Ellen H.

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It's been a long time and so much has happened since my last post on March 5th!

I was inpatient at Brigham-Women's for 28 DAYS after being admitted on March 17th.

They were unable to remove the band  by endoscopy. It turns out my band was seriously eroded, much more so than anyone had thought. In fact both my surgeon and the head of bariatric surgery, Dr David Lautz, at BW, told me they had never seen worse.

Pretty scary.

So on  the 18th Dr Lautz took it by laproscopy after a tense night of watching to make sure the efforts of the endoscopist were not naturally progressed to a detachment, which would mean immediate-emergency surgery.

All went well thereafter and I was discharged home with a JG drain. On the way down Brookline Ave in Boston we hit a pothole and I knew something inside of me 'popped'. But in discomfort and honestly thinking that couldn't possibly have happened, I went blissfully home to bed. I had lovely sips of water and then some green Jello. Within an hour the discharge from the drain was green. I called and was told to come back.

9 HOURS in a very busy, yet organized and efficient ED of the Brigham and I was once again admitted to the 1 floor, which is primarily bariatric. Midnight came. Morphine reattached. Now we were to watch and wait and run more tests on me than I think I have had in a cumulative 40 years of life.  Horrific roommates. Insulin and blood sugar problems. Unable to eat they put in a PIC/Central line in my left arm....three days later and a bright red mark, I am told I now have a blood clot.

The most terrifying words....a BLOOD CLOT. But they tell me as it is in my shoulder that it is not like THOSE blood clots of Red Alerts and near death experiences.

I saw SO many specialists...so many medical students. I even gave a 30 minute 'class' from bed to a gathering of medical students looking at endocrinology who wanted to learn about insulin pumps. Mom was with me as I gave this impromptu, off the cuff course in how the technology of this century can save a diabetics life...it was COOL....

Anyway. They put another PIC line in the right arm and worked on getting my blood sugar under control. The PIC line was fed a 'total nutritional package' which included insulin, but of course MY metabolism was different, so it was a mess. During this time I had CAT scans, x-rays, barium swallows...all failing to show where the leak was that was causing so much fluid to exit my body via the drain.

I told them over and over about the green Jello. They told me it was 'nearly impossible' for the discharge I saw (which by the way I DID bring with me to the ER) to be the same Jello I ate that night. They said it was a tear in the incision holding my stomach together...and that the flesh of my stomach was paper thin due to the erosion...lots of specialists telling me the same thing.

Finally after 25 days they decided to just go in and look. Another endoscopy. It showed that the drain line had 'somehow' pierced my stomach wall and was in effect, a straw...EMPTYING THE CONTENTS INTO THE DRAIN.

Hmmm. I wonder where I had heard that before?

So I was set up for yet another endoscopy, this time to repair the 'problem'--never again defined as a 'leak'. In 28 days I was put under anesthesia 4 times, for a total of some 9 hours.

3 days later and I was finally sent home. No PIC line. Able to swallow liquids. Happy.

But then it took 4 months before I felt myself again. It was explained that the amount of anesthesia I experienced was enough to keep me down for 'a LONG time". But I wanted my bypass, dammit!

Dr Sandor. Beloved Dr Sandor. He listened as I cried. Held my hand. Patted my shoulder. Agreed we could do it, if the stomach had healed. So off I went to LMH for yet another endoscopy...

And it healed.

So then it was just a matter of dotting our i's and crossing our t's.

September 28th I underwent  laproscopic RNY at Lawrence Memorial Hospital. 7am. I don't remember much in fact I can't remember anything after they wheeled me from pre-surgery and were telling me 'ok, we're going to give you something to make you relax'.

I woke up in recovery and felt GREAT. I mean really great. My experience with anesthesia has always been bad. I wake up afraid. In pain. Crying. Not this time. I was on a morphine pump but it was more than that. It was DONE. Finally.

The moved me to the ICU after a couple hours. Dr Sandor always has his patients put into ICU for at least the first night. It means a semi-private, if not private, room and close nursing care. Fabulous. Nurses. Room.

I had my MP3 which I used more as a relaxing effect than anything. Plus it works well to block out the normal hospital noise. Dr Sandor came by and was shocked to see me sitting up and happy.

I felt like going home! But it turns out I had a blood pressure spike during surgery (which I had forgotten I had at BW too), and they were a bit nervous.

By Friday I was really antsy. The pain was managed. I had passed the 'gas' test within 24 hours and was up and walking 7 hours after the surgery. I was really wanting a shower (my sole complaint is that LMH doesn't have showers and the only bathroom in the ICU isn't really set up to take a proper sponge bath). I got to see my wonderful cardiologist and Dr Sandor quite often and both were very happy with my progress, so home I went.

Now it's been 10 days post and I feel ok. I am tired. And the blood pressure meds are making me nauseated. But I am getting my 6-7 protein drinks down. I love Nectar products, which are fruit, so NOT chocolate or terribly sweet--which I find gets old very fast. I am having broth, crackers and tons of water. I am looking forward to Tuesday when I start stage 4 mushy food and will be able to get out and drive!

My 5 incisions are healing ok. I do have a bit of a fungal infection (plastic bed = hot & sweaty and no shower means instant rash!)..but even that isn'tbad.

I saw Dr Sandor yesterday and he admitted to being very concerned about this surgery and the amount of scar tissue he'd encounter. But he took it slow and was methodical. He removed what scar tissue he could and did the job. 3 hours! But I swear the difference between his surgical skill and that of the "Boston premier' doctors???? HUGE. He's an artist.

An Artist!!

I'm still up 10 from hospital weight, but it's coming off. Tuesday means a return to the gym...except now my body and metabolism won't be figthing against me...

It's DONE.

Wow.

(and my brother had lap-band surgery on the 5th of October!! We're on a journey. Life is good.)

Ellen

I am 2 weeks from having the band out....I've tempered my frustrations over the 6 week delay to having it done and am now looking forward to it...another step!

I attended Dr Sandor's support group and WOW. I forget how much I get out of support group until I am leaving...after some initial shyness, the group starting sharing a lot about post-surgical GI issues, like burping and farting! Dr Sandor, being his irreverent self, immediatley set to Googling and found an insert for one's underwear that has a charcol filter to help with the noxious odors!! How many groups of 30+ adults can sit around and talk about excess gas without TOO many laughs??? WLS surgical patients!!!!

My WLS journey pal Beth had her band-to-bypass last week and returned to work in less than a week...amazing. She is a constant source of strength and support for me. She's just the best. Thanks Beth!

Love to all!
Ellen

I saw Dr Sandor last week and he is not going to remove the band before/during the RNY. Instead it will come out 1st At least the band portion. He'll remove the tubing & fill port when he does the bypass . I have an appointment at Brigham-Women's GI unit, Dr Thompson, on February 1st. My surgeon hopes we can get it removed via endoscope, to avoid a surgical procedure. Sounds scary to me...go down and get it out ?? Yikes. But he thinks its the best way to go.

Then a few weeks rest, with NO restriction for the first time in so long....including the 2 week pre-surgical period? That scares me too...But I am working on having outlets for my hunger issues w/out restriction, including a return to therapy & a strident diet plan. I know I have to make this work from my brain outwards. I met again with the therapist from pre-lapband. A lovely Irish woman. Last time we spoke I felt SO connected to her, so have decided that she's the one I need in my life right now to help with this, and more. I am also using the Brigham-Women's pre and post surgical diets, found on their website. The benefit of having Dr Sandor are too many to count, but you do lose the BIG hospital stuff, like interactive websites and down-loadable diet plans....since these are wide open to non-BW patients, it's a non-issue. I raise this to show those of you, if anyone happens to be reading this, that going with a solo surgeon, instead of the big programs, is NOT a liability. In fact I'd have been totally lost without Dr Sandor and Kathy Chaplin (his virtual right hand).

I am excited about finally having the right tool for the job with the RNY....especially after hearing yet another 'suggestion' to try Weight Watchers instead of surgery.

People just don't get it.

In very exciting news, I got my hair cut. Substantially! No more curly locks.  The last time I did this was after I had lost a large (120lbs) of weight. No, no diet ever did that...I was diabetic, undiagnosed, and my body had turned against itself and was eating away my stores of fat...which would in fact be cool, except it also eats away at healthy muscle and organs...and destroys nerve functions...not good. I got the diabetes under control with insulin (pump) and gained it all back....obviously. But then, as now, I am shown of my locks and ready to rock n' roll. Its a mental thing! Instead of making the big hair change After I lose, I'm doing it before...to assure VICTORY! (fingers crossed in anxiousness!)

Ellen

3 years ago I wrote my last blog. I am not very good at this, but am taking cue from my pal  Beth, who is also here again. She's a VERY good blogger!

The lap-band didn't work. Or I didn't make it work. It took a LOT for me to admit this to my surgeon, myself and finally, to others.

I went back to a support meeting and there was Beth, and others, all LB 'failures'. In that moment, talking to her and the others, I felt suddenly relieved of so much guilt that I've been carrying...so much failure. I wasn't alone. I'm not alone now. Beth is having her surgery in late February. It's comforting to know there is someone, Beth, but also YOU dear reader, who I can reach out to and just unload and vent. You know!!!

Our beloved Dr Sandor has been amazing, as usual. Telling us that there are reasons. I am on insulin and battle that daily. More insulin means standing still weight wise, or gaining. I'm now at 272. Still less than when I started this journey, but more than my lowest with the Band. I did have a lot off complication problems back at the start though and I fell into a terrible cycle of eating what was easy, got past the band (I had 5 trips to the ER after it almost occluded completely...5 times in 10 months). Yummy ice cream, creamy cheesy soups, chocolate...foods I wouldn't eat in excess before, I now ate at every meal. Before the band I was a carbo lover...loaf of bread, pound of pasta...haven't eaten that since the band, so it DID work...but in it's place are now all the foods that having the GB will help me control.

A lot changed in my life. My boyfriend and I broke up. He was going through treatment for non-Hodgkins Lymphoma and it took a toll on our relationship. So with a heavy heart I was single. And afraid. A fear that only comes from having someone you love, who is young, be very very sick. He had no choice. I did. I do. My death will come earlier than necessary because of this fat. I can be healthy. But now that I am in my 40's, it's time to do it right and do it quickly. In time to make a difference in my health.

So I began the process of going for the RNY revision. Just as I made that decision, my mother, just 67 years old, was diagnosed with squamous cell cancer in her mouth. We are now 5 months post-diagnosis and she's still going through a lot. At present she's fighting an abscess in her neck. We head into Boston tomorrow to see her surgeon and I am sure she'll be admitted for IV antibiotic treatment.

This put my journey on hold, gladly so. Mom is now 'cured' and we can resume this journey to get me healthy too.

I am through almost all of my clearances. I stuck a couple appointments in when I could and just last week had an endoscope, which I fought against. But since it would be the last time to view my stomach easily, Dr Sandor gently persuaded me to do it.

Now this is where my all too familiar bad luck/good luck  comes in.

The endoscope showed that my band is eroded into my stomach wall and where it hasn't broken through, there are blisters inside. 

 I haven't had side effects but looking back I have been getting stomach aches after eating and I chocked that up to being full. My band was completely loosened in May 09 when I had yet another instance of my stomach swelling around the band. The year prior I had such trouble I ended up in the ER, unable to swallow anything, which scared the crap out of me!!! Once again then Dr Sandor came in to save me...my white knight.

But the GOOD news is that my health carrier will now approve my surgery without having to attend their 6-month "I can Change' program. They, Tufts HMO, JUST changed their policy on conversions on December 23, 2009!! Yes, just 2 weeks ago they changed their rules. If I did not have the erosion, not matter where I was with the pre-approval tests, I would have to enter into the program and wait another 6 months...

I Can Change. This is the name of the program. Remember Nancy Regan and "Just say No?". How many drug addict who heard that and just said no? The name is insulting. I've been battling food and weight issues for 30+ years of my life, like we all have. This isn't something we are just running blind into doing. This is major surgery!!! This is major life changes! Maybe that was the intent of the name, but I don't hear that. I hear my family/friends comments over the years, "can't you just go to Weight Watchers"??? In fact in a strange moment, the dietitian I was sent to see at Melrose-Wakefield to LEARN the GB diet, asked me just that! Bitch!

So here I am again. In fact I see Dr Sandor tomorrow morning to find out just how soon the surgery may be. My final pre-surgical is psych and that's on Thursday.

Before the endoscope, I had thought my surgery would be in March. But I think it will be sooner now that I have this complication....

Will let you know!

Ellen

Well, I certainly expected to be further along this journey than I am, but if the numbers aren't there, the mind-set it.

What they don't tell you...the grief you have. The loss of your very best friend...food. No longer is it there to give comfort, albeit a psychologically ill friend!

I am at 242. My BMI is 39.1. I went from a 22-24 to now a solid 18.

BUT, I have learned that food is not any answer to any question other than something my body needs so I ca do what I want now. Which is hit the gym (not enough, but am going), sleep better, feel better, be a more physically sexual partner (sex IS better because I feel sexier!) (Michael benefits greatly there! But loves me in any form, which is better too!)...

Well, it's just ALL better.

Do  I still miss my friend food? Sure! But I can handle it better now. I still throw up on occassion, by making the same mistake of eating too much, or not chewing well or slowly enough. I can eat steak, but chicken & turkey only in the past week...I go out to eat, but tend to order an appetizer and almost always end up with a 'doggie' bag, which o course the dogs LOVE! 

Keep on your path. Even when it feels as though it's not working or it's just too hard, it will eventually work. I wonder if it's not easier this way or us Banders...we have longer in loosing weight and as such, have the time to come to terms with the loss of food as central to our lives.

I think now in terms of being at goal in a year, not in months, as I had right after surgery. The sensitivity of my stomach, shown by the complications I had right after surgery, of my stomach swelling after the proceedure, follows now to my adjustments. It took 6 weeks for the last adjustment to relax suffficiently for me to 'get there' and be able to really eat---more than wonderfully tasting (and fattening) cream of broccoli & cheese soup or ice cream!)

To my girl Beth. Thank you. Meeting you finally and being able to reach out when I need you is still so damn important to me. 

Love to all. Keep your chins up...they'll be singular soon enough!

Ellen

Well, I'm 12 days post LB surgery and my BMI is down to 42.1, my weight is 259...23 pounds!

It wasn't easy. I had fluctuating blood pressure, which put me into the Cardiac ICU unit, where unfortunately, I was treated very poorly by the nursing staff--save for one THANK YOU KORI!!!

I went home knowing I shouldn't be. I wasn't swallowing well, was in terrible pain, had massive diarhhea and gas.

24 hours later I was back, admitted via phone by my surgeons office through the ER. I was so dehydrated they took 4 attempts to get an IV line through...wow, talk about pain!! I hadn't kept anything down in that 24 hours including the liquid pain meds, so the pain in my belly was unbelievable. On top of that, I had constant saliva coming up that would get stuck in my esophogus, blocking my breathing, which would only clear if I burped--not something I am normally able to do well! Mom was put back into action as my #1 burper. No one could do it, except for her. I told her that was mightily impressive! I am 40 years old and well past the last time she had to burp me.

But then another 4 nights, this time on the regular cardiac floor and some amazingly wonderful & kind care by the nurses, I was finally sent home, able to swallow, with manageable pain and no saliva!!!

Now I'm still pretty weak but at least am able to get around well on my own without any real fear of a problem arising.

I couldn't believe the scale when it read 259....just fantastic! I'm still bloated so I can't really feel it, but I'm hoping the swelling will subside soon so I can enjoy this first milestone. I didn't think I'd ever see my weight at 250 anything....wow!

Thanks to all my OH friends for their amazing suppport...especially Beth & Virginia. I'm so blessed to have you in my life.

Ellen

Well, I certainly expected to be further along this journey than I am, but if the numbers aren't there, the mind-set it.

What they don't tell you...the grief you have. The loss of your very best friend...food. No longer is it there to give comfort, albeit a psychologically ill friend!

I am at 242. My BMI is 39.1. I went from a 22-24 to now a solid 18.

BUT, I have learned that food is not any answer to any question other than something my body needs so I ca do what I want now. Which is hit the gym (not enough, but am going), sleep better, feel better, be a more physically sexual partner (sex IS better because I feel sexier!) (Michael benefits greatly there! But loves me in any form, which is better too!)...

Well, it's just ALL better.

Do  I still miss my friend food? Sure! But I can handle it better now. I still throw up on occassion, by making the same mistake of eating too much, or not chewing well or slowly enough. I can eat steak, but chicken & turkey only in the past week...I go out to eat, but tend to order an appetizer and almost always end up with a 'doggie' bag, which o course the dogs LOVE! 

Keep on your path. Even when it feels as though it's not working or it's just too hard, it will eventually work. I wonder if it's not easier this way or us Banders...we have longer in loosing weight and as such, have the time to come to terms with the loss of food as central to our lives.

I think now in terms of being at goal in a year, not in months, as I had right after surgery. The sensitivity of my stomach, shown by the complications I had right after surgery, of my stomach swelling after the proceedure, follows now to my adjustments. It took 6 weeks for the last adjustment to relax suffficiently for me to 'get there' and be able to really eat---more than wonderfully tasting (and fattening) cream of broccoli & cheese soup or ice cream!)

To my girl Beth. Thank you. Meeting you finally and being able to reach out when I need you is still so damn important to me. 

Love to all. Keep your chins up...they'll be singular soon enough!

Ellen