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

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.