So Many Improvements!

I've really come a long way these past two weeks. I'm able to do so many things that were uncomfortable to do just two weeks ago. My stamina is building, in fact we walked for hours at the state fair two nights ago and the only discomfort I felt was in my legs. My back pain has subsided quite a bit except when sitting on hard chairs -something that probably hurt my back before the surgery. A week ago it really hurt me to brush the pool, this week I brushed and vacuumed it and felt fine, I can put the fitted sheets on the beds by myself (the fourth corner has been a killer up until this week) I can walk a half mile and hope to double that by the end of next week. (not sure if that's going to happen, though) I successfully wrestled two cats to the vet (they are both fine - Ashley and I just needed to be sure after K.C.'s episode) Yesterday we spent the day by the pool and I was easily getting into and out of the lounger by the pool with no help, something that hurt two weeks ago. And here's the exciting one . . . I even layed on my stomach on the pool lounger and felt fine. (I felt a pull at the incision when I got up, but I was thrilled with that accomplishment.) Using the hoe two weeks ago hurt very much, I'm hoping it's gotten easier, too. I have two more small gardens to get cleaned up, the weeds have driven me nuts all summer, but the bulk of the weeding is done. Sleep remains my biggest challenge, but I'm feeling like myself again and I'm excited to see if I'm ready for situps. I still have to be really careful with how heavy I lift and certain twisting movements, but overall, I'm in a much better place. I have to say, though, that I am one huge bruise - being on the blood thinners has made me bruise incredibly easily. Wrestling the cats into the cat carrier did a number on my legs. (So if you see me and notice I'm looking black and blue, don't be alarmed :0) I am relieved to not feel quite so disjointed, though the connection between my sternum/ribcage and my stomach area will probably always feel off to me. God is wonderful and I'm thankful to be feeling like me again. Hope everyone is doing great and I can't wait to see the whole family in Tennessee. We are car shopping today, wish us luck, as I really feel uneasy about driving the Explorer all that way. Thank you for still checking on me!
Love to all!
Joyce

On Our Own

We left last Monday to take Tony's mom home to Pennsylvania and returned yesterday, Saturday July 5th. Words can't express the appreciation and gratitude we feel for the sacrifices and help we've received from all of the parents, mine and Tony's. It feels strange to be without them.
Some sad news . . . Our cat of 13 years, K.C., took a turn for the worse around 4 AM this morning and we ended up having her put to sleep around 9:30AM. Anyone who has ever lost a pet surely understands how sad we are. I feel particularly guilty for leaving her here this week, but I had no idea she was feeling so poorly. Apparently she was hanging on for our return (Or God kept her going until we returned.) She seemed fine when we arrived home, but was breathing harder than usual at 11:30 and I awoke to her deterioration around 4 AM I stayed with her, hoping she would pass peacefully and naturally, but watching her suffer just was too unbearable - by 9:00AM we decided to help her in her passing. (I haven't gone more than 30 minutes without crying all day - reminders of her are everywhere.)
As for my recovery, I am doing well, my stamina is building and my bad days aren't nearly as bad as they were just two weeks ago. I still have a lot of trouble falling asleep and getting back to sleep if I awake in the night. I've survived three sneezes this past week - not fun. (So glad that didn't happen any sooner than this!) I begin rehab tomorrow morning (6:30-7:30AM) I'll let you know how that goes. I have to go get a tissue - K.C. would normally be trying to lay on the keyboard while I type this. I miss her terribly already!

Love to all!
Joyce

Visited the Surgeon Today

Tony's mom and I went to see the surgeon in Philly today for my one month post surgical check up. (Hard to believe it's been one month already!) He and his nurse practitioner very firmly pressed on my chest around the incision and declared my sternum very solid (I'm declaring it a little too bruised still for so much pressing!) My x rays apparently looked fine, and after answering a long list of questions that I shot at him, he released me to my local cardiologist's care. (Exciting, but also a little scarey) The hospital won't need to see me again until it's time to replace this valve (In fifteen to twenty years, hopefully, although when I was gathering my things to leave Dr. Pochettino remarked that he'd see me in about a decade - I didn't say anything, but I'm hoping it's closer to two decades.) Even though I asked a million questions, I still keep thinking of more I forgot to ask.

He released me for cardiac rehab, which I will set up locally through Dr. Singh's office. I can also drive around town to run errands. (Of course I didn't mention that I drove in and out of the city for Larue.) I'm allowed to lift up to twenty pounds now, instead of up to five. As for how things are progressing, I'm going longer periods before running out of steam, but still find that laying down and stopping for a period of time during the day is still very necessary. (Didn't do that today and I'm paying for it now, I can't sleep and I'm really restless and sore.) I'm finding the physical recovery is much easier than I had anticipated - I had expected much more pain for a much longer period of time. For pain I'm down to two advil as needed throughout the day and haven't needed the stronger meds since the first week home. I still haven't experienced my first sneeze yet, but have come close many times. (Sounds silly, but I really think God is making that possible - I usually sneeze everyday, it's been a more than a month since my last sneeze. I dread the moment it finally happens.)

I'm having a bit more trouble emotionally than I ever expected to. I assumed I'd just be so happy to be here, I couldn't possibly be sad about anything, but I'm finding that logic isn't working. I'm still wrestling with adjusting to this "new" heartbeat. My entire upper torso seems to have been implanted from someone else's body, nothing feels like it's in quite the same place. Falling asleep remains a big battle most nights, but I'm sleeping for longer periods once I do fall asleep. I can't help but think about the "next time" from time to time and it's an emotional thing for me to address. I keep thinking mom and dad made me feel like their little girl again and they did so much to help me through this. Being Ashley's mommy gave me complete and total purpose and focus on getting through this. Tony guarded me and held me up through the whole process, from the first day that we learned surgery was unavoidable. Friends and family prayed and carried me through so many trials and triumphs along this journey (And thank you so much for continuing to do so!) My greatest fear is that I'll just be a lonely old lady the next time I have to cross this bridge. I keep thinking of Gerry, my hospital roommate, who was unable to go home because there was no one to care for her so she would have to be released to a rehab facility. I just don't want that to be me.

I know, there are just so many people in the world with much more to be concerned about and I have an immense number of blessings that I am so very thankful for. I'm riding through the blue moments and savoring the energetic happy ones - I'm truely amazed at all the successes I've experienced in such a short amount of time. Thank you to everyone for your continued prayers. Life is great and God is wonderful!
Love to all!
Joyce

Sorry for the lack of communication . . .

My computer, or my modem, or both, have had issues and logging onto the internet has been a challenge. The plavix seems to have corrected the vision issues so no need to do the TEE right now (yay!) Last Friday was a big day for me, I had two doctor appointments (both said I'm recovering "remarkably well,” I lay flat on my back and on my sides for the echo (two things I thought would make me break, but turned out to be not so bad) no nap all day, and a visit with friends from work at Smith and Co. that evening. First day without a nap and lots of on the go activity - I was so happy to be feeling like things were normal again,
but . . .I wasn't feeling quite so normal for the remainder of the weekend - very sore and run down. My sister came to visit with her beautiful baby, Ava, and I was so happy to have their company for Ashley, myself, and for mom. Dad arrived on Tuesday, planning on staying through the weekend. Tony was happy to have another guy around. Judy left on Wednesday heading for Northern VA just in time for the severe storms. After the storms/tornadoes last night, Dad had to leave this morning to assess the damage at his house in Virginia. Nothing terribly serious, but some beloved landscape was damaged. He’s really been traveling a lot these past few weeks.
I visit the surgeon on June 19th and hope to be cleared for driving and rehab - so that feeling of being normal won't seem so far off. Hope everyone is well and thank you again for all your support and encouragement! We will post some pictures from the hospital soon. Stay in touch!
Love,
Joyce

My Vision

I went to Dr. Stump, an opthamalogist, yesterday. He wasn't able to see any blockages in my arteries, but was still concerned. He and Dr. Singh decided to put me on plavix for a while to be on the safe side. I will be going for an echo on Friday to determine if there is any scar tissue or other such item blocking blood flow around the surgical sight. I will also be doing a TEE (Transesophogealechocardiogram) where they do the echo with a scope down your esophogus - not pleasant, but it will give them a good look at everything. My vision is still doing very odd things, but in general I feel really well. Still getting very tired, very quickly, but I'm doing well. Thank you to everyone for your continued well wishes. Can't wait to see everyone!
Love,
Joyce

I Don't Know Where to Begin

Thank you, thank you, thank you. I am overwhelmed by all the love and prayers expressed in the blog entries. (It's taken me most of the evening to get caught up.) This has been such a traumatic week for all of us. My memory of the first three days comes and goes and I am so grateful to be through the hardest parts. The goodbyes right before the surgery were absolutely excruciating. From that point on, I think I had the easy part on Tuesday. I can't even imagine how hard it was for Tony and my family to sit and wait. After saying good bye to Ashley at our house Monday night and riding off toward Philly, I worked through all the tears, called all my siblings and told them I loved them and a calm came over me that I just can't explain. It could only have been God answering prayers. I remained calm and actually slept that night in the hotel until 3 am. I had to shower with a nasty soap (I think it was 9 parts rubbing alcolhol and 1 part soap.) and then we trekked across the street to the hospital. After two very difficult good byes, I was taken to the OR and the prep began. I was handling things okay, until more and more faces peered down at me hooking different monitors and IV's into me. I had been promised happy juice to calm my nerves and requested that they let it flow as soon as possible. That's all I remember. I can't place the moment I awoke in ICU, it's very fuzzy, but when I did, the tubes in my throat were the worst form of torture I could have imagined. I was most afraid of the ventilator going into the surgery, and it proved to be a very ugly beast. They won't remove the tubes until you are fully awake and breathing on your own. I fought very hard to wake up, but it was so hard. They only let two people in to see me at a time. I kept dozing off, no matter how hard I tried to stay awake. Each time I started to gag, the nurse had to push the tubes in farther. (Not exactly helping, but I'm sure there was a medical reason.) At one point I started requesting paper and pen to write notes. The nurse was preparing to give me more sedatives and they were discussing leaving the breathing tubes in for the rest of the night. My brother, Buddy, finally figured out that I wanted paper and pen and a very interesting correspondence began. My parents saved the paper for me and I read over the notes this morning. (It was very surreal, as I don't remember much of it.) I was actually cracking jokes! I told the nurse not to give me sedatives and asked for her to put caffeine in my IV instead. Tony and his Dad (God love them) they were trying so hard to keep me awake by gently rubbing my arms. (Talk about putting a sleepy person to sleep in a hurry!) I was getting so frustrated. I wrote them notes to pinch me. (They wouldn't oblige!) I remember Mark and Jessica coming to say good bye and I was so amazed that everyone had stayed so long (Like I had any idea what time it was, it just seemed like weeks had passed!) Tony kept telling me visiting hours were over and I couldn't believe he wasn't able to stay with me. The nurse was very sweet and let him stay until I could get the tubes out. Not sure how long the fight for coherence went on, but I vaguely remember her pulling the tubes out and smiling. I remember trying to talk and my voice was so weak and hoarse. I don't remember much else from ICU until the tubes were removed the next day. (What a gross experience that was - I'll spare you the details) The guy that was assigned to move me from ICU to a new room was in training. I tried to be encrouaging, but my morphine had run out and his technique needs some work. I didn't even look out the window at my Philly view until the last morning in the hospital. I was really sad that they wouldn't let Tony stay the night with me in that room, either. It was a long and miserable night. My blood pressure kept dropping really low and far more than the usual once an hour wakings from people with needles, thermometers, and blood pressure guages insued all night long. I kept asking each new face that appeared by my bed, "Is this normal?" They each assured me everything would be okay. I was so glad when the sun came up. I began having migraines from the moment I awoke in ICU and they continued my whole time in Philly. I only remember about 5 minutes of all the time Karen spent with me. Karen, I can't thank you enough for bringing my baby to me, and Cathy - I'm so sorry you were sick, but I can't wait to see you when you are better-thank you for being so willing to bring her, too. I remember someone removing my bandages while Karen was there and I recall saying the scar reminded me of the zoom, zoom road. Looking at it now, it is pretty straight - really ugly, but straight. I also learned that Karen is very good at fibbing. She said I looked really good (I had to be nasty!) Some nurses are sweet, others, not so much. The nursing assisntants didn't seem to take much pride in their work and wouldn't help me get washed off in the morning. I did the best I could, but I that's not saying much. It was thought that the morphine was causing the migraines, so they took me off morphine Thursday night and forgot to replace it with something. (Loooooooong night!) It didn't look hopeful that I'd be going home soon, I could barely move and I had bloated up with so much water, it hurt just to move my arms and legs, much less lift them off the bed.) I finally received a pain killer 10 AM the next morning and was a world better within an hour. Amy, your comment about WW cracked me up. The silver lining in all of this was supposed to be that I'd finally lose a few pounds and when I stepped on the scale and they said I had gained 30 pounds I about fell over. (Tony had a really good laugh about that one.) I've almost gotten all of the water weight back off, but I doubt I'll be dropping anything extra. :-) Hard to believe you can eat broth for a week and still be heavier at the end of it! I must have been feeling a whole lot better by Friday night, because all I could think about was steak and potatoes. I sat up all night staring out the window feeling my heartbeat. I could see the hotel my family was in from my window and I kept trying to figure out how I could get from my room to them. I was getting very weirded out by my heart beat. (Sounds ungrateful, and I don't mean to be at all.) When I try to just sit quietly I am unable to because my whole body shakes. It literally feels like I'm sitting on top of a subway station, like a train is plowing right through me. It just goes to show how weak my valve had become. It will be a while before I'm used to the volume this new one produces. Everyone that came to check my vitals had to hear how much I wanted to go home and they all said I had to see what the doctor's said in the morning. One of the nicest nurses, Sue, gave me something very strong to knock me out, I'm sure so she could get some peace. I slept in the chair all night and woke up at 5:30. I called my husband and told him to come and get me. "I can't, I'll be over at 11:00" I tried to explain that I couldn't stay another night. That the smell was disgusting. (hospital smell - never noticed it until Friday night and then couldn't stand it) I waited in the hall for the doctors to make their rounds and follwed the nurse practitioner around until she got off the phone. As soon as she did, I announced, "I want to go home" She said okay. When I called Tony back and told him to come and get me he thought I had dreamt it. He sent my mom over to see if I was losing it and by the time she came in I was pulling things out of my bag to get her to help me shower. It was a long morning and a long ride home, but I am so glad to be here! One complication that has occurred is my vision is doing very strange things and I'm starting to think my migraines at the hospital weren't really migraines at all. Many people develop micro embolysims after being on the heart/lung machine during open heart surgery and it is quite possible I have developed them as well. I have been in communication with my Doctor in Delaware (Dr. Singh) and will be seeing an opthamalogist tomorrow to determine if there are embolysims present and if I need to be placed on blood thinners to avoid a stroke. I will add another entry tomorrow night to let you know what I find out. As for me taking it easy - I really have no choice. Tony has been so protective and I am just going to enjoy all of the care and concern. It's wonderful to have Mom here, though I know she is missing Dad. I would like to end with a very sad message to my Aunt Maureen and all of her family. I am so sorry for the loss of Diane and I wish I could be with Dad for the funeral. (He and mom were pretty stern in their refusal to let me go.) I love you and will be praying for you as you go through the difficult days ahead.
Thank you so much to everyone for caring. We are humbled by the outpouring of love. I look forward to seeing everyone and showing off my really ugly scar :-) I love you all so much!!!
Joyce

Great News-Mom's Home today!

Mom came home today thank godness! She is up and walking fine today and is a little tired today but she is glad to be coming home today. She couldn't stand the smell of the hospital any longer. Thank you guys for all your comments. If it wasn't for you guys mom would still be in her hospital bed right now.
Ashley

Joyce is up and around!

Joyce had a relatively good night. They have taken her off the morphine and I think that has now eased her migraines that she has been having. She also was having some fluid buildup and that has also been considerably better this afternoon.
Just as I was coming down to use the available terminals to update this blog, they were having Joyce walk the hallways. Then they took her for a session with fellow heart patients to discuss what to do/not do when she goes home.
She hasn't eaten solid foods as yet and there has been no discussion as to when she might go home. I'm fairly sure it won't be for a couple more days at least. She looks good .. great color .. excellent heart beat .. and she is starting to feel like she is on the mend!
She still hasn't seen your comments but I'm sure she will enjoy reading them when she can. Thanks again for all your prayers.
God Bless! Art

Mom is doing better

This is Ashley and I came to see mom today. She has been sitting in the chair and they have had her up and walking twice today. She seems to be getting better and sends everyone her love.

We will send you updates later to let you know how everything is going.
Ashley

Joyce out of ICU

Joyce has been moved from ICU into a room with a beautiful view of the Philadelphia skyline! She is somewhat sore and tired but is in good spirits. It seemed to take forever from the time they said that they were moving her until they actually did .. 1pm to 4pm!
She said to say Hi to everyone and to thank you all for your prayers and support. She hasn't been able to read your posts yet as we have no portable PC with web access.
She is now in SILVERSTEIN Bldg, Room 1023B .. 10 floor. She has a room phone but it will probably be awhile before she is up and able to answer. 215-614-1714. Wait a day or two before calling directly.
Art

Off Ventilator

Good Morning! Good news .. Joyce was taken off the ventilator around 9pm last night. Tony was able to remain in the ICU until almost 10pm. Joyce was doing much better and was delighted to have that out of her throat! Tony and her talked for awhile. Tony returned to the hotel in much better spirits.
I forgot to mention yesterday, the thrill Jan (Joyce's Mom) got when she went to see Joyce for the first time in the ICU. She couldn't stop staring at the heart monitor. The heart rthym was perfect .. really looked beautiful!
We can't get to see Joyce until after 11am today. I'm sure she will be much improved from yesterday.
Art

Joyce is resting ...

Joyce is still in the ICU and will spend the night there. She still has a ventilator but is trying harder to breathe on her own. She seems less agitated and appears to be more comfortable. We have said our good nights and will see her again in the morning.
Art (Joyce's Dad)

Operation Complete .. Joyce did good

Dr. Pochettino came and reported that the operation is complete. Joyce did very well during the procedure. They replaced the valve after finding the problem that they thought was there. Howver, they felt that the aorta did not need replacement. So the operation was somewhat shorter than the five hours that was estimated .. about 3.5 hours.
He said Joyce was being moved to the intensive care unit and is currently on a ventilator until she is fully awake. That may be several hours and she will stay overnight in the IC unit.
Thank the Lord that everything was successful! Thank you all for your prayers. I'm sure Joyce will want to extend her thanks personnally later!
Art (Joyce's Dad)

Operation Complete .. Joyce did good

Joyce's Procedure has started

Hi Everyone,
Joyce got her day started about 3 a.m! She was up and ready to shower. We all were up and chatting by 4 a.m. Joyce was in good spirits, nervous but at the same time feeling calm. We all left the hotel and went on down to admissions by 6 a.m. She got checked in and some tearful hugs were exchanged.
She went into OR prep at 6:12am and then she got to spend a little time with Tony and her Mom, Jeanette. She was in good spirits and gave them the thumbs up as she went on to theoperating Room at 7:04.
They have just now actually started the procedure .. 8:35am. We are all in the surgical waiting room ..Tony, Joyce's Mom and Dad, Her brother Mark and Jessica, and Tony's dad Anthony. They have a couple of large electronic status boards in the waiting area on which they indicate the various stages of progression relative to the procedure. We will keep everyone informed as she progresses. Keep her in your prayers.
Art (Joyce's Dad)

Tomorrow is it!

Hi guys' it's Ashley. Tomorrow is the big day. It all feels as if this whole surgery is happening to someone else doesn't it? But while I'm home with my grandmother I will be sure to upgrade this blog everyday that my mom is in the hospital. So don't forget to write comments to us everyday(or as soon as possible) because we need to hear everyone's responses and comments. You guys' have been so kindhearted to us ever since the beginning. I'm sure I will be hearing a lot from all of you for the next few days. Oh, and did I forget to mention that on Sunday it is my mom's birthday that day. She will be turning 41. I know she doesn't look it but it's true. Hopefully she will be home by then.
Ashley

The Plan

I've been amazingly calm this weekend. (Aside from Friday night) I have no doubt it is thanks to the many prayers going up for me to be at peace with everything this weekend. Thank you to everyone for that. Tomorrow (Monday) I will take Ashley to school, get all the last minute things accomplished, and pack up the car. We will pick Ashley up from school at 3:30, go out to dinner, and say our goodbyes. Tony's mom will stay with Ashley while his dad and my parents and I head up to Philly. We will stay in a hotel Monday night. At this point I am scheduled for the OR at 6 AM Tuesday morning. (Think of me when your alarm goes off that morning.) I will find out for sure tomorrow afternoon. Dad has agreed to update the blog during the surgery, as that will be the easiest way to keep everyone informed. Thank you for your continued prayers. I'm anticipating tomorrow will be difficult, but I hope to hold on to this calmness. Love to everyone!
Joyce

It's Finally Real

Today was my last day of work. My mood all week has been so different from last week. (Really good mood, like nothing out of the ordinary is about to happen.) Today was busy, to say the least. I said my good byes to my students as each class came and gathered all their things from the AT room. They were bittersweet goodbyes, but no tears. (For those of you who have seen me year after year crying my eyes out on the bus platform saying goodbye to my kids on the last day of school, you can appreciate how odd it sounds for me to have no tears saying my goodbyes today.) I busily organized (or shoved things into nooks and crannies on bookshelves and in cupboards) and tended to last minute details. All day I've been saying to friends that it just seems like the surgery is happening to someone else. Even while Ashley and I were at the hospital yesterday for my preadmission paperwork and testing, it still seemed distant, like we were discussing someone else. Emotions got a little more overwhelming once all the kids left for the day, but no time to let that overwhelm me, I had more organizing to do and many things to load into my car before picking Ashley up from school. I met some very special friends at Ruby Tuesdays for drinks, and all still seemed amazingly calm inside of me. We laughed and chatted and I didn't think too much about anything out of the ordinary coming soon. Until the good byes . . . I could feel a sense of panic swelling up inside of me as each person hugged me and wished me well. It was the final goodbye in the parking lot that seemed to snap me to my senses. As Karen and I stood in the rain, I didn't want to say that final goodbye and get into my car. As soon as I did, I suddenly became very aware that this is all too real, and it's really happening to me. I cried the whole way home and for a good while after arriving. I'm okay now, but I have a hunch this weekend will be full of those reality moments. If saying goodbye to friends was so overwhelming, how will I walk away from Ashley Monday afternoon, and how will I walk away from family in the waiting room Tuesday morning. Those are the moments I've been dreading since January. I'll be so happy for Wednesday to get here!

To those of you at work, I can't bring myself to read the Kisses book yet, your notes are sure to touch me more deeply than I can handle at the moment, but the book is going to the hospital with me. I may have to save reading it for Wednesday :-)

Thank you, again, to everyone for all your love, inspirational words and prayers. You'll never know how much they help to carry me through the dark moments.
I love you all!
Joyce

Eight more days

There is eight more days left until the big surgery. I know all of the family is not ready for this day to come but it's got to be done. We do appreciate all the love and care you are giving us. We would really like you to keep getting in touch with us and have you write down your comments for next week. Please keep us in your prayers and I will let you know how my mom is when she is up at the hospital. Thank you.
Ashley

I've been approved!

Earlier this week I phoned Joanne at Dr. P's office and again asked if all the paperwork was submitted to the insurance company yet. (and again, she yelled at me for worrying.) Given the week I have had, I proceeded to snap back. This seems to be the only approach that breaks through her barriers and by the end of the conversation she was giving me the info I was needing. She had submitted all the paperwork along with 70 extra forms and documents (Univ. Hospital is out of network for my insurance and they need to prove medical necessity.) She hadn't heard anything back and thought that was a good sign. Thursday, I received a very nice message on my cell phone from her informing me that the insurance had approved my surgery and it's all a go. (I was relieved and elated at that news, but quickly panicked, as I realized we won't be postponing anything.) That's okay, since I don't think I can go through the weeks approaching surgery all over again. I will be going up for preadmission testing on Thursday, May 15th. I will get as many questions answered then concerning the surgery. (prep, hospital stay, visitation, etc . . .) Looks like it's really happening. I'll let everyone know what I find out on Thursday. Love to all!
Joyce

What a day...

Very few of you know this, but last Monday (April 28th) I had to have a repeat mammogram done. Tuesday, as I was driving to my dentist's office to have my teeth okayed for surgery, I got the dreaded call from Dr. Cooper telling me I needed the next available appointment for a biopsy. What an incredibly hollow feeling that produced. Dr. Barnett squeezed me in the next day and was wonderful at calming our fears. We wouldn't know the pathology until today.
Today arrived. What a day it has been. My position at work was RIFed due to budget cuts (I will have a regular classroom next year.) For any Banneker parents reading this, don't worry, the district has a plan for meeting the needs of gifted students in the elementary schools. It was a truely emotional day, as I have put my heart and soul into creating a gifted program to be proud of. I am very sad to give it up. But here is the good news - the pathology results were fine. (Thank you, God!) I cried many tears today, not just for my position, but more for feeling like too much is out of my control at the moment. (Any of you who know me well, know that I need to feel in control - okay, we'll say I'm a bit of a control freak.) With so many things feeling up in the air, it's quite overwhelming at the moment. Now, as I look back on the previous week, I can see that it's time to shake off the blues and focus on my blessings. I have a job, I don't have breast cancer, and I have a lot of people showing me so much care and support. My family and friends are my greatest blessings. Thank you to all of you for keeping me going. Tomorrow is another day and it's sure to be better!

One Step Closer

Today was the day I had to call Dr. Pochettino's secretary to schedule my preadmission testing. (She's quite the ray of sunshine.) Again, she refused to tell me when she would start the process of getting approval from the insurance. (Not sure what her deal is with that.) I did get scheduled for May 15th to have my tests done. The cardiac cath from four years ago showed what they needed to see, so no need to undergo that again. :-) It looks like my surgery will be at 6:00 AM on May 20th. We will be staying in the hotel on the 19th to avoid making the trek to Philly at 4 in the morning. It really hit me hard last night at 11:00. . . just two more weekends before the big weekend when all the parents arrive for this endeavor. Two weekends pass really quickly. (I'm getting nervous.)
Hope everyone is doing well. Please send prayers to Aunt Maureen and her family, and of course to Diane and her family as they continue through their difficult path. Mine seems pretty trivial compared to the journey they are having to take.
Love to all,
Joyce

Sharing the News

This was a big week for me. I have been hesitating to share the news of my surgery on a larger scale, mostly because I was afraid it would make the situation seem too real. I had planned on waiting until May to share the news, but decided to share it with the staff at work this week after several people asked me about my medical leave that was posted in the School Board Meeting Minutes. The well wishes and encouragement proved to be very uplifting and I'm glad it's in the open at work. Thank you to my wonderful colleagues for all your care and concern.

Again, at church yesterday, I shared the news and was amazed by the genuine concern and care I received. Ashley has been wanting me to share the news with our church family for months. I had shared it with a small number of people so we could be on the prayer chain, but didn't want to share it with the whole church until much closer to the surgery date. I didn't want to have the focus on my "far off" problem when there are so many people needing more immediate prayers. When it came time for prayer requests, Ashley grabbed my arm and pushed it into the air. I could see she was needing me to openly request prayers. The statement was simple, but difficult for me to say. "I'm having open heart surgery in a few weeks and my family and I could really use your prayers." The lump formed in my throat before I could get all the words out. Ashley looked so relieved when I had finished as she handed me a tissue. She needs prayers for the next few weeks as much as I do. Almost instantly, I was surrounded by amazing and caring people, all ready to welcome me to the "zipper club." In our small church congregation I met people who have had bipass surgery, heart valve surgery, aorta replacement surgery, and even heart transplant surgery. It was so encouraging to know that the procedures really are quite common and I'm far from alone in this journey. I was very moved, but not surprised, by the outpouring of love and support that I received from people who really don't know me very well. We have a very special church community - I am very blessed. Thank you to everyone at Felton United Methodist Church - and thank you to my wise daughter, Ashley.

We love all the Comments!

Wow, thank you so much for all the supportive notes! This will be such an inspiration for us to read and update. We are truely blessed to have such wonderful people praying for us. Love to all!
Joyce

Trouble adding comments

We have received some questions regarding people having difficulty adding comments. I think I fixed the problem. (Given my lack of computer wisdom, I could be wrong.) Try again and we will see what happens. Ashley and I are back to work this morning (first day back after Spring Break) Hope everyone has a wonderful week. (Thank you, Stephanie, for your sweet comments!)
Love to all,
Joyce

A Note From Ashley

Many of you may know that this is a hard thing to go through because you never know what the chances are of the person having surgery surviving or dying. I bet this situation is hard for my mom's parents and for her own family living with her right now. (Dad and I) So any of you out there with comments don't be afraid to share your opinions with us because if you wish luck for my mom that would mean everything to us.
The patient's loving daughter,
Ashley

My Heart History

When I was born I had several things wrong with my heart. I had a Patent Ductus Arteriosis that needed repaired at the age of 10 months. I continue to have aortic stenosis that has become more severe as I've aged. I also have a malformed aortic valve that is a variation of a bicuspid valve. (Your aortic valve is supposed to be a tricuspid valve having three leaflets that open and close to let blood flow through in one direction. A true bicuspid valve only has two leaflets. Mine has three leaflets, but two of them are fused together.) Because of this malformation, I have a moderate leakage back through the valve which is known as regurgitation. I had two cardiac caths done growing up, one at the age of 5 and one at the age of 15. I have a very loud murmur and have been monitored by cardiologists my whole life. Well, not exactly, as I failed to concern myself with cardiac care once I graduated from college. I had no idea that surgery was guaranteed someday, I probably would have been a little more concerned had I known. I had a fairly frank conversation with my pediatric cardiologist when I was about 16 years old. Asking all the pertinent questions, such as can I have a child someday, and are my conditions hereditary. He said I could have children, my conditions were not hereditary and the only thing I really needed to worry about was the build up of plaque due to cholesterol. (Concern for high cholesterol was new at that time, he had me scared to eat potatoes after that conversation - I remember him specifically naming potatoes and lots of butter as foods to avoid.) No mention of future surgery - so I went on to get married and have a baby, without any cardiac care for close to a decade. After I gave birth, the strain of a natural child birth (prolonged by back labor) jumpstarted the inevitable increase in a change of pressure within my heart, also referred to as the gradient. I wasn't feeling so well, and wasn't handling physical activities as well, so I decided to see a cardiologist. After a series of echos, she very bluntly informed me that my gradient has started it's increasing path and once this increase begins, it doesn't retreat. I would need surgery one day, but not until I am very old. Old or not, the prospect of surgery was terrifying. I tried to put it out of my head, as very old would be a long ways a way. I faithfully returned, with more complaints each year and cared less and less for this cardiologist with each visit. One visit, she was going to be out of the office, so I had to see one of her partners, Dr. Gurmeet (Gary) Singh. He was very concerned with my care and I've been with him ever since. Several years passed and I wanted to have another baby. I humored mom by asking Dr. Singh to okay me for childbirth. I was very surprised when he said no. He wanted me to have a
Trans-esophogeal Echo (TEE) before he would okay me for a pregnancy. During a TEE, you are asleep and they put a scope down your esophugus to do the echo internally. Not a pleasant experience, but worse was when I started to awake and heard all the commotion in the operating room. People were crowding around to see my "aortic shelf" on the monitor. No one would explain to me what it was at the time, but during my post office visit with Dr. Singh, he explained to Tony and I that I have a subaortic membrane that sits just below my aortic valve, which creates even more difficulty for my heart to pump blood through the valve. He explained that this is a very rare condition and no one in Delaware would be qualified to handle what to do about it. My feeling was that there was nothing to do about it. It had been there my whole life, it can just stay there. Surgery would wait until I'm very old, that had already been decided. I just wanted to know if I could have a baby. I was sent to Deborah in New Jersey where I was told there was something there, she doesn't know what it is, but don't worry about it, have a baby. (That was very strange to process) I went to University of PA and was told that I needed to deal with this immediately, but my insurance refused anything more than an office visit. Next, I was sent to Hopkins and was told that I didn't have a membrane, but I needed my valve replaced and he could do the ROSS procedure in three weeks, but first see the pediatric cardiologist for a second opinion. (At this point Tony and I were quite afraid, I just wanted to know if I could have a baby and now I was having to process the very scary idea of the ROSS procedure.) The pediatric cardiologist confirmed that there was a membrane but was 50/50 on doing the surgery at that point so he sent me to the head of their cardiology dept. We traveled back to Hopkins for a third visit with the department head, who told me there was no membrane and basically what I was feeling was not cardiac related. I was so mad, I can't remember if he said to have a baby or not, but by then there was no way Tony was agreeing to take that risk. Dr. Singh knew I was not seeing anymore doctors, so he did a cardiac cath to determine if the gradient (pressure change) occurred before the valve or across the valve. It occurred before the vavle, which confirmed the membrane was there. (I don't know that I was 100% conviced, but he was.) We decided to leave well enough alone and watch for symptoms. Again, I'm thinking surgery would be when I'm very old. God, apparently, has other plans. The past few years I've felt more and more sluggish with other symptoms creeping in. Last August, my gradient had jumped into the 60's so Dr. Singh wanted me to do another TEE. (Previously my gradient had been in the mid 30's and eventually the 40's. The jump to 60 happened in a very short period of time.) I agreed to do the TEE in November and the TEE showed what may be a second membrane. It also confirmed the gradient was in the 60's and I was told that I needed to do the surgery. I agreed to see the specialists at University of PA in January and have been on a rollercoaster ride ever since. (Between deciding on what type of valve to fighting with the insurance company, to facing my own mortality - it's been quite a journey already.) A wise man told me that I may look back on this year as the best year of my life - I already see the gifts in this experience, frightening as it is. I know the support of my family is a blessing, my faith is stronger, and my outlook on what truely matters in life is far more focused. I am better able to appreciate all the little moments with Tony and Ashley and I doubt I'll ever take those moments for granted again. Thank you Mark, for your wise words.

Introduction

This blog is initially being set up to keep everyone informed of the pre op and post op progress that I am making with my journey through open heart surgery. I'm hoping that this will be a fun way for everyone to stay connected to what Ashley, Tony and I are experiencing, as well as all the fantastic people that will be caring for me. (Thank you to my mom and dad, and to Tony's mom and dad for your commitment to helping us, and to everyone else that will be supporting us through prayers, visits, cards and/or phone calls.) Let's get started with some background for those of you who are unclear as to exactly what is going on with my ticker. . .