Living with Gastroparesis

So, it has been a long time. Many things have happened. That is, in part, why I haven’t updated. I didn’t want to post about the new procedures I was going through until I knew if they were helping at all. I wanted to have some sense of closure. Not as though the closure meant I had finished treatment and no longer felt sick, but that I was stable. It has been only until now, where I feel I have reached that point again.

I apologize in advance, for the long post, but I wanted to get caught up so I can continue with updates more recent.

My gastroenterologist (GI) was at a loss when it came to managing my decreasing motility of my large intestine. I had to visit the ER at least once a week due to intolerable pain. The x-rays taken there, all showed the same picture and over time, my doctor was able to see everything over a large time frame. It was then that he realized the severity of my lack of intestinal motility. After we ran out of options he was able to offer, my GI went searching through his co-workers and found my new interventional radiologist (IR), Dr. Osnis. It was then that I was presented with the c-tube treatment plan. This is the first time I had ever heard of a c-tube, or a cecostomy tube, and I usually know quite a bit about all options for any digestive problem now that my motility and paralysis is progressing.

The other posts I have blogged here, show the detail in research I do in order to fully understand the concepts, procedures and the life I would live after starting/completing treatment. I stress the importance of almost obsessive compulsively researching when it comes to your health and illnesses/diseases. You must NEVER put all of your faith and trust into any healthcare professional. After all, they are people too and people make mistakes and they can’t be expected to know everything. Placing medical caretakers on some sort of pedestal can seriously compromise your health and be potentially fatal. An example of this will be given later. Yes, it happened to me very, very recently, through no fault of my own.

I think the last time we all talked was when I was in the middle of attempting to control my lower digestive system with a c-tube, or tube placed in my cecum. Wow, that was way back in August of 2012. So sorry it has been so long. Anyway, it is the same tube concept of a jejunostomy, just placed in a different area (the cecum; the first section of the large intestine). I had a long tube with a continuous drain placed first. As with all other tubes, the longer tube was placed first to establish a healthy tract built up of scar tissue. This assures that the tube, should it become dislodged or otherwise dysfunctional, can be easily replaced. It also helps reduce any pain that might be associated with manipulation or tube movement.

I agreed to the c-tube and had it placed through the standard outpatient procedure associated with any tube placement. At first, the long c-tube attached to a draining bag, was working really well. I was seeing results. The drainage bag was filling with air on a constant basis. This was precisely the purpose for which it was placed. But then, it didn’t seem to be working. I became afraid. I have been here before, the place where you know something is wrong but can’t produce evidence that would support your feeling. I made many visits back to my IR to have the tube checked and each time, it showed the tube to be functioning correctly. They pushed contrast through my tube that would show up on a special type of x-ray. I saw it myself. But when I’m home, nothing comes out of my tube. The draining bag was sutured open. The valve wasn’t broken. Why wasn’t it working?

I stopped getting relief that the tube was placed to offer. The tube my IR placed was only a 8.5FR (FR = French, a unit used to measure the size of tubes = How tubes are measured). I didn’t understand why the tube was so small. For as big as my distended colon was (10cm at the biggest!), I felt the tube should have been bigger. Once my tube site and internal tract healed and was strong enough to withstand a tube change, I requested my long tube be switched out for a low-profile tube as well as a larger tube. It took a few weeks for my tube that needed to be specially ordered, to be available for placement. I received a 16FR Mic-key button to replace my 14FR tube. I thought that with a shorter tube in length, on the inside, coupled with a bigger tube, I would find a constant and greater relief in my symptoms. This, I believe, is where I left everyone last time I blogged.

I began my routine from before, visiting the ER every week for abdominal pain. The x-rays looked just as bad as they did in the past. Throwing his arms up in the air out of frustration, my GI referred me to my new colorectal surgeon. This man is amazing. The best bedside manner I have ever experienced. He treats every patient like his own child. This has been said before about so many other physicians but in this case, it is the truth and best way to describe this man. He knew that if my GI, an extremely skilled and knowledgeable doctor, sent me to him that my GI had to be very desperate and concerned. Turns out, my new colorectal surgeon would be the right person to offer the right treatment. Looking back now, I could not be happier with the decision I made to agree to the proposed treatment/procedure.

When I saw my surgeon, Dr. Bastawrous, he told me that he would NEVER suggest a c-tube. He told me that a c-tube is by far the worst idea. I wish he was around when I was having the c-tube placed. I could have bypassed a lot of pain and a few surgeries. He didn’t know. In any case, he said that given all the x-ray images, symptoms and other illnesses, there was really, only one option left. An ileostomy.

There were two different types of ileostomies that we were considering and in the end, I decided to do what was less invasive. An open ileostomy. Exactly what this is, how it works and what different types of ileostomies are available will be discussed in a new section under experiences once I am able to get all the information collected. I think people forget to investigate all possible options when it comes to treatment. They are blind to those treatments that are least invasive. As you can see through my experiences and blogged entries, I started with the least invasive treatments from the very beginning, giving them a fair shot. First I started with simple diet changes. I moved from diet changes to medications to temporary feeding tubes to permanent feeding tubes to PICC lines to ports for TPN to c-tube to ileostomy. As much as the c-tube did not work, it was still worth my time to investigate and in some instances, try. Even the type of ileostomy I have isn’t exactly permanent. In some future situation where I begin to regain the ability to eat orally, my ileostomy can be reversed. While that isn’t likely to happen, taking out all of my large intestine is a huge shock to the body anyway. Leaving it in place makes sense and being able to reverse it is just a bonus.

Come October, I was taken in for an ileostomy surgery where my c-tube was also reversed during that time. My appendix along with the cecum of my large intestine was removed and the stoma for my ileostomy created. My large intestine was completely physically disconnected from any of my organs. Nothing was allowed to go through it. Everything was to come through my ileostomy. It was a very large shock to my life. I thought I was prepared through all the research I did and conversations I had with other patients that had already had an ileostomy done. But the truth is, you can’t be completely prepared for something that is to change your lifestyle forever. Usually the surgery puts you in the hospital for around 3 days. I had some complications that kept me there for over five. The pain was controlled and honestly, the pain wasn’t very high given the procedure that is done. You know, a large hole in your abdomen that is kept open with part of your small intestine pulled through. Yeah, things will hurt for awhile. Any surgery comes with pain. Sometimes you just have to knuckle-down and take it.

Thanks goes out to the many GP friends I met through Facebook, that came to visit me while inpatient for my ileostomy. Thanks go out to everyone who continue to offer encouraging words. You guys rock! I love you all! We must get together again. Preferably NOT in the hospital =)

Once the shock phase ended, I’ve been living with my open ileostomy since then. Like I said before, it was one of the best decisions I have made and that has been presented to me. That is, beside my port and TPN that saved my life and allowed me to get to an acceptable weight (with any illness or procedure, my weight drops back down into the red zone) and stable health. I haven’t had ANY complications, infections or pain in or around my stoma/ileostomy. Aside from a few leakage problems that were due to products that weren’t right for me, I’ve been living relatively comfortably. The products that I have found to be best for me, are the ones made by COLOPLAST. I’ve tried all of the HOLLISTER products (one-pieces and two pieces with their associated pastes and putty) with no success. All hospitals that I’ve been to have only offered Hollister products because they are not a financial burden (e.g. cheap). Once I got home, my HHC that is in charge of my ostomy orders, supplied me with Coloplast products.

I wear a two-piece system with a one-click bag that locks on to the wafer or backing. I required a specific setup because of the location of my ostomy site. I have that gastric neurostimulator still. The battery was recently replaced back in February 2013. The battery sticks out of my abdomen. You can see it and also feel it. I didn’t know for sure, if the ileostomy could even be done because of the location of the stoma and the location of my battery for the gastric neurostimulator. Somehow my surgeon, the amazing colorectal surgeon, was able to maneuver around my battery in order to safely perform the ileostomy. Even still, the stoma is very close to the location of my battery making any ostomy bag system difficult to stick to my skin and form a tight seal in order to prevent leakages. It took me a few months to figure out the right placement, the right wafer size and the use of other products to keep in what vents out of my ileostomy. Ever since then, I’ve not experienced any problems with my ileostomy (or anything associated with my ileostomy).

My ileostomy is doing what we all hoped it would; vent gas and material that would otherwise obstruct my large intestine until the pain was so intense I required an ER visit and at times, hospital stays. Random imaging studies confirmed the success of my ileostomy procedure. And for that, I’m grateful. One thing that keeps me out of the hospital is well worth it. The hospital can help me but sometimes, it can hurt me. With a weakened immune system and nurses who do not practice correct sterile practices when it comes to my central lines, hospitals can be dangerous. Even standard and simple outpatient procedures/surgeries have me needing observation in the hospital but I am sent home in order to not make me more ill.

Fast forwarding through the last months of the year 2012, we come to the end of January/beginning of February and I notice a dramatic increase in my level of nausea. A quick gastric neurostimulator interrogation showed the battery to be completely, 100% dead. My GI was just as shocked as I upon finding this information. It should have lasted a lot longer. My stimulator was set at the maximum settings, so we attributed the draining of my battery to be so quick. In order to get my stimulator back working again, I had to undergo an outpatient surgery to have the current battery switched out for a new one. My surgeon went through his original incision to place the battery and I was sent home the same day with very little discomfort and pain. Much like the first time I had the stimulator placed.

Pictures from my first surgery to place my gastric neurostimulator:

Not soon after my neurostimulator battery was replaced, I went back into severe septic shock. I ended up going to Evergreen Hospital through the ER. I had to go to Evergreen because it was the closest and didn’t require an ambulance ride to get there. Evergreen wasn’t my first choice of hospitals to stay in due to previous experiences in the ER, but I wouldn’t have survived a longer trip. As with all other situations involving sepsis and septic shock, I was very much unaware of how sick I really was and can’t remember what happened during the long hospital stay. I am always better off in the end, anyway. The seriousness that comes with sepsis is very real. You are in danger of not making it through another day. The ignorance you experience truly is bliss.

For those who have never been in such dire circumstances must know a few things:
1. Those who appear unconscious can in fact, hear you.
2. Those who appear unconscious also know when you are with them.
3. When those who are close to death do not feel pain.
4. Those who are close to death experience peace that cannot be achieved anywhere else on Earth.

I know these things to be true from when I have been in a situation where I was unconscious and close to death. I heard my doctors and family when they were around. I knew what they were saying about me even though I was unable to see them or communicate with them. I felt a sense of peace that made me unafraid of what might happen next. I was literally a breath away from death and it was in that moment, in that choice, where I had to decide my future. In my level of unconsciousness I heard my nurses ask me to breathe. Having zero desire nor the feeling of need to breathe, I was not afraid should I choose not to breathe. My job here on Earth was not finished; I took a breath. It was at that moment where I left death behind and never returned. This happens each time I’ve gone septic. It is no joke.

The sepsis I experienced shortly after my neurostimulator battery replacement surgery was due to a urinary tract infection (a result of a neurogenic bladder) that went riding through my blood and made its way to my lungs where it settled and caused serious pneumonia. Because it was not based in my port-a-cath, Evergreen doctors and nurses were able to save my port. They added a jugular PICC line with three lumen to use along with my port-a-cath lines in order to infuse a wide variety of antibiotics, fluids, TPN, pain medications, sedation medications, etc. My jugular line was placed bedside while in the ICU. During the first placement, it did not land where it should have landed. After an x-ray confirmed this, I had to undergo a second line placement on the other side of my neck, in the second jugular vein. This time, it found the right way to my heart. I remained in the ICU for a few weeks and finished out my time there on the main floor. Evergreen Hospital was super good to me. I couldn’t have asked for better nurses and hospitalists. I was lucky. They saved my life. A life that has been threatened a few times before.

After my sepsis attack in February, I found myself yet again in the hospital in the beginning of March. The reason for my stay this time is very private and that is really all I want to say about it. If you are having serious problems getting control over your symptoms, send me a message and I can give you another thing to try.

Now I have been placed within a “care circle.” Basically all of my doctors across two of my hospitals came together to discuss my treatments, illnesses and concerns. The goal of this care group was to have one person who would receive all discharge notes, referrals and charts. This allows all doctors to be on the same page when it comes to treatment. Everyone is aware of what everyone else is doing. My new PCP and her nurse took on the challenge to be that person; the person who will manage the actions of all doctors and nurses, both in clinics and through my HHC (home-health company). My PCP belongs to VM (Virginia Mason). My neurologist, cardiologist, hematologist and gastric neurostimulator surgeon all also belong to Virginia Mason (VM). My gastroenterologist of five years and counting, second neurologist, colorectal and general surgeon, pain specialist, and interventional radiologist all belong to Swedish Medical. Swedish Medical Issaquah is considered my “home hospital.”

My latest hospital stay and septic shock episode involves both of these hospital systems. One day not long ago, I noticed my port site to be extremely sore. It is never sore; so I called my HHC (Walgreens Infusion and Respiratory Services) to talk to the IV nurse on call. The nurse I later talked with wanted to come over and check the port site and see if it needed to be re-accessed. Given the amount of pain I was in, the size of my port, the fact that my nurses had to use the same hole to access the port each and every time because it was so small, my nurse did not feel comfortable re-accessing and urged me to call my doctors in the morning to see if they could check it out. The only person I was able to get a hold of that day was my PCP nurse. She suggested that I come in to see her IV nurse for opinion. I did and that nurse suggested I have a new port placed. Following their judgment, I had a PICC line placed for use while I waited for a new port surgery the following Monday. Monday came and I went into surgery at VM for a new port. This was the first time I’d be getting a port from a surgeon at VM (Dr. Neuzil). My last ports were placed by a physician at Swedish. I assumed the surgeon at VM knew what he was doing.

I went home and all night I was in an amazing amount of pain. I’ve had MANY ports before and none hurt like this. I thought maybe I was just being a baby, so I took some Advil and went to bed. I woke up that night more times than I could count. I woke up out of pain. When my husband woke up, I desperately asked for an ice pack, pain medication and my normal medications. I expressed my level of pain to him, but there wasn’t much he could do at the time. After several hours of no relief, I began taking my temperature. I watched as it increased from 101 to 102 to a high 104.3. I started calling all of my doctors and HHC nurses. No one was in the office. Not one person from my “care conference.” I tried to do things by the book. I finally got in contact with my surgeon’s office after my anesthesiologist from the day before, called as per routine. I called his office right away for direction. I didn’t want to call my husband out of work in the off chance the ER would write me off, wasting my husband’s work day. I didn’t have many friends in town. The desk clerk at my surgeon’s office gave medical advice without question, all of which was completely and absolutely wrong. Out of frustration, I called a friend as a last resort for a ride to the Emergency Room at Swedish – Redmond. I still measured at a 104 in the ER and so they administered the first dose of my IV antibiotic, sent a picture of my angry port site to my IR at Issaquah and administered Tylenol in hopes that it would reduce my temperature.

Here is the picture I took of my very angry and contaminated unaccessed port-a-cath site before I had it removed via emergency surgery at my home hospital:

Infected port site

There was question as to whether or not I should go to the hospital that did the initial surgery. Of course I didn’t feel comfortable going back. With my port being infected not 24 hours after placement only meant one thing; it was contaminated before it was even placed. My hospitalists all told me that in their 30 years of being a doctor, they’ve never seen something like that happen. Well, I guess I’m just lucky! As soon as I arrived at the hospital, I was wheeled back into the OR for the emergency surgical removal of my new port. My anesthesiologist and IR team where there waiting for me way after hours. They were amazing. I came out of surgery with one very large hole in my chest where the port and some unhealthy tissue was removed. The hole was so deep you could slip in a whole silver dollar. It also hurt like nothing else I’ve felt. The wound was packed and then dressed with a wet to dry dressing many times a day. I remained in the hospital for a few weeks. Once the contaminated port was removed and sent out for testing, my temperature broke and I began feeling better.

I returned home to continue treatment with a new company, Providence Healthcare, for wound care where they would dress, pack, and re-dress my wound every to every other day. I won’t go into detail but this activity was extremely painful and slow.

My deep wound could not be sewn up in fear of trapping in even the most common of skin bacteria. This would surely cause the formation of an abscess and that would be entirely counter-productive. I also went home on IV antibiotics, as is usual for sepsis discharge. A month after I finished my IV antibiotics, I would be able to have a new surgery to replace my last two ports. This was done just last Tuesday. I was referred to a new surgeon by my GI doctor. He, Dr. Plaskon, is a general surgeon. He also has wonderful bedside manner. I never lost trust in his abilities as a surgeon. I knew I’d be going into surgery with an open wound, that same open wound that nearly killed me. I was still afraid I would have infection problems with my greatly increased risk of infection from my last few surgeries and open wound. I was set to have my port surgery a few weeks back but they delayed it by a week to allow for more healing of my wound. So Tuesday, May 14th, was the vindicating surgery day where I would attempt to, with the help of my surgeon, fix all that was taken from me a month ago. I wanted to forget. I wanted to erase the day that the VM surgeon nearly took my life through his ignorance and lack of skill. He set my progress back by so much, but I couldn’t let it keep me there.

I was just discharged from my wound home healthcare. My wound has closed. It is scabbed and will leave a large ugly scar. But, scars are like badges of honor received after fighting for your life. I will miss my wonderful wound care nurses. They did everything they could to ensure my wound would safely heal and that I was mentally and physically comfortable. They went above and beyond anything I could have asked for when it came to something so scary as my open wound. They were always in constant contact with all doctors involved and even helped me get the relief I needed when I experienced pain. Ever since my Tuesday surgery, I’ve been extremely emotionally sensitive. I truly appreciate every day given to me and everyone in it. I’m frustrated with my lack of energy and how I’m still restricted by that energy. If I push myself beyond the invisible line my body has, I crash. I become sick. I experience intense migraines. I want to sleep but can’t. So I just hope. Sometimes that’s all you can do. Hope to sleep; hope to live; hope for consolation that needs to come.

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This year, in May of 2012 my last grand-mal seizure put me in the hospital for observation with a VEEG until I had another seizure. This was not going to be exciting and it wasn’t. Most of my seizures were weeks to months apart and I was afraid that either I would leave with no seizure or have one and get a diagnosis I wasn’t prepared for. Turns out, I had another grand-mal seizure after they slowly reduced my ativan to nothing and from that, they diagnosed generalized Epilepsy and started medication treatment immediately. After a few days on the medication I was released with strict rules to follow regarding this medication. During my stay and after the seizure, however, I complained about the worst back pain I had ever experienced. Everyone shrugged it off telling me, “this is not why you are here. You are here for seizures, not chronic pain.” Um…this is not chronic pain, this is ACUTE pain. You know the kind that makes you want to scream every time you breathe, move, stand up (nearly impossible) or sit down. I waited a day just for a doctor to prescribe a heating pad. Really? So they made me think it was all in my head. If anything it was a muscle pain, like a charlie horse in my back from my intense grand-mal seizure.

After 5 weeks of my moaning and complaining and very unusal appearance to my husband, he took me to the ER because my less-than-helpful PCP would not schedule me for an emergency appointment (I know they exist). So I had no other choice; I went to the ER. They were skeptical too. “Are you pregnant?” they would ask. Uh, not a chance in … was I pregnant. “Are you willing to provide a urine sample?” If it gets you off my back about it, yes! After 2 and a half hours of lying there crying in pain the doctor comes in with my films and simply stated, “Well, I know why you are in pain.” Thank you, thank you, thank you, thank you – more vindication for me, not in my head. He proceeds to show me my x-ray of my spine and wouldn’t you know it, a completely crushed L1 vertebrae. We hypothesized this happened during my seizure in May and that the muscles contractions during it pulled that bone apart. Painful? Yes…there are no numbers on their scale of uselessness to explain this level to them. “Those injuries hurt really badly.” Hey thanks, I know, what are YOU going to do about it? Well, the position of the break is one where we can do nothing. I consulted a surgeon and he said he could do nothing to help other than offer a body brace (something like a body cast but could be removed when lying down). Out of the humanity in his heart he offered IV Dilaudid which helped a TON. Nothing at home would touch the pain because what I had at home I was already using to make my already present chronic pain tolerable. I attempted to go in for pain help a week later as it was preventing me from sleeping and they gave nothing but IV torodol and benedryl. I’m thankful for that much but would have rather had something for my pain. Instead I got a muscle relaxant and medication for my progressing UTI that popped up that day.

So, I’m struggling. Trying to take it one day at a time, one hour at a time and living for good days that seem to be getting further and further apart. I often wonder if anyone is listening to me and believing in what I am saying when I express pain through teary eyes. With all my medical issues, do I really look like some drug dealer off the street? I have an appointment with one of the most amazing pain specialists in the state on the first of August and hope he can provide me with something else as I know the limits of a PCP or any other specialist are heavy due to the messed up Washington State laws regarding narcotics, as if they have some right to determine who is really in pain and who is not. I’d like to break a few of their bones, give them the throw-up flu and infect their bladder and deny them pain medication and see how long they’d last. Certainly not as long. After tomorrow, I will be finding a new PCP and my wonderful friends on Facebook have pointed me in the direction of the University of Washington. My geneticist is there, so I figured I would give it a shot. I really can’t do any worse than I have with my current doctor.

Sorry if this post is a bit negative. I am very much dreading my appointment with my PCP tomorrow. I hope she has her crap together because so far, she hasn’t. No return on my phone calls or e-mails unless she has something negative to say or something that would make me work harder than is necessary to get something accomplished. Sometimes I feel like giving up but it is people like my GI (Dr. David Patterson) who keep me going forward. He actually called me and asked me to come in. Feeling as if I had done something wrong, like you feel when your father uses your middle name and calls you into his office (you KNOW it won’t be good), but he assured me it was merely a check-up and to review my medications. That is the first time I had an appointment scheduled not by me, but my doctor. It is apparent he is thinking about me and worried/wondering how I am doing. For that I am grateful. In this whirlwind of life I lead there are a few constants, my husband and family, and my GI doctor (who I have been with for at least three years).

Anyway, it is late and my appointment is early. Good night everyone and good luck.

~ Happy Tummy Days!

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I just wanted to share something with everyone. Most people don’t know that I live in constant pain, so much pain that I’m not even aware of it at times (but it shows itself in other ways like increased heart rate). I don’t tell anyone about this pain anymore. They know the story and roll their eyes so I’ve put on a smile, and go about my day. Fake most of the time but sometimes real. What frustrates me most is that the ones who are supposed to help me, believe me and understand me are the ones who deny me help and call me crazy. “If you were in that much pain all the time you’d be screaming and unable to do anything.” Not true, sir. As any ER doc would fail to understand is that those with chronic illnesses cannot simply cry out every time they feel pain, lay down every time they feel tired, nauseated or upset. What would life be? The difference between a real chronic sufferer and a fake one is the smile, compassion and understanding.

Why are there all these message boards and forums created by patients? Because we want to forget our problems, for they cannot be solved (for lack of trying by the medical field or for they truly cannot be helped – hospice), and try to help others through their problems, their reaction to the truth of their disease and just to be there for them when they need someone to talk to because no one else wants to listen. There is a definite difference between want and has to, and that was intentional. Most doctors have to listen, but they aren’t really listening because if they were really listening, understanding and believing, they wouldn’t have to listen, they would want to listen. The boards have been very helpful to me and the people visiting my site, e-mailing me and leaving messages there have been amazing. I could not say more about them. No one knows them like I do. The chronic sufferer.

The pain medication I receive acts only to take the edge off my pain. It is enough to allow me to move around as opposed to being in bed all day. However, most people make the false assumption that activity means absence of pain. It couldn’t be further from the truth. When you live with pain for so long, you build up a tolerance to it. I’ve even had this justified by my gynecological oncologist, who said that I was in a considerable amount of pain of which I was unaware.

This was mostly tested when, during my VEEG (testing for epilepsy through in-patient EEG…NOT FUN). They were able to reproduce my grand-mal seizure by slowly reducing my ativan (that I have taken for years for sleep and anxiety) to nothing. Bam, seizure, and a very bad one at that. I don’t know if they did what you should NEVER do, and held me down but all I DO know is that when I came to and asked about it, my back was in excruciating pain way above a 10 on the pain scale of uselessness. They refused to listen or provide proper pain relief medication. They kept telling me that wasn’t what I was here for (referring to my chronic pain). I wasn’t talking about my chronic pain but rather acute pain in my back that made it hurt even to breathe. I even had to wait for them to get a prescription from my neurologist for a HEATING PAD! What is that about?!

They kept me off my sleeping medications but instead fed me Ritalin after 9pm to sleep deprive me as well and once I had my seizure, I was allowed back on them and sleep I did. They immediately diagnosed general epilepsy. My epilepsy neurologist brought up the idea of getting tested for mitochondrial disease. It was something I have been considered for quite some time but with the recent events, it made the diagnosis very plausible. I have an appointment with one of the best geneticists in the state, thanks to a friend I found on Facebook for recommending her. My seizure was strong enough in the hospital to crush the L1 vertebra in my back. If you know where this is, you know it is one of the worst places possible. It hurts to breathe, let alone do anything else. I was given a brace to use if I’m not lying down but truth be told, I am laying down a LOT. I am not a fan. If taking away driving for 6 months wasn’t enough, I can no longer even preform simple household chores. The burden on my husband continues to grow but I hope that once my back heals properly, I can return the favor in some way.

I guess I’m not feeling all that well so it is hard to make or see the positives. This weekend my husband and I are going to the Seattle sympohy to watch them play Disney music. That should be fun and it is in the middle of the day so I should still be relatively feeling better than I do by the time evening rolls around. It is my first REAL outing in quite some time. Just to be out is a treat in itself. Maybe afterwards we could catch some dinner. I don’t eat but I completely enjoy the company. In any case, I’ve rambled on and most of it doesn’t make sense but I thought I would update on the VEEG and upcoming appointments and tests. My issues with my current PCP are for another day. If I commented on it now, I would 100% guarantee things would be said that I would most definitely regret. Let’s just say, I’m on the look for a new one and many of my friends have led me to the University of Washington (where my geneticist is, coicidentally), so I figure I would give it a try. Anyone is better than who I have now.

Thank you for all your support, prayers, thoughts and love through all my difficult times. I read them all and respond when I can. They mean the world to me and you are why I continue to keep my site active. To promote awareness and to give a place to those who may feel alone with a diagnosis that is poorly understood, not well documented, and contains patients who can be countries apart. Should you ever need a listening ear, encourage, or help, I am here for you all <3

Thank you all for everything and I hope you are having a good night watching the Olympic summer trials (my favorite thing to do aside from the real ones held this year in London!)

- Kirby

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“When things go wrong as they sometimes will;
When the road you’re trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.
Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you’re hardest hit-
It’s when things go wrong that you must not quit.”
~ Unknown

Today has been filled with much frustration. I woke up to my own screams of pain and found out why I was in pain (not from the continuous migraine I seem to be experiencing and have for the past few days). I am in the middle of a bladder infection which proved to be resistant to the medication I was on for the past THREE days and when you couple that with a neurogenic bladder you get a bed wetting situation. Luckily the pain of urination brought me out of sleep early enough to leave only my clothing needing washing. I was then later made aware that my medication was changed and we are hoping this will finally start controlling the bacteria. Based on my last infection, I am on guard in case this bacteria translocates to my kidneys or once again goes septic by infiltrating my blood. Until the bacteria is gone, this will remain a very big and scary possibility. Not only do I have that as a risk of infection (uh, already infected but contained within the bladder) but my surgical wound where they placed my portacath is still continuing to drain. NONE of my other ports or piccs had pockets of fluid that required draining but this one, for whatever reason, is draining. Not a little bit either, but a lot. Enough for every access to require pressure to get it all out. Fact is, my body will just replace it with more fluid; fluid that when accessed is trapped in that same pocket my port is in and become infected.

I had my portacath checked on Monday (4/2/12) to make sure it wasn’t the port itself, that was leaking but after a five hour stay at the hospital, blood cultures and hours of Facebook later, we determined the port is working perfectly and hasn’t moved out of place in any way. So now we just associate the leakage/drainage to the surgery itself. I might have mentioned before but the recent port placement was harder on my body than usual. It has been swollen and bruised and tender since first placed where none of my other ports swelled or even bruised. But with this one you can see it bruising so badly that you can follow the catheter right up my neck and back down again.

With these risks, I guess I will box myself up at home and hope that no infection comes to me because I’m a walking hotel for bacteria right now.

This isn’t the only thing that has me frustrated though. I don’t often get frustrated at tests or the consequences thereof, but what has me frustrated is the stuff that I can’t do right now. I’m still recovering strength, stamina and energy from my brush with death and because of this, I can’t do what I want to do, I can’t do what I need to do and I can’t do what I will want to do in the near future. It is STILL too cold for ME to go outside and walk around. I still require a lot of sleep or I end up cranky and make posts like this. I can’t do much outside the house or I get sick from exhaustion and for whatever reason, my body’s sleep cycle is all wrong. I blame the hospital visits for that. I do what I can at and through the computer. Connecting with friends, making phone calls for appointments or just to say hello, I snuggle with my Ellie and look forward to the few hours my husband is home from work for some real person interaction.

I know it will get better. I know I will get better. I won’t drop the diseases that I have already been diagnosed with but I will get my strength back, my energy back and maybe a little part of my life, dreams and inspirations back. I’m just frustrated with how long it is all taking. And I don’t think I’m the only one frustrated with how long it is taking. Maybe once the infection is gone I can feel less sick and crappy and start doing more but for now…nothing is looking too hot.

I don’t like ending posts on a negative note so let me find a good picture. I have employed Ellie as our transporter of things from upstairs to downstairs by linking it on her collar and calling her around the house. Need your hair gel and you are upstairs…no worries. Wish she could carry the space heaters up and down the stairs. Now that would be an invention.

I had to throw this one on too. A friend’s nursing school class went green for Gastroparesis. I was in the hospital that day but this really means a lot to us. Seeing support from those who do not suffer offer hope that someday, we will be recognized as we should be and a cure or more reliable form of treatment be found.

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Saturday, February 11th, 2012, started off like any other day, but it was not to end like any other day and has forever changed me in ways I didn’t think possible. I wasn’t really feeling myself all day. With GP, who really does have a normal day? What is normal? I was still trying to figure out that very question when I became very abnormal. I have issues controlling my temperature so being insanely cold is really not that out of the ordinary. The uncontrollable and massive shaking attacks that happened that night before bed probably would have been my first clue that something was horribly wrong. Again, what is normal and what requires a doctor appointment? I bundle myself in every single blanket, haul the personal space heater upstairs to the bedroom, set to high and also sleep on a heating pad set to high and attempt to sleep off whatever it was that was making me feel like crap.

The night was very surreal. I would wake up but feel very weird, delusional and disconnected. It was 3:00am during one of these awake moments that my loving husband checks on me. He realizes right away that I was burning up. I’m not entirely responsive but adamant about NOT going to the ER for what is probably just the flu, especially at this time in the morning of February 12, 2012. He is not happy about it either but takes the stand that if something needs to be done, just get it done and over with. Little did he know that many somethings needed doing and it was going to be awhile before they’d be over with. He runs downstairs to get the trusty SpongeBob thermometer and finds out that it read a very convincing 103.6 (both times). That thermometer never works quite right and if it was reading a temperature, then more than likely, the actual temperature was much higher. He says to me that we have to go to the hospital right now. Ugh, I roll over and refuse. My energy at this point is rather pathetic so it doesn’t take much to convince me to grab what I could and get in the car for a ride over to the Redmond ER. *Side note: we will never again be visiting the Evergreen Hospital due to their enormously high error rate when it came to diagnosing and treating patients. So we will take the extra 15 minutes just to be in the Swedish network with doctors we know and trust.*

As I walk in bundled in my favorite blanket, half-awake and probably looking a little like death, the receptionist, upon seeing me, simply says, “Oh no.” Not exactly the words you want to hear and definitely not something that conveys any sort of positive attitude towards this downhill situation. At 3:00am the ER is not all that full and we are seen immediately, stats taken, blood taken, IVs started and the decision is made, though not as hastily as I would have thought they would be, given how obvious it is that I was septic from an infection in my port, to transport me via ambulance (yay, my fourth one) to my favorite hospital, Swedish Issaquah. My temperature continues to rise and my self-awareness continues to decline. I vaguely remember the ride to the hospital, my arrival to the ICU and the number of tubes they placed (urinary catheter, NG tube for suction – my stomach began to fill with fluid at a rate that had doctors overly concerned that I may aspirate that fluid along with it forcing me to use more than necessary energy just to breathe, breathing tubes and many PIVs for fluids, pain medication, broad spectrum antibiotics, etc.).

It would be three or four days before they would get a correct identification on the infection quickly taking my life, and for the antibiotic to bring me back from an almost coma-like state. I remember during the first few days, that I was not breathing well. I was sleeping but in my sleep I hear the nurses telling me to take a breath. For me, at the time, breathing and not breathing were the same. There was no urge to breathe and because of that, I would stop breathing periodically requiring nurses in my room 24/7 just to tell me to breathe. I was in such bad shape that the doctors discussed placing me on life-support. Life-support…in one single night I went from one extreme to the other. I was very unaware of how bad things were, who all was involved, though I do remember Dr. Patterson being there – love his accent, so I never experienced fear, the fear I’d lose my life after so many years I spent fighting for it.

The fog lifted a few days after my mom arrived. She jumped on a plane that same day Victor called her and informed her that I was not doing well. From his voice she could tell things were desperate. I will be forever grateful to have had her there with me. She fought to get me the things I needed. It was the first time I had someone else in my room with me all day. None of my family lives here and Victor has to work. I think it was Friday of that week that I began to stabilize. Well, they had gotten me on the right antibiotic and my temperature lowered to normal for the night. Waking up was a different story. I had begun to spike another high fever, my O2 stats were dropping as my heart rate escalated above 170. I was shaking from pain and fear. NOT ONE NURSE OR DOCTOR responded to my help button. I pressed it several times. Each time I’d get someone talking to me, “OK, I’ll send your nurse in…” and then another 15 minutes go by, “OK, I’ll send your nurse in…” 30 minutes go by and I’m getting worse. Scared to death I’d die alone. It was too early for my mother and husband to be by and my doctors were not yet doing their rounds. It was a half-hour after nurses changed shifts so I know they were around. But they were not by me. I desperately called people just to talk to someone, anyone so I wouldn’t be alone should I die. My husband’s phone is dead, my mom doesn’t answer, but my GI does. I’m in complete tears and hysterical by this moment and told him what is happening, he asks, “NO ONE is in your room right now?” Nope, not a soul. He told me he’d call the hospital. At that point, while waiting for Dr. Patterson to shape up the nurses (Hello, I am in the ICU – why are you all taking so long in the first place!), I called my dad. He is at home because of the flu and wouldn’t be allowed in the room anyway, even if he had made the plane trip with my mother. I told him what had happened and how scared I was and that I didn’t want to be alone. I wanted to talk to someone. He couldn’t handle it. He told me that everything was going to be fine and in that, I found enough peace to end the conversation with him as it seemed to be entirely too much for him to handle, being so far away. I took my camera and made a short video for insurance purposes to prove a severe lack of ANYONE in my room or even at the nurses station which I seemed to have a straight shot of (because those darn nurses NEVER close the darn doors!). It is slightly upsetting but I offer it here. NEVER let your ICU room be void of nurses if you are in shock. It really is common sense but for whatever reason, today, common sense failed them.

*Enter Nurse From Hell – AKA: Crystal* My husband, mother and service dog, Ellie, had already arrived to help calm me down but in strolls Crystal. For whatever reason, before she even spoke to me, she had some sort of resentment towards me. She had no business being a nurse, and an ICU nurse at that. To be a nurse requires feelings, sympathy, empathy and a general care for the well-being of any human that walks through your doors despite their shortcomings or mistakes. She possessed nothing of the sort.

As she walks in, she informs me that the previous x-rays they did last night of my abdomen (yay for paralytic ileus), my PICC line was noticed to be out of place, dangerously close to the apex of my heart (where one of the pacemakers is located and if tampered with could cause the heart to stop entirely), and they could not use it. She then stated that she would be placing another PIV to allow for fluids and medication while we waited on the PICC line nurses to assess and fix my line. Fine, do it – I am in clear need of morning medications (including the life-saving antibiotic) and fluids. Crystal notices Ellie quietly laying in the corner behind Victor’s chair. I’m watching Crystal as she places the WORST IV EVER.

How she managed to find that tiny little vein is beyond me. I can only attribute it to her skill and my clenched fist. Fact is, the vein is small and my veins are already notorious for blowing (infiltrating) and she thought she could run everything through that little PIV, including D10. D10 is basically TPN minus the lipids and a few other things. It is thin enough to be given through a PIV. However, even if it is thin, my vein is still too small to handle it and as soon as she runs the pump, I scream out in pain, crying and pleading her to stop the pump. Slowly she does so and I, not being ignorant in the area of IVs, TPN or the tubing, quickly clamp it off. She gives me the stink eye and tells me not to touch my lines. I tell her then to clamp it and flush it because it is currently burning through my tissues. Crystal simply says, “I’m just following the doctor’s orders.” I don’t care what she is doing, I’m the patient. She clamps the line and flushes it and continues to push through the rest of my medications, one including my pain medication. Before she leaves, she tries to be all stealth-like and flips on the D10 pump while I am distracted. Again the burning, stinging pain comes back. I turn to her and ask, “Did you just turn the D10 BACK ON?” She nods. I said, “well you best turn it off because the pain is making me want to chop off my hand.” “That’s a bit exaggerated,” she says. Oh no you didn’t. I reach over and clamp it myself and then demand she flush it before she leaves. And, she does…so forcefully I notice the pain returning. I yell at her, “not so hard!” “This is just as hard as when I pushed all the other medications,” she lied. By this time I’m hysterically crying AGAIN, in pain and shaking from her mere presence. This has my service dog all upset too, and rightfully so! She is there to protect me. The nurse finishes flushing and leaves the room.

My mother and husband do what they can to calm me down so as to not die from a heart rate that is way to high. The charge nurse comes in and informs me that my service dog needs to be removed from the hospital. He states that a service dog can be removed from a hospital if the presence of the dog makes his staff uncomfortable to the level that they cannot perform their work. He stated that a nurse has complained that my service dog, Ellie…

whose sole purpose in life is to be happy and share that happiness with others, showed her teeth and growled at Crystal. Ha, never heard such a load of crap before in my life! Clearly this is her way at getting back at me for doing um, nothing! I did nothing and now I have a problem and she goes along her merry way. Before the charge nurse leaves I tell him I want a new nurse. He says, “I’ll see what I can do.” “Um, no…you misunderstood me, GET me a new nurse,” I demanded. He leaves the room, Crystal comes in and informs me that I have a new nurse. But not before belittling me some more by addressing my mother with the schedule of doctors appointments and tests that will be run that day. I’m not 2, you can talk to ME. I AM THE PATIENT! I still have a write up to do for her. No need for other ICU patients to be tortured by an arrogant nurse who shouldn’t even be a nurse in the first place. She is totally on my list.

The rest of the stay was pretty normal. I was there from February 12th – February 25th. We had some issues with pain management and sleeping medications but overall, things went as they should. My doctor never fails to remind me how close to death I came during my first week there. I was delusional and very much not myself. He said that if I had come in any later, they would not have been able to help me. My husband and the doctors and nurses of the Swedish Issaquah ICU saved my life. On the day of my discharge it was snowing. It was beautiful and perfect. I went home on IV antibiotics that were delivered via drip for another week and a half. I was then to have more blood cultures done to make sure the antibiotic was successful in eradicating the infectious bacteria. It wouldn’t be until a month or more later that I would receive permission from my wonderful infectious disease doctors to have my port replaced. And I did.

The monkey is its protector. This port placement was unlike any other. It meant something to me, I beat the odds and toughed it out. Simply stated: I SURVIVED!

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