Sunday, April 28, 2013

Back from Vacation


While I was gone my GI doctor and my surgeon called to discuss the surgery and setting up the appointments.  I came home to all my documents in the mail.  To be honest I feel more at peace now that everything is set and in place.  There is no more worry about approval or waiting game on a date.  I set up my pre op appointment and all my follow up appointments.  I am still really nervous, but I think it really isn't going to hit me until I am going under or maybe when I wake up and realize there is something under my skin!  I am a little worried about how it is going to feel and if it is going to bother me.  I am not sure if I will be able to feel it at all, but I am pretty sensitive to changes in my body, so we will see.  I think I have most been worried about that portion, what life will be like afterwards.  I guess we will see what happens, just happy it is one less thing I have to worry about until the day comes.  For now I am going to focus on getting in good shape to make sure the recovery and surgery goes smoothly!

#EnterraTherapy #Gastroparesis

Tuesday, April 23, 2013

June 28th

The date has been set, June 28th.....I was hoping for July, but the doctor said it would be better if I got in as soon as possible.  I set up my pre-op and everything that goes with it, so nervous!!  It is all set in stone now, no turning back.  I know I can get through this, just nerve wracking thinking of how real it is, also that it is being pushed up a month.  I got the pre-op visit scheduled, now to just work on getting a perma baby fix, which is the part I am really dreading and not looking forward to doing, I guess I can't put it off now that I have the surgery scheduled.

#EnterraTherapy #Gastroparesis

Sunday, April 21, 2013

Liquid Diet

Things have been so crazy and stressful lately, which aggravates everything, so I have been reduced to a liquid diet.  This happens a lot more as the more time goes on, so I go on and off these diets as my body allows.  The past week or two I haven't been able to eat anything for the most part besides liquids and even those sometimes cause me problems.  It really sucks because I always feel good, but then I eat food and it just spirals within ten to twenty minutes after and I get extremely sick. The only awesome thing about a liquid diet is an excuse to drink a million smoothies, the downside ensure.....nasty, that stuff is so gross!!!!  Hopefully I can pull out of this before surgery, otherwise it is going to be a long long road to July going just on a liquid diet.  Here is to hoping I feel better in a week or two and can eat real food again.  I am sure this is going to make me lose a lot of weight though, sigh, thus is life, it is just hard because I have less and less to lose.

#EnterraTherapy #Gastroparesis

Thursday, April 18, 2013

26

Never thought I would say this, but 26 is the year that is going to change my life.  I honestly hate getting older in general, but this year is going to be different in many ways from any other year.  This is the last year I celebrate my birthday being sick, hopefully!  I'm not going to lie when I got the letter I was a little bit in shock, but I am ready to move forward with my life now.  I haven't gotten the call from my doctor to set up the appointment, but I assume it will come tomorrow or next week.  Reflecting back at things it is just crazy to think how much will change in the next year.  I wouldn't say life was a walk in the park in most aspects up to this point, but it will feel amazing to feel like one thing isn't flawed anymore.  Slowly working on improving the negatives in my life to positives :-)

#EnterraTherapy #Gastroparesis

Wednesday, April 17, 2013

It's Official

Here it is, the letter, the approval.....
I actually was a little thrown off when I got this today, I thought it would take forever.....I am sure my doctor will be calling me in the next couple days to finalize plans and schedule the surgery.  To be honest, I am still completely in shock at how fast that happened, my doctor must write persuasive letters.  It also hasn't felt so real until now, I thought it was going to get caught up in appeals and take forever, I had essentially put it out of my mind!  Now to prepare, so much to do, I don't even know where to start, I guess maybe just start at settling on a date for the surgery, still shooting for July at this point, but we will see.

#EnterraTherapy #Gastroparesis

Monday, April 15, 2013

The Depression Sets In

Everyone keeps praising me for being so strong in the face of getting Enterra Therapy, but honestly, I'm not perfect, I am depressed.  I honestly have woken up almost every day and it has been hard to keep a smile on my face.  I am absolutely shutting the door on basically the one true dream that I have.  I purport to the world that I am ok with it, but honestly, I'm not.  I think it is partially just the stress of school, work, raising a child in their terrible 2/3s and dealing with facing this, plus a whole host of other little things.  To be honest, it is all wearing on me, luckily I am almost done for the semester, but I also have three summer courses, then the surgery, then back at school again.  The upside is that I only have a year left, so I just keep telling myself that, do not quit now, you are so close!  The other downside I am really struggling with is that I am going to be alone in all of this, my family is my family, but nobody is ever there for me when I need them, if they read this I know they will argue with me and such, but I don't care.  When I got my gallbladder out, I went into surgery alone and woke up alone, I am about 99% positive that will happen this time as well.  It really is hard to know I can't (well highly highly highly advised against) have kids anymore, but then to also have that sinking reality that I am going to be alone in this.  I am going to sit in my bed for the week after surgery and nobody is going to help me, nobody will probably visit, just like when I had my gallbladder surgery.  Those are the weeks when I wish I could work because then I am around at least people and can feel somewhat normal.  I have always had the outlook on life that if I keep pushing through things will get better, but somehow this to me almost seems like putting the nail in the coffin on some of my dreams in life.  I always thought I could achieve that picture perfect even with all the flaws and scars in my life, but honestly that can't be a reality for me anymore, I can try to find a semblance of picture perfect, but it won't ever be how I imagined.

My friend posted a list on facebook called the 21 Tips to Keep your Shit Together when you are Depressed, it really has been helping me try to put a positive perspective on things again http://www.diycouturier.com/post/47249603128/21-tips-to-keep-your-shit-together-when-youre
It actually came at a time when I really needed it.  I have always been a positive person and I am just in one of those times when I am going through the process of pulling the pieces back together from another blow in my life.  I promise this won't be permanent, things always work their way out in my mind somehow, so the ends justify the means.  This is the problem with being a logical person, I need to find a way to balance of the positives of getting this surgery and the negatives of what it means for my life.

#EnterraTherapy #Gastroparesis

Sunday, April 14, 2013

The Waiting Game

So at this point I am waiting, for insurance to come through and until July rolls around.  It is tough because I keep rolling the decision around in my head.  The times when I am feeling ok, I wonder if I should do this, then of course I go and eat some food and can barely eat and get sick.  It is crazy to me, since all of this is normal to me, it is normal to never have hunger pains, it is normal for me to forget to eat and it is also normal to me to get sick, so I always eat food strategically, so I am either at home or leaving where I am at soon after or I double up on medications hoping they actually work.  Ironically, my doctor told me when I went in that all my drugs counteract each other, so I have to take them at intervaled times with each other, so they will work, it is crazy taking drugs pretty much every hour of every day because if I took them all together none of them would work.  I am partially worried about taking care of Loki after, how long really is the recovery before I can fully take care of him again, I know my recovery from surgery is 1-2 weeks, but how long before I can run again or carry him around, those are the things I am most worried about.  For now I am just waiting for things to move forward.  If any of you know me well, you know I hate being in limbo and that is exactly where I am right now, it is driving me crazy!

#EnterraTherapy #Gastroparesis

Tuesday, April 9, 2013

The Surgeon

So for the record almost every surgeon I have met is a complete asshole.  Of course this guy was no different, but my friend reminded me that all surgeons are just that way, they choose that specialty because they don't have to deal with people, they are just there to cut the holes.  He could tell I was stressed and hesitant to be there because I tend to mess with my hands a lot when I am nervous, so he started questioning whether I wanted this, but when I explained that my heart doctor thinks that this device could also cure the issues with my heart, he changed his tune and talked about how so many people have found success with the Enterra Therapy.  That made me feel a little more at ease, but in general I just feel almost like I am not sick enough to get this, but my friend told me, do you ever want to get that sick, it sounds like you are almost to that point of feeding tubes and such, so this is going to stop that from happening.  I thought about it and said yeah you are right, it is hard sometimes to see myself on the outside because it has been so long that I have just lived with this, it is just normal to me.  He said, "you know almost every time I talk to you, you say that you aren't feeling well or are feeling sick."  He is right, I am sick every single day even after taking my medications, I have just grown so used to it over all the years it is just normal to me.  I also thought about how I avoid doing certain things or avoid eating out over the fear that I will get ill.  I want to be able to go out and not feel ill and not have to worry about getting sick.  I am horrible at minimizing things in my life, I partially do this so I can function and not dwell on things and let them run my life, but sometimes I guess I need to step back and really see how bad some situations are and how they do affect my life.

I called my GI doctor after my appointment because the surgeon said most of the time people don't come to see him until insurance has approved the implantation, so I wasn't 100% sure if I had to do anything more.  The GI office said the doctor submitted all the paperwork to Medtronic who does the advocating with my insurance company for the Enterra Therapy.  It is a relief to know that they do this for you, I worked for an insurance company, I know how brutal they can be.  I am hoping that goes quickly and I do not need to worry about that much longer.  The surgeon said he isn't sure why it is a huge deal to insurance companies because compared to other medical devices the cost of this device is fairly reasonable.  I used to work at Boston Scientific in the Cardiac Rhythm Division, so I know how expensive some of the heart devices can cost and it is steep in some situations.  I am hopeful everything goes smoothly, but we will see what happens.  My GI doctor is pretty confident though that it will be approved by insurance, so crossing my fingers that I am not waiting too long!

#EnterraTherapy #Gastroparesis

Monday, April 8, 2013

Neurocardiogenic Syncope

I got a third opinion on my heart today, since the U blew me off and Mayo is dragging their feet.  I am so glad I went and got this opinion though because the doctor really put my mind at ease and finally closed the book for me on my heart issues.  She stated that based on all my records that my heart problems are neurocardiogenic syncope caused by my stomach issues.  This is the connection I have always been looking for.  I also am feeling more confident in getting the Enterra Therapy because she said that if I can fix the stomach problems, the nerve that Enterra stimulates is also the same one aggravating my heart, so it should fix both problems.  Downside is that if it doesn't work, I have to go on more medications, oh well, thus is life right.  I am just glad that I can finally close the book on my heart issues for now. :-) Small victory in some ways right?!?!?!?!

This is making me hopeful that I can have a "normal" life after I get this device.  I am losing a lot, but I am also gaining my life back, no more feeling ill for the most part.  It feels nice to think that I may be able to function at 100% at some point.  I know there are no guarantees, but I am holding out hope. :-)

#EnterraTherapy #Gastroparesis

Sunday, April 7, 2013

The Plan

So far this is my current plan.  I am meeting with my surgeon on Tuesday to get the final go ahead to get the surgery.  However, I will be putting it off until July, when I have a lull between summer classes and the fall semester.  It is going to be a tight fit considering the only time my GI doctor can do it in July is the last week and I start school in August, yikes!  I have been so busy trying to move things and create openings at work and finding care for Loki just to free up July.  The sheet that my GI doctor gave me said that the surgery requires a two to three day hospital stay and one to three weeks of recovery.  The worst part is probably going to figure out where Loki is going to land during that time because I assume I will not be able to take care of him until I fully recover.

I also have to work through the insurance fight.  My doctor said it will take from one day to several months to get insurance approval.  The reason why Enterra is not covered is because it has a HDE (Humanitarian Device Exception).  The FDA is unable to approve this device for full approval because it is used rarely to treat a rare condition.  If there are less than 4000 implants a year the FDA can only approve the device for HDE because there are not enough cases to establish an appropriate analysis of the potential side effects and effectiveness of the device.  The HDE is an approval for people to get the device as a last resort, you have to have gone through all the available drug therapies and prove that they do not work to receive the device.  Obviously I have been fighting this for years, but the insurance company needs tons and tons of proof to establish that they want to pay for an excessively expensive device.  The awesome part is that my doctor said that Medtronic will do all the insurance leg work and that they have a whole group that basically does just that.  I was so relieved to find out I wasn't going to have to fight with an insurance company (one I used to work for lol) to cover my device.

My assumption is that I will be setting an exact date very soon, so I will keep everyone up to date, but for now I am looking at the end of July time frame.

More information on HDEs:
http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/HowtoMarketYourDevice/PremarketSubmissions/HumanitarianDeviceExemption/

#EnterraTherapy #Gastroparesis

Saturday, April 6, 2013

Here goes nothing!

As I promised, here is my blog documenting my journey on getting Enterra Therapy.  First, a little background.

I have gastroparesis (GP), as far as they know I was born with it and it is idiopathic.  I had issues when I was young, but nothing too horrible.  Things really didn't start to deteriorate until my pre-teen years, up to that point I dealt with the issues through over the counter medications.  My mom kept telling me to go see a doctor about it, but she scared me because she said I would have to go get all kinds of tests that I wasn't ready for.  I finally caved though when it started to make me miss school.  I quickly got on board with the best GI practice in the state, since my general practitioner was very much baffled as to what was wrong.  After I started at my GI specialist it basically took years and years of medications, tests, etc. to finally land on the conclusion that yep this is GP and there is nothing we can do about it.  There are only three medications that you can take to treat GP, one of which is not approved for market by the FDA in the US.  I first went for the Erythromycin, but had bad side effects, I then went on to Regulan, which I found out I was allergic to.  By the time those two drugs were ruled out, I was in college, so this was about 05/06.  I went back in and they said that they are going to treat me symptomatically at that point, since I was able to stay out of the hospital and maintain my weight.  It worked out for quite a few years, my weight would go down, but I would push it back up, it was always a struggle, but I followed the diets they gave me and took my meds.  All of that changed in November 2011, I absolutely remember the day I went into the ER in extreme pain, not even Morphine could take it away, I had to have Dilaudid just to knock me out.  That was the beginning of three straight months in and out of the ER, the hospital and stacking up my medications to the point where I was on about 13/14, some of them just being prescription strength vitamins from my inability to eat.  I can honestly say that is was one of the worst times in my life, I couldn't eat or drink anymore, I lost 20 lbs, most of them in the third month because I was starving to death.  One day in February 2012 I finally collapsed at work and that was the end of it, I went into the hospital and honestly, I wasn't sure if I was going to make it out that time, I was in such a haze after three months of  starvation and dehydration.  Luckily, they found the source of my problem, finally, my gallbladder had died and when organs die they expand and attach to other ones and basically it was wrapped around my other organs and squeezing them.  After untangling everything and taking it out I thought everything was over.  I did get drastically better, but the toll it took on my body was just too much, I ended up with bile dysfunction and what is now suspected to be damage to other areas.

In July 2012 I took a trip to Vegas, I was passing out a decent amount and my friend was worried, so I told her ok ok I will go to the doctor to make sure I'm ok.  Of course in Vegas the Urgent Care doesn't do blood work, don't ask me, so they said oh just go to the hospital and they can do it for you.  I said ok whatever, it was annoying, but I went.  I was sitting in the ER waiting for them to cut me loose when they came in and said, your heart monitor has been going off, you look like you are in AV Nodal Block 2, if you hit a Level 3 you will be in full cardiac arrest, we cannot let you leave and get on your plane tomorrow in case you hit a level 3 on the flight and die midair.  I thought the gallbladder thing was scary, I cannot tell you how scary this was, all that was running through my head was that I wouldn't get to see Loki one last time.  They said they couldn't do testing until the morning, so I basically didn't sleep at all that night, my heart rate was dropping into the low 30s and my BP into the 80s/50s & 60s.  They got me up bright and early from my sleep and ran me through a million tests to make sure I was stable enough to fly home.  Luckily, I was stabilized and sent home on my flight to go see the heart doctors back home.  I am not going to lie the individuals that work at St. Rose Dominican- Siena were a God send, such amazing people working so hard to make sure I could get home again.  This of course led to tons of tests, doctor appointments, some new medications, ER/hospital visits, neurologists and then to Mayo.  Needless to say, the reason why I go in and out of arrhythmia is still a mystery that I am trying to figure out, but the doctors aren't alarmed anymore because my body will kick itself out of the arrhythmia after a couple days to a week.

That basically leads to the now.  Since I go to one of the best GI doctors in the state, it takes me months and months to get an appointment.  I finally got in to see him because things were not in control anymore and I started to see myself having a hard time maintaining my weight.  I knew this was coming for years, but I walked in and he said "we have been working on this for years and the past year has been tough and we aren't seeing improvement anymore.  I know this has been mentioned many times in the past, but I now think our only option is the Enterra Therapy system."  I should have seen this coming, but I almost felt blindsided by it for some reason.  It was just not something I really was expecting.  He said "the heart problems are most likely being triggered by dehydration and/or nutrition problems, the bile symptoms and the medications for it complicate the GP, which makes it much worse and the test results are turning up worse and worse as the years go by.  After seeing the results from the most recent test at Mayo, you will need to consider this therapy."  (FYI these are all massive paraphrases, but just so you get the gist)  I of course ran back to work and researched and researched, called the surgeon and the patient coordinators to get more information.  I finally came across the one thing I dreaded, because this is placed in my abdomen and the shocks are in my stomach, I am highly highly highly discouraged from having a child and getting permanent birth control.  Basically, I cannot have any more kids without it being a very very high risk pregnancy, to be honest, it completely broke my heart.  I know there will be haters that say, well whatever you can adopt and there are women who can never have kids blah blah you should be lucky, but to me it isn't that, it is just that I always had this perfect vision in my head of meeting someone else, falling in love and giving Loki a sibling, having the picture perfect normal boring life that I want.  I admit that Loki may have been my only kid and this wouldn't matter, but the thought of losing the chance is heartbreaking.  I have such a huge love for children though that I know I will be able to adopt and/or love my significant other's kids just as my own, just like I love Loki, so I have come to terms with it.  This is just the start of my journey, I will write more later as it comes, I think this is enough to digest for now :-)

Also, for those of you that don't know me super well, this is hard for me to write because I downplay these problems every day.  I hate when people define me as being weak or disabled or what not, I still try to live my life to the fullest extent possible and I do not let any of this define me.  Bottom line, if you want to know more, ask me, I am a completely honest open book and I will answer everything to the best of my ability. :-)

My life is not what I ever envisioned it to be, but it is perfect to me.

Here is the Mayo page on gastroparesis, if you really feel compelled to learn more: http://www.mayoclinic.com/health/gastroparesis/DS00612

Here is Medtronic's page on Enterra Therapy:
http://www.medtronic.com/patients/gastroparesis/device/what-is-it/

#EnterraTherapy #Gastroparesis