It has been 6 months since my last entry. I have been a busy bee and have neglected my CHD blog but am back at it. I have spent the last 6 months going through several changes and this post is going to be chock full of updates.
1. Disability Application Status – After being denied by the SSA twice, I was on my third and final appeal as of September. I hired a lawyer and provided more than enough evidence to the SSA to be granted Disability. Here are the highlights as to why I do not feel my case should have ever gotten to a third appeal because of the evidence presented before the second denial:
- In December of 2010 my doctor reported after a cardiac catheterization that I had chronic Atrial Flutter and a severely enlarged right atrium. The doctors described it to be the size of a grapefruit.
- My doctor wrote the SSA a letter in July of 2011 stating that I was in NYHA Class III heart failure and needed surgical correction to live.
- My doctor filled out a cardiac questionnaire and stated that I was only able to work continuously for 1 hour before needing a rest period of 3 hours due to my current condition. He also stated that I would likely miss work at least 3 times per month as a result of impairment or treatment of my condition. The doctor stated this had been true as of January of 2011, if not earlier.
- My condition, Tricuspid Atresia, was added to the Compassionate Conditions list of SSDI in July of 2011. Although I feel this addition was to appease the ACHA, Adult Congenital Heart Association, and make them feel like they are making a difference. Turns out, the addition of TA to the Compassionate Conditions list does not automatically deem your disability as granted. All it does is move your case to the front of the line when you apply THE FIRST TIME. If they deny you, you are in the same boat with every other applicant.
I was told after I retained legal council that I would have to wait 12-14 months to be given a court date but that it would probably take 5 months or less. In December I received a letter stating that my case had been forwarded to a Virtual Screening Unit. The VSU is a group of medical and law experts hired by the SSA to approve cases they feel have enough evidence to be approved without going to trial. I thought “YES! it will definitely be approved.” WRONG! I received a call from my lawyers in late January advising me that the VSU stated the evidence was not enough to approve me and that I would indeed have to go to trial. I was in utter shock and disbelief. I was at a loss as to what to do. In the mean time I had a doctor appointment with my cardio on Feb 13th. I had an echocardiogram and EKG to check on my condition. My doctor said that my condition was the same and that my atrium was a few centimeters larger than it was previously indicating that I am slowly getting worse. I nicknamed my doctor Smiley because no matter what he says he still smiles from ear to ear. Not this day. He asked if my disability had been approved so we could move forward with surgery. I told him no, I am still waiting for a hearing date and that the VSU had turned me down. His exact words were “I have already told them you are in heart failure. What else do they need to know? I just don’t know what more I can tell them for them to understand the urgency in this.” For the first time Dr. Smiley was showing signs of anger and frustration. Things I have been feeling for almost 2 years battling the government.
After talking with my father and telling him what all happened he said I should contact Sen. Kyl like I had done the previous year and my mother concurred. I did as they suggested and contacted the Senator. In response I received a letter stating “Due to my retirement next January I am unable to fulfill your request.” I interpreted that as “Since I am not running for re-election and don’t need your votes, I really could care less.” I was distraught and lost. I felt like I could not get the attention of anyone. I set out to be heard, after all, the squeaky wheel gets the grease. My family was extremely helpful. My cousin Mary and I wrote every news outlet and talk show we could think to write to hoping SOMEONE, ANYONE would take interest. I decided to also write my local congressman, Rep Paul Gosar. My cousin, Karen, saw that I had written him a letter and decided to shout to him on Twitter. Low and behold she is a genius and it worked! He instructed her to tell me to call his office so they could work on it right away. I called the office and Rep Gosar’s office manager Jim said he would be handling my case and to send over an information release. I did so immediately and they inquired right away. Jim e-mailed me two days later stating that I was in queue to get a hearing date and unfortunately that process took 12-14 months. I pleaded with him through e-mail and told him my condition is urgent and that I did not have another year to wait for a hearing. I need surgery ASAP and have needed it for almost 2 years now. He inquired with the SSA again and assured me the case was being expedited. A few days later my step dad called and told my mom we received a strange letter in the mail. The SSA had sent me a letter with my name and address on the envelope but inside was a letter addressed to Sen John McCain regarding someone else’s disability case complete with her name, address and social security number. I panicked. Had they been trying to send me something and mixed up our letters? The next morning I called Jim and explained to him what had happened. He confirmed that they had indeed been trying to send me a copy of the letter he received that morning stating that I was in queue for a hearing and the case was being expedited. I explained that this angered me and made me feel very violated because my personal information, case details and social security number were in some strangers hands who could easily steal my identity. He asked if I could e-mail a copy of the letter and envelope to him so he could approach the SSA with the situation. Later that afternoon my phone rang and my lawyer was on the other end “Christina, we have some really exciting news for you. You’re case has been fully approved by the SSA ODD!”. I didn’t speak. I was stunned. After a minute or two I asked her to repeat that because I was sure I heard her wrong. I wasn’t wrong, it was over, I finally had won. I danced around and high fived my boyfriend and called everyone in my family as well as posted on Facebook. I still believe the only reason my case was approved without going to trial was because the SSA screwed up and leaked my information and were afraid of a law suit, which I am still contemplating. Much later that afternoon I received an e-mail from Jim confirming that they had made a decision but he was unable to disclose it through e-mail until an official letter was sent by the SSA. The SSA office that switched the letters called me that day as well apologizing for what had happened and assured me that they contacted the woman they sent my information to instructing her to mark the letter return to sender when she received it. The SSA was supposed to call me when they received the letter back in there office and two weeks later I still have not heard from them. My hero’s in this situation are Rep Gosar and his team for taking an interest and helping me in the fastest manner I have witnessed in regard to the SSA. I will be forever grateful and will be voting for him in ANY election EVER! If you are in Arizona and in his district you should know he does his job well and actually gives a damn! It will still be a few months before I receive all of my back pay but I am set to receive my first SSDI payment next month. I also qualified for SSI for the 5 months that SSDI will not cover. This means that I also qualified to have Medicaid the entire time I was fighting disability and they will be paying ANY and ALL medical bills that I have incurred in that time. It’s been a long and tiring battle but it’s done and over and I am the victor. Persistence is key.
As a result of my battle with the SSA I have started a petition on Change.org in hopes that the SSA will make it so that adults with complex CHD will be automatically approved for SSDI to avoid getting worse during their battle and taking years to be approved for SSDI. You can sign it here: Approve Disability Claims For Adults W/ Complex Congenital Heart Defects
2. Heart Status – Things remain generally the same for me at the moment. Still in NYHA Class III heart failure, chronic atrial flutter and a severely enlarged right atrium. I will soon be facing OHS in a few months. I will be having three procedures in one, a Fontan Conversion to Extra Cardiac Conduit/Cox-Maze/Pacemaker placement. I am very nervous but trying to remain positive and talking with others that have already had this procedure and are doing well is helping. I have my surgical consult on Wed March 21st. I will meet my lead surgeon, Dr. John Nigro, who is also the director of congenital cardiac surgery at both Phoenix Children’s Hospital and St. Joseph’s Adult Congenital Center. Dr. Nigro will be telling me everything that will happen during the surgery and I will get to ask him my list of questions. I think this surgery has been more mentally terrifying for me than any other procedure that I have had to endure. When I was a child and had to have surgery I had no idea how serious it was and the impact that it would have. I just knew I was in the hospital and that I was only going to eat Goldfish and Cheeze Balls because hospital food was gross. If you are a parent of a CHD patient and wondering how the questions asked to a surgeon will change with adult hood… here is my list for Wed:
- What Pre-Op testing is required before surgery?
- What is the mortality rate of this surgery and has anyone here ever passed during complications from this surgery?
- What is my risk for stroke and thromboembolis?
- How many hours does the actual surgery take, one average?
- How many blood transfusions will I have to have?
- How long will I be sedated and on a respirator?
- Will I have to have a feeding tube?
- Will I have to have a colostomy bag?
- Will my incision be sutured or just glued?
- How long will I be in ICU and how long will I stay in a regular room?
- What medications are “standard” after this type of procedure and for how long?
- Will I have a home health nurse checking on me once I am released to go home?
- When can I return to normal activity and when should I start trying to exercise (walking, attempting stairs)?
- When can I have sex again? (don’t laugh, it’s a valid question and an important one to me! LOL)
I am still adding to this list and I will be writing a blog entry about everything the surgeon told me once I return home.
3. Mental Status – Some days I am fine and some days I am a basket case. I have a lot on my plate at the moment and at times it can be overwhelming. Like I have said before, open heart surgery is more mentally terrifying as an adult than it ever was as a child because I am old enough to realize exactly what is going to happen and all the things that could go wrong.
I am taking steps to help myself in this area. I recently started seeing a psychologist who also has an R.N. I want to be able to talk to someone outside of those that know me to get an objective opinion and gain some better coping skills. After my initial appointment the therapist told me I would need to go at least 2 times per month until surgery. After surgery and I become mobile I will still need at least a session per month to help with the recovery process. I am totally cool with all of this. My main therapy goal is to be confident and positive on the day of surgery instead of being a fearful ball of nerves crying and shaking.
I also set out to find support within the CHD community. I have found a great few friends that are just like me and are very inspirational people. To my ACHD friends Jennifer Watucki, Jessi Goffard, Jenn Constantino and Ryan Wilcox – you guys rock and make me feel like this surgery will be a piece of cake and well worth the initial pain and hallucinations. LOL!
I am also currently in a Facebook group called Adult CHD Patients Answering Parent Questions. I think this is very therapeutic for me. I love helping other people and feel great knowing that someone else is finding comfort and positive reinforcement in me and my experiences with their own CHD struggle.
It’s not sunshine and roses but it’s as positive as I can make it at any given time.
4. Relationship Status – my boyfriend, Gabe, and I recently moved in together as of January. For those of you who do not know, Gabe is an uncontrolled Type 1 Diabetic (this is his actual diagnosis from his endocrinologist) that is on disability like me. Although he has Type 1 he was not diagnosed until he was 21. He has been in the hospital for DKA (diabetic ketoacedosis) more times than he can count. His last episode of illness was in October of 2011. He had a virus and was hospitalized for 3 days because of dehydration. That was the first time in a year he had to go to the hospital and has been doing well since.
He had his first Endocrinology appointment with his new Dr. the same day I had my last check-up, February 13th. Dr. Alamir is very thorough and knowledgable. Gabe liked him and so did I. Right now Gabe has been instructed to attend a nutrition class, a class on insulin pumps, and to have CGM (continuous glucose monitor). We are working these things in as we can. Our doctors are 3 hours away in Phoenix and until we get a car we have to schedule our appointments on the same day around my mom’s schedule.
He has been doing fairly well with his sugar levels since moving here. He still has high sugar here and there but we are forming better eating habits together. He still snacks all the time but is showing some improvement in his food choices choosing to eat healthier snacks instead of just junk (I am so guilty of eating junk too!). We are also learning to cook tasty meals that are low in carbs and that have no sugar. There is never a dull moment with us. Although we each have only one impairment we both live like we have two; me with diabetes and CHD and him with CHD and diabetes. You would think that having impairing health issues would be cause for a lot of frustration and arguments and at times we do snap on each other. However, for the most part we like that each of us has a medical impairment because it’s something we can relate to with each other immensely and really limits the amount of arguments due to crankiness from a medical issue because each of you actually KNOW what it’s like to be frustrated because you feel like shit due to something you have little control over.
It’s not perfect but it’s perfect for us.
That concludes the big update. I have a few other subjects I will be blogging about very soon and be on the lookout for the surgical consult blog if you want to stay up to date with my trip down the road that is OHS!