Jacqui (jacqui) wrote,
Jacqui
jacqui

Hi Everyone,

I'm upset and felt like this would be a good place to vent some of this frustration and hurt. My experience in trying to get laparascopic route and y bariatric surgery has been such a long, drawn-out, emotionally-draining, challenging, and hurtful process that I just want to give up. I'm not going to, at least I don't think I am, but God it all just seems so unfair.

At this moment in time I have seen my surgeon (Dr. Carson Liu), had my consultation, and only because I called upset today, because I truly feel like this surgical department has given me a major run around, was I able to learn that my surgery date has been pushed all the way to the end of March, March 25 to be exact. This isn't acceptable to me, nor is the fact that we, as patients, desperate to have this surgery, are treated like children who must run around and through an entire gamut of hoops and obstacles, merely because these surgeons and their staff are overwhelmed by the need and demand for this surgery.

I feel so toyed with and put off. I feel like a number as opposed to a person or even a patient. "Well, let's see, we have too many people wanting to get in here, what can we do to weed some of these people out?" "Oooh I know, let's force them to try to lose some weight on their own. Yeah we'll make people who can't lose weight on their own, and who are therefore finally willing to undergo a life threatening surgical procedure, to endure the humiliation of being told they have to lose weight before we'll perform the surgery, that is supposed to help them lose the weight they can't take off on their own." Makes sense, if you want to run people around, and treat them like naughty children who are non compliant and won't be able to follow the dietary restrictions post surgery. You know Mr. Clinic Director, one does not necessarily preclude the other.

My having polycystic ovarian syndrome, fibromyalgia, arthritis, and my being insulin resistant, might just have, oh a little something to do with the fact that taking off weight is very hard for me. Once I have surgery, and my stomach can only hold so much before I will vomit, or die, and the hormone that is perhaps causing all of this hunger in the first place, will be reduced, well, then yes, I will certainly be able to follow their protocols. Their wanting me to prove it to them now, by demonstrating that I can be a good little girl and eat only what they want me to eat, makes me want to march in there and throttle someone. Dr. Heber maybe.

Oh this is too funny, my phone just rang, just as I'm writing this, and it was a UCLA patient relations surgery representative calling to see how I would rate my level of care so far with regard to this surgery. Hah, what level of care? I'm just a number, a cog, just slightly more than nothing to these people. If I didn't call today I might, and I do mean might, somehow get processed through this system and wind up with a surgery sometime next year. Maybe.

Anyway my story so far goes like this; For years and years I had been thinking of having this surgery. Three years ago, friends of mine who know Carney Wilson tell me she is going to have the surgery in August. I decide, rather cowardly, that I will wait and see how it goes with her. As I continue to gain more weight and try every diet known to man, lose weight, and gain back the lost weight plus more, until it finally became clear to me that I had to do something drastic before it was too late for me to do anything at all. Carney's surgery goes well and a year (or is it two?) later she gets lots of press and I decide that I have to do this.

I contacted the UCLA department of bariatric surgery a year ago December, that was December of 2001. I was told that yes they did do laparascopic incisions, the Route and Y type of surgery, and that their best doctor had a waiting list of about six months. I made an appointment to see Dr. Livingston for June 27, 2002. I was told at the time to clear my schedule for July as that was when my surgery would most likely be. I canceled all kinds of summer plans and braved onwards.

Of course as the date got nearer I became more anxious but kept putting one foot in front of the other and trudged forward. One week before my appointment I called to confirm my date, and in speaking with the secretary I happened to mention that the reason I had been willing to wait so long for Dr. Livingston, was that he was considered to be the best, and was doing the newest techniques, specifically the laparascopic incision, which from everything I've heard and read is the way to go, minimally invasive, less painful, faster recovery time, no huge midline incision scar. But when the secretary heard me say this he said, "Oh there must be some misunderstanding, Dr. Livingston doesn't do laparascopic. It's Dr. Liu who does that. Wow too bad, you could have had your surgery with him by now." Dr. Liu's waiting list had only been two to three months at that time.

So now I get shuffled off to Dr. Liu. No getting in sooner because of the misunderstanding, just a "Too bad, there isn't anything we can do about this. We can't take away someone else's consultation date and give it to you. You'll just have to get in line behind the others and wait all over again." So I get in line again, this time I'm told I'll have to wait for an October consultation with a December surgery. Making my wait for just the consultation a whopping TEN MONTHS.

When I go to my consultation appointment, the first week of October, I am made to wait three hours, THREE HOURS, in an uncomfortable waiting room, with no magazines, no one kindly explaining how long the wait will even be, nothing, just wait. And it isn't an easy wait, this is a big deal surgery we are choosing to undergo, people around me are talking about their recovery, what they've been through. Most of it is positive but one woman tells me that she almost died, was airlifted to another hospital, and was in a coma for twelve days. Another woman tells me her surgery site leaked and that she had to have the surgery redone eighteen hours after her initial operation and that something else horrible happened and she was in the hospital for seven days. They both say they would do it over again in heartbeat.

Okay, I brave through this, this is the decision I've made. I wait two hours in the main room. Finally I am taken in to the suite by a nurse who weighs me and tells me that there is no guarantee they will accept me. So now I have to worry about that. Then I am taken to a small cold room where I am again made to wait, this time for an hour, alone, by myself, with nothing to read. I sit and worry about whether I am too fat for the fat loss surgery, if this is the case, what will I do?

A nurse or maybe a doctor comes in, I don't know, she barely speaks English. She asks me a lot of questions, most of which I have already answered many times over on various charts and applications, par for the course. No matter I cheerfully answer all of these personal questions. She asks me to undress and examines me, looks under my boobs, around and under my stomach where my pubic bone is and says, "Did good, no skin infections." Mortification.

I am told to wait some more, so I wait...some more. Finally a weary Doctor Liu comes in, barely looks at me and collapses in a chair. He tells me I am too fat and will have to lose weight before he can perform surgery. I beg him, I tell him my story, how long I've waited. He says, and this is a direct quite, "Woah you really did get the run-around." Great, that helps, my confidence level has gone up tons thanks. When he asks about birth control and I tell him that I was on the pill but went off of it because my sex drive disappeared, he makes a joke about it having being a really good birth control method, since it made me not want to have sex, ha ha, and it sails over my weary frightened head.

He asks me to lay back. He lifts my gown, taps on my belly, makes remarks to the other woman (the doctor or the nurse, I don't know what she is), about my stretch marks. "Mmmmm stretch marks," "Mmm yes, I see that." They don't tell me anything about this, what it could mean. Then he taps on my belly some more and says, "It's too tight here, your organs are all being pressed on, your liver is all covered in fat. You will have to lose twenty pounds for me to do this surgery. Lose the weight then come back." I start pleading and begging, "Please give me a surgery date, I've waited so long, I'll lose the weight." "Okay, I'll give you a date, but if you don't lose the weight then we'll have to reschedule," he says. He tells me to go see Kimberly and she will assign a surgery date for me. I don't trust anyone around here any more so I make him shake my hand, which he does, a promise that I won't have to wait any longer than February if I can lose the twenty pounds. They leave the room and I start crying, I am too fat for even the most drastic surgery for fat people. I feel so dejected, a freak.

Dejectedly I make me way out to the waiting room where I will wait again for someone to call me to come in and set this surgery date that I have been promised for so long, this precious surgery date. Out in the main waiting room I notice that there are people here who are fatter than me. How is this possible? If I am too fat for the surgery then how did these patients get operated on? I ask and people tell me, not to worry, they tell everyone that they have to lose weight. It didn't used to be like this, someone decided that we have to prove to them that we can follow their diet or some kind of weight loss plan. It weeds people out. Why didn't they tell me this? Why didn't they have enough compassion to know how hard it would be to wait ten months and three long hours only to have a super weary doctor come in, tap my belly and tell me I'm too fat? Why not tell the truth, that they ask everyone to lose weight, why make me feel like a freak?

After more time spent waiting and listening to gory stories, I am taken to see Kimberly, who seems nice enough. I remind her that Dr. Liu promised me a date in February. February seems impossibly far away, a long time to keep thinking about this and worrying, but I am relieved to at least have a date. She apologizes and tells me that for some reason she can't give me the date right then and will do it tomorrow no matter what. Not to worry, she'll mail all of my papers out tomorrow. I feel like a child who has been let down one too many times, someone who has been promised things by the people she should be able to trust but who now has become wary of. "You promise?" "Yes, absolutely, we just need to do bla and bla and bla, and then we'll get it right to you."

Weeks go by and no surgery date, no papers, nothing arrives in the mail. I am starting to worry and think that I am getting screwed over again. I am just about to contact them when another woman, a sweet younger gal I met the day of my appointment, calls and tells me that she is going to be having surgery in December. They made special arrangements to get her in sooner. I completely understand, she has a special situation, she needs to get this over with while she is out on break, before she goes away to college. I am happy for her. But I am also sad because this means I really am getting shuffled around because I haven't heard a word. The only people who seem to get taken care of are the ones who write or drop in or e-mail. I don't want to have to be a squeaky wheel for the privilege of paying forty-thousand dollars out of my won pocket for a surgery as serious as this. I want to be treated fairly and ethically. I need to be able to trust these people into whose hands I will be entrusting my very life.

All of which brings me to today when I call in and debate all of this with the secretary over the phone. Lots and lots of excuses and good reasons for why all of this happened and a promise to try to get me a sooner surgery date. I hope it happens, but it's all so disheartening and kind of frightening.

I'm particularly disheartened by this, lose-weight-prior-to-surgery thing. I am going to do my best, I am willing to do anything to get this surgery, but the way I have been treated up to this point seems so dispassionate, arbitrary, and unkind, it brings up all of my rebellious inner child antiauthority stuff, and I am left feeling weary and exhausted sad and hopeless. Sorry to drag you guys through all of this. I just really needed to get it out.

Hugs,
Jacqui

PS: Please don't post any comments questioning my decision to have this surgery. I just don't want to have to respond to anything like that any more. I'm sure you guys care as I do about you, but it took me a long time, and a lot of consideration went in to making this decision. I am where I am and just don't want to debate this anymore. I just want to get the surgery, and am mostly just needing to vent about the process. What I'm not certain of is whether I am with the right people. Although I called Cedar's and their surgeries are completely booked through January of 2003 as well.
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