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Countdown to Kidneys Being Included.......

Saturday, April 30, 2011

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.....

Thursday, April 28, 2011

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!

Sunday, April 24, 2011

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........

Saturday, April 23, 2011

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.

Friday, April 22, 2011

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!

Wednesday, April 20, 2011

Flowers and Chocolates....are girls best friend


Oh Alyssa, you def know the way to my heart. Thank you for the beautiful flowers. They really cheered me up! Also the chocolate covered strawberries were magnificant!! I did however, had to share with Chris and Madeline but I really wanted to eat all of them. That's why some are missing from the box! I love you and can't wait to see you in Iowa!!!! xoxo

God is So Good!

Lat Friday I had a pelvic ultrasound that showed some mysterious mass. Doctors sent off 3 tests to test for cancer. All 3 tests came back normal....halleluiah! But today I went back to the gynocolgist (mine) and asked him to do a repeat on the pelvic ultrasound. Whatever was there Friday, is gone today. I truly believe God healed whatever that was. I am so happy and want to praise God for his wonderful work. He is my true healer and the leader of my medical and transplant team.

I went to a healing service at my church Sunday and I have faith that God healed me form this afflicition on this night. I am so thankful to serve a wonderful, forgiving and healing God. He is so awesome.

Next thing will be to let Him guide my surgeaons through transplant and all of the preliminary things to come!

Tuesday, April 19, 2011

CANCER FREE

Just heard from my doctors office that whatever is on my left ovary, is NOT cancer! All tests came back normal. I am so completely relieved and prasing God. I truly believe he healed me of whatever it was at the healing ceremony I went to Sunday night. I believe in God's power to change and make things happen for the good. I must admit, a cancer scare is unlike any other kind of scare. It doesnt get much scarier than that. I can deal with my blood disease and kidney failure but cancer shakes you to the core. They still arent sure why my left ovary is enlarged but its not the c word! Now i can just look forward to the next 2 months gong by and getting that kidney!!!!!

Sunday, April 17, 2011

Unveiling of the 2011 T Shirt designed by Matthew Nokes

Healing

Last night I was feeling really down, so I called my super pastor Bro. Charlie. He is so nice and easy to talk to. And he makes me feel better about things. In our conversation, he told me about a healing ceremony we will be having at church tonight. We both agreed that this is God's work. How ironic that I am awaiting news regarding the possiblity of cancer and the day before I am to get the news, we are having a healing ceremony. I truly believe this is God's magical and mysterious work. I will be at that heling service and I will be walking through the church doors with lots of faith. I truly believe that whatever is going on in my ovaries will be healed by God. He doesn't want me to suffer anymore. Through my suffering I have learned alot about myself, God and the world. But I also know He wants me to live a happy and pain free life. So, if you are in the need of healing of any kind, bring it tonight to God. We are at St. Paul Methodist Church. Great things will be happening and if you are in need of heling, I invite you to join us.

Saturday, April 16, 2011

A Book Idea

Everyone keeps telling me I should write a book. Well, I am going to start off in an area I am most comfortable in, children. Oh how I would have loved to have had a book to help me explain dialysis to Madeline. So, last night we sat down to write our book.I wanted to see it and hear it through her eyes. I used the words she used to describe different events. I just think that since more and more young people are going through dialysis, there needs to be a resource for those of us who are also parents. I think I have found an illustrator (because I only draw stick figures)and I need to find a publisher. So if any of you have suggestions please comment here or on my facebook page. I am really excited about this project! And it will be a great distraction from the ovary drama and pre transplant anticipation!

My favorite PD nurses and Social Worker

Friday, April 15, 2011

Don't Stop Believing....

Yes, this is my favorite Journey song but also the theme of my life today. Just when you think things can't get any worse....it just might. First I went and saw my fabulous PCP today and he reassured me everything would be okay. I left his office with feelings of hope and optimism. Then I went to the gynocologist office, who I like alot too. They performed a pevlic ultrasound to try to see more of my ovary and the news I got is a bit grim. There is 1 in 1000 chance it could be ovarian cancer. Ok, kidney failure I can handle, rare blood disease I can handle, but cancer too! I will know the results of the tests Monday. But here is where I stand. I stand affirmed in my faith that I DO NOT have cancer and that I will be one of the 999 cancer free. On June 23rd, I am getting a kidney transplant and nothing and I mean NOTHING is going to stop me. So, I just wanted to update yall on the latest but please know that cancer is not going to be added to my list of diagnoses. I refuse to let. I have faith in God that it will all be okay. And if it is cancer, I would rather find it now BEFORE the transplant rather than take ths risk of it ruining my new kidney. God has a plan. I am going to trust in Him to lead me through this because afterall, He led me to it! Please keep me in your prayers and pray for no cancer! xoxo

Updates

Today Friday April 15, I have two doctors appointments. The first with my PCP to address the enlarged ovary he saw on the CT scan and the second with a gynocologist to address the bleeding associated with the ovarian cyst. We are very worried because when I thnk cyst, I think pus and infection. And the last thing I need right now is an infection in my peritoneal cavity. That could shut down transplant and possibly make me go back to hemodialysis (which I have had a talk about with a good dialysis friend and she reminded me of the horrors of hemo). So, I do not want to go down that road again. On Monday APril 18, I will have my pelvic ultrasound. I was hoping they could get me in today because I feel like this is an urgent issue, given all of my renal and hematology history but nobody gets in a hurry around here. I guess if I bleed out, I bleed out. "Health care Professionals" that I have been in contact with seem to not give a flip about this situation. Maybe it's not a big deal but I am losing a lot of blood and if I have to get a transfusion over all of this, I am going to be mad to say the least. A transfusion could mess up my match with Lindsey. I have to wonder, Why??? Everything was going along so smoothly and now 2 months before the BIG day, everything is trying to fall apart on me. I know God has a plan, I just wish I could undersand it. I am very anxious and frustrated feeling and tired of going to doctor appointments. If you are well, not sick, take a second and thank God for your health. It is so precious and nothing else matters if you don't have your health. Today I am not living. I am existing. And I hate that feeling and want to get back to the land of the living. I miss my old life.

Thursday, April 14, 2011

Not Mom of the Year

Out of all of my roles I miss the most, it would be mom. Sure, I still get to do lots of things with her but not to the degree I am happy with. She is such a happy child and I know seeing her mommy sick is going to mold and shape a big part of who she becomes. She already tells me she wants to be a doctor when she grows up. Her words exactly, "I want to be a good doctor when I grow up!" My 5 year old, sadly already knows there is a difference in the quality of doctors. I feel like seeing m sick has taken some of her innocence away. And I hate that I can't be there for her...as much as I would like. For example, it is 7:00pm here on a beautiful spring evening. Madeline and about 5 of her friends are outside playing with Chris and where am I? Stuck to my dialysis machine. I know I am having a pity party. There are many moms who are much sicker than me and can't do anything for their children...but it's all so unfair. I didn't have a child to not raise her. I want to be involved in every aspect of her life. This week I have sucked! I forgot to dress her up for spring pictures and had to miss a field trip today because of all of my medical issues. And it gets worse! I haven't even been able to eat lunch with my child once this year. I hope someday she can look back and not have resentment towards me. But I know how important all of the little things are. Every second with her is a precious gift from God. She is a precious gift from God. Maybe if I feel good tomorrow, she can play hookie and we can have a mommy and Madeline day. I think I need it more than her, truth be told!

Enlarged Ovary

Well, I dont have a picture to share but the CT scan showed I have an enlarged ovary and probably has burst (ovarian Cyst). That does explain alot. The pain and bloating and bleeding. Went to Memphis and did two manual exchanges, which were both bloody still, but at least my nurses got to see it. They are also going to culture my bags to make sure it's not peritonitis. Also had labs drawn. Tomorrow I will go for a pelvic ultrasound....that doesn't sound fun! Anyway, it doesn't sound too life threatening and hopefully will resolve itself soon. Please pray for complete healing in my body.
xoxo

Still Not Normal

Well, this is what came out of me last night. My stomach hurts really bad. I am waiting to find out when the CT scan will be done. I pray this goes away soon because I feel really bad.

Wednesday, April 13, 2011

On the Bright Side

I found out today a fellow kidney friend has found a match! I am so excited for Michael and his family. He is such a great guy and I pray he doesn't have to experience dialysis before his transplant date....whenever they schedule it. So there has baan a silver lining to my cloudy day! Please pray for Michael, his family and his donor. I am so happy for the blessings that are coming his way!

Blue...

I think this blog is more therapeutic than informative at times but today I am using it to vent. I am so blue and sad and depressed. I hate peritoneal dialysis and I hate hemodialysis. At least with hemodialysis my house wasn't crowded up with all of these boxes and bags of solution. And when I was sick, people usually paid attention. Being on home dialysis has its "perks" but I feel so alone. Like I am the only one taking care of me. I am strongly considering going back to hemodialysis for the last two months leading up to transplant. I am going to think about it and weigh my options but if things keep on like they are right now, I won't make it for two more months. Right now, that feels like an eternity. For those of you who understand dialysis lingo, I am going to put on two red bags tonight to try to get this fluid off. If it doesn't come off, then I might go back to hemo.....just not in this town. It is so sad that we live in a place where it is hard to find good medical care. I cannot wait till the day I do not have to rely on them so much. The more you have to rely on someone, the more likely they are going to let you down. And anyone who knows me knows I am not a pessimistic person but the world of dialysis has skewed my view of the world (medically) to some degree. All I know is this, I feel like poop. And I don't have time to feel like poop. I have a 5 year old and a husband who need me and I have a job, which I love and am so blessed to have, that needs me. So whoever can fix me needs to do so ASAP. Because two months is a long time when you are waiting on getting your life back. And it's not just me affected. Everyone around me suffers too! Do they not teach this kind of stuff in medical school? There needs to be a class on treating the patient like a human being. My animals get better care at the Vet! Yeah, I said that!

CT of Abdomen and Pelvis

I am bleeding from somewhere. If you cut your arm and it is bleeding, don't you typically try to make it stop or put a bandage on it? That seems like the reasonable thing to do! So, I am bleeding (internally) into my drain bags when I do my dialysis and my Memphis clinic seems to think this is no big deal. I am sorry, but when blood is coming out of me and I do not know where it is coming from or why....I want answers! And I know I tend to worry BUT I do have a rare blood disorder that has reaked havok on my body. I don't like be brushed off and made to think it's no big deal. If I am bleeding internally, and I am I want it to stop. Thank goodness for my PCP here in Jonesboro. It may end up being nothing at all, but at least he is willing to look into it. And for the LAST time. I am a 31 year old woman. I know what a mestrual cycle is and you usually have blood coming from your vagina! Not a tube draining out of your peritoneal cavity. I am smart enough to know that I am NOT having a period....despite what some may think. I am lethargic, bloated, have high blood and low heart rate and now I am pissed because I have been feeling like crap for 24 hours. Whatever happen to doctors wanting to be extra careful and sure everything is okay? I am so ready to not be a dialysis patient anymore. I am tired of fighting the system just to stay alive. I am just freaking tired! I want to know why I am bleeding and fix it! This is so ludacris! So, that is how I REALLY feel about it...in case anyone wants to know! Oh and TOMORROW I will get a CT scan of my abdomen and pelvis....if I don't bleed to death before then.......

Where is this blood coming from?

This fluid is suppose to be crystal clear...and they definetly are not! These are my bags from my over night dialysis!

My Dialysis Helper


He is perhaps the most important member of my "medical team"! He very willingly helps me by hooking my machine up everynight! He is such a wonderful man! xoxo

Tuesday, April 12, 2011

As Jill's donor, I felt the need to share my story with those of you that have followed Jill's story thus far. I am Lindsey, obviously Jill's donor. I am a 6th grade literacy teacher in Gosnell. My most important job is being a mother to the three most amazing little girls I have ever known, Adleigh(7), Emerson(3), and Tatum(1). I have been married to the man of my dreams, my high school sweetheart Erick for 10 years. We have just adopted our only 4 legged baby, Lola, an English Bulldog. Yes my hands are full! I will start from the beginning. I met Jill about 12 years ago in my husband's families flower shop. We worked together for a short while. After working together, Jill and I would only see each other when our husbands had a work function. We didn't really keep in contact. About a year and half ago, I found Jill on Facebook and first realized she was sick. We began talking again and I kept up with her story through this blog. Jill is one of those people that I have always naturally felt drawn to. She is the friend that I can go for a long period of time without taking to and then pick up the phone and call and feel as though we have talked every day. I have only met a few of these people in my life. As we began catching up with one another, I began having an overwhelming feeling or nudge that kept me thinking that I should look into possibly donating. I am a very rational person so of course when I kept feeling this, I did everything a normal person would do, I kept ignoring it. However, the notion of giving a kidney to Jill just kept popping up more and more each day. I began doing a little research about kidney donation. During this time, I also began praying. I strongly believe in the power of prayer and rely heavily on my faith to make all decisions. As I continued to push down this idea, God kept revealing to me more and more that this is his plan for me. I am a very spiritual person but consider myself realistic too. I am not a person who walks around saying God led me to do this and do that. There have actually only been two times in my life that I know God has revealed his plan for me amidst my defiance. Once was when knew I would marry my husband, we were very young. And then there is this revelation. It is so extremely hard to explain to people why I am doing this. I have heard just about every questioning excuse as to why I should "think this through". I think the reason it is so hard is because of the shape of this world. We have become a society that is so consumed with ourselves. We are constantly asking ourselves, what's in it for me therefore making it hard to recognize just a true blessing when it's right in front of us. I have one simple answer to those who want to know why I would do this: It's God's will for my life. I am following a commandment...it is that simple. Why Jill? Why NOT Jill? True it may appear that I "barely" know her, but I can assure you, time is not an important factor into this friendship. I cannot think of anyone more deserving than Jill. She has a true compassion for everyone she meets and she honestly wants to help expand the kingdom of God. She is an advocate for many different groups in which she wants nothing more than to help. Jill is also a mother and a wife. She deserves the chance to be the mother and wife that she wants to be. She deserves to be free from illness!!! So, this is the WHY. I wish it could be more of a Hollywood story for you but it is what it is. I want to thank each and every one of you that have been praying for my family! This is a family affair and I appreciate the sacrifices they are making so that I may follow through on this journey. Please continue to pray. Jill- you inspire me more than you can ever know. Your determination, faith, and perseverance are impressive!!! Love, Lindsey

Prayer Request

A good friend of mine with ahus, named Linda had her kidney transplant surgery today. I have not recieved any updates, but please pray for her and her donor...her sister. Lindsey and I will be in this same boat very soon and I know all of you have been praying for us. SO please just send up a pray for Linda and her sister, as they fight the good fight against ahus...and will beat it, today!!!

The heroes of my Neighborhood

There are so many people I need to thank for their help in taking care of Madeline for me. In our case, it definitely takes a village!!

To Shannon: Thank you for always being there in a pinch, taking and picking Madeline up from school and letting her come over when I am sick so she doesn't have to be around a sick mama. I will forever be grateful and Love you!

To Teresa: You are always willing to step in and take Madeline home to feed her or give her a bath for us. Sometimes feel like we abuse you but you are always so cheerful and upbeat and we appreciate you helping us.....we especially love your home cooked meals....aka DUMPLINGS!!!!!

To Mrinda: You already have a houseful of children but you are always so willing to help me out too! You are so sweet to help me with Madeline when I need someone to watch her. You are the best!

To Shelby S- Thank you fro volunteering to watch Madeline while I am at transplant and thank you for picking hr up from school for me when I am in a bind! xoxo

To Kelly G- Thank you for helping me with Madeline over spring break and our upcoming transplant. Knowing she will be in good hands helps ease my worry....a little bit. But even though I am having major surgery, I am sure I will call y'all everyday. Thank you for treating her like one of your own and doing special things with her.

Matt and Kasey- Thank you for babysitting Mad for us so Chris and I can actually have a (semi-normal) night out. She loves you both so much and I know you guys love her too!

To Ms Amy and Ms Shelly: Thank you for allowing us to come late everyday due to my dialysis. And extra thank you to Ms Shelly for helping me get Mad out of the car on the mornings I am very sick. You two rock!!!

GiGi- A million thank yous for coming over at the last minute because I have puked all night or am too sick too take care of myself or anyone else for that matter. You always try to rearrange your schedule and I greatly appreciate all you do. I know you have a lot to juggle right now, but you are doing a pretty awesome job at it!

Chris- Thank you for EVERYTHING! Form working a hard job and then coming home to take care of me and Madeline. Someday soon our lives will be normal and average and I promise I will pull my own weight.

Thank you all!! We love you and appreciate you very, very much!!!!

Normal, I think not!


So today has been wacky. It started off good. I got ready and went to work after dropping Madeline off at school and had 3 patients to see. By the middle of my second patient, I could feel my blood pressure spiking. And it would do me no good to take my meds at work because I would be curled up in the corner taking a nap before I knew it. So I left after my second patient to come home and rest. Madeline had a doctors appointment this afternoon and we have already rescheduled a million times so I was determined to make this appointment. I don't know if you can tell by the pic of me with the bike but I have about 15 extra pounds, Some fluid, some fat on me. I have got to drop this weight. By the time we left the Children's Clinic, my feet felt like two lead bricks and my legs ached so bad. I am in definite fluid overload and need to get this fluid off soon. Red bags will be here tomorrow!!!

So I came home and did a manual exchange. These are the dialysis exchanges I do sometimes during the day if I am feeling particularly yucky....like today. And as you can see the first bag was red!!!! Definitely not the normal, clear urine color is suppose to be? I called my PD clinic and they said it could be early stages of peritonitis or a ruptured cyst. I have been on PD for over two years now and NEVER gotten peritonitis, which is a bad infection of the peritoneal cavity where I do my dialysis. This could be bad. And if it is not that, then where did this cyst come from? Either way something not normal is going on. I did a second exchange and it wasn't as dark red....more a pink lemonade color. I had to post pics because in my two years of PD, I have never seen anything like this before. Hopefully it's nothing to be too concerned about.....but you never know.

As of now, I have no abdominal pain, except from vomiting a few minutes ago but that's nothing new! Oh pray peritonitis stays away from me! I am so close to transplant!

Monday, April 11, 2011

My 1950's model




And no I am no referring to me! Although I feel like it some days. This 1950 Schwinn bike is such a smooth ride. Chris got it for me about a year ago. We are looking to find one for him to ride too. It gets the job done though, for now. And I would like to add that I had some spare time tonight while Madeline was at a party, I rode for the second time today. That's a total of 4 miles!!! Hopefully I can keep my momentum going. I really want to head into this surgery as physically fit as possible. I know PT is going to want me to get up pretty fast after my surgery and I don't want to let them down....and I want this recovery to go as quickly and smoothly as possible. I think I am going to start lifting small free weights to try and build up my upper extremity strength. My only problem is sticking to a routine. But I have more than enough GOOD reasons to stick with this one! Plus I have my Kidney Walk in June and I definitely want to be able to keep up with everyone walking this year!

Riding in the rain

SO I am really serious about getting my body in a better state of shape than it is right now, before the transplant. So I went for my daily ride. Started off good but it started to rain on me and I thought, "oh well" I wont melt! So I rode my two miles today in the rain. It felt really fun too, like being a kid again! For lunch I had a small salad with tuna. Gotta keep that protein up, which my albumin is always high and that's a good thing. I think as long as I blog about my exercise it will keep me motivated. I might be ready for a marathon before its all over.....LOL

Sunday, April 10, 2011

Day 2

Exercised and ate well today. Nothing for breakfast, salad for lunch and grilled chicken and salad for dinner. Then I road 2 miles on the bike around the neighborhood. I am tired and ready for bed. Just thought I would blog daily to keep me motivated...you keep me accountable!!!

Saturday, April 9, 2011

The devil!!!!!!


So, these are so delightfully delicious I just had to post a picture of one to remind me of how wonderful yet bad they are for me. Good bye pickles! Until I can process them and not require dialysis!

Lots of Little Updates

A lot has happened in the past week. Lindsey was able to find out a tentative date to schedule the surgery and it is on June 23rd....if nothing gets in the way. Hopefully both Dr. Stewart (her surgeon) and Dr. Reed (my surgeon) will both be okay with that date. SO very much excited about that.

Found out this week at PD clinic that my hemoglobin is up from 7 to 13....which means it's way too high and my blood is as thick as ketchup. SO, we are holding on my weekly epo shot. So no shots for a bit!!! YAY

Had a scare yesterday with my left forearm! I have been sick all week and Friday was feeling better so Madeline played hookie from school and I took her to the movies. While there, I indulged in some yummy popcorn and very salty but oh so good pickle. Came home and this weird bump popped up under the surface of my skin. It looked and felt like a blood clot. So I made a mad dash to my doctors office who thought it looked pretty suspicious too and sent me to the hospital to have an ultrasound performed on it. Good news is there is no deep vein thrombosis (clot) but it may have been a superficial clot.....which they say is not life threatening. Anyway, they gave me a baby aspirin to be cautious. Oh how i look forward to the days that I can take my child to do something as normal as go to the movies and not have it end in the hospital! Soon, very soon.

And today, I began my "try to get in shape before the surgery" exercise. I was able to walk 1/2 mile and I think that is pretty good for someone who has been in the hospital twice in 7 days and been puking her guts up ALL week. Maybe tomorrow I will do a mile!

Thanks for all of the prayer this past week. Hopefully things are looking up!

Friday, April 1, 2011

In and Out

Some days I wonder if kidneys will ever be included again? Some days everything seems so wrong that the thought of having a kidney seems like a far fetched dream. But my faith is what keeps me hanging on. I don't know how I would feel if I thought there wasn't a chance to have a normal life again. I guess I got the blues today after a scary and sick yesterday.

My blood pressure spiked on me yesterday and despite my efforts, kept climbing until I ended up in the ER at around 6 o'clock. Now everyone knows how I feel about St. Bernard's but I gotta tell ya, they had it together last night. All of this is thanks to a cute little nurse named Heather. She expedited my case! I got in an ER room, labs, chest xray, ct scan, EKG, met with PA, Met with Doc and got meds and back home to my machine by 8:30. It pays to know the ER nurse!!! But seriously, she had everything coordinated so perfectly that after one test, I went straight to another....ruling out another possible brain bleed. The blood pressure was just out of control and I don't know what caused it. A big THANK YOU to Nurse Heather for taking such good care of me. If I had had her all this time, what would I have blogged about?

I was dialyzing by 8:30 and started to get sick around midnight. I started vomiting and it lasted all night. Today I feel like crap but I am recovering okay. I know someday I will have a kidney and life will be normal and back to calm....but today that day seems like light years away.