One Month Later

The J Team
Jim, Jimmy, Jane, & Joanie Dorsey
(This photo was at the two week mark.)

It's now July. Last week my recovery really turned a positive corner. Pain has greatly decreased. I can now be sitting and realize I don't feel any pain. Now that I made it to this step I feel like I can start looking at the future.

Saturday Jim and I went down to the beach for a walk and to get some dinner. We were walking down Seal Beach Pier and here I was, passing other people and not stopping to catch my breath. Wow! 

On our way to the end of the pier there was a young pelican hanging out with the fisherman, waiting for some dinner. I love pelicans. They look look so prehistoric. I just love watching them fly, dive into the water, or just up close and personal.

Walking back to Main Street we saw a beautiful, perfect sunset. Behind the glaring sun was the Downtown Long Beach skyline. Still feeling great walking along with no need to stop and check my pulse. 

On to Walt's Wharf for dinner. This was a dinner to celebrate! Celebrating my health and recovery. I haven't had King Crab legs in years. Jim convinced me to go for it. So good.


Life is good, very, very good. And it's only going to get better!

Role Reversal is a Bitch!

June 8, 2012 I temporarily gave up my job as Nurse, Wife, Mom, and Gramma. I returned to the role of CHD PATIENT! I arrived at the hospital at 5:30 am to check in for my Open Heart placement of a Plulmonary Valve. Pre-op went as smoothly. I did have to get another EKG as Hoag did not send it to St Joseph. Much better than having to redraw labs. After all was done Dr. Happy Drug gave me my Versed. My dad and mother-in-law came in to see me before they took me to the OR. Jim said we had a sweet conversation that I have no recollection of.

In my pre-op tour with the Nurse Practitionor, I told my biggest concern was waking up still intubated. She reassured me that if I did, ,they would remove it ASAP. I do remember it and using pleading eyes and my thumb to beg them to get it out. I remember them telling me to relax, not fight it, so I begged again. I don't know how long it was before they did, but so grateful when it was out.

Two weeks later my sister-in-law asked me if I remember seeing her after that. Not one bit. I only knew she was there because she signed my Heart pillow. When Jim told me she was there, I asked him to have her come to the foot of the bed so I could see her. I then whispered "Fix my bangs". She came over and fluffed my new short hair back into shape. I said "Thanks, it's a girl thing." I also kept asking someone to "get me a cocktail". I wanted was ice chips. I guess I was pretty funny. 

I also saw my Dad, mother-in-law, sister, niece, Jim and my friend Mike. I spoke to my son and daughter on the phone. I had an awesome nurse Paz that I have a very slight memory of. Pain medicine was my friend that first night.

I will be forever grateful to my friend Mike. We were best friends in nursing school 20 years ago. He became a CCU nurse. Several years ago he aorta disected and had emergancy surgery, nearly didn't make it. I couldn't have had a better person to have at my bedside when Jim could not be there.  Because of his experience as a nurse and a patient, he anticipated my every need. 

I would pass on to my nurses that I was also a nurse. It was never to say "hey, I'm a nurse, treat me special", but to let them know I understand the pain scale, the need for all those deep breathes, how accurated do you want this I&O, I know I have to get out of bed. Having nurses take care of me, I tried to be the kind of patient I would want to take care of. One who did not do too much or lay there like a lump, call light too much, follow instructions, not let the pain get out of control.

When I got home it was even more difficult letting others do things for me. BUT I did. I let Jim help me into bed, fluff my pillow, rub my back, get me things. I let my daughter-in-law clean for me even though I hate anyone having to clean up after me. She colored my hair and even painted my toenails. As a wife, mom and gramma I love doing things and making things for my family, but this time I let them do for me. Weird....

So far, my recovery is going really well, and I think it is because I am going along with this role reversal thing.

Thank you to the Internet!

When I was growing up, the only time I ever saw another kid with CHD was at my cardiology appointments. I certainly did not have anyone in my everyday life. I had my surgery when I was 16 and I was very alone in that aspect. My parents also did not have other parents to talk to. I don't think they ever sought others out either.

As a face surgery in less than 24 hours I am humbled by the love and support from the friends I have met in the online CHD community. Facebook, blogs, online support groups have all become a great source of information.

Also because of facebook, I reconnected with a sorority sister from college. I hadn't seen her in 35 years. Out of all my friends and relatives, she was one of three who has my she blood type. She took time to go donate blood for my surgery.

Today I got the last of my pre-op tests done. Tomorrow I will go see my dad, pack my bag, clean my house and try not to think about Friday. I will let everyone else worry about it.

And when I have recovered, I will RUN around with these kids.

Xavier, Jane, & Jimmy, the center of my heart.

The Date is Set

June 8th. That is the date that has been picked for my surgery. I hope all the doctors can coordinate and the authorizations all happen in the next 22 days. I know things can change and be postponed, so I left room in my head for this to happen. 


Yesterday I met with my Surgeon, Dr. Richard Gates. His specialty is Adult Congenital Heart Surgery. I feel completely comfortable with him. I think he was the easiest surgeon to talk to that I have ever met. I found the most surgeons aren't always "people persons."

So, this is an Edward's Tissue Valve. I don't know if this is the exact make and model, but you get the idea. A couple of great things about this type of valve. I won't need to be on anticoagulants, such as coumadin, longterm. Just aspirin, that wonderful, ancient drug, for 3-6 months. Also, when I need a new valve, as this one is expected to last 10-15 years, I will be able to have a percutaneous valve. I can just imagine how much they will advance in those years.




Next week I go to the hospital to meet with the Nurse Coordinator for the Adult Congenital Program. I get the grand tour and information about my surgery. I will find out everything I want or need to know about my hospital stay and recovery. 


Please feel free to leave ideas for questions I might need to ask in the comment section.

How Amazing is the Human Body?

On the 17th I had my Heart Cath. I remember my doctor coming to see me in recovery and telling me that he did not need to place a stent where my original Blalock-Taussig Shunt. There was no narrowing! I remember him telling me that the area that my Pulmonary Valve should be expanded too much for me to be able to receive a Melody Valve. We had hoped it might be an option because the procedure is much less invasive. I remember that he said something about other vessels, and he did "something" and "something" else. Hmmmmm. Versed. A wonderful drug. Just don't expect to remember everything after a surgery.

That evening, right before discharge, I noticed my back hurt pretty bad. I figured it was from laying on the not so comfy OR table with my arms above my head. The next day I thought it might be muscle pain from laying flat on my back but lifting my head up so I could talk to Jim and Mike. The next day after that I noticed it was more between my left shoulder blade and my spine. Did I call the doctor? Of course not. Being a good nurse I knew my pulse and blood pressure were good, I wasn't short of breath, my nails were pink, so it wasn't my heart.

Over the weekend it really wasn't much better so I reached out to fellow CHDers who both were Cardiac RNs. I have the right friends! Liz said it sounded like ablation pain. I don't remember the doc saying anything about ablation, but sure that makes sense, sort of. Mike said he thought the doctor said something about collateral circulation and it may have to do with that. Maybe that's what the doctor said. Sure, why not.

I could feel two, and sometimes, three distinct spots that it felt like the origin of the pain. I tried to explain it to the doctor on call. Of course it wasn't be my doctor that did the procedure. I reassured him that I was not in cardiac distress and my vitals were good. I didn't need to go to the ER. It was just pain. He suggested I take a boat load of ibuprofen and to call if no improvement. The higher dose did help.

In the morning I got a call from my doctor's office and to come see him the next day. When I saw him, he listened, checked everything. I asked him to explain the things from the heart cath to me again since I wasn't on any good drugs. When he got to the part about the coils he placed in the collateral vessels coming off my aorta I said "WHOA, that's the part I missed." So he got out his pen and drew on the examine table paper where these  vessels were and the coils he placed. He then explained that my body had grown these vessels from my aorta to my left lung. My body was compensating to get more blood to my lungs. He assured me that I will have adequate blood flow to my lungs for right now without them. He said they do this to prevent bleeding during Open Hear Surgery. These collateral vessels have a tendency to cause a lot of bleeding.

I told him that I had massive bleeding problem in my second surgery when I was 16. He looked and me and smiled. He said "Well, you were a pioneer." In 15 years my body had grown these vessels to compensate for my less than perfect heart. These vessels gave me more oxygen so I could function normal as I could. They served me well, but they also almost did me in.

He placed his hand on my back and said this is about were these vessels would be. It was the exact locations of the pain. I am amazed by two things. One, that the body has this incredible capacity to do this. I picture a meeting of the vital organs, someone comes up with the great idea of "Let's grow some vessels from the aorta to the lung and get her some more O2 going on in here." Two, that I am in the hands of such an incredible doctor that did something to prevent a possible complication of my upcoming surgery. 

And the Verdict Is.....

A New Zipper or Open Heart Surgery. I am not a candidate for a Melody Valve. The area that one would be placed dilated well beyond the 28mm maximum for the Melody. So, my option is an Edwards Tissue Valve. Next week I will call to make an appointment with the Cardiac Surgeon.

A zipper certainly would make this easier!

During the Cath, my doctor had planned to place a stent in the area of my original Blalock-Taussig shunt. He had found in the past, that the area usually narrows over time and mine was 55 years ago. He found no narrowing at all! That was the good news! He also found that I also don't really have a functional pulmonary valve at all. No wonder I get short of breath with any kind of activity.

The thought of a major open heart surgery is frightening, just because I have done it before. It is something I never imagined I would need again. After all, back then I thought I was "fixed".

I know I have an incredible new life ahead of me after this surgery. My mission with my new life is the bring awareness to all CHD patients that they need this very specialized care. I will also make sure my former cardiologist learns about my new, fantastic, healthily life with NO thanks to him!

Today is for Abby

This very beautiful girl, Abby, was born with the same heart defect as I was, Tetralogy of Fallot. You can read her story HERE. Monday she was listed for a heart transplant. Her family got "THE" call this morning! She should have her new heart this afternoon.

I found her on facebook a year and a half ago. Her wonderful mom, Nicole, set up a facebook page Abby's Perfect Broken Heart, before she had open heart surgery. I instantly found my heart bonded to hers. She did remind me of Little Joanie, only more outgoing as she faces life. She acts and sings. She is the big sister to five (yes 5!) little brothers.

I made her the quilt in this picture. It was I way I could give her my love and to hug her everyday.  Please keep her in your thoughts and prayers today. Also, please think and pray for the family that gave her the most precious gift of all. Like her facebook page and give her your good wishes. Go to fb link

I can't even be bothered, be nervous, or worried about my upcoming surgery when I have this incredible girl to inspire me everyday. I love you Abby! I am going to come see you after I have my surgery and we will be able to RUN together!

Now It's Real

I just scheduled my Heart Cath. Now it's real. It's not something I'm just talking about. I'm really moving forward with the plan. So on April 17th I will know which surgery I am facing.


This feels so different from when I got my AICD. That all happened quickly and no time to think. 


Now there is a date with two weeks to think about it. I never faced a heart cath without my Mom by my side. My mom, who drove me to every single cardiologist appointment my first 20 years. She rented a cabin so I could go to my 6th grade camp when the school wouldn't let me go. My mom, who stayed in a crappy motel for two weeks when I had my Open Heart Surgery. The list is long, but you get the idea.




Don't get me wrong. My family and friends are wonderful and supportive. I know they will be there and do anything I need. 




But right now, I want my Momma.

Billie Jean Carter Gier 9/5/30 - 5/24/02

Still a Maybe for the Melody

I had my appointment with Dr. Berdjis last Wednesday. I had an echo done when I got there and then Dr. Berdjis and I talked about what it showed. I definitely have significant pulmonary valve regurgitation. The shape of my pulmonary valve still puts me in the running for the Melody valve. If you look at his drawing on the bottom right, the lower part appears to measure 30mm but does narrow to 15mm. 30 is too big for the Melody. Depending on what is found during the Heart Cath of how much the narrow part can be dilated will determine if it can be used. Also during the Heart Cath, Dr. Berdjis will put in a stent at the site of my original Blalock shunt. That can be seen on the upper left of the heart. 


If Dr. Berdjis feels the Melody Valve can be done, it won't be done at this time. We will have to get an authorization from the insurance company. Even though it is less invasive, less risk, less cost, it is not a "labeled" use for it. The insurance company may declare it "an experimental, off label procedure". We will then proceed with letter writing asking for approval to do this procedure. This may take up to two months.


If the Melody Valve is not possible I will be facing Open Heart Surgery. Something I never imagined I would ever need again. I do not look forward to having my chest cracked again, but given the possibilities for my overall heart function improvement, I won't hesitate to do it if that if it is the option given to me.


So now we wait until the Heart Cath is scheduled in the next couple of weeks. It will be a short stay, 23 hours at the most.


This explains a Cardiac Catheterization (Heart Cath) http://en.wikipedia.org/wiki/Cardiac_catheterization

Tomorrow

Tomorrow, I will have my Echocardiogram. Tomorrow, I hope to find out which surgery I am facing. The less invasive Melody Valve. Here is some information on the procedure. http://www.medtronic.com/melody/procedure.html


Or, option 2, Open Heart Surgery. For you that love to watch surgery, here you go. Warning, it does show cutting, stitching, blood, no guts, because it is a heart .http://www.youtube.com/watch?v=i9jrNh2wFzE&feature=youtu.be


I'm sure you can imagine which I would prefer. I am prepared to go either way. The thought of going hiking, which is something I had never done, is so very exciting. As is excited as I am about that, I think being able to carry my 20 pound grandson Jimmy up the stairs will be even better.


So, until tomorrow....

New Start Today for the New Future

Since I am facing Heart Surgery in the next couple of months, I'm going focus on eating healthy, cleaning out the clutter in my mind and house, and letting go of some baggage.

So, here I sit sipping my Green Tea without sugar, enjoying the smell coming from the oven where tomatoes, red sweet peppers, carrots, onions, and garlic are roasting, thinking about my future. The veggies will be soup for dinner.


Diet wise, I going to start with NO white sugar, flour, and rice. Timing to start this could be excellent as Jim is going to Vegas for 4 days. I can clean out the frig and the pantry, hit up Sprouts, Trader Joe's and the Farmer's Market. I also warned my friends on facebook the may be getting goody baskets because I can't give up baking.

Clutter, actual physical clutter is my biggest and most annoying vice. Something I have attempted to give up for my entire adult life. I have stupid, sentimental attachments to too many things. I now have such an exciting future ahead of me I need to really to be free of it. Peter Walsh, I need you!


Then there is the mental clutter. I am going to give up getting caught up in all those stupid facebook debates. My husband and my son get caught up in some dozy back and forth posts. When someone posts things that aren't true I will resist the urge to educate. I admit I get so irritated when people disrespect our President, and I try not to respond. So, if you post something that involves politics or religion and I don't "like" it, it probably means I literally don't like it. ;p (winking, sticking out my tongue).


Baggage. Letting go of those things from the past that just weigh on my mind and heart. There is one relationship in my life that is not what I want it to be. I've tried, but it just doesn't work. I'm giving my self permission to let go. I have plenty of people that want to be in my life and I am no longer going to worry about someone who doesn't.

Back to Work After the "Event"

Memorial Day Weekend 2008, spent at one of the most expensive Newport Beach Resorts, Hoag Hospital. That's the joke my husband likes to tell. I had to wait until Tuesday to get my AICD. They weren't going to call in a team on a holiday weekend. Not really a fun vacation, and then 8 weeks off of work to recover.


I was anxious to get back to work. but it wasn't easy. I couldn't help lift patients with my left arm and I just plain ran out of gas before the end of the day. I could feel the AICD pacing my heart. I told my cardiologist this, he couldn't believe I could be that aware of my heart. When I went to the Pacer Clinic it did show that I was being paced 60% of the time. Don't tell me I don't know What I feel!


Work just keep wiping me out. I would be useless the day after I worked. I would tell my cardiologist about this and his reply was "Maybe you should stop working, if you are able to". My manager was great, even offering me 4 hour shifts. It just wasn't fair to my coworkers for me to work at a slower pace. The 4 hours shift never worked either. I was always leaving at least 3 patients still getting treatment to my coworkers. I could see it in their eyes. I imagined the things they were thinking and saying. I tried to make it for 10 months. So I had a talk with my manager and told her I just couldn't do it anymore. It wasn't fair to the unit.


While at work one day I had a chance meeting with wonderful doctor who happened to be an ACHD Cardilogist! I really wanted to be evaluated by him, but he was not in my insurance plan. We did toy with the idea of paying out of pocket for the consultation, but never did. I could kick myself now! I kept telling my doctor how I was feeling and tells me things like "You're fine","You are one of the healthiest people I've seen today."


Jim tried to make it seem wonderful. Like I was "retiring". Inside, I felt like a quitter. After a year of so called retirement, I found a part time paperwork nursing job. I am so grateful to have found the job I have. Not quite as fulfilling as patient care., but I at least I am working as a "nurse" and earning some money to go see my grandbabies.


Last week I finally saw a ACHD Cardiologist. Because of that visit I have a new job. Not literally, but a new focus. It involves surgery, a new pulmonary valve, and a future that will involve RUNNING with grandbabies!


These grandbabies!

Jimmy

Xavier

Jane

Will

When the New Heart Adventure Started

I had originally created this blog to reflect on my life with a congenital heart defect. Life took a few bad turns and the focus went elsewhere. Now back to the business of the heart.

My cardiac life was going pretty smoothly five to six years ago. I did have occasional arrhythmias, but nothing that lasted for any significant amount of time. I had just discovered ACHA, the Adult Congenital Heart Association. On their website I learned about the new specialty of ACHD Cardiologist. I have been seeing a highly respected Adult Cardiologist, a "regular" cardiologist. I would question him on in regards to my special needs of care and he would reassure me he has experience with adults with CHD.


I did order a book from ACHA about complications of Tetralogy of Fallot post surgical correction. I read that Sudden Cardiac Death is the most common serious complication. Any complication that includes the word "death" seems pretty serious. Next was arrhythmias.


I am very thankful I only experienced the second most common complication. Because of this newfound knowledge I knew I was in trouble that evening in May of '08. Out of the blue, my heart rate went soaring to 180-200. I came inside, sat down, tried a few Valsalva maneuvers (holding your breath and bearing down) with no improvement. Jim, my hubby, just got out of the shower and I told him "I think we need to call the paramedics." He was so fantastic and calm. Long story shortened, ninety minutes later I was cardioverted with 100 joules, while conscious, into wonderful sinus rhythm. A few day later I became a proud owner of an AICD (automated implantable cardioverter-defibrillator). This was the weekend my heart life changed.