14 East All Over Again...

Nov 2nd... I remember it like it was yesterday... I'm re-admitted to Northwestern... It was all happening all over again... Weight-loss, nausea, vomiting, not tolerating anything by mouth. What was happening? How could this be happening? I thought everything was better. The tube was out. Why again? So many questions still unanswered, yet here I go thru this all again.

I was back on 14 East admitted as a patient. I'd be assigned a medicine team to follow me on a daily basis, while Dr. Hirano would continue to handle my care along with his GI colleagues. There were a few new tests that they had decided for me to undergo. In the meantime, the first thing that needed to be done was to replace the feeding tube in my nose so we could at least begin nutrition. So, I underwent my 9th endoscopy of the year, the tube was placed, some new biopsies were taken, and results would be normal.

One of the tests that I was to undergo was a HIDA Scan of my galbladder. Supposedly your gallbladder can be a cause of nausea/vomiting so this seemed like a pertinent test. So, one morning I remember Liz (my nurse) coming in to tell me that I'd be going for not just 1, but 2 tests this morning. She told me the HIDA Scan and then I was going to Ultrasound for an ultrasound of the gallbladder also. So, sure enough, transport comes later that AM and takes me away.

1st up was the HIDA Scan. What they do is inject you with some radioactive stuff that they watch react with your gallbladder and then take pictures for 2 hours. So you are forced to lay there for 2 hours (feeling nauseous as can be) and they won't let me have Liz come down to give me some Zofran. What a nightmare. Finally the 2 hours is over. But still no Zofran until after the Ultrasound. So, transport comes to nuclear medicine to get me from the HIDA Scan, takes me to the Ultrasound, then back up to my room in 14 East. Liz greets me with 4mg of Zofran thru the IV and I am relieved for the time-being. Results would come back normal on both tests of the gallbladder. What was next???

It was decided at this point that there wasn't really anymore necessary tests. It was still inconclusive as to what the diagnosis really was. For the time being it was Gastroparesis, but that was just a name to help classify my symptoms. I knew what was next. I had been through it before. There was only 1 answer. The feeding tube needed to be placed again by Dr. Nagle. Same surgery as before. Same surgeon. Same feeding tube.

I had been thru this once, but to go through with it again was even more difficult. I knew what was involved this time which was a positive, but still the fact that I was going to be put back on the feeding tube more permanently all over again, after just months ago thinking things had gotten better. However, I kept reminding myself that I had been through this once before, I would conquer it yet again. Yet, this surgery would prove to be different...

Back to Work... and Eating ?!?! But Then...

So I go back to work and am back to full-time... Feels nice to get back to reality and normalcy...

As the weeks go by, I slowly am asked by the GI team to start to increase my liquid intake. So, I begin to drink some Gatorade (slowly) throughout the day in addition to continuing the fluids and feedings thru the tube. After a few more weeks pass, we introduce some soft foods and light solids. All seems OK in small, small portions. So, as I continue to advance my diet, I also continue the feedings to maintain healthy nutrition. I'm back to Little Louie's for daily lunches (which for the most part consisted of Grilled Cheese sandwiches or Grilled Chicken Pita's). I love this place. Pete Weiss runs a quality establishment and is a great friend. It was great to be back to my routine.

The end of August is approaching now and Dr. Hirano decides that given my ability to slowly increase my diet and tolerate some things by mouth, that we would do 1 last test to see how things were moving motility-wise. So, the test is scheduled and remarkably my motility showed to be back to normal and working properly. I was ecstatic to hear the news. I was hoping this meant the end to the feeding tube. 2 weeks after the test was done, I go back to see Dr. Hirano and sure enough, he feels comfortable pulling out the tube. YES! I can eat (somethings) and can get rid of the tube. Sounded good to me as we hoped that this was it.

I'd find out after 2 months of no-tube and trying to drink and eat on my own, that in fact I was feeling some of the beginning symptoms again. Nausea, vomiting, it was all back. November 2nd I am re-admitted to Northwestern Memorial Hospital for what would be another 30 day stay...

Special Thanks... Home for a little and back to work...

My Parents... I couldn't have done those 31 days without you there each and everyday... I love you!
My Brothers... You 2 are both amazing... I know how difficult this was on all of us while you were away, but your calls and visits were great!
My Friends... Thanks for the calls, emails, visits, etc... It truly was remarkable to know I had that much support...
My Doctors and Nurses... Dr. Roth your daily visits were truly a source of comfort... Dr. Hirano and the GI team at Northwestern, Dr. Nagle and his team, thank you all for your care and treatment... Nurses of 14 East were amazing... I had them as friends as well as care-takers and so each day passed with their care and friendships... Nurses aides, special thanks to Lakesha, Judy, Ruby, and the rest of the crew...
My Rabbi's... Rabbi Petuchowski and Rabbi Conover, I can't thank enough for their endless prayers, and numerous visits...
A-Z Industries... Your continued support is truly beyond thanks at this point... I can't wait to return to work soon...

2 weeks pass... I recover and adjust at home... Then I get back into the swing of things by working part-time and then eventually full-time... Felt great to get back to some normalcy (as normal as it could be). I was on a diet of tube feedings and a little bit of liquid by mouth each day. No more Little Louie's for lunch everyday. But hopefully soon enough things would be back to normal...

Surgery Over... Recovering... Going Home!

So the surgery was over. The night after the surgery I was still quite groggy from the funky medicine they give you called anesthesia. That stuff is amazing how it works. Your awake, then your asleep and you then you're awake again. I mean good thing they know how much to give you so you do wake-up. I was obviously in some pain given the surgery, during which they placed the feeding tube, and also took full-thickness biopsies of my stomach and small bowel (which required a few extra laproscopic incisions).
For the next 2 or 3 days I was in some pain still from the surgery, so I was getting pain medicine from my nurse every few hours, in addition to plenty of Zofran (anti-nausea), and trying to rest comfortably and recover.
The day after the surgery, they would start to use this tube. I no longer had the tube in my nose (this was taken out during the surgery) and so I was able to begin to adjust to the different tube feedings that I would require. This would be my nutritional source for now. I was to get tube feedings for 12 to 15 hours per day, in addition to a few daily water hydration flushes thru the tube. I would also take a few different medications to help hopefully cure this forever. It took a few days to adjust to the feedings and get the hydration part of it right, but with the help of a nutritionist we were finally able to get the schedule right.
I'd spend 9 more days in the hospital as I recovered and continued to adjust to the feedings. I finally was discharged after 31 days. I was going home. Life would be different, but I was always a fighter and wasn't about to let this detour me. I packed up Room #1404 and said my goodbyes to all the people of 14 East who were both my friends and care-takers for these 31 days. Well-wishes and Goodbyes. I was going home (for now)...

Surgery on Deck... Day 20 @ Northwestern...

After giving me numerous medications and running numerous tests for the past 20 days, the decision had finally been made that for the time being, the best treatment was the surgery to place the feeding tube more permanently in my stomach to my intestine, rather than thru my nose (a little more attractive at least).
The morning after making the decision with the consult of family, friends, Rabbi's, and Dr's, I met the team of surgeons that would be involved in my case. Dr. Alex Nagle's nurse and co-surgeons came to see me VERY EARLY in the morning to see me and explain in brief about the surgery and when we anticipated it taking place. I was told I'd be on the schedule for the following day at 930am.
A little more than 24 hours to really reflect on what had taken place the previous 20 days and what was going to take place in the next phase of this process. A feeding tube... It was difficult for me to grasp the idea of having a feeding tube more permanently and relying on that solely for my nutrition as we continued to try and find the cause of these symptoms that had hit me so hard. What was my daily life going to be like? How was this going to affect my work at A-Z INDUSTRIES ? (This is a perfect opportunity to say THANK YOU to everyone at A-Z who has been behind me 100% thru this difficult time and times I'd encounter ahead!!!) When would this supposed viral-gastroparesis (gastroparesis is the paralysis of the stomach functions which causes a delay in stomach emptying and passing of liquids) reverse itself ? So many questions that would flow thru my head, that this day before the surgery was probably the most difficult of all to this point.
That afternoon after meeting Dr. Nagle's team in the morning, I was able to meet Dr. Nagle himself. He was an extremely nice guy who was extremely sensitive to my situation and was sure to re-assure me that everything was going to be OK. I asked him a few questions about the procedure and he explained it all from start to finish. I was re-assured by Dr. Nagle, yet still nervous for the next day's 930am surgery.
The night before the surgery I was sure to read thru my prayer book about healing and surgery, I met with the anesthesiologist and signed all the consent forms necessary for the surgery, and cried a little bit in fear. I slept very little this night (I think I watched "Knocked Up" and "Harry Potter" all night until the routine 6am blood draw that was my wake-up call) and was constantly thinking. The clock was ticking until the surgery.
My parents arrived the morning of the surgery around 630am (as they did for the entire 31 days I would be hospitalized for). I read my prayer book again. We talked and tried to not dwell on what was about to happen. I still shed some tears as 930am was getting closer. 945am and Transport arrives to take me downstairs to Pre-Op. As I'm getting loaded onto the cart to go down, my team of Dr's arrive to see me before the surgery. 1 thing you must know is that the Transport people don't wait for anything or anyone. When the patient is ready they take off. So my Dr's ran next to us in the halls wishing me luck as Transport, my family and I entered the elevator to go downstairs.
So there I am waiting in Pre-Op, for how long I didn't know. The nurse asked me a few questions and hooked me up to the IV bag, and told me that it should be within the half hour or so and I'd be going in. Time felt like it lasted forever. A half hour came and went. No action. The nurse came over to tell my family and I that they were still tied up in procedure and should hopefully be "closing" soon. At 11am Dr. Nagle's team came out to see me in Pre-Op. They re-assured me that all would be OK, and put the black "X" in marker on my abdomen where they would be doing the surgery. After that, the Anesthesiologists came out to see me. They gave me a nice shot of Valium to help calm my nerves. Then Dr. Nagle himself came out to see me and meet my family. He was so nice and re-assuring. I remember him vividly saying to both my parents and I, "I'm sorry that I have to do this surgery to a 27 year old, but it'll be my pleasure to take it out as soon as possible." I was ready to go.
I said goodbye and kissed my parents. And I was wheeled into the freezing cold, bright fluorescent lights known as the Operating Room. Here it goes. Take a few deep breaths of some oxygen and funny medicine and you're sleeping for the next 3 hours as the surgery takes place. Waking up extremely fatigued and in pain in the Recovery Room, where I'd spend a few hours before returning to #1404 for the night.
I got up to my room around 5pm. I saw my parents, my nurse and I was sleeping. It was over...

Tube Feeds Continue, But What for the Long-Term ???

So as the days passed and the CUBS wins added up, it had been about 18 days in the hospital and still no real answer as to what the cause of this whole episode could have been or how long it would even last. But the time was nearing where the alternatives were fewer and fewer and a decision was nearing as to what would be the long-term treatment plan.
I remember the day that the decision had to be made like it is just yesterday. Both Dr. Roth and one of his mentors, Dr. Ferreira, had come to see me late in the afternoon. They asked me about how I was feeling and whether I had been tolerating the tube feedings that I was getting. They examined me again. And then the talk started. They thought at this time the best course of treatment would be to under-go a Jujunectomy (a surgery in which they insert a feeding a tube in your abdomen that runs past your stomach and into your Jujunem). My mind was racing with both fears and questions. What did this all mean. How was my life about to change. Why was this happening to me. How soon were we going to do this. Too many things to think about, I break down in tears. My parents and I discuss what this all means that night and begin to brace for the future.
I'd be meeting the surgeon in the next day or 2 to discuss the procedure. Dr. Nagel would be the man performing the surgery with the high recommendation of both Dr's Roth and Ferreira. Life was going to be different, but I'd accept it and make it work...

What Would Be Next ???

The DR's decided that my next set of tests would be some CT Scans of the Brain and also of my Abdomen. So again, contrast was required, but with this handy tube in my nose I could avoid the drinking. I had both tests done and results were back and all checked out OK.
There were some things that my daily blood draws were showing with regards to a lack of Potassium so there were the dreaded daily Potassium "riders" that my wonderful nurse of the day would bring in around 10am each day. If you haven't ever had Potassium thru an IV, you are extremely lucky because Potassium burns like fire in your veins. Even though they mix it with a saline drip thru the IV you can still feel it... TRUST ME!!!

I'd like to take this opportunity to give a special thank you and mention to the entire staff of 14 East. I've never had such supporting care than I did on 14 East. From the nurses, to the nursing aides, to the maintenance and transport personnel, it was truly a pick-me-up while I was going thru such a difficult time. THANK YOU ALL 14 EAST !!!

More and More tests...

So the initial Endoscopy had shown that everything looked clear at the moment. The feeding tube was inserted thru my nose so I would begin to be re-nutritioned by that for now. For how long I didn't know, but there would be plenty more tests to be done in the following days.
I went thru a Gastric Emptying study 1st. I had done this 1-time before about a month earlier at Evanston hospital, but Northwestern insisted on re-doing this by their staff. So, here I was nauseous and still vomiting daily, and I am asked to eat Radioactive EGGS, yes regular eggs that are mixed with some radioactive chemicals. This is absolutely the worst test to do when nauseous since you then lay flat underneath a machine for 2 straight hours as these radioactive EGGS begin to breakdown in your stomach. This test studies how fast your stomach empties. About an hour into the test, I was so nauseous that my nurse was summoned to come bring some medication. Within minutes, Mandi had appeared loaded with Zofran for me to help the nausea. Thank You Mandi because I made it thru the final hour of the test. Then after it was over, I returned to my room, where the EGGS didn't stay in my stomach long. They ended up in the pinkish basin that was constantly at my side. So much for that test. I would find out the results a few hours later, and the study showed only a slight delay in the emptying. So the next day another new test.
I would begin this day with a Small Bowel follow-through. This examines how things move thru your bowel. For this test, however, a contrast was required. I was in a total panic that I would have to drink the Barium contrast. I couldn't even swallow and tolerate water, let alone Barium. So when it was time to start taking the Barium, in comes my nurse, Mandi again this day, that they would be injecting the Barium thru the tube in my nose so i would be spared the drinking of it. 15 minutes later, Transport arrived to take me down to Radiology for the test. I got down to Radiology and they explained to me the procedure --- They would 1st be injecting the Barium thru the tube, and then would be taking pictures as the Barium moved thru the bowel. They told me depending on how fast or slow it moved, it could take up to about 5 hours. Well, I got lucky, another test that shows everything is OK. The Barium moves thru and I'm back in my #1404 in less than 2 hours. Another day done, CUBS to watch on TV, and about 100 DVD's stock piled in my room to watch on my new mini-DVD player that my parents had gotten me to help pass the time (in addition to the bonus free Wi-Fi in the room).
Tube feedings would continue as the DR's searched for answers and planned the next set of testing...

Day 1 on 14 East...

It was May. It had been 2 months that I had been struggling with my symptoms. All I wanted was some relief and to know what it was that had been going on with my body. I was at Northwestern to see a specialist who focused on GI motility issues, Dr. Hirano. When I'd see him, I wasn't sure, but I felt better that I was at Northwestern to begin my care.
I began the day re-telling my story to Dr. Sarah Peterson and her medicine team of students and Dr's in training. After that hour passed as I re-told my tale, I was waiting for the next wave of Dr's to come into evaluate me and hear the story as well. So a few hours passed, and Dr. Hirano appeared in Room 1404. So here we go again. I re-told my tale for the 2nd time in a matter of hours, and Dr. Hirano takes careful notes about the past 2 months, in addition to the last 28 years. After that evaluation, I was seen by a DR who would become a great friend, Dr. Michael Roth, and Dr. Buckman, another GI on the Northwestern staff. They asked me the story again, and then began to order some tests that we'd start with preliminarily to see if we could find an answer. The next day I'd be under-going an Endoscopy (i'd go on to have 9 of these in the next year) and another key decision was made as well. Given the fact that my nutrition levels were extremely low at this point, while I would under-go many more tests in the coming 30 days at Northwestern, it was vital that I begin to be re-nutritioned. So, while I was sleeping during the endoscopy, they put a temporary feeding tube in my nose. Feeding tube ??? What ??? I was confused and overwhelmed and it was only the beginning...

1st Night in 1404...

So I arrive in Room #1404 at Northwestern Memorial hospital feeling as nauseous one could possibly feel and yet I lay in my hospital bed with simply a basin and the Cubs on TV... Nurses were frantic in the room next door as a more serious catastrophe was taking place, yet I am there vomiting and vomiting and vomiting some more with still no nurse attention. We were off to a bad start. Finally the catastrophe next door was over and my nurse was able to come in and get me situated. I'll always remember my 1st nurse was Monica. She couldn't have been nicer to me that 1st night as I was sick as a dog and waiting to still see the admitting DR. After about an hour, a young DR comes to my room and greets me and my parents. Will was his name and DR was his game. Will proceeded to ask me what felt like never-ending questions which lasted for over an hour as I had to give him a complete medical history from birth (which I shared with Brett, my fraternal twin) until the current days activities. I told him all about my early struggles as an infant who was born a hemi-paresis, then was Growth Hormone Deficient, and then now this. My latest medical mystery that needed to be solved as fast as possible. Will finished his questions and then explained to me that they were going to attempt to do the 1st test they wanted done which was a CT Scan. Oh sure easy, right, CT Scan. Just lay there and let them take pictures right. WRONG!!! Here are 4 bottles of Barium Contrast that we need you to drink as much as you possibly can before the test in 2 hours. It was now 11pm and they were just asking me to drink 4 bottles of Barium. I couldn't even tolerate drinking water at this point --- How did Will expect me to be able to tolerate 4 bottles of pure Barium (raspberry flavored --- what a hoax). So i start with the 1st bottle and within maybe 15 seconds there was my mom holding the basin in front of me as the Barium came right back up and out and into the maroon basin (which would become 1 of my dearest friends in the hospital since it was used so often). So Monica was called immediately by me pressing the RED NURSE button on the remote control. This button would also become 1 of my nearest and dearest friends in the hospital as I pressed the button probably over 1000 times in my stay. Monica called Will and it was decided that we'd skip this test for now. Good idea genius. I didn't have to be a DR to know that doing a GI test that required a patient who has now been nauseous and vomiting for 2 months to drink Barium. But oh well. Zofran (nausea medicine --- another 1 of my hospital best friends), Ambien (sleeping pill) and Night-Night...

The Beginning...

My name is Shark. I am 28 year old male. And I have a story to tell.

In March 2008, I first begin to realize that there was something wrong with my body. My meals and portions were shrinking, my weight was dropping rapidly, and i wasn't able to tolerate food or liquids by mouth without vomiting (in addition to experiencing severe nausea). I see my GI Dr who runs a few EGD's (scope down your throat into intestines) and sees that everything looks good. In search of some other opinions in late April / early May, I am referred to a DR @ Evanston hospital (who will remain nameless) who runs a new test called a Gastric Emptying study. This is absolutely the worst test for anyone who is experiencing nausea and vomiting like I was feeling at this point. They make you eat radioactive, yes radioactive, EGGS, and then take pictures for 2 hours. At the end of 2 hours since I am so nausea I immediately vomit up the radioactive EGGS. Great test. I guess I failed (which I did, but not as bad as some other patients). The test showed my stomach was slow to empty. So, my DR decided that he would try a procedure that would possibly help speed things along in my GI tract if we did a Botox (yes that Botox) injection into my Pylorus (a canal that opens up to allow things to pass from your stomach. So i undergo this procedure which is the same as an EGD with the injection added. If it was working within days I should have been able to tolerate much more by mouth. The days went on, the nausea and vomiting continued, weight loss dropping more and more, and then I was forced to be hospitalized it got so bad. So, admitted into Evanston hospital, I was getting IV fluids and medications and looking for answers at this point. So, we did some research and were able to get to a specialist at Northwestern Memorial Hospital in the area of GI Motility and we had a connection to get his attention. So over the weekend while I lay at Evanston continuing to vomit despite the medication, we needed a fast response from the DR @ Northwestern to get me transferred to his care (which I'll get to later on). So the weekend passes @ Evanston, watching Cubs and Sox games and NBA playoffs, and Monday comes and my mom gets a call from the nurse of the DR @ Northwestern that the DR wants to see me ASAP and that I was going to be transferred that day to Northwestern in downtown Chicago. This is an extremely well known hospital that is a teaching hospital as well with lots of different resources. So that Monday night, I was loaded into a Superior Ambulance and we maneuvered the night-game Cubs traffic on the outer drive and were at my room at Northwestern within a half-hour (just in time to actually see the Cubs game on TV). Northwestern Memorial Hospital Room #1404, my new home (for how long I couldn't even imagine)...