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.......

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. 

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. 

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.

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

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.

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. 

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.

.....no word

Heard nothing today about my Echo results.....

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......

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.