I’ve been MIA for a few months-

Due to numerous hospitalizations over the past 4 – four months, three lengthy ones to be exact, i haven’t been doing a very good job of keeping up on this site.  I’m a bit disappointed n myself for that.  I should have taken my computer with me to the hospital, which I will be doing in the future i hope being that Im not too sick to post.  I am facing some serious procedures possibly in the near future.

In April I was admitted to the hospital with close to a 105 Degree fever.  I ended up being Septic, having pneumonia and my central line was infected. I was in the hospital for over two weeks and discharged on IV antibiotics  .In May, while still on the IV antibiotics I was running a fever and having chest pain so I went to my family Dr.  He decided to send me for follow-up blood work and an ECHO.  Within an hour of getting the ECHO i got a phone call and heard them talking about a mass. At first i thought they were saying it was on/near my central line, because it had been running so sluggish, but the mass they found was actually in the right atrium of my heart- which is a rare location. I met immediately the next day with a cardiologist just to get admitted back into the hospital to the ICU/step-down unit again.  Come to find out I had endocarditis, 3 lung masses as well- which the think embolized there from the mass in my heart.  To date- 5 CT scans, 3 ECHOS’s,  2 TEE’s and a cardiac MRI later they still aren’t 100% sure of what it is.  They’ve been bouncing between heart tumor (myxoma), vegetation, or blood clot (which at this point has been ruled out).

What has continued the indecisiveness in what exactly this golf balled sized mass is, is the fact July 13 I was admitted back into the hospital after my infusion company called to alert me that my white blood cell count was sky high and I needed to go get central line cultures.  I’d been putting them off for several weeks despite ongoing, low-grade fevers ranging from 99.9-100.9.  Only twice did it go above 101. My infusion therapist had been after me but I had significant anxiety over going to the hospital/ER to get checked out, especially the one where i was staying.  She told me however, at this point, I had no choice!

So I went to the hospital and the results were shocking.  The mass in my heart was septic, more masses had embolized to my lungs and they too were septic and I had a lung infection, plus my line was infected.  It had come back showing positive for yeast and eventually candida.  They ascertain that the infection/yeast in the line came from my TPN and the sugars sitting in the line and then growing yeast.  It’s rare but an occurrence  with being on TPN.

In the interim of not being in the hospital i have not always had a lot of energy and had to do a lot to try and recover from these illnesses. I also suffer from a number of other chronic illnesses as well.  Autonomic Neuropathy being one of them with POTS as part of that.  For many weeks I struggled with frighteningly low blood pressures in the 60’s/30’s-40’s range.  I was frequently passing out, weak, constantly fatigued and dizzy all the time. And then I got that I got that better under control and was ready to get geared up to get started to get to work.

My mom and I were headed to the beach for a number of weeks for a much needed vacation.  I can’t tolerate heat much and I’d be spending a lot of time inside so it would be great! Only to find out that the outlets in the house were ancient.  Its an old family house-bulit in the ’50’s and they were only 2-pronged outlets and not compatible with my plug on my computer.  So with all the craziness going on again my site got pushed to the back burner!!

But I’m back now and plan to stay real active and engaged and hope to get a lot of people coming this way to see, read, comment and share their experiences as well.