. We traded stories and compared notes for a while. Deb was also kind enough to give me her wedge pillow for after surgery. I had a pretty rough time getting comfortable at night after the last surgery, maybe this will help some. Thanks again Deb.
Monday was my last day of work before surgery. Sam had the day off today so we ran some errands and attended Ethan's first ball game of the year. Aaron plays tomorrow.
We drop the boys off at Aunt Stephanie and Uncle Mikes house in Abbottsford on Friday. A big thank you to them for taking care of the boys while we're gone. I know they'll have a blast playing with the kids. I'll apologize now for the fact that they wake up around 5:30 every morning.
Sam and I will return home on Saturday and then fly to Cleveland Sunday morning. Monday the 18th I have all my pre-op tests (CT scan, echo, x-rays, blood work etc). We talk to Dr. Gillinov on Tuesday and surgery is on Wednesday. If all goes well, we return to Milwaukee on the 27th after my follow up visit with Dr. G.
It's about 11:30 pm so I'd better get to bed. The alarm clocks will be waking up in about 6 hours.
I (Samantha) figured I would update just a little as I know Chris is been busy with work and I know several people have been wondering what we are up too.
So the count down begins for the second OHS on the mitral valve on June 20 at the CCF, so that leads us 28 days. WOW- it feels like forever. It has been 10 months since we last visited CCF for the first heart surgery done robotically. And let me tell you, I didn't miss it and personal think it's too soon to go back, but as Chris has said early "we deal with the hand were dealt."
The next 28 days I know will go by fast as we will take the kids to the Waterpark in Wisconsin Dells for a little fun before we leave. Then we will get them ready to go to my sisters house (with my Mom) who has so grasiously volunteered to watch over the boys for 10 or more days while we are at CCF. The boys are excited to be at Aunt Stephs & Uncle Mikes as they will get to ride the 4 Wheeler and swim in the pool. The boys understand Dad is going for another heart surgery but as they are only 4 & 7 years old they don't fully grasp the complexity of the situation and that's ok.
I am so very proud of my husband and how well he has handled and dealt with this news on needing a second OHS. As we make this journey again in 28 days, we would like to thank everyone in advance for the thoughts and prayers.
"The journey of a thousand miles begins with a single step. - Lao Tzu"
For those of you who don't already know, my re-operation is scheduled for June 20th. I will be returning to Cleveland and Dr. Gillinov for the procedure. He is still hopeful for a repair. This time the procedure will be performed through a full sternotomy. Samantha and I fly into Cleveland on Sunday, June 17th. My pre-op tests are on the 18th and we talk with Dr. Gillinov on the 19th. I've heard people that have been through both the robotic repair and the full sternotomy say that the sternotomy was less painful. I hope that's the case, although the robotic procedure wasn't as painful as I feared it would be.
I'm looking at getting a wedge pillow for sleeping after we return home. Does anyone have experience with them and if so what height seemed to be the best?
Well, I heard from Dr. Gillinov this week. His assessment was basically the same as my cardiologist's. Since leaving CCF last September, I have developed a "significant" leak in my mitral valve. They can't tell from the ECHO or TEE what caused the leak, but Dr. Gillinov recommends a reoperation to fix it. This operation would be via a sternotomy. He thinks the probability of a re-repair is high, about 70%. I wonder though if a replacement would be the way to go. I don' know how I would handle another failed repair.
I haven't set a date for the surgery yet. Dr. Gillinov said it should wait until at least 6 months have passed since the initial operation. It's been about 5 months now. I'm thinking maybe sometime in May or June. I also haven't decided if I'm going back to Cleveland. It seems like the most likely scenario, but I'll probably get another consult or two before I make a final decision.
Greetings all. The results of my TEE confirmed a leak due to a prolapsing posterior leaflet. It appears to be moderate at this point. The test also showed my ejection fraction to be low, 35% - 40%. Ideally that number would be 55% - 70%. It was 65% before I had surgery. I'm told that a low EF is somewhat common for patients with an annuloplasty ring and a post surgery leak. I've been prescribed Coreg to help with this.
I will be sending my echo and TEE results back to Dr. Gillinov to see what he has to say about all of this. I think that I'll also seek an opinion from Dr. Sam Balkhy at the Wisconsin Heart Hospital here in Milwaukee. I would have liked to have had this done by now but I've been waiting for my cardiologists office to get me copies of my echo. It's been over three weeks and still no disc. Very frustrating. I have an appointment with him on Monday so maybe I can get something done about it while I'm there.
Well, it's been a day since I was told that my newly repaired valve is leaking again and I think I'm ready to come in off of the ledge now. What a punch to the gut that was. I would like to thank my friends, family and HVJ family for the encouraging words, it means a lot to me. Hopefully the TEE on Monday will provide some better news or at least give us a more clear picture of what's going on. Then, we'll take it day by day and do what we have to do to make it right. Not an ideal situation by any means but you have to play the hand your given.
I had my 3 month post-op echo performed today and the news wasn't what I was hoping for. I was told that my mitral valve is leaking again. Moderate to severe regurgitation. I'm devastated. It's really hard to get my head around it. My cardiologist said that part of the repair must have failed and we have scheduled a TEE for next Monday to try and shed some more light on it. So many questions. How does this happen? Where do we go from here? What options do I have? Why me? Hell, why anyone? Things seemed to have gone so well with the surgery and recovery and now this. It's hard to understand. I did my due diligence, the research, references etc., and 3 months later I might be back to square one. If re-operation is needed, do I go back to Cleveland? I just don't know.
Thank you Samantha for the continued support and shoulder to lean on. I'm so sorry we might have to head down this road again.
Just a quick note to update my status. Thursday marks 4 weeks since my surgery and things seem to be going very well. The only discomfort I really have at this point is very sensitive skin around the incision. Unfortunately this my take 6 - 12 months to subside.
I had my first follow up appt with my local cardiologist today and he said things are looking great. All of my post op blood work, chest x-rays and EKG's have been normal. We scheduled an echocardiogram for the end of December, talked about cardiac rehab (should start in a week or so) and made my next appointment with him for 9 months from now. I feel very fortunate to have come through all of this as well as I have. Thanks again to the doctors and nurses at the Cleveland Clinic, they were as good (or better) than advertised.
All for now. Will update again after rehab starts.
We've been home since Tuesday afternoon and things are going ok. I have no pain (just a little soreness) so that's good. I saw my primary care physician yesterday and my ECG and chest x-ray were normal. My blood work won't be in until next week. My biggest issues so far are skin sensitivity, sleeping and energy level.
I have a couple of areas where nerves were damaged or cut by the surgery and the skin in those areas is extremely sensitive to touch. It will take some time for the nerves to regenerate so for now Lidocain patches help somewhat.
As if finding a comfortable sleeping position wasn't hard enough, I've had night sweats the last few nights. I woke up last night at 3 am cold and drenched in sweat. How long will this last?
I hope that as I start doing more, my energy level will return. I feel pretty tired during the day right now. I look forward to starting a cardiac rehab program. I think that will help me physically and mentally as well.
Jay, good to hear you are on your way home. Best of luck on your continued recovery.
What a whirlwind the last 10 days or so have been. Seems like it was only yesterday that I was nervous about pre-op testing and here we are home today with a repaired valve and some new perspectives on life. I must first take time to again thank and praise my beautiful wife Samantha. She was a rock. Not only did she encourage me throughout the process, but as a nurse she kept the staff on their toes and me on my feet pushing the recovery. Thank you honey, you're simply the BEST! I would also like to thank all of our family, friends, fellow patients at Cleveland Clinic and heart valve surgery bloggers. The support, direct or via the journal, was incredible and made it all seem a little easier. Last but not least thanks to Dr. Gillinov and his staff. I'm confident that I couldn't have made a better choice for my care.
Special thoughts going out tonight for fellow Cleveland patients Jay Short and Jim Davis. May your recoveries continue to improve so you too can return to life and family asap.
Sam and I are at the airport waiting to fly home today. We got discharged yesterday afternoon and spent a quiet night at the hotel. We were originally scheduled to fly home on Thursday, but today is our oldest son's 7th birthday so we are going to surprise him by showing up at home this afternoon. We can't wait. We miss both boys tremendously.
I want to say thanks again for all the comments and visits to my site. The support has been great. I will try to continue posting updates as we move through the first few post op weeks.
Jay, I hope you're feeling better and they get you up to speed and discharged soon. Safe travels home, be well.
Good Sunday Evening,
Sorry I didn't post earlier today but apparently the Heart Valve Surgery site had some issues with hackers this morning and the site was down.
We've had another good day today. Sam's experience as a cardiac nurse has proven invaluable as she has kept me walking, active and using my spirometer the last couple of days. Because of that, I'm feeling good and am being discharged tomorrow. In the end, I've got a couple of new Gore-tex chords supporting my valve and the post op echo today showed only trace amounts of a leak which is normal in most people. My energy level is pretty good, it will be interesting to see how long it takes to build up some stamina again.
We've met some really nice people here and I want to wish them speedy recoveries. Jay and Arthur, may god bless you and heal you. And may he also bless those angels that have been at your sides.
Time to hit the sack, they'll be waking me up for vital sign readings soon enough.
It's Sat. morning and I'm sitting up watching ESPN and reading the paper. Breakfast left a little to be desired but it was nice to have some real food again. Pain has been manageable thus far with a little help from the percocet and I was able to get some sleep last night between nurses visits. All the doctors seem to think I'm doing well. A big thanks to Sam for all of her help and caring. This would be so difficult to attempt alone. More to come later. Going to rest a bit. Thank you all!!
Chris is doing great! He sure is a trooper. His breathing is normal and everything looks good. They just pulled his chest tube so that is relief and should help with the pain management as well, next they will pull the IJ and send us to regular nursing floor in a couple hours. Chris is still having a lot of pain so are working on trying to get a handle on it. Chest X-ray came back normal with irriatation around the heart called pericarditis - this is common in young people and nothing to worry about. Chris gives everyone best wishes and thank you all the support.
Everything went great. It took from 9:06am and was done at 10:15am. I was amazed when I got the call saying he was done. Although it took 3 hours to prep him from 515 am until 9:06 but the hard part is over. I will admit even though I am a cardiac nurse the Endo Trach tube scares me and I really hope it's out before I get up there. I will get to go up and see him around 12:30pm or 11:30 (central) time. Chris will be in ICU for 24 hours standard protocol and the down to a step down unit.
We are here, Chris has just gotten called back for prep. It should be a couple of hours yet before surgery. We have meet a lot of great people so far on journey- best of luck to all those people as well as their journey is also today. Chris is a bundle of nerves and I don't blame him, as well as myself. We wanted to thank everyone for the well wishes and support it means a lot to us. " To our boys Ethan & Aaron, we love you very much and Dad sends kisses and hugs"
The day is almost here. We report to the hospital at 5:15 tomorrow morning to prep for surgery. I can still hardly believe it's happening, yet I feel ready. Sam and I met with Dr. Gillinov today and came away feeling more relaxed and confident. He said all of my test results were good and we're still on for valve repair done via a minimally invasive approach, most likely robotic. That sounds good to me.
Thank you to everyone for your kind thoughts and comments. I'm sorry I didn't get around to answering all of the posts in the guestbook yesterday. I was pretty wiped out after the cath and rested most of the day.
My beautiful bride will now be taking over the posting duties for a while. Talk to you soon.
Chris is done with his heart cath and everything went great as expected. Doc says " Beer, brats and cheese did nothing and he can continue to eat and live life as he always has" Chris is doing great, he is currently on bedrest for 2 hours and we should be back at the hotel before 12:30.
We actually finished all of my appointments ahead of schedule today. It seemed to be an extremely efficient operation especially when you consider how busy it is. I think it helped to have early a.m. appts. Tomorrow is my heart catheterization. Have to admit, I'm a bit anxious about the procedure. I've seen others post that it wasn't as bad as they expected. Hope that's the case.
Thanks again to Samantha for being at my side. I couldn't do it without you.
8 appointments down and one to go. Not too bad today, even for someone who doesn't like needles. They've keep us moving right along until now. May have to wait an hour or two for my echocardiogram. I'll try to catch up on my guestbook when we get back to the hotel.
Sam and I arrived safely in Cleveland earlier this afternoon. Our hotel is downtown, right across the street from Progressive field (where the Indians play)and about 3 miles from Cleveland Clinic. We went out for a nice dinner tonight and are now just relaxing, getting ready for the week ahead. I have to report to the hospital by 7:30 tomorrow morning to start my pre-op testing. 9 appointments tomorrow alone. Yikes.
Thanks again for all of the support and kind thoughts coming our way. It's very much appreciated.
Today is my last day at home for a while as Sam and I leave for Cleveland tomorrow morning. Hard to believe I'm having heart surgery in a few days. I think a lot of that has to do with the fact that I'm still asymptomatic and feel great. However there are changes taking place in my heart that should be addressed before symptoms start so it's time.
Since it's our last day with the boys for a while they're calling the shots today. Sounds like a trip to the zoo or the museum to start us off today. Fortunately the weather is cooperating.
Thanks again for all of the messages and support and we'll talk to you next from Cleveland.
This is the area where we will keep everyone up-to-date on my progress. Once Sam and I get to Cleveland (Sunday 9/18) we will try to at least give daily reports. If you subscribe and add your e-mail address, you will receive notices of journal entries via your e-mail. Also, if you click on the "My Story" tab you can get some background info on my condition and upcoming procedure.