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Hi there and welcome to my page! I’m Diana, I'm 19, and I live in Texas, which I love for the most part minus the crazy heat. I have an awesome older brother and the most wonderful parents who I love so very much. I’m a freshman in college and my major is nursing, which I absolutely love even though it’s challenging. When I graduate I want to be a pediatric nurse (I love working with kids!), and I have a special interest in hematology/oncology. For my senior year of high school (class of ’06!) I was homebound and also did classes online due to my illnesses so graduation was quite the special day. As far as my personality, I’m outgoing, like to meet new people, and I enjoy hanging out with my family and friends, doing stuff on my computer (my laptop is seriously my lifeline), watching DVDs and my favorite TV shows (Grey’s Anatomy, House, ER, and Friends!), scrapbooking/being crafty, talking on the phone with my friends, and going out and doing things when I’m up to it. I danced for 13 years before I got too sick and had to quit and miss it so much, just like volunteering at Children’s Medical Center and all the other clubs and activities at school and the community I was involved in as well. Well those are the basics about me!
Here's my story...
Up until December of '04 (well November 28th to be exact) I was a fairly healthy and very active teenager, but then I caught what we thought was just a normal run-of-the-mill stomach virus that landed me in the hospital for my first inpatient stay due to dehydration and abdominal pain. After running a bunch of tests they found no answer to this awful pain so they discharged me without much hope for figuring it out. I was already scheduled for inguinal hernia surgery the next week and after talking to my surgeon about what had happened, he suspected my gallbladder was the source of the problem. The next day I had a HIDA scan (a nuclear scan where they inject a radioactive material that mimics what your gallbladder does with bile) that came out positive for biliary dyskinesia (a low ejection fraction- basically my gallbladder didn’t empty correctly), which resulted in having my gallbladder removed along with the hernia repair... but after recovering I didn't feel better.
By the time I was admitted to the hospital for the second time in the beginning of January, I had lost more than 20 pounds- I felt so sick with eating and drinking it was awful. Because of the eating problems, they kept me NPO (eating nothing) and a few days after being admitted I had my first PICC (central line) put in my arm and was started on TPN (IV feedings). It felt like almost every test under the sun was run, both in the GI field and others, but while some things would show up, they didn't find any complete answers. After two weeks at Medical City and no full diagnosis we were flown by medical transport to the Mayo Clinic in Rochester, MN with high hopes that they would figure it out. We were there for another two weeks and while they didn't diagnose the abdominal pain or do the ERCP (the one GI test that hadn't been done) they did a tilt table test and I was diagnosed with dysautonomia, or autonomic dysfunction- Postural Orthostatic Tachycardia Syndrome (POTS) to be exact. It is a chronic illness dealing with my autonomic nervous system that involves a wide spectrum of symptoms from passing out and low blood pressure to cognitive problems and severe fatigue. They also discovered Slipping Rib Syndrome where my ribs pop out of place and post-viral Gastroparesis which basically means food travels through my digestive tract slower than normal, but we came home knowing nothing more about the abdominal pain than before we left.
Fast forward a month of complete utter frustration of trying to find both specialists and a diagnosis. I was too sick to go to school or do much of anything, and by this time we really didn't know where to turn. Luckily we have some fantastic connections that introduced us to the University of Texas Southwestern Medical Center at Dallas (UTSW), which was kind of ironic since I volunteered at Children's (one of the four related hospitals)! Through a great reference we found Dr. U- my absolutely wonderful and truly dedicated gastroenterologist who specializes in pancreatology and has seriously been the epitome of a godsend. While waiting for the results of one test I ended up in the ER again after a long night of puking and passing out, and as soon as Dr. U got the page that I was in the hospital, he knew the answer.
On April 14th I had that one test left- an ERCP that confirmed the diagnosis: idiopathic Chronic Pancreatitis, which involves persistent inflammation of the pancreas- the elongated, tapered gland located behind the stomach that secretes important digestive enzymes and the hormones insulin and glucagon. My pancreas is affectionately (not!) referred to as the Old Hag, which is quite fitting if I do say so myself. I was also diagnosed with Sphincter of Oddi Dysfunction, for which I had a double sphincterotomy during the SOD manometry part of the ERCP. There is no cure for chronic pancreatitis, except for a major surgery/transplant that I will almost definitely face in the future, but for now it's controlled with daily pain medicines, pancreatic enzyme supplements that are taken with every meal or snack (along with a slew of other meds), and close following and observation by my great GI- seriously he can tell what’s wrong by just taking one look at me- it’s amazing! Breakthrough pain episodes are the worst part of it because they come up with no warning, can last for long periods of time, and often result in hospital admissions. We tried to relieve some of the pain with a celiac plexus block, but we did it two different ways and I only had relief for a few hours.
While it was frustrating going for months without a diagnosis, we now understand why- I am nothing like the textbook presentation of chronic pancreatitis, as I’m not old, male, overweight, and a long-time alcoholic (could I be more different?!) and it’s known for being incredibly difficult to diagnose. But Dr. U now understands that "nothing is ever normal with me," and "if it's not one thing it's another." I was in the hospital for five and a half weeks at the time of diagnosis and luckily we left my PICC in, as I was on TPN again for a few weeks. I was doing great when we were discharged- all my meds were at the right balance and I felt better than I had all year.
We were home for about two weeks but during those sixteen days Dr. U’s "if it's not one thing it's another" saying came through along with a new one that has unfortunately followed me since- "two steps forward, one step back." I developed an extremely serious bloodstream staph infection (MSSA sepsis) and aseptic meningitis. This earned me yet another week in the hospital, though this was definitely by far the scariest stay ever since the infection could have gotten way worse than it already had, which was bad enough- they pulled my original PICC which cultured positive along with two other blood parts, when normally only one thing grows. I am so thankful that we went to the ER when we did and also that I was home for those two weeks and was able to gain back some of my weight, as this was such a serious infection that my doctors have said if I hadn't gained that strength I may not have survived. I was so sick that week, and honestly don't even remember much of it, which is probably not a bad thing. I had another PICC line placed in my left arm this time after the cultures were clear, and I’m not going to lie- it was way cooler than the first- it was bright purple! The normal course of treatment is two weeks on IV antibiotics, but of course I had the resistant strain and therefore spent my entire month of June hooked up to IV Nafcillan 24/7... but thankfully we didn't have to stay in the hospital that whole time! While the physical aspects of the infection are gone since I finished with IV antibiotics and had that PICC pulled, I'll be dealing with the repercussions of the infection for a matter of months.
Beginning at the end of July I started having joint pains and headaches, but we didn't think much of it. We mentioned it to Dr. U and right away he referred us to a rheumatologist. Initially I was diagnosed with arthritis and fibromyalgia, but an auto-immune disorder is possible. My rheum thinks I have a predisposition to Lupus, which makes sense because I have many of the symptoms and many of the blood tests meet the criteria, but not the ones specific to Lupus. I also have a chronic low white blood count (WBC) which means my immune system is not as strong as it should be, and a consistent low complement count contributes to that. We've also been working with my endocrinologist trying to figure out some weird things going on that don't fit into any other category- like a high prolactin level for example. Other than those few random issues that we were taking care of, I was doing fairly well.
Amazingly other than one ER trip I managed to stay out of the hospital for all of July and summer '05 was almost over- I was looking forward to school so much. I know that probably sounds weird, but I've always loved school and I missed so much of my junior year- it's just so normal! That and I was really looking forward to being a senior! The first day of August I was admitted to the hospital by my GI for a pancreatitis flare-up, which I wasn't too thrilled about, but we know the drill and how to handle everything with that. During the week I started having this absolutely terrible headache behind my eye like I had never experienced before and I was losing vision, but since I was only on the GI service the docs didn't know what to think of it and excused it as a migraine, though I've never had one. We were discharged and then ended up back in the ER all of six hours later after going to our family eye doctor where he found massive bilateral pappiledema- severe swelling of my optic nerves due to high intracranial pressure. After a lumbar puncture with a pressure reading of 330 (normal is 50-180) confirmed this, I was admitted again, diagnosed with Pseudotumor Cerebri and immediately started on the standard therapy of Diamox- a diuretic that lowers intracranial pressure. Originally we thought the cause was the Ortho Tri-Cyclen Lo I had been on to regulate my cycle, but the swelling has persisted which has ruled out the possibility of a medicine being the cause. My doctor is pretty sure there is an underlying problem and isn’t going to give up until he figures it out.
Pseudotumor Cerebri is a rare condition and just like the pancreatitis, I don’t fit the textbook presentation for it. Dr. U now says- "You're one of those people that if something could possibly happen, IT WILL!" When we returned for my follow-up appointment about the pseudotumor after I was discharged we began seeing the head neuro-ophthalmologist (basically this condition is his specialty) who we have seen every single week since this began. At our first appointment he informed us that there was still an excessive amount of swelling and then upped the dose of Diamox. We returned the next week to unfortunately hear the same thing- he upped the Diamox more, to a now extremely high dose, added Lasix, another diuretic, and scheduled surgery to drain the fluid behind my eyes, called an optic nerve sheath decompression where they actually cut through my eyes and made holes in my optic nerves to drain the fluid. This took place in two separate operations in the beginning of September and during the procedures my doctor found scarring on my optic nerves- something very unexpected and abnormal. We aren't sure yet of the cause, but will be doing in-depth testing. The surgeries were incredibly successful as I regained all my vision back to 20/20 and the swelling of my nerves was very minimal. But because of the high doses of diuretics (Diamox and Lasix) and steroids (Prednisone) required for treating the psuedotumor, I again ended up in the hospital with complications dealing with my other conditions, particularly the pancreatitis- the number one reason I have flare-ups is dehydration, irregardless of the cause. So basically the super important diuretics and steroids for pseudotumor are quite possibly the worst things for pancreatitis… and the vicious cycle began (see the journal on May 3 for an exact explanation of all that entails). I had my fourth PICC put in and started TPN for the third time during that hospitalization, though that time I came home on it for a few weeks. I had my line pulled after decreasing many of the meds, but unfortunately the vicious cycle kept going around and around with everything affecting everything else, so on October 15th (my senior Homecoming) I had my fifth PICC inserted to do fluids at home with hopes of staying out of the hospital.
I amazingly made it the entire month of October with no ER trips or hospital admits- my first for 2005! Unfortunately, two weeks after getting the PICC my pancreas flare-up was accompanied by a pesky low-grade fever, and with my history of line sepsis (the staph infection), my GI advised to get to the ER quickly… the very first day of November. Though I tried to argue we got there and I was admitted and immediately started on IV antibiotics. The PICC was pulled and then began the frustrations with peripheral IVs and blood sticks- my veins are all shot! I was on my normal regular floor with all my favorite nurses like always, but the next day I got up to go to the bathroom and then (I don’t have any recollection of this at all) proceeded to have a full-blown grand mal seizure- a first, for me. It took about fifteen minutes for me to be coherent, talking, and responding to voices, and although I got a nice large lump on my head and did a number on my tongue in addition to shaking my Mom up quite a bit, nothing serious came out of it and the CT, MRI, and EEG all didn’t show anything- thank goodness I was lucky! We aren’t sure of the cause, though the pain medicine is the most likely even though I’ve had it many, many times, but as long as it doesn’t happen again we’ll continue to watch and wait, though it did get me a transfer up to telemetry and I’m not allowed to drive for six months.
Every day of that hospitalization it seemed like something happened so I couldn’t get my line back- first one of the cultures grew, but was supposedly a contaminant, then my fever went back up, and then the site where the last line was pulled became very swollen, red, and warm. One Doppler ultrasound later where even I could see something wrong we found out I had a DVT- Deep Vein Thrombosis (fancy word for a blood clot) in my arm and earned myself three months on blood thinners- daily Coumadin pills and twice-daily subcutaneous Lovenox injections for the first week and then one or the other, depending if I’m on TPN or not. There were a lot of precautions I had to be aware of in regards to bleeding and a delicate balance of meds that required weekly labs to check my INR level, which measures clotting factors. After a ridiculous amount of peripheral IV and blood sticks with no success and a terrible amount of frustration I had my sixth PICC placed and couldn’t have been happier to have IV access again. I was on fluids every night for awhile after being discharged so I wouldn’t get dehydrated which in turn aggravates my pancreas and gets that vicious cycle going, but then I had my line pulled because of the risk of infection- I was so lucky before that the sepsis was caught before it damaged any organs so we don’t want to take any chances.
I was finally weaned off the Lasix, then Diamox, and finally Prednisone, but only a couple weeks later the headaches returned with a vengeance and we had no choice but to go back to the Diamox and then Lasix, which began the whole diuretics vs. pancreatitis war again- seriously, doctors would come into my room at the hospital and simply say “this is a mess.” We really tried to ride that episode out at home with fluids and med alterations, but it got to the point that Dr. U took one look at me and said “You look like crud- you need to be in the hospital.” I’d had a PICC (my 7th, which took 3 tries to get in when I never had a single problem with all my others) placed the day before that for fluids at home so thankfully I had no IV access problems the entire week I was inpatient (big relief). Dr. U was on that week and didn’t mess around so we started TPN right away since we knew exactly what we were dealing with- just like before- the pancreas v. pseudotumor never-ending battle. I went home on TPN and fluids again and the plan was to continue the fluids until I’m off the diuretics for good so we don’t go around this vicious cycle again- we’re all tired of it!
As the new year began the headaches persisted along with the addition of incredibly annoying and bothersome “pulsating intracranial noises” that I continue to hear every minute of every day. These symptoms are now more of an issue than ever so we continue to see my neuro-ophthalmologist weekly to keep on top of everything- same goes for Dr. U/GI. We had hoped the medicines and optic nerve sheath decompression surgeries would be enough to treat the Pseudotumor so we wouldn’t reach this point, but since I’m continuing to have bad headaches and pressure problems it’s become clear that we must do more. After a stat MRV, a cerebral angiogram was the most important next step to see the venous structures of my brain. That took place on the first day of February and showed definite narrowing in the vessels leading up to my brain and very high pressures where there shouldn’t be, which pretty much left us with two surgical options: a stent or shunt. Now that I’ve finished my three months of blood thinners for the DVT (the first week of February) we have much more freedom to do any tests/procedures/surgeries without the risk of bleeding.
We met with my neurosurgeon on Valentine’s Day and are very confident with him. He has had good results with a new stenting procedure to treat the narrowing/stenosis, which is much more serious than I had originally realized. He was very thorough and explained everything really well- it’s so crazy how much is unknown about pseudotumor and what causes it. As he questioned me about my symptoms it was frighteningly like he was reading my mind- everything fits perfectly to the diagnosis, which is actually a very good thing even though it’s painful for me. We will know if the stent has worked (meaning it opened up the narrowing so blood and fluid can flow without any problems) very soon after the surgery as there is a chance that is won’t, where we would then have to shunt. I’ll be on the blood thinner Plavix for a few days before and six months after the surgery as well as Aspirin for life. During the surgery I’ll be under general anesthesia and will go to ICU post-op, but hopefully the hospital stay will be short with no complications. The surgery was originally planned for March 9th but unfortunately was moved to April 6th which was frustrating because I really want to go back to school, but in the long run it’s for the best because we are reassured that this is THE surgeon to do this procedure and we don’t want to take any chances. I guess the most upsetting part of the wait is just that I’m so much looking forward to having some relief and ending this vicious cycle once and for all!
Because of the surgery delay that vicious cycle got to go around and around once again. Towards the end of February I was feeling pretty good from the GI side of things and after being the poster child for TPN for two months I decided I wanted to try and eat. As much as I love my purple infusion backpack I was so excited to be unattached during the day and did pretty well eating while also keeping the vicious cycle at bay with saline infusions every night to keep me from getting dehydrated. This worked well for a few weeks but unfortunately I had a bad pancreatitis flare-up which landed me in the hospital over Spring Break- my first inpatient stay of ’06. Of course it’s never fun to be back in the hospital but that was the longest I’ve been stable at home since I got sick so I’m pretty proud of that. We know the routine and I was immediately made NPO, started on lots of fluids, pain/nausea meds, potassium infusions, and TPN to get over the flare-up. There was a big concern about my PICC because it had been in since December and with my history of that bad infection it needed to come out. However, instead of getting another PICC I had a Mediport placed on March 14th in my right upper chest. It’s a much better long-term solution and is great because now I can do everything myself to get hooked up, as well as have a lot more freedom. One thing that came up while I was in the hospital was that I’ve been anemic for awhile (Dr. U always comments that my counts are good…for me) but we’re now at a point that the Anemia is becoming more of a concern, so we’ll be dealing with that in the near future. Like usual my pancreas calmed down within a matter of days, we got everything set up to go home on my 24-hour TPN and fluids overnight, and we then got our walking papers.
I was absolutely thrilled to get home to find my acceptance letter to TCU’s Nursing School- I was honestly speechless! Unfortunately the next morning I woke up feeling just absolutely terrible and after seeing Dr. U (remember he can read me like no other) he could tell something was wrong and called ahead as we drove over to the ER with concern of an infection (remember my history). Luckily everyone there is awesome and knows me so it wasn’t bad at all- they did cultures on every bodily fluid, immediately started antibiotics, and admitted me again- really this whole coming to the ER right after being discharged is getting old very quickly! I lucked out having my favorite nurses and docs and I can’t complain at all about being there for a couple days because we’d much rather be safe than sorry after that scary staph last year- the conclusion was that I had a virus (most likely nosocomial) and the beginnings of a bacterial something that was obliterated very early by the vancomycin- yay for clear cultures! We are really glad I did end up in the hospital or we wouldn’t have caught my potassium nosedive that necessitated a super important TPN formula change. If we hadn’t gotten that change it would have left me with a critical lab number and feeling super sick, so it turned out to be a good thing we ended up back there.
Unfortunately just two weeks later on April Fool’s Day I spiked a super high fever and in just a matter of hours went from having seemingly annoying mouthsores to dangerously sick, which resulted in an ER trip at four in the morning where it quickly became apparent that this time I wouldn’t luck out with clear cultures. In fact I had a very serious bloodstream infection/line sepsis (Group B Strep). I was admitted and immediately started on IV antibiotics, and after just three weeks after it was put in my port had to come out, which was really upsetting, especially since we later found out it didn’t grow cultures (I’m still peeved about this). It was also disappointing to find out that the infection was serious enough that is caused a drop in my platelets which would have made the neurosurgery very dangerous so it’s been postponed… again. It took a few days for my temperature to finally go down and for me to stop radiating heat and for the antibiotics to work so the cultures were clear which meant I was inpatient for a week, though much of that I don’t have much recollection of. Because of the severity of the sepsis and my history it will take awhile for me to bounce back from it completely, but I will with time. Another PICC (#8) was placed (with great difficulty- my veins are completely shot) when my port was removed since I’m on TPN and IV fluids every day, plus for the infection I was on IV antibiotics (Penicillin-G) for two weeks. We were pretty much waiting on the edge of our seats for the new date of the much-anticipated surgery and of course it was May 25th, the day before graduation- that wouldn’t work! So it’s been moved to June 8th. After I finished the antibiotics we waited a week to make sure no fevers were going to come and then I got my port back on May 1. The weekend before we had a scare of an infection that ended me up in the ER and in the hospital overnight but thankfully it was a virus and cultures were clear so I got my port with no problems- same (great) surgeon as before… but this one is going to stay in as long as I need it! After that our main concentration was to keep me at baseline until the surgery.
Unfortunately that didn’t last long and I faced another set-back. I was feeling pretty good but just a week and a half after my port surgery I woke up to study for a final exam but just didn’t feel right- more nauseous, chills, just weird. So I took my temp and was quite surprised when it was a little below 103*. Not long after it went above that mark and as much as I really didn’t want to go, we knew where we were headed: to the ER for a definite admit. Of course we know everyone so it was a pretty smooth time in the ER and they did cultures and then had a very unfortunate lumbar puncture experience, but we did check my pressure and it was still high, though improved from my original Pseudotumor diagnosis because I’m on treatment. Originally my (awesome) resident told us all four cultures had grown in less than 24 hours- a very bad and very rare thing. We found out later from my ID doc that they were done wrong so we really don’t know the exact infection, though it’s definitely staph. I was immediately put on two high-dose antibiotics and slowly improved. The best part of all is that we were able to salvage my port and my ID doc is determined to do so for awhile! I wasn’t able to get my oral meds down without throwing up so my pancreas and head got out of control, but thankfully things improved. However, I was put on Vancomycin (super strong IV antibiotics) for three weeks- until the last day of May, which caused numerous problems with my GI tract and other stuff as well. These infections are so serious and everyone is really concerned about me being high-risk for surgery and also the fact that with each infection it’s harder and harder to beat it, so let’s hope this is the last one! They are NO fun!
I was very hopeful that there wouldn’t be any problems until the surgery- I would finish the antibiotics, have one week, and then surgery. My body had other plans. On the night of graduation we first realized I was having 100-101 fevers, while I was still on antibiotics. That continued for the next few days and I was SO tired, which while we thought I’d just overdone it with friends and family over, but this was a bit extreme. At my weekly appointment with Dr. U he walked in and, with his incredibly ability to read me, immediately realized I was paler than usual, which takes a lot. Once he heard about the fevers there was no question that I had to be admitted- we had to figure out what was wrong and fix it so I can have the much-anticipated surgery. So I was admitted and they did all sorts of cultures which were all negative, but remember I was still on antibiotics so that could have masked something. The next morning my blood counts were a big issue- I’ve been anemic for months, but at this time it had dropped to a dangerous level, which explains the extreme fatigue. Because of this I required my first blood transfusion, and I got two units. We quickly realized the problem is that TPN, which I’ve been on since December, doesn’t contain iron. Oral iron pills are notorious for making people sick and I simply can’t tolerate them, so I began thirteen days of IV iron infusions to get my counts back up. The other part of this admission, which I am still very unhappy about, was the removal of my second port. Because of the upcoming surgery if there was any remote chance of an infection on the line, it could spread to the stent, which would be incredibly bad, so while I understand why it had to come out, I miss it greatly. I had my 9th PICC put in as alternate access, which was super difficult and probably the last PICC I’ll be able to have, so we really hope the surgery works. Thankfully the port cultures were negative, but I’m still continuing on the Vancomycin until the day of surgery. That was about it for that admission- thankfully I never felt all that sick, and most importantly, the surgery wasn’t delayed.
I was finally ready for the surgery to happen and everything was going as planned. The day before pre-op a home nurse was over and thought my arm was swollen and she was adamant about having an ultrasound to check for a DVT- we were so incredibly scared, because if there was one, surgery would be cancelled for a minimum of three months. Thankfully we were able to get a stat Doppler and there was no clot. We proceeded to pre-op and then the day of surgery! Everything went well going in and we were confident with everyone and everything. However, things turned out WAY different than we’d imagined. I had a very in-depth angiogram through my neck and was fully out and everything for an involved surgery, but when my surgeon went in he found that the stenosis/narrowing was no longer there, so a stent wasn’t needed. This explained why some of my symptoms changed, and while it was great news, it left us at a “what now?” spot- my pressure was still high. We started weaning the diuretics but it was clear I still couldn’t see everything and the pressure was still an issue, so the next step was to see another neurosurgeon, because the original one moved to a different hospital. I was able to go to half-strength TPN but still 24 hours which was good news- I was on that for a few weeks and then was finally able to come off of TPN completely as long as I can eat and keep my nutritional status up. However, because I was still on an incredibly high dose of diuretics (at 14 pills a day at the highest dose) the IV fluids had to continue.
While all this was going on I was able to go to visit family up north for a week or so and spend the Fourth of July with them, and then went to the DYNA Summer Chill and met my best friends in person. While we were gone we got the call to see my new neurosurgeon and towards the end of July, after my vision got much worse and optic nerves were more swollen than ever, we met with him. Going in we pretty much knew what was coming- a VP shunt. This was latter of the original stent vs. shunt decision and really is a last resort treatment for Pseudotumor. We loved my surgeon and he was great at explaining the whole procedure (including the very bad haircut involved), but he was adamant to get it done before I had to leave for college and he was out of town so a few days later we met with his partner and my official neurosurgeon, Dr. W. They worked a small miracle and got me scheduled for VP shunt surgery on July 31- just a little over a week later which was amazing. All was well at pre-op other than my PICC decided to start leaking so it was a long day as we had to get that switched out and also see my neuro-ophthalmologist. Then we arrived at the hospital at 5:30am on the 31st with complete confidence in my doctors and the hospital and everything. It was decided to do the surgery stereotactically because people with pseudotumor have such small ventricles it’s very difficult to get the shunt in the right spot without it, so I had a frame bolted to my head in pre-op, then had a CT scan with that on before we went to the OR. I thought I was going to be more awake for the initial part of the operation before I was put under general anesthesia, but they gave me enough “IV margarita” (aka Versed) that I have no recollection of it (call me crazy but I wanted to be awake!) I woke up on the neurosurgery floor hours later with a lovely shaved part of my head, 21 staples, and three abdominal incisions- neurosurgery did the brain part and general surgery the other part. I had another CT after where they said the shunt was in the perfect spot- great news, thanks to my wonderful surgeon. Despite being in lots of pain from the surgery, I immediately noticed a change in my vision and headaches. I was in the hospital for four days to recover since my pancreas complicates things a bit, but the day after being discharged we saw Dr. M, my neuro-ophthalmologist, and we (meaning us AND him!) were beyond thrilled to learn that now I have 20/20 vision, an “awesome” visual field, and my optic nerves look NORMAL—which none of these had been anywhere near that just a week before. So as you can see, the surgery was definitely a success, which I’m absolutely thrilled about!
Since the shunt surgery my quality of life has improved drastically, and as I’m writing this in March of ’07, things are going really well. I was able to start college last fall and absolutely LOVE being a nursing major, even with crazy A&P! I was in the hospital during September and then again in October with pancreatitis flare-ups, which wasn’t fun but thankfully my professors have all been absolutely wonderful to work with. I successfully completed 13 hours and while it certainly wasn’t easy, I am so proud of myself for making it through. I had a PICC line for all of fall semester and continue to get IV fluids every night in addition to many oral meds that keep me stable and I’m down to just 1-2 Diamox a day, when before the shunt surgery I was up to 12, and hopefully we’ll be able to wean it even more in the coming months. In December after finals were over I had a new port placed by a really awesome surgeon Dr. B and got rid of that PICC, which I was very happy about. I started my spring semester in January and love it as well. Ever since my port was placed it moved around a lot and nurses had trouble accessing it, and finally it got to the point where my home nurse who gets it on the first try every time couldn’t get it accessed, so at the end of February I had surgery to switch out the ports and put in a bigger one. Thankfully Dr. B was able to do it over a wire so it was super easy, quick, and almost completely painless. This new one is great so far and hopefully will stay that way. I had really been doing well for a long time, in fact 6 months passed from the last time I was admitted to the hospital for pancreatitis, but on the first of March things went downhill and Dr. U admitted me for a few days to get things back on track. Now I’m just doing all I can to stay as well as possible while thoroughly enjoying school and everything about life. So while all this medical stuff has been frustrating at times and we wonder how many times we’ll ask “what now?” it all comes down to the fact that no matter what, everything happens for a reason.
Even though my different conditions are confusing and it gets complicated with everything together, having fantastic doctors, incredible nurses, and a great medical center that we are fully confident in makes all the difference in the world. November 28th 2006 was my 2 year ‘anniversary’ of getting sick, and to be honest it was quite surreal- it’s just crazy to think that I’ve been sick for this long, even though many great things have come out of it in addition to the hard parts. I’ve met so many wonderful people I never would have if it wasn’t for all this, have gained a whole new perspective of life, and am so much more thankful for the little things, which I’m so very grateful for. Well hopefully the end is in sight of all these weird different random set-backs and we can start moving forward and not look back! Thanks for joining me on this crazy medical rollercoaster- I can’t tell you how much I appreciate your support!
January 21 - my 17th birthday at Medical City… if I only knew what was yet to come!
January 25 - In the air ambulance on our way up to the Mayo Clinic in Rochester, MN!
June 28 - While Mom and I greatly advanced our nursing skills with a month of 24/7 antibiotics for the serious bloodstream staph infection, we are psyched to be infusing the last bag of IV Nafcillan!
June 29 - Beyond thrilled to be PICC-free for the first time in ‘05!
September 7 - Post-op from Optic Nerve Sheath Decompression #1- “ay ay, matey!”
September 15 – The latest big fashion trend (you just wait- it’ll be hitting the runways soon!): the home TPN bag and Purple Power PICC (say that 5 times fast!)
October 14 - My Senior Homecoming! Mum, overalls, PICC, and all!
November 21 - Me and Sarina at CHOP when we met for the first time face-to-face… one of the most exciting moments ever!
December 15 - Ready to go home! With all the stuff I bring when I’m inpatient and my awesome Christmas balloons!
My 18th Birthday - thrilled to be HOME this year! With all of my wonderful presents, cards, flowers, balloons, everything! Thanks so much for making it such a great day!
February 16 - Hopefully my last bag of TPN for a loooong while! But I still get to use my awesome purple backpack (that’s very reflective!) for my saline infusions!
March 14 - Absolutely thrilled with my acceptance letter to Nursing School!! You can’t tell, but I just got home from the hospital and also had my port put in the day before!
April 6 – Holding my new buddy Blondie who came from California with lots of Tara hugs! I’m in the hospital for line sepsis which resulted in the removal of my port after having it for only three weeks. Thankfully at this point the antibiotics had started working after a very scary first few days!
May 13 – Studying for final exams while in the hospital for yet another nasty line infection. Though we thankfully salvaged my port this time! I didn’t feel great but was determined to study!
Graduation was truly an incredible day. It was a sheer rush of exhilaration and everything came together to make for the most perfect day. (There’s a special graduation update in the history, but it’s a few days out of order after the actual day).
See the first update on August 18 (you have to click on the “view older journal entries” once) for understandable explanations of most of my different medical conditions, the symptoms I experience, what to expect from them, how they affect me, and lots of other info. And for the explanation of my P.O.D. (Picture of the Day) that I have on each update, read the entry on February 17, 2006. Check it out!
My family with full support for DYNA!
The best resource for information about pancreatitis and all it involves, including an article by my very own Dr. U!
”You’re a true inspiration and if I had to choose an All-Star team of Club-Med-ers, you would be in my starting line-up for your kindness, determination, perseverance, and your giving personality.”
-Tara
 
But You "LOOK" Good!
The wrong thing to say to someone with a chronic illness.
This is the greatest way to explain what living with a chronic illness is like, and especially, what it's like to deal with non-sufferers that just don't quite understand. I would highly recommend and request you to read this- it's great and written so well.
http://www.myida.org/lookgood.htm
In honor of my Aunt Peg... a survivor.
Visit the links page on Asher and Angel Jacob’s page to visit many kids in need of thoughts and prayers!
Me and Elmer who has traveled the hospital world with me (yes those are my hospital ID bands on him!) Given to me by one of my favorite nurses Christy at one of my first inpatient stays and named by one of the many paramedics! In Sarina's words, he's my confidante- that's for sure! He goes where I go!
Thanks so much for stopping by- please leave me a note in the guestbook so I know you visited! And if you have a CB page make sure you leave the link so I can come say hi!
Hope you have a great day and come back soon!
Journal
Tuesday, July 31, 2007 First and foremost, I greatly apologize for my incredible lack of updating – I am so very sorry! Thankfully it’s been because I’ve been busy with lots of great things, so the cliché is true: no news is good news! But I couldn’t let this day go by without making a post, and also a special announcement. Anyway, if you aren’t a longtime follower and don’t know the significance of this date, one year ago today my life drastically changed for the better when I had much-anticipated VP shunt surgery. It’s absolutely incredible to look back to where I was then and then to see where I am now… and not just by my hair! I owe this wonderful year of college to the success of the shunt, as well as an overall amazing improvement in my quality of life. In a perfect world I’d be off all pseudotumor meds by this point, which I’m not, but I honestly don’t care – I am thriving and couldn’t be happier! Though I’m still dealing with some headaches and associated issues I am 110% better than where I was July 31 last year, and I can’t even begin to tell you how great it is to be able to say that! See for yourself:
As I reflect on the weeks and months since I was shunt-ed I’m amazed by how much I’ve changed and matured. Of course college does that to anyone, but it really has been an incredible year full of so much growth in so many areas. It’s hard to believe that my dream of becoming a nurse is truly within my grasp, and it just excites me to no end to think of all the possibilities that await me! Well I won’t get all mushy on you, so I’ll move on to the much-anticipated (or rather procrastinated!) recap of my summer - I can’t believe it’s almost August and therefore summer is almost over, but that’s a whole other topic! Now you know how I all love lists, so here’s the highlights of summer ’07, starting from the very beginning, with some photos thrown in because, well, I love pictures!
• Spring semester ended very successfully in the beginning of May – in fact we recently found out I made the Dean’s list
• In May my family joined together in D.C. to celebrate my brother’s college graduation and Commisioning – a very exciting (and busy!) trip. I’m one proud little sister!
• I enjoyed a couple weeks of pure nothingness… sleeping in, watching DVDs, scrapbooking, apartment shopping… all that good stuff! I was able to attend my beloved dance studio’s recital with fellow Fab 5-er Ruthie which was a lot of fun and quite nostalgic
• In the beginning of June I began my first summer semester of classes, which lasted for five weeks. I took World Religion and Theatre History and they went well, though it was pretty weird being on campus without everyone – just a very different culture, making it kind of surreal.
• I commuted back and forth the first week and then moved into an on-campus apartment for the remainder of the time which worked out really well
• It was a very sad day when I had my last appointment with our beloved Dr. U. I still feel a bit lost without him as we face the dreaded new doctor search, but I’m quite excited for him as well as he embarks on a new part of his life. We will certainly keep in touch! Later in July I saw my new GI for the first time (Dr. L) who I had seen while inpatient at times.
• June 16th marked a very special day – I donated ten inches of my hair to Locks of Love! I’d been planning to do this for a long time and finally got up the nerve! I absolutely love having it short and it’s quite amazing how it blends the short part from the shunt surgery
• I finished the first five week session of classes the first week of July and my brother also came to visit which was fun as always. I had one weekend free before starting the second five week session which I’m currently enrolled in. I’m taking a very interesting upper-division English class on women in medicine in the 19th century that is entirely online – technology amazes me!
• I spent the second half of July up north visiting friends and family, which I thoroughly enjoyed every minute of. We went to the shore which is just such a magical place for my family – we hung out on the beach (and I was able to go in the water this year as we de-accessed my port!), cruised the boardwalk numerous times, and just enjoyed being together.
• During my vacation I spent a few days with Sarina and her family, which included visits with Hayley – these are two amazing girls whose friendship I cherish so very much! Also included were numerous outings to lunch with my aunt and cousins, game-playing (my brother and I owned pinochle!), visiting my Nana, and a few trips to random places!
• And of course spread throughout all this time were numerous visits to visit with good friends, babysitting two adorable girls of a close family friend, going to lunch with my Mom and her friends, scrapbooking, seeing movies (I admit it was raunchy, but I loved Knocked Up!), talking on the phone for hours with friends, and all the other things that I love to do! I’ve also been watching the seasons of Gilmore Girls which I absolutely love – I never was able to watch it while it was on so it’s a real treat… not that I don’t love my Grey’s, but it’s nice to watch something I haven’t seen one million times!
I suppose I should do a brief medical update as well, considering that IS the reason for this page afterall! As I’m sure you gathered from my opening paragraphs, things are going remarkably well, especially taking into consideration where I’ve come from. Granted it still takes both hands and toes to count my meds, but *knock on wood* I think we’ve reached a point of stability, of which I’m so very grateful. I continue to get IV fluids with potassium every night through my port which I owe a lot of my well-being too, as it makes a world of difference. From a pseudotumor standpoint things are going okay – like I mentioned I’m still on diuretics, and unfortunately a fairly high dose. This is because I’m still on steroids for the increased protein in my CSF, and we can’t lower the Diamox until I’m off the Prednisone. However, I’ve gone down a lot on the dosage of prednisone (though you wouldn’t know it judging by my chipmunk cheeks!), and will hopefully continue to do so. I see Dr. McH this week so I’m hoping for good news – I want to decrease these meds before school starts as excessive sleepiness is still a big issue. It’s one thing to deal with when I’m taking one online class, though it is reading-intensive, but I just can’t be falling asleep like I have been taking 15 hours of rigorous classes. But if that’s my biggest problem I’d say I’m doing pretty darned well! The pancreatitis is hanging tight – Dr. U put the finishing touches on his med cocktail before he left and it’s working really well… let’s hope that continues and I can keep on with this stretch of no hospital stays and minimal doctor appointments – I’m loving it! Well I think that’s about it for that!
And now for my special announcement (ha! I make it sound all important!) After much thought and contemplation, I’ve decided to close this CaringBridge page… but no fear, I’m just moving! I wouldn’t leave you all hanging! I’ve decided that I want to begin a new phase of living with a chronic illness that doesn’t involve all the many weeks and months in the beginning that were so very tough. Not that they aren’t important to my story, because no doubt that they certainly are, but I feel that now that I’m one year out from having a shunt and thriving I’ll update from a different place. A fresh start I guess you could say! It baffles my mind that this site has had almost 186,000 visits… WOW. When I started it back in January of ’05 it was to update close friends and family on what was the latest while I was at Mayo, and look where it has come in the 917 days since then. CaringBridge has brought so much good to my life and I am forever thankful for it, and most importantly, for YOU. For checking in on me, supporting me, cheering me on, and picking me up when I’m down. It means the world to me that you care, and I hope you’ll make this leap with me as I take life on from a different perspective. There’s not a whole lot on my new site yet but I’m working on it so check back frequently. It’s set up differently but I’m sure you’ve seen many others like it or if not you’ll catch on quickly, and it has the really cool feature that it will email you when I update (I love this and won’t admit how many people I have update notifications for! It’s so convenient and you avoid the disappointment of getting to a page and seeing no new update). My goal is to update over there once a week, probably Sundays… I figure I’ll remember it by doing it when I get my oral meds all ready for the week, since that I can’t put off. Of course I won’t make any promises but will certainly put in a good effort! So without any further ado, I offer you this link: www.caringbridge.org/visit/dianaleigh. I will keep up this website for awhile until everyone gets the link switched over, and will always keep the history of it as it’s very important to me. Thanks so much for making the switch – I hope you like my new look!
Alright well I think that’s about it for now! I just know the next few weeks are going to FLY by and I will be back at school in no time. I won’t lie, I’m SUCH a nerd when it comes to back-to-school stuff: to say I have a fetish is the understatement of the century. Haha I’ve had my notebooks for weeks already, if that says anything! It’s just so much fun to me and I’m looking forward to this year SO much – clinicals here I come! I didn’t realize how much I’d miss the whole “college life” but I really do – I can’t wait to get back and see everyone, and I’m even looking forward to studying! I’ll write more about the upcoming semester on my new site, but basically I have two weeks left of this online English class then a short break before everything starts – yay! Well I hope you enjoyed the long-awaited update and I’ll see you over on my new page! Please keep all the CB kids and families in your thoughts as many are facing difficult decisions, treatments, and all that right now. As always, thanks for checking in on me and have a great day! xoxo
Read Journal History
Hospital Information: 
Links: http://laurathevicar.blogspot.com
A great list of CB kids, families, and angels that is updated frequently.
http://members.shaw.ca/bananabin/links.htm
Julianna Banana's Monster Links Page!
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