I am overdue for an update on my Moffitt appointment(s). Sorry for not updating sooner. I've even gotten e-mail asking for an update(SORRY!) I am SO SO SO THRILLED with the entire experience so far. Everyone there is so wonderful & caring! Such a change from some of the doctors I've dealt with. My first appointment actually began disasterously. We left home on time, but being a 2hr drive, you never know what you're going to encounter. We hit MAJOR road construction back-ups and I think, a traffic accident...We ended up being over an hour late for my appointment. I was MEGA stressed, as I was getting out of the van I spilled an ENTIRE mug of ice water on myself. I spent the entire drive there fighting with the website trying to get my new patient questionairre filled out because I'd had problems with their server. I didn't get it done before the appointment...Needless to say, I was STRESSED...I got in, knew I wasn't going to get to SEE the doctor, but I hoped that I could at least get my paperwork done, meet with the nurse and get into the system to re-schedule my appointment. This is not what happened...The receptionist ran down the hall and caught the doctor just as he was walking out the door and asked him to talk with me before he left. She left the paperwork for after I talked with him, gave me my wrist band and brought me back to a room with the nurse. As stressed as I was, I was immediately relieved. Dr T. took time out to talk to me about the history of my Thyroid nodules, what tests I've had done and what tests were most likely immediately needed. He did an exam of my Thyroid and reassured me that we'd get things started right away. I gave him the copies of all my records that I had made for him & he ordered all the tests to get started. He wanted to see me back in a week! I've never had a doctor want to see me back that soon. I know he had somewhere he was supposed to be, he made HIMSELF late for an appointment to see ME...It took a whole lot of stress off...After the very brief meeting with him, I had to run to the lab & get bloodwork before they closed & then come back to the clinic and fill out all my paperwork. The wonderful staff in the clinic had me do the paperwork LAST so that I could finish everything else that needed to be done that day. They scheduled my Thyroid ultrasound for just a couple days later. I had that done and had the followup appointment on the 10th. My follow-up appointment was as wonderful an experience as my initial experience. Not surprising, the nodule on the right side has been followed all along has gotten larger, but what I didn't expect is that the small nodule on the left side has gotten to a significant size as well. I'm having a Fine Needle Aspiration Biopsy on both sides this coming thurs(Nov 17th). This is the first time that the left side will be biopsied. I've been through these biopsies before, so I'm not nervous about the procedure, but I am nervous about the outcome...Also at my appointment last week I talked to Dr T about the Adrenal Dysfunction question that has gone back and forth a few times and that I've felt better when I've been on the supplements and on the Hydrocortisone when I was on it for a short time. I explained that the Endo that I was seeing last just flat out denied that it was a possibility. Dr T seemed shocked and appalled that a doc would brush off the possibility of an Adrenal problem with my symptoms. He ordered the bloodwork to be done immediately, so I had that done right after my appointment. Depending on how that initial bloodwork comes back, there is a secondary test that is done that involves an injection and waiting around for a few blood draws over a few hour time frames, but we suspect that I'll be having that test in the next week or so as well. I just have to wait for the results from the first test. Dr T's nurse also wrote me a referral to the GI clinic so that I can start seeing the GI docs there and hopefully get some more in depth testing and some ANSWERS to what's been going on. My current GI doctor has not been co-operative in finding answers, she has just wanted to treat symptoms, which is not OK with me, especially since I've been hospitalized no less than 4 times since she's been my GI doctor. Something is seriously wrong...Also this week I see my neuro-surgeon for follow-up on the x-rays I had taken about 6 weeks ago. Hope all is good with my spine and my hardware, last appointment he said there is a *chance* of some tethering of my spinal cord, but the MRI was really hard to read, there was a lot of scar tissue. This could be contributing to some of the weakness issues I've been having, but any residual effects from tethering would level out & not continue to get worse, so if that's the case, I shouldn't continue to get weaker. It does not explain the peripherial weakness I get in my wrists though. I'm optimistic that everything will be good with Dr R when I see him for my follow-up, but there is still questions about the tethering and how to tell what's going on there.
I think that covers most everything right now. Obviously, lots of appointments as of late, I'm sorry I've not updated sooner...y'all have to keep on me to do so sometimes.. :)
Nov 14, 2011
Oct 24, 2011
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 :)
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 :)
Oct 5, 2011
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.
Aug 24, 2011
Mar 19, 2011
Crafty Stuff -The Original ScrapBox
Hey y'all,
I'm getting back into crafting, after a long hiatus...it's something I can do even when I'm not feeling great. :) and since I'm a sucker for a contest and/or freebie...AND it's National Craft Month. I figured I'd send y'all over to The Original Scrap Box's facebook page to check it out, since they're having a giveaway in honor of National Craft Month....and to plug for them to up my chances to win :) So, here's their page, go check 'em out.
Mar 6, 2011
Untitled
Who would have EVER thought jelly bracelets would come back into style??? D*MN I'm getting old
Feb 16, 2011
Walking/Rolling for a friend's daughter
In Oct my friend Emily's gave birth to a beautiful baby girl named Allyson. Unfortunately, Allyson has been diagnosed with Cystic Fibrosis. She has already proven that she's a little fighter as she had surgery when she was still only days old and she has just recovered from a battle with MRSA. In April I will be participating in the Cystic Fibrosis Foundation Great Strides walk to raise money for the cystic fibrosis foundation to use for research care and education. I will be participating on April 16th in Orlando on Team AllyBear & would love it if anyone could donate anything that they could to help. I posted a widget on the top right of my blog page, but, you can also use this link:
Thanks everyone.
'Chelle
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