Life Changes

The last two weeks have been a roller coaster of changes with our family. First, my baby started Kindergarten. She loves it but I really miss the Pre K days when it wasn't real school yet. It's sad not being able to walk her in the building in the morning. Everything is so official now. But she has a great teacher, is learning a lot and making friends, so I really can't complain. I also stepped back into my role as an Occupational Therapist (part time of course). I love it though and am amazed at how much energy I have during the day with my patients and especially the amount of energy I have after work. It is great to see my kiddos, their sweet parents and my coworkers. I have a fabulous work environment!

On a sad note, I lost my sweet Gracie Mae on August 25. She passed away at 5am that morning. She had been to the Vet earlier in the week and been diagnosed with pneumonia. We were on several meds to help make her better and her prognosis was good. The veterinarian taking care of her said she probably had an aneurysm because of all of the pressure caused by the fluid in her lungs. He said this wasn't a very common occurrence. Which, after thinking about it, she is MY dog and she and I were a pair....rare you might say. I take comfort in the fact that I was there with her, holding her and singing her Gracie song I made up 10 years ago when she was a puppy. She had been through a lot with me. College, OT school, car accident, marriage (she wasn't wild about him because he kicked her out of the bed), baby, more dogs and a cat, and my kidney failure. She was by my side when I was first sick and fighting to stay alive. I remember Chris putting her in bed with me when I was near death. She was always right under my bed once I started dialysis at home. She really wasn't supposed to be there but she was a part of me and would growl if anyone tried to remove her from the room. She protected me. And in the end, I tried to do the same for her. 10 years of my life with her and very sweet memories. That's 1/3 of my life! She is truly one of the dearest, sweetest and most loyal friends I have ever had. And I will miss her greatly. We laid her to rest beside her best dog friend, Gabbie Lou and planted a dogwood tree in her spot. So, she will continue to be in our backyard, keeping a watch on everything. Until I see you again someday, Good bye Gracie Mae, I love you!

Lots going on.....

I haven't been faithful in updating my blog lately. I guess it's because I am too busy doing normal mommy/wife things. I clean our house, play with Madeline and actually cook dinner at night for my two! I can run errands without getting exhausted and even went on a shopping trip with my mom last week. She said about half way through shopping, "the old Jill is for sure back" I asked her what she meant? She said, "You've been dragging me in every store just like you use to when you were in high school and college!" And SHE was the one who was tired! I was just getting warmed up. It feels really good to be able to participate in my most favorite hobby, shopping.

But to shop you need $$$. Well, I get to go back to work next week!!!! I am only working Tuesday and Wednesday but it feels so awesome to get back into one of the main roles that define who I am. I get to be the one helping others, the one wearing the scrubs!

Last week, my mom treated Madeline and I to a Girls Beach Trip! It was fun. Madeline loves the beach and had been once right before I got sick. She has begged to go the last few years. SO mom and I packed up and took that baby to the beach! She had a great time. We all did. But if you ask Mad her favorite part, she will tell you, the swimming pool! Kids!!!!!!

I am looking for to Friday. I get to go to Lindsey's church and film our story and testimony to be shared with others. I hope it touches someone and gives them the strength and faith to keep fighting and hang in there. Whatever battles they are facing, God will come through for them. You just gotta believe.

And, my baby girl starts Kindergarten!!! Where did the time go? I had promised her all along, mommy would have a kidney before starting kindergarten. So I can be a more involved mom at school this year.

Everything is so normal and I love it! Couldn’t be happier!!!!!

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."