A Bump In the Road

Well, my October started out pretty exciting this year.  Not exactly how I wanted it to go, but a sober reminder that you can't take anything for granted.

Back in February, the cardio docs wanted to change one of my anti-rejection drugs because of the affect it had on my kidneys....let's face it, I don't need to deal with a kidney transplant!  So, after a couple of biopsies where I was on a low dosage of Cellcept, things looked great.  Blood work was coming back fine, no rejection issues were being seen, and everyone thought everything was fine.  I was finishing school and working at night so naturally I was tired but for the most part, I felt fine.

This summer, I rested.  I wasn't as active as I probably should have been and I began to notice a cough in July.  Hearing that allergies were very high this year, I was thinking it was just that.  Then, after a couple of weeks of being at school I could do nothing but cough.  My coworkers took up the mantle and did some of the presentations we were supposed to do because I couldn't talk without breaking out into a coughing fit.  I went to my primary care doc who recommended Claritin and a 14 day round of antibiotic.  And she noticed that my blood pressure and heart rate was up.  I went back 2 weeks later and she decided to change my BP meds after consulting with my cardio docs, but a key bit of information wasn't exchanged....my heart beats had gone up 20 beats/min faster than it should have.

I knew I had a 6 month cardio checkup coming in October so decided to not go ahead and make an appointment earlier, which I probably should have.  I also had gotten out of the habit of doing some things that transplant patients need to monitor, like weight, sodium intake, etc. and so I didn't notice that I was putting on extra water weight.  My hands and feet don't swell like others, my calfs and arms do.  When I noticed that I had put on water weight and I added extra Lasix to help take it off, but it didn't get it all.

I had an echocardiogram on the 30th and since this was something like #35, I could tell that something wasn't quite right about the heart's performance as soon as I heard the test.  So, knowing I met with the cardio docs the next morning I went ahead and packed a bag to take just in case.  I was right.  The echo showed an ejection fraction (the ability of your heart to pump) at 29% which is heart failure....since the transplant mine has run somewhere between 65% and 55%.  Naturally, this caused my cardio docs to freak and they put me in the hospital.  The ironic thing is that Tuesday was the best I had felt in a month because I decided to stop taking the Claritin and added the extra Lasix.

But, transplant patients have a very delicate chemical balance to follow, and all of this had thrown me off completely.  I had a biopsy done that afternoon and a Swan catheter to measure the inside of the heart was added.  I was put on large dosages of Lasix and Prednisone to help with the rejection possibilities.  Luckily enough, I haven't seem to have done any major damage to the transplanted heart.  I'm back up to around 60 pills a day (I will come off of some of them gradually) and now watching my diet a little closer.  I go back in a week to get another echo to check the EF (it was 49% at checkout) and check my progress with the cardio docs.  I stayed off work this week because of being on high prednisone and around sickly kids at work but am going back next week full time for 2.5 days then will have Fall Break to rest some more.  By that time, I'll be on a much lower dosage of prednisone and hopefully off Insulin (this is as a result of the high dosage of Prednisone) and back to oral meds for that.  One good side effect is that I'm losing a little weight as well!

This is a great reminder for those of us who get complacent with our health.  We need to get active, we need to watch our sodium intake and sugar intake, and we need to be proactive in our health care.  If any of the pieces of the puzzle were figured out earlier, we probably could have avoided the hospital stay. I had one other instance of this same type of rejection right after the transplant and bounced back, so everyone is thinking the same will occur this time.  It wasn't a major rejection and no tissue damage seems to have been done.

I'm fortunate that my parents were able to be around to help as well as my brother.  My parents are getting older and this takes a toll on them, but friends and family also stepped up to check on them for which I will be eternally grateful.  Transplant patients often have a life expectancy of around 20 years and I'm approaching year 9.  I have always said that these extra years have been bonus time because I was so sick before the transplant.  My plan is to be around for a lot more years but I also have to understand that situations like this will not help my situation. I'll just keep plugging along and see what happens and cross all those bridges when I need to.  Live in no fear, enjoy each day to the fullest that I can, and go forward with faith.  Not a bad way to live!

Heaven Is For Real!

My summer has been full of closet cleaning, family history research, and trying to catch up on my reading and music enjoyment.  Anyone that knows me, knows that my music and reading tastes vary greatly.  I'll listen to anything from Billy Idol to Bob Wills, and read anything from Karen Kingsbury to Tom Clancy to Ken Follett....don't judge!  But one book that I have recently read was truly a joy to read...so much that I read till 4am!

Heaven Is For Real is the story of a little boy who, in a very critical medical situation, believes that he spent 3 minutes in Heaven and provides his minister father with interesting information on what Heaven is like and those that reside there.  It is moving, it is humorous, and it is faith building.

Several times I've been asked if I had a near death experience when I had my transplant...and the answer is no.  However, I do know that the Lord was watching over me and was with me the entire way.  And it is with that same faith that I believe today.  The Lord put the Jeremiah verse about "having plans for you...plans for good and not evil" on my heart during the "procedure that became the ordeal", and it has stayed with me every since.  I've often been told that I had a peace around me as my condition worsened, and that is true.  I gave up all the anger, disappointment, and forgave those that I had held grudges against, and I turned everything over to God.  If it was His will that I survive, then fine.  If not, I had freed my soul.

Now, in the 8 years since, I'll admit that sometimes that anger and disappointment has come back, and I have to take some time and remember how much I've been given and let it go.  My job often doesn't show me immediate results, but I do know of at least one child that I managed to get out of a bad situation and if that was all I was I was saved to do, then that is fine.  But this book reminded me that all you need is a child-like faith and trust, and God will take care of the rest.

If you want to read something inspiring...give this book a chance.

All Clear!

After some medication changes that required me to go back in and have two more, somewhat painful, heart biopsies....I'm all clear!  It's not that I don't like seeing the old team of people who took care of me immediately post transplant, but darn it....those things hurt the more you have 'em!

You're not knocked out...they just give you a local near your carotid artery then stick a catheter in it to put the LONG (my term) grabber down to your heart.  Because I have to be special, they have to go in on my left side and through my heart valves to get to where they have to take the tissue...this makes for a more risky situation.  Fortunately, I have great docs who do their best to make it as comfortable as it can possibly be.

I'm just glad I don't have to do anymore!