Well today I got some things figured out. Sort of. My Mom has done a lot of the hard work for me. I kind of gave up for a few hours yesterday. I threw in the towel. I had to work yesterday (thank God because if I stayed home I would've lost my mind even more so!). Before work I had to call Medicaid, yet again, to clarify that I should have Share of Cost (SOC). I had gone to the lady doc on Monday to get clearance for transplant, and they ran my insurance and it said again that I had HMO Medicaid. I was fuming, this was all supposed to be resolved on Friday. But by the time the appointment was over I was too late to call that day.
So Tuesday came and I had a few hours in the morning to do my treatments and get ready for work. So I called Medicaid to see what happened and where the mistake was - AGAIN! After being on hold off and on for 45 minutes (mind you, I'm on my cell phone) they told me I don't have SOC and I won't have it until June. Okay, I had been told that before. But I was also told they changed it. It didn't help that the lady was completely rude to me. She didn't understand that each time I talk to someone there, I hear a different story. Well, today I finally talked to DCF patients services and she was able to clarify everything. When I applied for the SOC, my husbands info was left out. I did not intend to 'mislead' them. We had asked several times while filling out the application at the DCF office if we should include him. Each time the 16 year old attendant declared that because it was for me, he was to be left off. So we did just that. This is the whole reason things have been so confusing since then! Well, I gave them my husband's information and things should be cleared tomorrow.
I have to reach my SOC (which I found out is actually $1849) most likely in the beginning of the month for it to show that I have SOC, otherwise it will show I have Medicaid. So tomorrow I need to pick a pharmacy and get all my drugs ordered so that it can go into effect. Hopefully, this will allow Tampa to see that I have SOC and not Medicaid. It'd also help if the financial lady there would call me back, but that's a whole other blog. Are you confused yet? LOL....I hate that its this complicated, as if my health isn't complicated enough.
In the end, I've learned a lot in the past few days. I have an amazing family. My Mom took over and fought for me when I thought there was no use. She called Senators, e-mailed everyone, and made millions of phone calls. She is stronger than I am in so many ways. I'm not saying I don't think I'm worth the fight, but when it gets hard sometimes its easier to not deal with it. She gives me the strength to re-focus and refuel and get back on my game.
Tomorrow, my ear will hurt from the many phone calls I need to make. But I'm ready. I want these lungs, I want to breathe when I laugh. I want to be able to laugh. I feel I hold back because I know it will lead to choking. I want to be able to chase my dogs in the yard like they beg me to. I want to be able to pick up my baby cousin and chase the other at the same time. I'm ready. When I get down, and those nasty people try to keep me down, I need to bring myself back to those thoughts. I'm blessed to have the love and support I have. And I love everyone back just as much. Even if I never get listed- I know I am loved.
Wednesday, April 28, 2010
Sunday, April 25, 2010
The Last 3 days...
Wow... A lot has happened in the last 3 days, and not all the best of news either. I got the "call" from Tampa General after they had their meeting about whether or not to list me. I was told health wise I was the absolute perfect candidate. But, due to insurance, I'd have too many issues. The good news I took from that was my body is strong enough for the surgery, which means chances of a smooth recovery will be really good. My insurance is something that since I was little, no matter what type I had, has always given me problems. With transplant, the issue is not enough medicinal coverage. A lot of the medication post-transplant HAS to be name brand drugs. Science just has not caught up yet with generics.
So when I was granted "Medicaid" we thought it was the share of costs (SOC), and everything would be fine. But it wasn't. I was granted full blown Medicaid, which I do not qualify for in any way. Ironically, this hurt me instead of benefited me. I won't be able to be listed until I have share of cost Medicaid, which got updated as of Friday morning (woot woot!) The share of cost, for those who don't know, is when I have prescriptions that exceed a certain amount of my income then Medicaid will cover the entire month's bill. Now that is pretty easy for me, seeing as one drug is $1,916 and another is $3,000. Those are the high dollar ones. We're hoping since its been updated and changed I will be able to be listed now. I guess I'll find out sometime this week? Otherwise, I need to wait until Jon's insurance at work is upgraded in June, which may then go into effect in July. Sheesh! I swear, if you weren't born into the madness that is the medical and insurance field, then you could get so lost and drown in it. It's sad, thinking of those who do.
On another note, Friday was also kind of rough because I had had a horrible stomachache for days. (Actually it started the Sunday before, but I dealt with it). I'm going to get personal here, but I think it's important that people know what patients with C.F. have to go through - as graphic and unpleasant as it can get. This stomachache was not getting better, if anything worse. I was going to the bathroom regularly, just not completely. This can be pretty common in CF'ers. Cystic Fibrosis is an over-production of mucous and it is not limited to the lungs. It affects every organ. So, I had an intestinal blockage. Painful...very, very painful. After going to the doctor, because I was vomiting now because I was so impacted, I had to get 3 enemas. NOT fun. In fact, horrible. I also had to drink this icky purple stuff that tasted like what I assume battery acid and grape soda taste like. This caused mayhem...but in the end I felt better. Thank God I have a Mommy who pushes me to my edge sometime, because after enema #1 I was ready to give up. My insides felt like they were going to explode!
After that long, treacherous day I slept almost 11 hours straight. I was so physically exhausted I was in tears. Its so odd how your mind can be completely fine and positive, and your body wants to do something completely opposite. I guess that's what keeps you going though. The positive thinking. The prayers. And of course, knowing my Dad was wanting to take me on the boat the next day. =)
So when I was granted "Medicaid" we thought it was the share of costs (SOC), and everything would be fine. But it wasn't. I was granted full blown Medicaid, which I do not qualify for in any way. Ironically, this hurt me instead of benefited me. I won't be able to be listed until I have share of cost Medicaid, which got updated as of Friday morning (woot woot!) The share of cost, for those who don't know, is when I have prescriptions that exceed a certain amount of my income then Medicaid will cover the entire month's bill. Now that is pretty easy for me, seeing as one drug is $1,916 and another is $3,000. Those are the high dollar ones. We're hoping since its been updated and changed I will be able to be listed now. I guess I'll find out sometime this week? Otherwise, I need to wait until Jon's insurance at work is upgraded in June, which may then go into effect in July. Sheesh! I swear, if you weren't born into the madness that is the medical and insurance field, then you could get so lost and drown in it. It's sad, thinking of those who do.
On another note, Friday was also kind of rough because I had had a horrible stomachache for days. (Actually it started the Sunday before, but I dealt with it). I'm going to get personal here, but I think it's important that people know what patients with C.F. have to go through - as graphic and unpleasant as it can get. This stomachache was not getting better, if anything worse. I was going to the bathroom regularly, just not completely. This can be pretty common in CF'ers. Cystic Fibrosis is an over-production of mucous and it is not limited to the lungs. It affects every organ. So, I had an intestinal blockage. Painful...very, very painful. After going to the doctor, because I was vomiting now because I was so impacted, I had to get 3 enemas. NOT fun. In fact, horrible. I also had to drink this icky purple stuff that tasted like what I assume battery acid and grape soda taste like. This caused mayhem...but in the end I felt better. Thank God I have a Mommy who pushes me to my edge sometime, because after enema #1 I was ready to give up. My insides felt like they were going to explode!
After that long, treacherous day I slept almost 11 hours straight. I was so physically exhausted I was in tears. Its so odd how your mind can be completely fine and positive, and your body wants to do something completely opposite. I guess that's what keeps you going though. The positive thinking. The prayers. And of course, knowing my Dad was wanting to take me on the boat the next day. =)
Thursday, April 22, 2010
A Day of Rollercoasters
Yesterday was pretty grueling. I woke up with a horrible stomach that has been haunting me for a few days and a "To Do" list that was never-ending. I had a lot of loose ends that needed to be finished-including calling Social Security for an appointment. For those who know me, this is a task I DREAD! Every time I had called in the past to the main office I'd go through the menu as best as I could to get to a person. Well, once I thought I was where I'd get a person, it'd say "All operators are busy at the moment. Please try your call later." AND HANG UP ON ME! I was baffled! I tried for 20 minutes just to get hung up on?! So yesterday, having to call S.S. was not one of my favorite things to do. I got the local office number and gave it a try.
Believe it or not, I was able to reach a person! I explained to her that I had been told about a month ago how much I needed to earn in the first quarter, and that once I reached that I needed to make an appointment. Almost immediately she fought me. She told me, I don't qualify for anything if my husband and I were still married and I was still working. So I patiently tried again to explain to her that I had been TOLD by someone in her office to call and make an appointment, and that person was fully aware of my situation. That's why she asked me to come in, my case is a little more complex. I was declared disabled, but because I chose to work and get married, I became "un-disabled" (if there is such a thing?). The operator was still refusing to hear me out, and kept saying that she couldn't give me an appointment if I was just going to be denied. OMG!
This is when I lost it, I started crying...trying to hold back the tears I basically begged her for an appointment. That's when she got nasty. "Ma'am don't start crying- that ain't going to work here. Stop your crying and listen." I couldn't believe it. Stunned, I started SOBBING. I was out of control. I've been told different things by every single person I had talked to at Social Security and DCF, and it all seemed like no matter what no one cared enough to want to hear me out and help. My sobbing slowly subsided long enough to get an appointment next month. That means its in next quarter (since 1st is Jan-Mar) and I've already began 2nd. So if they say I still haven't worked long enough, then that means I'll have to push myself a little harder to earn the precious amount they want - so that I can become "disabled" again.
This brings me to another point. I was lucky to be healthy enough to make something of my life. I went to college, I built a career doing what I love, and married a man that I love. I didn't shortchange the life I had been given just because I had a life-altering disease. I did and do everything I can, in the past and present. For this, the government no longer sees my having Cystic Fibrosis as a disability. This is a progressive disease. I knew that when I began my studies, when I married my husband. But this never stopped me from trying to postpone the progression. I did a pretty darn good job of that up until recently. People who work with the Disability office should learn some compassion, and not just see if you can categorize each person. Where is the reward for trying and succeeding? I ask this sarcastically, because I have been rewarded in other ways. I love my life and I don't regret a minute of how I have lived it. That's my reward for now, until I get my new lungs =)
Believe it or not, I was able to reach a person! I explained to her that I had been told about a month ago how much I needed to earn in the first quarter, and that once I reached that I needed to make an appointment. Almost immediately she fought me. She told me, I don't qualify for anything if my husband and I were still married and I was still working. So I patiently tried again to explain to her that I had been TOLD by someone in her office to call and make an appointment, and that person was fully aware of my situation. That's why she asked me to come in, my case is a little more complex. I was declared disabled, but because I chose to work and get married, I became "un-disabled" (if there is such a thing?). The operator was still refusing to hear me out, and kept saying that she couldn't give me an appointment if I was just going to be denied. OMG!
This is when I lost it, I started crying...trying to hold back the tears I basically begged her for an appointment. That's when she got nasty. "Ma'am don't start crying- that ain't going to work here. Stop your crying and listen." I couldn't believe it. Stunned, I started SOBBING. I was out of control. I've been told different things by every single person I had talked to at Social Security and DCF, and it all seemed like no matter what no one cared enough to want to hear me out and help. My sobbing slowly subsided long enough to get an appointment next month. That means its in next quarter (since 1st is Jan-Mar) and I've already began 2nd. So if they say I still haven't worked long enough, then that means I'll have to push myself a little harder to earn the precious amount they want - so that I can become "disabled" again.
This brings me to another point. I was lucky to be healthy enough to make something of my life. I went to college, I built a career doing what I love, and married a man that I love. I didn't shortchange the life I had been given just because I had a life-altering disease. I did and do everything I can, in the past and present. For this, the government no longer sees my having Cystic Fibrosis as a disability. This is a progressive disease. I knew that when I began my studies, when I married my husband. But this never stopped me from trying to postpone the progression. I did a pretty darn good job of that up until recently. People who work with the Disability office should learn some compassion, and not just see if you can categorize each person. Where is the reward for trying and succeeding? I ask this sarcastically, because I have been rewarded in other ways. I love my life and I don't regret a minute of how I have lived it. That's my reward for now, until I get my new lungs =)
Wednesday, April 21, 2010
The Road Ahead
Last Wednesday and Thursday I had a LOT of testing done to see if I'm strong enough, yet sick enough for transplant. I had an EKG, echo, esphogram, x-ray, CT, arterial blood gas, 13 vials of blood drawn, a bone density scan, a right heart cath, and a TB test (I think thats all). I met with the social worker, the pyschologist, the pulmonolgist, the dietician, and the surgeon. They all seemed very nice and competent. They explain the donor lungs could come from GA, FL or Puerto Rico.
Once the team receives a call that there may be a potiential donor, they (the surgery team) run tests on the lungs. If it is decided they are good enough, I'll be called in. I have 2 hours to get to the hospital. Once there, they'll run tests on me and make sure I'm ready. Let me tell you - mentally I couldn't be more ready. I went through a period where I was more scared than anything. But now, I realize more than ever how beautiful life and breathing is. I look back to when I was 16 in marching band and realize, man I had some strong lungs then... But of course, you don't know what you've got until its gone. I am ready to breathe.
So anyway, the surgery can take anywhere from 10-12 hours. YES - HOURS! I'm told it's because CF lungs are sticky from the mucous, and we need to be cleaned out a little more. But, I'm also told we do the best with recovery and quality of life afterward =). They have 2 options for the incision sites. They can go under my breast line (called a clamshell) or cuts on my sides - it pretty much depends on my stability when I get there. They usually do under breast for CF patients in case I need to go on the heart-lung machine and they need to do an emergency bypass (kind of neat - kind of scary). So when I wake up, I'll have 4 chest tubes draining the excess fluid from my chest cavity,2 small tubes for drainage, I'll have a ventilator tube in my throat and my arms will be strapped down. I'll also have a catheter for the potty thing, lol. I was warned when I wake up, they will be yelling at me to "BREATHE BREATHE BREATHE!" This is to get me breathing with the ventilator, and not against it. They told me usually the 1st or 2nd day they will take me off the vent, and I'll be BREATHING! On my OWN! With NEW lungs! How cool is that!
I get teary eyed thinking of the miracle of this, really. Someone's family was kind enough to give this gift of air. Of breathing freely. Of living. It's phenomenal! Beautiful! So after that I'll begin an intense rehab. Walking, stretching, using the stationary bike. I have to get strong. Especially my lower body because the first 6 months I need to let my scars heal and becareful not to strain. I can't drive until I'm off pain meds (which will be at least 4-6 months) and I'll need 24 hour care the first 6-8 weeks. Kinda weird, because I'm very independent - or I used to be until I got so sick. I know having new lungs will make me want to do so much, but I'll be restricted. Only for a bit, then I can dance! =) I'll be on a new set of meds: steroids, anti-rejection, laxatives, pain meds and some profilatives (sp?) so I don't get infections. No more salad bars and I'll have to be an even bigger germaphobe than I am now... but so what! At least ya know I'm clean!
So all of this is what I have to look forward too... and I'm excited! I want to run a marathon with my friend Mike, I want to swim with dolphins (getting over a fear of fish), I want to ride my bike on the beach, I want to dance until my feet hurt! I have so many things I want to do...I want to be able to work and give back. I really understand my patients - I've been one my whole life! I think about doing social work for post transplant lung patients too. More school of course. Once the energy I'm giving to breathing can go to living - I'm set. I understand there are challenges I may face, but so what! I face them now... and I'm surviving. I want to be able to absorb every ounce of life! I'm still a newlywed. But right after I got married my health declined rapidly and drastically. So I'm ready to REALLY enjoy my husbands company. Not as a caregiver, but as my husband. So many wonderful things to look forward to.
I want to mention how grateful I am to those who have joined/donated to my cause (Keep Ashley Kennen Breathing). This is the life I face, and for you to not have any idea what it's like in my shoes, yet be compassionate enough to still understand is very admirable. I always say that everyone else is a hero in my eyes because really we are all faced with challenges that may be unspoken. Some greater than others. I want those who are invovled in my cause to know my challenges and triumphs.. no hold backs! I'm grateful to be alive, and ready to be living my life to the max! Thank you...from the bottom of heart!
Once the team receives a call that there may be a potiential donor, they (the surgery team) run tests on the lungs. If it is decided they are good enough, I'll be called in. I have 2 hours to get to the hospital. Once there, they'll run tests on me and make sure I'm ready. Let me tell you - mentally I couldn't be more ready. I went through a period where I was more scared than anything. But now, I realize more than ever how beautiful life and breathing is. I look back to when I was 16 in marching band and realize, man I had some strong lungs then... But of course, you don't know what you've got until its gone. I am ready to breathe.
So anyway, the surgery can take anywhere from 10-12 hours. YES - HOURS! I'm told it's because CF lungs are sticky from the mucous, and we need to be cleaned out a little more. But, I'm also told we do the best with recovery and quality of life afterward =). They have 2 options for the incision sites. They can go under my breast line (called a clamshell) or cuts on my sides - it pretty much depends on my stability when I get there. They usually do under breast for CF patients in case I need to go on the heart-lung machine and they need to do an emergency bypass (kind of neat - kind of scary). So when I wake up, I'll have 4 chest tubes draining the excess fluid from my chest cavity,2 small tubes for drainage, I'll have a ventilator tube in my throat and my arms will be strapped down. I'll also have a catheter for the potty thing, lol. I was warned when I wake up, they will be yelling at me to "BREATHE BREATHE BREATHE!" This is to get me breathing with the ventilator, and not against it. They told me usually the 1st or 2nd day they will take me off the vent, and I'll be BREATHING! On my OWN! With NEW lungs! How cool is that!
I get teary eyed thinking of the miracle of this, really. Someone's family was kind enough to give this gift of air. Of breathing freely. Of living. It's phenomenal! Beautiful! So after that I'll begin an intense rehab. Walking, stretching, using the stationary bike. I have to get strong. Especially my lower body because the first 6 months I need to let my scars heal and becareful not to strain. I can't drive until I'm off pain meds (which will be at least 4-6 months) and I'll need 24 hour care the first 6-8 weeks. Kinda weird, because I'm very independent - or I used to be until I got so sick. I know having new lungs will make me want to do so much, but I'll be restricted. Only for a bit, then I can dance! =) I'll be on a new set of meds: steroids, anti-rejection, laxatives, pain meds and some profilatives (sp?) so I don't get infections. No more salad bars and I'll have to be an even bigger germaphobe than I am now... but so what! At least ya know I'm clean!
So all of this is what I have to look forward too... and I'm excited! I want to run a marathon with my friend Mike, I want to swim with dolphins (getting over a fear of fish), I want to ride my bike on the beach, I want to dance until my feet hurt! I have so many things I want to do...I want to be able to work and give back. I really understand my patients - I've been one my whole life! I think about doing social work for post transplant lung patients too. More school of course. Once the energy I'm giving to breathing can go to living - I'm set. I understand there are challenges I may face, but so what! I face them now... and I'm surviving. I want to be able to absorb every ounce of life! I'm still a newlywed. But right after I got married my health declined rapidly and drastically. So I'm ready to REALLY enjoy my husbands company. Not as a caregiver, but as my husband. So many wonderful things to look forward to.
I want to mention how grateful I am to those who have joined/donated to my cause (Keep Ashley Kennen Breathing). This is the life I face, and for you to not have any idea what it's like in my shoes, yet be compassionate enough to still understand is very admirable. I always say that everyone else is a hero in my eyes because really we are all faced with challenges that may be unspoken. Some greater than others. I want those who are invovled in my cause to know my challenges and triumphs.. no hold backs! I'm grateful to be alive, and ready to be living my life to the max! Thank you...from the bottom of heart!
Tuesday, April 20, 2010
The gift of breathing
This blog was born out of my desire to inform, to journal and to share my experience with Cystic Fibrosis. I am praying for the gift of a lifetime.The gift of breathing. I hope that you will join me on my journey. It might be a bumpy one, but it will literally be the ride of my life!
Cystic Fibrosis (CF) is a progressive lung disease and in the United States affects over 30,000 families. My family is one of them. At the age of 9 months, I was diagnosed with CF and my mother was told I may not make it past the age of 5. With all of the medical challenges put before us, my family and I fought hard to get me to where I am today. I’m 26, I’ve graduated college, have a career and I am happily married. As wonderfully blessed as I have been, I’m now reaching a new crossroad in my life: double lung transplant.
Once I am put on the transplant list, I am told that it is, on average, about a 3 month wait. Being all of 5'2" and 95 lbs, I, however, will need pediatric lungs. This saddens me because I know that my life will continue because a child's ended. But, I vow to live that life to the max. To not waste this amazing gift and to make that child proud! But, because of the type of lungs I need, my wait could, unfortunately, be longer.
Cystic Fibrosis (CF) is a progressive lung disease and in the United States affects over 30,000 families. My family is one of them. At the age of 9 months, I was diagnosed with CF and my mother was told I may not make it past the age of 5. With all of the medical challenges put before us, my family and I fought hard to get me to where I am today. I’m 26, I’ve graduated college, have a career and I am happily married. As wonderfully blessed as I have been, I’m now reaching a new crossroad in my life: double lung transplant.
Once I am put on the transplant list, I am told that it is, on average, about a 3 month wait. Being all of 5'2" and 95 lbs, I, however, will need pediatric lungs. This saddens me because I know that my life will continue because a child's ended. But, I vow to live that life to the max. To not waste this amazing gift and to make that child proud! But, because of the type of lungs I need, my wait could, unfortunately, be longer.
This procedure is my second chance at life. There are hurdles left to overcome and more that will undoubtedly appear. Our biggest hurdle to being placed on the transplant list right now is fund raising. Insurance is a wonderful yet frustrating thing. Transplant is partly covered, but the costs for medication and some treatments far exceeds what is/will be covered. But hurdle or not, I refuse to let my second chance at life pass me by. I am scared, anxious, nervous, ready and going to wait as long as I need to for my second chance! Look out world, here I come!
Unfortunately this is something that plaques so many in-need patients. Please consider organ donation and fund raising for myself, for the many other in need patients out there or for a loved one that you may know. Thank you from the bottom of my heart!
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