The miracles in my life!

OK I am finally ready to write about what I have been dealing with in the back ground over here. ha ha ha ha Some of you may have heard my rantings over the past few months about insurance, doctors, etc! Well here is the whole story.

Last summer when it became clear that I needed surgery I went to my Family Doctor to get a referral.  With the insurance we had (state) there needed to be a referral.  Well she referred me to the Core institute, who in turn said my case was to severe and that only a few surgeons in the Arizona are actually qualified to do what needed to be done and they referred me to a surgeon in phoenix, Dr. Chutkan.  They assured me he was good at what he did, but I really didn't have many options as he was the only one that accepted my insurance.  I met with him in September. He reviewed my case and x-rays and proceeded to scare the crap outta me!  He said that my situation was worsening quickly and that surgery was a must and soon.  He asked that I get an MRI done quickly and then come back to schedule surgery within 2 weeks. He made it seem as though the longer I waited the worse everything would be and that we were racing against some clock.

While I was there I also told him that I really needed to have it done before January because my insurance would no longer be covering me by then.  And I didn't have the means to get other insurance as of yet. (we were planning on going with liberty health share, but they do not cover preexisting for the first year. I did not have a year to wait) He was aware and said that we for sure needed to do it before then anyways. 

As I was leaving I tried to set up my next apt to come in with my MRI,  and they refused to schedule me until I had MRI in hand. I was irritated cause I already had an apt to get it done that nest week and knew that if they would just schedule me I would have it! But I get it it's their job and they don't make office policies. So I left without scheduling another apt. The one that was supposed to go over surgery and set a date and all that.

The following week right after my MRI I called the surgeons office from the parking lot of simon med imaging. I told them I had my MRI and that the Dr wanted to get me in quick as possible (his words) cause I needed surgery soon!  The lady said that they were booked until dec. 21st!  I Told her about my case, the insurance lapsing in January and that the surgeon asked that I come back in 2 weeks and she still refused to set me up sooner than end of December.  I set the Appointment after trying to argue and plead with her, but at this point I was out of options as he was the only Surgeon both qualified and covered by my insurance.   I decided that I would call every week and see if they had any cancellations and try to get in sooner.

The following week I called the office 1 to see if they had a cancelation and 2 to figure out what they wanted me to do with the MRI.  Send it in?  Keep it til my apt?  No one ever told me!  They did not answer the phone. So I left a Voicemail. The first of many. It went unanswered.

The following week I called again left a voicemail and got no reply. My breathing was starting to become harder and my heart was doing funny things and lets not even get started on the pain I was in that continued to get worse.  I called weekly to tell them all this left voicemails and NO ONE called me back... like EVER.

I kept having what I called breathing spells.  I would randomly not be able to get enough oxygen. Usually followed by walking, trying to go up the stairs, picking up things on the floor, chasing a kid. you know normal things ha ha!

I kept calling into the office no one answered or returned my calls still! Finally I decided that I needed to go to the ER when this happens again cause they were getting scary!  30 min - an a few hours of gasping for air, feeling weak and dizzy having spasming lungs.  Not to mention the heart palpitations.  This was what the surgeon had warned me would happen if I waited to long! 

I was talking with my Grandma and she told me that I needed to go down to St. Joseph's ER since it was attached to Barrows spine and neurological institute. and she had heard amazing great things about a surgeon there that specialized in Scoliosis.  Well about a week or 2 before thanksgiving it happened again as I was trying to get the kids to school. So I headed down to the ER with my step dad. I am sooo grateful he was with me!  I was there from 9 in the morning while they ran test after test and finally admitted me into the hospital at 7pm that night.

They were able to say that my bad breathing was in fact being caused by my severe scoliosis I had 3 curves 45/93/45 degrees (neck, thoracic, and lumbar). That it was just to hard for my 1 lung, that wasn't totally crushed by my deformed ribcage,  to be able to expand enough, if I over exerted myself making me hyperventilate. (It feels more like my lungs spasming when I try to breath during these episodes.  They said that I needed to try and take it easy until I had surgery to correct the issue. 

Also big miracle was that Dr Kakarla the surgeon my grandma had told me about, that I really wanted to get his opinion on my case, just happened to be on call that day!  He looked over my case, ordered more xrays and scans, and sent an intern to inform me that if it were up to him, he would want to fuse my spine from t4 all the way down into Si joints (my pelvis).  I was shocked!  I expected a fusion but not that long.  But I had been researching this Dr and my current Surgeon and new that Dr. Kakarla was WAY more than qualified so I trusted his opinion.

The hospital told me they sent word to my surgeon that I was admitted into the hospital and why. I never heard from his office.  I got home that next night and still no word from them.  I called them the next day and still no one answered I left a voicemail and was frustrated that I had been in the hospital now and my so called Dr was no where to be seen or heard from.

 I decided to look at more reviews for this "doctor".  I was not surprised when I kept pulling up the same thing.  They never answer the phone, they never return calls. and this was coming from people who had already had surgery with him!  That was a scary thought. That if I went with him, after surgery  he still would not return calls. HECK NO!  This was too big of a deal to let him touch me at this point. It's my spine!

I had lost all faith in him and his team.  He had already abandoned me! It had already been months of me calling and getting no return calls back.  Months where my condition worsened and he did nothing. The only doctor covered by my insurance, abandoned me. I was terrified!  I now had to try an fight my insurance (an uphill battle) all on my own and win before January. It was now end of November. 

I called again and canceled my December appointment.  Well I tried, really I left a voicemail that no one checks so I wasn't even sure it got cancelled.

I called Dr Kakarla's office to figure out what I needed to do in order to see them instead. They were so amazing and helpful from day 1! They said we needed a referral from my primary care dr. and a pre-authorization from the insurance, and that my primary care Dr needed to file it.  They sent this all over to my PC.

This next step would take several weeks of me on the phone all day. If only I had known this going into it!

I called my PC Several times that nest 2 weeks trying to get them to submit the papers and they kept saying they never received anything. eventually I asked Dr Kakarla's office to call them and make sure they got the papers and they happily agreed and sympathized with my that this was ridiculous!  That same day the papers were filed I called my insurance company to make sure they got them and to check the status and how long it would take to process.

Now it was their turn to jerk me around.  They said they would not approve the request and that the only way they would is if I got my old Surgeon, mr. never answers the phone, to write a letter to them as to why he was not treating me any more. YEAH RIGHT!  The man hasn't answered a single phone call in months! How was I going to 1 get ahold of him and 2 get him to admit that he had dropped the ball big time. I told them this and their response was "Sorry That's all we can do"  Words I was going to start hearing from everyone for the next little while. 

I was so beyond stressed out. I had lost 15 pounds in 2 weeks due to stress. I wasn't sleeping, I had no appetite. I was a wreck physically and emotionally.  I don't even know how I was keeping it together! This was all also during halloween, thanksgiving, and Christmas!

So I decided that I had 2 options. 1, I could try and get private insurance that I could not afford, or 2, I could try and switch my state insurance plan. You see Dr. Kakarla took AZ state insurance, he just wasn't with Care First. He took Mercy Care. All run by the state system. Same thing different name on the card. REALLY!? Ok so I call my insurance company and ask if I can switch from Care First to Mercy Care. I tell them why. They say "we can't do anything about that, but, call Care First and tell them its an emergency and they should let you out of their care so we can place you with Mercy Care.... hopefully."

I called Care First. They refused to release me!  I cried... no sobbed. Told them about everything that had been happening and all that I was facing. that my lungs and heart were slowly being crushed and that all I wanted was to be able to have this surgery, so I could live, be a mommy, wife, and person again. and they said "Sorry there isn't anything we can do." I hung up just utterly shocked and hurt and scared. OK, one option gone. now it was private insurance or I was going to be left to die.

I started calling companies only to realize that not one of them could insure me because I was an individual and not going through an employer... WHAT?  Yes that is right thanks to freaking OBAMACARE the only insurance available to those of us that are not covered under an employer is ambetterhealth.  Guess who takes that insurance... Not anyone that I have found! So I called a friend of my mom's who worked in insurance to confirm this for sure and she did. I was out of luck.

I remember hanging up the phone and crumpling to a pile of brokenness on my living room floor as I sobbed and sobbed.

I had been trying for MONTHS to try and get anyone to help me. Someone to care. Someone to say yes, I can help you with that. But no. I was out of options and so so so lost.

It was at this point I think Brock had to leave for work.  He was upset and frustrated with what was happening and really hated having to leave me home sobbing. After he left, I started talking to my heavenly father. I don't know if I would call it a prayer. I had said plenty of those all day everyday during this ordeal.  This felt more like whining haha! 

I just started saying why Father?  why?  Why can't I get the help I need?! Why have you left me here to deal with this?!  I need you and I don't feel you here!!!! ..... what do I do now.....  I feel so alone.  why? Why?...on repeat

After a little bit my phone rang. It was Brock. I figured he was calling to check on me make sure I hadn't decided to run in front of a bus ha ha ha. So I answered mid sob. And found out that he was crying as well. I really did not want to hear anymore bad news. He never cries!  I was tempted to say NOPE!  Keep your bad news to yourself I can't handle anymore! Or just hang up LOL I was certainly at the end of my rope. Instead I took a big breath and decided it was my duty to be strong for him like he had been for me. And I said "what's happened? Are you ok?" 

Brock could hardly get out what he was trying to say so he just said "No, its good." then continued to cry. Finally he started to talk and told me that he had talked to his boss Justin, (that wonderful man) about everything that we had been dealing with. Justin then told Brock that he had gotten insurance a little while back for the employees and that we could sign up that day!  And it wasn't to crazy un affordable monthly and they had a relatively low max out of pocket compared to other companies I had been researching.

But the best news about this was that Dr. Kakarla was in network with this company! Miracles miracles! 

As soon as I hung up with Brock I started crying again and sunk to my knees.  But this time, in relief happiness, and gratitude. I prayed to my heavenly father to thank him for such a huge blessing right when I needed it most, and to apologize for being so weak before and doubting that I would get help from him. I know He knows me, and loves me.  He is my Father! Of course he would help me, and comfort me.  I was just to distraught to see it before.

But the miracles where not over yet!

I set up an appointment with Dr Kakarla as soon as our insurance info came in. But that whole time I was freaking out about being fused to my pelvis!  What was my life going to be like not being able to bend or twist except from my hips. AH!

I started to pray that I would be at peace with it all. That I would just be able to let go and accept the things I cannot change.  Oh I wanted that so bad.

I was both excited and nervous about my appointment because I would finally be moving forward. But nervous cause I just could not fathom what I was about to go through! They were going to go over the surgery and what to expect and all that and I was scared to hear it! 

A couple days before the appointment the office called me to remind me and also to request that I bring in new full spine x-rays just to make sure nothing had changed since the last set a couple months before. 

I told Brock (my expert x-ray taker) and he had me come down to his office after dinner to take them.  When there he said "You know what, I am going to give them a whole lot more than just a full spine x-ray!  They need to have every angle, bend, position possible.  That way there is no confusion about the surgery."  Bless this man of mine!  He proceeded to take 26 x-rays of my spine. from literally every angle possible! 

When we showed up to the Dr's office with the CD they were so impressed!  The came into the room and told us that because of the x-rays they were able to print a 3-d model of my spine. I SO wish I had taken a picture!  It was so cool to see a life size model of my crazy twisted spine. They are going to be using this to practice on until the surgery date!

Next he told us that also because of the extensive images that Brock took he no longer thought that I needed to be fused to my pelvis. The x-rays showed little to no deformities in my lumbar spine and that when I bend it straightens on its own. Meaning that after surgery it should straighten on its own because it was a compensation curve. He wanted to change the fusion to be only from t2 to l2 or l3 if he must when he is in there. I am still SHOCKED! This was the best news I have ever gotten! I mean it is still a super big fusion, but at least my pelvis wasn't going to be fused too!

I will still be losing some of my flexibility in my spine. Most of it will still be fused. But leaving a portion of my lumbar unfused will mean that I can still bend some and eventually after therapy and relearning my body, and the fusion fixating like it should I will be able to move somewhat like a normal person! I cannot be happier with this new little miracle just for me. Even though it seemed like an impossible task, I dared not ask for a different way. Yet Heavenly father knowing me so well, inspired those around me to give me the best possible outcome.

I now have a surgery date of February 12th at 5:30 am. I am scared, but excited! I know this is what I have to do and I know that my surgeon and his team are more than capable and that all I can do is prepare best I can and let my Heavenly Father handle the rest. What a comfort! 

So thanks for listening to my long story an rant. I will try to keep everyone up to date about things as they happen!