Alyssa had her transplant yesterday 10-26-10 at Rochester, NY. She was in the OR pretty much all day. I got a phone call from her dad around 2:00 pm saying the transplant was about completed and she had already made 150cc of urine in 30 minutes with her new kidney. That was really good news! She is the first adult in the US with aHUS to have a successful kidney transplant using the drug soliris. I am so happy for her and her family. It has been a long two years for them! It was amazing to watch science make advancements right before my eyes. We all need to continue to pray for her and her donor as the recovery process continues. And in your prayers please pray that HUS does not rear its ugly head in Alyssa. Yesterday was a miraculous day to me and I pray Alyssa has a lifetime of good days ahead!
Today, Madeline and I went to an early voting rally for Senator Lincoln here in Jonesboro and, we had the opportunity to meet here and shake her hand. Actually we hugged! She has worked very hard for the the National Kidney Foundation and Medicare with regards to transplants during her years in office. She was so nice and talked to Madeline and I for a good amount of time. I was really impressed with her. She was very interested in my story about dialysis and it was nice to meet a politician who listened.
This is an awesome story on my friend, Alyssa. You may remember me talking about her. We have the same blood disease and ironically were both sick and diagnosed in January of 2009. We met each other online shortly after and have been going through this process of kidney failure together. She is a very courageous woman and is having a kidney transplant at the end of this month. I am so happy for her! She will be one of the first people to use the drug Soliris to keep her from rejecting her new kidney. Her insurance company approved the use of the drug whereas my insurance company has denied me. I hope to visit her before her transplant. She is a pioneer in the world of kidney transplants and I am so proud of her!!!!!!!!! Please say a prayer for her that her transplant goes smoothly and she has a fast recovery!!!
I went to PD clinic today and everything went great. My lab draws went smoothly. No collapsing, rolling or bursting veins today. I am just so pleased with my Memphis clinic. I think being a part of a Fresenius clinic is the BEST decision I have made with regards to dialysis. And my nephrologist is so engaging and attentive. I have never met a doctor.....especially a specialist, who takes their time and is so patient. My doctor is amazing and I strongly encourage any patient with a chronic illness to find a doctor with these characteristics. There are so many docs out there but everyone deserves to be treated the way I am treated by this doctor. It really means a lot. The entire staff of nurses, dietitian and social worker are so helpful and professional. I feel so safe and in good hands. I feel truly blessed to have found a dialysis clinic with such high standards. So thank you East Memphis Fresenius!!!
Chris and I are back from our trip to Washington, DC. It was the first time, since being on dialysis, that I have flown with my dialysis machine. Everything went very smooth and I was able to take my machine on the plane with me. First, we did a lot of sightseeing. We saw the Capitol, the White house, the monuments, visited the Smithsonian museums and ate at some very yummy restaurants. On my third day there, I met with the National Kidney Foundation (NKF) and the other advocates who were there representing their state. I have made friendships with the other advocates that will last a lifetime. It was so nice to be in a room with people like me, who truly understand what I am going through. Everyone had very moving stories about their life on dialysis. As I was listening to their stories, I realized there are many terrible dialysis clinics around the country, like the one I originally started off with. How do these dialysis clinics stay open? How do they not kill more people due to cross contamination and laziness? People need to take a very close look at the people and facility in charge of their health care.
Meeting with members of Congress was empowering. It felt really good to tell my story. The members were very engaging in my story, asked questions and wanted to know what they could do to help. I told them that patients should have a right to choose their modality of dialysis treatment. Just because the social worker doesn't want to order the home dialysis machine or the doctor failed to inform you about it, is no reason any patient should be denied their right to choose. The members were in agreement with me that we SHOULD choose whether we want to do in clinic hemodialysis or home dialysis. It was a very successful day on Capitol Hill for dialysis.
I look forward to continuing my advocacy for patients rights. In the age we live in where everyone is entitled to and has the right to do whatever, our basic human rights for good, quality health care should not suffer. Helping other dialysis patients now and in the future is very therapeutic to me and I hope to make their journey in the world of dialysis a bit easier. If they've gotta be on dialysis, it should be on the modality of their choice.
You never know what life has in store for you. I got a call a couple of weeks ago from the National Kidneys Foundation asking me to speak in front of Congress in Washington, D.C. about home dialysis. Of course, I jumped at the opportunity. I am so excited to have my voice heard. From my experience with dialysis here in Jonesboro, doctors are not very open to the idea of letting a patient do their dialysis at home. It just does not make sense. Being on home peritoneal dialysis (PD) is much better for the patient and costs less than hemodialysis. Since being on PD, I feel like I have my life back. I can go to work (some) and be a contributing member of society. I was dead to the world on hemodialysis. And you may remember me talking about what a struggle it was here in Jonesboro with that dialysis clinic to get the chance to do PD. They made it very difficult for me. Since then, I have learned they make it difficult for many other patients too. So hopefully by speaking before Congress, we can change that process for future dialysis patients. It is and SHOULD be the patients right to choose what type of treatment they will receive.
The 2010 NKF Kidney Walk in Memphis, TN was a huge success. It was so uplifting being surrounded by my friends, family and work family!!!! The "Kidneys Not Included Team" raised $3140.00 and 1st place in the individual fundraising category. I am so thankful to everyone who donated and very thankful to those who made the trip to Memphis to walk. I am also very grateful to my Uncle Dick and Aunt Judy for hosting a wonderful after party. It was a blast!!!! Thank you to my parents for purchasing the tshirts and thanks to my creative brother, Matt, for designing them. My husband also made a wonderful kidney shaped cake. The day was a blessing and a true celebration of life!!!!!!! Can't wait til next years walk!!!!
I am so excited to be involved in the 2010 Kidney Walk of the West Tennessee chapter of the National Kidney Foundation. So far, I have raised over $2500.00! I am so excited and proud of and thankful to my friends and family who have helped make this possible. My mom and dad bought t shirts for everyone who is walking that was designed by my very talented brother, Matt! The shirt is soooo cute! The walk is June 5th at Rhodes College in Memphis, TN. After the walk, my Aunt Judy and Uncle Dick are throwing an after party! I am really looking forward to that too!!! This is such a special event to me and to have all of my friends and family with me makes the occasion even sweeter!!! I will post pics after the walk!
I just got a phone call from the University of Iowa Hospitals and Clinics. They had their pre-transplant board meeting to discuss my case and they have decided I am a good candidate for a transplant!!!!!!!!! I am so excited. In the past, this is where I am usually told no. But not this time. I am officially approved for transplant!
The down side to this is, unfortunately, my brother, mom and dad cannot be donors. This stinks because my brother is a perfect match. They are afraid that the blood disorder I have, which is genetic, could cause a problem in one of them. I wouldn't want to take one of their kidneys with a chance something could go wrong with them. However, they are still considering secondary relatives such as aunts, uncle, cousins....etc. They would PREFER to use a kidney from a living non relative and I am not a candiate for the donor (nonliving) list. I am not going to stress about it though. God has gotten me this far...a kidney will show up!
Dr. Thomas is also in the process of writing a letter to my insurance company. You see the drug I need (for a lifetime) to keep my HUS in remission costs a pretty penny. $300,000.00/year to be exact. But I have faith that this will work out too! I am just so relieved to here the words, "You were approved for a transplant!!!!" Music to my ears!!!!! xoxo JZ
Everybody deserves the best health care. Regardless of their economic status, color of their skin, the number of their age, level of education or any other factor, they deserve the best health care. Unfortunately, we cannot get the best, or even close, in this town. I have been blessed with knowledge and I am going to share it. So quit asking candid questions to patients. Patients have the right to seek better treatment. Or I suggest you offer them better care. JZ
Okay, I am officially a Hawk Eyes fan! Who would have thought Iowa City would be such a wonderful place. I really enjoyed our visit there this past week. And the news that they (UI) have figured out a way to do kidney transplants in patients with aHUS......well that is icing on the cake!
I did not go to Iowa expecting to here anything different from what I have been told by other major transplant facilities. But Iowa really seems to have this aHUS mess figured out. There is still a lot to learn about it of course, but I think UI is leaps and bounds ahead of anyone else in the country that I know of. I met with the aHUS expert, which was a real treat in itself. I felt like I was meeting a celebrity. Pretty much everything that is known about aHUS is thanks to him and his team. I also got to meet the head of Nephrology and Chief of Transplant Surgeries. I got a real good feeling from all three of the doctors. I felt safe and assured that they really get this aHUS and most importantly, were able to explain things to us. All of the doctors, nurses and staff we met were so nice and polite and willing to help in anyway possible!
I had 18 vials of blood drawn, EKG, and a chest Xray. They still need to do further testing to make sure I am a good candidate for transplant. I should know in the next few weeks what the future holds. I am just so thankful I had the opportunity to meet the experts on my diagnosis and learn more about it. A transplant will happens at some point. The science is getting so close.....it may be already there in Iowa!!
As the story with Iowa unfolds, I will keep you up to date with whats going on. But things there look really promising....and that's is all I need!
On Thursday, I received a certified letter from my "old Jonesboronephrologist". I do not know if all patients receive these types of letters but I have a suspicion I received one because I was so special!!! It stated, "I will be unable to provide nephrology (dialysis) services or other care for you in any capacity, including the ****ER, effective immediately. Should you find yourself in the emergency department at ******, the physician there will need to contact an alternative nephrologists locally or your nephrologist in Memphis." Okay, this is hilarious to me! 1.) Dear Dr. Incompetent, You never did a good job of providing me nephrology services in the past SO what in the world makes you think I would ever ask to be on your service again? Remember, I fired you. 2.) They would have to take me kicking and screaming to your joke of a hospital for treatment in the first place. There is no way I would seek treatment from you at your hospital. 3.) And yes, I would make the drive to Memphis or St. Louis.....you don't ever have to worry about treating me again. Sincerely, JZ
I got my PET results in and they amaze me. A lot of what I might say may be hard to understand, it is a lot PD dialysis lingo but you will get the point. For 10 months, I did PD through the Jonesboro clinic. I did a series of 5 cycles at night, for 8 hours, using (1) 5L bag of 2.5% solution, (1) 3L bag of 2.5% solution and (1) 1L bag of 4.25% solution, then I would dwell 1000ml during the day. This, apparently, was enough to keep me alive....but not much more. My blood work from the PET test revealed I was uremic and I had a creatinine of 16. To be frank, I was underdialyzed the entire time I was on PD here in Jonesboro. There is no wonder I puke every day and feel so yucky. Those poisons have just been building up in my body for nearly a year. What is so sad is the Jonesboro clinic could have fixed this.....it's not rocket science after all.
My new regimen following the PET is much more dialysis. My body has adjusted amazingly well to it. Now at night, I have (2) 5L 2.5% and (1) 1L 2.5% solutions and I do 4 cycles at night. During the daytime I dwell 2000mls. I carry around 4 pounds of fluid during the day but I am getting use to it. I will do whatever it takes to get a good clearance. According to the PET formula, I should be getting a clearance of 2.2 which is above Medicare standards. Medicare wants the minimum to be 2.0.........which I never obtained in Jonesboro.
I also have to get a weekly shot of epogen. This helps build up my red blood cells. I only got monthly shot in Jonesboro. I do hate shots, but I will do whatever it takes to make me better. I had a very in depth conversation with the dietitian, regarding my diet, which was nice to have. She was a well of knowledge when it came to the renal diet. All of this was a nice change compared to Jonesboro. It is just day and night when you compared Jonesboro health care to Memphis.....regarding dialysis.
So, I feel really comfortable now having done the PET. I know I am getting an adequate treatment at night and I have a team of professionals doing their job. Great Feeling!
Tuesday, April 13, 2010, I finally had my PET test. It wasn't too bad of a test. It took about 5 and a half hours but we got breaks in between. My mom went with me just in case I got sick....which I did. The test actually began on Monday. I had to do manual PD exchanges 3 times that day to prepare for Tuesday. Doing the manual exchanges really makes me appreciate my cycler machine. One bonus though, was Monday night I actually got to sleep in bed NOT connected to a machine. That was the first time in 10 months I was able to sleep at night like a normal person.
Tuesday morning I had to be "toxic" so Memphis did my first manual exchange. They wanted a sample of what had been "dwelling" in my body overnight. About halfway through the PET I had to have labs drawn. I wasn't expecting that and I guess it made me anxious. Before we got started, I puked up breakfast. In a few short minutes, I was ready for the lab draws. One of my PD nurses stuck me and got it the first time, so everything with labs went good. I am so blessed to have 3 wonderful PD nurses.
Towards the end of the PET, the dietitian came in to visit with me. This dietitian is very knowledgeable and taught me a lot of new things about the renal diet. She was able to help me liberate my diet a bit, which at this point a little is a lot! Most of my labs look great. At least the ones I can control with my diet. I cannot express to you what an important role diet plays in making me healthier. Each item of food that is placed into my mouth goes through much scrutiny. I think of food as fuel. It's not for pleasure, it is for survival. Anyway, a few of my labs that are not able to be controlled by diet are jacked up. The creatinine , of course, is totally screwed up from Jonesboro underdialyzing me for a year. Sure I am alive, but Memphis among other medical professions wonder how. I believe its God. Also my magnesium is a little high. We are having a hard time figuring out where the source of the Mg is coming from. Memphis will straighten that out too.
The only thing I learned Tuesday that kind of upsets me....a little...not much, is that I have to start giving myself shots weekly. They are Epogen shots to help with my red blood cells and raise my hemoglobin levels. It will also help me get fewer transfusions. Its only once a week in the stomach but I think I am going to have Chris, my mom or Susie administer it to me. I can do a lot of things but I am not ready to stab myself with a needle. Here is another tid bit of information.....Jonesboro use to give me this shot once a month and then they quit giving it to me all together. Now, I require them weekly? I guess I can add red blood cells as another thing Jonesboro didn't find important!
I really hope readers get just how important this PET test is. Especially if you happen to be going to a circus of a dialysis clinic such as Jonesboro. Every PD patient needs this test to accurately calculate the correct dialysis treatment best suited for them. It is a Medicare requirement. And if I didn't get the test in Jonesboogie Rockansas, I know for a fact the other PD patients are not getting the test. And what other tests or procedures are not being done at that unit? What about the poor Hemodialysis patients who are even more critical than PD patients? It is unbelievable to me that this clinic (Jonesboro) is able to get away with this way of practice.
My PET results will be ready Thursday or Friday so I will be posting my new dialysis regimen soon! And I will actually be getting dialyized! Wow, what a thought!
Just when I think I have heard it all.......something from the old, bad Jonesboro clinic comes back to haunt me. I would like to start off this post by saying I have always tried to have a positive attitude for the old PD clinics negligence, but today I think I have lost any and all respect for them.
So, I go to my first official PD clinic in Memphis today and let me tell you it was unlike any PD clinics in the past. Comparing Memphis to Jonesboro is like night and day. I got to meet with the doctor and the whole professional team. The doctor was knowledgeable, gave me straight answers and was able to explain my labs to me in a way I could understand exactly what each number meant. She was very professional and thorough....something I never experience here in Jonesboro. I left the clinic with a good feeling that these people are going to help get me well and take good care of me.
So here is the information I learned today. I started PD (peritoneal dialysis) in June of 2009 in Jonesboro. In June of 09 I should have been given a very patient specific and sensitive test to determine what type of solutions I should use to get a good clearance with my PD. Clearance basically refers to the amount of toxins I am removing from my body. You do this by urinating, but since I know longer have that ability I rely on my dialysis to cleanse my blood and pull off the fluid, that I cannot pee out. This test is called a PET test and takes 5 hours in clinic to complete BEFORE ever beginning home PD. Guess when the Jonesboro clinic did my test? NEVER! They basically pulled a generic solution prescription out of their "you know what" and said here try this! So here it is 10 months later and I have been UNDER DIALYZED this entire time. You read that right! For the entire time that I was at the Jonesboro clinic and on PD, I have not been properly dialyzed. My creatinine has been at 16! Yours is probably 0.7- 1.0. I should be somewhere around 5 or 6.....but no, Jonesboro was satisfied with 16! This also explains why I vomit daily. My old nephrologist here could never figure out why I puke all of the time.....but today I got my answer. Having all of those toxins floating in my blood makes you sick! Cannot believe he dint have the sense to figure that out. I have basically had one foot in the grave this entire time! If it wasn't for how strict I am with my diet, fluids and meds I probably would be dead. How did Jonesboro not kill me? How many others have they killed? (Would like to add that the Jonesboro clinic I attended has the highest mortality rate in the area.)
I have not been so angry until now. This doctor and his staff (Jonesboro) should NOT be in business. I don't think he should have a medical license. He has a license to kill in my opinion. You know, it's like a good friend of mine said. Its more than just numbers. These numbers reflect my body and how it is or isn't working. This is my life he was toying with. I mean, you go to medical school and become a nephrologist and you cant even correctly dialyze your patients? I am so disgusted with them.
But on the bright side, I have a great new team to work with. We are going to conduct the PET test next week to determine the right dialysis treatment that will be best for me. So at least I got out before it was too late. My new team feels confident that they will get me dialyzed correctly and help me get a good clearance. I am so blessed to have this new group. I also got to come off of a blood pressure med today! Bye Bye Lisinopril. That leaves me with only one blood pressure med! The new doctors are fabulous and intelligent and to be quite honest, these clowns here in Jonesboro are a joke! And if you decide to do dialysis here in Jonesboro, you might as well go on over to the funeral home and make arrangements........because in this town, that is your fate!
Take it from me, go to Memphis or STL or anywhere but this place!
It has been 16 months now that I have been living with End Stage Kidney Failure. The diagnosis itself sounds bad, so final. But really it is not. I had a very enlightening conversation the other day with my mother in law. We were talking about how bad my situation is some days and we were talking about all of the BS I have had to put up with along the way. I can look back now at my past experiences and realize, I have learned a lot and become much, much stronger. During our conversation she said something to me that has changed the way I look at the future. She said," I still pray everyday for you. I pray that God will work a miracle and wake your kidneys up. I know He can do it if he wants to." This really touched me. I think out of my family, friends, doctors and support group, she is the only person left praying for them to wake up. I have to admit myself, I had thrown in the towel on the possibility of a miracle at this point. But as we hung up the phone, I thought, God doesn't work in logic......he works in miracles. So, shame on me for giving up on the prayer of miracles. I pray daily to keep me alive and well to be with my family and friends, but I had given up hope that my kidneys might still wake up! I know a realist would tell me I am crazy.....that at this late in the game it would be impossible. It would be impossible for anyone, except God. So, thank you Ruthie for restoring my faith in miracles. Until our conversation I had accepted that this is it, but now I don't think so. I will continue to pray for a miracle, that my kidneys will wake up. And appreciate you for praying for this all along! Love, JZ
I have made a conscious habit of not naming names in this blog to keep the privacy of those I am writing about. Many of them have read it and the nasty emails I have received, have proven to me that they are able to identify themselves in my writings and hopefully, will make some changes to the way they practice medicine. In keeping with the no names policy, I do have one fabulous doctor to write about. He is a TRUE GEM.....in every sense of the word. He is my PCP who I think is the smartest doctor in this town! Not only is he intelligent, but he is very kind, patient and the type of doctor who looks for the positive in bad situations. When I leave his office, I feel better just from talking with him. He has the spirit of the doctors in STL and MAYO....so I think he could do way better than this town, but God knows I don't want him going anywhere.
I had to see my fabulous PCP this week because I have been sick. I had flu like symptoms earlier in the week with vomiting, fever and chills. By the middle of the week, I started having extremely low blood pressure readings. For example, 66/50, 62/51......I couldn't even stand up. The stomach bug/flu whatever I had is gone. It had to run it's course. As for my blood pressure, my doctor thinks we should cut back on my BP meds. We even talked about the possibility that someday, I might not need any BP meds! Can you believe that? I don't have functioning kidneys and I might not need BP meds someday. That will be a huge victory for me in the battle of kidney failure.
So, to anyone who thinks I don't like doctors in this town, then this post should prove you wrong. I am so blessed that I have this PCP. And just like his name, he is the most value among all others!
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.
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.
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 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.
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!
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
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 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.
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.
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.
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
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.
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!"
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!
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!
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!
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!
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!
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!
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.
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.
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!
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!
"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 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.
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!
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.
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 beganhaving 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?
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!