My Central line

       Lets start this one from 7 weeks ago.. 8 weeks ago it was decided that I needed a TPN line; also known as a central line. What this is it's supposed to do for me is force my body to absorb nutrients in hopes that I will gain weight and all in all just feel better.

       I was told check in time is 6:00 am.. Holy Moly that's early! But the sooner it is the sooner I get to eat. :) As Bryan and I are driving around the hospital trying to find out where to go we finally get directed to the correct place.. the cath lab.. The nurse takes us back and as I get ready we seem to always be a ray of sunshine and always make light of the situation we are facing, we'd rather laugh than be quiet and wonder about all of the "what if's". After the nurse is done doing the "serious stuff" we joke around some more while waiting for my doctor to come in. Enter doctor no personality! She says, "Do you need this for chemo? This is the type of line we use for cancer patients" I look as baffled as she did stupid, I respond, "No I need it to try and help my body function" she says, "have you seen what the procedure is and what I actually put inside you?" I respond "I have but I would like to see it again" she pulls out this:

This is the whole thing that's going inside. Kinda looks like a very funky worm. haha. As she proceeds to explain how she puts it in and that "if" I wake up during the procedure she will use a little more medicine to "make me comfortable" and finish said procedure. Dr. personality then says, "Any questions?" Um YAH a LOT! but used to this so I just say, "Nope". As the tech came to get me we were just idly chit chatting on our way to the procedure room, we get to the hall right by the room and he asks, "Would you like me to put you by the window so you can see out while you wait?" "Actually yes I would" He parks me by the window, as I look out I see a life flight and a team who has just unloaded someone and was now cleaning out the bird (helicopter not actual bird haha). My mind went to "well that's a bad day for someone". I sit in my little window letting my mind wander to where it would like to go. I watched cars go by.. Ambulances come in and leave.. People walking.. Right as I was focusing back on life flight a man came and asked me if I was ready.. "Is anyone ever ready" that stumped him which got me no response.. win.. personality is still with me.. We go into the procedure room.. Two nurses to the right of me, setting things up on a table, I hear music playing (not my type) and over hear two of them talking about this person's music choices and how he got the new Imagine Dragon's soundtrack. Then I'm asked, "Can you help us switch you beds?" um, yes I am not immobile. I look to the left at my uncomfortable "bed" and scoot over for them. From this point I see two more nurses who are buzzing around me like little bee's, attaching this and that and chatting.. To my left I see 4 computer screens and at my feet theirs a large window with chairs behind it and a clock above said window. Am I in some form of training room? My thought was quickly interrupted when a male started putting up some form of a curtain so I can no longer see out.. Panic has now crept up and found me. I don't like not seeing, I want to see who I hear talking and what time it is.. "I need to undo your gown so we can start sterilizing you" WAIT I'm supposed to be asleep for this aren't I?? Ice cold liquid is what I felt after he took part of my gown down (please don't put it to low.. I don't want to be awake knowing they see me).. "so are you getting this to help with chemo?" again with the chemo... "No, I am getting it because I cannot absorb any nutrients and need some medical help to get some" "oh.. okay" "Ms. Armstrong is all prepped, grab Dr. personality". The right side of me is so very cold, the left side so hot. I'm awake, why? I thought she said I wasn't going to remember or feel this.. "Okay Tamarra we are now going to start some medication, you should feel funny and if you feel anything let us know and we will give you more" I nod with tears. I knew she had a knife.. I knew she was going to cut me.. I was AWAKE! The next thing I hear "Tamarra are you okay, we will stop for a minute and give you more meds, were almost done" crying all I could do was nod.

       I woke up itching, itching so much it felt as though my whole body was just crawling.. Benadryl was given and helped nothing! I'm hungry, I hurt, I itch and I'm beyond grumpy. Can we just go home? No I have to stay for an hour and a half to make sure I'm okay.. Silly nurses, I know exactly what to say to get to go home before they want. And so, we were on our way home sooner than the hour and a half.. Sneaky I know ;)

Let's now move to home care..

       When I got home the pain in my arm was constant and very painful, was for sure my biggest complaint. I always do my feeds at night so I'm not attached to my "leash" all day. A nurse came over on Wednesday, I had gotten my $1500 worth of supplies for the week, (yes you read that right, for a week) inside the delivery I see, 4 bags of feed that have to go into the fridge along with two different types of vitamins that I have to inject into the bag, I have 10 syringes of saline, 5 of heprin, a glucometer (I now have to check sugar levels), alcohol wipes, hand sanitizer and needles. That box was a realty check for sure. As the nurse is going over everything I cannot help but feel overwhelmed, sad, defeated, tired, angry.. She's talking to me as she's doing everything, after she has me all hooked up and answered questions, she left.. and I'm left with this..

 

 



After being hooked up for 2 hours I am to poke my finger to check my sugar levels.. This should be easy enough, I've done blood sugars on a ton of patients, nope it was not. Come to find out, my fingers do not bleed, so I ended up poking my fingers numerous times so's to get enough blood to register on my glucometer (my goal areas are 70-130) I was right where I was supposed to be, YES! At the 4 hour mark I started getting really sick, light headed, nauseous, dizzy, clammy, shaky.. Something is wrong, I know I shouldn't be feeling this way. I should have known my body was yet again going to show it hates anything good for me. By 8 am I was throwing up.. That's not supposed to happen.. WHY ME?! I shake my head so many times and ask that question it gives me headaches. I called my dietician after 3 days if this to tell her what's going on, she immediately tells me to go to the hospital to be checked out, so, I did.. I was told nothing is wrong and since theirs no resistance when they pulled blood and flushed I was fine. I asked the doctor if she could do my labs since I was there she said no. Then I asked if she could please put on a hyperalergentic dressing, she tells me "oh no I cant, we do not have those in here" WHAT?! Am I not in a hospital? You mean to tell me I am the ONLY patient here who's allergic to adhesive? Whatever! Pissed I call my dietician and ask if she would see me really quick since I was at the hospital, she didn't hesitate with her answer. After visiting with her and telling her what's happening she was puzzled as to why the doctor upstairs did not do a "placement" x-ray. I was walked down the hall where I was then getting an x-ray. As I walk in I see two people drinking contrast and think "man I am so glad that's not me", it may be a horrible thing to say (which is why I only thought it) but I have drank enough for a life time, I am a walking glow stick at this point. As I am waiting I sit and just think, not about anything in particular just thoughts.. random thoughts.. My head wants to be logical, my heart practical and my soul angry. Why am I so hard for people? My results come back as great so placement is fine, they need to tweak the formula..

 

       My first blood draw and de-access is on Sunday, I was nervous not knowing how it was going to feel. Blood work was awesome she drew it right out of my port (no pokes) sweet! That was easy, BUT, I know this needle which has been inside me for 5 days is time to come out. What is it going to feel like? Is it going to hurt? Am I going to bleed? She pulled that out like she was a sneaky ninja, bravo lady. Only a pinch! After vitals and a look at the bruising she left. I thought, well that was easy enough.

 

Week 2: I get a call on Monday from my dietician which is when we go over blood work, signs, symptoms, weight, temp and sugars. Which off of all those they adjust my bags accordingly. Going to lower my Lipids (fat) and try a new dressing (I couldn't stop itching) my chest is still very bruised but felt better without the needle inside. My supplies show up on Wednesday (excited this box was $200 less than the week before) going through my shipment it baffles me on everything it takes to have a TPN line in place. Needles, access kits, alcohol wipes, tubing, new pump, vitamins (I inject these on my own) and 4 bags of formula. Nurse calls "Hi Tamarra I'm on my way to access you" My heart starts racing, screaming it's not ready.. What's going to happen? Is it going to hurt? What about my bruising can't we let my chest heal?

 

       Theirs a knock on the door.. HIDE! As I put on my brave face and open the door she comes in, I direct her to the kitchen as I have already sterilized it. She's setting up my sterile kit and talking but honestly, I am not listening. "Here we go, poke" YOUCH! "all done all done, you did great" um, if I did great I'd hate to see those who didn't. She finishes vitals and typing in her stuff then leaves. New bag, more pain but manageable. I freaking hate blood sugars. I am beginning to run high in sugar but my body seems to kick in the natural body insulin and I level out by the morning. Woke up sick, again, and so very very itchy. Throwing up, hot/cold chills, dizzy, nauseous, migraine.. I call.. After blood work this week they will try my bag with no Lipids (fat) and see if that is why some of my symptoms are happening and they'll change my bandage to a different one.

 

Week 3: New box, new dressing, new meds plus 3 new added ones (they believe I have gotten bag induced diabetes, which I know do insulin for) My new box.. $1600.. That's enough to make you stumble.. $1600 for a 4 day supply shipment? Jeez no wonder us sick people have such a hard time going to the ER or doctors. This time the access didn't hurt so that's good. This feed went differently, I felt as though I was itching so far inside no mater how much I scratched I couldn't get it. My whole body on fire, my chest itches and burns. I call home health, again.. A nurse is coming. She was here literally 4 minutes, she did vitals and a quick blood draw to see if she got any back (which she did) she says "you look fine to me, have a nice night" and she left. Baffled and questioning myself for calling, "am I really that big of a wimp?" "Am I being over sensitive?" Nope I know I am not, I know something is wrong. but I am not calling stupid home health again that's for sure. 

 

       My nurse shows up Sunday for blood and de-access. Pulling my bandage off felt as though I lost 4 layers of skin with it. My nurse asked why I let it get to this point. Um I didn't, I took the steps I was told and the nurse did nothing when she came out. My chest itches. It feels like shingles meets a thousand mosquito bites in places I cannot itch. My body is on fire..

 

Week4: Dietician called and asked how things were, she was shocked and asked me to send her a picture, which I did..

 

 

She calls me.. "Wow, okay, here's the new plan, we need to give you an IV and have you do steroids and Benadryl, we will no longer be putting lipids in your bags and we will not use your new dressing, we will try new ones. I will call you in a few days".. I don't want an IV.. But since I do not absorb anything taken orally, I have to have one if I am going to get feeling better. Later that night a nurse show's up (I call him Lurch) He asked, "Are you an easy stick?" Yes I am a very easy stick, I do not roll, I'm valvie with scaring but you should get one, just please don't put it in my ac. "I will try to put it somewhere else if not then I will have to go there" ugh! butthead! Let me tell you, when you are a hospice nurse I believe NO ONE should be a hard stick for you, you have extra training so it's not hard and you can just get in no matter were. This guy.. NO.. He fished and fished and rolled me and finally forced it in (fishing means he's keeps pulling the needle around inside my arm trying to force it into a vein) tears almost instantly. Karma came and got him though, when he flushed me he didn't cap the other side so all the saline he pushed ended up in his lap and yes, I laughed. HAHA Idiot! He asks for my meds which we give him.. He looks at my steroid and says "huh I've never seen this, do you know how to do it?" No way is this idiot serious.. Oh he was! He was hitting it, shaking it, squishing it.. Staring at it as if it's so foreign it shouldn't even be in this country yet. Then he finally figures it out, next question "How do I draw this out?" WHAT?!?! Lurch is seriously pissing me off now.. Steven tells him to take the top off, duh! Lurch says "It says I have to take 3-5 minutes to get this in, I hope it doesn't burn" Bryan was looking at him not only with anger but concern, Steven the same. Now it's Benadryl time.. HOLY MOLY that burns!! Tears again.. Light headed.. Woozy.. Loopy.. Bye Lurch, thanks for that..

 



 

 



 

My arm hurts :( 6 hours before I have to take the second dose. Second dose hurt just as much as the first but now I can get this IV out! After letting my body heal I would resume feeds in a couple days. At this point they will never again add Lipids or use that specific bandage. My arm hurts, WHY does my arm still hurt? Then my medical knowledge kicked in as did my memory, I've got blood clots.. Awesome! Thanks Lurch, I knew you fished. I call home health and my dietician to inform them I've got clots.. Aspirin and heat.. DUH.. Sometimes people have a way of making me feel dumb and naïve. Which I am neither. I knew I was going to get them, not only have I had them before in that arm but when you're "fished" you have a higher chance of getting them. More things for me to be angry at. I am beginning to wonder why I'm doing this crap if it is constantly annoying and just a pain.

 

                                                                 *Summary*

 

       I have had this port in for 7 weeks now, I have had so many different complications, some that stump everyone and some that are so stupid if they would have just listened to me I probably wouldn't be having all these bag changes along with all the other issues. It has taken me a long time to write this one, sorting my feelings and the way I wanted to word things. I do these blogs for numerous reasons, the biggest is; it's a form of therapy for me. This is a place where judgment isn't said, where I cannot see peoples faces when reading what I've written, I do not have to constantly feel as though people are not looking at my chest when I'm talking (no it's not my boobs they're looking at). Seeing people start at me, silently (and sometimes verbally) judging me. I can hear your whispers, stupid! There are times I do speak up; those are day's I am at my strongest point. The times I am weak are times I will make sure either to not leave my house or I have a shirt on that will cover my whole chest.

 

       I have thick skin but I also have heartache that comes with being sick. I did not choose this for myself, it was give to me to handle. My close team players know the lies behind my words of "I am okay", they know the forced smile when I am having a really hard day but am pushing every limit and boundary I can. The sadness and guilt I feel, they see. The burden I feel, they see. How at times I have no clue why they want to stick by me, I am not nice when I am sick, these teammates normally, do not believe I am angry at something they've done but I am angry at how I am feeling and end up taking those emotions out on them. I ask so many times, "Why am I doing this? Is this really helping? Is this the life I will feel and live forever? Will my kids remember more good than bad?"

 

       I know I've peaked some questions: "How much do you weigh?" as of yesterday 102, for my new readers that is a huge bonus this is a number that my whole medical team will accept but still seem to find a way to lecture me about it. "How do you do it?" Do what? Live? I live the same way you do I just have many days where I cannot do barely anything, I can barely walk to the door before I am so exhausted I will just lay down. I always try to be a part of my kids' happiness and activities, they suffer a lot from me being sick.. guilt.. Mom's sick again.. No we can't go, our mom is sick, we can only go if you pick us up.. I hear these and feel as though I've failed them. I am as strong as I can be when I am around them, I hate them worrying. I get asked, "Do you use your illnesses to get out of things you don't want to do?" Heck no! If I can do them I am going to, I'll take any offer of doing something if it is at all possible. I enjoy doing things, walking around, going on short vacations (which I need as often as possible) let me do some clarification about "vacation"; my vacation is also classified with the "I need a brake from life". Bryan sends me away every 2-3 months for 3 days, Steven and I go to Disneyland, that is my happy place, a place I do not have to be a mom, a wife, a nurse, a maid, a taxi.. It's a place I can go and just reset myself, it gives the kids a brake as well. Bryan runs circles around me when it comes to 'single dad' I have no clue how he does it. "What and how much do you eat?" I eat a lot of things, but there's more things I cannot. I eat about 2 happy meal size meals a day (yes its not a lot but keep in mind I have no stomach) I have numerous snacks a day ranging from small munchies to another meal, even though I usually have just eaten. Bryan and Steven laugh at me a lot, we get in the car after eating and I've worked through my choking and full feeling and tell them I'm hungry.. I've become Rolly off 101 Dalmatians, "I'm hungry mamma, I'm hungry, I really am". I apologize a lot. It takes me double to triple the time to eat which hits another sore spot. 'She must be anorexic cause she's not even eating' No you couldn't be farther from the truth, I am a binger for sure my dysphagia and esophageal disease make it very hard to swallow and eat. "Does it hurt?" I assume it's usually about the site and yes, it hurts. When I am accessed moving my right arm is limited, it's like the needle is in my muscle even though I know it's not. I hate Wednesday's those are "access" days..

 

                                                                 *Wrapping it up*

 

       I know this blog was long and probably boring to read. But for those who really are curious about my central line and what I feel and go through this is a pretty good description. I absolutely could add more but I chose (for now) not to. I am very stubborn, push a lot of buttons, do many things I shouldn't but am still making the best outta life that I can. My energy level has not changed with these feeds nor has Freddy, he's still just as mean and loves to attack me at night. I power through a lot not because I 'have to' but because I choose to. So to sum things up: I have gained weight, my energy level is the same, my fear of food is the same, my amount of eating has lowered, my esophageal disease has gotten slightly worse, the belly pain is getting more constant, my system is still fighting my meds through my line but some are making it through, physically I am told you can see that the formula's are helping, emotionally I feel sad, angry, frustrated, happy then start all over again.

 

       I have many people who post inspiring things for me to read and help out not only me but Bryan and my team as well. Everyone needs those few people to be there no matter what and we have those people. I'm so grateful for everyone who's helped out, not only by donations but support. Support in this ordeal is needed by everyone who's close with me. Support is my teams reset and helps them feel as though they have someone for them. They to feel just as frustrated but do not tell me about it because they do not want to "bring me down" or burden me with their own feelings. What they don't realize, I can read them like a book! I have intuition that would scare most. No words can be spoken and I already know. So to those who read, I hope you know that I read every single comment and post on social media, I may not respond to all but I read them all. Perfect strangers I've never met even send positivity and support. Gratitude is something everyone should have, it makes life better. You ALL are part of my "team", you ALL make me smile and help me through my trials, I thank every single one of you!

 

       I am sure I left out a lot or some of what I've been through these last 7 weeks so if you have questions ask, please do not assume or judge me and my situation. If you talk about me, never make it negative, I swear it will get back to me or I will already know. Read these to get to know me, then you'll have more incite and hopefully less things to wonder about. Make the best of every day, yes you'll have bad days and those are the days you need to smile the most. Find a hobby to get you out of your fowl mood, your team needs you even if you don't feel they do. Not a day goes by that I don't laugh, I don't smile, I don't hurt. I will never say I am perfect but I will always be happy. I can see your faces while reading this "Man she is all over the place" which makes me smirk, think of it like this; I write the way I think and I think a million things which only part of those come out in words. I jump conversations like a cricket who has restless leg syndrome. If you can follow my story, you can smile with me now that you know I know I've confused you more than once and have probably made you go back and re-read what I've written and that I to have re-read and changed before I posted.

 

       ALWAYS laugh! ALWAYS smile! ALWAYS end the day positive and let the bad go. NEVER go to bed angry or with an empty tummy (empty tummy's create grumpiness trust me). You ARE who YOU want to be, don't ever hide who you are or change because someone wants you to be someone else. I've embraced my inner beast and in fact, allow that beast to come out and play.. She does come out of nowhere though, it does take me a bit to bring her back inside. And ya, just picture my inner beast as a yo-yo, its true and a perfect analogy.

                                                       My happy place, what's yours?