Going to do a quick update and sort of list out things that have changed since I last updated and/or am too lazy to scroll through to find the other updates Oct: Ileostomy (complete), January, February, April I was septic with a mixture of line and blood infections (one from a portacath placement of a contaminated port, a UTI and pneumonia because “I’m special…” or that’s what my doctors say). March I was inpatient for another issue. February and May I had port replacement surgeries. April I spent the month trying to heal the open wound the contaminated port left me with, because it was too risky to close it all the way. And why is it that I always get questioned (no really, someone asked this – “did you recently drink something warm or scratch at your incision?” at the ER when I came in from that surgery in which the contaminated port was placed… *face palm* It wasn’t even accessed yet – that’s how old that port was…) about ridiculously high temperatures (no higher than those our doctors tell us to go in for, when we have central lines), tachycardia and dehydration (and hello pain?). I made it through most of the summer without an admission, minus weekly iron infusions that we now have figured aren’t working, not because there is a lack of iron but a lack of blood product from my bones. Then there was August. Just shy of fall… Bacteria from my large intestine decided to hitch a ride into my blood stream causing another case of sepsis with this one being just that much worse than the previous. Every time I make it to the hospital via ambulance from my ER, my hospitalist (who I have a relationship with now since that whole near death thing of ’11) always comments, “you know, if you didn’t come in at the time you did, you wouldn’t be here…” Nooot something you tell a sick person when they are still trying to get OUT of the hospital. Save those gems for story time later.
It was during that admission I had my gastric neurostimulator removed. I questioned myself about whether or not to let the public know about that last part. I am still a major supporter of the device and think that above all else, it is by far one of the best things to try anyway. But after a few years with mine, it had to be replaced once (the battery – very superficial, never overnight admit) and then I lost so much weight from one of the previous septic attacks, I was struggling to hold what weight I still had, making the pacer stick out like a sore thumb. While still septic, I left them no choice but to remove the battery so as to not give my body another source of infection. They would not be able to go in and get the leads until I was well enough. Well, I apparently was “well enough” on the 2nd of October. It is during that operation where they removed the leads (the actual difficult part of placement/removal/replacement of that neurostimulator system) by of course opening my abdomen and then they also did a pyloroplasty. That just means they went into my pylorus and made that hole bigger in hopes that things wouldn’t get so stuck in my stomach and drain a little better via gravity. It was already shown on an EGD earlier this year that I now have 0 motility. That’s 0, 0% or complete lack of stomach motility. So, my GI says, no more need to test that any further. Guess that’s a good thing about it! One less test to worry about!
In any case, I’m home now. Was discharged (too early imo) Tuesday and while I continue to battle pain (abdominal surgeries are the worst because there really isn’t anything you CAN do without somehow involving the muscles in your abdomen. The same muscles they either pulled apart, sliced through or expanded make sitting up, laying down, moving, breathing, oh my gosh hiccuping!, or otherwise doing ANYTHING without an enormous amount of pain. No problem. Even with all of our fantastic malnutrition issues, we still manage to heal, even if it is over 2x longer than anyone else.
New things for me – nothing much but working on trying to update some pages (and also create them, don’t hate me for being behind!) and work on and finish the new video. It isn’t like the others. It isn’t really meant for awareness. I think I nailed that one pretty good in like v5 or something. This one is meant to be to those who do know me to some extent in the present or for some period or chunk of my life. I made it to show all of me, my life, the things they don’t see when they see me in the hospital, an office visit or even my friends who don’t know everything. Needless to say, it is quite an ambitious endeavor but I will kick it around until it is done or I am bored.
Thank you for all your prayers, words of encouragement and messages even when sometimes, I might not tell you something is wrong. I read them all, even if I don’t always respond. The situation doesn’t always allow me to.
Sorry, again, for not updating. At the end of December, I was hit with another disorder that sort of the last straw. I completely broke down. I went through numerous tests after realizing in the hospital, I was not urinating as often as I should nor did I have ANY sensation. When I had a follow up with my PCP, I mentioned this to her. She immediately put me in touch with a urologist and within days I was subjected to rather embarrassing tests that stripped me clean of any sense of dignity I had left. The result of all my testing (as a whole it is called urodynamics), I was diagnosed with a neurogenic bladder. This combined with my intestines slowing down even further, requiring the most powerful of laxatives, GoLytely, to be pumped through a nasal tube fed into my duodenum.
I became very upset and felt that everything in my body was weakening or stopped altogether. I was not in a place to blog. So that is why it has taken me so long to write.
But, I’m back now. I was just released from the hospital 4 days ago. I was admitted from the ER on 1/4/12 for a suspected portacath infection. I have never had issues with my port until now. Days prior to the admission, I noticed my port had issues flushing. My nurse even said it was requiring more pressure to flush than usual. It stopped drawing blood a few times that month, requiring me to go to the ER and have them re-access and TPA the line. I wasn’t at all suprised they would think infection but when the ER remembered I had a MRSA infection not to long before, they didn’t want to have anything to do with me and rushed me out of the ER (they have a free standing ER with doctor offices above) to the Swedish Issaquah Hospital for further testing and antibiotics. I said that correctly, Swedish Issaquah Hospital. I gave them a second chance. If you do not remember what happened last time, read the previous post. I was totally on them for everything, this time. Making sure I stood up for myself and get what I needed to survive a potential septic attack. I was put on contact restrictions, meaning everyone coming in had to wash their hands, put on gloves and then put on a yellow gown. This isolation was in effect for the entire 10 days I stayed.
Since they couldn’t use my port, I had to be given everything through a peripheral IV line. Those, for me, don’t work very well. The first IV line was placed by a nurse at the ER; they wanted to get me on antibiotics ASAP, so the IV would let them give me a dose before the ambulance arrived. *Sigh*
The nurse that I had made everything worse. I never had issues with their staff at the Redmond ER but here I was, striking out again. My nurse had tremors, and they were very bad. I sort of felt bad for her because I, myself, suffer from slightly shaky hands. But when she made too many mistakes because of her shaking hands, I began to get irritated. So many people would stop by and ask if she needed help (because the process was taking WAY too long due to her tremors – and they knew it too which is probably why they so frequently asked if she needed help) and she’d yell back at them, “I’m FINE!” So she manages to get a peripheral line in on the first shot with minimal discomfort. However, she did not secure the line before she took both hands off the needle to get the dressing and tape and with that, the needle came out. She told me that it was OK and she’d just use the same hole. Um, yeah – if anyone tells you that, don’t let them touch you. She did go through the same hole but of course the vein is bad now and she just dug and dug around trying to get the needle into my vein. I was practically crying in pain when she finally got it in. This was all after she clotted my port. The port was drawing blood and they needed that blood for a culture. It gave enough for the culture and then while drawing regular labs, it stopped. My only guess is that her tremor hands pulled the needle out just enough to look like it is in when it is not. So she had to draw from another vein. With tremor hands, it was another painful process and one that went so incredibly slow. They actually told the ambulance to hang back 30 minutes because she wasn’t nearly close to being done. *Rage*
I have never been so happy to see an ambulance stretcher in all my life. It meant no more sticks with the lady who had tremors, no more unnecessary pain! I got to ride again, in the ambulance. The guy back there was fun. We talked about all the old-school stuff we played with as kids that kids today would not be able to correctly identify. It was raining and the roads were jammed; it was a loooong trip to the hospital. But I was doing relatively fine. I was nervous, however, about how I’d be treated this time versus the last time. I got put on a different floor in a different ward with new people (for the most part). They were amazing. They didn’t take hours to check in on me when I asked for someone and I got my all the medicines I needed when I needed them (things like my depression medication and sleeping medications are on a rather strict schedule and cannot be missed).
Because I was in for an infection and not an ileus, I was allowed proper pain medication to help control it. I had that come every two hours with benedryl every 6 with my zofran. It worked very well. The nurses were even nice enough to help me with showers.
Ellie and my husband were constant visitors. He brought stuff to my room to help make it happier. All the nurses would come by just to see it and I was said to have the “coolest room.” I won’t lie, it was cool. Just because you are on contact precautions, doesn’t mean everything has to be plain.
A few days after I was admitted, they removed my port. I was so sad to see it go. They removed it before the cultures came back because of the intense pain I was describing. They didn’t want to take any chances and really, I didn’t want them to either. A few days after that I got a PICC line so I could run my TPN. Well that was another adventure.
The lady came in to do my PICC bedside. I was not exactly thrilled about this idea. I’ve always had them placed in IR. But OK, I trusted her. Once she placed it she asked me how I felt. I told her I heard something weird and now my neck hurts. I think your line is fine, let me get the X-ray people. Sure enough, the line went straight up my jugular. Not in position! So she pulls it back out and tries again. “Did you hear anything this time?” she asked. No, but now my shoulder that has been unbelievably painful is now in more pain. I told her it wasn’t in place, I know, I can tell. Again with the X-ray and again, not in place. She asked me if we could try again and if not then she’d pull it out to make a midline, and that would allow higher nutrition fluids to be given instead of the regular IV stuff. I’m like no, just do the midline now and I’ll see IR on Monday. Monday was a few days away but I didn’t want to be put through that all over again. She does the midline and later the nurse comes in to draw blood and bam, no blood is coming out so now it is completely useless.
When I finally got up to IR, they just used the same line and was able to put it into my SVC (superior vena cava). Took them like 3 minutes. Now I have a PICC line again.
The only thing I like about it is that it has two lumen. (GO –> HERE <-- for excellent information on Central Lines or CL) Otherwise the downside is that it gets pulled and yanked on by tons of things like chairs, doors, couches and my dog, Ellie. My new port will be placed on the 23rd of January. My ID (infectious disease) doctor said I needed to wait a week after finishing antibiotics before they could put in a new CL. The interventional radiologist decided, along with my GI doctor that a port would be better than a Hickman. My GI has seen Ellie and knows that anything that dangles has the potential of being pulled out. With a port, you don't lose access, you just need a new needle, should it become dislodged, as it has in the past.
I was kept until I was able to control pain on liquid medicine instead of IV. They never did grow anything from the cultures so they have no idea where my shoulder pain came from. It isn't completely better and I'll need to go to physical therapy for it, but it definitely isn't as sore as it was while in the hospital. I'm glad I gave them another chance. I wouldn't have met all the nice doctors and nurses if I went to the one down in Seattle. The Swedish Hospital in Issaquah is now my hospital of choice! And to top it off, they make the best vanilla milkshakes in the whole entire world. Not joking.
Well – some of you know of the interesting string of events that I experienced over the past few weeks from Facebook status updates, but even Facebook was slightly censored. It all started out one night with an extremely bloated belly and lack of any bowel movement for the past few days. My husband had made the comment a few days before that I was bloated. Gotta hand it to the guy to have the guts to say something like that to his wife before even she noticed. Taking his observation for what it was worth, coupled with my own, I made a night trip to the ER at Evergreen. Mistake #1.
How NOT to be treated in the ER
I arrive at the ER with my husband and quickly get a room because they were not particularly busy that night. Bonus. I hate crowded ERs because those with chronic pain and chronic illnesses like us, always get the backseat when it comes to placing patients in rooms. Even the guy who drove HIMSELF to the ER, not doubling over in pain or wearing sunglasses or a washcloth on his head – complaining of a migraine – gets in over me, crying in pain, holding a throw-up bag with an extremely fast heart rate. Sure, let him go – he looks to be in a much more severe situation that cannot wait. —-Anyway—- we get a room as usual and I prepare for the normal battery of tests I thought were required for every ER admit. You know, bloodwork, x-rays, a physical exam… Nope, according to my attending, all those are for people in real pain with real issues. He walks in, with his face in my chart, sees the number of times I have been in the ER (yes it has been a lot but that’s because you morons can’t figure out how to control my pain or cure my disease! – hence my need for a pain doctor who he should have called but no, again, that’s for real patients) and he also sees my list of medications which contains ONE active narcotic given to me by my PAIN DOCTOR – Nucynta.
Side note: After the first two weeks of hell (mostly mental as it seems to screw around with your emotions and state of mind), it works wonderfully. No complaints after I’ve been on it for about 2 months now.
He takes his nose out of my chart and says simply this:
Go home and take a bottle of magnesium citrate. You are most likely constipated from all the narcotics you are on. Otherwise, you’re fine
Um..that is about the point I started crying in frustration and absolute rage. He didn’t even LOOK at me. Had he simply looked at my belly and listened for bowel sounds he would have noticed, without an x-ray, that something was wrong. I asked for an x-ray after he left because I was in absolute shock with my mouth open and paralyzed body. The nurse rudely says, “oh no, he won’t do that.” She hands me the bottle of magnesium citrate and I’m like – sorry, I don’t want it. If you have been to ERs enough you know what actions show the most rudeness back. Sorry but if you want to be rude to me, don’t expect me to take it. Not this late in the game. She gives me an ugly look and then hands me the typical discharge papers describing what constipation is and how to take care of it – proudly printed from the Internet. I said to her – take it back and shred it for me please, I won’t be taking those home either. Another insult. I’m boxing with both hands here. She gave another evil stare as she says, “well you will have to do that after I leave,” and she walks out with my rejected bottle of magnesium citrate. I promptly throw away their packet of useless information and advice. I’ve been dealing with this too long for there to be ANY information in there that I would actually benefit from. That and I knew it wasn’t a simple case of “constipation.”
How you SHOULD be treated in an ER
I call up Dr. Patterson in tears asking him what to do. I knew something was wrong. He told me to go to the ER he is associated with and to have them order x-rays. He must have called them or something because that is the number 1 first thing they did. If he didn’t call beforehand, than A+ to Swedish ERs. Blood was taken, of course, fluids were started and I might have gotten some IV toradol for my back that is infected, but they don’t know it yet. We wait for the results. I’m exhausted by this point, the emotional roller coaster I was on was enough to knock me out but the physical pain and discomfort kept me awake. How nice. The x-rays came back in record time and they sat us both down together (LOVE my husband for being there as he is often my advocate when doctors fail to listen or believe in me) and explained that I had an ileus of both the small and large intestine. This is not common. My entire digestive tract was frozen solid, paralyzed, not moving. It was a pretty serious situation based on how quickly things moved after that. They knew I had to be admitted to a hospital as the ER I went to is just an ER (it also has doctor offices on the floors above). They asked which hospital I would like to be transferred to and Evergreen was a possibility. Ha, no thank you – I will stay within Swedish as my GI is there and they don’t screw you over when you come in. *note, the ileus was not caught by the ER doctor in Evergreen why? Oh that’s right, he didn’t listen to me, believe me or even do a simple x-ray or physical exam* I got transported to the Swedish Hospital in Issaquah as it is brand new – I’m talking they just opened the patient rooms a few weeks before and I was pretty sure I was the first one in the hospital to even use their pumps. To further ready my departure to the new hospital, they placed an NG tube. Not the normal NG feeding tube. No, this one was for suction and was about as thick as your thumb. They placed with with no sedation and as they advanced this HUGE tube down my nose, I hear it cracking all the way through. Oh it was horrible. Not another tube in the nose!
Throat, ear and mouth (jaw) pain, incoming. They didn’t run anything – they just set it up, including placement of a new PIV for contrast. They refused to use my port. They didn’t want to change out the needle for the kind that handle the contrast. Oh well, like everything else – I let them do their thing until they start screwing up and then I become devil patient.
I slept/rested in my room with my husband as we watched TV until the ambulance arrived to take me back. Victor went home, first, to take care of the dogs and feed them and I told him, since Issaquah is no short drive, he was welcome to stay home since it was so late already (after midnight, easy). Looking back, I probably should have had him stay. I’ve learned lots of things after these few hospital stays which I will sum up at the end of my novel of a post. Sorry =(
The Hospital Stay: Part I
The ride over to the new hospital was my first time in an ambulance. Not going to lie, I always wanted to ride one. Little did I know I’d be right back in one within the next week. Transition from the ambulance to my room was smooth. The room was beautiful, all the rooms there are single and have glass doors that slide open instead of the regular heavy door that opens without you knowing who is exactly coming in to hurt you.
A decorative curtain went all the way across that was usually open just enough to annoy me. What is it with nurses and doctors leaving doors and curtains wide open after they leave? Is that in their job description or do they think that much of themselves to NOT close the door after leaving? Their loss because each time they did, I hit the nurse call button just for them to close my doors (including the bathroom one, which I can’t on my own, and once in bed, I can’t get back out without help. No body needs to see the bathroom. Close the doors, people!
So I get hooked up to IV and TPN feeds (run over 19 hours) and the NG was on 24/7 suction. I’m waiting for my GI doc to e-mail me the x-ray that prompted this long chain of events so I can post it. Out of his mouth, “your first x-ray (I had many) was quite impressive.” Awesome in a not so awesome way. So I had my IV and my TPN but no medicine. It is by now like 1am. They have a list of my meds, none of which I received without asking. And even when I did ask – I wouldn’t get them for about four hours. Constantly clicking the nurse call button and I’d hear, “your nurse is with another patient, she should be done soon” or “your nurse is working down the hall of patients, she should be to you soon.” Any excuse to not get me my medicine, I heard it. I shouldn’t feel bad for asking for my medicine. I don’t care if a patient down the hall can’t keep her moans to herself. I still had the temporary spinal cord stimulator in, and a quickly growing infection. Take it like a man, sister, or I’m coming down there and giving you a real reason to moan and grown throughout the halls of the hospital. My pain was a 10. I NEVER give anything a ten, but this pain deserved it. But when you have an ileus (in my case – two), you aren’t allowed narcotic pain meds and the non-narcotic pain cannot bring down level 10 pain. It is like coming out of a major surgery and not having the proper medications available. Yes I get my gut isn’t moving but you know what? It hasn’t been moving or when it did, it did it sloooowly, I don’t care about it anymore. Take away my pain please!
I did have two great nurses though. They were on top of anything I needed and when I told one nurse I was at a ten when asked, she was shocked and said, “I’m not happy with that, let me see if I can get you something else.” I also had HORRIBLE nurses, one I had the displeasure of having twice! She was the “special” one. When I came home to talk to my home care nurse about what she did, she was in absolute shock – completely speechless. My nurse put Imitrex IM (a SHOT) into my IV. I was lucky to survive that. My head was going to pop. I was like, did you just put that through my IV. Yeah, she says. Yelling now – Imitrex is NOT for IV!!!
I went through the whole week living off toradol and tylenol IV. They were never scheduled correctly so I’d get one after the other and then not get anything for six. Not too bright there fellas. I was also not given my normal medication. With this being my first ileus, I didn’t know what was normal and what wasn’t. Maybe they kept my other meds out to see if it accelerated the healing of my ileus. WRONG. After they messed up with my pain meds and not enough Ativan (again, it is in my charts people!) I asked for IV Benedryl to help calm me and let me sleep. Nope, nothing doing. So of course I’m up all night and manage to get into a deep sleep as my attending doctor crashes in my room, flipping every light switch on, that was available (I had the light blocker shade down to keep it dark (for my migraine’s sake). She shakes me out of my, what could have been, amazing sleep with her LOUD voice of pointless questions, spoken at the slowest pace ever. I’m sorry doctor, surely you understand you just woke me up in the worst possible way, I’m still trying to even understand where I am and what I’m doing, I am not going to be answering your questions. Oh, I am also not deaf nor mentally slow. Stop talking to me as if I was, kthx.
My GI doctor makes it in on Monday (I was there since Saturday night) and he asks are they giving you anything for pain? Um…NO! Nothing. He’s ah well let’s get that fixed. He didn’t offer much but he did what he could without further messing up my intestines. Yes, that’s right – I was without ANY pain medication for a few days with a MRSA infected incision just milimeters away from my spinal cord and a non-functioning gut that just kept expanding as air kept getting stuck.
By now they believe me about my back pain and how I believe it is infected because it soaked straight through my gauze dressing and onto my bed (that never got changed…Ellie sheds, enough said). No one in that hospital has even seen one before so they basically denied any responsibility for it or its care. It would be 2 more days of hell before they finally decide to take it out. It was the most painful thing to have in, due to the infection.
Even from just looking at it bandaged up you could tell it was infected. I, myself, had a temperature of 103 and my back, where the stimulator is taped, was so hot my doctor asked if I had been using a heating pad. It was also very swollen. So their pain “doctor,” the word doctor used very loosely here, came in, ripped off the tape holding down my machine and then starts to pull it out (my leads were long as relief only came from them people placed up near the cervical spine). I asked if he would at least wait for me to get my nurse to push some toradol or something. He laughs, this won’t hurt – it’s like getting stitches out. But it is infected, I said. He says, “no no no, it isn’t infected.” Yes yes yes, it is infected and hurts worse than anything. Is he listening as I say this…no. I should have stood up to him. Let that be a reminder for all of you, do not let nurses or doctors boss you around. Don’t let them do things without you knowing exactly what it is and you come first. I should have refused to turn over on my stomach until my nurse came with pain medicine, but I didn’t. I was lucky that one of my best friends was there to help comfort me as he pulled out the long leads. She also took pictures. Lol, I saw her whip out her iPhone and asked if she was taking pictures of this!? She nodded and I was like, well use my real camera then!
She was such a trooper having to watch that happen and to give me so much comfort. Well, anyway – it was out and I will say that most of my pain was gone and I was finally resting. Then jerk hospitalist comes walking in to look at it. He asks me to turn over so he can “look” at it and I politely refused until he stopped asking and started demanding. So I rolled over in complete agony and he starts poking around. Oh man, so much for feeling any better. Way to mix the pot and stir things up again, Mr. hospitalist. You rock!
They did culture it but it would be a few days before they’d know exactly what it was. They started me on two types of antibiotics and at the end stuck with one, Vancomycin. Days go by and my GI doctor comes to visit again. He sees I still have the NG tube in and insists on removing it. He’s pretty strong because I held it in as best as I could but out it came. Hurts just as bad going in as it did coming out.
With the NG tube out and antibiotics 3 days in, my hospitalist, despite not fixing my pain and not accomplishing any goals due to this pain (standing without support, walking, etc.). I was completely against discharge. I called up my GI again – sorry for calling you all those times, doctor, but you are just THAT awesome – and he said that I could go home any day I feel comfortable with. Well, today wasn’t that day and after a lot of arguing and such, I still ended up being discharged. I had asked for a social worker as soon as I woke up that morning because I felt I was not treated as I should have been treated. She did end up making it right before my discharge papers were made. She was pissed at how I was handled, especially the medication part. I said that I understood if they were short staffed (definitely not the case I later learned) or their nurses just can’t juggle this many patients, but I still do not accept that as any sort of excuse to neglect me. The social worker said that next time I go somewhere to be admitted or even at the ER, find a social worker to be your medical advocate. They can help you and will do anything within their power to keep the doctors and nurses on their toes.
Back Home…it was nice
I get home and my homecare nurse comes by with more TPN (as I was in the hospital when my normal deliver would go out), supplies and my new IV medication – Vancomycin.
I showed her a rash I didn’t find until washing up before I got wheeled out of the hospital. I didn’t think anything of it until I mentioned the rash to her who then called my doctors. They all were aware of me and the infection I had (apparently when something bad happens to regulars, they talk to other people about it) and said to take benedryl an hour before taking the Vanco. If the rash didn’t improve (be gone is what it should have been) by morning, I was to come back in. And as a good girl, that’s what I did, but not Evergreen this time – I’m still shocked they sent me away with the ileus and MRSA infection.
ER again
So I’m in the exam room and they want to know why I’m there. This was going to take awhile. I first started off with the rash and how I was told to come back for that. I then showed them my back, letting them culture it and asked for it to be re-bandaged. I was also rolled in for another CT and x-ray. Ileus looked better, no NG tube. However, the results from the culture taken at the other hospital location came in just an hour before I came to the ER. My AMAZING attending actually found it and came in to tell me the not-so-good news. I sort of figured it out when my husband and father came back from lunch dressed in gowns; I had MRSA.
He talked with the hospitalist that released me about my rash and he STILL manages to be a jerk saying, “there really isn’t a reason to bring her back in, as it is probably not even related to the Vanco, but we’ll accept her if you feel she needs admitting.” So he goes and calls the infection disease (ID) doctor and he told them to transport me to his hospital immediately. Fever and resting HR of 140 on top of everything else, they once again, readied me for transport. This time it would be longer but the attitude of my ER doctor was awesome. He wanted to step back and have a real plan. So that’s what we did. Ambulance came and they let my dad come too. I slept most of the 45 minute drive (thank you traffic).
Hospital Stay: Part II
This one, I was told, would be short. ID looked at my wound and then changed my vanco to IV daptomycin. And guess what happened? A few days after the vanco got out, my rash went away! Amazing how that works out. I also was surprised by the service. My attending doc had ALL my medicines (regular and IV special ordered as well as TPN) already ordered, before she even came in to see me! They were all so nice and had everything under control. I was relaxed for the first time. And since my ileus was resolved, they allowed me pain medication strong enough to give me one night pain-free. I will always remember that feeling and hope to have it again someday, even if it is just for one night. But yes, this was a short stay. My ID doc came in the morning to check the infection and to see if anything new popped up and said I could go home that day! I felt so much better going home that day. They made me feel comfortable with myself. Thank you Swedish Hospital Medical Center: First Hill! You guys rock, keep it up.
Wrapping it up…whew
On the same day I was discharged for the second time, my father had to leave. He had arrived the day I was discharged the first time. Overall I learned:
Stand up for yourself as you know more about your body than anyone. Don’t be bullied by nurses and doctors.
Remember to take some responsibility for everything the doctors and nurses do, refer to my Imitrex IM situation, they make mistakes too
Get a Hospital Social Worker if you know you’ll be in the hosptial for a few days. They will help be your medical advocate and keep doctors on their toes in order to make your stay run as smoothly as possible.
Trust yourself. If you feel like something more is wrong then keep looking for someone who will listen. I had to go to two different ERs before someone would listen and DO something about it.
Still try to smile and enjoy being alive =)
Anyway – that is why I have been in and out of the Internet. The lead incisions are still swollen and there is a slight lump that I must have another ID look at so that I can be cleared for surgery. Yes, I have been approved for the permanent spinal cord neurostimulator. Everything on their end is ready, I just need to pass the ID test. I’m excited. In case I didn’t talk about it before, three days before I was admitted, I had a spinal cord neurostimulator placed temporarily in my back. I control it with a remote, unlike the gastric one which requires a doctor to change it, because simply standing up can move the leads on your spinal cord, changing the frequency and voltage. Those are the two things you can move up or down. I think I’m his first patient to ever have one placed for generalized abdominal pain but as soon as he put it in the right spot, I could tell a major difference. It was great. My ID appointment is on Tuesday. Because of all that has happened in the last few weeks, I may have to push my surgery date until after the holidays. As we will have family. Not something you want to be bringing them to – your hospital! Nor do I want to be in the hospital on Christmas either – did that last year. Not fun. But it is still coming up soon. If I hold off until the end of the year, I’ll have more time to recover and have that recovery time close to my doctor should anything go wrong.
It has been a long time since I have had the energy to stay at my computer long enough to write anything of worth on my blog. I trust those who suffer from any sort of chronic illness understand. I have been in the longest flare-up of my life. It has been complicated by week-long migraines that completely paralyze me in pain; pain that makes my ever so constant nausea progress to vomiting. The only thing I could do to make it bearable was to head to the ER for IV pain medication, fluids, anti-nausea medication and at times, oxygen. Four hours later, I would be sent home, only to return the next night, requiring the same treatment.
They’d preform more tests, only to come up empty handed. I had CT scans, X-rays, lumbar punctures, and blood tests. I would continually ask what to do when another attack came, looking for confirmation and assurance that what I was doing was right, and they would say just to come back. So that is what I did, many, many times; thanks to my husband who drove me to and from the hospital day after day.
Along with the migraines I was fighting, I had GP flare-ups. I am not eating anything, save for sherbet ice cream at night. TPN is pretty much my sole source of nutrition. I run 2000ml over 20 hours. I find that being on more of a continuous cycle helps a bit with the migraines. Not a whole lot, but some. It does not, however, help with flare-ups. On the scale of uselessness, I live in a continual state of 8. I manage that fairly well. When it bumps up into 9, that is when I have problems and start breaking out medicine and patches to try to control it in order to avoid a trip to the ER. I have lidocaine patches and oxycodone for such cases. I’m also taking ultram 3x daily and use fentenyl patches for pain. I have liquid phenergan and IV zofran. IV zofran is daily and the liquid phenergan is when the IV stuff isn’t working. That is sort of how I play things, always having a back up. I want to know I did all I could at home before I rush myself to the ER.
Anyway, that is, in a nutshell, why I haven’t been updating my blog. I feel I have things more under control for now, and will be on more often to write more about my battles with GP and overall life. I will be making my first trip outside the state on TPN next week, so that will be quite the adventure. I’ll be sure to write about it, in case others are planning something similar and are curious as to the process. I’m nervous about making it through security at the airport. I haven’t traveled since the new rules went into place. I have a gastric neurostimulator on top of a port, so I imagine, getting through security won’t be much fun (on top of the syringes and other TPN materials I need to bring with me for the day). That’s for another entry. Hope you all are having a great Father’s Day and a good tummy day as well! Take it easy!
Christmas morning landed me in the ER at the closest hospital (which unfortunately happened to be Evergreen – I do not recommend this hospital if you actually want to ever leave in a timely manner) due to fluid retention from the previous day’s fluid infusion. When I came in however, my bloodwork wasn’t quite right, I was underweight, dehydrated and malnutritioned. They also did a CT scan with contrast, when I arrived, showing dilated loops of bowel, suggesting blockage. It was then they diagnosed me with CIP:
Intestinal pseudo-obstruction (false blockage) is a condition that causes symptoms like those of a bowel obstruction (blockage). But when the intestines are examined, no obstruction is found. A problem in how the muscles and nerves in the intestines work causes the symptoms.
Pseudo-obstruction symptoms include cramps, stomach pain, nausea, vomiting, bloating, fewer bowel movements than usual, and loose stools. Over time, pseudo-obstruction can cause bacterial infections, malnutrition, and muscle problems in other parts of the body. Some people also have bladder problems. (Inspire Support Group)
Well good, a new diagnosis that seemed to help me understand a bit more as to why sometimes I had difficulty feeding through my J-tube. I thought my motility problems were only in my stomach, come to find out – they also involved the rest of my intestinal tract as well. Great! Knowing is better than not knowing in this case, I suppose.
My own Christmas Tree…It twinkles in the lights of the cars, buildings and blinking lights of my pumps
So new diagnosis + old diagnosis + newly inserted Picc for TPN…Set me up, sign me out – I’m ready to go home. I knew that chronic illnesses like GP aren’t cured in the hospital, if at all, just managed so I was expecting them to patch me up and sent me home. NOT the case. They seemed to want to keep me there as sort of a project, an experiment if you will. They were not at all familiar with GP or CIP and were working off a day by day plan. I was lucky to see my doctors each day by 6pm if at all. The hospital was beautiful and the nurses were nice and the doctors seemed knowledgable but the management was HORRIBLE. Let’s just say I won’t be going there again. However, late at night – their understaffed hospital allowed us to sneak in my 70lbs Bernese Mountain Dog puppy, Ellie to visit. Pets make everything feel better in ways doctors and nurses never can.
After I had enough of their poking and prodding with no results to show for it, I called Dr. Patterson (whom they had not even contacted during my entire hospital stay) and told him what was going on. I asked him if it was ok if he talk to the hospitalist GI, and he agreed. A few minutes later, she walked in and told me I’d be ok to go home the following day on TPN. I felt sort of bad because I knew they wanted to help solve my problems so badly and I knew they couldn’t. But I was ready to go home. I already missed Christmas and a snow storm…yeah, I was ready. So December 31, 2010 I was discharged from Evergreen Hospital, never to return again.
Different dressings of my PICC which was horribly placed at Evergreen Hospital, thanks guys!
Setting up for my new evening routine. Don’t let people tell you it is equivalent to brushing your teeth because it isn’t, at all! You get used to it and you get faster, but it still takes time and you still have to be super careful!
I made it about a week at home before pain started kicking up to levels that were far beyond my capability to control them. With the CIP diagnosis and GP, Dr. Patterson took me off all pain medication leaving me with only Tylenol. Haha, yeah – that’s going to help. Maybe if I took the whole bottle at once, it might take the edge off enough to walk. I promptly called up Virginia Mason (my comfort zone) and asked for the doctor on call. Who do I get but my Interventional Radiologist, Dr. Siegal. I told him I was experiencing excruciating and debilitating pain in and around my j-tube that radiated to all parts of my abdomen to the point of not being able to use it for the past several weeks. He advised me to come in to the ER and see what could be done. My wonderful husband took me to the VM hospital 30 minutes away. There they drew blood and tested urine and blood pressure. My blood levels came back abnormal, such that they could not let me leave. I was admitted again on the 8th of January. I was given Dilaudid, sleeping medicine (as by this time, it was quite late), and slept it all off.
Early morning my doctors did their rounds. I was not used to this. Doctors? You mean, I don’t have to beg for them to come see me and they are actually here before 6pm?! WHAT IS THIS PLACE. I love you VM. My potassium levels were low, hematocrit was really low, dehydrated and still malnourished. Basically, I felt like crap. The dilaudid was wonderful in controlling the abdominal pain and the rolling migraine that seemed to keep me company during my ENTIRE stay. With low hematocrit levels, they felt I might be bleeding within my intestinal tract (reason for pain). They scheduled me for a colonoscopy and endoscopy for the next morning. Yep, that also meant I had to do the prep. Why? Don’t know. But I did it. I put it through my tube and too fast apparently as it backed up into my stomach and eventually I puked it all back up. Not just the clear GoLytely, but stool. Yeah, not pleasant. Determined, I got the rest of that gallon down and had a successful couple of scopes with normal results. Unsure of where the bleeding was coming from, they simply infused me with iron.
Since VM is the hospital Dr. Patterson left for Swedish, they know him well and they know that I still see him as my GI. My main concerns after my blood levels were stabilized somewhat, was the abdominal pain. They were not going to even go there. I told them Dr. Patterson said to pull the tube and they are like…”We’ll just let him do it.” So I was released on the 12th of February after getting stabilized and saw Dr. Patterson the next day.
When I went in to see Dr. Patterson after being discharged, I was still in considerable amount of pain. He gave me two options: take the whole tube out or deflate the balloon and see if it is just the balloon that is causing the pain while taping the rest of the tube to the outside of your body. I was not a fan of option 2. He sent me for x-rays anyway. After thinking about it that night, I called him and told him I just want the tube out. It was a hard decision as it took so much work just to get it in. But it caused too much pain and I wasn’t even using it, it wouldn’t be logical to keep it in.
He told me to see my PCP and ask her opinion and have her look at it and have her draw some blood. So I did but she didn’t change my mind. My mom was in town but she left early early Sunday morning so I wanted the last day, Saturday to be free from medical stuff, appointments and hospitals, even if I was in pain – I’d have a smile on my face.
Once she left (1/16/11), my husband took me to Swedish’s ER where I told them everything stated here and luckily they found Dr. Patterson and luckily Dr. Patterson (still new to the building) found me. I told him to take it out. It was already extremely painful so I knew him taking it out would just suck even more and it did. As soon as it came out, he knew where most of my pain was coming from. When my button was put in, the tube part wasn’t cut short enough. It ran through nearly all of my lower small intestine and because it was so big, it would nearly immobilize it. When it needed to move to push food through – that’s when it hurt. Plus the button itself got stuck between my ribs so whenever I would breathe or when my intestines moved, it would pull on that button causing waves of pain. So it is better out. Maybe down the road, I’ll be able to get another placed – we’ll just have to see.
So that is my little story as to why I haven’t updated in awhile. I just found some time and energy to put this up and even this took a few days. And in those few days my line might have become infected putting me back in the hospital. Happy thoughts! I hope everyone is having a good tummy day and thank you for your thoughts and prayers!
In remembrance of the two close friends I have lost this week. They are super important to me. Makes this disease and all others more real. How many more people must die before they take it more seriously?
