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

Tuesday, March 30, 2010

Real Care

I have started with my new PD clinic and things are going great. I feel really safe with this group of medical professionals. Last week, something was wrong with my catheter so we went to have it check out. The PD nurse was so full of ideas and was able to correct the problem. The PD nurses there, are always on call. So no matter what time of day or night, I can reach one of them! That is one thing I never understood about my previous doctors and nurses. To them, it was like after 6 pm and on the weekends you are on your own. I don't think they ever understood that my kidneys do not magically start working when it is closing time for them. I realize everyone needs time off.....that is when you get a backup nurse/doctor to help! It's also nice to have a doctor that explains thing and doesn't give the answer, "well, it's too complicated to try to explain!" Seriously, Med School taught you that???

Anyway we are off to a good start with the new clinic. I will be taking a test in the next few weeks....that should have been done in June of last year before I started PD. This is a very patient specific test and I will keep you posted on that. Even when I am away from this towns careless clinic, they keep me surprised with the way they half did their job.

Sunday, March 21, 2010

A New Chapter Begins

I am very excited to be starting over with a new clinic. I believe that this clinic will be more of what I have been wanting. There is a team of nephrologists in the clinic. I have one main doctor but it is comforting knowing there are 4 more doctors with many years of experience. My new doctor is very approachable, explains thing well and is accessible to the patients. I have 3 PD nurses now. One of them is on call at all times. So, I should be able to get someone on the phone if I have any problems. They have many years of experience in PD. I had my first visit with the social worker. She was very nice, explained everything to me and gave me information about different resources I never knew about. The new clinic also has lots of rules (which I like) and actual goals that we will strive to achieve with my dialysis. This is going to be a good change for me. I have only met with them a couple of times and have already learned a lot of things about PD and ways to take better care of myself.

Saturday, March 13, 2010

Similar stories

I spoke early on in the blog about a girl I met who has the same exact disease (HUS) as me. We got sick one week apart. Her dad created a very informative blog during the early stages of her illness. So out of the 300 known cases of HUS, now you know 2! She is the bravest girl I know and has really helped me through my difficult periods. You can gain more insight to HUS by reading her blog. You can find the link on the bottom right side of my page!
Love you Lys!!!

March is Kidney Awareness Month

March is National Kidney Awareness Month and March 11th was World Kidney day!!! You can go to the National Kidney Foundation at www.kidney.org to learn tons of information about kidney disease and also find out if you might be at risk for kidney problems.

Love Your Kidneys!!!

My PD machine, my drain bag, my tube and me


My tubing






















Friday, March 12, 2010

Lemontini

When life dumps lemons on you, make a lemontini!!! I am living a normal, healthy life....without kidneys! I take care of my daughter, myself, my husband, my dogs, go to church, go to work, volunteer, exercise, go shopping, travel, all of the things normal people with kidneys do. I am determined to live a long, productive life.

I do not know what the future holds as far as a transplant is concerned. I know the countries best and brightest are working on that. But I do know that with or without kidneys, I am going to see Madeline graduate high school, college, get married and see grand babies someday. I am 1 in a million already so why not?

My journey is definitely not over. I will be starting a new chapter in April at a new PD clinic an hour away. Soon I will be traveling to Iowa for some more genetic testing to learn more about HUS.

I hope my blog inspires someone to take charge of their life and/or stand up for themselves and get the kind of health care they deserve. Because at the end of the day, it is your life and your body. So, have a lemontini....and 1 for me, since I can't have one!

God Bless

To Chris

You are the greatest person I know. You have definitely had to live up to the for better or worse and in sickness and in health part. You have had to do things and see things that no husband should ever have to see or do. But you have never complained. You have never made me feel like the dead weight I have felt like. You have always made me feel like a good wife and mother, even when I sat in the chair for 3 months crying. I would have never made it to this point without you. You saved my life twice by getting me to Barnes, you have driven me all over the country for answers, you set up my machine every night, you empty my 10 pound drain bag every morning, you eat a renal diet with a smile on your face, you still told me I was pretty when my hair was falling out, I had gained 50+ pounds, had tubes all over my body, had puke in my hair and wore pajamas for months. When some spouses would have jetted, you held my hand and walked through the fire with me. I am forever grateful for you, your love and your support. You are the best husband a girl could ask for. Love you! JZ

The End Is Upon Us......

I am a model patient as far as being compliant is concerned. My doctor even called me "the poster child for PD!" My labs are great, I am probably the healthiest I have ever been in my life (except for the whole kidney failure and blood disorder thing), I strictly follow the renal diet, I JOG everyday, I take my meds everyday, I use sterile procedure EVERY night with PD, I monitor my blood pressure through out the day. I am in great health because of ME. My doctor does nothing to support me. I am doing all the work. And to a degree, I understand I should be doing all the work. But I need a team. I need an accessible doctor and nurse. I need a doctor to not call me "the HUS expert!"The doctor is the one getting paid hundreds of thousands of dollars to be the expert. I do realize when you get sick with something odd and rare, you do learn everything about it yourself, but on the other hand, you want your doctor to know more about it than you. Research it, talk about it with colleagues, communicate with the Mayo clinic and Barnes where the experts are, or if nothing else google it!!!!!!!!!! I just need more.


If by chance my ex-doctor comes across this, I want you to know I forgive you for all of the wrongs. I do believe you have the ability to be a better doctor. I think you need to take a good look at who you have working for you. Some of your nurses work harder than anybody I have ever seen before, but others are just riding the clock. You have one nurse in particular who is great. She is caring, compassionate and patient, but extremely overworked. This nurse would never complain but if she had more help, that would be a step in the right direction. You just can't be your best when you are wearing too many hats!

I don't know what your reason for going into dialysis is or was but this is peoples lives. Those patients are trusting in you to do the best job and I don't believe you are doing that. I don't think I ever trusted you and trust is really an important thing to have when you have someones life in your hands. And hope, you need to give your patients hope. You took mine away very early on but I've got it back. So as we part ways, I hope you get what I am saying. I have always wanted to say this to you but never had the nerve. We both know I am a squeaky wheel but at the end of the day I have a 4 year old and I am going to raise her. So, if you could just be the kind of doctor I wanted you to be, then you will be a better doctor. Just earn your patients trust and don't rip away their hope.

So this is it. I went to my last PD clinic with this doctor. I will be starting a new chapter in April. There are two main reasons I wrote this blog. 1.) Hopefully to help someone else 2.) Get my story from December 2008- March of 2010 out of my head, all in one place and in the past. It is a lot. I will continue to update as my new journey with a new clinic and new doctor and new nurses begin. I am optimistic things will be better. It has to be. There is no place to go but up when you are already at the worst place.

Network 13

Network 13 is a powerful force. They serve Arkansas, Oklahoma and Louisiana as a patients rights group to make sure patients are treated fairly in the dialysis setting. If you have a problem that is unresolved you can call them and file a complaint. The very words "Network 13" changes a bad attitude at dialysis. I was going to call one time when the doctor walked out on me. But instead I accepted the apologies and tried to put it behind me. After all, I was mad at the doctor that day and Network 13 would have come down hard on the clinic. And this would have affected the nurses more than the doctor. And some of the nurses I really liked, so I didn't want to cause them problems.

So I never called the Network. I really did try to resolve things by following the chain of command. But, you can only follow the system and be let down by the system so many times. I did try to talk to the director of the unit but she never did anything. The only thing she ever did was call the doctor to keep me from calling Network 13. It was an endless cycle.

But more than my own complaints, it was the complaints of my fellow dialysis patients that outraged me. The fact that they were being treated worse than me really bothered me. The fact that they thought they were getting good care and in all actuality probably are not bothers me. You have heard the squeaky wheel gets all the attention. I am that wheel. And I want all patients to be that wheel. If you think you aren't getting the proper care, chances are you are not.

So I want everyone who has to be on dialysis in this area to be educated about Network 13. I have other reasons for sharing my story, but the main one is to hopefully help others.

Network 13
www.network13.org

Patients Toll Free # 1-800-472-8664

Go to this website and learn more about your dialysis clinic wherever you are. This is where I learned a lot of information. Most of which, scared me to death about the clinic I was attending.

Why do you stay?

Why haven't I just found a new nephrologist? That is not as easy as it sounds. There are only a couple in my town. When I was sick in the beginning I met one of them. He is the one who told me I had kidney failure but didn't know why. He said this from the doorway. I don't think he ever stepped one foot in my hospital room. Also I have heard worse stories about him. Worse than my story....so he was not an option.

That left me with the other one. When I first got home from Barnes in January, I was so sick I didn't realize the type of care I was getting. It really wasn't until April or May of 2009 that I started watching and listening very closely to everything going on around me in the dialysis unit.
I also took part of the blame. I felt like I was the one who had the 1 in a million kidney problem so it was not the doctors fault for knowing anything about it. It wasn't until I realized not only did he not know anything about it, he didn't care to know anything about it. That is what bothered me.

It also began to bother me that I saw and heard of other patients being treated poorly. I have always taken up for myself and when I couldn't my family did. But some of my fellow dialysis patients had nobody and they didn't know any different. They didn't have an insider dialysis nurse in the family like I did. There was so much wrong, it bothered me for their sake.

So once on PD, I thought things were going to get better. And it did for awhile. After threatening to call Network 13 on them, they all but rolled out the red carpet for me for my monthly PD visit. I started noticing they treated me different (better) in so many ways from the other patients. This did not settle well with me. I knew they were only making me happy to keep me quiet. It was a fake nice. I would rather you spit in my face than pretend to be my best friend. I began to ask myself this question, "If Jesus was on dialysis and everything was going okay for him, would he be okay with knowing that others were being treated less than?" The answer is NO. I firmly believe Jesus would have wanted his fellow dialysis friends and strangers to have the best treatment available.

Advocacy runs through my veins.

So I would stay a few months longer but I was actively looking for a different doctor.

Dropping the ball again!

At this point I have been on an anti seizure med for ~9 months. It causes really bad memory loss. All of my doctors agreed that the seizures were all caused by my uncontrolled BP. So one day at PD clinic, I ask my nephrologist if I could begin tapering off this drug. He says it will be fine with him but I needed to go have an EEG conducted just to make sure everything looked right. So I did.

He sent me to a neurologist here in town. He was a good doctor and I have no complaints about him personally. His staff on the other hand were a different story. I have had several EEG during my illness and they have always been conducted at Barnes in a very professional, quiet setting. Not here at home! I was told to sit in a lazy boy type recliner. It took the EEG tech 45 minutes to place the electrode pads on my head. That was a really long time. The procedure itself takes about 45 minutes. Anyway, the test begins and two ladies are in the room with me chatting up a storm. Just yapping through my whole test. At one point someone knocked on the door, and they all three proceeded to move a different chair out of the room and into the hall. Talk about distracting. This did not seem to be protocol to me.

But the story gets worse. We finish the test and I go to the front desk to check out. The receptionist said I owed 7o something dollars for my copay. Our insurance does not have a copay and I tried to explain this to her. She said, "everybody has a copay" in this very condescending voice. She then told me I could not leave until I spoke with someone in the insurance department. She led me down a hall into a room of several women. The one I needed to talk to was busy with someone else, so another lady attempted to "help" me. She told me I couldn't leave with out paying. I have been to so many doctors by this point, I think I have an understanding of how my insurance works. I told her I have a private insurer who is primary and Medicare who is secondary. A third lady spoke up and said, don't you mean Medicaid, you are too young to have Medicare! I about blew a fuse. I said, No, I have End Stage Renal Disease and yes I have Medicare." I was so pissed that they were treating me like an idiot. I jerked my insurance cards out of the ladies hand and left. I was not mad that they thought I had Medicaid, I was mad because they treated me like I didn't know what the hell I was talking about and trying to make me feel stupid. And I bet they treat a lot of other people that way too!

I went home and wrote the doctor a letter explaining how my experience with his staff had been. He then (in my opinion) decided to make it very difficult for me to get the results of my EEG. To make things worse, my nephrologist made little attempt to get the results either. So 2 months after the EEG, I found out my test results were normal and am now happy to report, I am off seizure medication.

With some of these doctors it's like pulling teeth to get anything accomplished.

So WHAT do you eat?

The renal diet is tough. No potassium, no phosphorus, no sodium, no wheat and no dairy. It really doesn't leave much room for anything good. Here is what I can eat: 32 oz of water, rice milk, cranberry juice or lemonade, turkey, fish, tofu, organic chicken, organic eggs, apples, grapes, lemons, pineapple, blueberries, peaches, strawberries, broccoli, carrots, cauliflower, celery, corn, green beans, lettuce, onions, squash, 1 type of cereal, unsalted crackers, white bread, white rice, noodles, rice cakes, and marshmallows. That is basically it. My potassium is 4.3 with the normal range of 3.0-5.5 so, I am doing good there. My albumin (protein) is 4.6! That is awesome. They want it to be 3.7 or higher. My parathyroid at one point had become overactive. The normal range is 100-300. I am now proud to say I am 200! And I attribute all of these perfect numbers to the renal diet. I do not deviate, I am strict and my health is reflecting it. I would strongly encourage anyone with renal issues to follow the renal diet.

And for the record, all of my friends and family feel guilty when we go out to eat. Don't! You have a healthy functioning body so don't feel bad about eating anything in front of me. It does not bother me at all!

Here are two renal friendly cookbooks shared with me by one of my darling cousins. Thanks Chef!

1. Cooking for David: A Culinary Dialysis Cookbook
2. Creative Cooking for Renal Diets

Happy Eating!

Rx

In the beginning Jan-June 2009, I was on a lot of meds. I took ~15 pills a day. That is not including my phosphorus binders. I have to take 5 with each meal and 2 if I have a snack. So that is an additional 15 pills. Overall, I was taking about 30 pills a day.

Now, things are much better. I take 7 pills a day and still the 5 phosphorus binders with each meal. I seldom snack so that is not an issue. Phosphorus is in everything. There is no way to possibly eliminate phosphorus from your diet. So these pills I take with my meals, bind to the phosphorus and helps remove it from my body. Phosphorus is a BAD and dangerous thing for dialysis patients. If your phosphorus gets too high, it can build up in any area of the body. If it stays high for a prolonged time frame, that body part can fall off.....any body part! I have read stories of men who lost their penis to high phosphorus levels! Not kidding guys! People have lost their fingers, toes, any part. So when I feel tempted with a piece of chocolate or piece of cheese, I simply look at my hands and ask myself, which do I want more?

Here is a story of incompetence from my home dialysis unit. Back when I was really sick my phosphorus was ~9.0. The goal is to stay between 3.0-6.0. I was 9! I called the dialysis unit and told one of the nurses my number. She just laughed and said, "that's nothing, we have patients in here with phosphorus of 10, 12, even 14!" I was shocked. How could she not take this serious. I immediately called my aunt to figure out what I needed to do to get my phosphorus under control. This was a turning point for me and the renal diet.

My Sweet Madeline

She is a tough cookie! I am glad this all happened while she was young so hopefully she doesn't have any bad memories of it. T0 her she just thinks she got to spend more time with family members. My goal has been to never let her be scared. She knows mommy was and still sometimes is sick but she also knows mommy gets better. I am cautiously honest with her. I never want to lie to her but I also don't want to tell her something that will scare her. So I walk a very fine line with Madeline.

Back in my hemo days, she would come to the clinic and was never scared of that place. I was more afraid than her! Now that I am on PD she knows she cannot be in the room with me while I am hooking up or disconnecting. But she isn't afraid of the machine. She will just grow up with that being normal.

It's funny some days because now that she is older she picks up on a lot of the lingo of dialysis. One day, she was in the mall with my mom and she said, "GiGi carry me, my feet are swelling!" Its funny now, but then it bothered me. Nowadays, it's nothing for her to get in the car after school and ask how my BP is or did I take my meds today? One day she overheard me talking to Chris on the phone about my BP. It was slightly high and Madeline said, "Mommy go take a clonidine." If she sees me taking my BP she will ask, "high or low?" So she knows a lot for a 4 year old, but that's our life. I don't want to hide it from her and make her afraid.

She came home from school the other day and said, "Mommy, I want to be a doctor when I grow up." I said, "That is so good baby, go into nephrology and be a GOOD one!"

A Mothers Love

My mom has sacrificed so much over the last year. 2009 is a blur to everyone. I can't imagine how terrified she was in the beginning before we knew what was going on. As a mother myself, I gladly take this disease if it could mean Madeline won't have to go through it. And that's what my mom kept telling me and still tells me all of the time. She thinks she should have been the one to get sick.

She stayed in the hospitals with me, moved in to help take care of me, Madeline, help Chris and our house, she cooked and cleaned, drove me everywhere, made me eat, counted my fluid intake, got me back and forth to dialysis, held my hair while I puked, would get up with me in the middle of the night(so Chris could sleep) and on and on and on. She even hauled Madeline to ballet, school, parties and her other activities because I refused to let this disease affect Madeline (as much as I could. )She has done so much, I cannot even remember. She has had to go through something no mother should ever have to watch their child go through. But she is a fighter too! I think all of us have come through this stronger and closer than ever. Whether you believe it or not, we all need people. We cannot get through this life on our own.
So, thanks mama for being the best mama and nurse a girl could ask for!

PD ups and downs

Overall, my thoughts are this. IF you HAVE to be on dialysis, the PD nighttime cycler is THE way to go. You basically hook up to this machine and go to sleep and you get your dialysis for 8-10 hours every night. I have my whole day just like a normal person. I am blessed to have my husband. Of all of the angels in my corner he is my #1. He sets the machine up for me every night. Sure, I know how to do it, but he does it for me. I'm not going to argue with that. ( I really think it's because giving Madeline a bath is like giving a cat a bath.....so I do the bath thing while he hooks up the machine!) Either way he is my #1 angel and I believe some men would have walked away from this crisis early on, but not Chris. He is a fighter too!

Also, I only had to go to the dialysis unit once a month for labs. I will do anything to stay out of that place!

There are some down sides to PD but the good far out way the bad. For one, there are numerous alarms that can go off during the night if the machine doesn't like something. But that just becomes second nature and you quickly figure out what buttons to push to correct the problem. It is a very smart machine. My only real complaint is sometimes during my initial drain, I drain 0 MLs. I am suppose to drain out 1000 MLs initially but sometimes I just won't drain. Also, my first "fill" of the night which occurs after my first drain is a 5 pain on the scale of 0-10. I am really use to it now but it feels like really bad cramps or early labor pains. It only last for about 3 minutes but they do hurt like hell some nights.

Traveling on PD is not easy but possible. When we went to the Mayo clinic we drove. I was not willing to "check" my machine on a plane. I don't think it is fair I should have to "check" my machine. That machine is my kidney, my life line. Would you find it reasonable if an airline asked you to please check YOUR kidney? I don't think so. The machine is not that big either. About the size of an old school VCR. I will post a picture of it. Anyway, traveling requires lots of planning. Our supply company will ship all of my supplies and solutions to anywhere in the country so all we have to do is get there with me and the machine. That makes it easier. We just have to be really careful to make sure we order a correct amount of supplies for the duration of the trip. If I was still on hemo, arrangements would have to be made for me to get dialysis in whatever city we were visiting. I had to do this one time. I didn't like being in a clinic that I didn't know.

One minor down side is I cannot be submerged in water. So no baths only showers. That's no big deal. But I can't go swimming. That stinks. I really wanted to be the person to teach Madeline how to swim but at least I am alive to watch her learn!

But overall, PD has been and continues to be a blessing in my life. I consider my life normal now. If you saw me right now you would never know I had an 18 inch tube protruding out of my stomach. I try to wear clothes to disguise it. Mostly for vanity purposes!

Crazy Cravings

This something I meant to discuss early on but forgot. I guess when you cant eat a very big variety of food, other senses become heightened. Mine was smell. And I was strangely drawn to weird smells. The main one is the smell an air conditioner makes when you first turn it on. I was literally addicted to this smell. And what was so strange some days when I am puking constantly, I can go sit in my car in the driveway (not the garage) and smell the AC blowing and it would sometimes make my nausea go away. So, neighbors if you are reading this, that's what I was doing in my car, sitting and smelling the AC. Weird, I know! My family and friends got a big laugh when I would do this. One day my brother and I were driving somewhere and I suddenly felt like I was going to puke. I turned on the AC and put my nose right up to the vents. He said, " you know, dogs do that!" It was really funny!

You may wonder how smelling the AC got started. Back early on in 2009 I was on oxygen for months. One day I was at home with my parents and it was not a schedule hemo day. But I was needing a treatment bad. So my dad drove me an hour to dialysis. But the problem was I could not take my oxygen with me. So mama told me if I started having a really hard time, turn the AC on and breathe in that air. I did and that's where that addiction came from.

I still like that smell too! I don't go sit in my car anymore because for now the nausea is 75% controlled. I only puke about 2 time a week these days. But I like other smells that I use to hate. Like, rubber tires, the smell of an auto parts store, rain and towels hot out of the dryer. Just the little weird things in life make me happy!

An Insurance Angel

Most of the time when you think of dealing with insurance companies, comforting and pleasurable is not exactly the words that comes to mind. But my health insurance case manager is a true blessing from above. She has been in this with me from day one. I think the world of her and she has made this process so much more understandable and tolerable. When I was too sick in the beginning, she would come to my house to help me understand what was going on (on the financial side). And the financial side was a lot. It was nothing for me to open the mail and have medical bills ranging from the hundreds to thousands and thousands of dollars. Those bills freaked me out (still do if I see one). But she and Chris made a rule, I was too busy being sick to worry about the financial side of it all, so I was no longer allowed to open a bill. That was Chris' job. So, that was a relief. I still know how much it costs a month to keep me alive and the beginning of the year is worse until we meet our out of pocket limit. But as far as my caseworker goes, she is one of the wonderful things that has come out of all of this. She has gone to doctor appointments with me to iron out insurance stuff and is just an all around great person. Another angel in my corner!

Home from Mayo and guess who doesn't care?

The home town Neprologist. Wasn't interested in what Mayo had to say, didn't ask to see the final report and didn't care to have Mayo's contact information. I just do not get this. You have a rare case on your hands and as a doctor, you should be committed to life long learning and you could care less about a patient. Nothing really to say other than that. Pretty sad!

Welcome to Minnesota and 0 degrees!

It was very cold in Minnesota. I went to the Mayo Clinic with no expectations. I felt deep down something good would definitely come from this trip but I was by no means expecting a kidney transplant. We had been scheduled to be there the entire week. We initially had been given an itinerary of the week of all kids of tests, procedures, etc in preparation for a transplant evaluation. The Mayo clinic is so organized. It is a very busy, crowded place but the Mayo people have a system down to an art. You don't wait very long for anything. If your appointment is at 10, you will see your doctor at 10! That alone impressed me.

Mayo Clinic too is beautiful! It is full of restaurants and shops, you could literally go on vacation to the Mayo clinic! LOL!!!! And we never had to go outside. The entire clinic is connected underground by tunnels. So, the 0 degrees never bothered me. And you are there surrounded by other patients and their families and everyone is upbeat and hopeful. That's what you get at the Mayo Clinic. The best of the best in every aspect.

Before any doctor meetings I had to have labs drawn. The Mayo Clinic is very thorough. So they drew 18 vials of blood. But my fear of needles and blood by this point in the journey is so far behind me. They could have told me they need 50 vials of blood and for the Mayo clinic, I would have agreed. It feels good to have confidence in a medical facility.

My first meeting was with my Mayo Hematologist. He was brilliant. He knew everything on earth there is to know about HUS. I was so overwhelmed with joy. He was and still is optimistic about a kidney transplant in the future. Many pharmaceutical companies are interested in HUS and are looking to create a drug that will keep the HUS suppressed so that a kidney transplant could be possible. This was great news.

Later, I met with my Mayo nephrologist. This man was a genius too! He totally understood the HUS process and how it had affected my kidneys. He was very personable and extremely polite. However, he was not so sure I needed to be put through a lot of tests and procedures that week because I was not really a transplant candidate. He was also very reassuring of potential drugs in the future and felt that someday a transplant could be possible. He decided that he, Chris and I and the hematologist should all have a meeting the next day to discuss my case together and decide on a plan. This was unbelievable to me! 2 doctors willing to sit down in the same room and talk to each other about my case with me! Unheard of. That is why Mayo, I believe, is such an incredible facility. They worked together as a team (just like Barnes in STL) to work on this vary rare case. We all agreed that since the PD cycler was working so good for me and I was not in a medical crisis, we would just sit tight and wait for the right medicines to be developed. So, basically science needs to catch up.

So, the week was cut short but I was not disappointed. I had made great contacts with brilliant doctors, I had all of their contact information so we could keep in touch and they gave me HOPE. Which is all I really went there for, HOPE. It is a powerful thing. Since being home, I have kept in contact with them and best of all, they haven't forgotten me!

A HUGE thank you to that very special Barnes doctor who made it possible to get my foot in the door at Mayo. You are an angel in my corner!

Thursday, March 11, 2010

Factor H

Well, when I was at Barnes initially, they sent my blood work off to Iowa for some genetics testing. Although most HUS is caused by E coli and in children, a very small percentage of people with HUS are adults who have a gene. They test for three genes that have a mutation. The H factor, I factor or MCP gene.

Initially I received the results of my genetic testing and all 3 of my gene tests came back normal. When we began the transplant process I had to have the 3 genes retested to make sure for certain I did not have the gene. This time the results were not in my favor. I had the Factor H gene. So now I have a rare blood disorder that caused kidney failure and I also carried the gene for it. I was pretty devastated because I was so confident I would not have the gene. But I have come to terms with the gene. Apparently I had it the first 28 years of my life, the question that still lingers in my head is, what caused it to become active at age 28? So many theories.

Addendum

I would like to make one comment here. Not all doctors are bad. In fact, my PCP here in town is fabulous. I couldn't be more blessed to have him. And I hope my blog enlightens the readers to the fact that while not all doctors are bad, some are. Some really crappy people make it through medical school. And at the end of the day they are humans. They make mistakes. I have just experienced an absurd amount of human error and/or laziness. So if you are comfortable with your doctor or hospital, that's great. Just ask questions, get answers and never settle. Get second opinions if things don't seem quite right. I have learned in some medical arenas you get the medical care you demand......not necessarily the medical care you deserve.

Transplant Evaluation at Barnes

We decided to proceed with a transplant evaluation. It is a very long process. But I began to prepare for it. Going to the dentist to check for cavities, going to Barnes to begin a lot of testing and meet with a team of transplant experts. My family, Chris, Mom, Dad and Matt all were tested to see if I had any family matches. I am told family matches are rare. Turns out I have 3 matches. They test 6 different factors. My mom and dad were both a 4/6 match and Matt was 5/6 match. Chris is a different blood type but he was still a 3/6 match. Now I had the big decision of choosing someone to proceed forward with. After lots of souls searching and praying I chose Matt. He had been adamant about donating a kidney from day one. He was a very close, near perfect match and he is the youngest. And I think he would have been mad at me if I chose anyone else. I met with a brilliant and the most compassionate nephrologist at Barnes for a transplant eval. It would turn out that my case had to go before a transplant board and in the end I was rejected due to the HUS blood disorder. There was about an 80% chance HUS would attack my new kidney. I was really sad for a while. But this doctor I talk so well about from Barnes wasn't finished yet. She actually wanted me to go to the Mayo clinic in Rochester, MN for a second opinion.

The first case review from Mayo, I was rejected. But this wonderful Barnes doctor wrote a letter describing my age and determination and I was able to get in to see some of the countries best nephrologists and brilliant hematologists. So off to Minnesota Chris and I would go in December 2009!

This doctor from Barnes on my transplant evaluation team is amazing. She should be the role model for all doctors. I could tell she really cared about me as a person. She would go above and beyond the call of duty to help me out. I may not ever get a kidney, but I feel confident that if I ever do, she will have had something to do with it. Her love for medicine is beautiful and I trust her with ever ounce of my being. She is in this profession for the right reason! Even when she had to deliver me with bad news, she still gave me hope and would make it possible for me to explore the Mayo route.

My hematologist at Barnes is wonderful too. He is very easy to communicate with, he is great about calling or emailing me back to stay in contact and he just brilliant. I can really tell he has a compassionate soul and wants to see me be successful. I always feel in good hands in STL!

Perma Cath Removal

This thing had been in my neck for 7 months now. My mom and aunt had been staying on me about getting it removed. They were very afraid of possible infection. And a perma cath carries a high risk for infection. They kept repeating, "its not if it gets infected, but when!" Since PD was going well, it was time to remove this port. I had it removed here at a local hospital. I don't trust this hospital, but surely they could provide a simple outpatient procedure. The doctor performing the surgery was not very friendly but I don't expect that around here anymore. I just wanted a decent doctor. He gave me one shot of Lidocaine. One thing I have learned throughout my illness is I have a high tolerance for meds and a low tolerance for pain....not a good combo. He kept telling me I could only have one shot. But I could feel him pulling this out of my neck....not just pressure. He ended up giving me two more shots of Lidocaine. He said it was the deepest planted perma cath he had ever seen. Probably the reason it never got infected and because it was placed by a good doctor at Barnes

Now with this out of my neck it meant one thing! I could take my first shower in 7 months! I was really looking forward to it. I thought it would be so amazing. But to be quite honest, it was just a shower. I had become so accustom to my sponge baths and had them down to an art, that it is amazing to me what we CAN get use to. But I do love that really clean feeling you can only get with a shower. Little milestones!

Words of Wisdom

"Jill, just suck it up!" Not really what you what to hear when everything in your world feels wrong. But those 5 words had a huge impact on me. I was talking to my brother on the phone one day, I was complaining and feeling sorry for myself, and this is what he said to me. Initially I was pissed. I thought to myself, "how dare you say that to me! You don't have a clue what this feels like!" I wanted to tell him "people with kidneys don't get to say that!" But I didn't say anything....which is unusual for me. So I thought about it. It had definitely been many months since the beginning and maybe it was time to suck it up and move on with life. People were getting tired of the poor Jill attitude. So that is exactly what I did. I sucked it up! I thought I AM going to get through this and I AM going to live a normal life with or without kidneys. I am truly grateful to Matt for saying those words. He has supported me 110% during this battle. He has always been willing to give me a kidney if a transplant ever becomes possible but now he was able to help me get beyond the pity party I was throwing for myself. So from that point on, I was going to be even more of a fighter!
Thank you Little Bro!

Back home and life sucks again

Back home and life does suck. As much progress as I had made in the past few months, I was back at square one. Only this time in addition to vomiting, dialysis and other side effects, I was on an anti seizure med for precautions. And I was on this med because my home nephrologist dropped the ball. This drug was horrible. It caused bad memory loss. Complete chunks of time are gone, like a lost file on a computer. And when you have a seizure, you can't drive yourself. So now my family and friends had to drive me everywhere I went. I felt pathetic. I started back to work (4 hours/week) sometime in August 2009 and my mom would drive from her house, an hour away, to take me to work for two hours and then take me back home. She knew how important my job was to me and was doing it for my sanity. But the thing that makes me so mad, is those seizures were preventable. I have had second opinions about these seizures and other health care professionals say those seizures were avoidable. I had received negligent care.

We kept moving forward though. I soon was trained on my night cycler peritoneal dialysis machine. When you are on home dialysis you better have an extra room in your house. The amount of supplies it takes is unreal. A delivery truck brings all of your supplies to your house once a month. They come every month. The boxes are full of solutions that I use for dialysis. 1 box measures 12"x12"x18" and weighs approximately 11-12 pounds a box. And on delivery day, I will get anywhere from 20-40 boxes, depending on the order. So my wash room is now also a PD storage room. The nice part is, the delivery men bring the boxes in for me and stack them according to Chris' system of organization.

On my very first month to have my supplies delivered, I wasn't home from picking Madeline up from school (with my mom driving me). We came home and the delivery guy had left 30 something boxes in our DRIVEWAY! I had a very angry husband that night.

Our second stay at Barnes

I don't have any memory of being there so I can't really write about it. We were there for a week and a half. At some point, I started complaining of abdominal pain and the Barnes team performed an exploratory surgery but didn't find anything. But like our first visit with Barnes, the doctors, nurses and staff were all very professional and brilliant. So, if you are ever really, really sick, try to get to Barnes Jewish!

That's Not my Daughter!

I have no memory of this whatsoever. For all I know, my family is making this up for giggles...just kidding everyone. Apparently once we make it to Barnes at some point I "woke up" and thought I was still at the old hospital. I was confused, disoriented and cursing out of my mind! It is so embarrassing to tell the story but I am keeping it real. I cursed my mom, the nurses, the doctors, Chris, my brother.....anyone who was with me. And really bad words too! My mom went to the ICU nurse and said, "That's not my daughter in there. She doesn't act like that!" The ICU nurse told her patients do that a lot while in ICU and won't have any memory of it. The poor nurse acted like my verbal abuse was no big deal.

One night in ICU, I decided I wanted a hamburger. I told Matt to go get me one. He said he would ask the doctor. Apparently the doctor said no but I kept hounding and begging Matt for a hamburger. At some point Matt went to get the doctor so the doctor could tell me no and somehow I convinced the doctor to let me have a burger. So little brother Matt goes out to get me a burger. I am told he brought it back, I ate it and within minutes, was puking ALL over the room. Needless to say, I don't think I had anything else in ICU.

My family now laughs about that ICU stay. It definitely wasn't funny at the time, but now everyone just laughs about my behavior while on the unit. My only regret is, I cursed out the wrong hospital.

Memory Gone

Soon after I got the PD machine ordered, I was to begin training how to use it. It is a totally different process from the manual exchanges. So one day in June 2009, I go to work for the second time since the beginning of my illness. Up til this point, I had only worked 2 hours on one day in 2009. So I go to work and afterwards, I have a dentist appointment. I love going to the dentist. I never get nervous, in fact I look forward to the gas they give you....so relaxing. This day though, was different. I didn't feel quite like myself. I thought maybe the two hours I had just worked was too much for me. So I go back to the dental exam room and I ask the dental assistant to take my blood pressure because I felt weird. She put the cuff on my arm and pressed go. It was an automatic cuff and it kept pumping higher and higher and higher and we could not get a reading. She tried a couple of times with no luck. So my dentist came in with the old time stethoscope and cuff and took it the old fashion way. The first time he took it he said, "that can't be right?" So he took it again and got the same reading 225/176!!!!!! I was at stroke level. I started to panic so I called Chris. I told him my pressure and asked him what he thought I should do. He is very blunt and to the point. He said, "you have two choices, you can go to the ER or you can go home and die!" He put it to me like that because I HATE the ER here in town. But on this day I had no choice. So my dental hygienist drove me to the ER. She also stayed with me until Chris got there.

The rest of this story will become fuzzy which will make sense soon. The ER admitted me to ICU for observation. Apparently I spent 3-4 days there in ICU. My PD nurse came over to the hospital to start my PD training because I still needed dialysis. I am told my nephrologist here in town never came to check on me. I am also told that even though I was there for observation, nobody was observing me? I am also told my BP remain in the 225/176 range and increasing. This hospital was not getting my BP down. On what would become my last day in ICU, Chris and my PD nurse were in the room with me. Suddenly I began biting my tongue and convulsing. I was having a grand mal (tonic-clonic) seizure. Chris ran to get the nurse on the floor and I began having a second seizure and by the time he got someone to help me, I was on my third seizure. It would turn out, my blood pressure was so high and not being controlled, I had a ruptured blood vessel on my occipital lobe (stroke) which caused the seizures.

I am not conscious at this point and have no memory but friends and family say Chris lost his temper on a nurse and told her to get the nephrologist on the phone. Chris wanted me transferred immediately to St. Louis Barnes Jewish. (My hero)! I think he lost it with the doctor too and said he was going to take me out of the hospital and drive me to STL himself if they didn't make an emergency transfer. Within minutes they were calling for a helicopter. The helicopter got delayed due to a storm so I was loaded up in an ambulance and taken to STL.

To make a point I would like to say this. I stayed here for 3-4 days with my BP escalating and within 24 hours of being at Barnes, my BP was down and under control. Surprised?

PD training begins

In June I began my PD training. This would mean I would now do dialysis on my own at home. I began the manual exchange method. For anybody who can do this type of PD, my hats go off to you. For me the experience was not good. It is a simple process but you have to do it every 3 to 4 hours for 4 times a day. So, basically your whole life revolves around dialysis. I would get up at 5am drain out (I always have 2 pounds of fluid in my stomach dializing) and then refill my peritoneal cavity with another 2 pounds of dialysis solution. I would "dwell", that is what it is called when you are dializing, for 3- 4 hours and then drain again and so on and so on. Not much of a life. Plus, I had to be in a room, with a mask on, with the door shut and this totally freaked Madeline out. She was scared of the mask so she refused to wear one, which meant she was not allowed to be in the room with me while I was doing the "exchanges". I tried to get her to wear a mask but noway was that happening. Also these exchanges took at least an hour for me. My body was not responding very well to this treatment because for some people they can do an exchange in 30 minutes. So picture this, I am in a bedroom with a door shut for at least an hour and cannot get up meanwhile, a 3 year old is running through the house bouncing off the walls. Or she would stand at the door and cry for me. This was torture for us both! I could not do this type of dialysis. But I would have one more option. The night cycler.

With the night cycler, I hook myself up to a machine at bedtime and dialyzes while I am asleep for 8 hours every night. This made more sense for me to do it this way. Chris could help me set it up and be at home while I was doing it. He was there if something went wrong with my machine or Madeline needed something. I thought to myself, "this will work so much better and I will have my days free!" Unfortunately there would be a fight with the dialysis unit to get the machine.

The useless social worker felt like I was being "lazy" and just didn't want to take the time to do the manual exchanges. She totally missed the point about having a three year old to take care of! She then, proceeded to tell me, Madeline would need "play therapy" to sort out her "issues" with having a sick mommy. Okay, that was enough! First of all, I may have been a sick mommy but I was doing the best I could at the time. And as a pediatric occupational therapist, no social worker who doesn't even know my child, was going to tell me, my child needed therapy. If she needed it, I would have been aware of that and gotten her some help. But she was fine. This social worker really stepped over her boundaries that day, pissed me off in the process and I reported her to the clinic director. The social worker later had to apologize for her ridiculous comments and she had to order my machine!

The Impacts of Kidney Failure and HUS

During this part of my story I have ended hemo and will be beginning PD. So, I still have a perma cath in my neck and the tink off cath in my stomach. I am quite the mess!

Kidney failure and/or HUS has affected every single part of my body from the top of my head to the tips of my toes. Here are some examples. My hair began to fall out, my vision was affected badly by the HUS, my blood pressure is unstable, I passed out a lot, I puke daily, my parathyroid is over active, my colon is lazy, I am covered in bruises, I can only eat a handful of certain foods, I can only drink 32 oz a day, I have to wear clothes a little loose because of the tink off cath, I couldn't wear certain shirts due to the perma cat, couldn't shower for awhile, couldn't bathe for awhile, constipation, poor circulation in which there are times my toes feel like they will freeze off, must be in bed by 8 o'clock with PD, cannot stay out late without paying for it, body image issues, not feeling pretty or sexy for Chris, being unable to drive at one point, feeling like a lousy mother and wife, and feeling useless to society job wise. I also am not allowed to get pregnant, cannot take birth control, or ever get another vaccination. And I should TRY to not get sick. Because any of these 4 factors could potentially reactivate HUS. I still have HUS, always will, it is just in a sort of remission state. One thing change drastically, my personality. I have become a fighter! At times I don't even feel like Jill. And I guess in someways I am a new Jill. When you have to fight with your doctor constantly to just get mediocre care, it wears you down physically. So kidney failure and the HUS has taken a toll on me physically, emotionally, financially and spiritually. It also impacted my husband, my parents, my brother, my baby, my family, my friends, my coworkers....anyone close to me.

Trying to work.... a little

In May of 2009, I decided I would try to work a little and see a few of my kiddos. I missed my workplace very bad. I missed the kids, their families, my coworkers, my office, the smell of the clinic....just everything about the place I work makes me happy. So, since I am now disabled because of the ESRD, I can only work 4 hours a week!!!!! That was so ridiculous sounding but in all actuality, I couldn't even do the 4 hours my first week back. I was very weak still and puked at work. Very embarrassing! Turns out, my blood pressure spiked that day and I ended up in the ER here at the local hospital. I was a bit more compliant with them this time starting an IV and all and I only had to stay 24 hours. Needless to say, I wasn't able to return back to work for a few weeks. Some people say they have good bosses. My boss is a saint! She has been so flexible and understanding with me through out the entire journey and continues to be today. I wish everyone who works could be so blessed with a boss like mine. I don't know what I would do without her or my job!

Wednesday, March 10, 2010

The Walk Out!

My last day of hemo dialysis was bad. The next day I was to begin peritoneal dialysis (PD) training. My nephrologist was in the clinic making rounds. I asked my nurse if he would come over and talk to me for a minute. I had a few questions about the peritoneal. My nurse went to tell him I wanted to see him and he told her, "tell Jill I will see her tomorrow and he left." He didn't have an emergency he just left. He didn't feel like walking across the clinic, he just left. If he had walked over to me, he would have understood it was my last day of hemo and I was going to begin PD the next day. But he didn't take the time and I lost it. I was so angry. My blood pressure went through the roof. I was ready to call Network 13, a patients rights advocacy group in Arkansas, and report him and the clinic for everything that had ever happened. The nurses were worried and so was the director of the clinic. She is scared of the phrase Network 13! She came over to my chair and begged me to not call and report anything. She was willing to do anything to keep me quiet. I told her I wanted to talk to the doctor now or I am calling and reporting. You see, this was 6 months coming. I was the maddest I had ever been in my life! The director was able to get the doctor on the phone and I told him everything he had done wrong in the past. First, he knows nothing about HUS and I seriously doubt he even googled it. Second, he ripped out any shred of hope I had for kidney regeneration or transplant. Third, he was talking bad about me at a party to other people, HIPPA violation. Fourth, he was very inaccessible and lacked communication skills. And now, he has walked out on me and totally blew me off. I was so pissed. After I unloaded on him, all he could say was, "I'm sorry." He knew he was wrong and had been for a long time. We talked decent to each other for what seemed like a long time. At the end of the conversation, we agreed that since I was starting PD, we would "start over." So, I left that conversation cautiously optimistic that things were going to get better. Maybe as my PD doctor things would be better. Ha! Was I wrong!

Time for a change

My mom and Susie, my aunt and dialysis nurse....at a different clinic....kept telling me, "It's not if you get an infection with your perma cath, it is when." This had me very worried and was more of an incentive to start peritoneal dialysis. This is a type of dialysis you do on your own at home. There are two ways to do this. One, you can do manual exchanges 3 to 4 times a day or you can use a machine and dialyze at night when you sleep for 8-10 hours. The treatments are very patient specific. So, I had to get a "tink-off peritoneal dialysis cath" placed in my stomach. It wasn't a big deal surgery. I had a great surgeon (actually here in town) and a friends' husband as my anesthesiologist. He gave me a nice dose of Versed and everything was right with the world. He is one of the only people who have never had a difficult time starting an IV on me.

So, now I have a perma cath in my neck because I have to continue hemo for a couple more weeks (no shower) and now I have a tink off cath which means no bath. So for about 2-3 weeks, I was sponge bathing! This was horrible. I don't know how people who choose to not bathe choose that!

Once we were home from the surgery and the pain meds wore off, that PD cath hurt. Apparently it was rubbing my pelvic floor and was "looking" for a place inside my abdomen to settle. I couldn't move for about 3 days. I had to remain completely still until this cath settled and quit moving around. Every now an then it will shift and it reminds me it is there but other than that I have had no problems with my PD cath.

Are you really a nurse?

There are so many good nurses out in the world but all it takes is one bad nurse to leave a bad taste in your mouth. There was one at my outpatient hemo clinic. This nurse was hateful, loud and really rough with patients. I only had her a handful of times, but my few encounters were horrible. How clueless do you have to be to forget to put on gloves and a mask before you work on someones permacath? I also witnessed her not changing gloves between patients. My main nurse cleaned my permacath at every visit, but this one nurse didn't clean it at all. I also had to be wheeled out in a wheelchair to the car after hemo. After hemo I had no energy. She got me a wheelchair but expected me to wheel myself out! If I had that much energy, I would have walked out! I believe infection control is very important with a permacath in your neck and I did not take this lightly. I requested that she never touch me again.

People talk

Nothing is confidential. You think what happens to you in the medical setting will stay between you and the doctor, but that isn't always true in a small town. In February, my nephrologist was overheard at a party talking about me and my case. He was telling a friend, "I don't know what to do with her! If I have to, I will just send her back to St. Louis." Now, I am glad he is agreeable to send me to STL because that is where I would want to be if I was sick, but what kind of confidence can you possibly have, when your doctor says things like that? Not to mention, he violated HIPPA and patient privacy. I was so mad at him when I heard this. I didn't confront him about it until months later but this made an already bad relationship worse.

Not all Bad!

So, I want to share with you the bright side of dialysis.....for me anyway. I have never felt so much love in my life. My family, my friends old and new, my church family, my neighbors and my work family helped us out in so many ways. My church, neighbors and coworkers cooked us countless meals. I received cards daily. And I made some new friends. I became very close to a girl from the town I grew up in. We didn't know each in school but are close in age. We met while I was sick and were instant best friends. She sat through many dialysis treatments and many conversations of why me? She was actually the person who answered one of my biggest questions. I was so mad that I had the perfect husband, perfect child, perfect house, perfect family, huge network of friends and now because of my illness, I couldn't enjoy them. She simply said, "yes you can!" "You are still Jill!" That really sunk in....not completely because I still would "why me" for some time to come but that was the first glimmer of hope I had since my doctor here had ripped it all away.

Another good friend from church was literally a phone call away. I remember one morning I was home alone. Madeline must have been with my mom. I woke up at 6 am throwing up all over my bedroom. I called her and within minutes she was at my house. She cleaned up all of my puke which was literally all over my bedroom and bathroom. I am a messy puker! She stayed all day with me until Chris or my mom got home. I cant remember who relieved her but she took care of me all day! The outpouring of support from friends and family was unbelievable. I didn't know so many people cared but it was a blessing from above.

There is one really special person I have grown to know throughout my journey. I have never met this person but she is the only other person in the world who gets it like me. A friend of mine from high school found a support group for HUS on facebook. The group was for parents of kids with HUS, so I left a posting that if another adult ever saw it and had HUS, please contact me. I had totally forgotten about this post until one day I got an email from a girl I did not know. I remember I was sitting in my chair, that I sat in for 3 months, and I yelled for my mom. I said, "guess what! A girl with HUS just sent me an email!!!!" She was in the same exact place I was (healthwise). She had gotten sick with HUS in January of 2009 too, just one week after me!!!!! Our stories were so similar. She was 21 at the time. We have been really good friends, comparing notes and making this journey together ever since. She actually quit hemo and went to peritoneal dialysis before me and would eventually talk me into changing too. She is such an inspiration to me. She was always the upbeat one making me feel better. I hope I get to meet her in real life someday. She is such a sweet girl and I know God put her in my life. I am forever thankful an old friend would lead me in the direction of a new friend!

God and I have become quite close as well. In fact, I think I took him for granted before. But I know now I am only here by his grace. He is the one who put me in Barnes Jewishs' hands and He is the one who has worked so many miracles in my life since then. As my journey continues, He will work more miracles. It is so amazing to me the way life unfolds and plays out. And He already knows it all. He knows whats going to happen tomorrow and the next day and the next. And He will be there with me every step of the way. We have an amazing God who I love with all of my heart. I believe he left me here for a reason. There are other kidney patients out there who need help and I believe I am the girl to help them.

Valentine's Day 2009

While most couples are spending this special day together, my sweetie took me to the ER at our local hospital. It was a Saturday and I had been to hemo. If my memory is correct, my blood pressure was really high, but they let me leave the clinic. Going home, I became very confused and unresponsive to Chris. He got me home and inside the house and to bed. By this point, I was very disoriented and couldn't speak. He ran Madeline over to the neighbors house and carried me out side to the car. Off to the ER. I don't have a lot of memory after that but I remember waking up in the ER and I was in a very agitated state. Nurses were having a hard time starting an IV....partly because I wouldn't let them touch me. I have just had really bad luck here with IV's and this ER visit would prove to be the same. I think I was a pretty difficult patient in the ER that night. Seems like I was transferred to a room and was there for a day or two. The doctors here never figured out what caused the symptoms. The dialysis unit treated it like it was no big deal, but that is how they treat most things here in town.

Doctors Doctors Everywhere

My journey is long and continuous. It covers many states and has many opinions. I would like to start on a good note. My doctors at Barnes Jewish were top of the line. Like Susie says, "If your really really sick, get to Barnes Jewish." The doctors at that facility are very engaging, respectful, intelligent, professional and polite. But even more important, is that they don't give up on you. They give you hope, not false sugar covered hope, but REAL hope. They can do this because they are brilliant and good at their job. I have one of the best hematologists in the world at Barnes. Later in my story, I meet a brilliant nephrologist, who has opened so many doors for me such as the Mayo Clinic and Iowa. One of the lead nephrologist during my HUS stay was so kind and smart and everything you could want in a doctor. My lead immunologist at Barnes was able to make me smile even on days I felt like throwing in the towel. I cannot find enough positive adjectives in the English language to make you understand what a top notch facility Barnes Jewish is. I guess that is how you feel about a place when they save your life......twice. And I guess after receiving top of the line health care, it is hard to go backwards.........welcome home!

I don't even know where to begin. Everything I described in the above paragraph is the exact opposite of my experience here. And for the record, I want it to be clear that this is how I was treated. These were my experiences. Like they always say, there are two sides to each story and I am very aware of that fact, but sometimes there is a right and a wrong. I do not have grievances with our health care system. If it wasn't for the system, I would be dead. If it wasn't for medical advancements, I would be dead. But I also know there are good doctors and bad doctors and I have experienced both.

My family saw some of the crazy things that happened at my hometown hemo clinic. I have never been happier to have a family full of nurses, especially that dialysis nurse! If it wasn't for her, I would probably be very sick or possibly dead. She taught me about dialysis. The right way to do something and the wrong way to do something. I had an insiders view of this dialysis world. Unlike my fellow dialysis friends, I knew things were not right with this clinic. I watched the staff very carefully. You do that when your life is on the line. I had friends that witnessed some of the madness. Sometimes, it was just absurd what some of the staff would say or do.

I am a believer. I believe in God. I believe I have kidney failure for a reason. I believe that reason is to educate and help others get the health care they deserve. I am an advocate. I believe in the patients rights. I believe anything can happen. Although as I am writing this, my kidneys have been shut down for 15 months, useless. But I believe if God wanted to right now at this very moment He could heal these small, atrophied, peanut size kidneys. He could bring them back to life. I do believe that. Now medically does that sound reasonable, probably not. But here is how my hometown nephrologist put it to me. I was on hemo and had been for about 3 months. I asked him, "what would be a sign my kidneys were waking up?" He told me if I started urinating that might be a sign. So I prayed all of the time for pee!!! And one day I began peeing, just a little and by the time I saw him next month I was peeing about once a day. I am a believer and I believe that prayer was working. So at the next month rounds, I tell him about my urine! So excited and hopeful. He then asks me, "well what color is it?" I said "clear!" Because for a healthy person, urine should be clear, right? He said, "No! Your urine needs to be yellow to rid the body of toxins." Okay so I began praying for "Yellow Pee!" I had everyone I knew praying for yellow pee. So, by the next month, I am beginning to get interested in transplant information. He basically tells me this, " there is no point in doing a transplant because as soon as you got one, your blood disorder would re attack it and probably kill the new kidney immediately and we wouldn't want to waste a perfectly normal kidney." Then he proceeds to tell me about a lady he read about who had a DIFFERENT kidney disorder, and as soon as they attached the new kidney to her, it died. That is not hope. That goes completely against, "Do no harm!" That crushed my spirit and I lost hope for a little while and it was the beginning of a really bad relationship with this doctor. He may not have harmed me physically that day, but emotionally he did. No doctor at Barnes ever said that to me that way nor would they. I knew it was a possibility a transplant might not be an option but you have to give your patient some small amount of hope, a will to fight. It was still so early on in the game. He had no right to take that from me.

This is hemodialysis! My life for 6 months


The Renal Diet

While on hemo, I was not very compliant with this diet. I did stick to the 32 ounces part, but the food was a whole different story. I would eat good on the day after dialysis, but on the day of hemo, I would go out to eat somewhere bad for me like mexican, japanese, chinese, hamburger, etc.....because my theory was, the hemo machine would pull it right out of me. I could literally go into the dialysis unit weighing 160 pounds and leave at 150! Some of my friends were jealous....jokingly of course. But it wouldn't be until later on when I quit hemo and transition to a home dialysis called peritoneal that I would strictly adhere to the renal diet.

So what is the renal diet? CRAZY for one thing! I cannot eat anything with sodium, potassium, phosphorus, caffeine, dairy or wheat! Yeah, I thought it was totally unrealistic too! So basically you can't eat anything with sodium which is anything out to eat or in a restaurant. Nothing with potassium such as bananas, oranges, orange juice, tomatoes, beans, potatoes, etc. Nothing with phosphorus like chocolate, pizza, cheese, milk, honestly almost every item in the grocery store has phosphorus. No caffeine, ever! Nothing with wheat or wheat products and nothing with dairy.

I cheated a lot during my hemo days. But once PD started I would have to get real about my diet!

March 2010 What a difference a year can make!


I have lost about 50 pounds. Not bragging, just showing you physically what kidney failure looks like. The changes I have made. I wish I had a picture of Jan-March of 2009. I am unrecognizable during those months!

Me in November 2009


First picture of me in 2009.....April (I looked hideous Jan- March)


Me in 2008, a few weeks before getting sick, looking puffy!


Outpatient hemodialysis

Not a pleasant experience. In the beginning of hemodialysis (I will refer to it as hemo) I had to be there at 6am 3 times a week. So after being up all night puking and such, I got to wake up at the crack of dawn to have my body drained of all of my toxic blood! The very beginning of hemo is a blur. I would sit in an uncomfortable, pink plastic chair for 3 hours wishing I was dead. Much of the three hours I cried and cried and cried. Some of the nurses would try to talk to me but I wasn't ready to hear anything. I hated everything. I hated the sound of the machines, the smell of the clinic, getting bounced around from nurse to nurse because for the most part, they were use to little old men and women, not pissed off and depressed 28 year olds. None of them had ever heard of HUS so this was not comforting.

I rarely saw a doctor in the beginning. He says it was because I was always asleep when he made his rounds but still, at that time, I wasn't ready to talk. He already had a bad relationship with my family. I was too sick too notice or care at this point. However, I didn't like the dietitian we had at the time. She knew as much about dialysis and renal diets as a box of rocks. There were two social workers. One was very sweet and uplifting and the other should go back to the mental health setting where she belongs. The nurses varied. There were and are some really good nurses at the dialysis unit. But there are equally some bad, incompetent and lazy ones. I would be bounced around the nurses until one could finally "deal" with me. My main hemo nurse was awesome! I felt very blessed to have been assigned to her. She was one of the few in that clinic I could tell really cared about the patients. She would be an important factor in getting me through this horrible hemo process.

Once I got assigned to my main nurse, my schedule changed to 3pm in the afternoon. I would still dialyze for 3 hours 3 times a week but everyday I was getting stronger. I was so blessed during hemo days because I ALWAYS had a family member or friend take me to dialysis, sit with me through 3 hours of treatment and then take me home. Hemo days actually became tolerable. My friends took me to lunch before, taught me things, read to me, rubbed my feet, talked with me, just anything to make the time go by. I am going to attempt to list everyone who took me to dialysis. My mom, Chris, Susie, Matt, Daddy, Steven, Cynthia, Cheryl, Brenda, Erin, Martha, Tami, Meghan, Laura, Lori, Brooke, Amy, Beth and God bless you and forgive me if I left anyone out. They were my entourage. I would have NEVER made it through hemo without each of these wonderful people. Behind the scenes were neighbors like Shannon, Lois, Teresa and Mrinda helping me, Chris and my mom with Madeline. It seriously took a village when it came to hemo!

Welcome home and Mama moves in!

Now back home. This was going to be some of the MOST depressing next few months I have ever had. I was still swollen, vomiting every day and night and in a very deeply low place in my head. I still had a perma cath in my neck. This was my access line for hemodialysis. Because it was in my neck, it was a straight shot to my heart, so it couldn't get wet. This meant no showers! I had to take baths. In the beginning when I first got home my mother or Chris had to give me a bath because I was too sick to do it myself. They had to dress me and even try to feed me. Then, they would clean up my vomit after I ate. They were both in charge of my meds. I didn't know what I was taking, I just took whatever they brought me. They had it all figured out. This was a continuous cycle.

We had a chair in our living room sitting near a window. I sat in that chair for 3 months. I was angry, depressed, shocked, sad, pissed, felt sorry for myself, you name it, I felt it. The only good thing was, all 20 something blood pressure meds had made my headaches go away.

I thought life sucked! And really at that time, it did! Next came the issue of fluids. Because I am on dialysis and do not urinate, I could only have 32oz of fluid a day. Yeah, you read that right, 32 ounces!!!!! So basically, I could have a few sips of water here and there throughout the day. I would usually puke it up but there is something about kidney failure and water. I was thirstier than I had ever been in my life. Water was like a drug to me. I would fight Chris and my mom over water. My mom was dead serious about this water restriction. She melted an ice cube to know how many ounces an ice cube had, she melted and measured Popsicles, jello, anything that would turn liquid at room temperature counted towards my 32 oz and she was strict! I began to resent her and Chris. I knew in my head that were doing it for my own good but it was really like an addiction.

A funny thing I do remember about this time was, I use to "pretend" to go to the bathroom and brush my teeth and I would stick my head under the faucet and drink and drink and drink. They believed I was really brushing my teeth because I puked all the time. One day I got busted!

Some nights when everyone went to sleep, I would sneak in the kitchen and get ice cubes quietly, but that didn't last long either because within minutes of eating the ice I would start vomiting. And when I vomit it is loud. My mom is a very light sleeper and she would come hold my hair as I puked in a bucket. She would say, "I heard you hitting that ice machine!" But she understood and always helped me clean myself up after a good puke. Even the nights I didn't sneak ice, I puked. So we did this routine for about two months. I can't even remember how long she lived with us. But she was taking care of me and Madeline during the day and then Chris took care of Madeline at night and my mom took me.

Being sick, needy, dependent really took a toll on my mom and I for awhile. We got to where we argued like when I was a teenager. I hated not being in control of my life, my child, my house, my everything. I was a kid again....only really sick. But she stuck in there with me and put up with all of my crap. She is a nurse and I am her very worst patient ever!

Just as all of this is going on, I started to have REAL withdrawals! I had been on morphine, Demerol, dilaudid, phenergan, xanax, all kinds of pain killers. Now that I am home, the "feel good stuff" was all gone. I now can completely understand why an alcoholic or drug user can't quit. The withdrawals are some of the most painful things a person can experience. It's like your body has decided to hate you and punish you. I would shake constantly. I was freezing cold and then suddenly start sweating profusely. It made me vomit more. My back hurt, my legs hurt, my entire body ached a deep pain.

One day Chris was driving me to dialysis and he hit a pothole. I thought my body was going to fall to pieces it hurt so bad. Any small bump in the road felt like being ran over by a dump truck. I said some really bad things to him, but its not like he could do anything about the road, but I sure was mad! The pain would eventually go away once I got through my withdrawals.

With HUS, low platelet count is a very common symptom. So, if you touched me I would bruise. I was black and blue from head to toe. I got lots of hugs and people were so nice but their hugs hurt so bad, physically. It was just a nightmare. I was so physically weak I couldn't even pick up or hold my Madeline. There was honestly some times in the beginning I wanted to throw in the towel. But in the back of my mind there was always Madeline.

Real nightmares started happening at night too. I started taking Ambien for sleep and it is a crazy med! One night I woke up and really saw somebody hanging from the ceiling. For some reason, I wasn't scared but I woke Chris up to tell him. He flew out of bed so fast! It is funny looking back on it now. I said to him,"Who is that person hanging from the ceiling?" He was totally freaked out. Other nights I would wake him up screaming......and the screams never woke me up. I have no memory of it. One night he had to be out of town, so a dear friend stayed the night with me and took care of me. She said I woke her up in the middle of the night and asked her, " Who is that man standing over us?" This freaked her out too! Needless to say, Ambien did not stay on my med regimen very long!

Barnes Jewish Stay #1 comes to an end

It was finally over. I was going to get to go home. I thought, everything would be back to normal. I would still be on dialysis 3 times a week in my home town but at least I would be back with my baby girl. She came to visit me twice in the hospital but unfortunately those two times I was really sick and don't remember her being there. Other family members visited too and so did my wonderful boss, Lori. I do remember Lori's visit and I remember my brothers visit. I remember my brother, Matt, telling me, " if you need a kidney, you can have one of mine." I thought to myself, "it wont come to that, mine are going to wake up." But I was deeply appreciative to him for his offer. Actually everyone in my family was willing to get tested if I needed a transplant!!!!

So after about a month of near death, I was well enough to be discharged! I was still sick but I was going home. Or not so fast it would turn out. You see, northeast Arkansas had just been hit with an ice storm!!! No electricity! We had no place to go. Nobody in our family had electricity back home. So we had to stay at the Barnes Jewish hotel for a night or two, I can't remember how long we were at the hotel before we could make the 4 hour trip home.

I remember a nurse wheeling me out to the car. As we started getting closer to outside the walls of the hospital, I started crying. The nurse said, 'baby, this is a happy day, you are going home." And they were tears of joy but also scared too. As long as I was at Barnes I knew they could take care of me. But home was a different story. What if HUS came back? I remember getting in the car with Chris and crying hysterically. He asked what he needed to do, what is wrong, and I said, "just take me home." I think deep down I was amazed that I actually made it. That I actually lived through it.

The ride back to Arkansas was miserable. I puked most of the way home. Chris looked really depressed. He knew the journey was only really beginning. We got all 20 prescriptions filled before leaving STL because we were about to head home to where an ice storm had just come through. This made an already scary situation even trickier!

My "Fan mail"

Friends and family make a horrible situation more tolerable. There was not a single day during my month long stay at Barnes Jewish that I did not receive flowers, cards, messages, packages of goodies, phone calls, gifts, etc! It was unbelievable to me!

My coworkers at Sensational Kids sent me cards and care packages constantly. One day, I received this HUGE box. I was actually feeling really good and I wanted to open it. I was usually so sick, my mom or whoever was staying with me, would read me the cards or tell me who the flowers or gifts were from because I was too sick to do it myself. But the day I got this Sensational Kids care package, I felt like opening it myself. Inside were cards made by all of my babies at work, pictures they had drawn for me, letters from my coworkers, a picture collage my coworkers had made, and a tote bag with some of my kids hand prints on it. I burst in to tears of joy!!! I hadn't realized how much I missed my job. I was born to be a pediatric occupational therapist. I love my kids and their families and I have the BEST coworkers in the world. I am one of the few people in this world who LOVE their job and felt like I had found my calling in life. I was a strong advocate for autism in my community and knew my purpose and calling. I remember after looking at all of my wonderful things in the care package, becoming very angry at God. How could He do this to me? I helped people, I made a difference in children's lives and their families, I loved serving the community on the Autism board....it was my passion, my calling! I remember my mom saying these exact words to me, " maybe God has a new calling for you." I did not want to here that. My professional life was dedicated to children with autism or other disabilities. And I was determined at that very moment I would continue to be a pediatric occupational therapist. But my mom was also right, now I had a second calling. I would not accept this though for many, many months.

My church family was also very supportive. They became very supportive and a very BIG help to me and my family when I got home. I will tell you all about them in future posts.

Dialysis every other day

Dialysis became something I would do every other day at Barnes. I don't remember when but I did finally look at the machine. It is crazy! Basically this machine removes all of your blood (not all at once, over 3-4 hours) cleans and filters out the toxins in your body. It also removes some fluid from your body at the same time. Your body, unlike mine, does this naturally called urinating. So, my body was holding on to all of this waste, toxins and fluid and the machine would filter my blood for me. If you have ever seen a slurpy machine at a gas station, that's kinda what the dialysis machine reminds me of. Approximately 2 cups of blood are removed from my body out of one tube in my neck, runs through a lot of tubing and filters and through this miraculous machine and back into my body through another line in my neck with the clean blood. The whole treatment is 3-4 hours. My blood pressure was taken every thirty minutes. It was amazing though. I could enter dialysis with really high blood pressure, feel like death ans swollen and literally leave with fair blood pressure, weak because dialysis literally drains you and be 10lbs lighter!!!!

I really hated dialysis but truth be told, 30-40 years ago, my diagnosis would have been a death sentence. So this amazingly loud, beeping slurpy machine was keeping me alive.

Prognosis not good, but we are hopeful

Okay, HUS my blood disease is what caused my kidney failure. HUS is a very rare disease process. Prognosis in adults is usually bad. HUS is typically a childhood disease that a child could get from a certain strand of E coli. I had tested negative for E coli and I am not a child??? So, how did I get HUS? They would send my blood to Iowa, where the expert on HUS is at. It would be a few weeks before we would know any results. Since I am an adult I have atypical HUS, which makes it even rarer. The odds of an adult getting HUS is something like 1 in a million. Seriously, why couldn't I have won the lottery? But when you have a rare disease like this at one of the countries BEST hospitals, every doctor wants to see you. So, I had tons of doctors, teams actually. Each team would usually consist of the lead doctor, fellows, residents, interns and whoever else on that team was interested. There was of course the hematology team for my blood disorder, there was the nephrology team for my kidney failure, the immunology team, the general medicine team, the pediatric nephrology team (since HUS is typically in children) the neurology team (HUS can affect your brain). At any one time, there would easily be 5-6 doctors in my room. It was great to have so much good care and attentive health care professionals but it was also scary because you never want to be the person with something rare and virtually unheard of. Luckily for me, Barnes had seen HUS in adults and had experience with the disease, so I knew God had put me in the perfect place.

I don't remember which team of doctors this particular doctor came from, but my mom asked the question.....What is the prognosis here? This doctor was very honest. "At this point, we don't know." she replied. My mom was asking, "We don't know what?" The very sweet doctor told her honestly, she is very critical and at this point we just don't know if she will make it, it could go either way. We will know more as dialysis progresses. My mom did not share this information with me. Anytime I asked her, Chris or Susie if they thought I was going to die, they affirmatively said "NO! You have a 3 year old at home waiting on you" I know Susie and Chris truly believed I would live, but I don't think my mom was as confident. By this time everyone in my family was researching HUS, and it really did not look good for me. We were also wondering, IF I did live through the HUS, would my kidneys regain function? Initially, doctors thought there might be a chance that they could regain function. The docs had either seen or read case studies where after an attack of HUS, the patient would require dialysis for a period and then their kidneys would regain function. So, I latched on to the hope that maybe that would be my story too!

My goal at this point was #1 Live and #2 be on dialysis for a brief period and my kidneys would start working again. I kept telling myself. " they are just on a break, I am 28 years old. I know I wont be on dialysis indefinitely." Because honestly, I believed nothing like this would happen to me. Lesson here.....NEVER think that!

Dialysis begins at Barnes Jewish

So, the day I had been dreading finally came. Plasmapheresis treatments were not working, only making me sicker, blood pressure was through the roof somewhere in the 200's over 140's, I was swollen with so much fluid I was approaching the 200lb mark, creatinine was rising, all of my labs were bad pointing in the dialysis direction, migraines were unbearable, vomiting was a constant, constipation was a constant, I was no longer urinating......so yea, it was time to start dialysis.

By this time in my Barnes Jewish stay, we are around week 2 so Susie had gone back to Blytheville and Chris went back to work. So my mom was there with me for the next week. The one good thing about this whole ordeal is that I was NEVER alone! God Bless my family.

So, dialysis treatment number 1. I was conscious and very aware of where I was going. The Barnes transporters came to my room to wheel me and my bed to the dialysis unit. I failed to mention earlier I had gotten so big and was so sick I could no longer walk. And my job by trade is an occupational therapist and no PT in that hospital could will me out of bed. Plus I was pissed that I am a THERAPIST and I help others......not the other way around. Pride is a powerful thing!
Anyway, I have a headache out of this world. We get to the dialysis unit and all I remember is beep, beep, beep, alarm, alarm, loud, bright, beep, beep, alarm, louder, brighter, and on and on and on and on for 4 hours. I never once opened my eyes. So I didn't actually "see" my first treatment only heard it. At some point the nurse gave me a really strong pain killer because a dialysis unit by nature is loud. The machines constantly beep and alarm and you are only one of about 20 others getting dialysis, so their machines are beeping and alarming too. It really was what I had imagined hell could be like only freezing cold. The nurses are running constantly checking on patients and machines, so they get hot. Meanwhile, dialysis patients are laying there with their blood being drained feeling like they are in a frozen hell. I did have a great nurse that night. I never looked at her because my eyes were shut but she had a strong northern accent and talked to my mom throughout the 4 hour treatment. I don't remember theie conversation though.
I can't at this point describe the actual dialysis machine because I haven't seen it yet, but I will describe that remarkable life supporting machinery in later posts.

4 hours later I was wheeled back to my room....still in my bed.....and it would all start over the next day.

Monday, March 8, 2010

The Dreaded Big D is around the corner.....

You need a little back story before we begin dialysis. My aunt Susie I talk so much about is a dialysis nurse. Later in my story this becomes a very important factor because I do not believe it was a coincidence that of all of the disease processes I could have gotten, I got one that involved kidney failure. And I don't believe it is coincidence that of all of the nursing fields she could have gone into, she picked dialysis. That's not coincidence at all, that's God!!!!

As a little girl I had OCD bad. So bad, that I could not even go up to Susie's dialysis unit. I was a HUGE germaphobe! Sometimes my mom and I would be out and she would have to stop by Susie's dialysis unit for something. ONE time I went inside and the place freaked me out so much seeing the blood, machines, sick people, needles, etc.......I thought that the placed was what Hell would be like. It is odd to me looking back now on that experience. Because my first real life experience with dialysis would not be much different. I guess that experience as a little girl set the stage for something in my future, which would mean facing the biggest fear of my life!

Perma Cath Placement

I do not remember if this perma cath I had on the right side of my neck was placed before or after plasmapheresis treatments. But it was definetly placed before dialysis began. I remember the day of surgery when they came to get me for this procedure. I was very afraid. I remember going to the operating room with this very dreadful, doomed feeling. I remember getting some good drugs to put me under and when the surgeon came in the room to begin the procedure, he turned on the radio and it was Aerosmith. I suddenly felt calm and I knew everything would be okay!

After I woke up, I was faced with the reality that now I had a central line on the left side of my neck, a perma cath (which is not permanent by the way) on my right side of my neck and an IV in my arm. Not too happy about my "new accessories"!!!

Another procedure done around this time was when they discovered a blood clot in my right arm. I was sent to have a vascular ultrasound to see where it was located. I remember the girl doing the test was around my age and I could see the pity in her eyes she had for me. She began with my left arm which was all normal and then she moved on to my right side. She was taking a really long time looking at the right arm so I knew that this news was not going to be good. I remember asking her if she saw something and she said,"Do you want me to tell you what I see or let the doctors?" Well I knew at that point it must be bad. I think that they started me on heparin for a brief time but due to the HUS and low platelet count I didn't stay on it long. I think the location of the clot itself was not high risk for further problems. Soon I guess the clot eventually dissolved itself.

The Room

Pretty much the entire month of January of 2009 was spent at Barnes Jewish. After the first round of bad roommates, I had my private room for the rest of my stay. So I was in this private room roughly 3 weeks. I don't remember a lot about the room because I was unconscious on pain meds the majority of the time. It was very strange though. I am always cold.....can never get warm. And for whatever reason I would have that room as cold as an ice box. My aunt Susie always describes me laying on the bed with a cold ice pack on my head, a lightweight blanket on top of me and the air as cold as I could get it. All with it snowing outside! My family members would stay curled up in a ball in the chairs in the room trying to get warm. I remember on day Susie saying my lips were blue. But this was how I would keep that room for the length of my stay. It was all to try to keep me comfortable. There were times when Susie was there, she would be at the foot of my bed rubbing my feet and Chris would be at my head trying to calm me down or make the headache go away. When Mama and Daddy came up, Mama would be in the hospital bed with me rubbing my back or head and Daddy would rub my feet. They were trying anything to keep me comfortable. It seemed like every thirty minutes I was calling for pain meds. I really felt close to death. At times, I was so sick I didn't even realize I was sick. I think God does that to protect us.