ellipses

I hope she had peace.

I hope when she was waiting to go back, there was calm… none of the fear left from not knowing what to expect, of lacking the experience… simple calm and acceptance, a blip on the radar.

I hope she never felt alone. That her nurse that day was one of the good ones, the ones who let you know they genuinely care, even if they are running on empty. That she had someone to sit with before she went down, to hug and snuggle up to, to gently comb through her hair and whisper reassurances, whisper pieces of love… to send her off with a kiss, a seal of security.

I hope she never felt like a number. That her techs, nurses, doctors, all saw her for the person she was, good day or bad. That her nurses took the time to know her, to see who she was aside the vitals, pallor, and diagnosis… that the OR staff took the time to make her comfortable, to tease and love to lighten and warm the stark room and cold, sterile air. That someone took the time to hold her hand and tell silly stories as the anesthetics took over, her last feeling of connection.

I hope when things started going the wrong way, she was comfortable, that she was spared the tension and alarms. That any consciousness regained did not enlighten her to what was really happening… that there was still some calm in the drowsiness, that she wasn’t aware of the decision to move to ICU, that someone did what they could to squelch the pain and the fear.

I hope the staff remembered who they were dealing with as the problems began to increase and potential for recovery crept downwards… that they remembered she was only 21, a fighter tired from the constant battles, all but a child who, if awake, could be riddled with fear. I hope they allowed her husband, her love, to truly be with her as much as they possibly could, and that in his absence there was someone there to help her feel safe. I hope that amidst rushing and panic, they found a way to keep their words gentle and touch soft.

I hope they never, never, never gave up on her, that they could feel her fight shining through the fatigue. That in spite of the diagnosis, the deterioration, the hospice care, the prognosis… that they knew it wasn’t her time yet either.

More than anything, I hope and believe, I have to believe, that the last she knew of this world was love from her other half and warmth.

I just have to hope and know that despite spontaneity and panic, she had peace with the universe, despite how absolutely horribly and unfairly it treated her….

Because if she had peace, maybe someday I will too.

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For those of you who are not part of the online medical facebook community, this has been an especially rough week for those of us in the mitochondrial disease family. It is not a total abnormality for children, teens, and adults with it to pass away, it is a hellish disease that really makes staying ‘healthy’ in general a major challenge… but the last week or two, its felt like rapid fire, not even giving us a chance to breathe before another set of green candles are lit. Each of these make my heart ache, truly. While some are expected, the finale of a very long and exhausting battle… others come from absolutely nowhere. None of these children deserve either fate, nor their parents and families… so we share our condolences, offer virtual hugs and shoulders to cry on, regrouping and hugging our family (online and in person) a little closer. But with these, there has always been a space for me. Yes, I feel horrible and sick to my stomach, but it still feels like a story.

This time was different.

We weren’t extremely close, but we were friends. She lived a state away from me, only about a 4 hour drive. We tried to plan a time to meet up in person, even talked about trying to go see Macklemore in Denver, but it never quite worked out. Mostly we talked medical, trying to find specialists who had even a remote sense of what we were dealing with, my sharing experiences and advice, offering support in whatever way I could. I have always enjoyed her dry but genuine view of the world and a sense of humor like my own.

The days before, I was definitely concerned… not to that level, but youll see. Christmas day, flipping through facebook as I tend to do while in the hospital, I saw what I guess is now the beginning. I wish, wish, wish her doctors could have been more of an accurate resource for her. Who knows where we would be if they had been competent. She had posted asking for ways to lower a fever… for those of you who do not have experience with central lines, a fever is nothing to joke with. Even a slight fever can turn bad, fast, due to the risk of getting a septic blood infection (central lines are basically a freeway from the outside to your blood stream… bad combination). Most doctors will give you a fever protocol, a set of rules to follow to take out any guess work… for example, I am admitted any time I hit 100.4, or even a bit lower (since my body is off). She was never given any rules like this. When I saw what she said her temp was, I pushed and pushed for her to go in. Were both a little stubborn too.

I kind of lost track of everything for a while after that, just sent a message wishing her luck, pain relief, and offering to help or explain anything I could…. A few hours later, I heard back, she asked for a description of the whole line infection process, what she should expect… and then the last words I ever heard from her. “how long until im better?”

Im sure neither of us knew the weight of that question, but now it feels like something that will never stop haunting me.

This wasn’t her time. The surgery was simple, one I have had more time than I can count in the last year alone. Not expected. Not thought to be a big enough risk to postpone or change the surgery. But that was it. That was her last sentence.

Im trying to be okay, but I don’t think I will be able to go under for my next surgery or procedure with the same level of comfort as I have had for so long. Part of me will always ache, for her, for her family, for her husband…

rest well, Melissa. 

‘wake up your eyes, and darling your smile… the day is done, everyones gone now. you can taste every fire and hold every song. the world has moved, be quick enough to not miss it now… so wake up your eyes and darling your smile’

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New Year, Trial 3

Hey, anyone who might be reading this. As usual I lost track of myself and have not posted in forever… I always forget how important writing is to me until something big hits again to remind me. Lucky for my OCD-esque needs, its tied pretty closely to another new year, so in the next weeks Im going to try to re organize and fix up this thing, and am hoping to start working through this last year of mine, as well of course as whats happening now. So excuse the dust and pardon my time getting everything reset. Once I can find a computer to open word, Ill be putting something up, but that might be the only new for a little bit.

 

thank you for waiting for me.

‘hold on to me as you go, as we roll down this unfamiliar road, and as this wave is stringing us along, just know youre not alone’

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Facing Reality

My nonexistant readers… at least I consistently neglect you… right? That counts for something I think.

Since last post, I managed to get myself another line infection. I knew I was in trouble after my week of exams… I spread myself way too thin trying to get everything made up, and then worked a comp. I had hoped the weekend would let me recoup and get on with my life, but its not always that easy. I felt pretty crappy that whole weekend, and was not feeling right at the beginning of the week either. Wednesday I started to feel more off than usual, and thats when my temp started rising. Conveniently, the next afternoon was my Ornithology lab final. I watched my temp but kept studying. Thursday morning was bad. I got myself together enough to go to my test though, running a temp in the 99.9-100.3 range… high for me. Happy to report I still got a pretty good grade :). Anyway. That night my temp got up to 101.5, which is about a full degree above the range I am supposed to get admitted for. Made the trek down to Fort Collins and spent a few hours in the ER. Becuase my temp wasnt too bad once I got down there (that always happens), they discussed letting me go home and watching my cultures. My heart rate was being annoying though… chilled in the 130 range while I was laying down with a low BP, and they couldnt get it to drop. One of the initial signs of bacteremia, apparently. So they carted me up to my room and I settled in. Lo and behold, the cultures grew. The next night I spiked a fever. Good thing I went in. Went through the whole process and was finally relseased late Tuesday night. I was very lucky this trip though… I had two eos friends visit! It was pretty great to be able to talk to people besides my nurses… and it was great to meet some of my ‘online friends’ in real life.

Hmm… other health stuff… They decided to let me keep my line for now, but we will have a serious discussion if the vanco doesnt clear it on repeat cultures next week. I also got to add some foods back recently… that backfired. Im reacting to something, but I dont know what. Dr. P decided I should go back to no food til my symptoms clear. Lame. So after taking the end of last week to recover, I finally made it back to classes this morning… where I had a few realizations. First, if I dont make it to class, no matter how much I love the material and know it, I cannot get as good of grades as I want… even if its just a exam based class. This is pretty frustrating. Youd think after high school, I would be used to it. I guess I had hoped college would be my fresh start… that Id finally have grades to match my ability. This is where the second one comes in. I need to be okay with the fact that it may never happen. I wont stop challenging myself, and you bet Ill learn the material, but it wont always be by the time I have to take the exam. I might not ever have good class attendance. Thats just how it is. I will try my best, but my willpower can only push me so far. I cant beat myself up over that. Thats what gets me sometimes. When I start brewing big ideas like I all too often tend to do, its pretty frustrating to have to stop and think: but can I actually do that?

The reality of the situation is that I still want more from my days than I am physically able to do. The question becomes: do I accept it or fight it? I want to go to school everyday with a large class load, climb after, and still have the energy to wake up the next morning. Even just make it through a full day of classes without getting more sick. Is that really too much to ask?
I mean, I guess I should know thats just how it is. Its not like it was much better in high school, ask the administration… my attendance was less than stellar. I wasnt so dead though. Or at least it didnt feel that way.

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Stepping back. Most of you, nonexistant people, are probably familiar with the feeding tube diet craziness. For those of you who dont, Ill give a quick recap. Theres a doctor in Florida who is helping women drop 10-20 pounds by inserting an NG (nasogatric) feeding tube and keeping them on a continuous feed of minimal calories for 10 days. There has been some outrage in the feeding tube community, for a number of reasons. As a 19 year old girl with a tube, I thought I would share the reasons this frustrates me, as people have asked me many times.
I dont have a problem with this story being reported. It was ridiculous and that seems to be most of what the news is now a days. What does bother me is that there is no mention of the real uses for feeding tubes, really. Having feeding tubes, especially nasal feeding tubes, nationally publicized as a crazy weight loss fad only helps perpetuate a negative stigma of feeding tubes… especially in young adult women like myself. I had a difficult enough time walking around a college campus with my NG tube, and that was a year ago. I cant imagine how many more stares, snickers, and comments I would have gotten if my peers had seen a video on those tubes being used for weight loss.
Another major part of it is that there are many families I know who have had to fight their doctors to get their child, or themselves, a tube… and thats when its medically necessary! Now that this ridiculous option  has been aired, I can only imagine that people are going to wind up having to fight their doctors even more.
Then there is the flip side… the outrage within the tube community has possibly swung too far in the other direction. Yes its important for people to know that feeding tubes are a medically necessary, less than desirable intervention, but all the tube horror stories do not help our case either. Yes, I wish I didnt have to have a feeding tube, but really? I love that I have it. Given my situation, it is something that helps me, not something that I am forced to suffer through having. I have had a few people message me, freaked out at the possibility of having to get a tube placed, given all the traumatic experiences that have been shared. I dont think we should be trying to scare people away from tubes… its important to use this opportunity to get positive attention for their use, when necessary, and the very positive impact they have for so many people. And hey, I think I looked pretty good with my NG tube.

Ill end my rantings there for today. Tomorrow, Im going down with my new eos friend to meet up with the Colorado Eos group. Its always nice to spend time with people who just get it. There are two weeks of school left. Im ready for summer. Im ready for rest, for warm weather, the APFED conference, climbing, being with my family, visiting friends… I hope this is a good one.

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“Life is not a problem to be solved, but a reality to be experienced.” -Kierkegaard

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Just another day

Ive neglected you again, my non-existant readers. I would apologize, but I dont know how much good that would do us!

Anyway. The obligatory medical updates.
Since last post, I went back to Cincinnati to see my doctor, get scopes, and have a permanent central line placed. It all went pretty well. We discussed the new diagnosis, talked about options and meds, and then figured out what we needed to do from there. I mentioned my continuing lower gut symptoms, but also made it clear I wanted to be able to eat a little, for fun. He thought that would be okay. Back when I was first seen at denver, my scope was actually pretty good, so he thought I could go back to those foods, as I could tolerate, assuming my scope was okay.
The central line placement went fine. I had a good time talking to my surgeon, who is an adventure athlete herself. She is more a mountaineer though (which I think is totally BA). She made sure to place my line in a way that would let me climb without causing any damage. I really apprecaited that part. I also realized just how handy having a central line was when they didnt have to stab me multiple times trying to get an IV going!
The scopes went well too. Totally different group of docs back in the OR with me, and they were super goofy. Everyone back there always thinks Im nervous because my HR is pretty high, but they dont know it just does that normally, so they try to make me laugh and relax (with jokes and meds 🙂 ). The anesthesiologist was telling me that I needed to watch him as they gave me the meds, because he would turn in to Tom Cruise, and then said Dr. P would turn into Angelina Jolie. Dr. P was quick to say he was going to turn into Brad Pitt instead though. I really love when it is relaxed when I go back. If I had any worries, I didnt after talking with all of them.
I think part of it is that they like having older patients from time to time. They can be goofy and not worry about an upset little one.

As for the results. We are switching me from amitryptaline to lyrica in the hopes that it will not make my POTS flare so much. They added levocarnatine to my TPN, as well as 1L of saline, because I have difficulty getting liquid in. My esophagus looked pretty good, with only very mild inflammation (meaning more foods!), and the rest of my gut looked decent, except for a portion of my colon, where I have active colitis. I dont really understand the description, but it was somewhere between nonspecific and crohns, with increased eosinophils but not necessarily EC. This is one of those times I just nod my head and get my new perscription, which is Pentasa. I have yet to start it because it scares me. The pills are huge!

 

The rest of life? Im back to climbing, which just makes everything better. I have a ways to go to get my endurance and strength back, but I have a feeling it will be well worth the effort. Ive gotten in two gym sessions and even got a pitch of trad in the last week. Sadly, I have not made much progress on the not being a whimp with my gear placements thing. I sewed up Kim’s crack pretty good this afternoon. Im really going to do my best to get in a good mental state for climbing though. I need to realize that a fall isnt the worst thing, that not trying or giving up because I am scared is not how I want to climb, or live my life for that matter. I need to figure out what really is important, and start doing all the things I want to do, in case Im not able to forever.

As much as I know all of you want to read one of my philosophy ramblings, I think I will save the rest for another day. However, I hope all of you nonexistant readers are able to take time, as the weather is turning, to do something you love. It really can make all the difference.

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“I wanted water but Ill walk through the fire/ If this is what it takes to take me even higher/ Then Ill come through, like I do, when the world keeps testing me, testing me, testing me” John Mayer Trio

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Spinning

My non existant readers, this week has been pretty crazy.
BE FOREWARNED: Im tired and on pain meds. I think this will probably just be a rant about my stay this week. Nothing too insightful or exciting… but then again, you should expect that, coming from me.

My new class schedule started the week on a good note. I slept a long time and generally just relaxed. Tuesday morning, though, I knew something wasnt quite right. I made it through my first class, but then was about passed out waiting for the next one. After a long debate with myself, I decided to go home and sleep, and not push myself too far. So I did, and after getting a decent nights sleep (8 hours), slept from 10 til just about 3. I started the laziness over, because I was still exhausted. After being a bit productive, I went back to my computer. I rested my head on my hands, and felt the heat. Not a big deal, I thought. My hands are always freezing. So I sat on them a while, checked again… definitely hot. I went and grabbed my thermometer and checked. I averaged out around 99.8. High, but not too bad… except my normal range is in the mid 96s. I decided to wait it out and keep checking. 20 minutes later, I was up to 100.4. Thats when I told my awesome house mates I was probably going to need a ride to an ER, since my car is broken.
*(for those of you who lack experience with a central line… in my case, I have a PICC… fevers are bad as they can indicate a line infection. General protocol is 100.5 and up is straight to the ER to start antibiotics)
I told them to take their time, and Id wait just a bit longer to see if it would dip back down. Nope. 100.7 and I packed my bag. I slept most of the car ride down to Fort Collins. When we got there, I went back to be triaged while the boys played magic in the waiting room. My temp was a little lower by the time I was there, but not much, and the car had been pretty cold. I gave the nurse the note from Cinci about fevers and central lines, and she got the doctor. After the general run down and getting hooked up to a bag of fluids (oh the joys of CLs), they decided there was potential for a line infection, so they got blood cultures. For some reason, though, they have to get two sets, one from each arm. Right arm went like nothing. They used ol’ faithful and it was done quickly. Left was more of a problem. After ample searching, he found one on the top of my hand… the same spot that had failed about a month earlier. I warned him, but he tried it. No dice. Started searching again, but both arms. Only one they saw? Ol’ faithful. As it turns out the second stick to a freshly bruised/punctured vein hurts a hell of a lot more. They tried one other spot in my left arm, and when that failed, they went to talk to the ER doc. They decided to just pull that side from my picc (R.I.P.).
I got in to a room upstairs around 11:30, after a fun stretcher ride. They settled me in with some fluids and vancomyacin. This is when I became experienced in Red Man Syndrome. Joey looked pretty puzzled and kept telling me how red my face and neck were getting. Then my hands started itching. It was not very fun. Luckily benedryl helped, and now I have to premedicate before I start vanc. The next morning, I got to hear more of the game plan. They needed to put in another IV so that they would be able to both have me on TPN and run antibiotics (you cant mix those). This is how I met the IV team. Because they had such issues in the ER, the floor nurses werent even going to try. Minus their job, the team was pretty cool. On the downside, they hurt my arm pretty good. Because the IV was going to be for antibiotics, it needed to be a decent size, ruling out hand and wrist veins. Which left my forearms. If you know me, the one place in my body I have muscle is my forearms. I think that only made the attempts hurt even more. Anyway. That IV went in second go. Not too bad, considering the future attempts. I had to keep heat on it, though, to try to help it survive as long as possible. One of the antibiotics had phlebotic potential, while the other had a nasty low pH. Luckily that one lasted through the night and into the afternoon. That morning, though, they figured out that my blood cultures had grown… and they had to pull my picc, which was sad both because it only needed to last another 2 weeks and it meant I needed another peripheral IV in the dead arm. They searched long and hard, and after a few attempts, I got the second fore-arm IV. (needless to say, my patience for sticks was gone at this point. I can do one or two every so often, but after that I just get upset). They were operating together for a solid 4 hours or so. Then we started another round of antibiotics, and it hurt more than usual. When I looked, the first PIV site was black and blue, warm, and cordy. I made the mistake of telling my nurse, who called the IV team, who pulled that PIV. That was my first experience with phlebitis. Im not a fan.
Then we had the issue of trying to find another access so that I could get both antibiotics and some nourishment. This is when the heavy artillery came out. The IV nurse brought up both a vein finder and an ultrasound. After searching both- arms, she found 3 deep sticks. For the first, we just went for it. No dice. For the second, we used lidocaine shots first, to see if my freaking out less would help. Still no dice. The third and final attempt, she tried with a baby needle. Still nothing, so she quit. I still had the other PIV, so it wasnt that big of a deal. We planned on taking a break and having my new favorite IV guy come in when he got on work.
In the interim, we were going to use my second PIV to  get some meds and get the antibiotic back running. Apparently karma was against me, though, and we quickly figured out that IV was dead too, meaning IV team had to come back. I got a few hours off until my favorite IV guy came back. He used the vein finder and ultrasound and found one decent one that was fairly close to the surface… but in my elbow. He got it first go, and my arm got strapped to a board. It lasted me that night and the next day.
Friday afternoon, I got scheduled for a new picc placement. Given the amount of pain the last one caused, I was pretty nervous. I went down, and they got it in and dressed in maybe 10 minutes. It was awesome. Maybe the pain meds and ativan were helping me, but it was much less of a big deal. My new picc is purple too 😀 (its the little things).
After a final dose of vancomyacin I was cleared to go home. Im now on two weeks of iv antibiotics and have to take it easy for a bit. Luckily, we talked to cinci, and my central line placement surgery on the 13 is still a go. Im excited to get climbing again.

Through the whole thing, I was utterly exhausted. There was also lots of time to think about everything that has been happening. I hope my life doesnt turn into a slew of hospital stays. I know it was just this once…  but its still kind of scary to think about.

For now, Ill enjoy being home and will keep counting down til I can climb again.

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“Take it moment by moment, and you will find that we are all, as I’ve said before, bugs in amber.” – Vonnegut

 

 

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Finally

My non existant readers, I have some good news. I finally have an answer. 

If you have read my posts so far, you probably know of my frustrations figuring out what on earth was going on in my body. As I mentioned in my last post, I was recently seen back at Cincinatti Childrens Hospital Medical Center. It was a long visit, but productive. I had scopes, a GJ tube change, muscle biopsy, intestinal imaging, PICC line placement, and the start of TPN (total parenteral nutrition, for those of you lucky enough not to know… IV nutrition). My scope showed active eos (which was entirely expected), imaging was normal (ruling out a mechanical reason why I was not tolerating J feeds), and I finally have the results back from the muscle biopsy. 

Background. A muscle biopsy was ordered to test me for mitochondrial deficiencies. Dr. P is starting to see a trend of eos patients also having mito, or mitochondrial disease. My education from this week tells me that mitochondrial deficiencies point to mitochondrial disease, but most do not consider it a true diagnosis until gene testing is performed, along with ruling out any other causes for the deficiencies. Well, the muscle biopsy showed I am definitely deficient. They test by the different complexes within the mitochondria, each complex a different step in the process of processing and making energy. On the upside, my complex II and III looked perfect. On the down side, complex I was operating at 4% of normal, and complex IV was at 6%. Because I am not on any meds that could contribute, and it appears the test was accurate, Dr. P is assuming mito. I will find out more when I see him over spring break, and am guessing Ill be adding some more specialists to my team. 

Because of this, and the fact that I am still symptomatic on just about nothing (food wise), Dr. P also decided to delay the reintroduction of enteral (tube) feeds, and as per the original discussions about it, I will be getting a central line placed. After talking with the nurse, we decided that a tunneled line would be best, given its use for the meanwhile will be TPN. Whats super cool about this, though, is that Dr. P hand picked my surgeon because shes a climber herself! So she will be picking a spot that will be optimal for me to continue climbing. The down side (there seem to be a lot of these this post) is that Ill be spending another spring break getting surgery. But hopefully Ill be able to head down to Red River Gorge afterwards to visit with some awesome friends. 

The plan of action from there, according to my mom’s recount of her conversation with Dr. P is to manage my symptoms and keep me doing what I want to be doing for as long as possible. Theres just no gauruntee, timeline, expectation on how long that will be. Hopefully this is a battle I will win. 

I havent taken much time thinking about what all this entails yet. Its still just kind of hovering in my peripherals… Maybe tomorrow Ill be ready. 

Until then…

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“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’ No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.” – Dalia Lama XIV

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Starting Over

My non existant audience, I apologize again for my lack of posts. I have no excuses. I am just a bum.

Heres the medical updates. I finally got to Cinci. After a lot of discussion, we figured that I needed to get more nutrients.Scope confirmed that my GI tract is not happy with me eating food (suprise suprise), so I was given the weekend to get my J feed rates up to 60ml/hr continuously. Needless to say, that didnt happen. I went back down and had an abdominal CT to see if my original tube placement had caused torisons or adhesions on my intestines, causing the pain with feeds. It came up clear, so I was admitted to start TPN, which is less than idea. Im on that for a while. We are going to get me nourished and see what symptoms persist, hopefully getting back on enteral feeds. 
Thats the jist of it. Im pretty upset that I am back to no food, and that I can climb with the PICC line in, but Im trying to move past it in the hopes that it will wind up helping more than its sucking right now.

Ill write more later. Goodnight, my nonexistant readers.

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