My vsg complications story - leak, abscess.

I read a post today on VST, someones complications journey. I think about mine often but have never really put it down in writing. So I am doing that now. Maybe someday it will help someone else.

From the beginning of my journey I had trouble eating as much as they wanted me to, the protein made me sick, the vitamins made me sick. Eventually food made me sick too. There are a few things I wonder if were a premonition of what was to come. I had left side pain and shoulder pain several times upon waking. I would put heat and ice (alternating) on the spots throughout the day and eventually would feel better. Chicken and vitamins made me violently sick a few times until I had bile coming up. I had a constant cough. I had major mucus. I nearly passed out at my PT visit. My NUT said if you don't eat more we will have to take drastic measures. As if I chose not to eat enough. So helpful.

I went to my primary care Dr multiple times about the mucus - he did sinus xrays, I did have a sinus infection. He also said my coughing could be my acid reflux so he changed those meds and doses a few times. Eventually I went to him regarding my shoulder pain that had become constant and unbearable. I got muscle relaxers. That and the vicodin didn't touch it. The out of the blue my Dr's offices calls and and tells me that my blood work I had several weeks before (September 24th) my ferritin was extremely high and they were referring me to a hematologist. Apparently they were thinking lung cancer with the coughing and ferritin levels. The next day I had a CT scan and the surgeons office called me within an hour of getting home saying the hematologist would be calling me but I had an abscess by my sleeve and the surgeon would be wanting me to come in and have surgery to drain it. The hematologist himself called me himself and said he had no doubt that once my abscess was cleared up my ferritin would go back to normal. If I wanted to see him again I could but he didn't think it was necessary. I don't remember the exact dates but it was the week of October 21st, I know that for sure because I went to see my surgeon on the 19th, he explained what he wanted to do but that my abscess was up by my spleen and diaphragm and he would really like the interventional radiologists to go in and drain it but he wasn't sure if they would because of it's placement. Oh and there was the possibility of a leak also. He couldn't believe I wasn't very sick with this infection. He'd see me Friday the 21st for some sort of surgery.


Well, my body just needed told it should be sick apparently because I woke up Thursday morning at 3:30 am feeling fine, went back to sleep and woke up at 6 am and had full blown pneumonia. My mom had been crabby about taking me to the CT a few days before so I didn't feel I could call her. My oldest daughter had taken me to my surgeon visit and I didn't want to pull her from work again (she is married, young newlywed). My husband was off but had just fallen asleep (he works nights so he was in a deep sleep) so I called the highschool and asked them to send my 16 year old home right away. They asked the reason and I said I needed her to take me to the ER. Needless to say they got her out quick and thankfully we live 2 blocks away and she was home in no time. I cried and gagged on the awful mucus from the pneumonia all the way to the ER. Super bad shoulder pain along with it. Got to the ER (surgeon and ER are 30 miles away) and they got me right in to a room, started 2 IV's and began treating me as if I was having a heart attack, being a woman who had shoulder pain and shortness of breath. I keep saying I have an abscess and I think pneumonia. They did a CT scan and maybe an xray, not sure, but they couldn't for sure say I had pneumonia. They went ahead and started me on IV antibiotics. In the meantime we found out my surgeon was out sick and his partner did not want to come see me, saying my surgeon would the next day. The ER staff told me he would be there and began prepping me for surgery, insisting he would be doing in that night, no waiting until the next day as planned. Eventually the partner came, said no we will wait until tomorrow as planned. They admitted me and I heard from the floor nurses that they were all extremely mad at the partner, the ER Dr yelling that he HAD to come. Needless to say I don't care for the partner. I did get moved up from a noon surgery to a 7am surgery thankfully. But wait. They had IV's in both arm crooks and couldn't get enough blood from anywhere else to blood type me and I don't even know what all else. So that was a complete nightmare and I hate lab people! My Dr talked to me in the area right outside surgery, he said how sorry he is that he was sick the day before surgery. Interventional radiology won't do the surgery because of where the abscess is, they might puncture something. I was awake in the OR, I moved from stretcher to table, listened to everything going on around me, thought about the room in general. I woke up later and couldn't believe how much better I felt. I wasn't coughing mucus and my shoulder pain was gone. Apparently the pressure from the abscess was pushing on my diaphragm and causing the shoulder pain. And as for no mucus it was because they suctioned me clean during surgery. That came back soon enough - yuck. I also woke up with a feeding tube (just in case there was a leak) and a drain. More problems with blood draws and IV's so they put in a PICC line. Those people are miracle workers. Got a blood transfusion, just one pint though. That was interesting. I got up to walk after about 4 days and my legs were jelly. That totally freaked me out. Same night, when I asked for my morphine for whatever reason I could actually TASTE it in my mouth when I coughed and that totally freaked me out. The nurse was a bit freaked too - nothing like that had ever happened to her. I eventually was moved from critical care to a regular room. My doctor went out of town the day after my surgery so his PA was seeing me, along with a few other Dr's. They tried me on the feeding tube for nutrition and it made me bloated very quickly. They finally decided I didn't have to use it. I had a upper GI at some point, standing up. It was decided I didn't have a leak so they slowly started "refeeding" me. I was able to eat more, drink more. It was as if the abscess had been pushing on everything, keeping everything squished. I was so depressed and frustrated during this stay. I can't even begin to describe the emotions I was going through. Overwhelmed would be one for sure. Our social worker for out program came and visited me and even suggested antidepressants. I was not expecting this stay, these complications. My mom even went as far to say that it was my fault for being cocky that nothing would happen, no complications. My husband didn't come when I had surgery and wouldn't come visit. He didn't think I should have had weight loss surgery to begin with. I was released on the 26th I think. I enjoyed handing out candy on Halloween to trick or treaters. I was doing good with food.

On November 7th I had a follow up and another upper GI. I felt dizzy so they had me lay down. I had to roll to my left side. There, the leak showed itself. So I was admitted overnight to be placed on the feeding tube again. It went good, thankfully. I didn't feel gassy and bloated this time. I was sent home the next night with all the goodies for it in a rush to meet the home health nurse. We got home without the pole/machine for the feeding tube so I had to send my older daughter back for it. Thankfully the nurse came back when we couldn't figure it out.

On the night of the 9th I didn't sleep good and ended up sitting up on the couch. On the 10th I progressively had more and more trouble breathing. I just figured it was the pneumonia. Something tipped my kids off as before I knew it my older daughter was here with one of my friends and had called the home health nurse to come check on me. I already had a call in to the Dr's office and they called back while the home health nurse was here. They decided to direct admit me. This whole stay is a bit of a blur a first. I know they gave me morphine again and I was pretty loopy. My trouble breathing was fluid on my left lung. I was on some major antibiotics, 3 types I believe. In the course of 3 weeks I had 3 chest tubes, xrays daily, another PICC line, and there was talk of a stent. I am so thankful I never had a stent, I hear nightmares about the pain. I walked more this time, even though it was a pain carrying the chest tube things. I had a friend come and do my nails and another friends daughter come cut my hair - I was really shedding by now. so I got it pretty short. I skyped with my husband alot. He came and visited me a few times. I think he realized just how serious it was. I just made the best of it that I could. I had visitors almost every day. I spent thanksgiving there - I feel like I cheated through my first holidays with being on the feeding tube and not having to deal with temptation. My younger daughter broke down a few days before I was released telling me she was tried of being home alone and just wanted me there (my husband works nights).  I was released on the 29th. 

Spent the next few months on the couch mostly, enjoying my vicodin (haha). I gained about 3 lbs during this time, being sedentary and on 1200 calories via the feeding tube. Thankful I had 5 night gowns so I could feel clean. I would shower about every 3 days as it was a pain to have to change all the dressings. Not to mention the hair in the drain of the tub freaked me out. I got out of the house a few times for holiday things. I am so thankful for my short term disability and FMLA during all of this. No worries about my job. I work from home but there is no way I could have sat at my desk all day.

In January I had an upper GI that showed NO LEAK!! YAY! I had a second test, this one they push a fluid of some sort in to the drain and see if the leak uptakes it. No leak showed on this one either but it did show I had a fistula from my abdominal cavity to my lungs. That was scary, having fluid go in to you lungs. Needless to say they sat me up and told me not to let anyone do that test on me again haha. I was started back on food progression, liquids, softs then anything. I think I was eating normal by mid-February. They took my feeding tube out around then also. My drain fell out on it's own in late January. I went back to work around then also. Once all the tubes were out I felt so much better. Every day was better. I was losing again.

In March, my younger daughter and I took a trip to California and we went all up and down the middle of the state from LA to Monterrey. Lots of walking. I had to do all the driving because we rented a car. I felt GREAT. Even after being so sick for so long, just being down the weight made all the difference.

I don't think about my adventure down the path of complications often anymore and it is odd to remember how it absolutely consumed my life at the time. Some things are still very clear to me and others have faded. I would have the sleeve again. Could I have done something to prevent my leak? I think maybe I should have tried harder to get in my protein. Complained louder about my shoulder pain. Maybe sooner too. Made them understand my problems. I can't change it. It was what it was. Glad it is past and what a year it has been!

Edited to add I do still have some pain? trouble taking a deep breath? on my left side lung, not all the time but sometimes I notice it. I don't know if it will ever go away. I asked if it could be the fistula still there (just last week at my 1 year appointment) and was told no, if I still had a fistula I would have pneumonia. I am thinking scar tissue.

I hope by sharing my story, it might be a comfort to someone going through complications. Possibly something to prepare a person for "what if's" - whatever. I hope it helps.