Severe Pain

[colormist]

Over the past 6 (or so) months, I've been having bouts of severe pain. It usually starts toward the bottom of my sternum and radiates outward. I ended up going to the ER for it about a month back because it is so disruptive. The ER didn't know what to do with me and suggested I visit a physician.

Last night, the pain returned while my husband was at work. The symptoms I'm having are very similar to a female heart attack. The ER thought they might be gallbladder sludge or might have something to do with my elevated liver enzymes. I'm not sure if the ER ruled out a heart attack.

I did notice something new with my symptoms last night, though. At around 8pm I was starting to get hungry and realized I should make some dinner. I also was feeling like I might be on the border of having another pain attack if I ate anything--but my blood sugar was dropping rapidly and I needed to eat something. I made quesadillas with fat free cheese. I was hoping that sticking to a fat-free diet would belay any gallbladder related pain attack.

Two hours later after dinner, I felt a tight-heavy feeling in both kidneys. They felt "thick". I commented as much to my spouse as he was leaving for work. A half hour later, both my kidneys started to hurt and were sensitive to pressure. Then the pain went to my chest. My heart was racing and beating hard enough that I could see my hair move with each beat. The pain lasted for three hours. Eventually I went to the the bathroom to urinate and the pain subsided. My urine was approaching a brown color. I spent the night alternating between shivering cold and burning hot. My extremities kept feeling goose-bumpy. Not exactly numb or tingly, but not normal either.

Backing up a little. Two days before this attack, I had went with my husband to Moe's for tex mex. I got a naked burrito (no tortilla). The rice tasted strange. I also grabbed some salsa verde and had a very, very, very small amount--like 1/32 of a teaspoon. I didn't feel sick that day or later the next day.

Backing up even more to my bout of pain a month ago. Two days before that attack, I shared a snack size bag of Funyuns with my dog. Funyuns have a small amount of sugar in them.

I'm not sure if my pain is directly related to HFI and the ingestion of fructose, but my follow-up appointment with my doctor is tomorrow. I wanted to share this information with everyone while it's fresh in my mind just in case it IS related to HFI.

[Tammy]

This sounds alot like something we went through with Regina a few years ago. It ended up being blood clots. We were to the point of they were sure it was her gall bladder when she clotted off a main line and ended up with a large part of her intestines removed.
It was never proven to be related to her HFI, but Fred also has clotting issues.
Just something to keep in mind and maybe have checked.

[charlie]

Sorry to hear you are having problems. I assume they have ruled out pancreatitis?
Hope you sort it out soon.

[colormist]

The only thing they've really ruled out is that I don't have kidney or gall bladder stones. The ER doctor did seem to think I might have Gallbladder sludge, but I'm not sure how that would show up on an ultrasound.

I wrote down both pancreatitis (though I don't think I have a fever) and blood clots. I thought maybe the latter part of the attack might have actually been a panic attack--but I'm not sure if you can get those while you're sleeping. The fact that both Regina and Fred have had a similar experience makes me a bit more concerned that it might be blood clots. Were they located over by the kidneys or solar plexus region, Tammy? My mom is actually a vein ultrasound lady, so maybe I can get her opinion.

I'm never quite sure how to approach visiting a doctor. Every time I've went in in the past, I walk in and say "I have X" and they say "let's check!" and usually say "are you sure you aren't pregnant?"

[Tammy]

Regina completely clotted off her splenic vein. Which then backed up the blood flow to her intestines. Which in turn clotted off. When they tried to put a "filter" in so they wouldn't break off and go to her lungs or heart, Her IVC (inner vena cava) was so full of clots they couldn't put the filter in. They tried from her neck and also from her groin. Her legs were also filled with small clots.

They also found several veins in her abdomen that had clots that were already in the stage of being reabsorbed. These were probably ones that had us at the ER on previous visits.

She didn't have any kidney pain, but since she had clots everywhere, it could have just as easily been there. She went for a month or so with pain in her "side". Off and on pain. We made a couple of trips to the ER, and then it would subside. That's why they were sure it was Gall. It was actually while we were at the ER and they were setting up an apt for monday to have her gall looked at that she filled the toliet with blood and they said - whoa - something beside gall bladder is going on here.

That was 2005. She is now on a blood thinner and all is well.

I remember at the time I researched it and found past cases of others with HFI that also had clotting issues, but it was never linked together.
Hey Fred, do you happen to remember where I found that?

[colormist]

Fred emailed me the details about his issues with clotting. I'm really hoping they have a solution for me and am excited for my appointment today. Avoiding eating food with fat and fructose yesterday helped. I didn't have an attack, but I did have twinges of pain when I moved certain ways or suddenly. I wish I could have ate more food, but I was too scared! I will be SO happy to eat without fearing pain!

[colormist]

Doctor appointment went well! My doctor is awesome! I shared all the information I had gathered about my pain. I also brought copies of my letters from my geneticist and my HFI lab results. She was really excited about learning about HFI.

The good news is that it's definitely not pancreatitis and I think she ruled out heart disease.

She read off my liver tests from the ER. Three of the four tests are elevated. One result has a normal number around 16 and my test read 600+ (not a typo). I wish she had given me copies of those test results, because I'd like to share them with everyone. I might be able to pull the results from their website.

She still thinks my gallbladder is malfunctioning, but she was open to checking for blood clots.

I also have a fever 100+ (which I didn't know about) and a heart rate at nearly double the average resting rate. So if the lab work does come back as alarming, then I might have to go to the ER again.

I'm having an ultrasound done Monday morning to check out my upper-right quadrant. I'll ask to see if they're also looking for blood clots.

[colormist]

Got my lab work back! I also got access to the ER lab work from last month and I thought I'd share for prosperity. I will probably also share these results on my blog, just for public reference.

Here are my results from the Hepatic Function Panel and Gamma G/T:

Component	Standard Range	Feb ER Lab Results	March Lab Results
ALBUMIN	3.5 - 5.0 g/dL	n/a	3.9
BILIRUBIN, TOTAL	0.3 - 1.3 mg/dL	n/a	0.4
ALKALINE PHOSPHATASE	<150 U/L	237	140
AST (SGOT)	8 - 41 U/L	547	54
ALT (SGPT)	<55 U/L	473	120
BILIRUBIN,CONJUGATED	<0.3 mg/dL	n/a	0.2
TOTAL PROTEIN	6.4 - 8.3 g/dL	n/a	7.4
GAMMA GT	7 - 50 U/L	606	246

Some numbers are still high, but clearly going down very quickly. I think I would like to see my results from a healthy day. Both results were taken after having a reaction to ingesting fructose (I'm still not certain if my pain is related to fructose--if it is, then my diet just got a lot easier to manage). The ER visit was 2 days after ingesting fructose. The March visit was 4 days after a ingesting fructose. I'm not sure on the amounts of fructose in what I ate, but I think they were both less than 2 grams.

[colormist]

More followups! Looks like they're going to take our my gallbladder. My mom also had her gallbladder removed and my sister is having complications right now. My doctor is doing a LOT of diagnostics, just to confirm is not something related to HFI (or that HFI isn't mucking up the results). My next test is a HIDA Scan. This will, undoubtedly, cause me one of my severe pain issues if this is my gallbladder that's causing me problems.

My doctor did seem concerned about the reports of blood clots with people with HFI, so she's putting me on a birth control that does not cause an increase of clotting.

[charlie]

Let's hope they don't keep you waiting too long. The operation itself is pretty straightforward these days so lets hope it solves the problem.

[Tammy]

I also had my gallbladder out years ago. Even back then it was pretty simple and they have come so far now that I'm sure you'll be glad you had it out when you can eat again. Crossing my fingers its soon!

[colormist]

Sounds like it'll be happening next month. Not soon enough, clearly, but I'll be happy to have olive oil, cheese, and potato chips again.

[colormist]

Small update!

I'm having surgery next Tuesday (4/7) to remove my gallbladder. It's not producing bile and I'll be happy to eat again.

I did have a bit of realization while i was talking to the 20th person about my history with my gallbladder. My recent attacks were all happening 2 days after ingesting fructose. At first, I thought maybe the fructose was causing the complication, but I realized today why the gallbladder attacks were only happening two days after ingesting fructose.

Two days after eating fructose, hypoglycemia sets in. I have a more difficult time maintaining my blood sugar. The cravings and binge-eating sessions start. For some of us, that means eating saltines or drinking milk, but for me that means eating potato chips--which are high in fat. Of course, I don't eat a normal portion size, I almost eat an entire bag if I don't get control of my cravings. A handful of chips would have been okay, but not half the bag.

I did find some low-fat puffed potato product at the grocery the other day, so I've been devouring those instead.

[Tammy]

Great news on getting a date! And YAY for being able to eat again!!!!! And also interesting on putting that together as how HFI affects everything - even when you don't realize it is. hmmmm.

[colormist]

Surgery went well. I was such a normal, healthy patient without any previous surgeries or medications that they decided to use me as a demonstration to the students in the school. I've never been called normal or healthy so often in my life! Every time they'd ask "are you healthy?" I would say, "that's what they keep telling me..."

After the surgery, I ate the crackers I brought with me and swallowed a percocet. I have never taken narcotics before, so I didn't know how I should feel. I almost vomited right there and then several times. The crackers and water were fine going down. They didn't ask me how I felt on the drug, they just hustled me into a chair and wheeled me out of the building. I continued feeling very nauseated, burning stomach pain, and ended up vomiting later that evening. You do not want to vomit after having stomach surgery. I couldn't sleep. It was about 3am when my mom gave me 2 extra strength tylenol instead of percocet. Finally the pain dulled enough that I fell asleep for two hours.

When 8AM rolled around, my mom called my surgeon every hour until he called back at 3PM. He said he wanted to give me a new medication that would help, but that it had sugar in it. I declined that medication. He then instructed me to take 2 regular strength tylenol every 4 hours and 3 ibuprofen every 6 hours. Two hours into that regiment and I was sobbing and crying in pain. (You also do not want to be sobbing when you've just had stomach surgery.) I couldn't move. I couldn't even roll onto my side. My husband called the ambulance.

At the ER, I had a fever, fluid in my lungs, my lungs were starting to collapse, and I had the start of pneumonia. They gave me Tylenol3 and some breathing instructions. They waited to see if the Tylenol3 would work--it did. We got back home at 2AM and I was finally able to change my clothes and go to the bathroom.

I'm feeling better now. The day I went into the ER was my birthday. I slept that entire day after the ER.

I'm not sure if it's the fact that I already have an iffy constitution from HFI, the fact that there might be something unsafe in percocet, or the fact that percocet causes nausea. Why would they ever give someone with stomach surgery a medication that causes nausea? That's like giving someone with lung surgery a medication that causes a persistent dry cough.

Anyway, I'm better today. I'm even off the Tylenol3 and just taking regular Tylenol now. I'll be very happy to be back to eating all those deliciously fatty dairy products here soon!

[Tammy]

Oh NO. I was hoping you had an easy time of it. Guess that didn't happen. I don't like percocet. I don't like the way it makes me feel - but nothing like you just went through. I just feel very sleepy and drugged out even after it wears off. I did have a different pain killer one time that caused me to vomit after my hysterectomy. You don't want to vomit after that, either. In my case, it was in an IV pump, so everytime I would vomit, the nurse would hit the pump to make me feel better. It was my brother to realize the connection of that was what was making me sick. You gotta love hospitals, huh?

I wonder if it was the percocet (which it certainly could have been) or something in the anethesia that started it all.

Well at least they didn't try to make you eat THEIR crackers.

glad you're better today.

[charlie]

Oh, so sorry to hear it was rough after, that can't have been pleasant. Hoping you continue to recover well and get back to "normal" life, being healthy.......

[tummyache]

I am so sorry to hear of your very tough time following surgery. Sure do hope you are feeling well soon. No one should have to go though what you went though! Can't believe the surgeon took so long getting back to your Mom when she called to tell about your distress. You are so brave! Best wishes for a speedy recovery.