Jill's Kidney Blog Follow by Email: Type in your email address below and click submit

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

Saturday, July 16, 2011

New Blog Address

My new blog site is www.kidneysnowincluded.blogspot.com
I hope all of my readers from this blog will now follow me on my new journey with my new life. It promises to be an uplifting blog celebrating life.

Launching of a New Blog

I have been using this blog, kidneysnotincluded for years now. And honestly, it is very difficult and bitter to type those words "not included". The fact is, kidneys are included and I feel it is time to start a new blog celebrating the transplant, recovery and new life that I have so graciously be given. I haven't decided on the official new blog name yet, but as soon as I do I will post it here. I will continue to check this blog and might transfer new posts from the new blog to this one as well. I don't want to lose any readers because you all have been so supportive and uplifting to me throughout the entire process. So as soon as I get the new blog up and running I will post it here and on facebook too! Thank you for your continued support and prayers!

Thursday, July 14, 2011

3 Week Anniversary!

Wow 3 weeks already! It is flying by. I cannot believe this time 3 weeks ago, I had spent half the day in the OR and was beginning the recovery process. What a glorious day June 23rd was! And I think I have lived more in the last 3 weeks than I have in the last 3 years. I still am amazed at how much that tiny, bean shaped organ is responsible for. It is so essential to life. I have been working hard this week at raising my potassium and phosphorus levels. They have been low since the transplant. It is understandable though. For three years I couldn't have either one so now I am trying to build them back up in my body. So I am enjoying a variety of foods. I have my meds down to a science now. I take approx 15 in the morning and 9 at night. That's not bad at all! And that is all I have to worry about doing all day....well I pee a lot but that is a blessing! Every time I go, I thank God. When I sit back and reflect on the long journey that got me to this point it actually brings a smile to my face. Someone asked me if I could rewrite history, would I delete kidney failure from my story? Absolutely not! Don't get me wrong it was a long and hard three years, but I learned so much. And I look at life very differently now. It has changed every aspect of me. I have grown spiritually and developed a closer relationship with God. I don't know that all of that would have happened without the kidney failure. It made my family tighter and I gained a sister! Just far too many blessings to name so I would not change a thing about the last three years. God had a plan all along. So to my beautiful Lindsey, Happy 3 Week Anniversary! You have given me more in three weeks, than I could every have imagined!

Tuesday, July 12, 2011

Post Transplant Pics

It just keeps getting better and better....

So we are home and settled back into normal life. It feels really good. Better than I could have ever imagined. I knew it would be good but I had no idea it would be this good, this fast. It's all the work of God. There is no other way to explain it or try to understand it. He helped align everything so perfectly. During dialysis, I felt impatient and that I wanted thing to move faster at times, but looking back He was fast at work setting everything up. I couldn't have planned it any better if I had tried. Now that we are home and not in Iowa, I don't have that safety net of seeing Dr. Thomas regularly. But he is still very much a part of my life. I get labs drawn every Monday, Wednesday and Friday by a Home Health Company. I have a fabulous nurse who comes to my house and she accesses my portacath and gets the labs to the hospital for me. The lab there processes it and gets the results to Iowa. It is very convenient and is helping keep me well. It saves me from being exposed to lots of sick people at a clinic or infusion center. I really appreciate that. The same nurse will also be administering my Soliris treatments every other week. So, everything is going smooth and I don't think I have every felt this healthy before. I am enjoying so many things that I took for granted pre kidney failure. I can eat whatever I want (minus sushi), I can stay up past 8 o'clock, I have energy to play with Madeline, I am not sick when Chris comes home from work and soon I will be returning to work! Life is so amazing. You never know how wonderful it is until you are hanging on to life by a thread. The smallest, simplest things in life can bring so much pleasure and happiness. It is truly an amazing gift that Lindsey has given to me. And not only have I changed, but my entire family is different. It's like we have all been holding our breath for 3 years and on June 23rd we all breathed a sigh of relief. Madeline is happier, Chris is more relaxed, my Mom and Dad seem more relaxed and my brother looks like a huge weight has been lifted. We are all changed and affected by Lindsey's blessing. Words will never convey how life changing this kidney transplant has been, but as she says, "it's a game changer!" Yes, Lindsey, I'm back in the game!!! A million thank yous!!! xoxo

Friday, July 8, 2011

My Dream Team

It took a lot of people to make this transplant happen. There were people directly involved and then there were others who helped out with Madeline and my fur babies while we are gone. Thank you to The Fryes, The Sams, Matt and Kasey and my Mom and Dad for watching Madeline. Thank you to Marcia for keeping Georgia. Thank you to Matt and Kasey for keeping Greta. Thank you to Mom and Dad for keeping Gus and Gracie. Thank you to Candy for helping with the dogs when Mom and Dad came to Iowa. Thank you to Dr. Sara and Jonesboro Family Pet Hospital for keeping our Meow Meow, Claire!

Thank you does not even begin to show my appreciation for my transplant team in Iowa. Dr. Alan Reed is the Chief of Transplant and led my transplant surgery. Apparently a few things didn't go so smooth in the OR but with his talents and wisdom, he was able to make it a successful surgery. Nothing is textbook when it come to ahus, but he transplanted a beautiful and healthy kidney into my body. He is one of the nicest and most sincere people I have ever met and I am so blessed to have had him as my surgeon. In fact, he is probably the only person in the world I would trust to transplant me. He is so knowledgable about the ahus and I was truly blessed to have found him!

Dr. Christie Thomas is the ringleader of my transplant protocol. He has the most calming and compassionate personality of any doctor I have ever met. His knowledge of ahus is so comforting and I know at all times he has my best interest in mind. He visited me everyday in the hospital and even when I was hyped up on steriods and out of my mind, he was the only person who could console me and make me feel better. I trust him with my life. I am so blessed to have had such a brilliant doctor on my team.

All the nurses on the transplant floor were awesome. They were very compassionate, yet pushed me to try harder when I felt like I couldn't do anything. There were so many of them but they all took the best care of Lindsey and I and I couldn't have asked for a better hospital experience.....well, maybe not be so crazy when I first got on steriods. It was so funny. When I woke up from surgery, I had been give a 500 mg dose of steriods, which is alot! And I kept talking about my mom and saying she was trying to kill Tupac! Everyone got a kick out of that!!!!

There are so many behind the scenes peole who made this transplant happen. Some I don't even know. Trisha, my pre-transplant coordinator, Luann and Kim, most post transplant coordinators. The nurses on the infusion floor who gave me my Soliris, so many people worked to make this successful. And I am forever grateful to all of them! Especially Trisha, who has put up with me for almost two years of phone calls, worrying and questions!

And Last but not Least, my Lindsey! Without your generosity and truly miraculous gift, none of this would have happened. I still think about it daily and am amazed by your brvery and your kindness. People like you are a rarity and I am so blessed to know you. You have changed and saved my life. I feel reborn and can't wait to do good things with my life. I call you my angel and hero and yet that doesn't even begin to describe how wonderful you are. But you have stolen my heart in a way nobody else ever can. You literally laid your life on the line to save mine and I am forever grateful and humbled at your generosity. I hope someday I can change someones life for the better in the way you have changed mine. You are my hero, my angel here on earth! And I truly love you with all my kidney!!!!!

And God! He was in that OR and been by my side for the last 3 years. After hearing what went on in that OR, there is no doubt He was there and guiding my surgeons hands and decisions. He has been by my side through it all and I know He was the true leader of this endeavor. This whole thing is a miracle. We have all witnessed a miracle and the glorious works of our God.



Thursday, July 7, 2011

No Foreign Tubes In My Body

YAY!!!! All foreign tubes, caths and stents have been removed from my body. Yesterday (7-6-11) I had the stent in my bladder removed and the drain in my side is out! It feels really nice to not have any tubes coming out of my body. I look like a normal person again! 3 years of having some weird tube or cath coming out of me is finally over! Having the stent out didn't hurt although it wasa embarrassing and looked like it should have hurt. And oddly the drain did not hurt coming out either. My nurse in the infusion center was also able to access my portacath yesterday too. I have a special cream I rub on it 30 minutes before Soliris, and it numbs it. I felt the needle prick my skin but it didn't hurt. I am glad to know that it works. I will be getting Soliris at home every two weeks.

Friday, July 1, 2011

First Pee!!!!!

Well, it is offically offical! The foley cath was removed and I have peed in the potty! I absolutely love the sound of MY urine hitting the water in the toilet. Music to my ears! I have already peed twice within the hour so I am sure I will pee at least 15 times today!!!! It is so exciting! I don't think I have ever been so excited about a body function. This is truly an amazing time in my life and the lives of those closest to me. Again, thank you Lindsey! You have given me such a sweet and miraculous gift! I will never be able to thank you enough for this. And to God be the Glory, who had this whole thing figured out and planned just perfectly. He knew Lindsey would be my angel to the rescue even before I went into kidney failure. To me, that is such an amazing event and anyone who doesn't believe that God is in total control, well I just don't know how anyone doesn't believe! Praise God from whom all blessings flow! And now my urine flows!!!!

Friday July 1. 2011

Today is a pretty big day. I go back to the hospital to have labs drawn this morning. After that, this very uncomfortable foley cath FINALLY gets to be removed. I have been peeing like a race horse but today will be the first day I actually pee in a tiolet. I am a little nervous about it because my bladder has not had to work for three years! I hope I remember how to do it. I bet it will feel really good! Then this afternoon, I have my Hickman cath in my chest/nect area removed and my permanant port placed. This is what we will use from now on to draw labs and administer my infusion drug Soliris. So please keep me in your prayers today! Best part about today though, my brother and his girlfriend are on their way to see us in Iowa and are bringing my sweet Madeline! I haven't seen my baby in three weeks!!!! Can't wait to hug and love on her!!! I pray todays procedures don't wipe me out and make soreor tired. I just want to enjoy having my family here!!!!

Wednesday, June 29, 2011

It really happened!

I think part of my brain is still in shock! I stayed up til 9:30 tonight doing whatever I wanted because I can. I haven't done that in years. I still look at my stomach and am amazed that there is a kidney in there....and it works! I don't know how long it will be before it actually all sinks in and feels normal. All I know right now is I like this new life that as been given to me. I feel like I just got out of prison or something. I spent the evening in Lindsey's room hanging out with her and her sister. Everytime I look at Lindsey, I see this glowing circular object hoovering around her head. I still can't believe she did this for me. I love the way my body feels and that just feels good! Once all the extra caths and tubes are removed, I know I will feel even better! I feel so good, I might just make Chris take me shopping tomorrow!!!

Discharged! 6/29/11

Will def being getting out of hospital today. Hope everything goes smoothly. I will be back Friday to have the foley cath removed.....YAY and also have the Hickman cath removed out of my chest/neck area and have my port which will be my permanent way of getting soliris placed. So, its time to start packing up the hopsital room and get ready for the hotel! Maybe I can spend some time with my sweet Lindsey before she leaves. I am trustung in God that even though I am nervous, He knows whats best and if it is time to go, then it is time to go! I will leave after my Soliris treatment today!

Update June 29, 2011

I am either going to have to figure out a way to change the name of this blog........or start a new one with my new life!
Today might bring changes. Doctors were talking yesterday of possible discarge from hospital. I still won't be free to go to Arkansas but I can at least get out and enjoy Iowa...which is a beautiful place. I think this part of Iowa is one of the U.S.'s best kept secrets.
Why amm I nervous to leave hospital? I still have a foley cath placed. My bladder hasn't had to work in two and a half years so it needs time to catch up and remember what to do. I also have a drain coming out of my side to drain off fluidand lyphmphatics from my abdomen. Both of these tubes are really uncomfortable and I would like to see them gone asap, but I want my bladder and abdomen ready too. Also, my hemoglobin is on the low side. It might just be from the surgery but I would like to see this number climb. So far it is holding steady. I might have a small amount of hemolysis go on as well. Ths is not a good sign but it could also be from the surgery itself. I would just like answers before I leave the safety net of the hospital, doctors and nurses! On the bright side, my creatinine is 0.8. When I entered the hospital it was like 11?? This is just proof at how awesome Lindsey's kidney is. My blood pressure is running slightly high but we think with time it will level off to a regular and normal number. All I can compare this to is having to leave the hospital with your newborn for the first time. I want to protect this new kidney and will at all costs. It is so precious to me and I have been so blessed to recieve it. This whole experience has been amazing and def a God thing. I got a healthy functioning kindey and two new sisters out of the deal! Lindsey and Heather have been wonderful to me. I am adjusting to the antirejection meds pretty well. The first day of the steriod was a doosy. I thought I was losing my mind, but high levels of steroids will do that to ya. I got a massize 500 mg dose in the operating room. Everyday they are slowly decreasing the amount of steriods in my body. I am also on anti viral, antibiotics and anti fungals because I am now more suseptible to germs while I am immune compromised. I have made many new friends with the nursing staff here. They have all taken such good care of me. I couldn't ask for better nurses. These nurses are def the creme of the crop! Dr. Alan Reed was my transplant surgeon who, guided by God, performed this miracle inside my body. Dr. Thomas has been dealing with the aHUS end of the issue and doing the soliris treatments and plasmapheresis. I do have another soliris treatment today, so lots to do before d/c. I am so thrilled to be this far in the recovery process. I can walk with minimal pain. I do have a 10 pound limit on what I can pick up and hold. So it will be a while before I can pick up my sweet Madeline, who by the way is coming to visit me Friday! I haven't seen my baby in 3 weeks!!!! I am ready to get back to Arkansas and start living this wonderfully healthy life. I promised Madeline I would get well before Kindergarten and I am so glad I was able to make good on that promise. Oh and food, my appetite isn't too crazy from the steriods. I like to eat anyway, but for the first time in 3 years, I can eat pretty much whatever I want and drink way more than 32oz of liquid a day!!!!!!

Life is def moving on up and I have Lindsey Rouse and her supportive friends and family to thank for it. Lindsey, I hope to honor you by the way I live my life. I want to be a witness to others and plan on paying it forward. You are an angel and a hero. And I know you were just doing what God wanted you to do, but it still takes an AMAZING person to listen and actually follow God's will. I love having you as a sister and will forver cherish our relationship! xoxo

Saturday, June 25, 2011

Kidneys are NOW included!

So much to blog about. But for now I will just say that this second birthday, second chance at life is so amazing! Urine never looked or smelled so beautiful before. I cannot thank Lindsey Rouse enough for her sacrifice and gift. She is truly heaven sent! All I can say right now is the KIDNEYS ARE INCLUDED!!!!!!! And working beautifully. My creatine is 1.6. The day of surgery it was 10-12!!!! My bruising is gong away and I haven't vomited once since recieving my new kidney. The pain is pretty intense at times but I'll get through it. It is all worth it! I can live a normal life now!!!! xoxo

Wednesday, June 22, 2011

The Eve of my Second Birthday

It's the eve of my second birthday and I am full of peace. I know tomorrow is the bgininng of a great new chapter in my life. I thank you with all of my being Lindsey Rouse! Here are a few picks from plasmapheresis yesterday. I will be updating the blog as I am able! Keep those prayers coming for both Lindsey and I!!! Talk to yall when I have a kidney!!! xoxo

Sunday, June 19, 2011

Not much to Update

This is the week! WooHoo! Excitement is lingering in the air. I am not really nervous. I have the ultimate faith in our God, who already has my life planned out. He is in total control. He has lined everything up for me for this to happen. It is crazy to go back in the past and think about how decisions I made years ago have played a huge role in this whole chapter of my life. But that is how God works. He has our story from start to finish all mapped out. I just have to stay on course. I also have some of the best transplant surgeons and nephrologists in the country working on me and Lindsey. So I am not afraid. I am a little nervous to wake up in pain and have to deal with recovery but that will be short lived and a very small price to pay for the freedom and life I am getting. I can't wait for Lindsey to get here. I am ready to spend a little time with her before the BIG day. I am also a little homesick. I miss my baby and fur babies but they are all in good hands! Thank God for good friends and family! Tomorrow is my last easy day. I just have to go to the hospital to get my catheter flushed. Then we are free until Tuesday when things get crazy busy again with treatments.
xoxo

Bruising

We aren't sure how I got these bruises but we think it is from riding in the car. I hope after I get my new kidney I don't bruise like a peach!!

I am going to show them to the hospital tomorrow!

Saturday, June 18, 2011

The Week Ahead

This coming week is perhaps the biggest week of my life...besides getting married and having a baby! All are life changing events. I am so excited to get it behind me and start the recovery process. So far this is what next week looks like:
Monday-catheter flush
Tuesday-Plasmapheresis
Wednesday-Pre-Operative Surgical Consult with Dr. Reed
Surgical Education
Chest Xray
Labs
EKG
Anesthesia Consult
Soliris Infusion
Thursday- At hospital bright and early to prep for TRANSPLANT!!!
Friday- Recovery begins

Friday, June 17, 2011

My Hickman Cathedar in Neck/Upper Chest Area

The bruising has gone down signifigantly. This little baby HURT for awhile but the pain is going away! It does save me from countless needle sticks!

Jill getting Soliris

This tiny bag of medicine is my kidney saving Soliris!!!

Jill and Plasmapheresis

June 16, 2011 Update

Yesterday was a rough and packed day. I had to be at the hospital at 10am to begin plasmapheresis. It was a 3 hour treatment. It went smooth until the last 20 minutes. They had to stop the machine bc I starting feeling sick. Then they kept me there for about an hour which made me late for my next treatment. Got to my next treatment in the infusion center and got my first dose of soliris. The treatment only took 35 minutes to administer but I had to wait an hour afterwards for possible side effects. I did not have any! YAY!!!! We were at the hospital for 10 hours! Got back to our hotel and starting puking. So then I started dialysis for 9 hours. So I had treatments back to back yesterday. My body was worn out! I did get to see Dr. Thomas who is one of my main doctors. He is a nephrologist who is coordinating my schedule. He is an awesome doctor!!!!

Wednesday, June 15, 2011

June 15,2011

Today at 7 am we were at the hospital waiting to get a cathedar placed in my neck/upper chest area. Surgery didn't start on time due to a staff meeting. Finally at 8:30 they took me back. My surgeon was only 27 years old! I thought doctors were suppose to be older than their patients??? Guess this is a sign that I am getting older! Anyway, the cathedar was placed in my internal jugular vein. I am very sore and it hurts on my right side. I feel like I've been hit by a truck....but it is only temporary pain. I had a ton of labs drawn today but they can use this cathedar to get them so no more sticks!!! Tomorrow I have plasmaphersis at 10am. That should last 2-3 hours and then at 1:30 I have my first soliris treatment. And then more labs...Will try to update how tomorrow goes. Thanks for all the prayers! Keep praying please!!! xoxo

Saturday, June 11, 2011

Butterflies

Just 12 days away now. I am starting to feel a little nervous. It comes and goes. I am more worried about my baby and my fur babies than anything else. I have only been away from Madeline when I was really sick and I was too sick to realize it or how long I had been gone. This is different. I have my wits about me and I know I am leaving them all behind. But everyone is going to be with safe people that I obviously trust with my most precious possessions! I just need to relax and enjoy this experience. I guess nervousness is normal. I feel confident about the surgery and everything medically. I just will miss my baby girl so much. But I keep telling myself I am doing this so I can be a better mom to her. We have so many things in the future to look forward to. All day today, I keep staring at her. I just want to soak up as much of her as possible. Hopefully I will make a super fast recovery and can get back home to her. I love that baby girl so much!

Wednesday, June 8, 2011

Update-Prayer Please

Just spoke to Iowa. Apparently after two doses of meningitis vaccine and I am still not immune! My titers showed that I am only immune to 1 out of 4 strands. So I am asking everyone to say a little prayer that this doesn't cause me problems. My transplant coordinator said we will proceed with transplant and everything else and they will be monitoring me very close.

Tuesday, June 7, 2011

Last PD clinic!

Today I got to say good bye to the doctor and nurses who have been keeping me alive and well for the past year and a half. Now that it is almost over it seems to have flown by....but it really didn't! Thank you to Dr. Deogaygay for your excellent care, Sharon for being the best PD nurse a dialysis patient could have, Sandy and Trinae for being there for me and Carol the dietician who kept me in check with my diet. Also thank you to Cindy who always helped me when I had an issue. I will miss seeing you but glad I don't have to come back. I'll just drop in and say hello when I am in town! Love to you all!!!!!

2011 Kidney Walk Success

Well, another kidney walk has come and gone and it was a great success. My team "Kidneys Not Included" raised close to $8500.00 and we won first place in the indivual fundraising category!!!! I have to brag and say our Arkansas team blew Tennessee out of the water! It was a great but HOT day. That 2 mile walk felt more like 200 miles in the 100 degree weather. But it was all for a good cause! Thank you to everyone who helped, donated, fundraised and walk! I appreciate you all!!!!Here are some pics













from the great day!

Wednesday, June 1, 2011

The Month is Finally Here

I cannot believe it! June has arrived and in 22 days I will have a healthy, functioning kidney! This has got to be the most exciting thing in my life....besides the birth of my child! I am so ready for June 23 to get here. I am like a kid waiting on Christmas. In less than two weeks, the process will begin. I have to do several rounds of plasmapheresis and Soliris treatments to get my body ready for the kidney. I pray those treatments go well. Plasmapheresis and I do not have a good history but maybe things will be different this time around. I will be so excited to see Lindsey in Iowa. To her, I am forever grateful! Please keep Lindsey's family and my family in your prayers over the next few weeks and months. I know I have lots of prayer warriors out there and I am really counting on you!

Saturday, May 28, 2011

To Bucket List or Not

I saw the movie Bucket List and it got me to thinking, maybe I should have been working on one of those. Now, I don't think I am about to kick the bucket but aren't we all at some point? I am so confused with all kinds of emotions right now. I leave for Iowa in 3 weeks so I am trying to make the most of my time here with Madeline. Oh, how I will miss her for a month! We are making a list of fun things we can do around here to keep me busy from worrying and her just to make some fun memories! Any suggestions are greatly appreciated. My facebook friends gave me a lot of great ideas.

I cannot tell you how ready I am to close this chapter in my life and start over. I have been sick my child’s entire life. I have never really been able to enjoy life with her or with my husband for that matter. I was sick before kidney failure....I just didn't know how bad it would turn out. Now I am full of excitement and a tad bit nervous and apprehensive. But I know I am in the countries best surgical hands and they are going to fix me back.

There are so many things I want to do after the transplant. For one, I want to take Madeline to the beach. She has been once but now she is older and would have more fun. Also, a trip to Disney World will definitely be in our future. Once I get back to working a regular and steady schedule we ARE GOING TO GET AN INGROUND SWIMMING POOL!!!! Those so far are the main things on my bucket list. I would also like to take a trip with Chris. We haven't been on a real vacation that didn’t involve hospitals, doctors or dialysis since our honeymoon! I intend on getting back to being an OT fulltime and continuing my advocacy for dialysis patients rights. I want to have a more active role in the National Kidney Foundation. Oh, and I am going to attend every concert that comes my way!

So, I guess I do have a bucket list. Not one that I can accomplish before transplant but some things to work one post transplant. And I want to live each day with as much joy as possible. I will hopefully inspire others who are in dreadful situations and be an example that things have a way of working themselves out. Lindsey is such an inspiration and I want to spend my second life honoring her kidney that she is donating to me!

Thursday, May 26, 2011

Last Delivery

This is the last time I will have to get 40-50 boxes of dialysis supplies shipped to my house! This time next month, I will have my kidney!!!!

Until the Fall....

Today is a bitter sweet day for me. It was my last day at work (for 3 months only). I will be returning in the fall with my new kidney! I love that place so much. Some of the sweetest people work there and are some of my best friends. I know I have to go on this hiatus to get the transplant and then give myself time to recover. So on one hand it is very exciting and it means my BIG day is drawing near. It's just hard to know I won't see my kids and coworkers for awhile. It will be nice though, to have energy and be able to be the best therapist possible. So, if any of my Sensational coworkers or families read this, know I will miss you and you better not forget about me! I will be a new woman in the fall!!!!! xoxo

Wednesday, May 25, 2011

Storms and Dialysis don't mix

The title says it all. I so look forward to the day that my life doesn't depend on a life supporting machine. When the storms flair up and things get hairy here, it is a little more than an inconvenience if the electricity goes out. My life depends on my dialysis machine and my machine requires electricity. It is such small details like that, that I won't have to stress about anymore. Nobody likes to be without power. But you really start sweating bullets when you are dialyzing and the lights flicker! The storms have been worrisome all day and hopefully I have a calm, uneventful night.

One the bright side, for anyone who lives in my neighborhood, I am on a priority list with CWL since I have a life supporting machine. So I am on the list to get my power back first, if it goes out....so there is a perk to kidney failure....LOL! It is a perk that I will gladly give up! Sorry neighbors. Come June, we will just have to exercise patience like everyone else. I will be normal again!!!!! xoxo

Monday, May 23, 2011

Count Down is On......

Wow! Today is May 23rd which is no big deal except for the fact this time next month I will be getting my new kidney! I am full of every emotion imaginable. Mostly excitement! I still cannot imagine what life is going to be like. Normalcy has been a thing of the past for so long. I cannot wait to feel good again. Knowing that I only have to live like this for 31 more days is so comforting. I am so grateful to Lindsey. I will never be able to say that enough!

Also, we are less than a week away from the National Kidney Walk in Memphis. I have raised over $7,000.00 but would like to raise a little more. So, if you haven't donated it's not too late! www.kidneywalk.org

Sunday, May 22, 2011

Forgiveness

I did something today I never thought I would be able to do. I sent a letter to the doctor (nephrologist) who I have written about many times. The one I considered "bad". I apologized to him. In church this morning, Brother Charlie had a sermon on saying things just because you can. Just because we have the right to say something, doesn't mean it is the right thing to do. I have carried this deep anger towards him for over a year now and it was eating me alive. I cannot go into surgery with that kind of anger. The things I blogged about early on were from my opinion and my view of the situation. But maybe I should have prayed about it and let it go. Instead I vented to the world my frustrations. I believe we all grow and change and hopefully get better. I needed to ask him for forgiveness because regardless of what happened, I shouldn't have written about it. I had to have that resolved before surgery. He is no longer someone I will refer to as my enemy. I hope he is well and living a peaceful life.

Sunday, May 15, 2011

39 days and counting

39 days feels like an eternity. The days seem longer than usual. I guess when you are waiting for something this big, time can seem like it is standing still. I am so ready for June 23! That day cannot get here soon enough. I am not nervous yet but I suspect I will be as the day draws near. Iowa has started working on my schedule of events. I have to get a permacath placed (I think in my subclavian, maybe jugular...not sure). This will be my access for plasmapheresis and Soliris treatments while in the hospital. Typically this cath is used for hemodialysis but I will still be doing peritoneal dialysis leading up to the transplant. SO many cathedars!!!! I am praying the pheresis treatments do not make me sick. Iowa is doing them on an outpatient basis but my history with pheresis is not a good one. Usually makes me very sick. Maybe since my HUS is not active the treatments will go uneventful. I will be very excited when Lindsey arrives. She will be getting there the day before the surgery.

The kidney walk is just around the corner. Only a couple more weeks left. I ordered the t shirts Friday, so I think everything is ready for that. I don’t think I will hit my $10,000.00 goal but I am a little over 7K so I am pretty pleased with my fundraising this year.

I also want to say thank you again to all of the families who are helping me out with Madeline and our crew of pets. Without your help, this would be so much harder and expensive! All the animals are going to different homes but I think everyone will be okay. July will be like a big reunion for us all. Thank you again to the families keeping Madeline. I know she will be in good hands and having fun. The main goal for her is to NOT worry about me. I just want her to enjoy her sleepovers and have a blast. And then I will return home, better than ever!!!

Tuesday, May 10, 2011

Quickie

I had a quickie, in and out, hospital visit yesterday. I went to the doctor last Friday and he said if I wasn’t better, come back Monday. Well, Monday, yesterday, I felt worse. Turns out I was severely dehydrated. The doctor’s office attempted to start and IV and give me fluids but all of my veins were too small. After two nurses attempted to start an IV and blew 2 of my 3 good veins that I have left, I was outta there. Only to be admitted to the hospital. I went into the hospital with a blood pressure of 50/32. I was at the hospital a total of 3 hours in which my Blood Pressure was never checked. My mom checked it when she got there and it was up to 91/50. I was able to convince the nurse to call my doc so I could go home. What's the point of being in the hospital if nobody is checking on you? They had called a pick line team to start a line on me but 3 hours passed and nobody showed up. So I got myself discharged. No point in giving a substandard hospital tons of money to do absolutely nothing. It would have made me feel better to get an IV and fluids, but I am not gonna sit around and wait forever. There is too much junk like staph and c-diff I could catch while there and that's the last thing I need this close to transplant. So, to sum up yesterdays visit, equals to a complete waste of time. Thank God I have a good PCP who didn’t just keep me in for the hell of it.

I am so sick of this entire situation. The last 30 months have sucked. There is no other way to put it. I cannot wait for the next 44 days to go by. I am sick of waiting on phone calls, clinging to what little info I can get (about myself), appointments, treatments, etc. This is really hard on a person. Maybe I am weaker than most people but this experience has taken its toll on me. I have dark circles under my eyes, pointed out to me by my mother. I am too young to have dark circles. I guess we outwardly reflect what are insides feel like. After I receive Lindsey's kidney, I pray I am brighter and refreshed. It’s like I am getting a second birthday. March 8th will always be my birthday, but June 23rd will be my rebirth date. When I feel like this, blue and down and out, I am just thankful to Lindsey. If it wasn’t for her, this nightmare would just keep going.

Thanks to her, I can go back to being a mama, wife and therapist and forget about dialysis, kidney failure and the many things i have to do daily just to stay alive. I wanna live instead of worrying about living. A concept that has been foreign to me for 2.5 years.

Friday, May 6, 2011

Going to the doctor

At this point, I practically live at my PCP's office. My blood pressure is holding around 60/40. So it has come up but not much. Every single muscle fiber hurts. I cannot describe the pain. Now I have never jumped off a bridge, but my body feels like I jumped off the I55 Memphis Bridge and hit concrete. It hurts to be wearing a bra! My left foot is numb, that is a new symptom. And I have vomited until there is absolutely nothing left. Almost feels like the beginning of AHUS but it could also be from that meningitis shot last Friday. Maybe I am just crazy! Anyway, my PCP will make everything better. He always does! Please pray it is NOT AHUS! xoxo

Thursday, May 5, 2011

Lousy Day

I feel yucky today. Can't do anything for myself. My blood pressure has been running 48/31...which is extremely low. Madeline has been sick vomiting and running a fever. The last two days have not been good. I am just holding on to the fact that transplant is right around the corner.

I got a letter today from BCBS telling me I am approved for the transplant. I didn't even know that I would be getting a letter from them. Sure glad it had good news in it.

That is all that is new right now. Plus I don’t feel good, so not much to write.

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