Preparing For A PICC Line

I have been doing Saline for POTS for about a month now. The improvements have been astonishing to everyone. While getting treatment twice a week I was not falling, improved heart rate improved blood pressure, and less pain (most times) with passing stones. Being able to shower and not get dizzy is something that is hard to put into words. Simply amazing.

We are attempting to taper the steroids a little. However, it is quickly becoming apparent that my body is not okay with this move. The pain and fatigue are expected. In addition, my blood pressure is regularly crashing. My POTS doctor put an immediate pause on the tapper to avoid me being admitted to the hospital. We are now preparing to have a PICC line placed so that I can do fluids at home. I have gotten to the point with my POTS that I can become critically dangerous at any point. It’s not just a little low blood pressure but extremely dangerous low blood pressure (that refuses to respond to salt).

With my final week of school, I was only able to get to chronic care once this week. It was a good learning experience for everyone involved showing how well I respond to Saline. The combination of tapering and less Saline has been difficult.

The goal is to do this short term a few months, but it is a see how it goes type of a deal. We have opted for the PICC line mainly because of time frames (a Midline wouldn’t stay in as long and the doctor thinks the Port is too drastic). Additionally, it is easier for me to do things on my own in comparison to a Port.

“A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your child’s arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood from the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.” (chop.edu)

PICC lines can be used in many different illnesses such as Lymes, EDS, POTS, CF,  and IBD just to name a few. Others with chronic illness may use it to give antibiotics or to get TPN.

Many people find medical procedures intimidating. Here are my preparing for a PICC tips!

Educate Yourself: Your doctor will give you information but take the extra step. I would suggest reading three to ten articles from reliable sources. Read about how it is inserted and how to care for the line. Youtube also has some solid information.

How is the PICC inserted?

  • A specially trained nurse or doctor will use an ultrasound machine to find the veins in your upper arm.
  • Your arm will be cleaned and covered with a sterile cloth to prevent infection.
  • Medicine is used to numb the area where the PICC will be placed. The PICC will be inserted into a vein just above the bend of your elbow and guided into a large vein in your chest. Most patients feel little or no discomfort during this procedure.
  • Once the PICC is in place, it is held to your arm with special tape and covered with a sterile dressing.
  • A chest x-ray is taken afterwards to make sure the PICC is in the right place.
  • You will be able to bend your arm and use your arm just as you would without the PICC in place. my.clevelandclinic.org/

Connect With Someone: Find someone with a PICC line to connect with. If you are unsure where to start check out a Facebook support group. In addition, talk with a family member about it and at least one friend. Those you love can offer a unique perspective.

Supplies: There are some things that are included like the saline flush, your meds, and the tubing. I decided to invest in a PICC line cover to wear during the day. There are so many cute options these days! I got my cover from Sleek Sleeves on Amazon. I also invested in a shower cover which I am hoping works like a charm.

Additional Tid-Bit Tips: 

a1562040895_10.jpg get the PICC Line wet.

Know the signs of an infection/ know when to call the doctor

Find out if you have any restrictions with it

Know how to use it (A home nurse should stop by to give you a crash course)

Have a plan to infuse on the go if needed so that your not stuck at home if you feel well enough to go out

If you have a PICC line comment your tips!

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Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

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That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

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The Past 48 Hours

The past 48 hours have been drenched with blessings as well as apprehension. Yesterday my friend came over, which is a treat. I have been so ill that I hardly see any of my friends or go out with them. Being able to have tea and talk was marvelous. Those couple of hours are something I am immensely grateful for. I cherish the moments I spend with my family and friends.

I received a phone call, moments before my friend left, from the infusion center. The nurse informed me that my infusion was being cancelled because someone neglected to complete paperwork for the insurance company. In addition the nurse told me they had no idea when I could receive my infusion. My insurance company only approves me for my infusion for six months at a time, then it needs to be re-approved. I questioned the doctor as well as two nurses in the infusion room regarding the paper work and was assured that everything was in order, there was nothing I needed to do. It is vital for me to get my infusion on time. The day before and day of my infusion are extremely difficult. I know getting my infusion late- even by a day would throw off my body.

I called my insurance company, even though I was certain there was nothing they could do. Thankfully I was wrong. The person I spoke to was compassionate and was able to speed things up. Even though we did not know this morning if I would be able to receive my infusion, we headed down to the doctors. I made several phone calls on the way down. As I was speaking to the third person at my insurance, the approval went through.

They began my infusion an hour late. Time during the infusion crawled by as my pain intensified. In addition to my Lupus pain I was having terrible abdominal pain from kidney stones.

My doctor moved. Therefore I am now a patient of one of her former co-workers. I dreaded seeing a new doctor. I have encountered many  quacks, uneducated, and disrespectful doctors. My health is very complex it is annoying and sometimes difficult to get a new doctor up to date with everything happening.

To my delight this new doctor had reviewed my records and spoke to my previous doctor. She was also educated about my main illness, eager to assist me, and kind. After much discussion she prescribed Methotrexate.

I feel extremely blessed how the past few hours have unfolded. I never imagined this would happen. I am over joyed and very thankful to begin a new chapter in my treatment plan.

Sending you lots of prayers, spoons, and hugs ❤

*Methotrexate blog post coming soon! Be sure to subscribe this way you don’t miss it.

Benlysta

If you are a Lupie, there is a good chance that you have heard of Benlysta. For those of you who have not heard of Benlysta, I will give you a brief overview. Benlysta has been the only medication specifically developed for Lupus. It took underwent years of clinical trials and endless hours of research. It is intended to be used along with other Lupus medications. Benlysta is a biologic which is given in an Intravenous infusion once a month. There are still some trials being run on it. If you are interested in learning about how Benlysta beneficial in the treatment of Lupus I strongly encourage you to check out there webpage: http://www.benlysta.com/. Personally I have found the videos on the webpage educational as well as the information kit I received in the mail.

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It is essential for me to educate myself about medications prior to beginning them. I began researching about Benlysta a year before I began my first infusion. I read as much as I could about it, watched various videos, and spoke to others on Benlysta. I discussed the things I learned with my parents. I had my heart set on trying Benlysta. When my doctor mentioned beginning me on the medication, I began the paper work without hesitation. Once I got insurance approval I enthusiastically began my loading dose infusions. I got Benlysta every two weeks for three loading doses then went down to once a month.

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Many people recommend eating protein the night before and the morning of the infusion. I get sick if I eat large amounts of protein, therefore I eat about half the amount of protein that other people consume. It is vital to remain hydrated before, during, and after the infusion.

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Before I get my Benlysta I usually get blood work done. Then I get IV fluids and premedicated. Premedication varies from person to person. I take two Tylenol orally and get Benadryl and Zofran in my IV. The infusion it’s self is uneventful though personally I endure a lot of pain during it. (Most people do not experience this much pain. My body likes to be different)

Benlysta takes time to work. Waiting is difficult when you have endure so much pain for a long period of time. Everyone notices improvements at different times. However it is said that one does not get the full benefits until a year after beginning the treatment. I have been on Benlysta for six months now. I am going to briefly share my experience, however I urge you to keep in mind that my health is not stabilized and there are several factors as to why I have not had more benefits from this treatment. I noticed a difference from the start in pain levels. However it was short lived. I only received relief for 5-8 days.Within a few infusions my hair loss drastically got less. After my infusions I was extremely itchy until my last one. The itchiness did get better with time. I have my infusion around the time I eat lunch but I cannot eat during my infusion. Sometime my appetite decreases a bit before my infusion. I usually have trouble sleeping the night after my infusion. Everyday before my infusion becomes more difficult and more painful. My body seems to crave the treatment so much. It feels like it completely abandon my system too quick.

Though I was hoping for a drastic improvement, I am grateful everyday that I receive Benlysta. I hope as time goes on I will improve greatly.

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Please share your experiences with Benlysta in the comments. Feel free to ask questions as well.

My Year Review

As 2014 graciously departs, we reflect on the ways it has transformed our lives.  We thank the year for the all the moments we encountered both those in which overflowed with joy and those drenched in hardships.  We have learned an abundance of lessons, encounter adventures, and have flourished in character. I invite you to join me as I reflect on my year.

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Personally, 2014 was discreetly laced with ravishing moments of joy and catastrophe. My health consumed the majority of my time, outside of my academics. One is never truly prepared for a health combat and the after effects. My year began with medical luggage from the previous year. Which included a three month long kidney infection and stones, along with my usual chronic health challenges. Producing a Cytoscopy, I learned I have a fused supernumerary kidney as well as a double collecting system on my right side. (In nonmedical terms this means I have three kidneys and three Ureters.) With persistence the infection cleared up.

In March, my beloved cat Hope passed away. She lost her life to an autoimmune disorder along with internal bleeding. We developed a unique relationship. She helped care for me and provided me with love, support, and encouragement.

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Prior to losing Hope, a stray cat wandered into my house where she had kittens. Assisting her emotionally during the forty eight hour birthing session was a unique experience. Kittens and new life in general provides joy as well as hope. Caring for the mother and kittens were excellent therapy for me. After much internal conflict, with the guidance of my parents, I decided to keep the orange kitten who was born second. He had gently wiggled his way into my heart, with no intentions of departing.

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From the time I became ill, I have struggled to encounter the right doctor. I encountered many doctors who were disrespectful to me, who did not believe me, who diagnosed and undiagnosed me, and caused stress. These doctors caused the majority of my stress. By brushing my symptoms off, they allowed my body to attack me, thus allowed me to get worse. I was fairly hopeless when I met my current rheumatologist I knew if she was unwilling to help, I would not receive treatment for my Lupus. Just moments before the appointment I saw a Nephrologists. I was told I am mental, there is nothing wrong with me, and the doctor lied to me. That visit left me utterly numb. Praise the Lord my rheumatology appointment went better. A few months after being rediagnoised (for the 8th time) my doctor helped me begin the Benlysta infusion.

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Due to complications, I was only able to take nine credits spring semester of 2014. I encountered struggles with the college I attend. Throughout my schooling career I have been told several times that I am not smart and have encountered various academic challenges. For this reason I was beyond shocked when I discovered I had earned a 3.5 GPA for the semester.

In September I was admitted to the hospital due to a life treating allergic reaction to the Osteoporosis medication known as Reclast. Positive and negative things were interweaved into my hospital stay.

The following week, my orange kitten, Tommy got fixed. My mom and I dropped him off, of course I promised to pick him up the following morning. When the phone rang that afternoon, I felt sick to my stomach. The Vet did not sound right as she requested to speak to my mother and didn’t chat with me as she normally would. I digested the fragments of the conversation. My beautiful, energetic kitten was gone. I began to scream and pace. Unable to calm down, unable to understand. My heart broke. We later found out that he has heart disease and a blood clot around his precious heart. Most likely a heart attack stole him.

Recovering from Reclast and keeping up with school work was a chore. Certain symptoms did not improve. I was recommend to cardiology, where we discovered I have POTS.

Though I was consumed with fear I got another kitten shortly after Tommy departed. The Vet and my support system agreed it would benefit my cat Grace and I. We adopted a beautiful curled ear kitten, Saide Rose who is nine months old.

I enjoyed my college courses and succeed beyond my imagination in them. I managed to pull a 4.0 GPA.

I encountered many moments of joy and catastrophe. I am stilling adjusting to life with POTS.  My support system drastically shifted and crumbed in ways. I cherish those who support me and I hold them dear to my heart. I cannot fold into words how grateful I am for the support I do receive. I have been blessed to begin Chronically Hopeful, which includes the Facebook page as well as this blog. I have learned to cherish every moment and to rely on God on a deeper level.  Through God, 2014 has blessed me in many ways.

I would love to hear about your year. Please share in the comments.

Sending New Year’s blessings, hugs, prayer, and spoons. ❤