From the Beginning

Hi, Everyone!

I'm writing this blog as a way to keep everyone informed and make sure that my information is shared accurately.  If you have any questions, just let me know!

From the beginning....

I have always been a pretty healthy person.  Yes, I get sick sometimes, but I've never had anything significant.   However, on June 23rd, my husband John's birthday, that changed.  Here is what happened:

June 23rd, 2011

John wanted to go out to dinner for his birthday.  So around 4:30pm we all piled in the cart to head out to dinner.  Now the next hour or two are a bit fuzzy, so I'll tell you what I remember.  John started driving and we were discussing where to go for dinner.  John told me to pick a restaurant.  I started feeling very off and a bit confused.  I tried to think of somewhere to eat,  but couldn't think of anything at all.  I couldn't think of the name of a single restaurant.  John then suggested we eat at Red Robin.  Red Robin is my absolute favorite restaurant.  But when he asked me, I truly had no idea what Red Robin was.  I remember being very frustrated that he was asking me to go somewhere that I had never heard of and was getting mad at me for not knowing what this restaurant was.  The kids were cranky and now I was acting strange, so John decided to to through a drive thru instead.  We went to Taco Bell and John asked me what I wanted.  I was trying to explain to him that I wanted a drink for Kira, but I couldn't think of the word "cup" or Kira's name.  At this point I was getting very confused.  I don't even remember John ordering anything there.  We then drove to McDonalds to get the kids some happy meals.  The only think I recall from this drive thru is being very frustrated that John and the employees weren't speaking English.  I couldn't understand anything anybody was saying.  However, I couldn't tell John how confused I was.  When we got home I was extremely tired and John had me go lay down.  By this point I was also having some vision problems.  I was having a hard time seeing out of my right eye.  It was like I had a blind spot on my right eye.  I laid down for a little bit and about 30 minutes later or so I called John in because I couldn't feel the right side of my face or my entire right arm and hand.  It wasn't like they were asleep, they were numb.  It was as if someone had injected Novocaine in my face and in my entire arm.  At that time, John told me he was taking me to the ER.  I told him there was no way I was going to the ER.  My mind was a bit more clear by now, but I was definitely still fuzzy.  My neighbor came over to watch the kids and between her and John they convinced me to go.

Once we got to the ER, it was packed and I was even more frustrated at being at the ER.  Once John told them my symptoms, they took me back immediately.  I was immediately given a CT, chest x-ray and EKG.  I had a ton of doctors looking at me and talking with me.  They told me they thought I had a TIA or transient ischemic attack.  It's basically a mini stroke.  This stroke is where there was a blood clot that traveled to my brain, but that my body did it's job and dissolved it.  I was quickly admitted to the hospital with a slew of tests scheduled for the next day.

June 24th, 2011

I "woke" up in the hospital this morning.  I say "woke" because I never really got any real sleep.  Hospitals are NOT restful places.  I was hooked up to cardiac monitors and was bothered all night long.  Today I was scheduled for:

• MRI and MRA of my brain
• ultrasounds of my neck
• echocardiogram

Things went pretty well.  I was sick and tired of being covered in ultrasound goo, but really the tests weren't that bad.  John brought the kids up for a visit.  I was sooo happy to see them.  Kira was completely terrified of me and wouldn't even talk to me, but Isaac snuggled with me without a problem.  That made me so happy!  I also got a call from my dad and step mom in CA letting me know that my step mom, Peggy would be flying out to come help us out.  We were going to need some help with the kids while I was in the hospital.  Initially I thought this was silly because I thought I would be out of the hospital that day.  However, this certainly wasn't the case.  I had some visitors at the hospital today from John, my sister Ami, and my brother Sunjay and sister-in law Isa and niece Olivia.  My mom couldn't come because she had just flown out of town to Houston.  I told her to go...I was expecting to be out of the hospital today, maybe tomorrow.  Then, I was told that I would be in the hospital another night.

That night at about 11:30pm my cardiologist walked into my room and flipped on the light.

Talk with the Cardiologist....June 24th/June 25th

The cardiologist woke me up because he had a concern about my echo cardiogram.  It took me a few minutes to really wake up and understand the gravity of what he was telling me.  The cardiologist was explaining that there was an abnormality on my echo cardiogram.  He said that there appeared to be a mass on the left wall of my heart.  However, because I am so thin, it was possible it was just a shadow from my ribs.  He wanted to perform a transesophogeal echocardiogram (TEE) in the morning.  This is a procedure where they put a tube with ultrasound machine on the end of it down my esophagus and take a new echo from inside.  This should prevent any shadows.  The Dr. encouraged me to call my husband right now to discuss it with him.  I called John at about 11:45pm to discuss this with him.  He was pretty groggy from two sleepless nights with the kids!  I didn't get to discuss much, but I made plans for the TEE at 11:30am and called it a night.  Some night, though!  I was so stressed out I barely slept at all.

June 25th, 2011

This morning was the TEE.  I was cranky and tired.  I hadn't had anything to eat or drink since about 7pm the night before and wasn't going to be allowed to eat until about 2pm or so.  John came in to see me at about 10am this morning along with my step-dad, brother, sister-in law and niece.  Oh, and did I mention we had plans to go to Prescott, AZ for a wedding today?  We had been looking forward to this for a loooong time.  Anyway, they came in to start setting up around 11am.  They gave me phentynol and valuum.  I also gargled with some awful, thick "mouthwash" that was supposed to numb my throat.  I don't remember much except trying to tell the doctors during the procedure that the tube was hurting.  Of course, no one could understand.  And I DO remember throwing up on doctor.  LOL.  That's what happens when you shove instruments down some one's throat!  I recall being very groggy and asking John how thing went.  I THOUGHT he said everything looked fine.

Hours after the procedure and when I was a bit less groggy the cardiologist came back in to talk to me about the results.  There was STILL something on my heart.  There was a mass that was visible on the left wall of my heart.  He was calling it an atrial mass at this point.  This was very stressful, but I was so sleepy I was too tired to be stressed.  I was starving and thirsty, but my throat was killing me at this point.  It hurt to talk and to swallow.  I was cranky, sore, and tired.  John brought me some delicious soup from Souper Salad and he stayed with me until bedtime that night.  I was also started on the evil Lovenox injections that night.  I was told that I needed these injections to prevent me from any further blood clots.  These were extremely painful!

June 26th, 2011

I thought this was the day I was going home.  I was done with my tests.  I had been on cardiac monitors non-stop and was fine.  I felt great other than being very sore from the Lovenox shots and having a very painful throat from the TEE.  I had passed every test except with my abnormal TEE results.  The only thing that was preventing me from going home at this point was my injections.  I was on twice a day Lovenox injections and they are VERY expensive.  My insurance had denied these at this point.  John came in to talk with the doctors, nurses and staff to see what could be done about getting me discharged.  The director worked very hard, but being that it was a Sunday, I couldn't be discharged because my meds were still not approved.  So John brought Isaac to visit me in the hospital.  We had a great time!  He played with my bed, snuggled with me, and we walked around the hospital floor.  Kira was too freaked out to visit again, but that was ok.

June 27th, 2011

Today was the day...I was going home!  At about 10am I received a call from Walgreens that my prescriptions were ready to be picked up.  Everything had finally been approved!!  I anxiously waited to be discharged, but I wasn't released until 5pm.  Grrrrr.  But I was free and I was thrilled!  I was released on twice a day Lovenox injections, Coumadin daily, aspirin daily and Lipitor as well.  I was told to follow up with a neurologist in 2 weeks, cardiologist in 1 week and family doctor in 2-3 weeks. 

Being out of the hospital was amazing.  I was sooo excited to be with my kids again.  I missed them like crazy.  And there is nothing like sleeping in your own bed.

June 28th-July 4th, 2011

It was taking me some time to get recovered.  I was still so exhausted and sore.  The Lovenox injections were painful and I couldn't even wear regular pants or shorts anymore with all of my bruises.  However, on the 31st my INR levels were finally high enough.  An INR level is a measure of your blood coagulation.  Doctors want my blood nice and thin.  The Lovenox was there to protect me as an instant blood thinner until the Coumadin was built up in my system.  Now that the coumadin was built up, I can continue on daily coumadin and discontinue the Lovenox.  I will be going for weekly blood draws to check my INR levels.  This is typical of anyone on Coumadin.

July 5th, 2011
The Initial Diagnosis

After a great 4th of July, it was time to head back to reality and go to my cardiologist today.  I was armed with a lot of questions after having time to absorb all of the information that I had received. 

I had a 1pm appointment today.  They started me off with an instantaneous INR reading done with nothing more than a pin prick and an INR reading machine.  It was so much easier than doing a blood draw!  My INR was great at a 2.4  My ideal INR is a 2.5, but anything between 2 and 3 is acceptable.  So I'm doing great there.  I was then hooked up to a machine to get a quick EKG reading.  Then the Dr. came in to talk with me. 

We talked for a long time.  The Dr. took me into his office to spend about 30 minutes with me showing me my TEE films along with the original echo.  He showed me where the mass was and talked to me for a long time about it.  So here it is...it's an atrial myxoma, that's fancy talk for heart tumor.  Never in a million years did I think I would be sitting in a cardiologist's office at 31 years old after feeling fully healthy all of my life being told I have a tumor in my heart.  The good news is that it can be operated on.  And no, I don't know at this time whether it will be an open heart surgery or done laproscopically.  At this point, I'm just stressed out about the idea of having heart surgery at such a young age with 2 kids to raise.  The plan of attack is to wait three months and repeat the TEE.  At that time I will also have a more advanced test done to give a 3D image of the myxoma.  The Dr. is going to see if my insurance will cover an iodine test where they inject me with iodine and get a great image of my heart.  If not, I can still get an MRA done and get an even better picture.  At that point, we'll discuss if the mass has changed size at all and how surgery will be performed.  The cardiologist is hesitant to give me a firm diagnosis until he gets to see more tests.  He kept telling me what an interesting case I am.  It's so rare to find a myxoma this early on.  Usually people only find out they have a myxoma when it's too late.  I am so lucky to have had the TIA and that John made me go to the ER,. 

The Dr showed me in a LOT of pictures what they myxoma looks like on my films.  It looks like a finger with a big blob on the end.  Apparently this is called a stalk and is typical of a myxoma.  It kind of flows or moves back and forth with the beating of my heart.  I asked the Dr. to write down how to spell "myxoma" and he told me whatever I do, don't Google it when I get home.  And of course I did!  LOL  There is some scary stuff out there, so maybe I shouldn't have looked it up online, but I can't help it.

So the plan is to go see the Cardiologist every month until October when I'll get another TEE and a dye test of my heart.  Then we'll discuss surgical options.  Until then, I'm on coumadin every day and go for blood work every week.  I'll also be seeing a neurologist soon to discuss my TIA.

I plan on updating this blog only when I have news to report.  Hopefully there won't be any news for another month, but if I have anything new to share I'll be sure to post.  If you have any questions on anything feel free to ask!