Buyer's Remorse- My Horrible Road To "recovery" Post Sleevectomy

[jsd2 39]

I'm so grateful to have found this site and have read a number of stories that made me feel less alone in my own struggle. Here is my story:

March of 2008 I saw a weight loss surgeon who said all the right things to convince me I was too fat to lose weight on my own and the only way to have lifelong success was to sign up for WLS which required a thousand dollar deposit. I weighed 265 lbs at the time and in my late 30s was far too tired to try another diet and exercise program that would inevitably result in another 10lb weight gain. January of 2008 my employer switched to a new insurance carrier, I submitted paperwork in March for coverage for WLS and eventually got the definitive "no" in November 2008. Fast forward to October 2009, same doctor, same spiel, weight now 295lbs and co-morbidities presented to insurance carrier requesting coverage- denied. Februaury 2011, made a "lets just see" call to insurance carrier to find out if requirements were met........found out that one more year of a documented weight and BMI over 40 and the coverage would be extended! I put my ducks in a row and within 2 weeks of my initial doctors visit in February 2012 I was able to schedule my surgery for mid March.

I was shocked to find my weight ballooned to 347lbs but thrilled when I lost 16 lbs pre-surgery in a short 12 days. I took 5 days off work, gave away all the food in my pantry and bought the cutest pajamas I could find for my 3 day hospital stay. I packed my bag on Sunday and even though I was nervous and exited I slept until 5am when I took a luxurious bubble bath and set out for the hospital @ 7am. In pre-op my precious daughter sat and prayed with me, my anesthesiologist joked about just turning the big 40 too, my surgeon came in and smiled, answered my questions, quelled my fears and prayed with my daughter and I.

Nothing but blackness.

I barely woke to find myself in PACU alone and asked for my daughter to be allowed in.."sure honey, which one is she?"..."hmm, oh, she's the one with pink hair!". My sweet daughter came in and praised God with me that I was breathing and everything seemed fine. Fade to black again. I'm in a private room now and my daughter is sleeping on the sofa. The nurse comes in, the IV is checked, "here's your button for the morphine pump. Any time you feel pain coming on you press it." I'm not in pain, I feel my stomach and it feels flat already, stupid, it must be the drugs. My surgeon comes in with his PA and he looks flushed, sweaty and triumphant, "eveything went wonderful! no problems, a textbook case if there ever was one." we smile and I joke about calling What Not To Wear to get a new wardrobe.

I get up to the bathjroom as soon as I can. I'm anxious to see how I look and change out of the hospital gown. It's been 3hrs since surgery and i'm in my pajamas, robe and snuggly slippers and my daughter takes my arm and we begin our walk around the unit. I walk and walk, smiling and thinking what a good patient I am, no DVTs for me. My stay is uneventful, day 3 my surgeon smiles and says "time to go home!" I fill my prescriptions but I haven't touched the pain medicine and feel so powerful that I drive myself home.

Then the horror begins. The first noght i'm home I wind up in the bathroom with forceful diarhea that comes in waves of gut wrenching spasms. Over and over again, just foul smelling liquid, I sit there too long and now i'm sick, I pull the trash can over and vomit clear liquid until I think i'm going to pass out. My daughter gets me to bed, time to take the meds and not try to do it on my own, I slump back and its daytime now. My head is spinning and the spasms come again, diarhea, vomit.... I step on the scale, smile in a drug haze and think wow i've lost 2 more lbs! Nothing is clear anymore, what day is it? what time is it? did I take my pills? was it a dream or did I really eat a piece of chicken from the refrigerator? why won't the nausea stop? why do the Protein Shakes suddenly taste like dog butt? I can't get anything in, i'm trying to force 2oz popsicles down but when I finish one its back to the bathroom with waves of diarhea and vomiting. Day 6 post-op, I manage to take a shower with my daughter holding me up, pack 2 Protein shakes and my giant water bottle and trot off to work. I make it 2hrs into a ten hour shift and spend most of it in the bathroom vomiting blood...time to call the doctor.

I talk to the nurse who tellls me to drink as much Water as I can. I can't. I call and talk to another nurse who says to try a different Protein shake. I'm weak and sick and starting to lose it...I scream at my daughter "why won't you help me?". I call the nurse again, the PA calls me back "have you been able to take your meds and get some water in?" no, NO! It's been 11 days since surgery and now we're worried for some reason and my daughter has my bag packed and we're back at the hospital where they have my room ready and they put me back in a hospital gown. I don't see my doctor until Monday but Fri, Sat and Sun a variety of PAs mand other surgeons from the office come in and tell me things and they'll support me and some people have a harder time and just give it time, time time.

Monday the first of many PICC lines come and the tests start. In 3 days I blew 11 IV lines. The PICC line sounds wonderful but they hit my ulnar nerve and the vein occluded and I went back to my room with an open hole in my arm, a second PICC and a gown covered in blood..how did that happen with a sterile drape? So I can't eat but they think I won't and they tell me all the reasons I need to and they threaten if I don't its time for TPN. I try, I puke. I try everything, Unjury- ick, water-gross, eggs-vomit, pudding, ice cream, sherbet, yogurt, Jello... the nausea wells up from my toes and never ends. The TPN starts on Tuesday, I leave the hospital 13 days later, Maundy Thursday, I beg because tomorrow its Good Friday and I can't bear to be away from daughter on Easter.

Monday after Easter I have lost 8 lbs in the 4 days i've been home, somethings wrong. The doctor says to get a liter of Fluid and some Vitamins, it'll be ok, it's not. Friday the nurses come and set up the home TPN and show me how to do IV push meds, the saline, phenergen, saline, heparin, again, the zofran, again, 8 times a day. My house becomes and infirmary, boxes and boxes of supplies, dressings, medicine, saline, alcohol swabs, heparin. The dog can't be out when the dressing is changed, the TPN bag is changed once a day, add the vitamins, push the medicine.

It takes a few weeks and the meds are doubled, the nausea just won't fricking stop. The TPN is my savior. another month, double the meds again, brief periods of relief, my weight stabilizes @ 317....I had WLS for this? I can't work, i'm constantly sick and besides I have a doctors appointment every week and another test, EGD, swallowing, emptying studies, another EGD, but nothing is wrong "everything is fine, it may just take time for you. You might be on liquids for 6 months" my doctor says... liquids? it's been 3 months and I can drink about 12 oz a day... liquids? i'm still on TPN?!

It's been 4 months, I can't stand the TPN, we decrease the time and I try to eat what I can when I can. My weight is 318, d?@$ WLS! We double the meds, the phenergen is 4 times the dose it was when I had surgery, does anyone know this causes heart problems? We decrease the TPN, I can only eat right after I push the meds and I do it again right afterwards, then I pass out... weight loss is tough work, I manage to get down to 314.

Somethings wrong, I feel sick, sicker than usual haha...my daughter is talking to the nurse at the ER, "no she feels really sick, her heart is skipping beats maybe? her blood pressure is up. look at her arm, do you think it's swollen? what's that black mark?" They tell me I have a UTI and send me home, its Monday. I can't breathe, i'm having a heart attack, I know it, its Wednesday and we're back at the ER, the doctor smiles and says its anxiety, take some Ativan and keep taking your antibiotic...are you kidding? I throw up the antibiotic, it stinks, I crush the Ativan and sleep for days. Its Friday and the nurse calls, "how are you" my arm hurts and its swollen, "GO BACK TO THE ER" I can't, I fall back asleep. Its Saturday and I can't find my wrist, my arm is a thick puffy balloon like they use to make balloon animals. My fingers won't bend, doesn't matter cause I can't feel them anyway, i'm sick, I vomit and try to push my meds, I get in 2ccs of saline and it feels like my arm is a water balloon...I push a cc and I think I see it literally filling up, theres a black gnarled line around my upper arm, looks like a barbed wire tattoo, thank God for WLS.

I'm at the ER again, its Saturday night and i'm sure they'll admit me, they HAVE to pull the PICC and give me a new one, surely they'll see that, I can't breathe, please give me some Ativan and phenergan, i'm gonna puke again. A nurse comes in and says he's from Interventional radiology, doesn't even touch my arm but smiles and leaves, we hear him outside the door "you've gotta pull that PICC, it's really bad!" a tech comes in with an ultrasound machine and pushes on the outer part of my arm, over and over, slimy gel, pushing harder, my arm isn't quite so numb now, its killing me on the underside, my armpit aches and the inner portion of my upper arm feels like someone is firing a gun into it every time they touch me. "Good news!" the ER doc smiles and tells me its just a little superficlal blood clot...yay! all we need to do is apply warm compresses and it will go away, have some noroc for the pain...great, more crap I can't swallow. "What should I do if it gets worse? what if it swells up more?" don't worry "It's fine, no need to come back even if it gets bigger, warm compresses and you'll feel alot better"

It's Monday and the weekend went by in a drug induced haze. I can't use my PICC, I crush the norco and ativan and try to stay asleep, no not asleep, blacked out, like anesthesia until the doctors office opens Monday. I tell the nurse, she sets up an appointment at Interventional Radiology for them to pull and replace the PICC on Tuesday, good, hopefully i'll die by then. Its 6pm Monday and I can't take it, I might be hallucinating, I know i'm dying, I moan and rock, i'm in the car, off to the ER again. I wait for hours while people scream and cry, everybody is taken before me, I pull my sweatshirt and cover my head, I moan and lick the blood from cracked lips, I can't even stand up to go to the bathroom and vomit, 4 hours later and they wheel me back. Nurse after nurse comes in to try to start an IV, "she's dehydrated and a tough poke" "I KNOW! she's so ill tho, what are we supposed to do???" check her feet, no veins, we're gonna have to go in thru the femoral.....God no, I can't remember if I have underwear on and they're gonna cut into my groan to find a vein.

"Great news!" we found a cluster of blood clots under your arm, no not one, there are several vericose veins bulging out of your arm, the PICC went bad and they strangulated and now they have clots in them. You're gonna die if you throw one to your heart or lungs, we're starting the lovanox, you're gonna be fine. 3 days of terror, I'm admitted to the hospital and the doc upstairs decides she knows what I need, they pull the PICC from my grossly swollen arm and I beg for some dilauded "this isn't a painful procedure, you don't need anything for pain." and she teaches the student nurse how to yak=nk 4 feet of tubing and wire from my arm while I sob, my daughter cries and starts to yell. The doctor leaves, she won't come back or write orders, i'm sick, no pain meds or nausea meds, try some tylenol, f**** you. I cry and demand to see another doctor, I call my doctor and the oncall doctor screams at the charge nurse...they give me ativan and phenergan, my daughter yells and threatens, the nurses hate to come in my room.

Wednesday morning is the first and last time I see my surgeon, he pops his head in and smiles "so your PICC is gone now, thats what happens" when you screw up and get a blood clot is what he doesn't say. I'll see you in my office next week and we'll talk about a feeding tube. What? I had WLS 4 and a half months ago... I cry and turn and face the window, I keep the shades down.

I'm sick of this, I finally get to leave @ noon on Wednesday. I have a script for Warfarin and an order to have my blood drawn every day, I have no PICC line, no IV push meds, no TPN and my arm looks like I was going for a Popeye look. I sob on the ride home. When I go to the lab the next morning they stick me 6 times and still don't get enough to run the PT/INR to check my clotting times. I fall out of the car as I try to go inside, I just sit on the grass and contemplate throwing up on the lawn, I see the neighbor and when she waves I think I should strip off my clothes and just run shrieking down the street... I need a laugh, otherwise I just cry. I'm so depressed, I see my primary doc, he orders me oral nausea meds, a compression sleeve for my arm and listens to me cry. I tell him my heart is skipping a beat, he says "phenergan can cause permanent heart damage" f*** phenergan.

It's 12 days since I left the hospital without a PICC. The last thing my surgeon said was that they couldn't find a reason for my symptoms, he even asked the doctors at a seminar in California and they were all puzzled, oh well, too bad for me. My weight is down to 300 lbs now, it was 312 when I left the hospital. I made the mistake of going back to the ER last week Tuesday because my chest hurt and I was coughing and that same shortness of breath and heart thing came back. they said I was fine and were sending me home when I looked the ER doc right in the eye and said "with all due respect, the last time you said I was fine I had a blood clot that almosgt killed me, please, can you just check everything to make sure i'm ok?" tears in my eyes, he smiles, lets run another test. Theres a shadow in my lung, likely pneumonia but we can't be sure the clots haven't moved. We'll keep you for observation but we won't admit you, you're probably fine buit we'll do some IV fluids and antibiotics to be sure. They take me upstairs, I know whats coming next, nurse after nurse tries to start the IV, IM pain meds, I ask for nausea meds at 6:30 am and by 2pm I still haven't gotten any. I can't stand it so I leave, they chase me and try to make me sign something saying if I die its my own fault. I get home and chew a phenergan, drink some lortab and pass out.

My primary doc said he would figure out how to get me seen by a specialist, I won't return the calls from my surgeons office, if I could put a stop payment on his check I would but insurance has already paid his fee. Maybe he's right, there's nothing to explain my symptoms, I doubt that, my skin is grey and I look like a chemo patient because my long thick brown hair has fallen out in Patches and I have a kind of crazy eyed look to me. I'm hungry and thirsty, I think I look like I could be a victim of starvation but then I laugh because i'm still so fat.

I knew the risks of the surgery, pulmonary embolism, DVT, sleeve leak, infection. I was a nurse for 10 years and took care of hospice patients who looked better than me. I signed on for a magic pill, a fantastic surgery that would finally help me get to a healthy weight so I could see my daughter graduate from medical school, get married and hold my grandchildren. I wanted to avoid diabetes and stop heart disease, funny how it all worked out.

If you have experienced any of the pain, nausea, depression, sadness, fear, frustration, anger or disgust like I have, tell me your story and let me know i'm not alone, i'm not crazy and it does get better. :-)

[mrscastillo 32]

I hope you get better :/

[Finding MeMe 204]

WOW it looks like you have every thing we were told could happen. I hope you get better soon and wish you a speedy recovery. This is a serious sometimes life altering surgery.

[enigmachik 403]

I'm so sorry to hear you've had such a hard time of this. It sounds down right miserable. I pray they figure out what the problem is soon and that you'll get to take the fast train back to health. hugs.

[LizInTexas 125]

OMG I can't believe all that you have been through ! You've certainly been more patient that I would have been because the second time that the surgeon "stonewalled" me, or the ER blew me off again, they would both have received a letter (or even a visit) from a malpractice lawyer naming anyone who had touched me as "potential" defendants if they didn't get off their collective azzes and DO SOMETHING !!! You hang in there as best you can, and I will certainly be keeping you in my thoughts and prayers... I'm scheduled for September 18th and I'm self pay because I have no insurance... Definately going to have to do alot more soul searching before I write the check...

[lulugirl 20]

I'm so sorry to hear about your health issues. I hope things get better for you soon. I am having issues but not as yours. You Are not alone in this !

[Slenderella 153]

My heart breaks reading your story!! I just don't understand how this can happen in this day and age. I wish there was something more that I could say to offer you advice or hope, but all I can offer are prayers. Praying you get the help you need very soon and that you and your daughter are able to weather this storm.

Sending you hugs...

[Izuri 428]

I am so sorry that you are going through this nightmare. My heart really goes out to you and I will keep you in my thoughts and prayers. I hope that they find out soon what is going on so that they can actually make some headway on curing it. ((((hugs))))

[AdeptDreamer 104]

I'm soo sorry you are going through this! I really hope something good does come out of this. I don't know if this really matters to you but you are a great writer and had me captivated. Then I realize it is a true story and you are real and you are hurting :'(

If you dont mind me asking. Where did you get your surgery done and by who? Was it at a center of excellence?

I'm still pre-op but stories like yours keep me level headed and remind me that this is a tool not magic. And it is a very serious surgery that shouldn't be taken lightly.

I hope you feel better and I'm keeping you in my prayers

[LizInTexas 125]

I, too, am very interested in who your surgeon was and which hospital you've been treated at.

[SarSmyle 37]

So sorry to read about all your struggles... Sounds like a nightmare... Sending you hugs and prayers and hope that you can have some good news soon... Wish you all the best...

[jhansen71 257]

I agree you are a great writer. Have you thought about going to a completely different weight loss surgeon for a 2nd opinion and another leak test? It sounds like no one wants to admit any guilt here and even if you had a true leak or a true clot in your lungs maybe your Dr is afraid to take blame for fear of malpractice. An unbiased surgeon can do his/her own testing and put your mind at ease or figure out what is wrong. It's just a thought. I'm worried about you and feel so sad for you too. Take care as best you can and keep us posted. Hugs!

[phatdivabbw 86]

My heart is breaking for you. Where are you? Can you see another surgeon? I'm in NJ. My surgeon is Dr Nusbaum but I'm seem by his physician assistants. I haven't seen him since the day of my surgery. I wish I could help you. Keep reading the forums. Maybe you can find an answer somewhere. I will keep you in my prayers do not give up! Do Not Give Up!!

[Miriam 50]

I'm so sorry to hear about your horrible experience - this is every patient's worst nightmare, I think. In the hospital, when I saw how negligent some of the staff was I got so scared about coming back if something happened and just prayed that my recovery go smoothly, but what you've undergone is something I never even dared contemplate or I probably wouldn't have gone through the surgery in the first place. Wishing you a safe and speedy recovery from here on in, and please keep us updated on your condition.

[abbybeep 53]

I'm so sorry you are going through all these terrible things. My surgery was on 8/6 and I have had some complications. I think it feels the worst when you can't find anyone who has a similar situation to yours. I have not been able to find anyone who got a stricture within the first five days, as I have. I have reached out on this site and others- and sometimes I feel more alone because all anyone is saying is "it gets better," and "one day you will love your sleeve." and all I can think about is "will I ever be able to drink Water again without throwing it up," as I sit in a hospital bed.

Bottom line is- I was expecting something different too. They talk about the risks and everything as if they are not significant. They don't mention the horrible things that happen to the 1% of the population that has the sleeve becuse it doesn't seem relevant. So, here we are, that 1 or less than 1%, and we are miserable :/ know that you aren't alone in wondering "what have I done to my body??" just keep fighting the good fight- maybe youll find someone who had the same thing happen...