Fall 2010 thru 2012

As I am learning to blog, I thought since I was placing these in categories it would keep the posts in the order I wanted, but I am still learning and am going to be tweaking it for awhile.  Please bear with me.  I am trying to make it as easy as possible for my story to flow.

I returned home from National Jewish and saw a gastroenterologist and said I his entire career (he was an older gentleman) he had only seen one other case like mine.  After all the testing was done it was determined the valve at the base of my esophagus was never closing and I was silently aspiring to my lungs and even up into my sinuses.

I was referred to an experienced surgeon and was scheduled to have a Nissen Fundoplication.  Easy description is they go in an wrap the top of your stomach around the base of the esophagus to create a valve.  This is a one way valve, no vomiting.  Again, I googled and freaked but really what other choice did I have.  For the first time since this all began 6 years before I had a chance at getting better.

I arranged the surgery and had it in November 2010.  It was AMAZING!  I had a lot of pain but I could breathe.  Two weeks after the surgery I was able to stop all of my steroids and asthma medications, my sinuses cleared up and I was getting my life back!!!

About 8-9 months after surgery, I began to have some minor difficulty breathing again.  I called the surgeon and gastroenterologist to see if the surgery could come undone.  They told me it was very rare but I should probably have an EGD to look at the wrap and make sure that it was intact and had not slipped.  Just my luck it had slipped and I also had a large hiatal hernia in my diaphragm that they had placed mesh over in the first surgery and it had not held up either.

So, back to surgery October 2011, same surgery, but NOT the same outcome.  I woke up in recovery feeling like there was an elephant on my chest and could not catch my breath.  They did an EKG and told me I was just having a panic attack.  After, I got my catheter removed I could not pee but I really, really needed to pee.  They told me I need to walk.   I walked miles around that damn surgery center and just kept feeling worse and still could not pee.

The next day things really took a turn for the worse.  My vitals were all out of whack, an ekg was ordered and was abnormal, my troponin levels were abnormal and I felt like death.  An ambulance was called to the surgery center I was at and I was transferred to Cardiac ICU in the main hospital.  After arriving I was taken down for a heart Cath.

Terrified?  Yes.  My heart Cath revealed pericarditis, which is fluid in the sac around the heart as well as fluid in both of my lungs.  I stayed in CICU at Salina hospital for 8 days and then came home.  Was readmitted to McPherson Hospital within 24 hours and eventually transferred to Wesley hospital in Wichita as a direct admit to CICU.

They gave me huge doses of Lasix to try and get the fluid off of me but it just was not adequate.  This led to me needing to have a thoracentesis.  This is when a needle is inserted into your lung by guided imagery and fluid is drained and collected in a sterile bag and in my case sent to pathology.  After the procedure I had a chest X-ray to make sure that my lung had not collapsed and all was in good shape.  I came home 2 days later.

I got home and just got worse again and was sent back to Wesley CICU and as a technologist was doing my echocardiogram asked if anyone had ever had difficulty finding my heart?????  Ummmmm, no.

Then I went to CT scan and in the middle of the scan my nurse comes out and says are you having difficulty breathing.  Yep, I’ve mentioned it a time or two.  So as I’m laying in the CT machine I am informed that I have a tension pneumothorax and I am going to need a chest tube immediately.  OK, I really want to call my family.  They said they would call them but it would be done before they could get back.

I naively believed that I would be taken to an operating room and knocked out.  I was taken back to my CICU bed, the surgeon came in and said these nurses are going to hold you down, I need you to be very still, I will numb the skin before I cut, but I cannot numb the chest cavity and it will really hurt when I pop it.  Panic is in full force mode, I am all alone cause I told everyone I was fine and they should go home.

Excruciating does not even begin to describe that horrific experience…I would not wish that on anyone, ever.  It took almost six months to resolve all the fluid load that I had.  It involved another trip to Colorado and more specialists and unfortunately I didn’t get back to the wonderful state of health I was feeling after the first time I had the surgery, but still better than before that.

That surgery also only lasted 8-9 months and at that point I was sent to KUMC for the second revision of my fundoplication surgery.  It went OK, but the whole in my diaphragm and gotten much larger and they could not even suture it together so they used a piece of tented mesh to cover the hole and hopefully keep my abdominal organs in my abdomen.

This was now the fall of 2012 and I was losing some of that wonderful hope that I had grasped onto again, but just kept on praying for a miracle.

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