Category: TPN

Why Sepsis Should Be Taken So Seriously

Septicemia

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Sepsis. This is a medical term that I knew nothing about, hadn’t even heard of, until I was diagnosed with it back in 2015. Sepsis is a toxic reaction, a poisoning of the blood, to an infection found in your body and can lead to death (Mayo Clinic). In fact, 1 out of every 18 deaths in Canada is due to Sepsis (Sepsis Alliance). There are more deaths due to Sepsis than Colorectal and Breast cancer COMBINED in Canada (Statistics Canada).

Last summer, if you know me or follow me on Facebook, you would know that I ended up back in the hospital twice due to an infection in my central line – that was Sepsis. The bacteria started in my Hickman, which my nutrition travels through and goes to my heart. Then my heart pumps my nutrition throughout my entire body through my blood. I wasn’t in the hospital just because I was unwell, but because if left too long, I could have gone into Septic Shock and died. The mortality rate for Sepsis increases 8% EVERY HOUR that treatment is delayed (Sepsis Alliance). Sepsis is that serious.

I had decided to write about Sepsis after one of my fellow SBS warriors was admitted into the hospital last week due to Sepsis. Many people that I know that are on TPN has had Sepsis before. It’s very common to those of us with central lines and unfortunately an ongoing battle that we will forever face.

I have been told since my first day leaving the hospital with my line that if I have a fever that I MUST come into the hospital and be checked for infection. It’s not something that I’m willing to play with. It’s not worth risking my life. Thankfully, every time I have been to the hospital with a fever, they’ve taken it very seriously and at least isolate me, keeping me safe from any other infectious diseases that may be in the air.

Why did I choose to write on such a serious and some may say morbid topic? Because this is my reality. Sepsis is something that I, and many others with a Hickman, fear. This is why I’m so paranoid about keeping my line clean. I can’t go in public swimming pools or in the lake for a swim. I have to keep my Hickman site covered at all times. I have a sterile area in my bedroom for where I connect to my TPN, and only a Registered Nurse, my husband or myself touches my line. I’m constantly using hand sanitizer. I have had to become a germophobe to ensure that I stay healthy. Yet another part of my life that has severely changed since my diagnoses.

A huge part of why I do this blog is to educate, and this is what I’m doing today. I’m wanting people to know about another part of what I struggle with, with my diagnosis.

Here are the symptoms of Sepsis:

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Educate yourselves. Sepsis isn’t found just in people who have central lines or suffer from a chronic illness. It’s serious, let’s treat it that way.

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4 Reasons Not to be Envious of the Chronically Ill Life

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Although I believe that these things are said in good nature, people often comment on being envious of different aspects of my new life, and these things, to anyone in my shoes, come off as quite ignorant. These are on the same level of frustration as platitudes for any of us living with a chronic illness. We roll our eyes at them, but really they become quite exasperating after a while. It makes me wonder what people really think I do with my day.

I’m sure we’ve all seen these memes that were really popular a few years ago:

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I don’t actually spend my entire day, flopped on the couch, eating popcorn and loving a lazy life. Here are a few of the comments I’ve received over the last couple years of what makes people covet that I live the chronically ill life and they do not.

  1. “You’re so lucky that you get the perfect mix of calories and vitamins! How convenient!”

I wonder if when people say this, if they realize why I need an IV bag with all my nutrition in it. I’m missing an entire organ. A very large one at that. I have to now spend twelve hours a night, five nights a week, attached to an IV bag. Yes, I get my vitamins and calories. No, I don’t have to worry about eating the perfect diet. But this really isn’t something to want. It baffles me that people would actually seek these out. It’s really not something to want. Eat right, stay hydrated, and for the love of all that is good and holy be thankful you have control over your own nutrition!

  1. “You’re so lucky that you don’t gain weight!”

I miss working out. I miss being able to eat anything without any significant consequences. I wish I could go back to watching what I ate. You’re right, I don’t gain weight from eating. But the issues I have from eating literally anything and everything are quite brutal. If I don’t want to have those consequences (and I’m hoping that you’re all smart enough to figure out what the consequences of eating food without a small intestine does to your… uh… visits to the lavatory) I have to go without eating anything. Those are my two choices. Chronic diarrhea (there I said it!) or not eating… What would you choose? You may say it’s an easy decision until you’re faced with it in real life.

  1. “I wish I could Netflix and Chill all day and not go to work.”

Ok, I’ll admit, before I was sick, I would’ve thought this was awesome as well. But it gets boring really quick. For the first 10 months of being sick, I didn’t even have the energy to read. So literally, all I could do was watch TV. My brain was FRIED. I wish I could go back to being a productive member of society. I miss working. I had an amazing community of colleagues where I worked and I really miss those friendships. I now take care of my daughter, which I do love doing! And if asked what I do, I now say I’m a stay-at-home mom, which I wear that title with pride. But I didn’t willingly step down from my position. This decision was forced on me. Hopefully, one day, maybe, I’ll go back to work, but as of right now it’s not even a possibility. So watching my daughter from the couch, while I read or watch Netflix, is my current job. That and being chronically ill; it really is a full-time job. Trust me.

  1. “I would love to be able to sleep 9 hours a night!”

Yes, I sleep 9 hours a night on a good night, but I literally never, ever, ever feel refreshed in the morning. Ever. And it’s also not like I sleep in – I have a 2 year old and 2 year olds love getting up at the crack of dawn. I go to bed early because I am so beyond exhausted after supper that I can’t keep even my eyes open. I also have a lot of nights that I don’t sleep through the night. I often have to get up to go to the bathroom, and although I’m not in the bathroom for this long, I’m usually awake for a good hour – hour and a half when I’m up. Once I’m done in the bathroom, I lay in bed and I can’t calm my brain down. I still replay what’s happened in my mind all the time, and for whatever reason, my brain likes to remind me of my illness, my stresses, and all that goes with this new life at 2 a.m.

I get it, in a perfect world not working and not gaining weight while eating whatever you want yet still not becoming malnourished all while watching Netflix sounds like a super sweet deal. But when that all comes with chronic fatigue, chronic diarrhea, being hooked up to an IV 12 hours a day, getting awful cramping, etc. etc. – it’s really not all it’s cracked up to be. Be thankful for your health, be thankful for your job, and be thankful for those calories you have to count. Because one day, all of that can just be snatched up from under you and you’ll wish you had all of it again.

You envy my life? A day doesn’t go by that I don’t wish that I had yours.

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Dear Short Bowel Syndrome

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Dear Short Bowel Syndrome,

You are a jerk. You are literally the crappiest thing that’s happened to me. I hate having you as a part of my life and I wish I had never been introduced to you.

I knew nothing of you before, most people don’t, and most people don’t think you’re as awful as you are because your name isn’t scary sounding. Maybe as bowels you were just tired of people not thinking of you in general and that’s why you decided to act up. I’ve always known what you, my bowels, do in my body, but do we ever REALLY think about it? You digest my food, but nobody ever wonders what would happen if you were to go missing. Well now that I know, I wish I was ignorant to that fact again. Maybe nobody thinks much of you because you’re such an irritable bastard!

Well now you have my attention. I miss you more than I’ve missed anything. I would give basically anything to have you back. You feel like a long lost lover, one that I will forever yearn for. One that I will never forget. Your absence forever haunting me.

I know you’ll never come back, you’re gone forever, but know that you will never be forgotten and that I will think of you every day.

With love and despair,

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Is There a Time Limit on Grief?  

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I’ve learnt over the years that we not only grieve when somebody in our lives die, but that it’s natural to grieve any form of loss in our lives. Of course we grieve when people near and dear to us die. The world has grieved the loss of many celebrities this year. We grieve as we see the devastations happening around the world – both natural and man-made. We grieve the end of relationships and friendships. Grieving the end of a chapter in our lives, the end of a good vacation, even the end of a really good book.

The question I want to ask is, is there a time limit to how long we’re allotted to grieve? Are we given just a few months and then expected to move on? Only allowed to relive the empty space that was once filled by said person, event or thing on the anniversary of its death?

I’ve been grieving the loss of my health for the last year and eight months. Now, for those of you who have never had major health issues, you probably think I should have moved on by now, right? For any of you who have had your diagnosis for the entirety of your life or from a very young age, maybe you’ll give me more time, but you may also think that at a certain point I need to put on my big girl pants and get on with it. But those of you who had good health and then fell ill, losing such a huge portion of your life, you understand what I mean when I say I’m still grieving.

I know I’ve broached this subject before, I probably will again to be honest, but for the first time in months I finally feel like writing again. Why you ask? Because I’m still grieving. This all still hurts. And it’s so much easier to crawl back in my hole than to try and make you all understand how it feels.

For the majority of people with any sort of chronic illness or pain, winter is awful! I live in Canada and although winter solstice is right around the corner, we still only have sun for a maximum of 8 hours a day at the moment. It gets very depressing when there are many days where it’s very gloomy and we don’t see the sun for days at a time. And the days when it is sunny, it’s extremely cold. Everything hurts because of the cold and the damp weather. It hurts just to wear the heavy coats and layers of clothing. If it’s bad weather I’m stuck in the house. Even on nice days, to take my daughter out takes an exorbitant amount of energy just to get us both bundled up to go outside.

I’m reminded on a daily basis of what I once had. The holidays make it well known to me that I am still very sick. I spend the rest of my day exhausted and in pain if I decide to take a couple hours to bake or go do my Christmas shopping. I have had to turn down parties knowing I need to save my energy for other events. I’m not even able to go see my family this year because the travel will cost me too much for the short amount of time I’d be able to spend with them.

I think all of this still part of the grieving process. It’s hard to shake the sadness off. I’m forcing myself to get out of the house, to shower, to get dressed. All things people who grieve struggle with on a daily basis.

I literally can’t go a single day without being reminded of what I’ve lost. Some days are easier than others. Will I ever have a day that I don’t feel sadness? Jealousy of others living without an illness? Anger that this all happened to me? No clue. But I know that I’m not giving up. I will trudge through this. And I will take all the time I need. I refuse to put a timeline on my grieving.

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The Chronically Ill Cha-Cha – Two Steps Forward, One Step Back

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It’s been a while since I’ve posted something, and as much as I wish that it’s because I’m having an amazing, fun-filled summer, it’s not.

With having a central line (my Hickman), as soon as I have a fever, I have to go to the emergency department – no ifs, ands or buts. So it was quite a disappointment, when on my husband’s birthday, I was running a fever for the first time since being discharged from the hospital in June, 2015. The hospital took cultures, which takes a few days before showing any signs of bacteria growing, and sent me home as with my lowered immune system I would be safer from other infections there. Three days later, I was called in and admitted for a bacterium found growing in both my Hickman and peripheral veins. After trying my best to not have my Hickman pulled, the hospital removed it and a PICC line replaced it. After all was said and done, after two nights spent in the hospital, I was sent home on IV antibiotics.

I was doing ok, showing no signs of fevers, until a few days later when I woke up ta 4am with a 39.5°C (103.1°F) fever. In the morning, we were off to the hospital once again where I would end up spending the next week away from my family. For the first five days that I was there, I kept running fevers, my white blood cell count was at 0.87 (the norm is 5-10), and I was unable to connect to my TPN (IV nutrition) for five days as the infection had spread to my PICC line and they didn’t want my TPN to go through the infected line, picking up the bacteria, and sending it to my heart (where a central line ultimately leads to).

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I’m going to just go off on a side tangent for a moment here to help you understand how I was feeling after those five days. I went five days with no nutrition. Most of you know that I can eat, but I don’t actually absorb anything. And because I can’t absorb anything, there’s no point in a feeding tube either. Fevers were taking all my energy – having at least 2 or 3 a day. By day five, my muscles were hurting because they weren’t receiving the nutrients that I needed, my concentration was gone, and my body completely drained. Walking to the bathroom took energy. Staying awake for visitors would exhaust me. Everything, literally everything, became an arduous task.

They finally figured out that the bacteria growing was called Gordonia. It’s mainly found in long term TPN users, and very rarely at that. The doctors put me on a pretty potent antibiotic, and after 48 hours fever-free, I was finally sent home.

Although the fevers were gone, the antibiotics were kicking my butt, making me beyond fatigued all the time. No amount of sleep or rest cured it. Thankfully, with my husband, mom, and mother-in-law by my side, our home continued to run and myself and my daughter were well taken care of.

The day I went into the hospital for the second time, before my week long admission, was a Friday. We had plans for an amazing weekend – I had been looking forward to these plans all week. Friday we were going to take a picnic and go to a splash pad with our toddler. Saturday we’d go to the Farmer’s Market (where they have the best dumplings!) and then for locally sourced ice cream afterward. And Sunday, go to our church where we always feel an outpouring of love when we attend. I was SO looking forward to a “normal” weekend, which is far from the norm for our family, and it was ripped away from me.

I recently posted this picture on Facebook:

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I posted that more so to try and encourage myself, to try and make light of the ridiculousness that has been my life these last two years, and to help myself see that this new life of mine isn’t all that bad. But unfortunately, it didn’t quite do its job.

Here’s the real reason why I haven’t written a blog post in two months. I’m angry. I’m frustrated. And I’m tired. I don’t want my blog to be a cheerless space. I want people to be able to find encouragement and hope through my words, at least some, if not most of the time. But people keep asking me how I am, and truthfully, I don’t know how to answer. I was doing ok. Getting used to my new normal. And then I got sick again. Infections and Sepsis come with this illness’s territory, I know that, but how frequent will these hospital admissions be? Will I ever come to terms with this? Every time that I start adjusting to my life as someone with a chronic illness, will another infection come along, knocking me off of the mountain I’ve so desperately been working to climb?

Hopefully my next post will bring a little more light to your day. But I needed to make known how hard these last couple months have been. Being chronically ill is hell on earth. This post isn’t to get sympathy and I definitely don’t want your pity; I just needed you all to know that just because I may look like I’m better, I’m not.

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I Can’t, but We Can

I’m a very blessed woman. I have always had a community of some sort around me. Through every walk of life, I’ve at least had one person to turn to and as I grow older, my support systems have grown – both in depth and numbers. More importantly though, I have come to appreciate them so much more in the last year.

I have my family – my husband and daughter, my parents and siblings, and my in-laws. I also have my friends that may as well be family, those both far and near. These are the people who were the first ones there when I was sick. Waiting with Joe while I was fighting for my life in surgery. Hopping on the first flight to be by my bedside day in and day out. Friends who, over the last year, I have been able to call while in tears because I am so fed up with my situation. I realize not everyone has family and friends like this, but I have been immensely grateful to have these people by my side.

There are so many other forms of community out there though, and take it from me, no matter what you’re going through, you need community. Whether to help you celebrate or grieve different situations in your life, they are a necessary part of it.

Church – I found a great community in my church and I literally had hundreds of people praying for me, feeding my family, and helping care for us in many ways while I was hospitalized. These are the people who have held on to hope and faith and kept praying for me when I just wasn’t able do it for myself.

Online Community – I so love and appreciate the fact that everything is online nowadays. I have been able to connect with people from all over the world who also rely on TPN as a form of nutrition. Through Facebook, I’ve been able to meet a mom here in Ottawa whose daughter is on TPN (and am so looking forward to meeting her daughter). I’ve also become great friends with a woman down in Texas who went through a very similar situation as mine last April and hope that we can one day meet in person. I am forming friendships that I never would have found otherwise. They are under very unfortunate circumstances, but nevertheless, I am very thankful for my new friends.

Being diagnosed with a rare illness makes it hard to find answers (my doctors don’t have answers to many of my questions), and through online forums I’ve been able to ask many questions to others who have been on TPN for longer than I have. The best resources have been through these online communities.

Even just through Facebook and writing on my blog, I have regained contact with old friends who are also struggling with a variety of life’s hardships. It’s interesting how when life seems to dump on you, it can bring people together. Hurting people tend to know how to encourage other hurting people, no matter how different their situations may be.

Support Groups – The last form of community that I want to mention in this post, is support groups. This isn’t necessarily finding a group that is going through something similar to what you are, although it can be, but it’s also to find a group that will uplift and encourage you and that you can do the same for the others in the group.

I’ve been going to a Mom’s group which has brought into my life such wonderful women. Although we all come from different walks of life, it’s 2 hours a week where we can forget life’s troubles and just come for a laugh and a good time. It’s something that I really look forward to going to and again, it’s introduced me to people that I may not have necessarily gotten to know.

I’m also starting a book group with a few others to study Walking with God through Pain and Suffering by Timothy Keller (check him out, I love his books)! This is obviously a very different type of support group than the one I previously mentioned, but I really didn’t want to go through this book alone. I know that it’s going to bring about some very difficult issues to deal with and why not go through it with other people who are also grieving different losses in their lives.

There are so many different forms of community out there. You don’t have to be a part of a big family or a church. You don’t have to be ill or going through a difficult time. But everyone needs a community of some kind. It’s so important and so necessary for the soul.

I really don’t think I could have gotten through this last year without my different communities. They’ve all played their parts and for that I will be forever grateful.

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I hurt, God hurts

Something I’ve noticed while walking through this journey over the past few months is that certain people seem to get really unsure around someone who is going through a painful or challenging experience. An experience that someone has never gone through – something that to them is unimaginable often brings out the awkwardness and uncertainty. What does one say to someone during these times?

The majority of people are Encouragers: “Keep your chin up”, “You’re so strong – you can do this”, or “God will pull you through this”. We also have the Silver Liners: “At least it’s not cancer, a heart attack, or insert some horrible ailment that they believe is worse here”. There are the Fixers: “I know someone who went through something similar – they did this and were healed”, “This diet will fix you”, or “Exercise, exercise, exercise!” And, since I’ve always been a straight shooter this last group is my personal favourite – the Realists: “This sucks – but I’ll be here for you and hold your hand”. They allow you to cry it out, and perhaps they even cry alongside you.

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Everyone means well. I really believe they do, but sometimes it’s better to not say anything (in my opinion) than to fill the conversation with awkward niceties because you don’t really know what else to say. One thing you can do is just ask what they need from you. It’s such a simple thing, and if they’re comfortable with you, they’ll tell you.

One of the things that was said to me often that made me upset) was “God is putting you through this for a reason, He’s testing you”. Telling someone this while they are in the midst of fighting for their life is a HUGE slap in the face. HUGE! I 100% do not believe God did this to me. This isn’t to say that I don’t think God will put tests in people’s lives, but there’s a difference between going through a patch of financial difficulty to learn to rely on God and literally being on your death bed. That being said, I still struggle with wondering why God didn’t stop this all from happening. I’m sure I’ll struggle with that one for a while.

I had an old friend message me while I was in the hospital and he brought a different perspective that was beyond encouraging. He said:

I just want you to know that God loves you as much now as He ever has, and the depth of that love is unimaginable. And every time we feel pain, or weak, or frustrated, or depressed, that God sees that and it breaks His heart and He suffers alongside us.

This! This made me think of how I would react if my own girl was hurting or how my parents were feeling while I was laying there in a hospital bed. When your kid hurts, you hurt. When you hurt, God hurts. When I hurt, God hurts.

One last thing I want to share with you today – I remember one night, early on in my hospital stay when my family had gone home for the evening and I was on my own. I was feeling so alone and so scared. I don’t know if it was a dream, a vision, or whatever you want to call it, but I saw/felt God holding me. He was holding me in His arms like I would hold my baby girl. It brought me so much comfort at the time – truth be told, it still does! I knew He was there and that He was caring for me the way I needed in that moment.

When I hurt, God hurts.

but God…

Before I get deep into my first blog post, let me summarize for you what happened to me 10 months ago. In April 2015, after a couple trips to the emergency room, I was rushed in emergency surgery after becoming tachycardic and showing signs of major abdominal pain. After my first surgery, they had removed the majority of my small intestine, disconnected my esophagus from my stomach and my stomach from the remainder of my intestines. When I woke up from sedation, two days later, the surgeon told me that I would never eat or drink again and that my quality of life was going to be severely diminished. After a few more days, I still was unstable, and so I transferred to another hospital where there was a gastro specialist. 6 days after my first surgery, I showed no signs of improvement and underwent a second surgery. The remainder of my small intestine had continued to die and the surgery resulted in them having to remove the rest of it along with one-third of my large intestine. Although the first surgeon was wrong and I can eat and drink, I can’t absorb any nutrients and I now face a life of living with IV nutrition, deficiencies and constant exhaustion.

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.  –Genesis 50:20

This verse has been what’s gotten me through, day by day, for months now. I still have no clue why this happened to me. I still have my “why me” days, and I’m sure I will for a long time to come. I don’t believe that God caused this to happen to me and I don’t think this “happened for a reason” — and in fact I get insulted when people argue with me on that point. I think this is one of the many moments in life that you just have to say “crap happens”. I do however believe that God saved me. The doctors themselves are baffled that I have survived this. And I hope that because it did happen, that it can be used for good – that my pain is not in vain (whatever that may look like).

Those two words “but God” are a turning point in the verse I quoted above. They represent hope that God can take this horrible situation and use it for good. Use it to help someone else. The hope that I find in this verse is what gets me through my painful mornings and helps me get to the end of my beyond exhausting days. Without hope, I wouldn’t be able to get out of bed in the mornings. I would be drowning in despair. I would not be able to do this without my faith in God and the hope that things will get better.

I definitely still have rough days, quite often actually. But when I have good days, I make sure to make the best of them. I try and stay positive, but I allow myself to have my negative days where I throw fits and yell at God. Eventually the reality of it all will become normal and my rough days will be fewer and farther between as time goes on and with God’s help.