Updates for end of April

We are getting closer and closer every day. Got my last (hopefully) meningitis vaccine yesterday. So I should be good to go in that area. Talked with my BCBS Health Insurance Coordinator yesterday and she told me about this amazing program called Pilots For Christ. They have a chapter in Paragould and they fly patients all over the country for various reasons for free. So, I gave them a call and it looks like Lindsey and I will be flying home from Iowa! That is pretty cool. God has provided so much for us throughout this journey.

I am working on getting accommodations for my family (me and Chris) and her family (Lindsey and Erick) and a place to stay while in Iowa. This has proven to be a daunting task. Who knew there is a Scholarly Writers Conference in Iowa at the University at the same time we are scheduled to be there. There are no guesthouses, Bed and Breakfast or reasonable hotels for extended stay available. And of course, nobody from the hospital can help me find anything. Looks like we will be staying 30 miles away from the hospital, but my peeps gotta have a room. I know where my bed will be for the majority of the time, but Chris, Erick, my mom and Lindsey eventually have got to have a nice place to stay. Yesterday was very stressful working on this but I think I have it figured out.

Please continue to pray for both families involved. It is very funny because at work we talk about "how our engines run". For example, I tend to feel like I have a super high strung engine that’s always running and Lindsey to me, has a calm smooth running engine. Our personalities mesh so beautifully. She is my calm during the storms.....

Easter Morning 2011

Only Receipients Will Understand

Do you remember that song from the 90's, "How do you talk to an angel?" Well, my question is, How do you thank an angel? Only other transplant recipients will truly understand this question, but how do you thank your donor enough? My donor, for example, doesn't expect a thing from me. She has told me I don’t have to tell her constantly how much I appreciate her because she knows how grateful I am. But I feel this "burden" for lack of better words to let her and the world know how wonderful and magnificent her gift to me is. I don’t want to lay my head down at night until I know Lindsey knows how special she is. So how do we as recipients of the greatest gift of all, life, ever feel like we said thank you enough? I wish I was Oprah rich and I could send her kids to college and by her a huge house and send her family on lavish vacations as a way of saying thank you. But I am not Oprah rich and knowing my donor, she wouldn't accept any of that. She is the most humble and down to earth person I have ever met. I wish you all could know her...for you would be blessed just by her friendship. So no matter how many hugs, thank yous and sweet notes I write to her, I will never feel like I've done enough. But she doesn’t expect anything in return. She blows my mind. So to all my other recipient friends out there, how have you handled this? This, I might add, is the most wonderful "burden" to have. I am so grateful and cannot wait till June 23rd! Oh how I am thankful for Lindsey!!!!

Sensational for a reason......

I have been so blessed in so many ways over the last 2 and a half years. One area of my life has been through my job. I am celebrating 3 years with Sensational Kids today. They had barely gotten to know me before I got sick. But boy have they been good to me. There are not many places that would let you work 3-4 hours a week. I am so grateful to them. It has been my escape. You see, in all areas of my life, I am the patient, the sick one. At dialysis, the doctor’s visits, transplant stuff....I am the patient. In my family, I am the sick one. At church, I am the one on the prayer list. At Madeline's school, I am the sick mommy. All areas of my life I am the sick one except at work. At work I get to be Jill the occupational therapist. I get to be the one helping others. And even though I only get to do it a few hours a week and some weeks not at all because I am sick, it is an outlet. It makes me feel like I am still needed in the world. Of course my family needs me, but this is a place I can call my own and put my talents to use. I just wanted everyone at Sensational Kids how grateful I am to them and how excited I am to be getting the opportunity to come back strong in the fall! My fellow co workers are truly Sensational......but also very patient, kind and understanding. I am so appreciative to you all! So don’t forget me over the summer. I'm gonna get that kidney and come back in the fall and be the best OT I can be!!!!! xoxo to you all!

Seven Pounds

2 corneas, liver, 2 lungs, heart, bone marrow, blood, plasma, skin and of course 2 kidneys. That's what we are capable of donating. Some while we are still living and the rest when we pass. I saw this movie when it came out in 2008. And it was very powerful and moving then. Little did I know that later that same year in December, that movie would have even more significance in my life. I watched it last night for the second time and it totally takes on a whole new meaning. It is very hard to watch without shedding many tears. I'm not going to spoil it for anyone who hasn't seen it, so if you have not seen this movie, SEE IT! I don't even know what to say about it right now because I am still crying and pretty numb. All I can think about is Lindsey. How do people like Lindsey and Will Smith's character become the people they become? How do they make the decisions they make? If it's not God then I don't know what it is. It is amazing to me. People like Lindsey. They are saints. They are the people who walk into your lives and forever change it. They impact your life so dramatically that you question, why me? Why am I so lucky to know Lindsey? I am just one of 26 million people affected by kidney disease. So, how come I got chosen by God to get to know Lindsey and be blessed by her gift? A gift I am so grateful for. But how does God or the universe decide who gets a second chance? I am a sinner, we all are, right? But I get a second chance that so many will never get. So what do I do with that? I will tell you what I will do with that. I will honor my God who has graciously allowed me, a sinner, the privilege of knowing Lindsey Rouse. I will live my life so that the world knows He is my savior and redeemer. And I will thank God every single day of my life for the Lindsey Rouses of the world. Because without the Lindseys, the Jills don't get a second chance. Without the Lindseys, the Madelines have to grow up without mommies. But Lindsey with one decision changes mine and my family’s entire future.

I know this isn't my usual post but that movie hits home hard. And makes you look at donors in a whole different perspective. Thank you God on this Easter morning for the Lindseys of the world. Because of the Lindseys, my world goes on........

Health Dept Update

It appears that the Arkansas State Dept of Health has decided to follow the new guidelines and recommendations of the CDC and "allow" me to get my second meningitis shot for my pre transplant work up. I am so appalled at the BS I have to go through just to get everyday things like a vaccination. It's a joke. This whole Health Dept thing is a joke. I hate to sound so negative but I am tired of the battles over petty things. And I am not the only one. There are other chronically ill folks out there fighting these same ridiculous battles on their own. I am thankful God gave me a voice and a backbone to stand up for myself and get things done. It is just ridiculous with some of the people I have to deal with. I do not appreciate underpaid and uneducated non professionals at a health dept telling me I cannot get a shot when I know the facts. After two and a half years I am fed up with the crap. I'm gonna change it...one battle at a time. And once I get my kidney I will continue to advocate for others who need a voice.

Menigitis Madness

About a month ago, my transplant team informed me there are a few vaccinations I need prior to transplant. Well, if you know me, you know my stance on vaccinations in this country but I would do and will do ANYTHING for a kidney. So I went and got a flu, pneumonia and meningitis vaccine. Not all 3 together of course. Yesterday, my transplant team called and said I needed one more dose of the meningitis vaccine for two reasons. 1.) My blood work showed I do not have enough immunity of it built up in my system and 2.) The CDC just came out with new guidelines saying anyone with a compromised immune system (as I will be post transplant) needs a second dose. And I quote from the CDC website, "Meningococcal vaccine should be administered to persons with the following indications:
Medical: A 2-dose series of meningococcal conjugate vaccine is recommended for adults with anatomic or functional asplenia, or persistent complement component deficiencies. Adults with HIV infection who are vaccinated should also receive a routine 2-dose series. The 2 doses should be administered at 0 and 2 months." I clearly need and trust my transplant team to get this second dose. My doctor’s office does not administer this vaccine. So, I had to go to the dreaded and I do mean dreaded health department where you wait half of your life just to be seen, to get the first shot. And getting that first shot was a fiasco in itself because that shot is not typically given to anyone over the age of 18....which I am. Anyway, I call to get a second appointment and the nurse had to call the doctor who is the director over the Arkansas State Dept of Health and he/she denied my request to get another shot. Is it just me or is this ridiculous? How hard is it to know the CDC regulations...and shouldn't the Health Dept of ALL places know what the CDC recommends? I find it appalling that the medical field makes getting anything accomplished an ordeal. I don't know if this is a country wide problem or if Arkansas is just behind or if my particular corner of the world is so behind, but seriously. Top doctors on my transplant team and the CDC both recommend I get this shot prior to transplant, but some doctor in Arkansas has the power to veto it just like that. Hey, Arkansas Doctor Director Person, try googling CDC and search meningitis vaccine......you might learn something. And thanks for making it so difficult for me to get a vaccine that could potentially save my life.Job well done buddy!