Home from the hospital...again and more....

Hospital Saga


The reason I went to the hospital was severe nausea, dizziness, GI pain, the worst headache I'd EVER experienced(I get migraines and I've had a headache due to a CSF leak before),  I hadn't gone to the bathroom in over a week. Once I got into the ER I started vomiting as well. I had felt like I was going to for days and; every time I woke up I thought I was, however I never DID until I was actually IN the ER.


I am happy to be home from the hospital & feeling much better than I was a week ago...However I am extremely frustrated that I spent a week in the hospital(TWO hospitals actually) and only saw a GI intern at the first one once, for about 3 minutes and; NO GI DOC WHATSOEVER at the second hospital the entire time I was hospitalized. I dealt with arrogant docs that had less knowledge of the type of GI issues I have than I do and yet they refused to call in a GI consult. I was at the first hospital, where MY GI doctor is based, for 3.5 days and from the time I entered the emergency room until the time I left AMA (due to numerous issues including being denied any pain medication for 10+hrs). EVERY TIME I spoke to a doc and every shift change I asked if MY GI had been requested yet since my family had already been in contact with my doc & she was aware that I was in the hospital, however protocol is that she has to be requested for consult even though she IS my doc and she IS on staff...Three and a half days and my doc never showed, never was requested, I never got to see her...GI testing didn't get done in a timely manner. After a number of issues, including the attending doc deciding that the most awful headache I've ever experienced, that lasted for six days was due to the "narcotic pain meds" that I was on. The headache came on after the evil evil nausea. I know the rounds of nausea, they are getting all too familiar, I knew a couple days before it got bad that I was "getting sick" I told my mom about a day before that I thought I was...I'm learning my body's signals...but this headache that came along was hellish...I've had migraines before, I even had one from a cerebral spinal fluid leak...this was worse, WAY worse...and that's saying a LOT! The spinal leak one lasted a lot longer, but it wasn't as intense and it was more describable. D*MN, they did an EEG with that one! This headache  caused a lot of drama with the doctors...UGH...Nothing like a headache CAUSING a headache. LOL... ANYWAY, after the attending doc refused to give me pain meds for 10hrs, I left the first hospital. I headed to the hospital where my pain management doc has privileges and could come see me if necessary...If nothing else, SHE could oversee the pain management portion of my treatment while the docs were taking care of my GI issues...OR.SO.I.THOUGHT. My parents, my wonderful wonderful parents(I would be lost without my family!!!!) drove me nearly 2 hours from one hospital to the other. Initially, the second hospital was an improvement over the first, I didn't have a 3hour wait in the emergency room. The emergency room experience was great(as usual) and I was admitted quickly. My pancreatic enzymes were still through the roof. However once admitted things changed. To begin with, the attitude of the attending doctors towards me was astounding. The attending actually SAID that my spinal cord wasn't damaged!!! OMG! I should have asked at that point for a different doctor. I keep forgetting that I have the right to request a different doctor/team of doctors. Any doctor that does not comprehend that a spinal cord injury at L1 does not involve the spinal nerves should not be practicing...PERIOD...His assistant whom I dealt with more than I did him actually flat out LIED about speaking to my pain management doctor and things that were/were not said...Little did he know the type of doctor my pain management doc is. She actually CALLED ME in my hospital room and totally blew apart his lies(I <3 Dr Harper! She is AWESOME!). When he was standing there telling us that he had talked to her and that she told him all about treating my GI problems and that she didn't come to that hospital we knew he was lying because she doesn't treat my GI problems and she DOES come to that hospital(Her partner is part of the rehab team right down the hall from my room)...He had to have talked to my GI doctor as well, but he tuned out anything other than I've had  and have appointments scheduled with a number of other specialists...They didn't want to do ANYTHING once they knew that I had multiple issues going on. They refused to even call in a GI referral for my CURRENT complaint, even though my pancreatic enzymes were high, I was throwing up, nauseaus and in extreme pain.  The attending was going to discharge me when I had still not had anything to eat.PERIOD. I had not been able to keep anything down except water and he was going to discharge me. I had to file an appeal with my Medicare insurance plan. This gave me an additional 3 days to get IV anti-nausea meds, fluids, etc & let my GI tract rest. Unfortunately, due to the fact that the hospital did NOT do any diagnostic tests prior to writing up the initial discharge orders(and only one VERY VERY flawed GI test afterwards) Medicare agreed with the discharge after 3 days....Those 3 days DID give me the time to recover a bit...There was one student doc that was really awesome and she spent a ton of time with me each day getting lots of history, exactly what was going on/how I was feeling, and sharing information on the tests that I'd be having that day. Unfortunately she didn't have any pull on the team as she was "just" a student and the  attending docs were convinced that there was nothing that they could do. I SO wish that she had more clout because then I may have actually been treated

Porphyria
The one test they did that I'm waiting on results for is for a very rare group of metabolic disorders called Porphyrias. I was shocked when they did this test because I was already made aware of this group of disorders by a good friend of mine just recently & was going to be asking one of my docs(Had to figure out who it fell under) to do the test for these disorders, but had not had an opportunity. If this comes back positive, it gives me SO MANY more resources and answers. It explains SO MUCH and there are actually treatments that will help it. No matter what, I have to keep an eye on my dietary intake. It seems that food is a trigger...always a trigger...

Lactose Intolerance
Last month when my sis was in the hospital I spoke with the nutritionist and she suggested that I might ALSO be lactose intolerant. I am beginning to try to alter my diet accordingly and drink lactose free milk. I live in the world's smallest town so I don't know how easy it'll be to find lactose free cheeses and other foods. This is just the beginning and I know it'll be TOUGH as I LOVE my cheese, however if it makes a difference and reduces the problems I have, I know I need to do it. Lactaid milk and less cheese is step 1. Less cheese is TOUGH as I eat cheese flavored EVERYTHING...Even tonight, as I picked up a carton of Lactaid Milk, I bought a white cheddar flavored snack...knowing I might not be able to eat it after the first few bites, but it sounded yummy & I wanted to try it!


Nonetheless, it's good to be home. I have a plan to try to get answers and to get my records so I can get the results of the tests that they DID do...I'm feeling a bit better and determined to get ANSWERS...


Upcoming Appointment

Unrelated to this past hospitalization, I have an appointment on Tues with the Moffett Cancer Center for my Thyroid nodule. I'm excited and nervous at the same time. When I had a spinal MRI last month it showed my thyroid nodule and the size had grown from somewhere about 2.5cm to 3.7cm in the past yr and a half...I'm going in totally expecting to have to go through the ENTIRE cycle of testing again, which I actually hope. I really want to start with a clean slate, get a totally fresh opinion on it. I want to have it completely re-evaluated. I have not had the entire gamut of tests done since it was initially discovered, I've only had the annual ultrasounds and a couple of follow-up biopsies due to growth.  I'm totally ready to be told that my Thyroid is going to have to be taken out...However I'm not 100% sure what I'll need to do if that happens, besides take hormones for the rest of my life.


I will do my best to update after Tuesday's appointment...I'm trying to be better about updating this blog. Please feel free to remind me to update here :)

RIP Steve Jobs

I am saddened to learn of the death of Steve Jobs.  I am WAY overdue to post in this blog. I've had many many doctor's appointments, a couple of diagnosies and even more weaknesses, loss of function & complications come up. I've got half a dozen appointments this month and Steve Jobs' death from pancreatic cancer absolutely scares me. I've got Chronic Pancreatitis & other GI issues as well as Endocrine issues. I am going to Moffett cancer center to get a THOROUGH exam of my ever growing thyroid nodules in less than 3 weeks. I am anxious to talk to a doctor that is experienced in treating potentially cancerous conditions. My most recent Spinal MRI showed my thyroid nodule & showed it to be 3.7cm. A year and a half ago these nodules were only 2.5cm. This is significant growth over a yr and a half. I'm very worried. The only decent Endocrinologist I've had over the past 6yrs told me that my thyroid needed to be removed if the nodules got to be over 3cm. Unfortunately, due to issues with the office staff not understanding billing I can not see that doctor anymore. I'm still more comfortable going to the Cancer Center anyway as these nodules were deemed as "cold" previously & that is the type of nodule that would be cancerous....With my endocrine problems and GI problems combined and knowing that the cancer that Steve Jobs had was ACTUALLY a Neuro Endocrine Tumor I am even more concerned. I need to learn more about these tumors.  I am REALLY glad that I already have an appointment with the cancer center.