Saturday, June 21, 2014

National IV Drug Shortages

As many of you know both my brother and I rely on TPN to survive. TPN is IV nutrition. TPN is a mixture of lipids(fat), vitamins, additives, heparin, free fluids, and carbohydrates. The mixture depends on what the person needs in their body and how much they need. TPN replaces food for when a person is unable to eat enterally. Whether they can't eat food itself or they are unable to tolerate formula through a feeding tube into their stomach and/or intestines.
That big white bag is TPN.
Both my brother and I have a paralyzed digestive tract. Basically what that means is our digestive tract is unable to move food and liquids through our gastrointestinal system. Food will literally sit in our stomach for days before we either vomit it back up, drain it out, or by some miracle it moves even the slightest bit. The disease is called Gastroparesis/Digestive Tract Paralysis. Gastroparesis literally means paralyzed stomach and Digestive Tract Paralysis is pretty self explanatory. Tyler and I first started out relying on feeding tubes but soon our disease progressed and now we are fully dependent upon TPN.
My feeding tube which was surgically placed in my abdomen.
My brother, Tyler and I.
TPN is administered through a central line in the chest and or a picc line which comes out of your arm. The line travels straight to your Superior Vena Cava in your heart. So basically we eat through our heart. Sounds pretty cool I know but it's also very serious. There are many complications that can occur due to a central line you can have an infection resulting in sepsis, you can develop endocarditis, blood clots, air embolisms, hemorrhage, bruising of the blood vessels, punctured lungs, arrhythmia, death, and many more. Tyler and I have been to the hospital multiple times due to complications from our lines and it never gets easier. While these lines do have many complications they are also the only thing that is saving our life and sadly you have to take the good with the bad. Either we die due to lack of nutrition or we risk dying due to a complication. What's the lesser of the two evils? That sounds quite harsh but sadly it is reality for so many families.
Family
Not ashamed of my tubes!
Tyler has a central line which is called a broviac which is surgically placed in his chest and the tubing comes out through the entrance point and you use it to infuse TPN, IV fluids, and IV medications. I have a port-a-cath. Which is surgically implanted under the skin and you use a needle to access. When I am not accessed I can shower like normal, swim, and do anything I want. I have to be accessed everyday and I receive medications every six hours there for I have to have access to my blood stream. Some people have issues with being accessed however I don't I don't think it hurts. I even access my own self! It is quite easy to stab yourself with a needle by the way! Who would have ever guess?
video
Accessing my port by myself!

Tyler's Broviac placement
In the most recent years there has been a struggle with IV drug shortages. Tyler and I have been effected. Due to lower numbers of minerals and other medications we are unable to receive important vitamins to our daily TPN. Phosphorus, magnesium, B12, copper, lipids, and even normal saline are some ingredients missing from our TPN! Yes you heard me right normal saline! Many hospitals are limiting the amount of normal saline given to a patient just because they do not have enough to be able to properly treat a patient. Babies, children, and adults are dying yet nothing is being done to help them! If it was you or your child who was dependent upon TPN due to a disorder, cancer, a premature baby, and even an accident patient would you want the best care possible? I know I would. Every week their is almost something shorted from our TPN. For example I am only allowed to get lipids four days a week due to the IV drug shortage. Lipids which is the fat to help us gain weight is very low in numbers and they have had to limit patients ages 12 and older to lipids only four times a week and if you are more than 50kilos you are also required to only receive lipids four times a week. The basics are missing how are we missing the basic IV medication patients need to survive?
The newest trend going around by actors, actresses, athletes, and celebrities is called "IV Therapy," "Vitamin Drip," and many other names. These "medical spas" sell IV vitamins to patient to recover from a hangover, partying to hard, jet lag, and to just get a boost of energy. Names of those who use these IV vitamins go from Simon Cowell, Ryan Phillippe, Cindy Crawford, Madonna, Rashard Lewis and many more. While these people are just getting IV vitamins to get an extra boost when they have partied to hard their are patients like my brother and I who are fighting to survive. Yet we are denied these IV vitamins while celebrities are able to get their IV vitamins as they please. I'm disgusted by this "glamorous" trend. Do these people realize CHILDREN ARE DYING? Patients like Tyler and I are forced to go without these vitamins, while celebrities get the exact same ingredients and vitamins we need! How is that fair?
Getting to eat for the first time in 14 months! (Yes I was crying)
Emergency Surgery November 2012
Just a few of the missing IV medications, vitamins, and ingredients are: lipids, calcium, 0.9% Injection Bags, selenium, copper, B12, Zofran, Vitamin C, Magnesium Chloride, Zinc, and many other different vitamins. All these drugs are currently in shortage however these "medical spas" can get as much as they want without any issues. I find it quite depressing when celebrities come before dying babies and children...
A few days post picc line placement.
 My best friend, Brynn who also has a chronic illness.
November 2012
TPN is the only way my brother and I are alive! If we didn't have this we would have been dead a long time ago. I'm begging you to help us put a stop to this trend. If the national IV drug shortages just keep continuing more and more children/adults will be dying. The shortages will only get worse and we will be deprived of more and more vitamins that we use to survive! Do it for my brother, premature babies, children, adults, and me. I only turned 16 a few days ago and my brother turned 9 last month. We have a lot more to live for! We were put on this earth for a purpose and what purpose is that if we haven't been able to live our life to the fullest?
February 2013
September 2013

May 2014

I hope our story opened up your eyes a little bit. Please share and help us raise awareness of the National IV Drug Shortages!

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