I’m Makin’ A List .. Checkin It Twice..

People make lists for all types of reasons. Grocery list. To-Do list. List of Goals. When you have CHD you get to make lists that most people don’t. Lists of questions for your doctors and surgeons. Lists of physical activities you must be exempt from. Lists of medications you are currently taking. Lists of previous surgeries. Lists, lists, lists!

As and adult CHD patient this will be my first time making two lists I have never made before.

The first thing I need to make a list for is all of the things I need to pack/purchase/gather/activities to complete for surgery. Reality has set in as my surgery and pre-op dates have been finalized. May 8th is pre-op and May 9th is surgery. I have a little over a month to gather all of the things I will need while in the hospital as well as business I need to finish before I am out of commission for an unknown amount of time. So far here is what I have on that list:

• PJ bottoms (pack)
• Shirts that button down the front (pack/purchase)
• Tank tops without a shelf bra to use as under shirts (to keep the girls down and the high beams off) (pack)
• Panties (pack)
• Slippers and slip free socks (pack)
• Flip Flops (pack)
• Toothbrush and Toothpaste (pack)
• Glasses (pack)
• Contacts (pack)
• Makeup (pack)
• Hairbrush (pack)
• Waterless Shampoo (purchase)
• Regular Shampoo and Conditioner (pack)
• Ponytail Holders (purchase)
• Blankets and sheets (blanket for me and blanket and sheets for Gabe’s pull out couch bed in my room)(pack)
• Pillows (pack)
• Chap stick (purchase)
• Kindle w/ charger (pack)
• Cell phone w/ charger (pack)
• Mom’s Laptop (pack)
• Xbox 360 w/ games and controllers (purchase)
• Notebook, Markers, & Pen (pack)
• Aspirin (meds for when I am released)(pack)
• Gabe’s medications..Insulin, Needles, Glucometer, Neurontin (pack)
• Call the social worker at my hospital to call Harboring Hearts charity to try to find housing for me to stay in for 2-4 weeks after hospital release
• Help my mother find a good hotel deal for her and my step-dad for 2 weeks
• Possibly buy a car the week before surgery depending on if/when my SSI and SSDI back pay gets sent to me
• Get the dog to the vet for checkup
• Send in my completed forms to the courts to officially file for my bankruptcy
• Turn in paperwork to the department of education to begin the process of loan discharge due to disability

As you can see this list is long and it is probably still incomplete. You might be saying that wanting to purchase an Xbox 360 is silly and ambitious and shouldn’t be on this list. Maybe you’re right. However, I don’t want to be bored in the hospital and I love playing video games. I fought the government for 2 years trying to get disability that I should have been given to begin with. This is my present to Gabe and myself for not giving up and for doing without any support of my own for 2 years. I am not one to spend frivolously but I believe I deserve at least one thing that I actually want vs. only things that I need. I do NEED a car and I am planning to purchase one. I do not know if my back pay will come in time for me to purchase one before surgery and if it doesn’t then that will have to wait. The dog NEEDS a check-up as it is getting warm out and we need to get some flea and tick as well as heart worm prevention medication for him.

Surgery will be held at Phoenix Children’s Hospital and I will be staying in the CVICU the entire time. It is a very nice facility and family oriented. They tell me there are no “visiting hours” and families are encouraged to be present the entire time to boost recovery. They have a pull out couch bed in my room as well as a family center that houses full size washers and dryers, free flavored cappuccino machines, showers stocked with towels and toiletries, phone and business center, as well as a fully stocked kitchen in which families can make home cooked meals. If you would like to take a virtual tour to see my accommodations click HERE and then click on the 5th floor.

The other list I am compiling is a list of my wishes should something unexpected occur and result in my death. I don’t consider this morbid because in reality something could go wrong and if I am not able to tell someone what I want and I have no living will then my family will have to bear the burden of deciding what should and should not be done to and for me. I really don’t know exactly what is all going to be on this list but it is on my mind. I do know that I want to be buried and not cremated although I am undecided as to where I would want my finally resting place to be. I also know that I do not want to be kept alive should my brain be dead and my body become a vegetable. That is no way to live and someone else would surely benefit from receiving my healthy organs. Of course I do not expect any of these things will need to be enacted but I do need to prepare.

In other news… I have been contacted by Congressman Gosar’s PR department. I was informed that after my blog had been re-tweeted on their Twitter page they were contacted by two reporters who want to talk with me. One of the reporters is from the Arizona Republic and would like to do a piece on how I used social media to gain the attention of the Congressman and others to help with my SSDI case. The other reporter is from the University of Arizona school of journalism who would like to do an on camera interview with myself and the congressman. U of A want to do a piece on my entire experience with SSDI. I have been warned by several people that I should or shouldn’t talk about this or that because it can be used against me later. I am not sure what exactly they will ask but I am going to try to be as honest as possible without screwing myself.

I re-read my SSDI award letter last night and had a mini panic attack. The VERY last line of the letter at the VERY bottom of the page states “The claimant is expected to medically improve after treatment including heart surgery. This case will be reviewed in 12 months to re-evaluate the need for SSDI.” I’m sorry but first of all.. the recovery time for this surgery alone is 12 months AT LEAST. Second of all, did they not read the part where in my case it said this is a LIFE LONG condition and my prognosis will NOT improve? My heart isn’t going to magically regenerate the half of it that is missing/no longer works. The doctors say although my blood flow will be better that I will probably always be symptomatic. Then my mind wanders and thinks if my SSDI did ever get taken from me what would happen in the future when the doctors tell me I need a transplant? Will I have to re-apply and wait another 2 years and possibly die AGAIN? I understand that this is probably standard procedure but at the same time there are things that should just be automatic. People with missing pieces of organs, people with chronic illness, people with traumatic brain injury… all of these people should receive SSDI automatically and that should be the end of it. Let me tell you all something. Those people, like me, with a chronic medical illness ARE NOT PROUD TO HAVE TO BE USING THE SYSTEM. Do you know how painful it is to admit you cannot complete the most simple of tasks due to your condition or what harm the time you spent doing those things will cause you later? It’s embarrassing to say the least. I think being subjected to reviews every year or two from the government when you have a REAL disability is asinine.

I will end this blog on a positive note. As many of you might guess I am sinfully addicted to reality TV. I was watching a show on MTV called Battle of the EXes when one of the contestants started talking about a foundation she created. Diem Brown was diagnosed in her early 20’s with cancer. When she was ill she could barely afford her medical bills, let alone the cost of a real hair wig. Not being able to purchase one was devastating and as a result the idea for MedGift.com was born.

MedGift.com is a website in which patients in medical crisis can interact social networking style as well as create a registry much like anyone would for a bridal or baby registry. Patients can ask for make lists pertaining to their needs, wants and wishes, keep an online record of their physical medical record, as well as keep supporters updated on their progress. Any patient can create a profile on the site and use it’s social networking capabilities as well as the wish list. Patients can only edit the needs and wants lists if their hospital is a participating provider. Hospitals who are participants in this program give their patients the options of creating a registry for medical needs for anything from medical equipment to monetary donations towards a patients hospital bills. The site is very secure and has privacy settings so you can choose who sees what concerning your medical status. This site is phenomenal and should be in ever hospital in America! I cannot tell you how many CHD families would benefit from using a site like this to keep their families informed and gain support from family members who are unable to be present for major procedures. My hospital is not yet affiliated but I am using the site for it’s social networking capabilities and wishes list. If you visit the site and think it is as awesome as I think it is you can contact Relay Health with contact information for your hospital as a lead for them to follow so your hospital can become a MedGift affiliate. To contact Relay Health about your hospital you can send an email to RelayHealth@RelayHealth.com

 

 

 

 

 

 

I’m a SMURF!

September 22nd 1983 I took my first breath, who knew it wouldn’t turn me pink like it’s supposed to do to all newborn babies? No one could have predicted that upon taking that first breath I would remain the color of a smurf and set off the fear alarms of all the other people present in the room including my parents, doctors and nurses. The opinion in the delivery room was unanimous, something was seriously wrong. Within two hours of my entry into the world I was riding shot-gun in a pickup truck with my daddy and granny on my way from the hospital nursery to the Children’s Hospital of The King’s Daughters where I was going to be evaluated as if I were an amoeba being looked at under the microscope in a tenth grade biology class.

After a thorough exam and an echocardiogram it was determined that everyone was right, something was wrong and the problem was my heart. I guess somewhere between wherever it is we come from and the womb someone forgot to give me my Tricuspid heart valve and didn’t place the screws tight enough in my Mitral heart valve. Diagnosis? Tricuspid Atresia with Mitral Valve Prolapse.

The definition of Tricuspid Atresia as well as causes, incidence and risk according to the University of Maryland Medical Center and Me:

Tricuspid atresia is a type of in which the tricuspid heart valve is missing or abnormally developed (The creator of the universe didn’t bother to attempt to give me one at all). The defect blocks blood flow from the right atrium (upper) to the right ventricle (lower).

Tricuspid atresia is an uncommon form of congenital heart disease that affects about 5 in every 100,000 live births. Twenty percent of patients with this condition will also have  other heart problems (well this explains the fact that the screws weren’t placed in the door hinges of the other valve).

Normally, blood flows from the body into the right atrium (upper), then through the tricuspid valve (yeah.. that didn’t happen) to the right ventricle (lower) and on to the lungs. If the tricuspid valve does not open (or is MISSING), the blood cannot flow from the right atrium to the right ventricle (well that would be because the right ventricle died). Blood ultimately cannot enter the lungs, where it must go to pick up oxygen and become oxygenated (ahhhh, that explains being blue.. I guess that tends to happen when your blood stays blue due to no flow to your lungs to get oxygen)

Infants with tricuspid atresia generally are cyanotic (SMURFS!) and easily become short of breath (why my mother had to tap on my feet to keep me from falling asleep due to exhaustion while drinking my bottle).

So instead of looking like this inside:

 

I ended up looking like this inside:

And that ladies and gents, was my crazy introduction to this crazy thing called life. Since being diagnosed I have undergone two open heart surgeries. I had a Blalock and Taussig Shunt at the age of five and a half months old and an old style Fontan when I was two and a half years old. I am currently gearing up for round three on the operating table for the Fontan Revision/Maze procedure sometime within the next year.

This first entry is just an introduction, stay tuned to read about reminiscent stories, present day adventures and peeks into the future of a woman who loves with half her heart.