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!