Caught on Camera

While I do not think I am qualified to give anyone advice, unless it is in the areas of pediatric fine motor skills development or dialysis/kidney issues, I do have one little piece of advice that I think many people can benefit from.

Before I got sick, I literally scrap booked nearly every single day of Mad's life for the first two and a half years. Everything is well documented! Once I became ill, this hobby quickly took a back seat and I hated that. Now anyone who knows me, knows I never leave home without my camera. Too many cute moments can happen in the most mundane places. And since she is and will be our one and only, I have been determined to catch every little developmental milestone. SO once I was sick I just couldn't keep up the scrapping.

Today, I sat down to organize my pics by years and then burn them to a CD as back up. Pictures are everything to me. While organizing my computer I came across countless little hidden treasures I had forgotten about. I have about 50 videos from the time Mad was 2-5 and they are the most precious gifts I have ever given myself, forgot about, and then rediscovered them with a whole new appreciation. They brought back so many memories I thought were lost in the sea of dialysis meds over the years. Taking those videos and having them to watch back are priceless to me. I can see one and remember that was one month before my kidneys shut down, or I felt really sick while filming this video, but now you would never know it.....you never see me on camera. Just my little angel! And watching her at age two sing Johnny Cash's Ring of Fire really stirs up the baby fever. But no worries.....not gonna risk all that I have been blessed with. No more pregnancies here.

It's so amazing to me to watch her grow and change though out the videos. When I look into those eyes of her at 2 and 3 years old, I am filled with the emotions the day the resident doctor came into my hospital room in STL and told me I had about a 20% chance to live. Before I kicked him out of my room and instructed him to never step foot in my room again, I told him I would be getting better because I had a 2 year old at home who wasn't going to be raised by anyone but me. Later down the road a nephrologist told me a kidney transplant would never be successful with someone with my blood disorder. I am one of six successful transplants I know of to date.....all successes with the same blood disorder!!!! I fired that doctor too!

So my little piece of advice, if you don’t already have a camera or some device to take videos, get one and start. Without the hidden treasures I found today, I would have never remembered half of these videos. And during most of them I was sick so I wasn’t enjoying them at the time. But seeing them today I thanked God for giving me the strength to video that precious child of mine so I could sit back in my new healthy body and laugh, cry and enjoy the little things I missed out on. So whether you are sick or healthy, mommy or daddy, have one or five kids......we are all busy and have daily interruptions that take us away from the ones that matter the most. Just a few short 30 second to one minute video every now and then....and in 5 years you will be amazed at how much your child has grown and changed and will be so pleased with yourself for capturing that moment in time. Today was a real treat for me. I finally got to see glimpses of Mad over the past three years without the cloud of dialysis hovering above me. And I got to see my baby, really see her! And you know, despite all the health issues I was facing, she looks like a happy, typical and well adjusted kid in those videos.....which will help me sleep easier at night!

My New Residence

Someone asked me today if I was still on cloud nine? And I said, Cloud Nine is my New Permanent Residence. I don't ever plan on leaving this new place in life...that is until I go to Heaven! But life is truly extraordinary the second time around. I guess I didn't know how to enjoy or appreciate life before. My cloud nine residence takes a lot of work to maintain though. Although I won't go into the specifics, being a transplant patient with a very rare blood disease and one of 3-4 adults who have ever successfully have a transplant with this disease, means I'm am diving into uncharted waters. I am boldly going where few have gone before. My aHUS friends have been fortunate enough to have had their transplant in their hometown or very close by. The 8 hour distance between my transplant team and me throws extra excitement and difficulty into the mix. I know I am helping pave the way for future aHUS patients. So as long as I know I am doing it to help others and save my kidney, I will do whatever it takes to keep this kidney up and running. Logistically there is so much involved. And there are a lot of people involved. My entire Iowa transplant team led by Dr. Thomas, Erin my post transplant coordinator, Dr. Step in Memphis, PCP here in town, Home Health nurses, Pharmacists, Soliris people, Medco, insurance people from many different areas and this is just the tip of the iceberg. But I knew this was going to be a job. But it is definitely a job worth doing and doing it perfectly!!!

My Flakey Potassium and Phosphorus Levels

I am very interested in hearing how my fellow transplant recipient friends have dealt with this issue!

A little back story first. So if you remember during my kidney failure/dialysis days, phosphorus and potassium were two of the mineral things I could not eat. High phosphorus levels can cause a buildup in your joints, appendages and other body parts (men, your most sacred part) and cause them to basically rot and fall off! No joke! My aunt, the dialysis nurse, has had two men actually lose their most treasured part! Of course, phosphorus can be just as damaging to women. But people really seem to take the message more seriously when I share the stories of men. So, I was very diligent and faithful to my renal diet! I ate as little phosphorus as possible, which was difficult because phosphorus is in EVERYTHING!!! So, I also took 12-15 phosphorus binders daily to help reduce my phosphorus levels. I was pretty much an all star when it came to my dialysis labs! Then there is potassium. Too high or too low levels of potassium can cause detrimental effects. One of which is a heart attack. I always kept my potassium in check by avoiding high potassium foods such as bananas, orange juice and potato products. Don't get me wrong, the renal diet was tough, but not following it would have had greater consequences.

And just for anyone who reads this and starts worrying about their potassium or phosphorus levels, if you have healthy functioning kidneys, do not fret. Your beautiful kidneys are regulating these levels for you. So men readers don't worry!

Now that I am post transplant, I can eat anything! I knew initially, my potassium and phosphorus levels would be low because I went into transplant with low-normal numbers and once the new kidney kicked in, it would lower both levels. I felt like with my new freedom and relaxed diet, I would increase these numbers to normal ranges naturally with my new diet. In 5 weeks I have yet to get my levels up to a normal range. They are abnormally low. So, Dr. Step in Memphis has now prescribed me potassium and phosphorus supplements. I just think this is funny and amazing how good my new kidney is working. I struggled for nearly three years to keep these two minerals in a low-normal range. And now my body works so efficiently, I have to take supplements to bring them up from too low to a normal range.

Every day I am amazed by the power of this new kidney. Which all healthy functioning kidneys do this and we never think about it. But now that I have had a history with kidney failure and now a future with a functioning kidney, it is mind boggling to sit back and marvel at its work and wonder. If I didn't believe in God and all of His power and glory, I would think this new kidney was magical!!!!! But then again, God is magical! I am aware that I received a super awesome, healthy kidney from a perfect specimen of a human being....so that probably has something to do with how wonderful my new kidney is!

So in a few days of being on two more pills, my levels will be normal again! No worries here!

Michael's New Kidney

A friend from high school received a kidney transplant from a living donor, his friend Andy, on July 19th. It was a successful transplant and just another example of God's glory and good work. He has the sweetest family and new baby boy who was born on my transplant birthday, June 23! Please continue to keep Michael and his family and his gracious donor, Andy and his family, as they both continue to recovery. Both guys are at home and recovering well. Congrats Michael!!!! You are an inspiration for many!!!!!

My Sweet Friend

I would like everyone to take a second and read about my friend Arielle. She is a very sweet girl I probably would have never met, if I had not gone into renal failure. We are from different towns and she is younger than me. She is only 28 years old. She has been on dialysis for almost 3 years. It will be 3 years in November. So, she went into End Stage Renal Disease at age 25!!! I recently got to see her and she asked me how I felt. I told her that I feel better than I ever have, in my entire life. She said "wow, I wonder what it would feel like to not be sick." Arielle's battle with kidney disease has a longer and harder history. The reason I would like you to read about her is because she has been doing dialysis for TOO LONG!!! And just like the blessing and healing I received in June, I know that God has a plan for her healing. Arielle is 0+. I just wanted you to meet her because I am going to do anything I can possibly do to help her get a kidney. She deserves to know what it feels like to "feel good."

Saturday July 23, 2011- One Month Out!!!!

Today was officially the day, the one month anniversary and one month past my second birthday. This has been one of the most amazing months in my life. The best month in three years! God had a plan and it unfolded just as it was suppose to. It's so interesting to me the way mine and Lindsey relationship has grown and changed. I believe it was the year 1999 or 2000 when my friend, Brandy Pratt Tinsley told me she was leaving the quaint flower shop Petal Pushers and that I should go in there and apply for her job. Little did I know I would meet a girl that many years later would change and save my life! Thank you Brandy, for helping me get that job!!!! So, obviously I got the job and got to know Lindsey Anderson.....later to be Lindsey Rouse. We drove around in the delivery van delivering flowers and making floral designs. Okay, I wasn't very good at the design part but Lindsey was. We had many fun times working together. She attempted to teach me to drive a stick shift one day....and that proved to be a mistake! But we had lots of laughs and good times together. I worked there for about a year and then I left for college. Lindsey went to college in another town and got married. I didn't see or talk to her for many years. That's what happens sometimes, we lose contact with friends. But thank God for facebook. Through facebook, Lindsey and I reconnected and began chatting from time to time. Then one day, kidney failure entered the picture. Lindsey was following my story via facebook and my blog. She saw the ups and downs and dialysis and my struggle to get a transplant. One day, after it became aware to everyone that my sweet brother, Matt could not be my donor, I received a message from Lindsey. She was willing to get tested. And, well you know how that turned out! I am so blessed and thankful to God for the way he worked through so many people all those years ago. I would have never imagined kidney failure would be part of my story but I always new deep down it would eventually be part of my history. And thanks to Lindsey Rouse it is history. From June 23 to July 23 I have enjoyed life and been more aware of life in a way I never have before in my 31 years. It truly is like a new birthday and a great new beginning. And now someone who was a friend is now a sister. The blessings have been astounding. I am forever grateful to Lindsey and I know that God is going to bless her life in so many ways. I love her so much!!! Thank you Lindsey!

Med Box Stress

I have dealt with numerous pills for nearly three years now. So you would think it would be a very non stressful event. But there is a BIG difference in my dialysis meds and my transplant meds. For one, I take twice as many now. Which that’s not the problem. They all look similar and change in doses frequently. As a disclaimer, I would like to add I am not complaining, in fact, it is a blessing to be at the stage that I am taking anti rejection meds. I think because my life truly depends on these meds now it totally stresses me out every week when I sit down to fill up the pill box. I currently take 17 pills in the morning and 9 pills at night. They are all really important and I am so afraid I will screw one of them up, and very quickly that could lead to very serious and dangerous consequences. I don't work as well under pressure. Chris, fortunately, has every medication memorized by both names, mg, and frequency during the day. Problem is, he likes to "supervise" me as I fill up the pill box and makes me more nervous. In all honesty, I wish he would just do it for me. Not because I am lazy, but I trust him more than I myself. He says he doesn't because he loves me and wants me to know what’s going in my body. And with time, I'll have them all memorized. It's just overwhelming right now. Next week, I go to the pharmacy here at home for my first refill since Iowa. And I am pretty sure that Iowa gave me the Non-generic drugs and I will be getting the generic drugs now. Which will look different and have different names. But hey, if this is the biggest problem I have, life must be good! I really can't complain. Lots of people have asked me about my medication regimen so after filling the pill box up tonight for the upcoming week; I thought I would share my current experiences with my meds. Luckily, I don't seem to be having any negative side effects from any of the drugs. Only one of my anti rejection meds makes me itch really bad if I go outside and get hot...but I am an indoor, AC kinda girl anyway....so that's not really an issue. This time next month I will probably have them all memorized. I actually prefer to NOT use the pill box and just open each pill bottle I need daily as needed. But with the number of meds I am on right now, it's probably wise to use the pill box. I keep telling myself, Jill, you have a Masters Degree; you can do this and not mess it up. I think just because my life depends on it adds a totally new layer of stress to the situation! Pray for me and my pills!!! xoxo

Updates From the Past Week

It has been a very busy time in my life here lately. Of course, I am doing lots of things I haven't gotten to do in years!!!! Taking Madeline to eat ice cream, teaching her to hoola hoop and just normal mommy and wife activities. These simple things are so precious and priceless now.

I met with my new "local" nephrologist in Memphis on Wednesday, Dr.Stepniakowski. I will refer to him as Dr. Step from here on out. I loved this man. He was very knowledgeable in kidney transplant patients and was very honest about his limitations with my aHUS. I totally can respect a doctor for their honestly and full disclosure. Iowa, Dr. Thomas, is still calling the shots, monitoring my aHUS levels and will be my main nephrologists, but we needed someone local who could physically lay eyes on me in case something unforeseen comes up. I think the working relationship with Dr. Thomas and Dr. Step will definitely be a positive experience.

I have been receiving Home Health for two weeks now and I love my nurses. We .are using Home Health Professionals and they are top notch! I highly recommend them if you are in the Blytheville or Jonesboro areas. My nurses, Bridgette and Beth are awesome. They are taking such good care of me. Beth administered my first home Soliris infusion this week and everything with the administering of the drug went smooth. No side effects or reactions were noted.

Getting my Soliris to me, well that is a different story. A very long and complicated story. Let's just say it's a good thing I advocate for myself and am on top of things. I won't go into the stressful day I had with the Specialty pharmacy, trying to get the Soliris to me. I pray since it was the first delivery, all of the kinks are worked out and I pray next time things go more smoothly. I am cautiously optimistic and I know God has His hands in all aspects of my life and he will see that I get my drug. So, everything is going to be okay. I am blessed to have this drug. It keeps this kidney happy and healthy!

I had an awesome and quite rare opportunity this week as well. My friend, Michael, who I graduated from high school with, got a kidney transplant Tuesday!! I got to go visit him Wednesday in the Methodist Hospital in Memphis. Of course, I had to donn a mask and gloves for precautionary reasons....all the germs in the hospital. But it was such a good visit with him and his sweet family. He is doing great and making lots of urine!!!! He is very tough and actually got to go home today. That, my friends, is how a "typical" kidney transplant goes. In on Tuesday and home by Friday. I'm cool with being atypical. As Lady Gaga says, baby I was born this way!!!!

My labs have dropped from three times a week to only two times a week. So that is awesome news. My creatinine is at 0.9. When I was admitted to the hospital on the day of transplant, it was 15!!!! So all of the lab work is looking beautiful.

Also, while in Memphis Wednesday, I was able to turn in my dialysis machine to the dialysis clinic! I loved getting rid of that. Also on Thursday, the dialysis supply company came to my house and removed all of the left over home dialysis supplies. I loved watching the delivery man load up all of those boxes and take them away....approx 25-30 10 pound boxes! I even have a new, empty room in my house that I get to redesign!!!! Life is so exciting!

So, I am living life, enjoying it and seeing some things for the first time. The best part is I have been cleaning my house like crazy this week.....something I left up to Chris and my mom for nearly 3 years. And it feels really good to be doing normal household chores....never thought those words would come out of my mouth! I also am doing so much more with Madeline and she is soaking every bit of the attention up. It is so exciting to see how happy she is. We all are so happy and so blessed.

Welcome to a New Life

It's OVER!!!!! Nearly 3 years of kidney failure and dialysis and plasmapheresis all came to an abrupt end on June 23, 2011. Thanks to God's grace and work I was blessed with a healthy new kidney. That beautiful organ came from my friend and now sister, Lindsey. She is my hero, my angel here on earth. I have another blog www.kidneysnotincluded.blogspot.com and you can go there and read my story of kidney failure and the process of getting a kidney transplant. I felt like it was time to move on from the "not included" blog and celebrate the new life and gift I have been given in a new blog, appropriately titled "now included". I am so happy to share my story of healing, faith and recovery with all of you. I hope you enjoy reading this blog and celebrating life with me! xoxo