Mar 23, 2009
I have a few medical issues myself but my main focus is my husband, so this blog will likely be more about him than me...
Back in July 2004 I had to rush my husband to the ER... It didn't take long for the docs to see he had severe acute pancreatitis and they admitted him. By the next day he was in the ICU with a TPN (tube into his chest to adminster meds and fluids). Dilaudid was the only thing that gave him any pain relief. A week later, he was moved out of ICU (after the TPN was removed) and into a private room and they gave him a PICC line. Two weeks later he was released but a week later he had to return for another week as the PICC line had thrown a blood clot. Over the next couple of months, he recouped at home and slowly began to return to work - at first as part time and then back up to full time. By the way the cause of the acute pancreatitis was high triglycerides and hyperglycemia (he was diagnosed then with type II diabetes).
Ever since, he would have occassional bouts of left, upper abdominal pain and his primary care giver at the time would prescribe Dilaudid (usually just leaving the script to be picked up without even examing him) and sometimes we had to go to the ER because vomiting would cause dehydration.
Fast forward to October 11, 2006. Our youngest son was only 12 days old and my husband suffered a myocardial infarction (heart attack). He had to go to the cath lab and a stent was placed, effectively stopping the heart attack. He was in the hospital for a week and then released. By now, his medications were outrageous (still are). He takes so much medicine he has to have his liver checked several times a year. His diabetes was not under any kind of control. His blood sugar was regularly over 200 and sometimes over 300! We switched endocrinologists and she managed to get his blood sugar at much better levels. He's actually on an insulin pump now.
I also finally managed to talk him into seeing a new primary care doctor. His was refusing to see him over a lowsy lab bill that we were paying on and his office wouldn't even give the doctor messages or refill any meds until the bill was completely paid off. ER visits had increased since he couldn't get any pain management from his primary care doctor. So we see the new primary care doctor and they refer him to a GI doc (which the original primary care doc should have done LONG ago!).
The first thing the GI doc does is an EUS (endoscopic ultrasound). This revealed that while he was not still suffering from recurring acute pancreatitis (which we had thought that's what it was) he did have severe gastritis. There were nodules in his stomach and they biopsied a few - which thankfully were negative. The EUS also showed scar tissue on his pancreas which was evidence to a history of pancreatitis. The next test was a stomach emptying test. The results of that were incredible! In the 90 minute test, his stomach didn't empty anything! Essentially his entire stomach was completely paralyzed (called gastroparesis)! He was put on Reglan and did okay for about a month then he started getting sick alot (vomiting, nausea and diahrrea) and he had increases in his pain - so his pain medication (still Dilaudid, yes he was taking Dilaudid - which is essentially heroin - for more than four years! No worries, he never abused it and usually took way less than what was prescribed) was uped and he was taking 4mg at night. As 2009 began, his symptoms got worse. They had tried upping the dose of the Reglan to no avail. The next step was a Botox injection in the muscle that connects the stomach and small intestines. That was done the first week of February - exactly one week later he had to be hospitalized.
His health had rapidly declined in that week following the surgery. He couldn't eat or drink anything, was completely dehydrated, in constant pain, was throwing up and having nonstop diahrrea and he could barely get out of bed. They did another stomach emptying test during his two week stay in the hospital which showed no change in his gastroparesis. They also ran other tests, though I can't remember them all off the top of my head. He was also put on erythomicin which has a big contraindication with the Lipitor he's been on for years! In the meantime his GI doc had referred us to UNC in Chapel Hill. We had to drive up there only two days after he was released from the hospital! It was a terrible trip! He had to have Xanax just to be able to go (the day before we left, we had gone to the bank and he got sick all over again and also was having panic attacks - so to make the trip from Charleston, SC to UNC Chapel Hill, NC he was taking 1mg Xanax a couple times a day). We even had to stop in Lumberton, NC for an hour because his infusion line to his insulin pump had gotten caught on a door and pull out. He had been out of infusion sets and the supplier was taking forever to get them to him. So I got to the closest pharmacy and had his endocrinologist call in a prescription for needles so he could just inject the insulin himself. In the meantime, he called his pump supplier and they actually overnighted a couple of infusion sets and put a rush on the rest of the delivery so he would have more after we got home.
Anyway, we were at UNC for about four hours talking with a doctor and then a motility specialist joined us. Basically, it was a wasted trip. They couldn't do anything for us. They wanted a CT angiogram done as well as a Lactatose breath test (CT angio would check blood flow into his stomach - hey, he'd already had one artery clog so they wanted to rule out that possibility and the breath test was to check for bacterial overgrowth in his stomach). They also seemed a bit surprised that two stomach emptying tests had been done while he was taking narcotics for pain. So they wanted him weaned off the pain meds completely so that another stomach emptying test could be done, revealing what was gastroparesis and what was complications caused by the narcotic use. All of these tests could be done back home so we made the trip back home.
BTW... while he was hospitalized we started the process for short-term disability (that was in early February this year and we are still on it with not much hope of him being able to return to work anytime soon). It was well into March before we saw our first check! Thank the good Lord our families live here and they were able to help us out with groceries and bills and stuff!
The CT angio was done - negative. He was also moved to 5mg of Oxycodone to start getting him off the meds. The breath test was done and it made him extremely ill. The nuses there refused to leave their department long enough to take him to the ER after the test so I took him myself. The ER doc started to treat him for pain and nausea and was giving him fluids. Then the GI doc's physician's assistant (PA) stepped in and stopped the treatment. She said he needed to be admitted for observation and they were going to put a tube down his nose into his stomach and not give him any medication for pain or nausea. This was kind of the straw that broke the camels back. We were working to get him off the pain meds but after that breath test, he really needed help that day. All they were offering was torture and to top it off, the PA said they had already tested for bacterial overgrowth and that it was negative! He signed himself out and we made an appointment with a new GI office for a second opinion.
The new GI doc agreed that he needs to try and come completely off pain meds and will redo the stomach emptying test (he will run out of lortab 5mg this week and that will be the end of it). He also started him on Align (probiotics) and Viokase (pancreatic enzymes). He felt since the EUS did show some scar tissue on his pancreas that he may be suffering from pancreatic insuffiency and he also wanted the gall bladder function tested. There had been many ultrasounds to check for gallstones but no one ever checked the function before. This new doc seems to be looking for other possible problems and not just saying "okay, it's gastroparesis. live with it." like the other GI doc office was.
So the gall bladder function test was done this morning. Later in the day I got a call from the first GI doc's office saying the results of the breath test were positive and that she was calling in an antibiotic for him to start taking right away. She inquired to a missed appiontment and I told her we were getting a second opinion. I also told her of the PA's actions and that the PA had said he was tested for the bacteria in the hospital and that it was negative. I'm kind of hoping that that GI doc will call me himself, but I'm not holding my breath. ;-) I followed up with the current GI doc's office to tell them the result and make sure the antibiotic prescribed was agreable to them.
So hopefully one of his symptoms we now know to be caused by the baterial overgrowth will go away over the next week, week and half and we can start to really find out if he has gastroparesis and if so how severe it really is. Then we can treat him from there. So that's my story about my husband's ordeal. I pray that things start to look up for us soon! Thx for reading!