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

 

 

 

 

 

 

Just When He Thought He’d Heard It All…I Asked About My Boobs!

On March 21, 2012 I had my surgical consult for my upcoming open heart surgery. This will be my third OHS in my lifetime and the first one I have had to go through as an adult. I have been very nervous at the thought of undergoing such a procedure. I do not remember anything about my previous procedures because I was an infant and toddler during those surgeries. I have to say the mental anguish is possibly far worse than the physical pains of surgery. The anticipation is far worse than any other experience I have ever been exposed to.

My mother, step-father, Gabe and I met with my surgeon, Dr. Nigro,to discuss anything and everything about possible surgery. Dr. Nigro reviewed my anatomy and current heart health status with everyone and from there gave us 3 options. One, I can opt not to have surgery and regulate myself with medications which have already proved to be inadequate at controlling my rhythm issues. Two, I can opt to wait until my condition worsens to the point at which I can no longer wait and will die without immediate intervention. Lastly, I can have surgery now. Option one is out because medication has proven ineffective with me and has a good chance of destroying my liver and/or thyroid in the process. Option two is out because the longer I wait the worse my physical condition will become and the higher risk I will be as a surgical candidate. That only leaves option 3, operate now.

After reviewing all of this information Dr. Nigro invited us to ask any and all questions we may have. Here is the official list of Q&A between Dr. Nigro and I.

Q: What pre-op testing will be required of me before surgery? Is a heart cath going to be necessary?

A: Since having a cath only a year and a few months ago a cath is not required. I will be required to be subject to standard pre-op testing to include blood work. The team will conference one more time before surgery to ensure the game plan and if there is a piece of information they are missing they will contact me and let me know what they need me to do.

Q: What is the mortality rate for me specifically?

A: Mortality rate for this surgery is determined individually by how good your circulatory plumbing and ventricular function are at the time of surgery. My plumbing is excellent and so is my ventricular function as it is my atrium that is seriously in need of repair. My risk for death is 2-5% which may sound scary but at the time I had my first Fontan in 1986 the mortality rate for that procedure was 10-20%. The surgery is not risk free but is rather low risk. Complications can occur but things like thromboembolis and stroke during surgery are the exception rather than the rule. The most common complications and things that will be monitored closely are infection to the surgical site as well as fluid build up.

Q: How long does the actual surgical procedure take on average?

A: On average the surgery takes 4-6 hours with no complications. It can take longer but the aim is 4-6 hours.

Q: Will I have a permanent pacemaker put in place?

A: Dr. Nigro said they would be leaving pacing leads inside in case the need arose for me to have a permanent pacer. He explained that the pacer is computerized and smart enough to know when it does and does not need to be on. I told him that in that case I want the pacer put in during surgery. If I don’t need it great, it will just stay turned off but that I would rather have it there and not need it than to have to get cut open again to put it in place if I do need it. He agreed and will be putting a permanent pacer in.

Q: Will I have blood transfusions in recovery?

A: I will need several transfusions during surgery and probably one or two in ICU. There is risk of transfusion reaction but again, that is rare in this day in age.

Q: How long will I need to be on a respirator?

A: After surgery the ultimate goal would be to be off the respirator within the first few hours. Typically patients are off of the respirator within a few hours to 2 days of exiting the procedure.

Q: Will I have a feeding tube or colostomy bag?

A: No need for either of those but I will have to have a urinary catheter.

Q: Is there a possibility that my breasts won’t be the same as they are now? (I don’t want my girls lopsided or be a candidate for the nickname Biggie Smalls)

A: Dr. Nigro seemed shocked and laughed and said that my breasts will be just the same as before.

Q: Will the incision be sutured on the outside? Glued? How will that work?

A: Disolvable sutures will placed internally and there will be nothing on the outside holding the skin together.

Q: How long will I be in ICU/regular room (i.e. what is the average length of stay)?

A: Definitely two weeks minimum but four weeks is not unreasonable for an expectation either. My length of stay will depend on my progress. Dr. Nigro is concerned that I live in 2200 and 7700 feet elevation and has advised that I stay in Phoenix for at least 2 weeks after my release from the hospital. I have no idea what I will do for this as I am not sure if I can afford an extended stay hotel or to rent a house for a month. This is still up for debate and will be discussed with my cardiologist, Dr. Rhee, as well.

Q: What medications are patients that have this procedure typically expected to be on after release from the hospital?

A: Three medications will be prescribed with almost certainty and others may be added on depending on what my body does. Upon release I will be on Lasix, Enalipril, and Coumadin. Lasix is a water pill to make sure I keep fluid off of my heart and lungs. Enalipril is a blood pressure medication to make sure that my heart does not work to hard. Coumadin is a blood thinner that will be given for a short time to ensure I do not develop any clots.

Q: Will I have to have a home health care nurse after going home and for how long?

A: It is not unreasonable to have home health care for a short time after surgery. A nurse will come by to check my surgical site and take my vitals. This is to ensure there is no infection and that I do not develop any complications that I may be unaware of.

Q: When will I be able to resume normal activity and have sex again?

A: I will be able to resume activity in 2-6 weeks as well as resume my sex life (LOL). Dr. Nigro said he understood I was asking this because I didn’t want to have sex thinking I would break, which were my thoughts exactly. LOL!

Q: Will the surgery be held at St. Joseph’s or Phoenix Children’s Hospital?

A: Most adult patients have their procedures at St. Joseph’s. I told Dr. Nigro that I did not have a real preference but that I have been in Children’s hospitals my entire life. In certain cases Dr. Nigro will advocate for an adult to have their procedure at PCH versus St. Joseph’s and he believes my case is one of those cases. I am fairly certain I will be at PCH for this surgery which I am actually more comfortable with. The rooms look awesome and I hope to be able to visit the infant/children’s heart units and talk to CHD parents and kids while I am re-cooping.

That concludes the Q&A. The surgical coordinator called me yesterday and advised me that she is waiting on all of my records and dictation from Dr. Nigro to schedule the surgery. She asked when I was shooting for and I told her June. She said that would not be a problem as they do not currently have any surgeries scheduled yet for June so I get to choose to have it whenever I want. I also gave her the heads up that I wanted to have the surgery at PCH and that Dr. Nigro was in agreement. She again said no problem and that they would call me back to schedule as soon as all the records were in.

I am still nervous but feel better about the procedure over-all having met my surgeon. Dr. Nigro was straight forward and was able to answer all my questions without pause. He definitely knows his shit!