A Downpour And Clearing Skies......

If you deal with a chronic health issue, you probably have experienced this feeling before:  You wake up one morning, and you are feeling pretty good.  Perhaps part of your mind goes to "This is the day when I am going to finally beat this!", but by the time dinner time comes around, you are back in bed, wondering why you ever even had any hope at all of your illness suddenly disappearing into the night.  

When we were driving down to Baltimore on Wednesday morning, the whole notion of a downpour and clearing skies came to me when I drove right into a tropical-like downpour on the NJ Turnpike.   One moment, the skies were fairly clear - the next, you can barely see a few feet in front of you.  The rain was essentially taunting us - once you thought you were out of the blue and the skies were clearing, it would start raining again.    As Colleen knows, I am not a big fan of driving in the rain, the snow, the fog, or even if a mosquito flies on the windshield.  If conditions aren't perfect, I just want to stay alive until they are.

These are the types of conditions people with chronic illnesses face in their every day lives - a massive rainstorm that can last for days on end, followed by a brief clearing of the skies, before another rainstorm rears its ugly head, leading to you even forgetting that you even had a few hours, or maybe even a day, of peace.  The roller coaster a chronic illness can put you on can be dizzying - and, more to the point, downright cruel.   It can be like a downpour that leads to a flood that sweeps your car away, only for you to be rescued - than repeating that same scenario over and over again.  Eventually, the rescues begin to lose their effect - you don't want to be temporarily rescued anymore.  You want the floods themselves to stop.

Once again, the trip to Baltimore was a long one, but a fruitful one.   Our experiences with Dr. O'Brien-Clarke have been nothing short of fantastic.  He actually listens to everything you have to say, talks in a very clear tone, and even is willing to accept and consider all options you throw at him.  Although he certainly is the biggest expert in the room, he doesn't shoot you down just because he has a fancy diploma on his wall.   I will get to more on that in a moment.  Experiencing this doctor and the staff as a whole just leaves you speechless - the entire operation is run like a well-oiled machine.   While some hospitals and medical establishments on a whole use the "get them in, get them out" protocol, that does not happen here.  He talked to us for at least 45 minutes or so, clearly explaining what he thinks could be going on with Colleen, while also allowing Colleen to actually talk about what is actually going on with her.

Colleen is a naturally nervous and anxious person - she needs a doctor who puts her at ease, and doesn't attempt to make her think that what she is experiencing isn't real.    The last thing a patient wishes to hear from any doctor is that everything is in their head - that they can't help you because YOU are, in essence, faking your illness.    The last thing anyone with a horrible illness wants to do is travel hours on end to see specialists over something that isn't real.  Trust me, Colleen would rather be sipping margaritas on Sanibal Island over having tubes placed in her mouth and endless testing done to her body.

Of course, for family and friends, you likely want to know exactly what came out of this - and not just the part about stopping at a rest stop on the ride home in Delaware for Starbucks and an Auntie Anne's pretzel.  Why is it that when you go to a rest stop, the food that comes out of those places tastes like it came out of a gourmet kitchen when you get back to your car?   I think they could serve you a piece of cardboard, and you would still login to Yelp proclaiming how you just had the best piece of cardboard ever.   Other than the fact that the Starbucks Girl didn't know how to make my Lemon Bar Frapp (which should have been a sign to me to NOT ORDER THAT DARN THING - I can't help myself - you would think the combination of what is essentially lemonade, vanilla, and milk would not be appetizing - but you would be so wrong)  Anyway, I digress...

The bottom line is that Dr. O'Brien-Clarke firmly believes that Colleen has a pain issue - pain is her most active physical symptom, along with frequent feelings of her body being on fire, sleepiness, light-headedness, etc.   Note that although it appears likely that Colleen doesn't have what you label Gastroparesis, he didn't flat out say that Gastroparesis is ruled out - just extremely unlikely.    Hopefully you have learned through reading this blog that Gastroparesis is a very much general, "all-encompassing" term.  One day, I (and I am sure the medical establishment) would probably love to be able to take these motility issues and give them more specific names.   Since so many people who have Gastroparesis have varying symptoms, it really is impossible for it to all be one condition.  There aren't many conditions, for example, that lead to some people bloating like a balloon, while leaving others looking like skin and bones.  Yet, Gastroparesis can (and does) cause BOTH symptoms.  It just shows how little understanding there is about all of this.

As for Colleen's protocol for now:

1.  She will, for about a week, start taking Marinol, which is essentially the pill form of marijuana.  Although typically prescribed to aid in the feelings of nausea, it can also have positive effects in other areas, including potentially easing pain.  This drug will need to be taken for a week or two - if she isn't showing any signs of improved well-being within that time frame, the drug is not likely to work long-term and can be instantly discontinued;
2.  After that trial, she is going to try Remeron.   Remeron is actually in the anti-depressant class of drugs, but those types of drugs have proven to sometimes be effective in the treatment of motility disorders.    It is again one of those medications that was designed for one thing, but has shown to also have positive effects in other areas of medicine as well.  
(As I always say, medications are masks - they are not cures.  If you have high blood pressure and take a drug to control it, you aren't curing your high blood pressure.  You are taking a drug that essentially balances out your high blood pressure!)   The reason you take any medication is because the potential gains (Good health!) may override the potential risks (You mean my skin may turn bright green if I use this medication long term?)  Bottom line is that Colleen is trying a few new things to attempt to get herself back into her old routines - she would take 5,000 masking drugs in one dosage every five hours if it meant she could have her life back.
3.  Pain management therapy - This is something Colleen has yet to try.  Pain management therapy is essentially a series of injections in what doctors call "trigger points".  I believe Dr. O'Brien-Clarke also referenced pain patches as a part of this therapy.   Colleen has a major trigger point on the left side of her body - a spot where she can feel the pain radiating from.    From what I gather, they would inject her in that area and evaluate whether or not her pain subsides.  
4.  The NIH registry study - Essentially, a series of tests not typically covered by insurance but are free to people who volunteer for the studies.  Although these studies are more in the Gastroparesis side of things, we have to remember that Gastroparesis has not been ruled out completely (just seems very doubtful) AND these tests can have benefits beyond just Gastroparesis.
5.  I have yet to really research this myself besides going to their web site, but there is an Integrative Digestive Disease Center at Johns Hopkins (http://www.hopkinsmedicine.org/integrative_medicine_digestive_center).  This is more in the "alternative medicine" vain.  Although Colleen has done the acupuncture therapy in the past, there are many things here that she has yet to try.  
6.  She also can schedule a neurology consult for autonomic testing.  The doctor recommended to us for that essentially has a 6-9 month waiting list, so if Colleen does decide to go in that direction, it will be a long while before we are able to actually get to see him.

Bottom line is that for all of the long hours we are on the road (and Route 70 truly is the worst, longest road in New Jersey history - don't even try to convince me otherwise.), the trips are worth it.  They aren't comfortable for Colleen given her illness, but they have purpose - they have meaning - and the pros greatly outweigh the cons.  Very few doctors we have seen gave us the feeling that the pros outweigh the cons - I can probably only name two or three.

I just hope one day we don't have to make them anymore - that the downpours subside, and the clear days outweigh the dreary ones until we get to the point where the dreary ones no longer exist.  For now, Colleen would accept incremental improvement.  Hopefully, one or more of the therapies above provide it.

I'll Have a Chocolate Chip Cookie With That.....

It has been a long time since I made a new entry here; unfortunately, it is not because Colleen is healed and life for her is back to normal.   Her symptoms have actually worsened a tad most days, and days that are defined as "pretty good" for her would be defined as "sick" for a healthy person.

There is always an inspiration behind my blog posts - something happens, and instantly a blogging idea goes into my brain, and off we go.   This past week, I left on a trip to Boston with members of my family to go see Fenway Park (more on that in another blog post coming soon).   Before the trip, I got into a random conversation with my niece about her baking prowess, and asked her to make me anything that has lemon in it (I can eat, drink, and sleep anything that has a lemon flavor to it).  Of course, the conversation lead to Colleen's favorite type of cookie - the basic, yet always a fan favorite, chocolate chip cookie.

As you may have guessed, Colleen ended up with a batch of chocolate chip cookies.  A simple gesture with very little planning involved - but sometimes, little gestures can go a long way - a long way to make a person feel at least a bit better about themselves, even as they battle a dreaded condition.  No, the first gift one thinks about for a person with a bad digestive illness is a plate of cookies - Colleen will eat them at her own pace.   That isn't even really important.    Sometimes, a gesture to show someone you care or thinking about them can go a long way in improving the mental side of things - even if only for a brief moment or two.

Now, if you are reading this from afar, I am not necessarily suggesting you run out to your nearest bakery to get a cake for your sick family member.   If they can't tolerate an occasional desert at all, then you really shouldn't feed the temptation.  But there are a lot of little things one can do to make life feel a bit better - a bit more special - for a sick family member.   Little things can go a long way - especially if the person you are caring for is too ill to do the big things you may have in your mind.

As stated above, Colleen's condition is not better - it is not improving.  As always, you look at someone with a disease like this from the outside, and you may not even realize just how much pain they are in - Colleen is on the smaller side to begin with, and because she doesn't get the bloat that some people with digestive issues get, she may look just as healthy now as you ever remember her. As I have said previously, if someone has a cast on their leg, you likely will instantly assume it is broken.   That person has a visual clue to lead you to what may actually be wrong with them.  If someone nearby is sneezing, you may conclude they have a cold - or allergies.  This time, your sense of hearing can lead you to a reasonable conclusion.  There is no sense that can lead you to a reasonable conclusion about someone who is sick on the inside.  They look normal, often act normal in an attempt to hide their illness, etc.  There is no visual clue sometimes - often, no audio ones either.   Someone on the street isn't going to walk up to her and ask "What is wrong?", because nothing even appears to be wrong.

But sometimes, we have to take a bit of a step back.  Look hard enough, and you will quickly see that the person is not looking quite as "normal" as you would expect.  There may be a look of defeat in their eyes - you may catch onto a vibe of despair, of frustration, anger - all kinds of emotions that sometimes you can figure out just by observation, even if they APPEAR to be normal.

Colleen has dealt with this condition for four years - she has been to at least ten doctors, various specialists.  She has tried various medications, has seen a chiropractor or two, a holistic doctor, and a few scam artists who pray on the sick in order to put some extra money in their own pockets.  (By the way, if you are a healthy person reading this and are saying "I would never fall for any kind of scam!", you may be in denial - a sick person has the mentality of "Well, maybe this actually will work - and I will never know unless I try it!"  Yes, that is exactly what a scammer wants - but there are legitimate people out there who aren't scammers who still try approaches that don't work - so figuring out the good people who just can't help vs. the bad people who just want to take as much money away from you as possible can be hard).  She has tried needles and aromatherapy - two tried and true methods that can get you real results - without any kind of relief.

Why is that?   We don't know - but there is one very real possibility:  We are fighting one thing, but the real problem is something entirely different.  If your car breaks down due to a dead battery, and the mechanic decides to replace your muffler, the odds are that the car won't work.   The new muffler may help the car in other ways, but it still won't accomplish what replacing the dead battery will accomplish:  Getting the car to actually start again.   That could be happening here - the things Colleen has tried (like the aromatherapy) are not likely hurting her system in any way - and could be improving something within her body as a whole.  But it isn't fixing the PROBLEM, because the treatments she has tried are designed for another problem that she doesn't actually have.   How do you figure out the exact issue Colleen has?  We have been trying to figure that out for four years now.  Maybe the doctor in Baltimore will get us there (We visit him again in July), or maybe he can refer us to someone else in his hospital who may start us on a new path.   Or perhaps we are actually on the correct path, but keep choosing the wrong fork in the road.   Whatever it is, things haven't improved  - that much is certain - and Colleen is left to fight a disease with every ounce of her energy, while also keeping a smile on her face and a good attitude despite fighting a true demon inside of her.

As a loved one of someone with any kind of medical issue, you need to be your loved one's advocate.  You have to make sure they KNOW you are on their side - that you care just as much today as you did a year ago.  Or five years ago.   You don't ever want your sick relative to have to worry about where you stand - because they have enough to worry about.   So keep fighting along side of them, go to every appointment you can get to, and let them know every day how much you love them.   In essence, you can be their chocolate chip cookie.

Another Trip Down I-95.....

On Monday, Colleen had her latest appointment in Baltimore.  As I have said a few times, the drive to Baltimore from New Jersey really goes by fast - there is one section of road (Route 70) which Colleen knows I am not terribly fond of - but the rest of the trip is fast and straightforward, two things that I like.   We hit a few traffic jams along the way, but we made it to the office only a few minutes after the scheduled appointment.

We saw Dr. O'Brien-Clarke rather quickly, as he didn't have his assistant by his side today.  We figured either she only observes during initial consults or is perhaps a student who observes when she isn't in class.       Once again, we left the office rather impressed.  I am officially at the point where I would say if you live on the East Coast and can get to Baltimore, this is the guy I would see if you have a bad motility/gastrointestinal issue.  No, he isn't a miracle worker who is going to fix you in five minutes - Colleen has seen him twice and isn't "fixed".    He simply has the perfect combination of bedside manner and knowledge.  Some doctors are nice, but don't really know what they are talking about.  Some doctors have knowledge, but lack general people skills.  That isn't the case with this particular doctor - he is both pleasant to speak with and knowledgeable.  Colleen threw a bunch of questions his way today, and he was happy to see that she was researching her condition. He was also happy to answer every question she had, and was able to give insightful answers to everything she had to say.

As you all know, we have run the gauntlet here - does Colleen have Gastroparesis?  Does she have something else?   The most important question I have, however, is:  Does it even matter?    Gastroparesis is just a label that is placed on a disease that has a myriad of different symptoms for different people.   Colleen may technically have it based on the fact that the definition is broad.  You can probably have one of 100 different symptoms, one test that is slightly (or worse) off-center, and boom!  You get the label.  

Imagine this scenario:
Doctor:   "Patient, you have cancer"
Patient:  "Where?  And how bad is it?"
Doctor:  "I don't know - this one test we have shows you have cancer, so we will go with that"

The day has to come when we don't just say "You have Gastroparesis", but we are able to go further than that:  "You have Gastroparesis - we know exactly where it is, what is causing it, and which treatment plan will work best for you".  There is one form of Gastroparesis that has some of those answers:  The diabetic variety.   If you have diabetes and Gastroparesis, you likely have your cause, for what that is worth.  But for other forms of the disease, there is nothing concrete on what the cause may be.  In Colleen's case, it may have been a virus that hit her a few weeks before the condition started.   But is there anyway to PROVE that?  Not really.

Here are a few others things discussed today:

NIH Trials - Colleen qualifies for trials being done by the National Institutes of Health in the research of Gastroparesis.   While these trials are not necessarily diagnostic in nature, the hope is that they can further understand the disease through some new tests and procedures.   Colleen is interested in it, and will be receiving more information about it in the coming days.  The tests are typically done over a two-day period with questionnaires that need to be filled out as she goes.

Bethanechol - This is a bit of an "old-school" type of treatment.   Used mainly to treat issues with the bladder, it also has worked to varying degrees for some Gastroparesis patients.  This is not a true "prokinetic" drug that increases stomach emptying, but stomach emptying is not the big symptom that Colleen experiences.   Its main purpose is to increase muscle contractions in the stomach, which could have some benefits for Colleen.  The worst part about this drug are the side effects (pain, for example) - the best part?  It works quickly.  Patients will know within a few weeks whether or not it is actually helping them.   The fact that the time commitment is relatively short makes it something Colleen wants to try out.

Her next appointment isn't until April.  In the meantime, she will try this new (which is actually quite old) treatment along with her Lyrica (which has done a great job managing her pain) to see if it makes any difference at all.

The Holiday Season Is Here.....

It has been a while since I have written an update, and I apologize for that.   Most of what has been going on with Colleen remains the same.  The Lyrica she has been taking has helped with her severe pain and cramping, so that is one positive - but, as is the case with many drugs, it is masking her symptom of pain, not curing it.  That said, if someone invented a drug that took away everything Colleen has been feeling, she wouldn't care if it was just a mask instead of an actual cure:  She would be able to get her life back.

We will be back in Baltimore on Monday, December 1st.  I will let you know what the doctor has to say.

When I first started writing this blog, I typed a few posts about the holidays and how they can be one of the toughest times for people who are chronically ill, especially with a never-ending stomach issue that has completely sapped you of all of your energy and your ability to do the things that once-upon-a-time were routine.  For Colleen, the routine would be baking a pumpkin pie on Thanksgiving Eve, baking cookies and wrapping presents on December 23rd, etc.  This is not to say she doesn't partake in other routines we have done through the years:  We do our annual "Christmas Light" tours around town (which is typically a mix of "Nice house!", "What the heck were THEY thinking?" and "Such a huge house - and they don't have one freakin decoration outside?")   Hey, it is the spirit of the holidays, right?   She also still does her outside decorating, typically on the coldest day of the year (not sure if that is just tradition or plain bad luck).

The point here is that for people who are very ill, sometimes the little traditions can still go a long way in an attempt to make the holidays feel "normal", even when they are not even close to being as normal as they once were.   

As a loved one, this may be tough to watch, especially if you are experiencing it for the first time: "Oh my!  He/she was once so into the holidays, but this year, they just don't have their usual spirit!"

What does the sapping of the spirit typically come down to?   Well, for someone with a sick stomach 24/7, the sapping of the spirit typically comes from the fact that holidays are filled with one more tradition: Food.  And lots and lots of it.  The very thing that helps bring families together during this time of the year is Kryptonite for many with Gastroparesis, or any disorder dealing with the digestive system.    

But it goes beyond that - because they can't eat like a normal person can normally eat, their energy is sapped.    And when their energy is sapped, it can affect their desires - think about the last time you went 24 hours or so without sleep.  That happened to me recently, and I was down for the count for 12+ hours when I finally was able to get to bed.  Now, you have to think about having that type of feeling almost constantly; a low energy level coupled with a bad stomach which could be leading to other issues within the entire body.   I always talk with Colleen about the "vicious" cycle - and that is the best way to put it.  When you have a disease of the digestive system, it doesn't just affect the digestive system - the human body is designed in a way that everything needs to work together in order to have a healthy outcome.  If one "switch" gets turned off, your body is "smart" enough to know to try to compensate - but just like in real life, that can only get you so far and eventually, the entire system starts going haywire.  

So, what does one do during the holidays if you are caring for someone with any horrible disease?  It is hard for me to speak about that in general, because everyone is different.  Even people within the Gastroparesis spectrum are different.    But just be aware that you should take care of the needs of your loved one, first and foremost.  If your loved one is too ill to attend a family get-together, you need to understand that, and not resent it.    What you can do (and is something I kinda like to do) is encourage the activities that your loved one can partake in RELATIVELY easily.    Whether it is going out looking at Christmas lights, or a stroll through a store, or whatever the patient is in the mood for on that particular day.   

The bottom line is to remember the fact that as hard as it may be to watch a vibrant, full-of-life person fall down due to a terrible disease, that the person suffering the actual disease still has it many times worse than you.    We all have little, petty complaints in life - heck, as Colleen knows, I still have mine.  But life should take on at least a bit of a new perspective when you are watching as your loved one is in bed, or throwing up, or feeling uncontrollable nausea, etc.  The list goes on and on - pain, feelings of fullness, nausea, trapped gas, not going to the bathroom for days at a time, etc.  Colleen doesn't suffer from all of that, but the symptoms she does have are still what I would consider severe.  And this is now a three-year journey - not a 1-week case of a bad flu.

Have a happy and safe holiday season - remember, you don't have to make a choice: You can have both a happy holiday season combined with the feeling of sadness that your loved one is not having such a happy season.    The bottom line for you is this:   Even though your loved one is suffering, you can still try to make it a very happy season for them.  Sometimes, the little things can go a long way.  And in the end, whether sick or healthy, aren't the little things typically what matter most?

Live Blogging From Baltimore: Upper Endoscopy and Endoscopic Ultrasound

11:15AM Arrived here in pretty good time.  Was expecting more traffic this time than last time, but it never materialized.    Getting into Baltimore is so straightforward.

11:30AM Automated check in?   Sign me up for that!     Such an efficient hospital.

11:45AM They have a big screen where we can track the patient's progress throughout the day.  Can we get ESPN on that?

11:50AM Colleen's procedure begins at approximately 1PM.

12:03PM Colleen has been taken back to get ready for her procedure.   Procedure itself takes about 30 minutes.   Prep and recovery takes about 40 hours or so.    It is like when you go to Great Adventure to go on a popular ride - a million hours of waiting just to get on the 2-minute ride.

12:06PM As for Colleen herself, she of course is a bit anxious about the procedure and wasn't feeling great this morning.  She got through the ride here OK though.

12:11PM So, what is the procedure Colleen is getting done?  This explains it better than I ever could:
http://www.medicinenet.com/endoscopic_ultrasound/article.htm

12:22PM The receptionist actually walks around to make sure everyone is being taken care of?  In Philadelphia, the receptionists were nice and all - but they were pretty much "Have a seat - we'll come get you whenever"

12:32PM A lot of people here.  Some are on their iPhones, some are on their iPads, a few are on laptops, and one is reading a newspaper.   There are also a few that refuse to give in to modern times and are actually reading books.  They still make books?

12:40PM Someone just asked the receptionist if she validates parking.  Yeah, and she can renew your driver's license while she's at it.

12:42PM I want to thank those who have been playing Words with Friends and Dice with Buddies as I wait.   Isn't Words with Friends interesting?  Something like SUQ is a word - meanwhile, WXTZ continuously gets rejected.

12:43PM This guy is behind me humming.  Rather annoying.

12:45PM This woman is showing around a new employee and told him one of his main responisiblities is to feed the fish.  I WANT THIS JOB!  

12:51PM I am bored so I decided to start liking a bunch of Facebook posts.   You just had a grilled cheese sandwich with your best friend from high school?  LIKE!

12:52PM So what did we do with the dogs while we are away for the day?  Josh and Jeter have full access to do what they want, while Alanis has to be in a crate...otherwise we'd probably come home to torn walls, torn toys, relocated furniture, and a missing sneaker or remote control.  She's a wild one, I tell ya.    We did block off the upstairs to "force" the boys to stay downstairs in her vicinity, hoping it helps keep her calm.  First time she has been home in her crate while both of us are out.

1:00PM I just read the Impusive Buy.  Archer Farms now makes a pumpkin doughnut muffin.  What in the heck is a doughnut muffin?

1:05PM According to the Big Board, Colleen hasn't yet been admitted into the operating/procedure room.....

1:26PM Colleen is now in the procedure room....fingers crossed.

1:34PM A pet peeve of mine is when someone sitting close to you decides to get on their cell phone to talk to someone about personal stuff.  Go outside, or hang up the freakin phone.  Of course, I can just choose to ignore...but what fun is that?

2:00PM The big board just turned red...indicating that Colleen Is in recovery....I will hopefully be called back there soon.

2:18PM Now in the recovery room with Colleen.   Sore throat from the tube they placed in her throat, and still barely awake.

2:40PM The nurse Colleen has is very nice and talking with us about the Jersey Shore.  Colleen's blood pressure is low...so we are waiting for it to normalize a bit.

2:50PM Doctor saw Colleen.  She has a small cyst on her pancreas which isn't considered much of anything.  They took samples for a biopsy, but those results are not yet ready.  We will find out in a few days.  As per usual, it is a relief that they didn't find some life-threatening condition - but still leaves the mystery on what is going on inside of Colleen.

2:55PM Last time we were in Maryland, we were caught by a camera that measures speed and got a ticket in the mail.  Let us hope that doesn't happen today.

3:00PM Blood pressure has normalized a bit.  She should get discharged shortly.

3:10PM We are on our way out....

7:00PM (or so) After waiting seemingly forever for some woman to pay for her parking, we got on the road and we are now home.  The patient is not feeling her best, but she got through the day, which is important in its own right.   The dogs were good - no accidents from our newest addition.  Josh and Jeter were their typical good selves.  More as we learn more - next trip to Hopkins is not scheduled until December.

A Summary of Sorts.....

Over the past three years, Colleen has gone through many different doctors, approaches, etc.  She has been through so much that sometimes things could even get confusing in this blog - mostly because we have done a lot of jumping around from one thing to the next, often ending up at the same point we started at.

And that is one of the major issues Colleen has been dealing with:  The fact that we can't even find the path for her to go down.   You can't run a marathon if you are having difficulty locating the starting line.

Here is a summary of a lot of the stuff Colleen has done over the past several years, and some thoughts about those things.  This is in no particular order.

Temple University (4 stars out of 10) - As a disclaimer, supposedly Temple has hired a well-respected doctor to their mix recently, but Colleen has obviously not seen him and hopefully won't need to.  I am basing my rating solely on her experiences at Temple.  It wasn't all bad - they ran a bunch of tests, and Dr. Fisher (who is retiring) did have a broad understanding of Gastroparesis and conditions in general.  What he couldn't do for Colleen is go that extra mile in an attempt to find out what was really going on.   They seem to operate under the assumption that tests will reveal all, and if they don't, they can't help you.   Bottom line?  I would probably recommend Temple to those who have a diagnosis etched in stone and need to know their treatment options.  If your condition is a little more complex than that, you likely will run into a brick wall.

William Van Wyck (7 stars out of 10) - He is our PCP, and he is a rather good one.   At this point, he can't be of much use to Colleen beyond giving out recommendations on specialists.   It is telling, however, that after a few bad experiences with "specialists", Colleen decided to go back to him.   Colleen is beyond what he can do at this point, but as a PCP, he does a good job.

David Kleinman (0 stars out of 10) - Colleen wanted to get an endocrine doctor's perspective on her condition, and ended up running into the worst doctor I have ever experienced in my lifetime.  No knowledge of anything that I could see, mixed up Colleen's chart with someone else's, and (as we found out later), ordered a test to check Colleen's cortisol levels that was NOT A VALID TEST for her to have.  Completely and utterly useless - I don't know how he is even in practice.  If he had good bedside manner, I would throw a star or two his way - but he doesn't even have that.

"BodyScan" 2010 (0 stars out of 10) - There are people out there who simply love to profit off of the sick - I hate to even think that this is the case.  That people who have these types of devices actually do think they are helping you, when the reality is they are not.  They have you sign forms that basically say what they are doing is not meant to treat, cure, etc. any diseases.  Then what is the point of your "practice"?  Here is what they do:  Hook you up to a computer, watch as results pop up on the screen, recommend marked-up supplements that they conveniently carry, etc.  He even told Colleen he can do a procedure (hernia adjustment) that he really couldn't do (and didn't do when Colleen went there specifically for that purpose)   He tried to claim that Colleen had all of these other things wrong with her not related to the stomach, but as soon as Colleen told him her stomach was giving her problems, suddenly his "tests" showed that her digestive system wasn't right.   I try to be an open-minded guy, which is why I too can fall into these traps - don't do it.  If anyone guarantees you that you will get better or tries to sell you on how many other people they have helped from all over the world (don't dare ask to talk to those people - perhaps we should have asked), run away.   There is no procedure, device, etc. in the world that guarantees anything when it comes to a health problem.

Acupuncture (8 stars out of 10) - During the first round of Colleen's journey, acupuncture was the one thing that seemed to work quite well for her.  However, after she was "healed" and feeling better, she was attacked again by this mystery ailment, and acupuncture did not help as much the second time around.  I do think there is a place for this, however, and would recommend it to anyone who wants to try something "alternative" that isn't too far off course.  Many western doctors now accept it as legitimate, and Johns Hopkins even has an acupuncturist on staff and is willing to share his protocol to any local acupuncturist you wish to use.   That is the key - making sure those needles are hitting the spots that truly need to be hit.

Prosperity Health Center (7 stars out of 10) - Unlike some places (such as the BodyScan above), this center doesn't make any guarantees that you will "cured" within X number of weeks or months.  What they can do is get you on the right track for healing through various techniques, including acupuncture, chiropractic care, and herbal remedies.  One of their mottos is that they don't try to relieve your symptoms - they try to improve your life by using some of the techniques above.  I think they are very reputable, that the staff is extremely friendly, and Dr. Kuan is more than qualified.  Colleen doesn't go here anymore, mainly due to the distance but also because she wanted to try something different locally.  Plus, some of the herbal mixtures she was given caused some problems with pain after they did their job.   I would still highly recommend them, because it most certainly does not scream "SCAM!"   Colleen had paid for future visits before deciding to not go anymore, and they gave us a full refund.

Johns Hopkins University - Dr. O'Brien-Clarke (9 stars out of 10 - but still incomplete) - We have only been here once thus far, with a second appointment (for a test) in a few weeks.  Based on the one visit, you can see why they are often rated among the best (if not THE best) hospitals in the country.  The staff is extremely friendly, the doctors are very knowledgeable, and they have a solid system set up that makes sure the doctor has all of the information in his hands before he even comes into the room to talk to you.  I loved this aspect.  You get 30-35 minutes of a doctor's time, if you are lucky - you want it to be useful to you AND him - not just a rehash of your prior medical history.   We don't know yet how this story will end, but I do like the facility and the fact that the doctors are willing to think a bit beyond just a test score.

Stanley Hsu (0 stars out of 10) - Gastroenterologist that Colleen saw earlier in her journey.  I can't comment on how he is with other conditions, but he knows nothing about Gastroparesis - his first comments were about how young Colleen is (Gastroparesis can strike anyone of any age). He followed that up with comments about her not being diabetic.   It is a condition common in diabetics, but is not restricted to them.  Overall, a waste of our time - but I can't comment on anything else he specializes in.

Diane Fresca (8 stars out of 10) - Our second endocrine experience was much better than our first.  Even though Colleen's condition appears to be digestive related, Dr. Fresca still took her seriously, asked a lot of questions, ran a battery of tests - and also explained some of her thoughts on thyroid disease.  She did a complete thyroid panel (which came back clean), plus ran a test for a rare stomach condition that I assume came back clean.   She is also the one who pointed out that the cortisol test Colleen did was the wrong test that would not give an accurate profile of her true cortisol levels.  She ordered the GOOD test, which Colleen still hasn't had.  So, even though Colleen may not have an endocrine issue (we still aren't sure), I will still recommend this doctor - she knows what she is talking about and has good bedside manner.

Teresa Tacopina (6 stars out of 10) - She is Colleen's local gastroenterologist, and the doctor she has seen the most about her condition.   While probably not an "expert" on Gastroparesis, she also is not a novice - she has treated many with Colleen's condition.  Her bedside manner is good, and she is willing to think outside the traditional box (even recommending acupuncture early in Colleen's journey).   She loses a few stars due to a recent appointment, where she prescribed Colleen a drug that Colleen already tried and rejected. (It wasn't the same drug - but it was in the same class).  By the same token, Colleen asked her if she could attempt to try a different drug she hadn't tried before, and Dr. Tacopina obliged  I guess in this case, there is some good and some bad - but as a primary, local gastroenterologist, she is more than capable.

Russell Mariani (2 stars out of 10) - This is the first person Colleen encountered when seeking a more "radical" approach to her condition.   The cost is high, and he doesn't really offer many insights that go beyond what you already know.   So, his "program" is good - it isn't junk science or voodoo magic, but it is also rigid, and he has the personality of "my way or the highway", which is a bit obnoxious when he charges such insane prices to get on his program.  If he is unwilling to adjust based on each individual need, it becomes a situation where his program will help a few - just like the broken clock being right twice a day.

Essential Oils (No rating) - Have essential oils helped Colleen?  It doesn't appear to be the case - though they have helped others with a variety of conditions beyond just digestive issues.  Because of that, I can't say it is a big scam unworthy of your time.  All I can say is that they haven't really done much good for Colleen's particular condition.   If you need to try something new and different to potentially get relief from what ails you, it can't hurt to try them - and because I don't see them as a voodoo scam, I would even say they can help people - just not everyone.

There may be other people Colleen has seen that I have already forgotten about - there have been so many, after all.  There is another doctor she saw in the beginning of her journey, but I forget his name.  He knew a lot about Gastroparesis, but was trying to sell Colleen on getting the pacemaker which she likely does not need.

As I have typed many times already, we don't even know exactly what Colleen has - and that is the major sticking point we have run into through the years.  We are hopeful that Johns Hopkins will figure something out for her.  Only time will tell there.

A Trip to Baltimore: Best Doctor to Date by a Longshot

Over the past several years, Colleen has cancelled an appointment or two at Johns Hopkins in Baltimore, and for good reason:  The drive is long, she has been consistently sick, and she thought she was under the care of a top physician in Philadelphia, which is a fraction of the time that it takes us to get to Baltimore.

Our house is just under 3 hours or so from Baltimore - at least to this location in Baltimore.   Her appointment was at 8AM, meaning departure time was at 4:15AM.  In the end, we actually left closer to 4:30AM after we got ourselves situated in the car before leaving on our journey.  Colleen and I are night owls, and I often don't fall asleep before 4AM, never mind waking up at 3:30AM for a trip to a place we have never been before.   Colleen says she barely got an hour of sleep - I likely got 2-3, if I was lucky.   

The best part about this trip is the ease - getting to Baltimore requires no special instructions beyond getting on Route 95 and just driving...and driving...and driving.   Johns Hopkins is right off of an exit - no twisty roads to navigate.  You get off the exit, you are pretty much there.

The facility itself is impressive - it is modern, it is clean, and the people are beyond friendly.   I even asked Colleen if the staff there is paid to be friendly.  Not only did a woman ask us if we were lost trying to find the reception desk after seeing the doctor, she even walked us there!   What is that all about?  The receptionists are all nice, the nurses don't act as if they would rather be elsewhere, the doctors are personable.  It was like we drove into some sort of alternate universe on our way to the hospital.  We have not, in our journey, met up with a nicer set of people.

Colleen was checked in without a hassle, and saw her first nurse at around 8:05.   She has a thankless type of job.  Take your temperature, your weight, your blood pressure, enter information into the computer.  She sat longer with Colleen than most of her DOCTORS to date did.   That was amazing to me at least - the doctor would be armed with information before he even walked into the room.  In Philly, Colleen had to continuously repeat her medical history to the doctor every time she went.

She next saw a nurse practicioner, who did a remarkable job of talking to Colleen about her condition.   Seriously, this young lady knew more about gastrointestinal conditions than some of the "experts" we have seen.    She was thorough, listened to everything Colleen had to say, allowed Colleen to ask questions, didn't brush off any of Colleen's concerns, and even knew of treatments that Colleen had yet to try.   This was no standard nurse coming in to ask the basics; if the appointment ended with her, we probably would have been satisfied - that is how good she was.

After a good 30 minutes with her, she took all of the information she gathered and discussed it with Dr. O'Brien-Clarke.  This was BEFORE the doctor even walked into the room.    This is how a hospital should be run - let the experts walk into the room armed with all of the information in hand.  The doctor should walk in with a general idea of what he is going to do or recommend before he even talks to you.   This way, he isn't wasting time asking you a million questions about your history - he can spend the 30-45 minutes with you discussing your condition, what he recommends,  answer any questions you have, etc.   I can't say enough about how professionally run this operation is.  I would recommend O'Brien-Clarke to anyone with a gastrointestinal/mobility issue - that is how impressed we were with the first visit.  

As for Colleen, there are other treatments she can try and other tests she can have run.  Her next big test will be an endoscopy with an ultrasound component, which she has never had before.   It is an outpatient procedure in Baltimore.  We don't yet have a date for that.  For now, she is going to try a nerve pain drug that is typically used for other conditions but has shown to help some with conditions similar to Colleen - the drug itself is Lyrica, though one potential issue we ran into is that there may have been a mixup between the doctor and the pharmacy, as Colleen actually has a different drug in her possession right now.  It is possible also that we misunderstood which drug he wanted to start Colleen on first, as there are a few she can potentially take.   One class of drugs has similar properties to other drugs Colleen has taken but have shown to have lesser side effects.

Not once did this doctor suggest to Colleen that this is in her head.  Not once did we hear that from anyone today.   The bedside manner of this doctor and his nurse practitioner was just amazing - Colleen, who is an anxious person, was so at ease that I didn't even need to mutter a word.  She had it all under control.  And the credit for that goes to her (of course) but also the the way the staff treated her and made her feel as if she was a person, not just a name on a medical chart.

He is also a progressive doctor who isn't afraid of alternate treatments - they even have a person who does acupuncture on site, and have a specific protocol they are willing to share with anyone local to us to help treat Colleen.  Not being afraid to think outside the box is a welcome sight.

So, do we have answers for you today?  No.   But we weren't expecting a miracle - we were expecting a fresh start from a new doctor, and that is what we got, plus much more.  You can just tell this doctor doesn't just read from a textbook - he studies this stuff, gets involved in trying to find new treatments, etc.  There is even ongoing medical trials going on for some patients that he made us aware of, but we aren't yet going down that path.  All of this is stuff any "expert" should know, yet this is the first doctor who has brought it up to us.

I wish he was closer - not because I hate the drive, but because if he was closer, we likely would have seen him much sooner in our journey.

Oh, and as I told Colleen on the drive home, today marked a record for me:  longest distance I have ever personally driven.   I am also happy to report that Colleen drove the entire way home, which can be a challenge for anyone who is very sick.

As one more aside, I created an iPod playlist for the entire round trip.   I mixed up a bunch of my favorites (ok, mostly Alanis and Christina Perri) with a bunch of songs I thought Colleen liked.  As it turned out, I am not sure which Madonna songs (Colleen's favorite artist of all-time) are her favorites.  I think I picked two out of a dozen or so that she said she would have chosen if she made the playlist.  Just remember - no matter how much you think you know about your spouse, there is always more to learn.