Grn4MyEyes
Before you read my story please know that I in NO way think my surgeon is responsible or could have prevented ANY of the complications I've endured. The complications are and can be fairly normal, but how I myself reacted to them was just that, my own bodies reaction to them. I love my surgeon and have actually referred anyone I know that has needed some kind of surgery to him. =) Anyways, my story is a long one that started the week after my surgery when I developed salmonella poisoning that pretty much put me on my @$$. The rest as they say is history.
Pull up a chair,sit back and relax, get ready for a story that's too damn good to be real..hehe. . As it stands right now I have 5 Dr's on call, and I have a hand typed by myself medical journal that takes up almost 3 pages as of right now and grows larger every day..LOL (Makes telling new Dr's easier than trying to explain) More or less the story of it is I developed a peptic ulcer in my new pouch they think came from the salmonella, since peptic ulcers are caused by H.Pylori virus. The ulcer kinda went out of control. In fact my gastroenterologist and surgeon have consulted on future problems related to my extreme case.. So it sucked to say the least. I ended up not being able to eat or drink anything about 3 months after the surgery. They did an endoscope and they found an ulcer that took up to 90% of the new pouch, and was resilient to the medications to heal it. I lost 200lbs in the first 8-9 months after the surgery.
Normally, one only loses about 80-100lbs during the first 6 months. I obviously exceeded this. It just got worse. I eventually dropped down to 96 lbs. I couldn't move, was so weak, was completely malnourished, and they didn't know how to fix it. They had to figure out how to save my life as at this point, they gave me 6-8 months to live as I was literally starving to death slowly and my organs were slowly having problems. First, they couldn't remove the ulcer because that would in entail moving the rest of my stomach and a 90% chance of the ulcer returning at the base of my esophagus. Second option would be to insert a very small feeding tube down my nose into my pouch to feed me that way, but that wouldn't work because my pouch couldn't handle anything on it ever. Third option was to put a feeding tube into my side into my old stomach and feed me that way to try to get my immunity up and hopefully heal the ulcer that way, and lastly would be to put a PICC line (a long semi perm IV)into my arm and thread the IV line from my upper arm up the main vein which goes directly to the heart and to start me on TPNs, which are bags of nutrients. (proteins, vitamins,etc)
All options they weren't comfortable doing because my immune system was so weak, they didn't think I'd survive any of those, and the last was really a last option as they were afraid my heart was too easily a target for an infection. They finally opted on trying to put a feeding tube into my side. I went in for the procedure, but they couldn't do anything till they found out where my liver was before they inserted the tube, because based on the bypass surgery depends on where the liver was put. (in front of the bypass line or behind it). My surgeon was in surgery himself so was unable to be reached so they did a CT scan and found out that my old stomach had died and shriveled up to nothing, and my liver was shriveled up as well. So that feeding tube was nixed. The only option really left was the PICC line to my heart and an at home nurse to take care of me to avoid infection and such. So they put in the PICC and started me on 24/7 nutrient therapy. The ulcer started to heal slowly, but about 2 1/2 months into the therapy I developed a tightness that ran from my right arm across my chest to my left arm (PICC was in right arm inserted about halfway between elbow and armpit). My nurse didn't see any infection in the insertion point.
We called my gastro and they said get to the ER...Well to be honest I didn't go because to be honest I'd spent so far almost 7 months of the year in Memorial hospital (this was barely Sept 2006) with all sorts of problems, dehydration, malnourishment, salmonella stomach flu,anemia,vertigo, the list goes on). I didn't think it was anything bad, it wasn't a debilitating pain in fact no pain really at all. It was just really a tightness in my chest, and the best way to explain it would have been like being outside on a very humid day. Just the tightness one feels when breathing. Well next day it was still there so I called to get into see my surgeon and he said no...go to ER. So, dammit I went..LOL. Apparently after much blood work and 27 needle pokes they found out I had DVT (deep vein thrombosis which is a fancy term for blood clot) in my right armpit. They didn't remove the PICC because they thought it was in the same vein as the IV thread, but a CT showed it wasn't. So they removed the PICC put in the other arm, and started me on blood thinners. Wellllllllll they didn't get clearance from gastro or surgeon about any of this, because they stupidly started me on them WHILE I had a bleeding ulcer still. They got ahold of my gastro and he freaked and told them to stop me on the blood thinners immediately as they may have very well just killed me and made my ulcer worse, and he'd be in asap to perform an endoscopy himself as he didn't trust anyone else at this point to see what more damage was done. Soooooooo that morning around 5 am he did one and guess what...my ulcer was gone!!!!! YAY!!!
I was released on Saturday night with NO PICC line since the ulcer was gone, and sent home with a semi clean bill...HAHAH..that's soo funny. Monday night I ended up in such severe pain I thought someone was ripping my insides out and my husband called an ambulance, and once I got to the ER, guess what? I had a bad gallbladder, that needed to come out..LOL This story does have an ending..I promise..LMAO.. Anyways, they stabilized me and allowed me to go home and scheduled an appt to see my surgeon to set up a time to remove the GB. So that was Monday night, Tues morn I saw my surgeon who scheduled my removal for the following Tues. I went home and come Friday I started having gas/indigestion which for me was normal cause of all my problems, but by Sat it was really uncomfortable, and by Sunday I realized it wasn't going to stop so back to the ER and the scheduled me for an emergency GB removal for 6am Monday morn. So with my husband out of town I had the removal and literally was able to come home that night cause I felt ok, was able to pee and take my pain meds. I went home..HA-HA big mistake by the next morn I was in so much pain I couldn't move, and ended up back in ER..LOL My muscles were just so weak from all the previous stuff the GB removal just took allot out of me, so I stayed in overnight, while they kept me doped up lol.
It took me 2 weeks to recover fully, and stop the pain meds which was funny considering my bypass was major surgery and was in the hospital 3 days but completely fine by day 4 and off the pain meds..LOL But anyways, we kinda all started thinking (Dr's included) some of my problem might have been my GB to begin with since I had a couple months of being ok. Fast forward Jan 2007, and ulcer is back bigger, badder and worse. Then all the other crap started...Found out I have muscle problems (including heart), fibromyalgia which explains why I was always in pain for years, NOT just that I was fat like they said. I still had the ulcer, but this time I was able to keep meds down,but still can't even now eat much past soft foods.
Ummm, hmm, Around March of this year I ended up getting weak again, noticed a lump in my groin. After a month of it not going away I went in found out it was my lymph node swollen. Did some blood work,. My white blood count was way down, my liver function test was bad. So with no symptoms other than enlarged node in my groin,and the low WBC(white blood count) Mark (Messinesse who's my regular Dr) started doing all the immunity tests (Hepatitis, Herpes, thyroid,lupus, rheumatoid arthritis, etc) everything came back normal, except the WBC which was lower this time, and the liver test still abnormal. All vitamin levels normal, etc. So he did 1 more test (3rd time in 3rd week)....Same thing...lower WBC again this time, and this time groin, armpit, and throat lymph nodes were all swollen...
So NOOOOOOOOOOWWWW lol I've been sent to an oncologist. He did a full full panel of blood work. He found same, low WBC, liver abnormal function, and this time he did more testing and found that I had a couple of viruses...EBV (Epstein Barr Virus) and CMV(cytomegalovirus). Both viruses lie dormant in every person, but they rarely get triggered and not to the extreme which mine did.(they are the viruses that cause things like herpes, hepatitis, lupus, mono, etc) Normal *abnormal* testing is around 1500....My levels were 2986, and 2453. The Dr was like you must have studied hard for this test cause you got WAY WAY extra credit lol. So at the moment those virus levels are still very high with no reasoning as to why. I go back in 6 weeks for another panel...These viruses can take months and months to clear up as it usually takes your body a while to form it's own antibodies to fight it off, and in someone like me with hardly any immunities of their own it's doubly hard. The last thing thing the Dr is considering although he doesn't want to go there yet is lymphoma (non-Hodgkin's form). So we'll see where things go. I have good days and bad days. I still have an ulcer, and trouble keeping foods down, but not as badly as before. The Epstein Barr Virus is associated with Chronic Fatigue syndrome, so obviously I'm tired as hell most of the time and in chronic pain. I'm on a morphine patch that helps with the pain, plus a few things to help me sleep, and help the ulcer. Right now I just take it one day at a time.
A link regarding information on ulcers....and H.Pylori..
http://digestive.niddk.nih.gov/ddiseases/pubs/hpylori/
A link regarding the virus I have and what they entail..Please note I do NOT have Mono although EBV and it go hand in hand...EBV causes other things as well if you'll note..
http://www.medicinenet.com/chronic_fatigue_syndrome/article.htm
http://education.yahoo.com/reference/encyclopedia/entry/EpsteinB
http://www.answers.com/topic/epstein-barr-virus?cat=health
