Saturday, July 21, 2012

A new chapter in our lives...gastroparesis

Hoping that typing this out will serve a couple purposes, 1 to let everyone know what has been going on and 2 some therapeutic release personally.

The start of unfun symptoms
So over Spring Break we went to DC to visit some family and one morning in particular we were supposed to go to the National Zoo but I was feeling very sick and ended up vomiting. I felt guilty for not feeling well so after vomiting I ended up getting dressed and we went after all. Fast forward a few weeks into April and I remember the day before my birthday on April 13th I had an all day workshop to go to for school but that whole week I had been feeling very nauseous every morning without fail. I didn't want to miss so I went and ended up making it through the day.

I was still probably going to have the condition but menudo probably sped it up a bit...
My mom has spoiled us with a tradition of letting us choose any meal for her to make on our birthdays. So this year I chose menudo. Saturday morning I woke up feeling good (which was a welcomed change) and started eating menudo. I didn't eat anything else that day, and over 3 meals had 5 bowls of menudo. That night and especially the next day I was in horrible pain. I knew the following Monday was my last day of classes so I decided to tough it out and got through Sunday. Monday morning was even worse. There was no way I was going to tough it out and I knew something was wrong. My wife and mom convinced me to go to Urgent Care (I was afraid that if I went to the ER I would be admitted and miss my trial that night) so I did and I was diagnosed with gastritis (inflammation of the lining of the stomach) but even as I was diagnosed "due to extreme stress" I didn't really believe this was it. The worst part of this day was that Mondays that semester I had 3 classes and was at school almost 12 hours. My last class on Mondays was Trial Advocacy and this last day of class we were having our trial. This class was pass/fail and I had a couple key parts in the trial as well as our 2 exhibits. I felt like I really needed to be there so I missed my first two classes and in horrific pain took a 3 hr nap. When I woke up I felt very nauseous and dehydrated. I went to the trial and toughed out the 3 hours to make sure I passed the class. I went home and the next morning the real "fun" began.

Don't go to Banner Gateway...
April 17th. I woke up again in horrible pain. By this time I had been vomiting every morning at least a few times. This day was no different. Sometimes taking a warm shower was helpful so I ended up borrowing my parents' shower and at a low point remember eating a jell-o while showering to try and hold some food down and then curled up laying on the floor of the shower for about 20 minutes because I couldn't take the pain. Finally I was stable/not so nauseous that I could handle Steph taking me to Banner Gateway ER. They couldn't figure out why I was vomiting so much and ended up admitting me to the hospital. The GI dr didn't have time to perform a scope on me for almost 4 or 5 days that I was in there. After x-rays, cat scans, blood work and more tests they said NOTHING was wrong with me! I could not believe that after vomiting almost 100 times this past week that nothing was wrong with me. I was desperate for them to find what was wrong and I think they were too. Even while I was in the hospital my symptoms were not subsiding. I was still vomiting to the point that all I had left to vomit was bile. It took my parents coming to visit me one especially terrible morning to see me in terrible pain and then complaining to some supervisors before the staff was willing to give me medication strong enough to manage my pain and symptoms. They did a different test and found out that my gallbladder was only functioning at 12%. They said because of where my pain was it was very likely that removing my gallbladder would fix the pain and I could get on with the rest of my life. I was all for it. My gallbladder was removed and I started feeling better. Another day later I was set to be discharged. That morning the GI dr.'s rep came in and told me that they could scope me that night and I needed to immediately start fasting to prep for it. I was feeling well and figured my problem was over so I told her to leave. I went home and started trying to recoup from gallbladder surgery. I ended up having to take incompletes in 4 of my classes from the Spring semester because I was in so much pain and dealing with recouping from the surgery (ASU Law has been amazing in working with me through all of this). My healing from the surgery was going well but slowly over the next few weeks the old symptoms of extreme nausea and vomiting started coming back. At first I figured it was just part of the healing process from the surgery I had. I ended up at my primary care one morning especially nauseous and she told me I needed to get to the ER right away because my symptoms were not to do with my surgery.

Apparently I didn't learn my lesson...
I went back to Banner Gateway and dealt with one of the WORST doctors I have ever met. She was extremely rude and unsympathetic. She basically told me nothing was wrong with me, that I was not having an emergency situation so she was going to have to send me home after giving me some basic fluids. I refused the fluids and told her to discharge me immediately. I went home, took a nap and when I woke up my wife and mom again convinced me to try going back to the ER.

Experience with a great hospital 
This time I went to Scottdale Osborn which was one of the better choices I have made so far. The doctors in the ER were very sympathetic and legitimately tried to find out what was going on. I was admitted because they didn't think vomiting uncontrollably was normal after all. While their facilities are not as nice as Banner Gateway and sometime you have to share a room as I did that night, the care I received there was second to none. The worst part of this experience was when they gave me the drug Reglan in the ER. Reglan is used to treat people with extreme nausea. While it almost instantly got rid of my nausea, within 2 or 3 minutes of taking the medicine I started freaking out. I felt like I needed to get out of there. I wanted to rip out my IV and just start running. Stephanie had to get the nurse who gave me some Benadryl and eventually I calmed down. Its called a neurological side effect that they describe as "wanting to crawl out of your own skin." Horrible feeling! And once you have a neurological side effect you can no longer take the medication. If I were to continue taking the medication it would lead to Parkinson's Disease-like symptoms. The first night I was there I had to share a room with an old man who like flirting with all of the nurses and wore no underwear. I definitely saw more than I bargained for a few times as he went to the bathroom but I paid him back with the terrible sounds of my vomiting. The next morning Stephanie came to visit me and through the curtain that separates the patients in the shared room the old guy yells to Stephanie, "Your husband is REALLY sick! He threw up 16 times last night...I counted!" hahaha The staff decided with my terrible vomiting sounds that it would be best if I had a private room so I was transferred that day to my own room.

Finally some answers/Help/Bad news phone call
More tests were ordered and a GI doctor who was willing to do a scope on me finally was able to provide some answers. First he said I didn't need to have my gallbladder removed. He explained that a gallbladder will function at a low level because that is all your body needs it to function at. There is really nothing quite so terrible as hearing that you had a surgery FOR NOTHING! He did a scope on me and ordered a gastric emptying study where they had me eat radioactive oatmeal then over the next 4 hours go back to radiology and take pictures of my stomach to see what the oatmeal was doing in my stomach. After 4 hours I could see the oatmeal was still just sitting in my stomach (which is not normal).  While it was nice to finally find out what was wrong with me, it was kind of a situation where the good news is we know what's wrong but the bad news is what is wrong. I was told that unfortunately treatment for this condition is not an emergency procedure so I would have to go home and follow up with another GI dr in my network.

During this particular stay we were also in the process of moving from my parents' house back to our own place. I hate relying on other people for help but I was very humbled and grateful to family who helped so much and to members of Riverview Ward. I felt so bad leaving all of this to my wife to handle but again it goes to show how lucky I am to have her in my life.

An especially low point of this stay was one day my family was helping my wife finish moving some stuff to our house and I was already feeling guilty because my mom's mom was also in the hospital and I felt bad that my mom was not able to be spending time with her mom. I got a phone call from my brother letting me know that my grandma had suffered a heart attack and passed away. I still cannot adequately describe the guilt I felt and how sad I am that my mom didn't get to spend the last moments of my grandma's life at her side, instead she was busy helping us move because I was stuck in the hospital. Sorry Mom...

Fun facts: There is no cure. About 1.5% of all Americans suffer from gastroparesis. Of that number, the majority of people plagued by this condition are overwhelmingly women. Of the people who suffer from gastroparesis, 80% are given some relief by the drug, reglan. In a funny way its kinda weird to calculate how little of a chance I had of getting this and that the only FDA approved drug would not work for me.

Some common symptoms:
  • There is a feeling of nausea.
  • Pain in the upper abdomen
  • Vomiting
  • Feeling of fullness
  • Feeling of Heartburn
  • Weight Loss
  • Loss of Appetite
  • Bloating of the stomach
  • Abdominal Spasms
  • Fluctuation in the glucose level
May-mid July
Since being discharged the first time I have been back to the ER 4 times because of symptoms getting out of control. The GI dr I saw at Scottsdale Osborn said that with the advanced, severe gastropareisis I have, that my best bet would be to find a place that does a gastric pacemaker where they insert a pacemaker-like device into your torso and attach the electrodes to your stomach to force it to pump properly. There are only 3 places in AZ (Mayo Clinic, UofA, and 2 drs. out of John C. Lincoln) that perform the surgery. I went and saw another GI dr in my network back at the beginning of June and he agreed that I need the gastric pacemaker. I am still dealing with nausea and pain everyday and I have lost about 20 lbs. since it all started. I ended up finding 2 drs out of John C Lincoln who perform the surgery AND take my insurance. I have been patiently waiting to get a referral to see them and get the pacemaker surgery done because I am now forced to take about 6 different medications to keep my symptoms under control. I have had an amazing opportunity to be interning this summer and I feel like I am wasting the chance because of missing work due to these symptoms. 

My wife is wonderful 
The last few weeks have not been easy. Since getting out of the hospital Stephanie has been amazing. She has been learning and reading up on all things gastroparesis, how to cook, what to stay away from, and general tips. She does this all while juggling her MBA program, taking care of Harley, and me on my really bad days (which seem to be outnumbering my good days). I have been having ups and downs trying to deal with the reality that I will be dealing with this condition the rest of my life. So many things are up in the air. We have read about different people's experiences with gastroparesis and there are so many varying stages that its hard to fully grasp the implications of this in my life and our collective lives as a family including putting off the adoption process that we were so happy to have started (though that's a whole other story). Some people have it "not so bad" like me where we can still eat basically normal food just in smaller amounts more frequently throughout the day. Some people are forced to switch to all-liquid diets, and the worst off seems to be people who have to use feeding tubes to survive. I also have to say how grateful I am to the rest of my family and Stephanie's family. Everyone has been so helpful I honestly can't begin to thank everyone for all the kindness we've been shown.

Breakdown & Viewer Beware...Watch at your own risk!!!
About a week ago on my brother's birthday, Stephanie was telling me about a youtube video she saw about gastroparesis that was really sad. She then quickly stops herself right as she's about to show it to me and says "actually everything I've read says you shouldn't watch this kind of stuff, its not good for you." I laughed it off and said just play the video...
By the end of the video I was crying hysterically and had to walk out and give myself some time to compose myself. It wasn't that the video was horrible or anything it was more that it made it real for me. It scared me to think that these are real possibilities for me. My biggest regret with this dumb video was that I made my parents watch it the next day and it really bummed them out. They weren't even able to sleep that night after watching it.

Things that make me laugh
Random. As I type this in the background I have the tv on and 2 commercials that I absolutely love have come on and really made me laugh and put a smile on my face. I love funny commercials. These two happen to be my current favorites. For some reason Steph really hates the first one and that I laugh hysterically every time I see it! haha

My most Recent stay @ Scottdale Osborn
I have been dealing with nausea and pain every day and each day for the past 2 weeks has been progressively worse. When I first got out of the hospital I was able to manage, albeit drugged up, fairly well. The last few weeks have been horrible. At the beginning of all this I found out that somethings delayed and helped symptoms like showering with really hot water or taking a bath and just soaking in hot water. Even with trying these things along with the medications I take every day the past two weeks has been progressively worse than the last. It got to the point where I would take medication both anti-nausea and pain and it would take 3, 4, or 5 hours before I would start to feel some relief and I was back to vomiting basically every morning. This past Tuesday morning I couldn't get any relief and I vomited blood twice that morning. Back to the ER! I was in horrible pain by the time we got to the hospital. I stayed in the hospital basically all week had another scope done where the GI doctor saw food still in my stomach over 12 hours after the last time I had eaten! 

He still says I need the gastric pacemaker surgery and thought about doing a jejunostomy feeding tube (J-tube) which is a surgically inserted tube through the abdomen into the small intestine. For now we are not going that route but it may be readdressed when I see the other GI specialist on Monday.

Some good news: I was so excited that I got the referral to see the dr who performs the gastric pacemaker for this coming Monday!!! 

Bad, bad, bad news. Did I mention I got some BAD news???: I was basically told that there was nothing else they could do for me and I needed to be discharged once again with stronger meds this time until I can do the gastric pacemaker surgery. Also found out that most insurances do not cover the surgery as it is still commonly considered experimental. So I googled: "gastric pacemaker cost" and to my dismay found out that just for the pacemaker it can cost over $20,000 and the surgery all together can cost as much or more that $70,000!!! I don't know what to do at this point. I have my appointment with the GI dr. who does the surgery I need on Monday so I am trying to stay positive and hopefully she will have some ideas on how to get the insurance on board for this medically necessary procedure. 

Now we're all caught up!
Wow if you're still reading this! I haven't blogged in a couple years and as long as this one is I may not blog again for another few years. Anyways at this point I am starting to feel nauseous and sleepy (its 1:45am) and I'm curious to see how the new, stronger meds are going to work. I am hoping to be able to make it to work on Monday and excited for my gastro appointment on Monday. I am really grateful to all my family and friends who have helped me so much to this point. My wife, parents, and siblings are all amazing. Stephanie does so much for me everyday. I don't know how she does it all. My parents are always there for me and willing to do anything for me. My brothers are always doing nice things like Isaias spending multiple hours mowing our yards and Isaac spending time with me or just talking to me on the phone. I am bring to be positive at this point but its not always so easy. Hopefully the new meds work and hopefully I get some good news on Monday. 


I.Ortega said...

Love you bro.

Katy said...

Wow, Israel, you are such a trooper and your wife sounds sooo amazing! I sincerely hope you hear good news on Monday. Let us know how we can help! Maybe we could start a fundraiser?? Good luck on Monday, friend, let us know how it goes!

Isabella Ortega said...

We are praying for you to heal and get this surgery done. I can't imagine how difficult your life has been lately. You're lucky to have Stephanie taking care of you and such a good family. Please let me know if we can do anything for you. I hope you can be better soon.

Jeanie said...

Wow you are an amazing man.
My family are friends with your in laws and only knew you were ill. What you are going through just boggles my mine. Yes you are lucky to have Sheph by your side. God Bless and we pray you hear answers to your question that you are praying for.
Gods love
the Crenshaws

Delight said...

Wow Israel....Thanks for posting an update. I had heard things weren't good, but I had no idea how much you were really going through. You'll be in our thoughts and prayers. :)

Justin and Camille said...

Our deepest, heart felt sympathy and prayers go out to you and your family. How can we help? (should I have Justin beat up a couple doctors from your first doctors visits) ;) We love you guys.