Monday, November 15, 2010

Oh My Broken heart!

For those of you who have not caught my daily rant on Facebook,I thought I would give you a little more information as to what is going on with my precious heart!I was in St Louis last week for a Stress test and a echo of my heart,the stress test itself was quite interesting,having POTS,and being without my medicine for two days as they recommended,so it didnt start out too bad,I was talking to the tech,noticing my heart was around 130,not a big deal to me.When the stress test advanced to the second level,boy did I see a difference,and almost immediately my heart rate jumped to about 175.The techs eyes got big,and he asked me how I felt,I told him I was getting winded.He called the test on account of my heart rate!Everything else went just fine.The next day I got a phone call from my cardiologist,to go over the test results with me,he said they found 2 problems,.the first is that my heart has too many extra,yes.But really its a problem,they are deciding what to do about it.The second problem is the biggie.It looks to be genetic.I'm sure many of you have heard of a "long QT syndrome".Well this is the new,more recently discovered genetic heart problem called a "short QT syndrome"Essentially,my heart does not reset itself quickly enough for the whole next series of beats to to fix it?Only one way,an implant,like former Vice president Dick Cheney had put it,its not a pace maker,but rather a defibrillator that will slow my heart down when it beats too fast.How do I feel about this?Well,I'm glad they found the problem,but scared at the solution.So,I must finish wearing the 30 day monitor I am now wearing that I push the button if I feel something "funny".When I am done wearing it,same day I go for a 24 hour loop,which automatically records every heartbeat I have for 24 hours,so they can watch this short QT syndrome of mine very closely for a 24 hour period.Then they want to do genetic testing to see if I carry the gene for this,if I do,My son will need to be checked out.As for now,I am so glad I did early Christmas shopping,no headaches!!!House is decorated to perfection that would make Martha Stewart happy,just a few more ornaments on the tree tonight and I am done!So,I will update all of you after my next big Dr Appt!!Hang in there with me,I need all the support I can get!~

Friday, November 5, 2010

Tests,tests,and more tests!

The crisp fall air is finally here,and as the leaves are drifting to the ground,this girl is getting buried in medical tests!I met my great new cardiologist last week in St Louis.His name is Craig Reiss,and he is awesome!He spent about an hour with me,explaining that autonomic disorders can affect your heart in many ways,but there are also many heart disorders that can mimic autonomic disorders,so they have to be ruled out for me.Also,since I have Lupus (currently in remission)he is checking for the clotting factor many people with lupus have.He said blood clots could have broke free,and went to my lungs,and although that is potentially very serious.he said it would cause the rapid heart rate and dizziness also.So,he wants to be very through with me,I appreciate that.He sent me to have labs drawn,and the tech started putting in the orders,and ALL these labels started printing out,I mean label after label.I'm thinking,they can't possibly all be mine.She turns around and looks at me and says"Oh Jesus"I said."Oh My" She said"I have never drawn this much blood from one person before"I said "well,I have never given this much blood to one person before"It started out as 23 tubes of blood,then after she looked at all the labels there were 3 duplicates(lucky me!)so it was only 20 tubes of blood!I told her I was trying to get over anemia!I better double up on those vitamins!So,besides the blood draw,he wanted me to wear a 30 day heart monitor,which I am now wearing.It also randomly records my heart at different times during the day and night,so the thing is constantly beeping at me for one thing or the other!It's really not horrible,but I will be glad when December 1st comes and I can take it off and mail it back to them!On Monday afternoon next week,I return to St Louis to Have A Stress Test Done at the hospital,and a echo of my heart.They told me I cant take my propranolol ,which I take for my dysautonomia the night before the test ,or the morning of the test...this really worries me!I jokingly told my husband maybe I better pack a bag just in case I end up being hospitalized overnight!My test is sort of late in the day,3:00 in the afternoon,so I am packing a overnight bag,just in case something happens.St Louis is 2 hours away from my home,I want to be prepared!I am also having an echo of my heart done on Monday,and then,hopefully that is the end of all the testing.The Cardiologist was very knowledgable about dysautonomia,and really eased my mind about it.He said propranolol is a perfect medicine for it,and it seems to be working great for me.So,get through the beginning of next week,and get past this 30 day monitor,and then I will have had every test known to man done!On another note,he ok'd me to drive again,after a year of being confined to my home,unless Kevin or my mom took me somewhere,I can now drive again.I can't tell you enough how this small bit of independence has brightened my life!I am taking my son to the movie tonight!It's great to be able to get out and be independent,and on my own.It's one thing I have wished for for so very long,to have that restored to me has meant so very much.So,I will update here after I have all my testing done next week.I hope everyone has a great fall weekend!