Marina’s Story – 14 Year old NAFLD patient

I met and started talking to Darlene who is Marina’s grandmother after she found my blogs about my daughter Megan. I have asked her to share the story of her grand daughter Marina.

It was Nov 1. 2012. Marina woke up for school and said her stomach hurt her. She generally never gets up at 5 am and for her to wake me up that early, I knew it must hurt her very badly because she is not a complainer.
She showed me where it hurt and it was like the top right side of her abdomen. She started getting ready for school and she was still in a lot of pain..so much so that I took her to the urgent care clinic instead of waiting to call her family doctor’s office. At the clinic ,they took Marina right back and drew blood, after examining her and with her being in so much pain, they reviewed the blood work wnich showed her (* white blood count was way off) they actually called an ambulance to transport her to Children’s Hospital.

When we got to the hospital…they hooked up an IV…started drawing blood and she was in so much pain she was crying. They did a CT scan and a Sonogram and took her right to the ICU. Her blood pressure sky rocketed..her blood count was way off…and she couldn’t stop crying about the pain. I was trying to act calm on the outside to keep Marina calm, but I was so worried …thinking…let this be her appendix so it will be solved quickly!

That would have been to good to be true. They call in the Gastroentologist and we were told the scan results were in and she had pancreaticitis. Marina just had to stay for a few days in the hospital …keeping a good eye on her in the ICU. No food to give her pancreas a rest with just an IV and lots of pain medication. So, I could breath again… she stopped crying cause the pain medications were working.They brought a portable toilet for her to pee in because she was hooked up to monitors.She was dealing with nausea but didn’t throw up…her blood pressure was high but they said it was due to the pain. To me, she looked so uncomfortable from the pain the whole thing,then she goes pee and what the heck her urine was brown like coffee. I almost passed out but I am still acting calm on the outside..she was groggy and I calmly asked the nurse why is her urine that color? Oh that’s ok, its just that her pancreas is inflamed and it needs to rest. Ok they are the medical experts… so for the next 24 hrs..she continued to feel nausea she was still getting the iv so she could let her pancreas rest, still urinating brown ,blood pressure high but a little lower with drugs,she did not sleep much and I didn’t sleep at all.

So 24 hrs go by and the doctors came in to make their rounds. I asked all kinds of questions…like what caused this what can be done why is her blood pressure so high…why is her urine so brown…they answered all my questions and said her pancreas got infected…they don’t know how…these things happen… no med for it just no food to rest it and the pee is brown because the pancreas and liver work together and the red blood cells are coming out in her urine because the liver is not working correctly because of the pancreas being swollen…its fine.

So two more days went by and she still was on pain medications but it was hurting less everyday…her blood pressure was returning to normal and her pee was a light brown….so they moved her to a regular room and had her start in liquids… they gave her soda POP…with sugar in it…coke, pepsi,ginger ale, they gave her pudding, ice cream, jello and these are medically trained doctors?. So I not knowing they were poisoning her liver, I was so happy Marina was holding it down. So after a day of sugar galore, her face started turning red,then purplish. Again I was calm on the outside falling apart on the inside. I Go and tell the nurse and they see her blood pressure rocket, her pain was coming back. They rush her back to the ICU. What’ going on?? I go to an empty room to call my daughter long distance to tell her help!. I was so weak inside my daughter (marinas aunt) and my son in law and my daughters best friend get on their computers they are searching reading, looking, talking, trying to save Marina.

I am sitting in marinas ICU room when a nurse…now this is extremely important to remember..THIS NURSE who was taking care of marina that shift…commented to me…who by the way NOT ONE DR. OR SPECIALIST SAID A WORD ABOUT to me…her liver enzymes are so high. So I freak out inside what? her liver enzymes are so high I am thinking no doctor or specialist said that to me!!! As far as they were concerned it was all only about her pancreas So now back home they start thinking maybe its not her pancreas maybe her liver is causing her pancreas to be sick!

Now keep that comment from my daughter’s friend in your mind along with what the nurse said about marinas enzymes
So I see my precious grand daughter is getting so sick again after she started getting better!

I go to the room where marina can’t hear the desperation in my voice and tell my daughter listen to this a nurse just said to me wow her liver enzymes are so high. I said why would she be concerned about that,all along the doctors and other nurses were saying to me…no its her pancreas, the other organs are just helping with her pancreas. So my daughter says mom let me talk to her doctor. And I took my phone and went and found Marina’s doctor and told her to please explain to my daughter about marinas health… 20 min the doctor hands me back the phone and my daughter says to me MOM..WHY ARE YOU TELLING US COMMENTS MADE BY A NURSE…GETTING EVERYONE WORRIED THAT MARINAS SO SICK..HER DOCTOR SAID HER LIVER IS FINE she just needs to rest her pancreas everything is fine!

so I am numb am half happy, half thinking no she is back in the ICU, I am in a mind set of total confusion. I’m thinking about what the nurse said and I have marinas mom stay with her and I went to a computer, typed in liver and Fructose in Google searched fructose, sugar, high fructose corn syrup, every thing I typed in about liver..dark urine pain. I start seeing all this about children…fructose ,liver, dark urine and I’m like what??. So I send all these links to to my family. My son-in-law said get Marina out of that hospital something is not right!

marina was so sick when she came here they didn’t put anything in her body meaning no sugar because they wanted her pancreas to rest and it was working her blood pressure went down her blood count was getting better her urine was lightening with every pee. Then since she was getting better they took her out of ICU and gave her all liquids and soft food high fructose pudding high sugar jello, sugar in chocolate milk The comment stood out in my mind….maybe its her liver that’s making her pancreas sick I said I am taking her home…The doctors said you can’t, no said marinas mom! I said OH YES I CAN I AM HER LEGAL GUARDIAN I took her home and put her on a strict no sugar diet and my family and I read everything about fructose sugar liver and by the next week when they did blood work…wow….was her body getting better not much pain at all pee turning yellow not brown no nausea, sleeping good Since then we have been very on top of marina walking for exercise..every day she has to walk… he set her up with drinking watered down cider vinegar every other day….and on the other days she drinks a spice with water… turmeric. Every label is now read for hidden ways of saying sugar!

Marina is an honor role student and is doing very well since we took her health into our own hands! Doctors are not taught enough about this disease and they don’t look for it and assume its other things. We blindly trust doctors with our lives and sometimes you just need to listen to common sense. If the sugar brought all symptoms back then there is something to consider getting rid of for your body!

This disease is hitting kids as young as 2.

Do not ignore it, if 1 in 3 north Americans has liver disease someone you love is dealing with it before it starts showing nasty symptoms like this.

Join our group on facebook https://www.facebook.com/groups/fattyliversupport/

Follow us on Twitter @fattyliverhelp

And join our website with patients helping patients at http://www.reversefattyliverdisease.com/

Advertisements

One thought on “Marina’s Story – 14 Year old NAFLD patient

  1. thanks for sharing, I agree we put too much trust sometimes in the clinicians/physicians and sometimes we just need to listen to our very own bodies over all things…when I break a bone or I get dehydrated I let them set my bone or give me IV fluids but I also do my own research and do my best to care for and listen to my own body as it tells me what it does and doesn’t need if only I will listen 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s