My new "do"....feel younger now....needed to look younger!!!
Happy Anniversary to me!
Journal posted on March 13, 2013
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)!
Wow, in some ways it seems like just yesterday that Jim and I were "co-patients" and in other ways it seems like a lifetime ago. I just feel so blessed!
To all my HVJ family, thank you so much for all the support and love you gave to me and my daughter Tracie (bless her heart, I think it was worse on her than me). Those who kept her company through the journal and email while I was in surgery will have a special place in heaven one day.
To those facing surgery still to come...I know you are "tired" of hearing it....BUT it really is true. Waiting is by far the hardest part. Look to fellow "valvers" for support, find a great surgeon that does many, many valve surgeries and consider yourselves to be blessed...you can be fixed!
Thanks to Adam for his book, this site and his personal help in getting me "in" with Dr. Gillinov. It is because of your book that I did all of the research that led me to Cleveland Clinic and Dr. Gillinov.
So, friends, hope all are doing well and keep the faith...we did this!!!!!!
Linda THE Tiger and Gilli (aka Linda Dixon, AVR 3/13/12.
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.
Today is my 6 month anniversary (congrats to you too Jim Smith, my surgery day twin). I am happy to report that I am doing very, very well. I only have a couple of weeks left of cardiac rehab, but I plan to continue with their maintenance program, which, by the way, is much less expensive.
I have had some issues with my heart rate going up with any sort of activity, therefore, it seems that a low dose of metroprolol is going to be my new BFF. I now wonder if this has not always been a problem that I just wasn't aware of. My heart rate is completely normal when I sit down, but as soon as I stand it would go up over 100, one time as high as 130. The weird thing was...during exercise I did fine, not going over my target rate. That was until....they weaned me completely off the metoprolol and then it started again after about 4 days. So, I think I can handle 12.5mg, it lowers my BP to about 89/50, but I can't tell it, no dizziness, etc.
Other than that, I really almost forget about the surgery. The surgery itself could not have gone any better and I think I can do it again, if I quit mooing in the next 15 to 20 years, lol.
Adam informed me that I had over 600 entries to my guestbook and that was just awesome, especially the day before my surgery. I've gone back and reread them (had to clear them out, part of my issue) and it brought back so many memories and feelings, mainly love and gratitude for all of you who were so supportive and encouraging. I won't list individual names, it wouldn't be fair, so many of you were there for me...but I do have to give a shout out to a couple...you know who you are...the sweet sweet soul who sent me the "Willie" doggie to watch over me in the hospital, the crazy New Yorker who made me laugh so much and really feel like I just might survive and to the beautiful, sweet one from Maine who actually came to see me at CCF...what a sight she was to see the morning after my surgery!
I read so many words of encouragement from sweet Cindy Pastrono, well, words just aren't adequate.
Anyway...just wanted to say to all of you guys "it's great on the other side", I'm in the best shape of my life and...oh yeah....GOOOOOO TIGERS!!!!!!!!
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.
It's almost football time!!! Goooooo Tigers!!!
Linda THE Tiger, AVR 3/13/12
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.
I am to continue with cardiac rehab, continue with the metoprolol and return in 6 months. They will do a CT in 6 months also to check the dilated (is it still??) aorta. Since it was "pared down" during valve replacement, hopefully it will be completely normal.
Hopefully, this is one less thing to worry about (yes...I admit, I do worry sometimes, lol).
It's still mightly hot down here in South Carolina and, as always, H-U-M-I-D!!!! Looking forward to football season....Gooooooo Tigers!!!! Headed to Clemson in about 4 weeks to move my grandaughter in, can't wait to test out this new valve on those Clemson hills! Hopefully will get to "meet up" with Ricki and Linda H. too!
So...just wanted to check in, let everyone know I'm doing well and wish all my HVJ family well. Will keep you updated!
Linda THE Tiger!
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.
I started out with the treadmill, very comfortable pace, no incline. Then I rode the stationary bicycle, did fine on that. THEN.....the elliptical (or as my daughter says...the HELLiptical!) OMG!!!! I've never had a lot of strength in my legs and this thing whipped my behind! Not to mention...2 1/2 minutes into the torture, the director shouted out to the cute little sports medicine fellow to get me off of it! It seems my heart rate went WAY up and I began to have several PVC's. They gave me water to drink and then sat me down for a few minutes. After a minute or two everything was fine. Don't know what was worse, the muscles in my legs pulling or getting the bejeebies scared out of me with the heart rate and PVC's.
So I was thinking...maybe I won't have to do this monster anymore...but no such luck...they said we will just "build up slowly". Yay........
So...tomorrow is another day, hope I will be able to sleep tonight and not lay awake dreading the HELLiptical tomorrow.
Hope everyone is staying cool. The weather channel says it will be 105 degrees here the weekend. Ugh!
Take care everyone and wish me luck with the monster tomorrow. I'll let you know how it goes!
Linda THE Tiger (well maybe kitty cat today, lol)
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.
Oh well, I started this to say: I'm gonna give it another shot this week (cardiac rehab). Wonder if it's too late to be of any benefit?
High fives for those climbing the mountain last week!
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!
I've read your journals and tried to offer some encouragement to those climbing their mountain and/or recovering from the climb when I could. I will admit I was a little depressed and discouraged, I truly have felt worse than when I had my surgery. So....I will say...if you are recovering from your surgery, even if it has been weeks...your immune system may still be working overtime on repairing your heart and those nasty cold viruses, etc may just slip by.
On a more personal note...my oldest grandchild graduated from high school last night. She attended a private Christian school and their graduation ceremony is much more intimate than that of public school. Nana did pretty well, as did Mama, but it sure was bittersweet. They have what is called a "Rose Ceremony" where they present roses to those who have made an impact on their lives and Brittany even had roses for PaPa (my Eddie) with whom she was best buddies before he died. She is such a special, sweet young lady and I am so proud of her. Doesn't hurt that she is on her way to being a Tiger (already is at heart, lol)!
Oh well...enough of that...just wanted to "stop by" and let you all know that I am still here, still amazed at all the new "valvers" we get...and I thought we were a rare breed!!!
Hope everyone has a great Memorial Day and thank you to all of those who serve and have served in our Armed Forces and also their families for the sacrifices they make for us all!
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.
Oh yes, by the way...my new computer arrived, not set up yet...and guess what??? The old, worn out, slower than anything one??? It's really fast now!! Go figure...just like when you take your car to the mechanic and it doesn't make the sound for him!! Oh well...that's life...and what a great life it is! Thank you CCF, thank you Dr. Gillinov and most of all thank you Jesus for your blessings!
Hope all you guys are hanging in, climbing your mountain and enjoying life after surgery.
Think I'll go for another ride, LOL!!
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!!!!
Even that was not as bad as I thought it would be...like I said..I have been blessed!
Thanks to those who have posted in my guestbook... I have not forgotten you...hope to "talk" to each of you soon.
Love and hugs to all of my HVJ family!
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.
I will just say to those of you I haven't "met" before, that this site is great!!! It will empower you beyond belief!. I will be 3 weeks out on Tuesday and I couldn't be any more blessed! I never completely believed our fellow "valvers" (sorry guys) when they said that the waiting was the hardest part....but it was absolutely true!
The minor shoulder, neck, back discomfort is improving every day. I am only waking 1 or 2 times during the night and the sweats have finally gone! I did sleep in the bed a couple of nights, but went back to the recliner when the shoulder pain seemed to intensify a little.
My stamina is improving every day, I'm sleeping less during the day, although when my body says "time to doze off for a little while" I do not argue with it, lol.
Unfortunately walking has been and will be an issue until I am able to drive. I live in a semi-rural area, plenty of houses, but no sidewalks. I have been forbidden to walk on the "roads", too unlevel, stray dogs, etc. Between that and the foot fracture (much better now) I have no idea how far I walk each day in my yard and around the house. I did get on the treadmill this week ( I know, I'm not supposed to) and seemed to do fine. Hopefully next week I can "catch a ride" to the gym where there is an indoor track to walk. I really want to be able to go with my grandaughter's class to Washington in May and there will be lots of walking!
Hope everyone is still doing well and I hope to "catch up" with everyone soon.
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.
I really have no issues other than lack of continuous sleep at night. I have moved back into the bed, that has helped some, but I still continue to wake up every couple of hours. I would also like to "return to sender" the hot flashes and sweats.
I have always had somewhat low blood pressure and the beta blocker makes it even lower, so we decreased the dosage to see if that will kick it up a little.
My incision is practically healed, the chest tube site is a bigger problem, located just below my incision, in the middle right where bra band goes, so I'm still not wearing one, lol.
I am a little tired, probably from the low BP, but all in all, I am great. I have no complaints. I have really been blessed.
Hope you all are doing well, sorry I haven't posted much, am having "old computer" problems along with "not much patience" problems...and the two don't go together really well, lol.
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.
While at the Cleveland Clinic, I received the cutest little stuffed doggie, looked exactly like Willie with a balloon with red hearts that read "I love you". There was no card and I could never get anyone to admit they sent it. I finally figured it was another "angel" from God, maybe even my Eddie. So...he sat beside my bed and watched over me while I recovered. Today, I learned who that angel is, and why would I be surprised to learn that is from one of you?
God, please don't let me forget these people and what they have meant to me and let me be there for any who may need me.
"Nothing Could Be Finer Than To Be In Carolina.....
Journal posted on March 19, 2012
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??
We got home late yesterday afternoon, and I am already in love with my recliner...much better than a bed right now.
Guys...I'm not kidding, I just don't know how things could have gone any better. I have not really even had any pain. I had a little discomfort (yep...the shoulders, neck, back) when I decided I could go from IV dilaudid (5 times stronger than morphine) to just Tylenol. One Percocet later, back to practically no discomfort at all. I had no complications at all. Did not have to be transfused, Hgb down to 9.2, but that's not at all bad, so far no sign of Afib, am on beta blocker temporarily just to make sure that doesn't happen. I gained 17 pounds during the procedure and lost all of that before I left. I got the mini....my incision is about 4 inches. The chest tube "incision" is midline instead of in my side, right where the "bra" goes around, so I will be "bra-less" for a while, but hey...that is completely okay.
I just can' get over how blessed I am. I thank God every day for putting the Cleveland Clinic, Dr. Gillinov and the entire staff in my path. I wouldn't try to "push" a facility on anyone, but I just have to say...it is top notch in every way, every department. Yes I went to some added expense to travel so far...but it was so worth it. I have no regrets at all! In fact, I just wish I had done it earlier and wish I not burned so much energy "worrying".
For those still waiting on surgery... waiting really is way worse than the experience itself. From my experience, having my gallbladder removed in the 70's was way more difficult than this!
Thank you to all of you who have been so supportive and encouraging during my wait. I'm sorry I didn't believe you, lol. But...you were right. I did everything you all told me to do, did everything the doctors and staff told me to do and things just could not be better. And you know what???I think I actually feel better! Maybe I really did have a bad valve, lol. Btw, it turns out, the valve was bicuspid.
Now, if the itching would just stop!!! But that's a good thing!
Love and hugs to you all!
Linda THE Tiger! (Grrrrrrr, mooooooo!)
Hey 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!!
Good luck to all of you guys!! Linda the Tiger can carry on from here!!
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!
Will updatea again before we get on the big bird back to SC!
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!
She 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..
Sorry 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.
Mama 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.
10:00 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.
Hey 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.
Oh and we instructed the doc yesterday, that pig or cow valve wouldn't work, we needed the Tiger valve... heck yeah!! At least thats our story and we are sticking to it.
Will update soon!
Tracie (Linda's wonderful beautiful and IMPATIENT daughter)
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.
We decided to go with the tissue valve, either cow or pig, he will decide that according to size needed when he gets in there. He says I have a 75% chance that this will be the only surgery I will need, but if that isn't the case, he believes it will not require OHS by that time. Of course, I know that isn't a guarantee, but then you know what they say about that...taxes and (the other thing, lol).
So, all in all, everything is good, I'm ready to go. I've reached
the "calm place" and looking forward to getting it over and starting my new chapter.
Just want to thank you all for the awesome support and encouragement you have been. I will be there for you as well when your time comes. I especially want to thank Adam...for this site...and for getting me "hooked up" with Dr. Gillinov.
Adam...so you know...I told Dr. Gillinov you said "hi" and he replied "he's a great guy". I told him " I think so too". I felt like I was meeting a rock star or something. When he walked in and said "hello, I'm Marc Gillinov", I said I KNOW!!! and actually teared up. So thank you, thank you, thank you.
So...Tracie will take over for me after today, I promise she will keep you guys updated. She knows she better!!!
Love and hugs to each of you!
I'm going to climb over that mountain now....
I 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 would have never known he had surgery had I not seen his scar peeking out of his shirt. He was on the hotel elevator with me and as soon as I saw the scar...I asked him "did you have heart surgery??" Luckily for me, he was the angel sent to bless me and did not tell me to mind my own business. Instead, he spent a great deal of time with me, assuring me I will do fine. He said he had no pain after the first day and that even then it was not so bad. He shared a funny (funny now, not then) story about when he awakened in icu. He still had the breathing tube in and he overheard someone saying "it's been 22 DAYS and as soon as we pull the tube, he will die". He said he immediately starting motioning for the writing board to write...NO!!!! I'M NOT GOING TO DIE!!!! Like I said, it's funny now but I can imagine how he must have felt at the time.
Anyway, I turned him on to the HVJ site, hope he will share his stories with others, but he may have been sent just for me and instead of checking out to fly back to Colorado, he may be back in heaven right now. Either way...thank you God.
I will let you guys know how tomorrow goes, meet with Dr. Gillinov finally and get some final decisions. But...I think I am just about there...feeling a bit of eerie calm...
Hope all recovering are feeling great, those waiting...let's get this done!
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 testing went smoothly until my preop clearance. Had a very long wait at that point because my nurse had to leave to pick up her sick child (what??? they are actually human too??). But all in all, things went well, just made for a long, tiring day.We will try to have some fun over the weekend, although I'm trying to stay away from people as much as possible. Don't want to "catch" anything and have to postpone surgery.
It is amazing the different people we see here, from so many different cultures, they literally come from all over the world. The young man we met Thursday night (liver tumor) had surgery yesterday and it went "better than expected". Praise God!
Well...time to go find some breakfast. Hope it warms up a little today, it's supposed to. Thank you so much guys for all of your support and encouragement. I was telling Tracie yesterday, "I've got to let my HVJ friends" know what's going on. Most all of my "how are things going" inquiries have been from all of you, more than extended family even. You will never know how much it means. Much love to you all...especially Adam....thanks Adam...you have blessed so many of us!
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!
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.
I have had a very busy day getting Willie the dog situated, decided to let him keep a very good widow friend of mine company instead of the "zoo" at my daughter's house. Think he will be less anxious there. I promise...his suitcase is as full as mine. 2 different beds depending on what kind of mood he is in, 3 different kinds of treats, depending on what kind of mood he is in and 2 different meds depending on if he is hurting or if he is afraid. (He freaks during thunderstorms).
Then there has been the packing, omg, I'm tempted to just take nothing, probably won't use 1/3 of what I am taking, but being there so long before surgery, I needed some "real" clothes.
Didn't sleep very well last night, woke up at 4:00 AM not able to go back to sleep. First time in a while, guess it is to be expected. How am I??? Nervous, I won't lie. Mainly, just ready to get it over with. Have felt like crying a few times today, but have not actually done so yet. There's still time, lol.
Whew!!! Received the authorization from my insurance company TODAY! Nothing like waiting until the last minute!
So, for now I will pack and unpack, pack and unpack and finally just give up and shut the darn suitcase! Will let you guys know how much fun the flight was tomorrow.
Thanks to everyone who has helped me get to this point. Thought for a while is would never get here, but looks like it has almost arrived. Your support, encouragement and prayers has made all the difference.
So...my friends...will talk when I get to Cleveland!!!
Hold down the HVJ site while I'm out!!!
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.
Now...about my "Seriously????". Went to get the mail yesterday and there in my box was a letter from Cleveland Clinic...reminding me of my appointment!!! Seriously???? You really think I might forget??? Well...on 2nd thought...maybe I could??? Hmmmm.......
Thanks to everyone for their suggestions for clothing, etc to take. It is crazy to think I will be leaving SC on Thursday with highs in the 70's and arriving a couple of hours later in Cleveland with highs in the 30's and snow on the ground! Snow??? Yikes, we South Carolinians don't even know how to act in snow.
I will try to "talk" to each one of you individually, but those going before me next week: Jan and Jeff, go get'em and show the world how strong we HVJ patients are!! You will be in my prayers and love to you both.
Jim, you and I will be in "la-la" land on the same day. You think we might "connect" on some other level why we are "under the influence"? Who knows, we might, lol. We can "hold each others hand" in our thoughts and prayers, though we will be miles apart. Tell Donna to call my daughter Tracie (843-858-4569) if she feels like talking to someone while we are climbing the top of our mountain. I don't know if she will have family there with her, but my daughter will be alone, so she might welcome someone to talk to.
I hope all of you out there are safe from the storms. I know we are all over the country, so I pray you all have fared well.
Chris, (non-cuz) if you are reading this, buddy you gave me a little scare, but I forgive you, lol. Glad to hear you are doing so much better.
Well...that's all for right now. Just wanted to let you all know, I am okay (relatively speaking), just getting things ready. Will talk again later.
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.
I'm trying to decide what and how much clothing to take to Cleveland. Do I need to get snow boots? Apparently they will be having snow at least the first 4 days we are there. I won't go into the hospital until day 6. I will be leaving SC where we are having daytime highs in the upper 60s and 70s, lows in the 50s, so snow is a very big deal. I know I won't care about clothes during hospital and after discharge, but the days before...I don't know how to deal with that.
So..in all honesty, I'm a little overwhelmed right now. Feel like I'm back to when the "bomb was dropped". I do not like not being in control! Yes..I definitely have control issues....
So, I'm just trying to put my foot out and keep the next week from going by so fast. I sure wish I would wake up from this dream!!!!!
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!!!!
I'm getting that knot in my belly feeling again! Have you all been lying to me????? Am I going to curse you all when I'm back to life???
Nah....I'll probably lie too, lol!!
Just teasing you guys :-)
Got a new power recliner...this one very comfortable and the store let me return the "rock". Thank goodness! It's pretty bad when my chihuahua won't even sit in it, lol!
Well, I leave for Cleveland 2 weeks from today. Actually, I should already be there 2 weeks from today. I am still a little nervous, sometimes more than a little, but at the same time, I'm ready to get it over with. When I am recovered enough I am going to start a new chapter. I am going to get out more, I have shut myself off from the world too long, my heart is still broken (emotionally) and probably always will be, but physically it will be fixed! I'm going to do cardiac rehab and then join the gym and make myself carry on! So there!!!
Thanks to everyone for all your support, Mitch...special thanks for making me laugh so much. But cut it out from March 13th to ?????. When does it not hurt to laugh??
Haven't heard from Jimmy the last day or two, I'm hoping he is still doing great. Nancy is off to Florida vacation and all is well. Chris, Jeffrey, you're up next. Will you tell me the truth...or are you gonna lie too??? LOL! Yep, you'll lie.
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!
I guess you have all seen that Dr. Gillinov has written a book, just released a few weeks ago. Now I know why I had to wait so long...he has been busy signing books! I friended him on Facebook and told him not to sign too many, I needed his hands to be very, very steady on March 13th! He assured me they would be, lol!
Have had a good weekend. My grandaughter is headed to Clemson! Yay! Goooo Tigers!! That was exciting news, now I really have to get this valve replaced! For those who have never been to Clemson...many, many hills to climb. But the beauty of the place makes it worth it!
Also had a great service at church yesterday. My pastor had a great sermon just for me (actually they all seem to be, lol). It was about our tongues and what we speak...if we speak negative...we get negative. If we speak positive...we get positive. So along that line...I WILL DO THIS, I WILL HAVE SUCCESSFUL SURGERY AND I WILL RECOVER COMPLETELY!!!
I splurged on myself today and bought a "fuel injected, auto ejection lift recliner" for my recovery. Just hope it doesn't throw me out, lol!!!
Looks like our buddy Jimmy climbed his mountain today and is ready to slide down the other side, a new man! Way to go Jimmy. And thanks to Blythe for keeping us informed.
Well, time to turn in, have to get up early in the morning. I have someone coming to prune my grapevine and pear tree.
I'm doing pretty good (today) and my foot is feeling better. I will do this! I will do this! I will do this!!!
Hi 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!
Well...bad news is...hairline fracture in top of right foot. Good news...hairline fracture in top of right foot.
I do have a hairline stress fracture, but it should not interfere with my surgery (guess that's good, huh???, lol.)
I just have to keep it stabilized with ACE bandage, hard bottom shoes (tennis shoes) and stay off of it as much as possible. Then go back in 10 days for another xray. Treadmill is strictly forbidden!
I had hoped to walk a lot more prior to surgery, but guess that isn't in the cards. At least it isn't something that requires a cast, can you picture that? Walking the halls of the Cleveland Clinic after surgery with a cast on one foot? I don't think that would be a lot of fun.
Anyway, other than that I'm doing okay (this week). Time sure has sped up over the last couple of weeks. I leave for Cleveland 3 weeks from tomorrow. Wow....
So guys it seems that I'm really getting closer...
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!
Had a few butterflies come around today out of the blue...I was doing so well for a while! I'll be okay...won't I??
I have done something to my foot, took one step on the treadmill and ouch! Hoping it isn't a stress fracture...can you see me walking the halls of the cardiac unit at Cleveland Clinic in a cast? I've wrapped it in Ace bandage and it feels better, only hurts when I walk, lol.
Praying for all of us, those recovering and those still waiting and especially for Kelly. If anyone has an update on her, please let me know.
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???
Emotionally I am doing a bit better this week, have been working a little, so that takes my mind off things for a little while. Several friends have had their surgeries the last few days and it has been encouraging to hear they are doing so well.
Have been thinking about getting someone to "house sit" while I am gone, thinking that might even be better for Willie, my chihuahua. So many things to think about.
Also went to my chiropractor today and got a much needed adjustment...feel much better already.
So...just wanted to stop by and say "hello" and thank you to all who have been so encouraging. A big shout out to Mitch who has conquered his giant! Way to go Mitch! Has anyone heard from Kelly? Praying her surgery went well. And to Mitch's non- cuz Nancy, lol, good wishes for your cath Wednesday, may everything be clear for your big day Thursday!
So...I've changed by sign off..no longer still waiting...now it's :
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".
I have had quite the weekend. If you have looked at my pictures, you have seen that I have three beautiful grandchildren. They attend Emmanuel Christian School. Brittany, the oldest, is a senior this year and Friday night she was crowned "Homecoming Queen - Miss Crusader - 2012". She also received the "Christian Testimony" trophy in volleyball. I am quite the proud Grandma!!! I am so blessed to have such wonderful grandchildren. Brittany is such a good girl, she spent every night with me for a year after my Eddie died. Not many 17 year old girls want to babysit Nana every night.
I have received so many notes in my guestbook from you guys, and I appreciate them so much! I'm trying to accept the fact that I have to wait until March 13th for surgery, everything happens or doesn't happen for a reason and
I really don't want to mess with the plan God has for me!
I know several of you are having surgery this week. (Oh...I'm tempted Mitch) but I am not going to say that's not fair! I have written down everyone's date (my memory ain't what it used to be - think that could be heart related, lol) and I have you all in my prayers. I'm going to try to get to each one personally, but if I leave anyone out, just know that we all are praying for, thinking of and loving each one of you!
Wrote this in response to Janis' post earlier, but want each of my HVJ friends to know it applies to you all.
Thursday, January 26, 2012 07:23 PM
I think John's mantra just about sums it up, prayer, hope, don't worry. Thank you Janis for sharing that. I had a moment today, I was listening to my "relaxation, guided imagery" tapes from CCF and there is a part where you "imagine" your "healing circle" of family and friends. I don't have a lot of family, I am an only child, my mother is deceased and my father in poor health. I have one daughter and three grandchildren. As I imagined my circle, I saw all of them, I saw my church family and I also saw my HVJ family. And...I lost it. Completely out of nowhere this rush of emotions that made me think "well, so much for these tapes...what's up with making me cry?". And then I thought, I know how much my family and church family loves me....but they don't really understand like my HVJ family does. I am so thankful I went on the internet whenever it was, a few years ago and somehow came across Adam's site and book. Even then, I didn't really get it about the journal site. But now, I can honestly say, this has been my relief. This has been the support that even my family cannot provide, because they don't really know, they don't really understand.
I am 63 years old and have actually been through quite a lot in my lifetime and I know this may sound sappy...but I don't really know if I could have done this without you guys. I think I may have been inclined to just say "I'm not gonna do it, I'll just let whatever happens happen". But reading the journals of those before me, laughing at the incredible humor those who are recovering still manage to exude, well, it's just an inspiration. And I am beginning to believe " I can do this, I can really do this!".
Wow, didn't mean to go on like this, just something about your journal entry got me going.
So happy you are doing well, I think I heard you burning a little rubber earlier didn't I?
Hello 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.
Hope everyone recovering is doing well and everyone waiting.....what can I say??? Waiting sure is tough. If I knew something to say to make you feel better...I would say it to myself. About the only thing I can come up with its "well, at least I'm not in pain yet". That doesn't give me a whole lot of comfort...but what can I do??
Hard to believe January is almost gone!
Thanks to everyone for your visits to my guestbook.
Hi there guys, I'm still here, still waiting......
Trying to keep busy and my mind somewhere besides the OR at Cleveland Clinic!!!
I think I may be experiencing a little more fatigue than usual, some slight tightness in my chest from time to time and a slightly annoying little cough which is also intermittant. Probably just suppressed (well....somewhat) anxiety.
I bought myself an inexpensive MP3 player yesterday and asked my grandaughter to come download the guided imagery tapes provided by Cleveland Clinic for relaxation.
She was planning to come over Saturday, but last night, I got it out of the package, figured out how to hook it to the computer to charge up and DID IT ALL MYSELF! Yes I did!! And....I think they are going to help with some of the anxiety. Might even add a little "boogey music" for when I'm walking the halls at CC. You think I might be a little overly optimistic?
Well, just wanted to say hello to everyone. Thanks for the encouraging words, thinking about Dick today and Tameika going in tomorrow for surgery on Friday I think.
So...yesterday I had a real meltdown, my first and hopefully, my last.
I hesitate to to expose my weakness for the entire HVJ world to see, for you see, I am the strong one. I cannot be weak! I cannot let anyone know how scared I really am.
I am blaming it all on the weather! It was a very rainy, dreary day here in SC yesterday, didn't have to work, so I had too much time to sit and think! This waiting is so killing me. I wish it were today! I almost wish I had decided to go somewhere closer to home for surgery, maybe they could get me in sooner than Dr. Gillinov, his schedule is very full. But, not really, I have wanted to go to Cleveland Clinic ever since I knew that someday I would need the surgery.
Then there is my chihuahua Willie. Willie was originally my husband's dog. Since Eddie passed away Willie has become very clingy to me and as silly as it may sound, I cried for hours yesterday worrying about how he will do with me being gone so long. Worried about him feeling like I have abandoned him. Oh goodness, here I go again.
I am trying so hard to stay positive. I'm not so worried about myself (well...I don't like the idea of the breathing tube at all!), but everyone who has gone before me says it isn't that big of a deal, if they even remember it. I know I have to be positive, and for the most part I am, but yesterday was just a funky day!
Sorry to go on and on, but hey, I guess that's what journals are for. Well...now to the car dealership...have to take my car in...not looking forward to that either, lol.
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.
Having a little case of the "nerves" today for some reason. Most days I'm okay, even when I think about it, but every now and then I get that feeling in the pit of my tummy that says "WHAT??? OPEN HEART SURGERY???OH NOOOOOOO!"
Tomorrow should be a little better, I have to go in to work for a few hours, so that should take my mind off of my "broken" heart for a while.
Hope everyone recovering is having better days every day and for those who are getting closer to "the day"... everyone says this is the worst part....I'm counting on that!
Next step is making up my mind for sure about the hotel. (I never said I made decisions quickly, lol)
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 went shopping today with my daughter and oldest granddaughter (yesterday was my birthday) and got some goodies and my travel pillow (thank you Jane). Trying to decide about the hotel accomodations for my daughter. I know the International is pricey, but I haven't called yet, so I don't really know how much pricey is, lol. We live in SC, where even the possibility of snow is remote and I just think I would be more comfortable knowing she can come to the hospital thru the skyway and not have to be on the street. When I talked with the fellow in registration, he said they still get snow storms there even in March, so, it's only oney, right??? Don't have a clue how much this going to end up costing, but at least I have insurance. Oh well...I digress again. Hope everyone is having a good weekend. Those still recovering...hang in there....they tell me this too shall pass. Will talk again soon.
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.
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.
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 :-)
Happy New Year!
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??
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!
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?).
Hi 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!
Day 2, December 15, 2011
Well all my records are on their way to Dr. Gillinov, will probably hear something soon. Met with cardiologist today and told him I decided on Cleveland Clinic and Dr. Gillinov. So, now I wait. Thanks for the messages that I have already received, I can tell this site is going to be great support! Will journal more when I know more, lol. Ladies especially...continue to send me your tips on recovering.