Welcome to my day to day journal of having open heart surgery.

When I started this blog I was not sure if I would need surgery but after many tests and doctors visits I had valve replacement surgery on June 23, 2010. I was born with a congenital heart defect, a bicuspid aortic valve. My blog reads backwards (like all blogs)....not like a story in chronological order...so go all the way to the beginning (here) to read about my history and how this all got started.

Let me know you stopped by......leave me a comment :)

Wednesday, June 30, 2010

One week ago today.....

A week ago this time I was coming out of surgery and was in ICU.   I am now home and really doing very good today.  I think managing the pain has been hard.  I just hate the lightheaded and dizzy feeling I have on narcotics.  So after a few phone calls and a really bad few hours last night because of Lasix I changed my meds around and at this moment I have gotten down to just 3 regular strength Tylenol.  No more major pills for me unless things get bad again.  I am in pain but the trade off for getting back my concentration and no headache is worth it.    My incision does hurt alittle...mostly way deep inside.  I slept all night in bed last night...flat.  This is a huge accomplishment.  I cannot turn or move at all but at least I'm in bed and not in a recliner.  Baby steps  :)

I have to go get a chest x-ray on Friday and my follow up is on Tuesday.  My parents are going home tomorrow and will be back to take care of me on Tuesday.  Dan took Friday off and with monday being a holiday...it should all work out well.  I am really able to do so much more for myself....but there are moments (coughing, reaching) when I do need help.

I will post a few pictures tomorrow.....

Sunday, June 27, 2010

4 days Post Op

I am doing ok.  Dan just took this picture of me.  I am walking the halls now, not coughing as much and about to go home.....This very pretty pillow is from Mending Hearts.    So glad this part of this over.

Friday, June 25, 2010

Update 4

Robin is doing better.  It is possible that she may be released tomorrow (Saturday).  Not bad, open heart surgery and released 3 days later.  That still depends on her getting up and around.

They just removed 4 pacemaker wires that went from her heart to the outside of her stomach.  Wasn't pleasant but they are gone.  They removed the drainage tubes yesterday, luckily I wasn't there to witness this.  I hear it wasn't pleasant either.  I do think she feels a little less pain now that they are also out.
A little earlier they also removed the bandages over her scar.  It looks even better than I thought it would.  I think she will be surprised by how well her scar looks in about 5 or 6 months. 
Yesterday a little older lady from Mended Hearts brought Robin a nice custom made Heart Pillow for her.  The purpose of the pillow is to put it on her chest and hug it when she needs to cough.  She also talked about the meetings that they have at the hospital.  She also showed Robin her scar from her surgery, that was the first time I have seen perk up and look so happy, she asked the lady if she could come a little closer be cause it was so hard to see.  This is one of Robin's biggest concerns.

Wednesday, June 23, 2010

Update 3

Doctor came in and said everything went well.  Just had to replace the ascending aorta and her valve.

She will be asleep for the next 4-6 hours, they let her wake up slowly so they don't stress her heart.
The Doctor did say her valve was deformed badly.

Update 2

We have received a call from the Operating Room that Robin has been removed from the Heart/Lung machine and they are finishing up.  Hopefully the Doctor will be up in the next hour to let us know how things went.

Delay Update

The nurse came out around 9am and said they are going to do the surgery at 10am.  Robin seemed to be in pretty good spirits.  The surgeon came in and talked to us briefly.  He said he thought it was take about 4 hours or so.  So hopefully Robin will be done around 2pm or so.  The Dr. said we will be notified when she is removed from the heart/lung machine.

A Delay

Got to the hospital at 5:30 am and got checked in.  The nurse came to waiting room at 6 and said there are 2 emergencies and my surgery will be delayed.  She is unsure how long of a delay but may be up to 5 hours.  While we were checking in and young guy came in with oxygen and said he was here for a lung transplant.  That may be the emergency but we do not know.  I think I will be ok for 2 or 3 hours but I am already wanting some water.  We will see how it goes.  I just did not want everyone to think there was a problem when an update does not come till much much later tonight.

Tuesday, June 22, 2010

...the wait is almost over

Ok, today has gone by very fast.  My parents came down to spend the afternoon and evening with us.  My cousin and family stopped by for alittle while....so nice to see everyone.  I have said my goodbyes and shed a few tears.  I have a few pre op things to do, shower with special soap tonight and in the morning.  I have to finish packing my little bag of things I might need.  I have answered alot of emails and made some more phone calls......and I guess I am ready.  Still scared to death but I need to have it done and according to EVERY single person, I am going to feel so much better when it is all over.  So the next post will be from Dan....sometime tomorrow.....

Monday, June 21, 2010

...less than 48 hours to go......

ok...so here I am on Monday...less than 48 hours from surgery.  I would love to say I am feeling great and all is wonderful, but really that is not the case.  I am on this heart med, Amiodarone, and it gives me kinda a sick feel to my stomach.  Although, I do have times when it goes away.  I have to take this all the way up to the morning of surgery.  I also took one xanex yesterday in hopes to take the edge off.  Ok I don't think that is working at all.  I wanted to do something with the kids today...like the community pool or something but the heat is too much and I am so tired.  I woke up at 6am this morning and went back to take a "nap" at 10:30.  Back up at 12......this is just not good. 

My parents are coming tomorrow and my sister's flight is tomorrow evening.  I feel the waiting is too much.  I am going to get my little bag packed up this afternoon...I really don't think I need much.  We have worked out all the plans for the kids.  I guess I am just waiting........

Friday, June 18, 2010

Pre Op at Hospital today

Went this morning to do the preop.  It went fine...we were a little early (not too much traffic) so they got us in earlier.  Basically, went over consents and some paperwork, chest x-ray, bloodwork and an EKG.  All went fine.   Then we sat with a cardiac nurse...she went over everything...like no makeup , hair up in ponytail, clear fingernail polish, special soap to shower with and then she stuck this bright red bracelet on me.  I have to wear this till Wednesday!!!  Everyday!!   Annoying......

Then we went over the no driving, sternum care, lifting my arms....what I can and can't do.   We talked about A-Fib and meds.....and she answered questions about visitors, my kids coming to see me and how it works with Dan during the ICU.  I got all quesitons answered.

My surgery is scheduled for 7am,  We have to be there at 5:30 am.  That's pretty early when you also live 45 mins away. 

I walked out of the hospital wishing that today was the day....the waiting is really too much.  I'm ready to get it over with and start recovery.

Wednesday, June 16, 2010

6 days to go......

Today, June 16th, was my last day of work.  So hard to say goodbye to everyone.  They had a special lunch for me, said a prayer for me (thank you Lynette) and even had a cake and balloons.  So nice.  I am already missing everyone :(

I feel a little more nervous now that I am getting closer.  I cannot believe that this time next week, I will be in ICU waking up from open heart surgery.  Ugghhhhh......

Saturday, June 12, 2010

.....this week went by fast

I went and saw my Primary Care doctor on Tuesday.  She thinks my iron looks so much better.  I only have to take one pill a day now.  She said my Vit D is low so she want me to take some supplements.  She also got into how I am feeling, handling the idea of the upcoming surgery and such.  I told her I did not think I was depressed about it...just scared and sad.  I also told her I was worried that, especially the few days prior to surgery, I was concerned I would be more upset.  She gave me an RX for Xanex and told me to take it at night.  It would help with any out of control feelings I might have.  Well it's now Sat and I still have not even filled the RX.  I just hate pills.  I am concerned how they might make me feel.  I guess as I get closer, I might have a change of heart about them.  Especially if they will help me sleep.  Sleeping is so hard now.   I use to LOVE sleeping.....I could sleep till 11am on Saturdays if I was lucky enough to not have anything going on.....

Last full week of work this week.  Can you believe they are going to have lunch and a CAKE !! for me on Wednesday for my last day?   So sweet...everyone has been so amazing to me there...I guess I am just amazed because I have only been there 2 1/2 months. 

OK now on the the scar......I am getting better about the thought of it.  I am not so obsessed with worring about it as I was.  Everyone has their own opinion of it when we talk about it....well they are talking,  I am complaining.  Here is some of the very helpful advice I have heard this week:

"Well you could remain "perfect" and be buried or be alive with a small scar."
"You will get to purchase a brand new wardrobe"
"Just get a tattoo around it and no one will even notice the scar" (this one made me laugh)
"I think scars are sexy"
"It is not going to change who you are"
"After a few years.....it will hardly be noticeable"

So I am coming to terms with it....

-11 days to go
ps.  if you have something that might make me feel better about the scar....feel free to leave me a comment  :)

Monday, June 7, 2010

...about 2 1/2 weeks away

      This will be my last full week of work.  Next week I am only going to work 3 days.  This will give me time to get ready and spend sometime with the kids.  My sister is going to fly in from Texas the day before surgery.  I really think it is not necessary but if she was having major surgery, I would be right there too....I have a great family.
      I have an appt tomorrow with my primary care Dr.  She thinks my Vitamin D level is low now...but she thinks my Iron has improved.  Maybe she will say I can stop the Iron pills tomorrow.  
      I had a bad few moments yesterday.  I went out front to replant a few flowers and water everything.  I also started scrubbing out the birdbath. Tyler finished doing it for me.   It was like 90 degrees and very humid.  I guess it was too much for me....I felt ok until I had to climb the steps to get back into the house......so out of breath.....scary.  Those are the times that the doubt and wonder if I am doing the right thing vanish and I really believe I have a heart problem. 

Thursday, June 3, 2010

I guess we are counting down now...

So, I feel like I am coming to terms with what is about to happen to me.  I am not getting as upset so easily and I am able to talk about it better than before.  I have read more about what to expect during the recovery time and how it is going to be very hard at first but if I keep moving I will feel better faster.  I am going to try to keep that in the back of my mind. 

We have decided to go with the tissue valve.  It seems more natural and I do not have to be on Coumadin the rest of my life.  That feels like a scary drug that I really want to avoid.  I barely take advil right now....I am on no meds and I would like to keep them to a minimum.  I did catch, during the last appt with the surgeon, that I may need to go on a cholesterol med ( even those my last bloodwork showed my cholesterol was ok), baby aspirin and maybe a beta blocker.   I guess those will ward off any potential problems.  If I go into A-Fib during or after the surgery I may have to go on Coumadin for a month or two.  Lets hope not.

I got by new bloodwork results back and my iron levels improved a small amount....not much and they still are all saying "Low" but they are a little better.  I cannot say I like taking Iron...ugghhhh.  If you have ever taken Iron before, you know what I am talking about.