I know you have been waiting for an update after surgery

Jul 29, 2012

 I had the complete gastrectomy with Roux limb reconstruction and J-tube placement on July 6th at Cleveland Clinic with Dr. Kroh.  It was a butt-kicker, but I knew it would be.  The surgery went fine, and I'm sure Dr. Kroh has seen a lot of weird stomachs, but he said mine was very bizarre...spongy and lumpy, kind of like a muscle that has atrophied from lack of use.  I spent 12 days in the hospital.  I needed 2 units of blood after surgery, by blood count had dropped below 8.  I was also experiencing tachycardia (high heart rate), at rest my rate was about 125, and if I got up at all it would jump to the 150's.  I think in the end they chalked it up to surgery stress, loss of blood, and pain.  Pain, that's one I could do without...it's been 3 weeks and I'm still in so much pain.  I also had some atelactesis while in the hospital (collapsing of the alveoli in the lungs due to not being able to take a deep breath).  I have a huge incision from right under the breast line that goes beyond the belly button.  I still have my staples, getting them out on Monday.  I had 2 drains which they removed right before I left the hospital, there was one that was super long because it went all the way around and behind the liver, and I believed it when they took it out, yowsa!! I was on full J-tube feedings when I was in the hospital, but it's better to eat through your mouth than a tube so they sent me home without them to see how I could do on my own.  I haven't done too well, I can only eat or drink so much, it's very tight in there with esophagus straight to small intestine, no real pouch.  I went to my local ER for dehydration on Thursday, got 3 bags of fluid (needed 2 before I could even pee), also had ketones and protein in the urine (a sign that your body is using its own reserves to live).  They only let me go home because they had gotten a hold of a resident at Cleveland clinic that agreed they would talk to Dr. Kroh the next morning and get the home health tube feedings reinstated, unfortunately that never happened.  Dr. Kroh was in surgery all day, I'm still trying to sip what I can and take small bites of pudding/yogurt/anything that will stay down, but I feel like I'm back in the dehydrated gutter I was in on thursday, muscles don't work and twitch, and very little sleep.  I'm trying not to look at now, I am looking to the future and having faith that this will help.  I saw a chef on TV the other day and he had his whole stomach and 95% of esophagus removed due to cancer about 5 years ago and other than being a little thin, he was eating and really doing well.  It gave me hope to see that, a lot really.  It's hard to come across people like us, and that's why I feel like this blog and website are important...I don't want anyone to feel alone, we never are, there's always someone out there that can empathize and you just never know who you may help.  Again, I have to thank all my family and friends who keep pushing me to the next step.  This is a really difficult hurdle for me, and that's why it has been a bit since I updated.  I hope this finds you all feeling better and at least on the right path to wellness.  Hugs, Jules

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