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 :)

Tuesday, October 12, 2010

3 1/2 months Post Op

Life after open heart surgery has really gotten back to normal.  I only have a few times a week that I am reminded of even having surgery.  I still will get tenderness at my incision, a mild pain if I turn a certain way and it will get stiff if I sleep in the wrong positon too long. 

I go to Cardiac Rehab three times a week.  I find I can do more and it is a good feeling.  I still am not a exercise lover....but I can tell it is helping.  After exercising last week, my heart monitor (you have one placed on you the entire time you are there) showed 4 PVC's in a row.  This apparently is a problem.  I do remember not feeling that great after exercising but I was done and ready to go and did not mention it to anyone.  Well, it seems they need and want to know everything, so I promised to mention any weird feelings in the future.  I know it have happened since then.  I get this strange "aware" feeling and I have strong heartbeats out of the blue.  I think they may be PVC's.  My cardiologist was called and now I have to go in and see her in the next few weeks just to do a redo EKG with her.  This is not something I am to concerned about. 
Life is busy with kid related things....football games, homecoming dances and all county choir practices.
We are going on a trip to Las Vegas very soon and I am very excited about that.  Life is back to normal  :)

Wednesday, September 15, 2010

12 weeks

Ok, so today I am 12 weeks post op.....and I feel really good.  There are times now that I completely forget about my incision and feel 100% like I did 4 months before surgery.  I do sometimes feel a twinge of pain if I turn wrong and in the evenings after cardiac rehab I will get a stiff feeling after sitting awhile in a chair...like I need to stretch that area alittle before it becomes comfortable again.  I do still feel very out of breath coming up long flights of stairs....especially if I am carry alot  but I am hoping that will get better.  Not really sure what that is all about.  My heart seems to be working so well.  I will have one PVC here and there.  I only notice if I am quiet and laying down.  My hair is falling out.....this started about 3 weeks go and has not become any better yet.  I really would say I have lost 1/3 of my hair if not more.  I use to have very very thick hair....even my ponytails looked thick....no more.  I read online about it being caused from the anesthesia and the shock to your body of the heart lung machine and so on....but really if I had not started out with so much hair, I would be frantic. Hopefully it will level off soon :(    I am now completely off all pain meds, day and night.  The weather outside is still pretty muggy and humid but we did have some nice cool days and Dan and I went to Great Falls and walked around.  I feel like I did great.  Maybe walked around 4 miles...maybe more.  We actually did 2 walks and here are some pretty pictures of our day....the falls are so pretty.

My little blog is getting some attention on Google searches now .....which means more than just family and friends are reading my posts.  I am so happy for that....because not only did I do this for my family and friends, I also wanted to help alleviate some fears and hopefully answer some questions for people who may be facing this surgery in their futures.  I gained so much knowledge from other's blogs and forum posts that I hoped one day this little blog might help someone else  :)  If you have any questions please either comment me with them or send me an note.

Wednesday, August 25, 2010

9 weeks post op

I am doing very well.  I did have a small bout of high blood pressure....went to 160/106.  It was discovered at my first day of Cardiac Rehab.  I also had gone to the beach for a week with my family and came home with a 10 pound gain of fluid.  So the nurse at Rehab wanted me to see my cardiologist soon. So when  I went in for my scheduled echo, I also saw my cardiologist's nurse.  She thought the pressure was too high and they saw some fluid behind my heart during the echo.  So, she sent me over for a CT at 2:30 the same day.  To make a long story short...the fluid was not too bad to make anyone worry and she put me on a BP med.  I started feeling better quickly.  I also had this strange pressure issue under my rib cage...but this all must have been connected with the fluid and the high BP.  My BP is now back to 120/80's (I usually was 120/70)....and feeling just fine now.

I am going to Rehab 3 times a week....every Mon, Wed and Fri.  I am not really the type that loves exercise but I am doing it.

My heart seems to be working great.  I do sometimes have some hard beats (maybe a PVC) when I lie down.  I do still have trouble going up alot of steps...but it is getting better.  I feel I am much better now than I was before surgery.  My incision area is doing ok.  Still pretty red and ugly but I am just wearing my tops and trying not to think about where and how much the scar is sticking out.  I started using Vitamin E but I see no change...I actually think it making it more sensitive to touch.....the last thing I want cause I still cannot even stand to wear my pre-surgery bras.  I am going to go get some Merderma and try that next.

My very bizarre news is that I was laid off of work.  I was actually going back a week early to help them out but I was let go.  I think I am still in shock over it.  After talking to a few coworkers, it seemed ALOT had changed in the 2 months I was gone, a coworker was fired  and maybe after hearing some of it, I may have been saved from alot of drama and stress.  So now I am looking around for something new.  It is a really bad economy out there......bad things happening to nice people  :(

To put a positive spin on this, I am enjoying the fact that I am home with the kids a few weeks before they return to school.  I am able to get my twins to their football practices (freshmen ball).  And I will actually get to see them play....their games are at 5:30 on Wednesdays.  I am able to recover at a slower rate and not push myself to hard.  Rehab can be exhausting and I am now kinda glad I am not trying to do that after working 8 hours....honestly not sure I could have the first week.  My oldest finally got his learners permit and I have had time to drive with him around the local High school parking lot. 

So there is my little update....all in all I am doing just fine.

Monday, August 9, 2010

6 weeks post op

      Well it has been alittle over 6 weeks since my surgery and I have to say I am doing very well.  I guess I thought things would be much worse but really I am getting back to normal.  I feel good 90% of the time.  I do have moments that I am overly tired, frustrated at things that still hurt and out of breath going up steps.  I guess as time goes by, I will see small improvements.  I did drive today for the first time.  It went fine.  The seatbelt is uncomfotable but I will bring alittle small something to place between me and it tomorrow.  The heart pillow from hospital is alittle large :) 
     Tomorrow, I go to see the nurse for Cardic Rehab.  I am going to go to a hospital closer to my work since I have to continue this for 12 weeks.  I hope I like it.  They want me to go for one hour, every Monday, Wednesday and Friday for 12 weeks. 
      Next thing I have to do is an Echo.  It is scheduled for Wednesday.  They want to get a baseline for any future echos for comparison.  I just hope he is soft with me and does not jab that wand to hard.  Echos are not an easy test.  I am also concerned about the flipping from side to side.  I just recently laid on my right side for about an hour.  NOT a comfortable position....but I am trying to work on it.  Left side is not so bad....I am actually back to sleeping on that side.
     I also am going to start back to work earlier than I originally thought I would.  I decided to go back next week part time for 4 1/2 hours ...but just 3 days, Monday, Wed and Friday.  Kinda ease back into the swing of it all.  I miss work and I am looking forward to going back.  I just hope things are like they were when I left.  Alot can change in 2 months. 
      Incision and drain holes are getting better and better.  Spent some time in the sun and found a medium size bandage the perfect thing to shield the top part of my scar from the sun.  They say not to expose it to sunlight for full year.  So now I have a silly tan line on chest.....but it's ok.  My drain holes have completly closed !  Never thought it would happen....they both are still a deep dark red but they are dry and closed...wooohooo.
       SO there is my 6 week update.  All in all I am doing fine  :)

Monday, July 26, 2010

Scar -One month Post Op

So here is my scar and drain holes 1 month post op.  I am happy at how low it is....but I still have alot of swelling at the top and I cannot wait to start using Vitamin B on it to start the fading process.  For those of you coming to my blog prior to your surgeries....here is something I was not aware of.  You may have one, two or three drain holes from surgery.  Mine were left open, not stitched, to allow them to heal from the inside out.  They are starting to look better now.

Wednesday, July 21, 2010

4 Weeks Post Op

So, four weeks have gone by.  Pretty amazing really.  I feel almost like myself again.  There are a few things that are still hard to do and I can tell when I did to much and need to rest. I also think goin up stairs is hard. But really I am amazed that I just had open heart surgery 4 weeks ago and I feel like this  :)

My incision is looking good.  Healing very nicely.  My drain holes are getting better and seem to be closing somewhat.  I think I finally got all the adhesive off me....honestly there was sooo much tape put on me.....ridiculous.  I kept finding more and more. 

I am only taking my pain med at night now.  My breathing is much better and I feel like I can take full breaths without much discomfort.  

I had my cardiology appt on Monday.  Went very well.  I have lost 8 pounds since seeing them prior to surgery.  She thought everything looked good.  She does not think I need to start a beta blocker YEAH!  So just an Aspirin a day right now.  My heart rate was 89 but she said that is a normal response to heart surgery and it takes time for the heart to heal and return to normal.  If it is still high at my 6 month (JAN 2011) appt she will rethink the beta blocker.  I have to go for an Echo in 3 weeks to get a baseline reading of my new valve.  I read on someone else's blog that getting that first echo was really painful because they have to push so hard with the wand and they make you turn on both sides.  She warned to take pain meds prior to that visit.....so I am doing just that.  My doctor also thought it would be fine to start driving in 6 weeks.  

The worst thing that happened to me this week was SNEEZING.  It has now happened 5 times to me and OH MY GOSH....it is the worse pain ever!!!!   I do not even know what is making me sneeze.  But I can feel it almost an hour later. 

But really, all in all, I am doing good.  Dan is keeping me up and busy.  We are shopping. I went out to dinner twice.  We even went to Lake Anna and I sat in the sun for a few hours (admittedly there where some rough points....and the steps almost killed me to get back to the car) but I loved it....even had a little picnic lunch on the beach.  We are planning to walk the mall on Sat morning.  So I really am up and about and doing lots.   I think I would be doing even more if we were not in a never ending heat wave.  Really I think it is 95 to 100 each day here. 

Wednesday, July 14, 2010

3 weeks since surgery

Today, July 14th, has been 3 weeks from surgery.  I have to admit I have good days and bad days.  I am able to do almost everything for myself now such as showers, washing hair, getting in and out of chairs and bed.  I can walk up and down stairs easily now....although up I still get out of breath.  I can ride in the front seat with my pillow across my chest under seat belt. Laughing, the more I list the more I sound like I am 3 years old......I guess when they cut you open like this everything is something I had to learn how to do again.   I am only taking vicodin at night.  I still have pain and discomfort during the day....but if I try not to do to much it is tolerable.  My incision is all but healed.  It is looking pretty good.  My drain holes (something I was not really that aware I would have or talked about on this blog) are not doing to great.  Kinda 2 open wounds right below my incision that were not stitched up.  I was told they would heal from the inside out......well they are gross and it is taking quite a long time to heal.  I have to admit I am getting tired of not feeling like myself.  Maybe one more week. 

I have a cardiologist appt on monday.  I want them to explain my fast heart beat.  My rate is close to 100 all the time.  Before surgery it was 60-70.  I hope this is a normal thing and not a problem.  The surgeon's office did not seem concerned.  I will post how the appt goes.

So thats where I am right now.  All and all I am doing well and each day things get a little better :)

Thursday, July 8, 2010

2 weeks post op

I am doing pretty well.  Each day is a little easier.  I have posted a pic of my scar.  I am happy it is low and it is healing very well.  I am sleeping better and able to get out of bed alone....a very big accomplishment.  My pain is under control too.  I am able to go 5 to 8 hours between pills.  I was able to stand in shower and wash my own hair yesterday.  Things are improving.  I am thankful that the hardest parts are behind me and I just need to concentrate on getting back to me. 

Sunday, July 4, 2010

Happy 4th of July

I was released from the hospital yesterday.  I came home and rested.  I woke up this morning feeling very good.  The twins were coming at noon so I decided to wash and blow dry my hair (huge accomplishment when you can't lift anything or bend arms very well) and get dressed in normal clothes.  They were so happy to see me looking so normal.  I did take a long nap in afternoon but we planned to take boys to fireworks tonight.  We decided to try Quantico.  I have to admit I was very concerned about having to walk a long distance or uphill in woods or something because we were headed to a lake on base.  We had my handicap placard and we hoped that would get me closer to the lake.  It all worked out just perfect.  The handicap parking area was right next to the front.  We literally walked 25 steps and picked a spot for our chairs.  The boys ran off to find some fair food for dinner.  There was a live band and tons of people.  The fireworks were great and I am so glad I went.  The boys had a fun time too.  Pretty good for 11 days post op.

Friday, July 2, 2010

I am back in the hospital

Last night, after dinner and my parents went home, I started coughing and air kept bubbling up. Making me cough and nausea. I was very bad. We called surgeons office
And she gave us a choice of coming in to an emergency room
Or trying to wait it out and see how it goes. Well. I could not stop the bubbles or coughing. So dan decided to take me to stafford hospital. **** a bad choice****. We were transfer by ambulance to fairfax. I got here around 4 am. Had another chest ct and a chest xray. Also did a abdominal ct. No word yet but they are ruling out and infection in the fluid buildup on my sternum

2 surgeons came in and after reviewing the tests they do see fluid around the aorta and poss elsewhere( I will clarify that). They want me to have another chest ct with contrast this time to rule out infection. Neither seemed to concerned and I feel so much better. A little morphine and antibiotic drips have done wonders! So they are keeping me another night. I am sure they will let me go in the morning unless the test shows something worse.

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.

Saturday, May 29, 2010

My Surgery Date is set for June 23rd

Well, I think wednesday may have been worse than I imagined it might go.  I mean I was pretty ready to hear I needed surgery and I did not have any coronary blockages so I was expecting to be told I could have minimally invasive surgery.  Ummmm, NO.  I seem to have 2 poss 3 problems.  I have to have the aortic valve replaced but I also have to have a portion of my asending aorta replaced.  It is dilated to 4.5 which is the point where it is considered severe.  He is also going to look at the aortic root and if he feels, while in there, it needs replacing....he will do that too.  SO now I have to have the long scar right down the front of me.  It is upsetting me sooo much.

I have told work.....they are being very sweet with me.  They are hiring a temp to help till I return.  I have decided that Wednesday the 16th will be my last day.  I have to do my pre-op at the hospital on Friday, June 18th.  So that will give me some time with the kids and to get things in order before this all happens.  I was given two rx's to take....one to prevent A-Fib after the surgery  and one to prevent bacteria (a gel for my nose)  I'll let you know how that goes. 

I guess I am not taking it all to well right now.  I seem to easily get upset.  That might be normal but I seem to cry way to easily right now.  Phone calls are hard...not only do I run out of breath talking but I get upset having everyone tell me they are thinking of me......but I do appreciate all the sweet phone calls and well wishes.   I might resort to texting   :)

So that's where we are right now.......

Monday, May 24, 2010

Chest CT...maybe the last test?

This morning I went for my Chest CT.  The easiest and less evasive test so far.   I did not even have to get undressed.  I think my chest xray had shown some enlargement, so the surgeon wanted a better look.  I hop the results are there in time for my appt with the surgeon on Wed.   I feel like the final decision will be made on Wednesday.  

As far as how I feel, not great.  Out of breath even if I do the simplest things.  This morning I woke up in a bad position...on my side.  I felt alot pressure and rapid breathing when I woke up.  Actually I think it woke me up. 

Friday, May 21, 2010

48 hours after my Cath

I took today off from work too.  I am so glad I did.   I am very sore.  Not only my right leg but my neck and back,  I must have tensed up or something during it cause all my muscles are feeling worn out.  I also have been peeing like crazy.  Honestly, it is 12 noon and I have already peed 6 times ...SIX......and it is time for me to take the pressure bandage off.  I am concerned but I think it will go ok.  Then I am going to shower and try to feel more normal.  I have had alot of PVC's this morning and alittle fluttering but I really think I feel better when I get more sleep.  I have had alot of sleep in the last 3 days. 

Wednesday, May 19, 2010

My Cardiac Catheterization

No food or drink after midnight last night.  I woke up before my alarm because of a racing heart and just could not sleep well.  We have to be at the hospital at 10am and my procedure is at 12.  We got there, filled out some paperwork and sat in waiting room.  Dan was able to go back with me for the first 2 hours.  They put an IV in and went through a mini history.  A nurse explained everything and then we just waited....a long time.   Then my doctor came in, not the new young doctor, but my doctor form years past.  He did not even know who I was.  My history....or anything.  I am sorry but we put our lives in these peoples hands and I would think he could have taken a moment out of his morning to open my chart and see what was going on with me.  But at the time I was to nervous and all these thoughts are in hindsight.....at the time I just wanted everything to get started.

The operating room was sooo cold.  They actually have this kinda of blow up mattress on the bed that is blowing warm air up on you.  I got very scared and started cry and they started my sedation.  I think it was a combination of them saying " We hate to see someone your age coming in for this test and then the nurse asking about my children"   I cry so easily anyway.  So they give you something thru the IV in your arm and you do stay semi awake during this.   I remember hearing them talking....there was music on.....and then comes the Dye.  Wow when they say it is hot, they are not kidding.   They place the catheter into your upper thigh and inject the dye and you can feel it going all though your body.  It was uncomfortable.....but nothing hurt.   I guess I was in there for 2 hours.   I did really feel when they pulled the catheter back out of my leg.  But it was quick.

When it was all over that same doctor from earlier came over to me and said I have good news for you "you do not need surgery"   I asked why do I feel so bad and what is wrong then?   He said it may be because I am out of shape!  Ok yes, I am a big girl.  I am 6 foot tall and I could lose 50+ pounds but that did not all come about a month and half ago......It upset me so much that he was dismissing everything.....Just not a good doctor....because after speaking to a few more people after this....We all decided he had no idea what was going on with me and remember how he did not even know I was a patient from his practice.   He must be what people would refer to as a textbook (he may be in his 70's) doctor.  He is basing his very bold statement on the fact that my valve is 1.1 cm instead of less than .09.   We are talking about 2/10th of a cm difference.   Am I the only one who finds this crazy?  So am I just going to walk around like this and wait till I faint or worse?   I have every symptom they list for this issue except I have not fainted.    Ugghhhh.....

Ok, back to the procedure.   Once I went back to my room...Dan came in and I was able to talk and such.   I could not move the right leg at all and I had to lay still for 3 hours....that was going to be 5:30 and then they would have me walk around.   I felt ok.   I think I fell asleep for alittle while.  5:30 came pretty quick and they allowed me to eat something...I choose a chef salad and soup.  I decided that Dan is alittle crazy when feeding me... alittle messy too.....but eating and lying down are not easy.   I was not very hungry anyway.   The nurse came back and I felt alittle lightheaded....but we walked to the bathroom.  I was taken back to the room and then she came back again to do a longer walk.   They just want you to be careful because the plug they put in in my femoral vein could come out and I think that would be pretty bad.   So I took it slow.  I little pain on my upper thigh...but I walked.   We were discharged around 7pm I guess.   I was very tired when I got home.

Monday, May 17, 2010

One more little Issue.....

The pre-op bloodwork shows I am Anemic......you know a month or so ago if you had told me this I would have been concerned and thought that is a problem but getting that news today really seems minor compared to my real problems.   But I guess I should be concerned because I am very anemic.  I am only an 8 and I should be a 12.   I had an appt with my primary care today and she is concerned.  Started me on Iron pills and wants me to be a 10 before I have surgery to limit my risk of having to have a blood transfusion.  Great.

Read a little more about Anemia

Friday, May 14, 2010

Met with the Surgeon

We wanted a second opinion and someone else to look at my results and things so we met with a Cardiac Surgeon today.  He was very nice, well spoken and seems to completely understand what I was feeling.  He thought having the Cath next wednesday was a good idea...it would also show if I have any coronary blockages.  He also said that on my chest Xray (I do not have walking pneumonia) an area of my heart seems enlarged and he wants me to have a chest ct with contrast.  Another test?   really?    He explained the way to go about it and he has a partner that does minimally invasive aortic valve replacements.....I really would not like a huge scar down the front of me......he hoped to gain more informatin fromt he Cath test and they said that we could have surgery scheduled as quickly as 2 weeks from next wednesday.

I know I spend way to much time online looking and reading about all this but I found this picture to be more disturbing than reading live accounts from peoples blogs.  I really am not ready for that.  I hope minimally invasive will work for me.

Wednesday, May 12, 2010

Second meeting with Doctor

I have been going to this very well renowned Cardiology group in Fairfax, VA for quite a long time now.  Maybe 2001 or even earlier.....and my regular doctor was on vacation when I had called back in April so I met with a new young female doctor.  She is very nice but very young.  When she came in the room, she seemed to be talking about me being in a "gray area".  Not quite where I would be having this surgery immediately.  I was a 1.6 in 2007, I now am a 1.1 and she would rather I be .09 or .08 before I do surgery except I am very symptomatic.  She did say one thing that felt helpful.
                  She said your heart keeps making up for the lost of work being done by this valve.  It            continues until it can't anymore.  And you may have hit that point....where your heart has had enough. 

But because, since I had seen her last, my symptoms were so much worse and really effecting my day to day life she wanted to do another test.  And I have this cough....wow this cough....it is something that happened when I say to much, have trouble breathing, get excited or basically do anything involving moving around alot.  She seemed concerned about that too.  She decided she wanted to do a Cardiac Catheterzation on me at Fairfax Hospital.  She kept calling it a last resort type test and she thought it would give her more insight on the size of my valve and such.  I asked for a chest xray because I feel as if I have walking pnemonia.  She agreed to give me that too.   So after the appt we went and got pre-op blood work for the Cath and my chest Xray. 

Tuesday, May 11, 2010

Chest Pain again.....

On the way to work this morning, while driving,  I got chest pains again.   It lasted for 30 seconds to maybe a full minute.  I got a very flushed feeling...like a hot flash or something.  I got to my job, felt alittle better and walked in.  Once I clocked in, I called the cadiology group.  I wanted to know if they had my results and to tell them about the chest pain on Sunday and now today.  When the nurse picked up, she said my doctor had been trying to reach me.   She wants to see me to go over Echo.  I asked nurse to please tell me over the phone and she said that my valve is in the "severe" range.  I could not believe it.   I may have to have open heart surgery.   I called Dan to let him know that we had an appt the next day to get results.

Monday, May 10, 2010

Sunday, May 9, 2010

Chest Pain

Ok, I had been very clear with everyone so far that I had "pressure" not "pain" when describing my symptoms.  But today, while driving one of my daughter's friends home, I had chest pain.  I was driving....why is everything happening when I am driving????   It last 30 to 60 seconds....radiated up to the top of my chest from the center and down my arms...especially my right one.....I in fact feel that arm is a little weak now.    Let's hope it does not happen again......

Friday, May 7, 2010

My Echo

They could not get me in for an Echo until May 7th.  I think it is crazy how they are stretching this out for so long.   But I had it today.  Dan went with me and the tech was very sweet with me.  After it was over he spent ALOT of time with me.  He showed me the pictures....got out a plastic heart to show me portions like the aortic valve and the aortic root.....how things are interpreted and calculated.  At first I thought that was so nice of him to take the time to do that......I even thanked him as we left.  But on the car ride home it hit me.....there is something wrong.....he would not have shown me this much stuff if nothing was wrong.  He had been my tech in years past and never spent anytime with me......so now I was alittle more worried.

Friday, April 30, 2010

...not just in the morning anymore

Ok, this has turned into an all day event now.....I have better moments but I am not doing great.  Dan (husband) really wants me to go to Ocean City this weekend and visit my parents. They had moved into a new house and I still had not been down.....but I really just don;t feel like myself.  I am so tired and exhusted.  My heart is always doing PVC's and I have trouble catching my breath.   But I went.  I was glad to be there once I was there but my ankles and feet told a different story.  My ankles were soooo swollen from sitting for so long in the car (3 1/2 hours).  I went to bed around midnight and my ankles looked worse than before.  The swelling moved down into my feet by sunday and even my toes were touching each other....it was awful..I had to get back into the car and come all the way home sunday afternnoon.  I did enjoy myself...we went to the beach, out to a seafood dinner with my parents and my aunt and uncle but I have to wonder if everyone knew how tired I was......

Thursday, April 29, 2010

Stress Thallium Test

Yesterday and today I did my test.  I really could not walk on it like I use to be able too.  I asked when I could stop and the moment I could, I did.  Not good.  I got dizzy and lightheaded.  I was soooo out of breath and I had pressure in my chest.

Wednesday, April 21, 2010

Don't feel quite right...maybe it's Stress

I have been though a lot lately.....maybe more than the average person on a day to day basis but I thought I was doing ok.  I got a new job in March.....the first week I was there...the first day in fact, I got shingles on my face.  Had to be off a few days.  Then one of my twins was sick with the flu, we thought, but actually ended up with a ruptured appendix and in hospital for a week.  Off from work a little more but I did go EVERY day and just left early to go to the hospital which was an hour from work.  Ok there's some stress.....Then about 2 weeks go by and my heart is just not feeling right.  It was always in the morning.  I would get my shower, dressed, blow dry hair and get to my car and then on my way to work it would not be beating right.....or I would have this strange pressure in the center of my chest with jaw pain.  This really started happened every day.  So my husband decided I really should see the cardiologist.  We met with her and she ordered some tests.  They thought my BP was way to high...which is strange for me, I usually run about 120/70...that day it was 196/98 ....crazy.   So we bought a BP machine for the house and we could never get a high reading on me.  I even had one of the nurses at work (I work in a doctor's office)  and she got 130/80...so I think it was a fluke...but who knows.....anyway.....we will see what the tests reveal.

Thursday, April 1, 2010

...a little history

     I decided to write this because once I found out I may have to have my valve replaced, the first thing I did was start googling and searching out peoples stories and experiences.  I came across a lot of male points of view, which I appreciated reading, but I thought I could add to the mix my thoughts, feelings, fears and outcome.  I also thought this might be a great way to keep eveyone I love in touch with what is going on with me, the surgery and my recovery

    I will give you a little background for those who don't know me.  I am 43 (yes, I know, too young for this) years old.  I have 4 children ranging from 17 to 11 years old.  I just recently remarried to a wonderful guy who is the one who really pushed me to go to the cardiologist a month or so ago.  I have as real tendency to ignore and hope for the best.  Not a great quality......I'm aware.  I was born with a bicuspid aortic valve that has required me to be mindful and watch.

     In my teenage years I experienced a lot of tachycardia and that only got worse when I became pregnant in my late 20's.  I finally had catheter ablation in 2003 and that actually completely cured the tachycardia.  It has never happened again!  SO really my heart quieted down for a while and then in the fall of 2007, I started to not feel right.  I was having PVC's(new for me), I lost my breath alot and I lost my voice.  My cardiologist started me on a beta blocker....but honestly they made me feel worse.  He told me that they may just go away.  He did all the usual things...holter monitor, echo, stress test  and heart CT......My echo showed my aortic valve opening (AVA) was 1.6.  A normal one should be 3mm to 4mm.  So he called that moderate and sent me on my way. I had one morning that was pretty bad, enough to scare me and we went to the ER.  They saw all the PVC's and PAC's but really everything else was fine so I was not admitted.   He was right, the PVC's did finally stop within a month or so.

     My heart did not skip a beat or make a blimp until......