This is my new machine all hooked up and ready to dialyze me. All of this fluid adds up to 11,000 milliliters. That fluid flows through my body in my peritoneal cavity all night long (for 8 hours) to cleanse my body of toxins. Even though dialysis is no fun, it is quite amazing the job that is does!
Lots of things are going on with me right now. As I type this I am in bed sick with lots of vomiting and low blood pressure. Yesterday my BP was 61/50. It hasn't been that low in a long time. Today it is up to 90/69. Still low but better. The vomiting is worse today than yesterday. Good news is the dialysis clinic thinks they know why I am puking so much more here lately. Bad news is I have to increase my dialysis time to feel better. Which means I will be on the machine at night longer than my usual 8 hours. But I have been lucky to have only been on it for 8 hours a night. Many people I know dialyzes much longer than that.
More "down" news is I am not too thrilled about this new Frecenius machine. I had gotten really attached to the Baxter machine and hated changing. I knew changing machines would be an issue for my temperamental blood disease. I think this new machine is part of the reason I am puking so much more. It actually has a pump that pulls the fluid and my body feels like it is pulling too much. But I will adjust to it. It's just going to take time. I am already on my 2nd machine in 48 hours of being on a Frecenius cycler. The first one was so loud. Chris slept on the couch the first night it was so loud. But within 3 hours of calling the company, a new machine was at my door. That's customer service!!! Who knew you could get a dialysis machine delivered to your door in about the same amount of time as a pizza!
So enough with the down news. Good news is I have had labs drawn and sent to the Blood Center of Wisconsin to start tissue typing and testing for potential donor capability. I am praying I hear I have a match soon! So far, I have one person who has gone through the process to be a donor and she is an angel and a blessing. I have a gut feeling she will be a match. I know God is watching out for me and clearing a path to make this transplant happen.
I have also had many letters written to help me get the drug Soliris that I desperately need for this transplant to be a success. So I have done everything possible on my end to facilitate this transplant. It is now in the hands of others to make a decision. I feel a peace about the whole situation. And I will keep the blog posted as soon as I start hearing news. Please pray that my potential donor is a match and that I get Soliris approved. xoxo Jill
The time has finally come that I will be getting rid of my home peritoneal dialysis machine. No,no I am not getting a transplant YET! I am getting a newer home dialysis machine made by the Frecenius company, the people I do my dialysis through. SO tonight is my last night with my Baxter machine. Crazy as it sounds, I might miss it. I have gotten use to this machine for 18 months and I know all of its quirks. It has kept me alive for so long. I am nervous the new machine won't run as smoothly but hopefully everything will go off without a hitch. I trust my nurses and doctor so I think it will all be okay. Just thought I would post some pictures of the machine that has sustained me all of these months. I am also posting my laundry/supply room. The picture with all of the cardboard boxes are my dialysis supplies for just 1 month! I get a delivery every month with this number of boxes. What you can't tell by the picture is that some of the rows are 2 rows deep. I am one high maintenance chick! But those who know me, knows that's nothing new:)
Not exactly the change I am praying for but it's a change. At the end of this month I have to get a new dialysis machine (cycler). I've known for awhile that this change would be coming and I have been dreading it and putting it off. Currently I use a Baxter brand dialysis machine. I have had it now for 18 months...so it's a part of me! It dialyzes well, alarms very little and I am comfortable with it. But the new Fresenius clinic I go to (been there a year) is losing their contract with Baxter and Fresenius now makes their own machine...so I have to switch. The Fresenius team tells me the transition will go smooth but I know my body and how sensitive it is to change these days. I received a letter from Baxter telling me I have the right as a patient to stay with Baxter, that Fresenius cannot make me change machines. But over the two years of dialysis I have learned to pick my battles. And at the end of the day I would rather keep my doctor and team of nurses rather than switch to a different facility to keep my Baxter machine. I could never find a team of professionals like the one I have now with Fresenius, so it is worth it to me to just start using their machine. So, new machine I will meet you at the end of the month and pray we have as good of a relationship as my Baxter machine and I have. I trust my nurses and doctor and know they will help me get adjusted. And maybe...just maybe... I will only have this new machine for a brief period. Maybe that kidney will come soon!
Being on dialysis for me has been a roller coaster of emotions. Some days I am very angry, some days I am sad and some days I am forever grateful. Today is a grateful day. I am so grateful that there is such a thing as dialysis. Otherwise, I would be dead. And that thought is so alarming. I mean, we are all a heartbeat away from death. We could all be in a fatal car accident or suddenly get really sick or have a freak accident but we usually don't dwell on those thoughts. But for me, every night I "hook up" to my dialysis machine, I think, "wow, I HAVE to do this. If I suddenly stopped, I would die in a week or two." I doubt I would last much longer than that. That is such an "in your face" kinda thought that makes me, every single day, be aware of the fragility of life and how close to death I could be. So, I am grateful for that machine.
Feeling this way comes with so many thoughts. And they are only thoughts that I can stand to entertain for brief periods because some thoughts should not be entertained very long. For example, I hate when the "why me thought" enters my head. I have come a long way and don't think about that much but from time to time it creeps in. The one thought that I am most ashamed of is when I see others abusing their bodies and I wonder, why do they get to do bad things to themselves and their organs keep working? I didn't drink, do drugs or eat excessively unhealthy, and for whatever reason, my kidneys quit. I am in NO way wishing this on anybody else or saying someone deserves something over someone else. And I feel guilty for even questioning it in the first place. But with two years of thinking I have come to the realization that I have kidney failure because it was my fate. Nobody did this to me and I didn't do it to myself. Just my fate. And i am okay with that. I believe in God and I know He did not do this to me. He has a plan for me and my plan had this part of my life in it. I also believe He has a plan for a new kidney for me. I don't know when it will be possible but I truly feel that this is the year. I have a potential donor and she gives me strength to keep fighting because she is opening a door for me. Being an organ donor is a big deal. And the thought that someone not related to me is so willing to give me a body part out of the kindness of their heart is mind blowing, all inspiring and I am beyond grateful. It's not like I am asking to borrow a cup of sugar or anything. And the fact I didn't even ask her....she just offered. I can only thank God for having placed her in my path 10+ years ago. So, I just feel like I am getting close.
I think often of the day it will happen. I can't wait to make the drive to Iowa. I can't wait to say my last prayer as a dialysis patient, right before I go under. I can't wait to be prepped for surgery and have the surgeon or anesthesiologist tell me to start counting backwards from 10. And then to wake up afterwards and hear the news, It worked!!! It makes me cry now just dreaming of it. I can only imagine how wonderful it will be. It will be like being born again.....only being 30 years older and remembering it!
So, I felt like sharing these feelings on a good day. I feel like I have evolved as a person since the beginning of kidney failure. I am a lot less angry than when I even started the blog. In fact, I am not very angry about it very often at all. I have too much to be thankful for: my Madeline, my Chris, my family and friends, my life, my machine,my job, my house, I could go on and on. And someday my kidney!
Well, 2010 has come and gone and still no kidney. I have appealed our insurance company twice now, with the incredible help of my Iowa doctors, and both times they have denied me the drug I need for the transplant to be a success. It is very upsetting because two years ago when this whole nightmare began there were no options for transplant. Doctors simply did not know enough about my aHUS and how effective a transplant would be. But that has all changed now. Several people around the country, including a very dear friend of mine I have met during this journey, has received a kidney transplant using the drug Soliris and it has been a success. So until recently I had no options but now I do. I am about to embark on the mission of my life. If a kidney transplant is possible and has been successful in others, there is no reason I should not be given the same opportunity. I have done two years of dialysis....my anniversary will be in a couple of days. But I am tired of dialysis. Tired on being hooked up to a machine for 8 -9 hours a night. Tired of having to be in bed by 8 o'clock. Tired of the strick diet. Tired of weekly shots. Tired of pills. Tired of worrying about ordering my monthly supplies which take up an entire room of my house. Tired of vacations being a hassle because I have to drag a machine and a weeks worth of supplies with me. Tired of only being able to work 3 hours a week when my therapy kids, who need me more. Tired of puking everyday. Tired of blood pressure either so high I might have another stroke or so low I can't stand up. But most importantly I am tired of NOT being the type of mom and wife I am meant and can be. So while we are all making new years resolutions, I am making a promise to myself. I will leave no stone unturned when it comes to getting that very important life saving drug approved for me. Of course it is expensive, but can you imagine how much money it has cost to keep me alive over the past two years...not cheap. And it has been expensive not only financially, but physically, emotionally and spiritually. So, 2011 I am digging down deep inside me, ready to fight and determined to get a transplant. I have a fabulous transplant team waiting on me and I have potential donors. If doctors said it wasn't possible or if I couldn't find a donor, then I might would give up....but because it has to do with money, I can't let my life be put on hold or possibly die because of money. My life is more precious than that! And I have a little girl who needs me.
I hope I don't sound bitter or like I have a case of the "why me's". I know exactly why I have been given the opportunity to have kidney failure and even after I get a transplant I will continue my mission of being an advocate for patients rights. In many ways it has been a bitter sweet blessing, but I am ready to move on and start a new chapter. And I need to be healthy and well to do just that. I would not trade the last two years of my life for anything. I have learned a lot. But I must be honest, I am ready for it to be a memory and not my daily life. So , I will pour my heart and soul into making a transplant happen for me. Time to be my own patient advocate.