1st Days of Treatment... And Dr. Camilleri

So I got to Mayo on Sunday afternoon (only took a little of 5 hours straight driving) from home... Treatment started Monday AM... I was going to be working with Pat (physical / biofeedback therapist) 2 times a day for a week...



Since I don't really go into details with regards to the treatment, I'll just say that Pat was happy and encouraged by my dedication to the treatments and it was showing in our sessions... There were still some muscles we still need to continue to re-train and strengthen, but progress indeed... We have accelerated my treatments to a higher level now and things are getting better each session... I just need to continue to really push myself and remember what my focus is each time I'm working with Pat... I also had the opportunity this past Tuesday with Mark (occupational therapist)... We did some more relaxation and breathing biofeedback and then I actually got to play a driving game with a steering wheel and gas and brake pedals on the computer and have him monitor my levels of stress and breathing patterns... It really was an awesome exercise and so interesting to talk about these things and learn what the results really mean... Mark is great at explaining how to use these things in daily life and has helped me tremendously with learning to breathe and let things go that bother me... I am very appreciative that I had the chance to work with him again and for him to also see progress from our last sessions almost 4 weeks ago...



Each day after I've been done with my treatments, I've gone and tried to hit some golf balls and continue to work on my game... It's been a nice closing to each day of hard work... I found this waitress from last time I was here 4 weeks ago for the initial treatment at the best restaurant in Rochester (300 First) and the Redwood Room jazz club downstairs... So she has been taking care of me each night for dinner which has been great...



So I decided 2day that I was gonna go to Hazeltine Golf Course (PGA Championship) for the 2nd round of the tournament on Friday before I leave town... I have 1 treatment on Friday AM that will be done by 10:30am and then I'll drive up straight from there and be there by 12ish and go see the full afternoon session... TIGER tees off at 1:45pm so I'm planning to follow him most of the day as much as possible and then spend the night in Minneapolis and drive home Saturday... I wasn't able to see BWade, but may crash at his place Friday nite while he is in Indy for the 1st pre-season (so maybe I'll catch him at 2am when he gets home)... Then I'll drive home Saturday from Minneapolis...



Just talked to someone who really knows what Im going thru... They, too, are really really strong and have some health issues of their own... They took the time to read all 39 postings to date... I appreciate others who have taken the time to do the same... I admire this others strengths as much as they share their admiration for my strength as well... It's a truly tough thing to have empathy for people unless they are in similar situations and for that I'm grateful to have this person back in my life (since it's been a few years since we've seen each other or talked but recently re-connected)... Thanks for sharing and I'm here for you all the time...

Lastly, I met with Dr. Camilleri today to check-in and share my progress... We discussed what has happened over the past 4 weeks, and he was very ecstatic with the results so far... He credits those to my hard work and dedication to fighting thru this and getting control of the situation... I can't thank him enough for all he's done and his level of care (and thanks to his nurse Deb who is truly there for the patient at all times)... I'll finish strong these last 3 treatments here and then continue them for another 8 weeks 2 times / day and then from that point just a few times per week to continue to keep the muscles strong and trained properly... So dedication, focus and a desire will continue to prevail...

THanks to all who have been there 4 me... I get thru these days with that support in mind...

SHARK

P.S. I hope TIGER shoots a ridiculous course record on Friday... So pumped to see the master up front and center (then again at the BMW since Sammy G works for NBC and is gonna hook me up with good tix)... FORE!!!

It's Been 2 Long...

So I apologize to those of you who have been looking for updates these past few weeks... I've been slacking on my blogging and working more on my golf game and working out... Also, been doing some work from home to get back into the swing of things in the world of copper wire...

The tube came out a few weeks ago... I've been eating normal and supplementing with some Whey Protein shakes twice a day to help put on some weight... I actually gained 4 pounds in the past 2 weeks of working out and using the Whey Protein... Trainer is very happy with the progress and is working me out like I'm training for a heavyweight bout with Tyson... But feel great and definitely much needed exercise... Tipping the scales @ 123.5 right now...

Golf game is improving... Feels good to get swinging again... Been 3 summers so feels great to just be able to do things that I like again...

Workout program has been great... 3 times a week at 5am... These trainers are great and have gotten me in great shape so far... Others have noticed a difference already in my shoulders, chest and arms...

Continuing to do treatments 2-3 times per day... Leave for MAYO for a 1-week refresher course and meeting w/ DR @ the midway point of the treatment on Sunday... Will be there all next week... Hopefully will be able to get out to Mankato to VIKINGS mini-camp and see BWade, Berrian and the rest of the VIKINGS crew...

So things are coming together nicely... I can't complain and just keep sticking with the program...

Haven't felt this good in years... So positive energy all around...

Thanks for all support!!!

SHARK

P.S. I'll try and be more on top of the blog later this week and while @ MAYO next week since I'll have plenty of time on my hands...

First Full Week @ Home...

So this week has been my 1st full week at home since returning from Mayo so I figured it was time to share something...

This week has been a difficult week emotionally and therapy-wise. I had a hard time coming home since I am an emotional person and the relationships that I had built with Pat and Mark and Gabriella were all very strong that it has been hard to sort through those feelings and separation. I've had some dialogue with Pat regarding returning to Mayo the week of August 9th to 15th for a 1-week re-training course with her so that she can check my progress and help me work through any struggles I maybe having on my own with the the therapy. Also, I hope to be able to work with Mark to do some more of the relaxation biofeedback. As for Gab, we've continued to keep in touch and help each other get thru some hurdles with the therapy and pick each other up when things aren't going our way...

One thing that I've been thinking a lot about as well is trying to work with the Mayo Clinic in a way in which they could create some online network for people who are going thru similar types of diseases or treatments, so they could have a forum to communicate questions or problems or simply have others to talk about issues with. So, I am actually gonna hope to talk to someone when I go up there in August and see if I can't get something started for them. I want to definitely help others thru tragedy or trauma or hardships and really show them that you can overcome almost anything through hard work and with a great support staff...

Went to a 95-year olds birthday and took my grandma out for 1st time in a while... What a crew that was... I brought the median age down by about 40 years...

3 more weeks at home then Mayo again for a week... Hard work continues...

SHARK

TUBE IS OUT!!!

So I took a huge step today... I saw the surgeon and we concluded that it was safe to remove the J-Tube permanently... Although we thought that the first time, now that we are sure of the diagnosis and treatment, it is a nice relief to not have that tube anymore...

I've been struggling with the therapy so far at home... I've found it much more difficult than I anticipated coming home... I've given thought and will consult with my rehab therapist next week to see where I am at, and if we both feel I could use a little more help, I would go back to MAYO Aug 9th to 15th for a 1-week re-training (2 sessions / day)... So I'll just keep battling each session and hoping to see some progress in the days to come... I have to keep reminding myself that this is a process and is not supposed to be easy...

TUBE IS GONE! Couldn't be happier. Either could Dr. Nagle and Dr. Roth (who I got to see at the hospital for like an hour and talk about everything). Moving on...

DONE and DONE...

So today I finished my 2 week treatment program at Mayo... This consisted as I've explained before of both physical and occupational rehab... I had my last sessions today and now I am in a position to move forward and hopefully progress on my own over the next 3 months... There are goals for the rehab portion of the program to which I need to work towards (I'm about 1/6 of the way thru the program)... So, i'll continue to work hard on my own 2 - 3 times per day and hopefully continue to make progression towards the finish line... If in fact I find it difficult over the next few weeks or so and we don't see the progression they'd like to see on my own, I will return to the Mayo Clinic for 3-5 days for another session of treatments with my therapist here... So I'll be keeping busy with both the physical and occupational therapy programs that are available for me at home and hopefully in 3 months we can see the finish line...

As for my visit with Dr. Camilleri yesterday, things went very well... Although I maybe a little behind schedule in terms of the progress of the rehab, I have been able to make huge strides in terms of re-introducing oral nutrition again and stopping the feedings thru the tube all together... I have certain hydration and nutritional goals that I have to meet each day and if I can maintain those over the next 3 weeks or so, then he feels comfortable with my feeding tube being removed permanently... So I will be very conscientious of what types of calories, proteins and liquids I'm eating on a daily basis (I actually bought a program for my computer which will allow me to track all this activity)... My goals are about 1800 calories, 60-70 grams of Proteins, and then about 60 oz of liquids for hydration (additionally I will be on a nutritional supplement that is like a box juice that each have 250 cals and 9g of Proteins that I will drink 2-3 times per day as well)...

Emotionally this has definitely been a roller coaster ride... There are highs and lows in life and the key to success is being able to work through the lows and get back to the highs... My hope is that thru the tools that Mayo has provided, and my work with my therapist at home, over time this all will fit together and be able to be put behind me forever... I am excited to come home and re-associate myself with some sense of normalcy to life, but also know that change doesn't happen overnight so patience will play a big part in my success... Also, I'll continue to keep in touch with Gabriella and be able to share stories (both good and bad) and be able to work together towards our finish line of sorts... It is therapeutic for us both to be able to share this experience that was unlike any other, and until you've really lived it, it's hard to make that connection...

The people that I have had the opportunity to work with over these past 2 weeks have been an amazing part of my life that I will remember forever (and see again I'm sure in the next few months)... Their dedication to helping me achieve my goals, as well as my dedication to trying to achieve those goals, was extremely instrumental in getting me to where I am now just after 2 weeks... I look forward to continuing to keep them updated with my progress reports and know that they are simply a phone call or email away from helping when/if I hit a speed bump of any kind... THANK YOU PAT and MARK and KAREN!!!

I look forward to seeing everyone at home and beginning to feel better... It's all a work in progress and I won't stop until I know that everything has been achieved... But for the 1st time in now nearly 18 months, I can see a finish line that I know is achievable and which will lead me to a much healthier, safer way of life...

Thanks again to all who have followed this blog to this point, and I look forward to continuing to share my stories as I work on all these things at home.... Every one's support has been a tremendous inspiration and I can't thank you enough... To know there are that many people who truly care about me has been my rock...

I actually hope to join some support groups when I get home to help work thru and talk thru some of the issues that still linger... Also, I have a deep desire to try and do some motivational speaking with regards to helping people get thru tragedy in their lives... I've learned so much about myself that I only hope I can share that with others...

To a new chapter of my life... Here we go!!!

SHARK.

Here We Go...

Today will definitely be the longest of the days at the clinic thus far... Starting at 730am, ending at 5...

Seeing Dr. Camilleri this afternoon to discuss the future...

I've forgotten about yesterday... Focused on getting the most I possibly can from today...

2 more days to go here... I can do it!!!

SHARK

Today is Forgotten... 2morrow the Fight Continues

So I just went and had dinner... Enjoyed myself... Was able to think about today and reflect...

I (with support from someone who will remain nameless) have forgotten today, and am ready to continue to fight 2morrow...

6 more sessions...

SHARK

Keep Fighting...

So today I took a few steps backward... I was discouraged, but also have been able to take some time to re-discover what progress I have made in so many different areas... I have to try and re-focus my energy to the progress that I've accomplished, not worry about what lies ahead, and know that deep down there is a person inside of me that can and will beat this (however long that may take)...

Tonight I will give myself that chance to reflect on everything that has transpired over the past 17 months, both positive and negative, and use that to work thru these last 2 days here at the clinic... I can't worry about the things I can't control, and only focus on what it is I can control...

Tomorrow I meet with Dr. Camilleri... Obviously I don't know what it is he is going to say regarding the short and long-term prognosis, treatment plan, etc, but I do know that regardless I will be ready to continue to move towards an end result...

So, it's time over these last 48 hours to focus on the positive... Forget about the negative... And be prepared to face whatever I may encounter in the future...

To a better day 2morrow and the next day and the next day...

SHARK.

Today is hopefully my breakthrough....

So yesterday I made some big strides on a busy day... The therapy sessions are definitely intensefying each time, but that's a good thing... I knew it wasn't going to be a vacation, so I'm not all that surprised... I'm more suprised at how advanced the therapy is... Biofeedback is really working and it's such a powerful thing to know that your mind and muscles are so inter-connected...

After therapy, it was pouring rain, then got nice at 6pm so I went and played 9 holes of golf which was relaxing as well...

Yesterday I got to do this new type of Occupational Therapy that was really cool about relaxation and breathing the right way... I'm going to do that again on Thursday and then maybe again on Friday...

I found out I'll see Dr. Camilleri (my GI who is the man here) on Thursday afternoon... Thursday is going to be a real long day... Starts at 730am and ends at 5pm...

3 sessions today, 6 appt's tomorrow, 2 on Friday...

Basically i'm turning around the final turn heading for home down the stretch if you're a horse racing fan... I'm like at the mile marker with about a 1/4 pole to go...

So hopefully I continue to move forward and the DR gives me the go-ahead to head home on Saturday...

I'll update again 4sure...

SHARK

P.S. I was ready to go nuts yesterday in the waiting room since Michael Jackson was on the TV from 730am to 5pm... I feel bad that he died, but 4 real ?!?!?!?!?

Monday and Tuesday...

So I got back Sunday as I said in my last posting... Got some great pictures of the wedding which I'll try and figure out some way to post them later on...

Monday was my 1st day back at the treatment... I had 3 sessions... 2 of which were awful and 1 of which was just OK so it was kind of a down day for me progress wise... But I forgot about it and re-focused my energy to today's sessions (they added an Occupational Therapy at 745am today) so I have 4 sessions today... So far I had the Occupational and 1st of 3 biofeedback sessions... Been a great morning... Hoping that I can continue the momentum into the afternoon... 2 more sessions and then done by 4pm today...

Thanks for all the postings, etc...

Lucky #13 sessions left...

SHARK.

WEEK 2 --- Ready to Work!!!

So I had an absolutely wonderful weekend this past 4th of July holiday as I was able to leave the Mayo Clinic and meet my dad and Rooney (younger brother for those that don't know) for a family wedding... Got to see some of my older "cousins" (so we call them) and play a round of golf and just have a great time trying to relax and refresh myself for this week.

So I drove back yesterday to Mayo from Madison (about 3 hours) and my friend Cory met me up here last nite to spend the week watching over me like my mom did last week. It'll be nice to have someone here in case something were to happen and obviously to help pass the time.

This week maybe a little more grueling than the last, but I'm re-focused and ready to finish strong. I look it sort of like the grand finale --- similar to OJIBWA's Collegiate Week --- You give it all you can physically and mentally and hopefully at the end of the week you've won. The one difference --- I know I've already won even before I start this week --- I'm at the best place on a treatment plan and that has been my victory.

So onward to another week... I'll obviously keep the blog going...

Miss all at home. Love the support. Can't wait to do something for the league!!!

As Darren J Anixter said to me yesterday --- "You're back to being SHARK and not Jason!!!"

SHARK.

P.S. Gab --- I'll call you mid-day to get the encouragement I always needed for the afternoon sessions!!!

Week 1 Over...

So week 1 is over. Off to Madison for a wedding this weekend starting on Friday til Sunday. Driving back up here Sunday afternoon to start treatment again on Monday.

Been a long week and next week will be even longer, but it's all a process towards an end to this.

The treatment is grueling and I would prefer 1 a days, but if it was that easy I guess they wouldnt have you here for 2 weeks doing 3 a days.

My friend Gabriella finished today and had great encouragement for me for the next week so I'll get thru it and all will work itself out. It's nice to have someone going thru the same thing that can really relate and understand all the physical and emotional pieces that are involved.

I'm off to bed so I can drive to Madison 2morrow and then back here Sunday.

Couple steps forward, a few back. But it's a work in progress and I know the end is in sight. I will continue to fight and make sure that this is something that I beat rather than it beating me.

Thanks to all for the well wishes. My mom has been a great support staff this week and all the emails, texts, etc are amazing encouragement.

Time for bed. Next week finish strong and then move forward with my life that has been on hold for the past 17 months.

I'll update the blog again after the weekend on Monday when I get back into the treatment groove here...

Happy 4th of July to all...

SHARK.

Day 4... Ready to Rock...

Good Morning!!!

So I've started my day with a nice grande Mocha with extra shot of espresso and getting ready to start Day 4... 3 more sessions today... My friend that I met, Gabriella, finishes today so she'll be taking off but we'll stay in touch 4sure to share stories, etc...

2morrow I head to Madison for the weekend for a family wedding since the clinic is closed from Friday til Monday. I'll drive back Sunday and re-start my program on Monday here. Over the weekend I'll continue the program on my own so that I can continue to make progress and no regress after a few days off which is excellent...

Met with a nutritionist yesterday which was a huge help so that I can transition from the feeding tube to regular foods again (which I've had success so far) so it's just re-introducing new things over time slowly and gradually. But she did say Chicken Wraps, Burgers, Hot Dogs are all on the menu for LITTLE LOUIE'S and the SHARK SPECIAL!!! No French Fries ever!!! But very helpful to know what is in what in terms of calories, proteins, etc...

I'll send another update 2nite as long as I'm not dead tired... Keep the facebook, emails, BB Messengers coming... Love the inspiration during the day to help keep my focus between sessions...

Much Love to all... I couldn't ask for a bigger or better support system than all the friends I have today...

Until 2nite... Big Day 4... Here we go!!!

SHARK.

So After 2 Days...

So the treatment has started... I'm in a physical therapy for about 45 minute sessions 3 times per day... They are pretty intense and definitely require a lot of mind-body focus, but they've had tons of success with this type of Biofeedback that I'm optimistic that although I may not be doing so well these first couple sessions, things will improve over time. So I just keep plugging along (no pun intended) and show up at my appt's and do as they tell me.

I've been able to tolerate more food which is a step in the right direction. Meeting with a nutritionist this morning so I'm sure I'll have a whole new diet (that better include Chicken Wraps and BBQ Quesadillia from LITTLE LOUIE'S). It's also possible I maybe put on a gluten-free diet since that is supposed to really help with people who have similar issues.

Speaking of similar issues. I met a wonderful girl yesterday who just graduated college and has been here for a week already doing the exact same treatment and experiencing the same symptoms as I was this past 17 months. It was nice to talk to someone who is going thru the same thing and can truly understand what all this "crap" means. We exchanged numbers and are on the same therapy schedule so I'll see her again a few more times before she leaves to go home to Buffalo, NY on Thursday night. We actually did dinner with her and her dad last night which was really nice. Nice to have someone on a bad day to call and be able to relate to what that's all about.

So today we got 3 therapy sessions and a nutritionist and if it can finally warm up past 60 degrees and winds at 20mph then it would be great to play golf again (as I did the 1st morning and afternoon). Supposedly it'll be back to 80's and sunny starting tomorrow for the rest of the time I'll be here.

Shoot me calls or emails or texts or BB Messengers or Facebook... I'm always checking my phone for messages and love to hear the support and motivational speeches...

I'll update again 2nite with a full report of the days activities. It sort of feels like I'm at Camp again but for sick people...

4 down, 20 sessions to go...

Mayo for Treatment...

So I 'm back at the Mayo Clinic for the next 2 weeks for 1 of the treatments that was necessary to correct some of the problems. I start on Monday for 3 hours a day the 1st week and then 2 hours a day the 2nd week. Hopefully after the 2 weeks things are back to where they should be, but if not there is the possibility of an extra week of treatment or a potential surgery to correct the problem (I'll just have to take it 1 day at a time).

Drive up wasn't bad at all. Mom is here with me this week and then my friend Cory will be flying up on Sunday to spend the 2nd week here in beautiful Rochester, MN with me. I actually will have a nice break this 4th of July weekend since I have a family wedding in Madison and so I'll drive my mom down there and spend the weekend there and come back Sunday to resume treatment next Monday.

I've had a few hospitalizations since the big OJIBWA trip, but just for hydration purposes. Otherwise I've been feeling pretty good. Day at a time. Increasing what I eat each week as time goes on. Soon enough the SHARK SPECIAL will really be in full effect @ Little Louie's.

I'll keep the blog updated as much as I can each night after the day. I may have to not be too graphic given the type of treatment, but feel free to google Pelvic Floor Dysfunction and study up yourselves.

Thank you everyone for their support. I couldn't have gotten thru these last 17 months without all of you. Please keep it coming and know that hopefully soon enough I will be whole again and back as a regular in the BPS hoops league each Wednesday night (Stu Nitzkin best be working the roster for me!!!).

Feel free to call or email --- I'll only be in therapy about 3 hours a day so would love to hear from you and take my mind off things...

Finish line is near. Positive attitude. Mental focus. I will beat this soon enough.

THANK YOU EVERYONE!!!

Until 2morrow...

SHARK

12 days til Mayo for Treatment...

So I wanted to take this opportunity to post a new blog to update people on how things have been progressing over the past few weeks since the Memorial Day posting.

I have slowly been able to tolerate more and more liquids and some solids by mouth rather than having to use the feeding tube as much each night. I'm still usually giving myself some nutrition thru the tube at night a couple days each week, but as I've been able to tolerate more by mouth that amount has decreased. I'm able to tolerate the following types of foods so far: grilled cheese, chicken breast, turkey breast, tuna, milkshakes, some soda, lots of water and Vitamin Waters to stay hydrated properly.

I've had 1 hospitalization since I've been home from Mayo the initial visit in May. So that definitely is a drastic improvement from what was the norm before that (every 3-4 days). I was just in from June 5th to 10th (I had to get out the 10th so that I could go on the BPS @ OJIBWA weekend with the 90 other guys). So for those few days in the hospital I was getting a little pain medicine when needed, some nausea medicine when needed, and tons of IV fluids, as well as eating some jello and getting some tube feedings.

I just got home this past Sunday from the BPS @ OJIBWA weekend. We had 90 guys go up to camp for Thurs to Sunday for a 2-day basketball tournament, as well as to hang out and all bond as a group of guys to honor the passing of Brian P. Schwartz. He will never be forgotten as 1 of the group and his memory lives on in all of us who had a chance to know Brian. It was a great lift for me mentally to be able to make this trip with this group of guys. I hadn't seen some guys in over a year since I've been ill, and some not for almost 15 years since we were at Camp Ojibwa together. I had a great weekend and was able to take a lot of my memories from this trip and support of all the guys with me thru these next 4 weeks of treatment and rehab. Thanks to all who were there and lifted me up. DJA always puts on a good show!

I am scheduled to go back to Mayo in about 12 days, June 28th, to begin a 2-week rehab program there until July 11th. The 1st week I'll be in rehab for 3 hours / day and then the 2nd week I'll be in rehab 2 hours / day. My mom will be with me the 1st week and then a friend of mine is going to meet me there the 2nd week. I'll also see Dr. Camilleri while I'm there to have him evaluate the progress and treatment plan for future. I'm both excited and nervous for this next step, but I will remain strong and take with me all of the support that I have and get thru the rehab to be whole once again.

I'll make sure to update the blog more regularly from Mayo when I am there starting June 28th...

Yesterday and the Weekend...

So yesterday I got a great surprise visit again from #19 BWade. He brought along long-time friend from the U of M DTerrell also. It was great to see both of them. We were able to hang out a few hours and share some laughs. Very nice surprise visit.

Today, my parents are heading off to Austin, TX for both of my brothers graduations. Brett, my twin, will be graduating Law School, and Rooney will be graduating with a Masters in Social Work (after just getting back from spending 4 months in Africa). I was supposed to go to the graduation festivities, but given the illness and the now recovery, it would just be too much in so few days. I am really torn about this because I was at both of their initial graduations from college (Stanford and Arizona, respectively) and it brought me extreme joy to share in their accomplishments. I promise even though I'm not there once they come home I'll give them each their usual celebratory bottle of champagne.

I will be there in spirit. And they understand. We'll be celebrating in about 10 weeks when all this can be behind us all...

Happy Memorial Day to all... GO HAWKS!

Repeat Visit to Dr. Nagle (surgeon)...

So today I had the pleasure of going to visit my favorite surgeon at Northwestern --- Dr. Nagle. Nicest guy, but always is running at least over an hour behind schedule. So I had a 10am appt, and got there a few minutes early. Sure enough at 1015am his nurse asks me if I could please let someone go ahead of me. Given that I am a nice guy, I say OK, only to then get called back to a room at 1030am and not see Dr. Nagle until almost 12pm. Then when I got to see him, it wasn't the most pleasant of visits. Occasionally (more frequently lately), I have been experiencing some growth around where the feeding tube is. So, Dr. Nagle has these special sticks that look like long matches, that is Silver Nitrate, and when applied to the skin BURNS like crazy. But it takes away the growth. So he had to do this again today (remind you I am totally conscience and on no sedatives or pain killers!!!). Afterwards, he decided that in order to remove it hopefully forever, next Friday we'd do an outpatient mini-surgery to remove the growth. At least there will be sedatives involved...

After the appt, I stumbled into a very familiar face --- It was Monica --- my 1st ever nurse when I was admitted @ Northwestern. She was there on an off-day and I was getting ready to leave. It was nice to spend a few minutes talking to her. She was very excited to see me (if I may say so myself) and the hug was great. I failed to follow-thru with a phone number...

Only took an hour and half to drive down there and almost 2 hours to drive home... Fun day... Can't wait for next Friday...

It's been about 10 days...

So I've been home for about 10 days since the adventure at the Mayo Clinic. I had planned to post some pictures for people to get a feel of what it was all like, but unfortunately had to get a new cell phone and of course they lost all the photos I'd taken. So my apologies that I can't share those images with you.

I started some of the treatment last week. Dr was very nice guy. Look forward to working with him on this 1st treatment and in the future.

I go today to see Dr. Nathanson to go over everything that was found at Mayo. He is my GI here locally and so we'll get on the same page and make sure everything is being followed through appropriately.

2morrow I go see the surgeon at Northwestern. He's gotta take a look at the tube site and make sure all looks OK and then discuss the removal of the tube later this summer at some point. Hopefully some of my favorite staff on 14 East will be around as I hope to visit some of them in the morning when I'm there. I'm sure they would all love to hear what has been the outcome of the Mayo visit.

Most importantly, I hope to see Dr Roth 2morrow AM also. I know he has been with me for the past 15 months every step of the way, even on days he didn't have to come see me in the hospital he did, and it will be nice to go over everything with him and ask some questions that have come up, etc. What a friend.

Then after the hospital I'm going to see Rabbi Conover at Temple Sholom to visit and share the findings, etc. Her continued support, along with the rest of the Sholom staff, has been unwavering and dedicated to helping me feel better physically and religiously.

So tomorrow should be a busy full day. Which will be nice since the last few days been trying to fight off this nasty cold. I hate colds.

Will be back soon once I know when all treatments have been scheduled, etc. and as I make progress...

Time to Heal...

I've been home a few days now from the Mayo Clinic. I was able to attend the Denny Rosen roast when I got home Saturday nite. I surprised the group by attending, but it felt good to get out for once and know what was going on with my body finally. Some great laughs and then came home and was exhausted. The past few days have been nice to sleep thru the night. I am still experiencing the occasional nausea and some abdominal pain / stomach pain, but have been able to fight thru these episodes with the new medication, Phenergan, and the breathing exercises.

I start the new medication to help re-set the nausea receptor hopefully Thursday. So that treatment can get underway.

Then I decided (with my parents) on the drive home that it was important enough that the 2nd treatment on the muscles below the colon be done properly so I am going to go back to the Mayo Clinic in June sometime for 2 weeks to have that treatment done. It'll be 10 work days, 3 hours a day, and then at least it is still under the supervision of Dr. Camilleri should something not go right, or he needs to change the course of treatment, etc. So, hopefully by the end of June or so the 1st 2 treatments can be completed and then it will just require some time as I begin to advance my diet.

So far I've been able to tolerate a little bit of Mac / Cheese and a little jello. Still doing the tube feedings for about 12 hours a day overnight. Then I try to eat a very small meal each day. Until they totally correct the muscle issue they don't want me to eat heavy things yet. Mostly liquids and softs.

Dairy Bar in Glenview will be hit-up soon enough once Stu Nitzkin is ready to go...

I look forward to starting the treatment process Thursday. It will be hard and require dedication, but can be done and will be done. 2 more days to wait...

Day 3... Results and Treatment Plan... Going Home!!!

So, it's officially over. Day 3 @ the Mayo Clinic is complete. It's been an exhausting 3 days that seemed like an eternity, but at least I know I was able to get the best care possible from Dr. Camilleri. I'm coming home 2morrow to begin the next phase --- Recovery and Treatment.

Today started with an Autonomic Sweat Test. Basically they hook up some things to your arm and leg and then measure your sweat responses and blood pressure / heart rates in different positions. It was fairly easy to go through and I was happy to know that it was hopefully the last of the many tests.

After the test, my parents and I spent some time walking around Rochester and I actually stumbled upon a store here that was having a 2 suits, 2 shirts, 2 ties SALE and so I bought 2 suits in between appointments. What better way to spend a few hours in Rochester while your anxious for results and a follow-up meeting the DR, than buying 2 suits cheap (no sales tax on clothes in Minnesota for all you shoppers out there).

At 130pm, we went to meet with Dr. Camilleri to find out the results of the many different tests and to discuss the treatment plan. And so Dr. Camilleri explained everything top to bottom and answered the many questions that both I and my parents had. This man is incredible with the patient (me) and was the same with my parents in answering all and every questions we all had. He spent about an hour going through it and explaining in detail what the next few months would be like.

The results were as follows.
1. Neurological dependency on anti-nausea medication that over the past 15 months only got worse and worse as the previous doctors kept prescribing more and more combinations to try and combat the symptoms. So, in order to break this I will be put on another medication that over time will help reset the nausea receptors in my brain back to where they should be. So, I'll hopefully be starting this next week and can begin this 1st phase.

2. Muscle problem between my colon and other lower GI organs. This was found by the unpleasant procedure that unfortunately I don't think would have been appropriate to share, but take my word --- Don't ask to do it! So, again, a treatment is offered that requires some rehab with a medical professional --- I'll either be able to do this at University of Chicago or Northwestern, or it is possible that I may have to return to Mayo Clinic where they specialize in this type of muscular rehab which here would be only 10 days. So, in the next week or so as I begin to find the resources around Chicago, we'll then make a decision if it will be necessary to come back to Mayo for the treatment for this problem.

3. Over the course of the next 2-3 months, I will slowly and gradually be able to ween off the feeding tube and onto regular meals again. I'll start with some soft things, then advance it a little bit at a time and see how my body responds. So, Pete Weiss -- rest assured, I'll be back at Little Louie's by the end of summer back on the Shark Special. Hopefully this can be done over the course of 2-3 months (ideally), but time will tell and dictate this process.

4. I will be practicing something called Diaphragmatic Breathing --- This helps to calm your stomach muscles and allow you to try and control any nausea or vomiting you think may occur. It may look silly and sound silly, but there have been extensive studies done here by Dr. Camilleri and some of the other doctors that show this has a tremendous impact if done with regularity over time.

So basically, the past 15 months I can say I have been to "hell and back," but now I am re-assured that over time this is all going to be cured with my hard work and dedication to all the different treatment regiments that are required.

I'll be leaving 1st thing in the morning to come back to Chicago, and will start ASAP on the recovery.

I want to thank everyone for all their encouragement and support. I hope that I have been able to paint a realistic picture of what the last 15 months has been. I will continue to update the blog periodically over the next few months so that I can share how the recovery and treatments are progressing.

To my parents, a special thank you... There aren't words to describe what these 15 months have been like for them also, and without them by my side the entire step of the way, I wouldn't have been able to get to this point. I love them!

I'll be back soon... Signing off...

SHARK.

P.S. I'll post 1 more blog when I get back home and upload some pictures for everyone to get an idea of what this place is all about...

Day 2 Complete...

So Day 2 is officially over. It started at 915am and ended at 1030pm at the ER (again). Long days here at the Mayo Clinic, but all so far has been well worth the wait despite how uncomfortable the tests may be.

Today started with a Sweat Test. I mean just picture being in the middle of the desert without sunscreen and water in a confined space. So it starts with you being weighed before you start to sweat like crazy. You then lay down on a table, and the nurse applies a powder to your entire body and puts sunglasses on you. Then, you are wheeled into a 6 foot enclosed space that has heat lamps that raise the temperature inside the chamber to 101 degrees. Then as you begin to sweat from the heat lamps, the powder that was applied begins to turn purple. So, you are stuck sweating in this chamber for about 45 minutes, then come out looking like a plum. Afterwards, you are weighed again, and try and shower to get off the purple powder (which I still have on me after about 10 showers). And that was that.

Then, off to the lab for some blood work.

Then, off to another 2 appointment later in the day. I can't really explain the other appointments, but trust me when I tell you 1 of them was definitely not 1 I'd want to repeat again unless heavily sedated.

Then, the best of the day by far. Bobby Wade (yes the ex-Bear and now Vikings WR) comes down to visit me from Minneapolis after his workouts. We were able to spend about 4 hours together and he joined my parents and I for dinner (they all ate and I watched still) and then took off afterwards to get back for his workouts tomorrow. This was definitely a great break from the medical testing and a great opportunity to see 1 of my best friends. I did put the pressure on B-Wade to get to the Ojibwa weekend next month. Stay loose!!! (DJA that's for you)

After dinner, then it was back to the hotel room for about 30 minutes before I was starting to feel more and more dehydrated and had to go back for the 4th time in 2 days to the ER @ St Mary's hospital. I got my IV fluids, nausea medication and some pain medication. After 2 liters of fluids and 3 hours later, I am back at the hotel getting ready to try and get a night's rest before the testing starts again at 9am Friday. Hopefully after Fridays test and appointment with Dr. Camilleri, there is a chance that I could be able to come home this weekend earlier than anticipated. So, I'm going to bed hoping for the best 2morrow and ready to tackle whatever treatment plan maybe necessary from this point forward. 1 more day through the ringer. The end is near. At least I hope so...

Day 1 @ Mayo... Complete, Finally...

So let me just say that the last 24 hours has probably been the longest day of the whole entire last year. Just to summarize: 3 ER vists. 1 Gastric Emptying study ended early. 1 unbelievable appointment with Dr. Camilleri. Finally back at hotel at 230am to update blog and get some sleep before I start at 915am Thursday for more testing.

Let me start at the beginning of the day that started at 3am Weds night (1st night being here). So i get sick and have to go to ER. They give me fluids and nausea medication. Get me stable enough to leave at 530am to come back to hotel, shower, and then get the shuttle at 630am to head to the hospital for the 1st of the tests, Gastric Emptying study. I'll explain what this is all about (being that is my 3rd in the last year, and they have all been conducted differently). First, they give you a radioactive capsule to swallow which will allow them to take pictures of your bowel and colon. Then you come back an hour and a half later for the 2nd course, which consists of the grossest scrambled radioactive EGGS ever (I mean after a night in the ER, and not eating in at least 7 months, this could be the grossest meal ever), and they take another picture that will show your stomach motility. Then you're supposed to come back after 1, 2, 4, 6 and 24 hours for them to take pictures. However, if your me, you eat the EGGS, get sick and the test ends after an hour so that they can take me back down to the ER for the 2nd visit.

So, I'm back at the ER for the 2nd time in less than 12 hours. The same staff is working and is like "You're back ???" To which I reply, "Of course, this is how my last year has been." So, they start some IV fluids again to get me hydrated, give me the usual Zofran for nausea and I was in some pain from the radioactive stuff, so I was given some Fentanol. Then they decided they wanted to do a CT scan since I was having the pain now and it wasn't going away yet. So, I got to do a CT scan which showed that everything was OK, and that the pain was probably associated with the vomiting, etc (which goes along with my other hospitalizations previously). I'm there for 4 1/2 hours as they get me re-hydrated, pain controlled and nausea controlled before getting me out of there at 230 to get to my appt with Dr. Camilleri. This was what we came for and so it was vital for me to get out of the ER in time to still make this appt.

So, we head over to the GONDA Building where is office is located. And when I say office, I mean GI doctors have 2 waiting rooms on their floor that are both humungous and plush. TV's, Computer Terminals for patients to use, chairs (w/padding --- not 2 common for doctors waiting rooms), etc. So I check in for my appt, they gave me a beeper and told me they beep when it was my appt. This is the most-high tech office visit I'd ever been on. They scan all the paperwork you bring with you into the computer and it appears instantly on the computer screen in your room. The nurse takes you back to the room, which has a nice sofa and elegant furniture, computers, printers, and is very high-tech. That seems be a common theme @ Mayo --- High Tech... We spent an hour and a half with Dr. Camilleri going over birth to present day. Specifically focusing on the last year or so that things have regressed as they have. Dr. Camilleri has an unbelievable ability to ask questions and generate conversations with his patients that makes you feel at-ease, comfortable, and honest with him with regards to all facets of your life so that he can take notes and generate some ideas. He seems to already have a plan at least for the next few days with some specific tests which now will test my Neurophysiology (Brain/Receptors) and then we'll meet again hopefully on Friday to discuss results and the plan of action to follow. Overall, I came out very impressed with the possibility that this DR was finally going to figure this puzzle out after a long, trying year.

So the night didn't end calmly unfortunately. Rather I went to dinner with my parents at Chesters --- nice spot here in Rochester, happening place to be --- and then we came back to the hotel and I feel asleep for about 2 hours (missing American Idol, until the last 3 minutes when the announcement is made that Alyson was going home, and the final 3 are Adam, Chris and Danny). However when I awake I am in total cold sweat and nauseous and starting to feel sick again. So, i end up getting sick a little later in night so at midnight I was in a cab to the ER for now the 3rd time in less than 24 hours (has to possibly be a Mayo record and I've been here only a day so far). They gave me the usual tune-up --- Couple bags of IV fluids, nausea and pain medication, and I was back at the hotel at 230am.

I'm signing off for the night --- It's now 4am and I have to be up at 8 to get ready for the days activities.

I'll be back on 2morrow night and place Day 2's adventure (hopefully with some color photos of the different buildings for people to get a visual of the experience)...

So That Didn't Take Long...

Just got back from the Mayo Clinic St. Mary's Hospital ER. Didn't take long to find my way there. I can attest that for an ER this place was like the Ritz Carlton. Needed to get a tune-up of some fluids and Zofran. Now I'm back at the hotel waiting to start my tests @ 715am.

Gastric Emptying Study should be a lot of fun after this night. Can't wait for radioactive EGGS.

Good news they did tell me they'd figure this out regardless how long it may take...

Land of Mayo...

This place is amazing. Building after building after building. Monstrous facilities. I mean this is really overwhelming. I never seen such nice medical facilities in my entire life. Now I know what people mean when they say, "Mayo is the best place." I'm trying to remind myself of that anytime I get nervous or scared of what may come.

I'm staying at the Kahler Grand. Nice apartment style hotel right across from the Gonda building (main building where I'll see Dr. Camilleri tomorrow). Very convenient for getting to and from tests, etc. Got a nice view of the "Peace Plaza". Only where there are a ton of sick people would the main square be called "Peace Plaza."

Going to head to a place called Michaels (not remotely close to the Michaels in Highland Park). It's like an old-time supper club, and I'll get to watch my parents eat. No food or drink for me after 8pm in anticipation of the morning test --- Gastric Emptying Study --- breakfast of radioactive EGGS --- Yummy!!!

Off to dinner with the parents. I'll post some pictures either later 2nite or 2morrow.

Tomorrow we get the party started...

On the road...

So i'm on the road... Just passing Madison... About halfway there... Good thing I brought my IPod because the oldies and Jersey Boys CDs are really annoying...
3 more hours!

Morning Before I Leave...

Happy Birthday DAD!!! Many, many, many more!!! I love you!!!

I just went to CVS for the last time. Picked up all my prescriptions. Saw my favorite pharmacist, Alyson, who always has helped me get my medications and also cared about my health constantly asking for updates. She wished me luck on the trip.

I got a phone call from Diz. He wished me luck on the trip. Told me to keep my chin up. DJA sent me an email. It's nice to know so many people care about me. I can't thank them all enough --- there aren't the words to describe what that support means. It's coming with me to Minnesota for sure.

I'm still nervous. Scared. Excited. All at the same time. I'm gonna try and watch some morning TV (GMA, Regis/Kelly, The View possibly --- you may ask what am I doing watching this stuff, but I can tell you after the 2nd day in a hospital on a morning with no procedures, you are easily addicted to such shows). I mean what else are you gonna do, walk around the halls of your floor (I did that everyday I could about 10-15 laps a day --- 15 laps I would find out later is a mile). Just breathe. Relax. It's all gonna be OK. Keep telling myself that and I'll get thru today. I'm going to the best place possible and they're gonna help me...

The Next Few months until today...

This will be the final posting that will be in the past. Everything after this will be live-current day postings and stories. I am going to briefly explain what has transpired over the last few months since I came home in December. And it pretty much can be summed up in one word, HOSPITALIZATIONS...

These past few months since I came home from the hospital in December I have been in/out of either Northwestern Memorial, Evanston or Highland Park hospitals probably somewhere around 15 times in total. What happens is I will have a few bad days in a row, the vomiting starts all over, and I'm not able to keep up my hydration levels because I can only drink 350ml (about 12oz) of liquids by mouth a day, with 1200ml of Pedialite thru the tube and then the feedings for a total of 10 hours/day. So, after a few bad days I'm so dry and in need of fluids that I am forced to go to the hospital to get hydrated and some nausea and pain relief (sometimes if my tube site had developed some growth). So it was the same routine every time. IV Fluids for 3-4 days and tube feedings re-started the last day, and then go home again. So I'd go home, and sometimes it would be 24, 48 hrs later I'd have to go back, sometimes a week a time would go by without having to go back. To say the least, the last few months have either been me at home on couch doing fluids and feedings, or me in the hospital having nurses take care of me. Roller-coaster ride no question. It's been a week that I was last in the hospital.

Tomorrow I leave for Mayo in Rochester, MN with my parents around 9am. My life will hopefully be changing for the best in the days to come...

Dr. Nagle does it again... But why so much pain this time???

So... Dr. Nagle is summoned to perform the surgery again. Much to his dismay as he didn't want to have to do this the 1st time, let alone do it again 6 months later. But for now, there was no other options. Surgery went well. I was resting comfortably in my room on 14 East...

A day or 2 passes and I am still experiencing some excruciating pain post surgery. I remembered the last time it hurt for about a day or so then was OK. However, this time, a few days pass and I'm still having tons of pain. So, the medicine team has the surgery team back to see me. They notice that around the tube-site, there is some infection which would explain the pain. So, they took some samples of the infection for testing. It would be 24 hours and we'd have some results of what type of infection I was dealing with exactly...

Test results came back. I didn't just have 1 infection, but I was able to have 1 infection and 1 infectious disease. Staph Infection and Sudamonas. So, now the tricky part was treating the infectious disease since the usual course of action required some form of Penicillin (a drug allergy of mine), so before we could start the antibiotics, I'd have to be de-ensitized to the medication. A full day of getting poked and pricked all over my arm. I test OK and am able to start the anti-biotic needed to fight the Sudamonas, Zosyn. I'd get this every 6hrs for 2 weeks. However, I was going home in a few days, so now I would be on a horrible schedule...

For 2 weeks when I came home I had a permanent IV in my left arm, and had to hook up to the antibiotics every 6 hours. I was on a 3am, 9am, 3pm, 9pm schedule and so my sleep patterns were awful. It seemed much easier when I was in hospital and the nurse would come in at 3am and hang the Zosyn, but now I needed to wake up and administer it. All I wanted to do was rest and recover, and yet here I am waking up every 6hrs, in addition to continue to do my tube feedings and fluids at home. My days were full. I was exhausted. Hopefully after these 2 weeks, things would go back to just having to deal with the fluids and feedings...

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)...