THIS IS MY STORY . . .

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Mar 25, 2019

Hey friends,

 

It’s been almost 3 whole months since I last blogged.  SO much has happened. 🙁

 

This will be incredibly long, but I just want to document everything so that I don’t forget..

 

On January 25th, I came down with a scratchy throat and congestion.  I thought it was turning into a cold, and I was a little bummed since it’s always harder for me to recover from sickness.

 

Well, Sunday evening (the 27th), I suddenly started experiencing a fever, chills, severe low back pain, high heart rate, and more.

 

Because I have a central line, the protocol is to go to the ER in case of a central line-associated bloodstream infection (which has happened twice in the past).  I didn’t want to go at all and kept checking my temp to see if it was dropping back down. 🙁  Instead, my fever went up to 101.4 degrees.  We knew then that it was time to go in before it got any higher.

 

My parents took me to the ER at OHSU where I was quickly seen by triage.  They drew labs and hooked me up to IV fluids because my lactate and white blood cell count was high (they checked if I had the flu or a bladder infection…but both tests were negative).  The ER doctor told us that I was going to get admitted so that they could start aggressive IV antibiotics.

 

There were no inpatient rooms available at that time, so I spent the first night in the ER observation unit.  When an inpatient room finally opened up the next day, I was moved to 14C.

 

Medically, things went down hill from there. 🙁  And I was in the hospital for 11 long days due to “sepsis of unknown source.”

 

I had septic shock in August 2018 (and that is much more serious than sepsis), but physically, this was incredibly harder. :’(  Words can’t describe how hard it was to go through this..

 

I had severe nystagmus and was also vomiting and retching day and night.  That was the HARDEST part of this whole hospital stay.  I was maxed out on IV anti-nausea meds, and still, those only helped for a little bit.  All the vomiting caused my electrolytes to go all over the place…this really concerned the hospitalist, so I was continually given IV potassium, magnesium, etc. to try and stabilize the blood levels.

 

I’m not sure why (since I was receiving a ton of IV fluids), but I was extremely thirsty….I had to use a mouth swab, and I also sucked on ice chips.  The ice chips tasted SO good, but even those made me throw up. 🙁  My GI tract couldn’t tolerate anything at all, so the doctors switched all meds to IV form.

 

I was in tears so much of the time….from not being able to eat or drink anything for several days, from the severe nystagmus (which made me want to cut my eyeballs out), from the non-stop vomiting, from the whole body pain….and I kept crying, wondering why prayers weren’t being answered. :’(  Those were dark days.

 

I also had constant diarrhea and cramping abdominal pain….I know that’s TMI, but I’m just telling all that happened. 🙁

 

There were more than 10 IV bags on the IV pole….the nurses said I was so complicated.  I had numerous lines going into me, and they had to label them all.  Even though I have a double lumen central line, I had to get IVs placed because of all the medications.  My IVs kept blowing, though, because of so much scar tissue from IVs in the past, so I had to get a “midline” placed which is similar to a PICC line.

 

I was also given a PCA (patient-controlled analgesia) pain pump because the pain was so bad. 🙁  They set it so that I could push the button which delivered medicine every 70 minutes.

 

It took so very long for things to start turning the corner, and as I mentioned earlier, it just seemed like the Lord wasn’t answering my prayers….I now know and realize that He was answering them in other ways:

 

He blessed me with a private room which also had a bench near the window…my mom was able to stay with me each night and be right there when I was in so much distress (physically and emotionally).

 

The Lord also blessed me with 2 amazing and compassionate hospitalists.  And even my former home health nurse was able to take care of me for some of the time which was such a gift—in the ER, I asked the doctors if I could be admitted to the floor where my home health nurse was, and they said that they can’t control where I get moved….but God, in His kindness and providence, miraculously opened a room up on the exact floor where my nurse worked. :’)

 

In addition, the hospitalist called my neurologist on a Sunday to try and get in touch with her since my symptoms weren’t improving, and even though she wasn’t on-call that day, she answered her phone.  She suggested a certain IV medication to calm the nystagmus down.  And once I did receive it, the nystagmus completely stopped. :’)  It also helped the nausea/vomiting.

 

The Lord continued to give wisdom and insight to the hospitalists.  And not only did they treat me for sepsis, they also treated me in case I was experiencing a mast cell disease flare-up and/or exacerbation of the Wilson’s Disease.

 

I don’t know how I’ll ever be able to go through something like that again.  And I know it could very well happen once more. 🙁  This was so physically and emotionally taxing on my body…it’s been over 6 weeks now since I got home from the hospital, and my strength still isn’t back to my baseline.

 

But I’m taking it one day…one hour…one second at a time and trying to leave the unknown in God’s hands. I read this quote by Corrie Ten Boom recently, and I thought it was soo encouraging! “Faith is simply trusting the character of God, even when life gives you reasons not to.”  So I will continue to have faith in God’s plan for my life….I’m reminded that He knows what I can’t see. ❤️

 

______________________

 

In other news, my PCP is referring me to OHSU immunology to see if we can get to the bottom of these sepsis episodes.  My appointment with the specialist is next month.

 

I also had a follow-up with my endocrinologist to go over the results of my 2nd bone density scan that I had completed recently.  2 years ago, I was diagnosed with osteopenia, and sadly, these new results from the 2nd scan show that I have more bone loss in my spine. 🙁  If I keep losing bone at this rate, my doctor said I will soon have osteoporosis.  She ordered some more tests and also explained how we need to start treatment soon to try and slow the bone loss.  This is a really hard decision to make because one of the osteoporosis drugs causes increased risk for infection.  And given my history with sepsis, she’s hesitant to trial that specific one.  The other medication options are also not good to take at my age in case I ever get married and would like to have children down the road (all my life, I’ve always wanted to be a mother!)….  Please pray the additional tests that my endo ordered will give insight and wisdom…I don’t know what to do.. 😞

 

2 weeks ago, I had yet another ultrasound-guided right hip steroid injection.  My orthopedic surgeon repaired the torn labrum last August, but I’m still having a lot of hip pain.  It’s taking many months for my hip to heal, and with these sepsis episodes/hospital stays, the healing of my hip always gets set back.  Anyways, the doctor who did the injection had a lot of difficulty getting the needle into my hip joint.  I have soo much scar tissue which caused the needle to bend as he was trying to insert it. 😟  That was super painful!!  So he is referring me to one of his orthopedic colleagues.  He said that she can do full ultrasound evaluations of the hip, and he’s wondering if I may need additional injections in other areas of my hip..

 

My orthopedic surgeon did say at my last follow-up that sometimes she has to do another hip surgery to remove scar tissue….but she’s hoping that injections with physical therapy will fix my issues so that we don’t have to go down that route..

 

It’s also been more than 4 years since I was started on TPN (IV nutrition), so I asked my GI doctor for a little break.  It’s just so hard to be always hooked up to the IV pump.  So in January, he decreased my TPN so that I’m off of it every Monday, Wednesday, and Friday.  I still have to do IV magnesium every day, but those 3 days that I’m off TPN, I move my afternoon IV magnesium and infuse it during the night.  It’s simply glorious to not be hooked up at all during the day (on Mon, Wed, Fri)!

 

But, sadly, the last few weeks, my weight started dropping. 🙁  We’re watching it closely, and he said that if my weight starts dropping back down into the 80s, then he’ll have to increase my TPN again..  Would appreciate prayers for this as well and that my weight will hold!

 

Thank you so much for all of your constant prayers and support.  When I was in the hospital, all the messages, prayers, flowers, treats, and cards really cheered me up and kept me going!  I know I’ve said this before, but I truly couldn’t walk this long journey without all of you by my side. 💚

Post written byKerissa

Check out my previous posts below

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Mitochondrial Disease Awareness Week 2 ...
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2019 Mitochondrial disease appointment ...
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Reflections on this past year 2018 ...

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