Monday, July 9, 2012

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!

Sunday, June 24, 2012

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.

Wednesday, June 6, 2012

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.

Thursday, May 17, 2012

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.

Sunday, April 29, 2012

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. 

Thursday, April 19, 2012

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!

Thursday, April 12, 2012

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!