Linda F.

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I know, I know - it's ridiculous that I have not posted anything in almost a year.  I realized that I haven't updated this blog is I had my surgery (almost a year ago).  Mainly because my road has been extremely hard and I have regrets everyday.  Since I pretty much put my whole story out there as a reply to a poster, I am going to cut and paste it here:

Let me tell you about my experience, which may help you a bit (or not).  I had a RNY revised to a DS in April of last year (by Marchesini in Brazil).  I ended up with a fistula.  He tried to talk me into doing exactly what Dr. G is wanting to do for you (just the bottom portion of the DS), but I insisted that I wanted the whole DS.  I also had an stomach that was just stapled and not seperated.  So he basically took down 13 years of staple-line to create my DS stomach.  He warned me of leaks and fistulas.  Of course I figured that happened to "less healthy" people, and older people, and certainly NOT me.  Well, on april 18, 2010 I had a successful DS.  On April 22, 2010 I was released from the hospital and later that same day I was brought back to the hospital by the doctor (who personally picked me up from my hotel room and drove me).  It turns out that I developed a fistula.  I spent the next few days in the OR and getting X-rays and tests, etc.  Then I became septic as the stomach fluid had leaked into my body cavity and caused me to be septic.  I spent the next 13 days in a coma.  During the coma, my kidneys shut down, my heart rate was uncontrollable and essentially the doctor contacted my husband here in Florida to come down to make end of life decisions.  He couldn't do it - so my father came down.  It took him a little over a week to get there, as he had to get an emergency visa, etc.  Thank God, the day before he got there, they were able to wake me (on the 3rd try).  So my dad didn't have to witness me in a comatosed state.  I spent a total of 69 days in a hospital in Brazil before I was well enough to travel home.  It was horrifying.  Not the medical attention that I received, it was phenominal!  but just the fact that every day that I was there I was away from my family (my 5 year old daughter).  I truly thought that I would die in Brazil and would never see her again.  But I did make it home.  I was home for about 6 days before I was admitted to Tampa General because the fistula was now leaking out of an open wound on my stomach.  Stayed there for 4 days for testing and such.  I was unable to go back to work for about 5 weeks after that.  I got back to work - because I had to, I am self-employed and we were running out of money - as the additional costs of hotel and hospital fees in Brazil added up over $200K that I didn't anticipate and my insurance didn't cover a bit of it.  I now owe my parents $71K that I had to borrow from then to pay the bill while I was there.  I went along OK for the next few months, then fast forward to January 13th of this year, I went to the doctor for a follow-up and he immediately admitted me.  I was in the hospital here for 6 and a half weeks because the fistula had leaked again and into an abscess that my body created and the abscess had infected my diaphragm and destroyed my left diaphragm - it also infected my left lung.  I had to have the lower lobe of my left lung removed on January 18th, the cardoithoracic surgeon was able to save the rest of my lung - even though it was infected.  Since then I had to have 2 endoscopies where they tried to fill the fistula with glue and clamps  (neither worked), 2 additional surgeries to clean up infected and try to repair the diaphragm and insert and reinsert chest tubes and feeding tubes.  I have been home for 3 weeks now.  I am on TPN for nutrition - have to have on 24/7 - carrying around the bag and the pump everywhere I go, I have to take pain meds every 4 hours like clockwork, or else I am in so much pain, that I can't function, which is injected directly into the feeding tube that goes directly to my stomach, I have a chest tube, which is constantly draining into a bag that I have strapped to my left leg.  I go in tomorrow for another CT scan and fistula gram - to check to see how much I am still leaking and if there are any additional issues that they have to deal with.  I am going to try to go back to work for a few hours next week - because again, we are out of money - not only on the personal level (my husband makes a decent living, but we've always been a 2 income family and are barely hanging on with just his income) - but also my business is about 1 month worth of expenses away from closing up my practice.  Even though i haven't been working, the expenses are still there - still have to pay my assistant, paralegal, and overhead.  So basically, in the past 11 months, I have been in the hospital and/or unable to work for 6 of those months.
I am not telling you this to scare you, but at the time I has my surgery, there was another american down there, who was also a revision, and he decided to go with just the bottom half of the DS (and leave his pouch in tact) - and he has had NO complications and has lost just about as much weight as I have.  You want to think LONG and HARD about this.  If your doctor is being cautious about it, there is probably very good reason.  I know a few other people that have had fistulas because of revisions.  PLEASE think long and hard about this.  I almost lost my life over this decision I made.  I also was prodded by people on this board prior to my surgery to accept "nothing less than a full DS" - so of course that helped me to Insist on getting the full DS.  I have lost 109 pounds - but I almost lost my life and have had "issues", if you will, since the day I got the DS.  I still have no end in sight - as to when I will be getting off of this TPN and able to eat and drink again - nor do I have an end in sight as to when I will get my fistula repaired - I think they (the surgical team here in tampa) is still trying to figure out how they are going to "Fix" this fistula - as it's not closing on its own.

I hope this helps.  I have "good" days and "bad" days.  Sometimes I totally regret getting the DS and all of it's complications.  Sometimes, usually after getting off the scale or when I can fit easily into a size 12, I am totally happy that I got the DS, complications and all.  I've been through a whole lot, and if I had to do it all over again, I don't think that I would have done the full DS - I would have opted to keep my pouch and just had the doctor change the routing of my intestine to get the malabsorbtive benefit.  He would have had to make my pouch a bit smaller - but I wouldn't have had him take down the pouch that resulted in the fistula.  Hindsight is always 20/20 right?  Oh well.  Now that I am here, I just pray every day that I get better.  I pray that I get these tubes and drains out and that the pain subsides.  I pray that the fistula will be repaired at some point this year (preferable without surgery) and that I will, as some point, be able to return to a normal life - where I can eat more than a table spoon or two at a time, and that I won't constantly have to worry about being admitted to the hospital.  I pray that I will get to the point that I am only going back to see doctors on a yearly basis (not weekly or monthly) and only for routine visits.  I hope I make it through this without  having to get on anti-depression medication as some days I feel so much dispair and find myself crying all of the time - I totally try to control it - but it is seriously hard.  Oh I guess I should mention that I weigh 140 - down from my starting surgery weight of 249.  I can wear the size 14 that I bought at the end of last year - and take them to my ankles without unzipping.  I have to wear them now, because I have to get the chest tube shoved in the side down to the bag that is strapped to my leg.  If I try to put on the size 12 jeans, I can totally fit (easily) but my equipment doesn't, or it's too binding and pulls on the tubes - which hurts because they are sutured to my skin.  I will be happy if they got me off of this TPN.  Not that I miss eating.  Actually, I have been trying to eat - but can't get more than 1-2 tablespoons down or else I throw it up.  But carrying the bag and pump around constantly are really a pain in the ass.  This is one good point, though.  Since it's complete nutrition including all vitamin supplements, my nails have been growing like crazy and have not broken and for the first time in my life, I actually have a full set of real nails and they look and feel great.  It's hard for me to believe that I haven't had a sip of anything to drink in almost 2 months (except for eating popsicles).  It's hard to believe that up until I got the green light from the doctor last week that I didn't eat one thing for almost 2 months.  OK I think that's it for now.  I will try to update a little more often.

Just one more sleep!  Leaving tomorrow for "the rest of my life".  I can't say that I'm either nervous or excited at this point.  I just have this mental checklist of sorts going on.  One list of all of the stuff that I don't want to forget to pack.  One list of all of the stuff that I have to get done before I leave work (and my real life) for almost 3 weeks.  One of the things that I still need to do before I go in preparation for the surgery itself )pick up my blood work results, etc.  Sooooo much to do!  And then there are those emotions that I've been trying to suppress, i.e. leaving my 5 year old for almost 3 weeks.  I have never been away from her for that long.  I'm trying not to think about it.  She thinks I am going on a business trip.  I'm praying that my husband doesn't lose his patience too often - because I know how trying it is to be a "single parent", as he travels on business a lot.  My husband has been very supportive, and we will have communication via Vonage phone, as well as internet - so I don't think that I'll have issues missing him.  I know that sounds bad, but the reality is that he travels a lot for his job, so I am used to long distance communication with him.  Actually, I think we talk more when he's out of town.  LOL.  I am actually going to meet Redheaded (a DS vet) as well as another lady that is pre-op - for coffee today.  It should be cool to be able to pick someone's brain about it.  Ugh, my house is a wreck - and I've had hope of cleaning it every night this week, but instead I have been getting home from work exhausted and just hop online to read the OH message boards.  They have been my lifeline.  I have been blessed to meet "Neil" from this board (or from Dr. Marchesini's Yahoo group, I can't remember), he's a former patient of Dr. M. who is travelling with me.  He's also been a Godsend as he answers all of my questions and he's been very gracious about doing it.  I call him to ask him things like "is my computer going to plug into the wall, or do I have to run out and get an adapter?"  (which it will be fine, by the way)  And "do I need to run out and get some protein mixes before we leave, and what kind to I get?" (and he said that he's already bought some for me.  It's like having my Angel at my beck and call.  LOL  OH, and I got my travel visa back - it was Fedex'd back to me on Monday.  That was such a relief!  OK I have to get my daughter ready for zoo camp this morning as they are taking the kids to a real swamp.  I'll try to update from Brazil.  Wish me luck!

Again, I am writing and so much has changed since my last post.  I am leaving for Brazil in about 5 days (Thursday, 4/15) and having the DS done by Dr. Marchesini.  I have been on this board every night as if it's been my Bible.  I have made a great deal of Dr. M. supporters.  As a matter of fact, I am going with a former patient of his who has graciously volunteered to escort me down there.  There is also another man from Indiana that I have been in contact with who will be there a couple of days after me.  I am feeling very confident with my choice of surgeons.  HOWEVER - I am on a roller coaster about the whole process itself.  Leaving my family for almost 2 weeks, am I really going to spend this much money out of pocket, will my business survive without me, etc.  It will all work out - but I'm a worrier.  Wish me luck - I'll post more when I've taken my spot on the losers bench!

OK - lots to report since my last post...OK - well, just a little progression.  I called Dr. Rabkin's office is San Francisco and I got a live person (Ernesto) who was incredibly helpful.  Within a few hours I received, filled out, and returned my medical questionairre.  I also sent him my surgical reports from my 1997 RNY, my insurance information (including the rejection letter they sent to Dr. Overcash last year).  It seems that I will still have to lay out $10K to Dr. Rabkin in order to get the surgery scheduled (even if my insurance sends pre-approval) - but I'm OK with that.  Hey, I guess if you're one of the best in the county then you can make up your own prices and rules, right?  LOL.  Ernesto emailed me back to day to let me know that they were going to get started with it.  I had my annual gyne exam yesterday and told my doc about the surgery.  She was the one who tried to convince me that it may be better to have the surgery in the US and try to let the insurance company pay for it.  Nonetheless, I asked if she could order a CBC and Lipid Panel for me so that I could submit it to the bariatric surgeon.  I figured that if she ordered it, my insurance would cover it.  She also is sending me for another mammogram (I guess it's par for the course when you're 40) - and she wants a thyroid test done.  The other good news is that my husband said that he would escort me to San Francisco for the surgery, if that is where I end up going.  He never offered that when I was considering having it done in Mexico.  So we will probably take the girl too - I'll have to check to see when she gets out of school for the year.  Now I just have to get my blood drawn and get the results up to them and get the medical records from last year's EGD up to them.  Then I play the waiting game, I guess.

It's been a long time since I've posted anything.  I got so frustrated with Dr. Overcash's office and their lack of follow-thru - that I actually gave up.  Life was getting too busy and stressful for me to be spending so much time & emotion dealing with them and stressing about the WLS in general.  WELL....that only lasts so long, because I am still fat and still want to "do something about it".  So here I go again.  I started looking into getting a Band over Bypass in Mexico - and found that it is about $7K out of pocket.  So I have been working hard and saving (or at least not spending as much) - and as I got back on OH - I did more research and read a ton more posts in all of the boards - and have decided that a Revision from an old RNY to a DS is the way that I am going.  I have been asking questions, finding out which doctors are able to do this and how much it will be.  It's about double the price - and now I have to save more money.  I've got some "big deals" in the pipeline at work, so I may have the rest of the money by the end of April.  I think that I have decided that I am going with Dr. Ungson in Mexico - but have been unsuccessful in getting in touch with his office.  I called Dr. Husted's office in KY and was told to call back in 2 weeks because he wasn't currently taking any new patients (I think they were moving offices).  So here again I start my journey.  Nothing but speed bumps so far.....

Well - I called the doctor's office yesterday and just as I suspected - they had to take me off the surgury schedule as they have not received insurance approval yet.  the office manager told me that they submitted it to pre-authorization instead of pre-determination or something like that and it will probably be another 3 weeks or so before they hear back from Cigna.  I am getting pretty discouraged at this point. 

I don't know how I still have my sanity about this process.  I called the doctor's office today.  I told her that I was just inquiring if they had heard anything from the insurance company yet.  And I got a, "Oh, Linda I was just working on your file yesterday and I haven't had a chance to send your letter into the insurance company yet".  "I should be able to fax it off tomorrow."  I WAS READY TO BLOW MY TOP!  But as calmly as I could, I said, "I'm a bit concerned because it has been 6 weeks since I've been in the office and that letter hasn't even been submitted to the insurance company yet"  Then she got a bit defensive with me and started giving me some lame excuses about not being able to work on it blah, blah, bla-fu#$ing blah!.....which really blows my mind.  But tried to remain calm because I didn't want the letter to suddenly become "lost" on her desk for another couple of weeks.  So I decided there was no reason to continue the conversation and told her that I would call back at the end of next week to check again (because she said that if she faxes it tomorrow - she SHOULD here something from the insurance company by the end of next week.)
THEN
About 5 minutes later my assistant said that I had a message from Cathy Bachman - so I called her back and she said "Which Tuesday would you like your surgery".  I said, "what are you talking about?" and she said that she is pretty sure that I would be approved, so she wanted to get me on the surgery schedule.  So, I said, "Aren't we putting the cart before the horse, considering you haven't even applied to the insurance company yet."  ANYWAY - they now have me on the schedule for June 30th - which I am not blocking off on my work schedule yet, until I hear back from the insurance company.  I wish I could say that I'm excited, but I'm simply more frustrated!  THEN I've been getting all sorts of emails from people who have had failed revisions.....yikes....that doesn't make me feel so confident.

Ughhh!  So last Friday, I called Dr. Overcash's office to see if they'd heard anything from the insurance company - and was told that they haven't even sent the letter off to the insurance sompany yet......AND as luck would have it, as she was looking through my file, she realized that the letter that they had prepared was "incorrect" and would need to be revised.  And to top it all off - it would be about 2 weeks before they could get a new letter done because it takes a couple of weeks to get to the transcriber and back.  WTF?????  I just can't believe in this day and age they anyone would keep such inadequate help.  I mean, if this office manager could look at the letter and see that there was something wrong - why the F#$% could she not get her A$$ on the computer and retype the friggin' thing.  It probably would have taken 10 minutes and not 2 weeks.  AND why the F#$K would the doctor not follow-up within his own office as to the progress of these matters - is he so booked that he doesn't need more work?  I mean, I am assuming that he only makes a living if he actually dies surgeries.  I AM SOOOO FRUSTRATED!

I'm still waiting.  I wrote the letter to Dr. Overcash - so they could include it in with the request for the insurance company.  I am assuming that they have sent the letter to Cigna already.  I guess it's just a waiting game at this point.  I am on this site everyday - but as still not trying to get obsessed with this surgery....just so that I won't be devastated if I get a rejection letter in the mail.  I have been trying to get 100-120 grams of protein in a day....it's pretty hard....even with a large stomach.  I have been putting a scoop of vanilla protein powder in my coffee in the morning for 32 grams.  Sometime I have 2 - but still, the rest of the day, just trying to get in all of the protein and the water.  I guess I am just practicing.  LOL.  I have been to the health food store a lot more - and trying a lot of eggfaces recipes...just for practice.  Unfortunately, I am sure that I haven't lost a pound.  Ugh!

OK - had my EGD yesterday.  I met the doc for the first time.  Very nice man!  But he reminded me of Monk - but, extremely nice.  He confirmed that I had a stretched pouch - and from the drawing that he did, it's about 3/4 of what a "normal" stomach would be.  So I am not getting much restriction there.  They also said that I had a hietal hernia - maybe that explains the indigestion I get when I am sleeping (I forgot to tell him about that) and also the extreme tighness in my chest I get after I eat.  Hmmm.  I told him that I was hoping that there was a "mechanical" failure from my original RNY - he said that he would speak to Dr. Overcash and we made an appointment for next Thursday (again, another 2 hour each way car trip)....Oh well...the things we are willing to do.  Just a note for those needing to get an EGD - nothing to it!  Really - I thought for sure that I would feel like crap for the rest of the day and have a super scratchy throat (since they are sticking a scope down there) but nothing.  I could have driven home by myself (if they would have let me - but they require that you have a driver - I'm guessing that it's because the median age of their patients is about 157 LOL!  So, we wait.  I think that I am going to write the "letter" that Dr. Overcash's office asked me to do, this weekend.  That should help explain a lot to the insurance company.