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Hartsville, South Carolina,
Aortic Stenosis, Dilated Aorta
The Patient's Guide
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Happy Anniversary to me!Well, it's been what seems like forever since I journaled. Today is my one year anniversary of aortic valve replacement. I am doing great, off of all heart meds and my scar is the only sign that there has ever been anything wrong with my heart. I can't really say that much has changed because I wasn't having symptoms prior to surgery. Well, maybe one thing, I notice that I don't have nearly as many palpitations, in fact, I can't remember the last time I did. It took a while to get completely off the Toprol and my energy level has really increased since coming off. My BP and HR were low to begin with, so once I sat down in the evening I would pretty much nod off. I continue with cardiac rehab maintenance and really enjoy it. The cute little exercise specialist is still there (smile) and now has me doing interval training and weights. I took a cue from Linda H. and decided to give my moo moo valve a name....I named her Gilli (after Dr. Gillinov, world's greatest surgeon)!
My Walk Down Memory Lane...Hi Guys, I know...it's been forever, not from lack of trying, but major computer issues that just didn't let me use the site.
Still here!Hi guys, I'm still alive and kickin, just having some computer issues, so I'm not on the site much. Just wanted to say hi to everyone, have you all in my prayers, those that I've gotten to know already and those that I am yet "to meet". I've been reading the journals and I hope to be able to "talk" with you all soon.
I'M REALLY FIXED!!!! YAY!!!!Hi all, just got back from my first echo since surgery! I'm really fixed!!! My cardiologist said everything looks and sounds great! Whew!!!!!!!!!!!!!!!!!!! Waiting on that first echo after surgery is almost as hard as waiting on the surgery, lol.
Cardiac Rehab 101!So...today was my first REAL day (actually exercised) in cardiac rehab. I have been a little apprehensive, not totally sure what to expect. I have to say it was actually fun, did a lot of laughing (mostly at myself) and loved the staff (especially the really cute little sports medicine fellow, wink, wink). My first observation was...I think I am the baby of the class (always a good thing when you get my age). That observation seemed to give me a little extra motivation for some reason, lol.
Cardiac Rehab Take 3!Hi HVJ family! It's been a while since my last journal entry. As you may know, 6 weeks out from AVR and aorta repair I developed bronchial pneumonia. Much worse than the surgery! This lasted for over 4 weeks and cardiac rehab had to cancelled 2 times. Then Friday morning, June 1st, I woke up feeling better than 100%! It was really strange how from one day to the next I was completely better. I even spoke of it at church that Sunday, how miraculous it seemed to be. Then on Monday morning, I realized...God knew what was coming, so he healed me completely. My father passed away Monday morning. His inoperable aneurysm, which he had for at least 10 years, began to dissect and then ruptured. It had grown to 11 cm. from the 7 cm at diagnosis 10 years ago. Although he had also developed chronic lymphocytic leukemia and his kidneys were beginning to act up (he was going to require dialysis), thankfully he did not have to endure either chemotherapy or dialysis. I share this as a reminder to those of us who have or will have surgery and "bumps in the road" - just how fortunate we are. I am so grateful that my problems were discovered in time and that I had the opportunity to travel to Cleveland and be fixed by an awesome surgeon. To those recently diagnosed, considering when and where to have surgery, I just encourage you to seek the MOST experienced surgeon at one of the centers of excellence, where they are on the cutting edge of treatment. I so wish Daddy had gone to Cleveland Clinic years ago.
I'm Still Alive!Hi guys, I'm still alive...barely! I've not journaled in a while, have had a very rough 3 weeks. I just today feel significantly better. It started with a raw scratchy throat, stuffy nose...thought it was just a summer head cold, maybe the beginnings of a sinus infection which I've had problems with in the past. Well, it very quickly (within 2 days) turned into bronchial pneumonia and it has just about whipped my behind! 3 weeks and 4 different antibiotics later I think maybe I finally turned the corner. I was not even able to start my cardiac rehab and I'm not sure now when that will be. I am just soooooo thankful it didn't hit me a couple of weeks earlier. I have coughed (and sneezed) enough that it would have undone my sternum I'm sure. One cool thing...I had to have chest xrays and was able to see my sternum wires in the xray! They seemed to all be intact!
On The Road Again!!!Yes!!! Look out everyone, I'm driving again! No longer housebound! Didn't waste any time either, just got back from grocery store, drug store and my most favorite drive-thru...Sonic! Love their ice! I saw my cardiologist yesterday and he says everything sounds great. I will begin cardiac rehab May 8th. He cut my beta-blocker in half, thank goodness. My blood pressure has always been a little on the low side and with the Toprol even lower, so maybe now I will feel a little more energetic. He thinks we will stop it completely when I see him again in 3 months. I'm still having shoulder discomfort, it's better, but not completely gone. My sternum is still a little tender if I move in a certain way and the scar is also tender. It looks great, just the "pins and needles" feeling of healing. I bought some Mederma today, some say that helps, some say aloe is good. Any suggestions from you guys who have already walked this path??? All of these things are just "piddly" issues, I don't think I could be doing any better. I believe I may have well had symptoms prior to surgery, just didn't realize it. I believe I have a lot more "breath" now even though I didn't think I was short of breath before. I am supposed to go to Washington May 1st with my grandaughter's class, it will be a lot of walking, hope I will be ready. I am 63 years old and have never been to Washington, I'm really looking forward to it.
4 WEEKS!Hi guys, sorry I've not been "around", but I am still waiting on my computer. At the moment I am using a 10 year old laptop, almost as "moody" as I am, lol and definitely slower than I am and that is saying a lot, lol! It's hard to believe that I was in the OR or recovery this time 4 weeks ago! I don't really know how long I was in the OR, but my daughter says "not long"! I am so blessed...I am doing very well...counting down the days until I am allowed to drive again. I think that will be when I turn that final corner. My shoulder and neck discomfort has pretty much subsided, although I'm sure a visit to the chiropractor will make it all better! Can't wait for that! I hope you are all doing well, those recovering and those waiting. I am amazed how many "newbies" there are almost every day. Again, I will just say to those waiting on surgery...you are doing the hardest part now...waiting. Seriously, it's true. I didn't believe it either. Just be informed and prepared and you will be surprised how much energy you wasted in worrying. Oh...by the way, when I left for Cleveland on March 8th, everything here was brown...trees, grass, etc. When I came home on March 18th...everything was yellow (pollen)! So....I experienced the first post-op sneeze on day 6! Wow!!!!
Hi Guys!Hi there guys, sorry I've not posted much, especially to the "newbies", but my computer died and I am reduced to borrowing until I can get a new one.
1 WEEK OUT!Hi Guys, well, it's been one week since discharge from hospital and all is still good. Well...mostly good. Of course, I have the back, shoulder, neck aches which everyone says is from the way we are positioned on the table. My PCP actually told me he knew of one gentleman whose rotator cuff was torn during OHS. Yikes! I can almost believe it.
Dear, dear friends....Okay, I just had to post again. My heart which up until this point was doing just fine...is aching and "hurting" with love and affection and just plain awe at the friends I have made on this site. I told everyone I came in contact with at Cleveland Clinic about the site and Adam, his book, etc. But there are no words to adequately express how much your kindness and affection and support mean to me.
"Nothing Could Be Finer Than To Be In Carolina.....I'm home!!! As if my trip to Cleveland could be any better...we got bumped to 1st class on the trip home...oh my...what more could this girl ask for??
Leaving the big cityHey guys, last update from me (Tracie).. We finally got discharged!! YAY! We made it back to the hotel.. Things are going very smoothly... Went down and had dinner.. and even uploaded a new pic of mama for you guys on her My Photos page. We are leaving out of here in the morning headed back to beautiful South Carolina. I would like to personally thank God for allowing us to bring the South Carolina weather with us to Cleveland!!
Update...Wow guys sorry!! We had such a great day yesterday, that I didn't realize neither one of us posted! This is Tracie!! Finally got some rest yesterday!! And now we are waiting on DISCHARGE PAPERS on the 4th POST OP day!!! And we are planning on flying back to South Carolina tomorrow!!! One piece of information... it takes ALOT longer to get discharged than it does to be admitted!! Mama is doing absolutely fantastic!! Even caught her walking the halls with the very HOT CNP!! Just sayin!
Hi Guys...It's Me!Did someone say I had open heart surgery???? I am doing so well, I can' believe it. No pain at all now, never really had any, only little sore when I coughed. Thank God for Dr. Gillinov and Cleveland Clinic, but Tracie says I am the true rockstar! I really am doing great...got to meet Stephanie yesterday, she got bumped back a day. I am so glad I did it!!! And any of you out there wondering if the guys have been lying....they haven't been. Waiting was sooooo the hardest part. This has been a piece of cake so far! Thanks for keeping check on me!
48 Hours Post opShe has no oxygen. No foley. They are stopping her Pain pump as we speak and she will no longer have any attachments.. Since the chest tube was removed yesterday morning, she has not had to have any additional pain meds. The nurses are almost begging her to take pain meds but she is just not hurting. She has already walked the halls this morning once. Dr. Gillinov is not the rockstar here!! Just sayin..
Day 2 UpdateSorry guys.. we are still in the ICU.. But not because of anything bad..there is just not a room available yet to step down too. Mama is doing fabulous. She got all of her tubes out today even the chest tube. She only has 2 IVs and her catheter of course.. She is really not complaining of any pain at all. She sat up for a couple hours today and we are just waiting for our private room so she can finally get some sleep. The ICU is extremely noisy and its very hard to rest for even just a few minutes in there. Hopefully she will be in a private room tonight. We have been waiting since around 11 this morning for that room!! We got to meet Stephanie today. It was so nice to meet you Stephanie and it made mama's day! She was so excited that you were there. Thank you for the visit. I'm thinking tomorrow she might be able to do an update on her own and also respond to some of the messages she has received.
UpdateMama is still doing pretty good. She is having a good bit of pain right now. They are trying to get that leveled out. It looks like they will change some of her medications tonight. She got the tube out within 2 hours of arriving to the ICU. They have said the whole day she is doing exceptionally well. She is not in the best of moods because it is extremely loud in the ICU.. And of course you get absolutely no rest in the ICU because they are constantly doing something, touching you, pulling on something, or taking blood. She is also having a tough time with shoulder and neck pain. She did get some relief when they let me take over her neck pillow (airplane pillow) Thanks for all the prayers. Hopefully in the morning she will be able to get some tubes removed and get over to the step down unit and get more comfortable. Will update again in the morning as soon as I am able to.
Surgery update10:00 am got the page the surgeon was ready for me!! She is done already!! That has to be some kind of record. She is a rockstar afterall! He said the surgery went perfect! I will get to see her in about 2 hours. He said its possible they will already have her breathing tube out.
Surgery has startedJust got the page that the major part of the procedure has started. 08:45..
Surgery Day March 13Hey guys.. This is Tracie obviously.. They took Mama very quickly this morning around 6:15 EST. I should get a page when they are actually ready to begin the procedure. I'm guessing that should come any time now as it is almost 08:00 AM. I will update you guys as soon as I'm updated. She has left me with very strict orders to update all of her valve family. It means so much to me that you guys have been there for her during this time to support her. You know us family members aren't the greatest at understanding because of all the fears of our own we are having to come to terms with prior to the surgery itself. I was hanging in there pretty good till I logged in to this site. Thanks again for all the encouragement, support and friendship. I can tell you from all she has talked about it means a great deal to her.
Here We Go!!!!Well guys, it seems like my day has finally arrived! I won't lie, it has been up and down with the emotions the last several days especially. But...I'm good now. After meeting my angel Steve yesterday, I met another one today and his name is Dr. Marc Gillinov! He is awesome! He is very confident, but humble at the same time. He said that everything with me should be very routine and simple. Seems other than this crusty old aortic valve, the rest of my heart is in great shape. He even said that I don't really have an aneurysm. My aorta is only very slightly dilated, and he will probably just "pare it down a little" to fit the valve, but it does not need to be replaced.
An Angel named SteveI met an angel today, his name is Steve. He is from Colorado and just had his 2nd AVR here at CCF, the first was done less than a year ago in Denver. He choose CCF for the redo.
I'm Back!Hi guys, sorry to just drop "out of sight" yesterday, but it was a long day and I was exhausted last night. Started out yesterday morning with temps in the 20s and wind in the 30s!Almost couldn't make it across the street, Tracie actually had to pull me against the wind at one point, lol. Then while we were inside the hospital, it started snowing! It was gone by the time we came out, so that made it nice...pretty to look at...no mess.
The Eagle has landed in Cleveland!Hi guys, we arrived in Cleveland! Flight was good except for a pretty rough landing. It's raining and dreary here. We were picked up at the airport by a stretch limo at least half a mile long, courtesy of the Cleveland Clinic. Should have seen the looks we got...2 country girls getting in that baby like we were somebody!!!! We have settled in the hotel room, had a bite to eat and ready to relax a little. Thank you all for your prayers, we have completed the first step of the journey! Have a full day of pre-op testing tomorrow, then the weekend to just chill. I see that Jeff is amazing...I'm not surprised. So...it looks like this is really going to happen! Will keep you all posted!
"Leaving On a Jet Plane!!!!Wow...it's time. Tracie and I will leave for Charlotte NC at about 9:00 in the morning to fly to Cleveland. Our flight leaves at about 1:15 and arrives about 3:00.
Condolences for Kelly's momI have Kelly's mother's address now for those who wish to send condolences.
Seriously????Hey guys, I'm good. Been running around, tying up some loose ends before my trip, which suddenly is way too close, lol. Kelly's passing did throw me a curve, I won't lie, but I am trying to turn that over to God, way too heavy a burden for me to carry. God bless her mother and family and friends and I believe she is resting in peace with a perfect body and heart.
Sad newsSorry to inform you all, Kelly Nugent passed away today.
The countdown begins!Wow...where did February go? I feel like I am in a movie watching someone who looks like me walking around in an almost zombie like trance. My feelings are dull, my mind is all foggy and I can't seem to concentrate on anything. Well, I mean anything but you know what!!! I have not had the "big cry" that Chris and Jeff spoke of, but I am just a blink away I think. Lots of emotions bottled up.
Okay now!Okay guys, this "been to hell and back" is NOT sounding like, the waiting is the hard part, it really wasn't so bad, yadayadayada!!!!
Counting down the days!Hi guys, I am beginning to think this is not a dream after all. I can't wake up!! Only 17 days before I leave for Cleveland! Wow...where did it go? I was just complaining about having to wait so long!
News about KellyHi guys, just wanted to let everyone on HVJ site know, I just read on Kelly Nugent's facebook page that they have removed her breathing tube and want her up walking soon! Yes!!! So it appears she has turned the corner and is making her way to recovery! What a trooper she is! Hopefully we will be hearing from her soon!
Bad news and good news!Well...bad news is...hairline fracture in top of right foot. Good news...hairline fracture in top of right foot.
Whoa!!! Slow down!!Okay, I know I'm the one whining about having to wait so long, but what happened??? Suddenly time is flying by and I'm not sure I want to do this anymore. I think I want to take my toys and go home!
Got My Tickets!Hi everyone, just a quick update. I have made hotel reservations in Cleveland for my daughter and today I booked our flight. Went with a non-stop flight, it's a lot more expensive, but I just want to get there as quickly as possible...it's only money...right??? I don't like flying, but I figure I'm going to let someone stop my heart from beating, cut it open and then start it back beating and I'm gonna be afraid of flying???
I'm Back!Hi Guys, I'm back after a few days away. I am fine! I know I was a little emotional the last time I posted...but it was such a profound experience that I just wanted you all to know that you are like family to me and each one of you is part of my "healing circle".
Note to my HVJ familyWrote this in response to Janis' post earlier, but want each of my HVJ friends to know it applies to you all.
Hi Guys...Still Here...Still waitingHello HVJ friends, just a quick note to let you all know I am still here, still waiting.....doing okay. Think I may be having a few "symptoms"???? Seem to be getting a little more fatigued, maybe a little chest tightness. Probably anxiety and FEAR...lol. Otherwise, doing okay, trying to stay warm, although it has been unseasonably warm down here, guess it's true about the "internal thermostat" going haywire before surgery as well as after. Can't seem to get warm enough.
Hi Guys!Hi there guys, I'm still here, still waiting......
Any News?Hey guys, has anyone heard from Eugene Linn?
Meltdown!So...yesterday I had a real meltdown, my first and hopefully, my last.
Checking off my "to do" list.Today I went to the dentist for my clearance for surgery. The timing was good as it was time for my routine 6 months cleaning and check. All was good, so that's another thing taken care of.
Still counting down!Well, I've spent a good deal of time going over all of the information in the packet from CC. Wow, those people are organized! If there is anything I need to know that isn't in that packet...I don't know what it could be. Well....it didn't tell me what kind of valve to get or whether or not to repair the aorta or even if I was going to have the mini or full sternotomy! Drats!!
I'm back!Hey guys, didn't expect to be back so soon...but just had new development. I just received my "packet" from Cleveland Clinic with my appointment schedules, etc. My surgery is scheduled for Tuesday March 13th and I have to start the "pre-surgical" process on Friday March 9th and then meet with Dr. Gillinov on Monday March 12th. So I will have the weekend in Cleveland to get good and stressed out! I feel sick right now. Was doing pretty well before this and now it's another "my god...it's really happening". I also ran across an older journal post from one that did not make it through the surgery and so that really brought me back to reality pretty fast. Anyway, just wanted to let you guys know one step closer to climbing my mountain.
I'm officially registered!Hi everyone, just checking in to update. I got the call this morning from Cleveland Clinic registration. They are really on top of things...not scheduled for surgery until March 13th. Erv, the gentleman who registered me was very nice, offered lots of information and assured me that all the "pre-admission paperwork" was done, all I have to do now is show up with insurance card and photo ID when I am instructed by Dr. Gillinov's staff. Even though I had already checked to make sure I was covered with my insurance, he confirmed that and told me "don't you worry at all about that". So...it's back to the waiting and thinking about tissue vs. mechanical, repair the dilated aorta while they are in there or waiting until it gets larger. So many things to think about, pros and cons for all of it. I know Dr. Gillinov leans toward tissue valves, believing that by the time it may need to be replaced they will have the catheter procedure perfected. So...decisions, decisions. All for now, everyone take care.
Happy New Year!Just wanted to say Happy New Year to all of my new friends on HVJ. You have all been such a blessing to me waiting on my surgery. I have been amazed at the outpouring of support and willingness to share your experiences with me. It is totally empowering and has brought me to a peaceful place (well....I waver a little bit from time to time, sure you understand). Everyone be careful if you are on the roads tonight and hope everyone's favorite team wins their bowl game (well ...except West Virginia.....Go Tigers!) LOL, I'm a huge Clemson fan, so can't pull for W. Va this time :-)
I HAVE A DATE!!Oh my goodness, oh my goodness, oh my goodness! Just got the call from Dr. Gillinov's nurse at Cleveland Clinic with my surgery date. March 13th is the day! Don't know if I want to laugh or cry. Really feel like I'm gonna throw up to be honest. Was so impatient waiting, now the waiting really begins. Kathy (the nurse) was extremely nice and personable and gave me lots of information. Dr. Gillinov will replace my aortic valve, he favors tissue over mechanical, believes by the time it would need replacing they will be doing them by catheter, will see about the aortic root when they do another echo when I get there. He believes he will be able to do the 3 to 4 inch mini. So.....I guess it's all good. Oh my goodness! Is this really real??
Still waiting...Hey ya'll, I'm still waiting! I finally got "official" notification that my records arrived in Cleveland and are in the hands of Dr. Gillinov's staff. He will review them and then I will be notified of his recommendation. Guess it's too much to hope that he will say "you're fine....you don't need surgery"? Does anyone know how long this review process usually takes? I mean, after the failed heart cath on November 22nd I thought I must be on death's door, but apparently not. I am trying to be patient, but the anxiety keeps creeping in. The holidays aren't helping either...I'm really missing my Eddie...wish he were here to help me...he was so strong. Oh well...I digress. Merry Christmas to all, those recovered, those recovering and especially those still waiting!
Day 3 - Waiting is hard!Well, this is what I consider as day three of my journey to heart valve surgery. I have a feeling this is going to be one of the hardest parts...waiting. In some ways I wish the surgery could be tomorrow. I am amazed by the feedback I have already gotten from this site. Some of the information I have gotten from fellow "valvers" will prove to be invaluable I'm sure. Reading the journals has helped in many ways, not the least of which is realizing others have gone through this and made it just fine. Thank you to all who have sent tips and encouragement...don't stop...it really helps (but then you probably already know that, right?).
Day 1, December 14,2011Hi fellow "valvers". I am new to the journal, am just really getting started on the journey. Although I was diagnosed several years ago, I apparently am now where replacement is necessary. So...here I go. Will have aortic valve replacement and ascending aorta repair in the next few weeks, not sure of the date yet. Hope to go to Cleveland Clinic to Dr. Marc Gillinov, whom I have seen on Adam's blog. I'm nervous, guess that is normal. Any advice would be most appreciated. So...here I go!
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