Tuesday, February 25, 2014

Eating through a tube

What a week!  Well, more like 7 weeks.  If we are being specific, 4 years.

A few months ago I was diagnosed with gastroparesis (delayed gastric emptying).  At the time it was not severe or interfering with my quality of life.  Then came January 5th when I lost my appetite.  A lot of illnesses were flying around and I assumed I caught one.  However, I never got my appetite back again.  Each time I would try to eat I would experience a feeling that one more bite will make everything come right back out.  Liquids were harder because they hit my stomach so quickly and stayed in for so long.  Imagine eating your dinner and instead of digesting it, you kept it in there, right at the top and woke up in the morning still feeling last nights dinner.  I was too afraid of germs to make a doctors appointment so I waited longer than I should.  Finally, last Monday I called for a doctors appointment.  I was treated for dehydration and the doctor made a call to a gastroenterologist (GI) specialist.  The plan was to get some testing done and go from there.  Unfortunately, I only became more dehydrated landing me in the Emergency Room on Thursday night.  I arrived with a migraine and stayed for a while to get fluids and meds for my head.  We were told to see a doctor the next morning at our medical office.  My labs showed dehydration and malnutrition (obviously) and since I still wasn't able to eat or drink it was determined that I would be needing a PICC line.  A PICC line is an IV that goes in through my arm and up to the top of my heart.


Friday afternoon, I went into the hospital to have my PICC line inserted.  What should have been about 1 hour took 4.  After a failed attempt on my left arm they finally succeeded on my right arm.  I stayed 2 more hours for more hydration.



Saturday morning was my first visit with my home health nurse.  She came to teach me how to use the TPN (total parenteral nutrition) which at first is quite overwhelming.  Anthony wasn't home so I needed to learn it all to be able to do it myself.  After going through the lesson it was time to start the pump and get it in me.  As soon as it started I had an adverse reaction.  It felt like something was squeezing all the air out of my chest causing me to cough out my air and not inhale.  My face then felt like it was burning, turning bright red, followed by turning pale, sweating and then shivering.  The nurse reacted quickly turning it off and flushing my line.  At this point I had no idea what we were going to do if I couldn't tolerate TPN and I couldn't eat enough to sustain.  A few hours later the doctor had us try regular saline with added potassium and dextrose and unfortunately I had the same exact reaction.  The doctor sent us to the Emergency Room and advised that I be admitted into the hospital until we could get this all figured out.  I called Anthony home from work again and we took off.  As we were driving down there I felt uncomfortable in my chest.  Sitting in different positions would make it feel better so we assumed there must be a problem with the PICC line, most likely touching my heart.  The walk from the parking lot into the hospital was difficult.  I was out of breath and feeling fluttering in my chest.  I explained the situation to the admitting staff and suddenly became extremely light headed.  I felt myself start to fall backwards so I grabbed Anthony and then I went limp.  A security guard that was walking right past us caught me from behind with Anthony hanging onto my arm and before I knew it, I was in a wheel chair being swept back to triage where I had an EKG and then brought to a room.  I don't get scared that often about my illness but when this happened I was scared.  I usually like to joke around (shocking, I know) but I just laid there praying.  We saw the doctor and then I was sent for a chest x-ray to check the placement of my PICC line which turned out to be fine.  The doctor saw no reason for me to stay in the hospital and since he thought the placement was fine, we went home.  We certainly were not happy since I nearly passed out upon arrival and had such bad reactions earlier.  Going home without answers as to what was going on was quite unsettling.  I was a little nervous but actually felt better about going home because I am such a germaphobe and hospitals tend to be filled with nasty germs.



I had home health care nurses come each day and have successfully been able to do the TPN through my PICC line.  A friend who also has a mitochondrial disease came over and gave me an education but more, a sense of relaxation.  Knowing she is a phone call away for any help puts me at such ease.  I am so grateful for all the support that I have.  My family has really stepped up, dropping whatever they were doing at the time to help me with the kids or take me to the hospital.  It's a blessing to have this kind of love.




My newest accessory, a backpack filled with nutrition feeding my body and keeping me alive.  For now I will be hooked up to this 24/7.  I see a specialist on Thursday and hope to get more answers.  Until then, we are learning to adapt.  It's a hard change, one I wasn't expecting to happen so soon.  It's frustrating, scary and overall just a bummer to be going through.  It is what it is and we will embrace it. I know there is always going to be light even though there are dark moments and I know I have so much to be grateful for.  I am completely aware that I could have it much worse, so I count my blessings.

12 comments:

  1. Oh my Karen -- you are such a brave soul, so full of love! You are so realistic. I love that about you! My prayers will be not ceasing to the LORD who can heal all of our ailments. I am committed to pray for you and your family. I had no idea you were going through so much. My love and hugs to you! Dotty

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  2. Karen,
    Thanks for sharing. Your messages are more powerful than you may think and your ability to handle these very intense situations with grace is something most of us can not do. You have been set up to deal with this since the day you were put on this earth and you are a very special woman, mother and wife. Take Care!

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  3. It's good to hear from you Karen. I had been wondering how you had been doing. Praying you get better soon.

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  4. Karen! My Best friend has been suffering from this same disease for almost two years, PLEASE email me!!! ginapsalm119@gmail.com

    xoxo

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  5. I am so sorry to hear all of this. I'm praying they figure this all out and you get better soon. Hugs!

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  6. Karen,
    Mary and I are praying for you, anthony , and your kids! We pray you get better soon!

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  7. Karen! I haven't been keeping up and I apologize. My heart is heavy for you. I cannot imagine how scary this must be and I'm sure lots more has happened that I've missed. Always thinking about you and will keep praying. xo

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  8. Mrs. K., it's so hard to know that you're going through such difficult physical experiences. I do love you my friend. As I read through your experience I had to scroll back up a few times to look at your wonderful face. You wear the most fantastic smile. Your smile tells us to stay calm and continue loving you. It tells us that no matter how drab a day might be, without love it would be worse. And it also tells us that because of the love you give and get that 'You've Got This!' It's obvious that Anthony and your beautiful children are always right there for you. Thank you for reaching out from your pain to us to help us understand how you and many others are enduring such an awful disease. When you need me, call. I've always felt that God has blessed me with having you as a friend.

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  9. Karen you are a rockstar! Sending you lots of hugs and lots of prayers.

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  10. I'm so glad I clicked over to check in with you! I'm so sorry to hear that you've been going through all of this, and I know it must have been really scary! Just know that I think about you and send a little prayer up for you each time I see one of your beautiful photos on Instagram. And I will be praying for you right now! Sending lots of healing prayers and love!

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  11. my nephew has a something called Hirschsprung's disease...he has a picc line from time to time ... no fun friend ... no fun... but again I love your positivity!

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