11-26-07 lab

My phos level for 11/26 was 6.3 which is up from 5.2 last month. Prat suggested that I take Renagel, but I am not worried about it because that was a couple of days after Thanksgiving andn i was still eating sweet potatoes, broc and cheese, cornbread, ham ... And God only knows what else. We had nachos that week. Another thing about that day, was I had not dialyzed since Saturday. Quiet as it is kept, Friday was a short session because I had an alarm and it WAS black Friday. I thought I was going to go shopping. I also did that tx late (around 11:30pm). On Friday I didn't even do a tx (I didn't have enough small bags of saline). and Saturday I did the tx off schedulealso. I ate like a dog for about a week after Thanksgiving too.


One thing that I have learned though is that I still have to remember that I am should be careful about what I eat because I dont' want too much junk floating around in my blood. But that's about all that I am getting out of that.

I also need to be aware that it is very important that I find ways (which I am working on now), to make getting on the machine easier and not take as long.

AS of this am I called Nxstage to make sure it is ok that for me to prime the machine the night before. They said that I have 24 hrs to prime before I have to use the cartridge. If I can go ahead and set up the night before that will be less time that I will have to spend on the machine the next day. We'll see. But, today I am getting off the machine at 11:30 even though I didn't get on until 920. I got on at 920 because I didn't get home until after 830.
Normally, I am not getting off until 1 or so. So, 1130 is good. I havn't been off at that time since, dare I say in center.

There's two times to do this.....

Pureflow

I still am not able to use my pureflow yet. This is about 4 weeks that I have not been able to ng use my pureflow. MY effluent pressures are high even when I am not using it. But I didn't get upset. I just went with it.

The first thing I did was I called nxstage. I learned my lesson last time. See, the last time I got an alarm 51, I didn't know to release the pressure and they say that I burst a valve in the pf. So, this time, I called as soon as I got the alarm. I stayed on the phone with them for a bout 30-40 mins. They told me to release the pressure numerous times, turn the machine on and off numerous time. I did it but the alarm didn't go away. When the guy suggested that it was the sak that was faulty I disagreed with him, but I changed it anyway and guess what. NO problems. I was able to make a sak. I did realize one thing though. I realized that I probaly shouldn't do that little trick where I hold those two lines when I am starting to make a sak. I think most of my problems with pf really started once I began doing that regularly. so, when I began this sak I didn't do that and I didn't have any problems with the batch at all.

Another problem I'm having is that Davita has not gotten back mywater cultures yet. I mean this is taking way too long.

Pureflow

This week I learned that taking the renavite might be important...Hahaha.

I think the renavite may have something to do with my fingertips hurting. According to something I read, neuropathy pain can be helped by using a multivitamin and folate and a B vitamin.

I had not been taking my renavites regularly. I am taking twice the dose now. But only for a few days. I think I am going to increase my folic acid also.

I am also using capsaisin. I have not used it in a couple of days though. On Sunday I did not have to do a tx but I realized something on Saturday..... unscrewing and screwing those lines hurts my fingers a lot. So, what I have decided to do is use my tools whenever necessary. On Thrs or Frid I decided that I would no longer be "tapping" taht kidney on my palm the way I was taught to. I fugured that over time that would cause too much damage to an already fragile area. So, now I "tap" the kidney on the machine.

So, today I am not having any pain or tingling in my left thumb or index finger. I am hoping that I can soon find out what works.

I also realize that I have not been taking my benadryl as diligently as I was when I first started HHD. I write that for two reasons, One is because my inflammation(the crackling) is not acting up too much without it. But Two, I think that my arm is more swollen up without it. So, I am back to taking Benadryl again. The reason I stopped taking it was because it made me so sleepy. I would take it before I began my treatment in the past. But it would make me so sleepy during txt. that I didn't really like taking it. See, once I would finish with my txt I couldn't go back to sleep. So, I stopped taking it.

But now I realize that I still need to take it, if not for the crackling, at least for the swelling in my arm that I am suffering with. (I noticed that since I stopped the Benadryl, I was having a lot of pain in my arm, during txt and even after txt was over.)
So, I figure that I had better start taking it again. This time, though, I am going to take it after I am finished with txt. and before I go to my other bed. This way I can get some sleep when I really need it.

Well, another bad day on dialysis today. I didn't get started on the machine until about 1030 or 1100 today. Long story. But once I got started I was ok. I even started talking to God about believing in myself and knowing that I can do this while I was sticking myself. Another thing Idid was to stick myself the way I did when I began setting the tunnels. To my amazement, I realize that I am not having as much pain when I am on the machine. Anyway, once I get all done, and I am ready to flush the prime out, I get an alarm 11. I try pullling air out of the top port, No luck, call Nxstage, NO luck. Start over.

The good thing is that you don't have to do anything with the bags. You can just leave them hanging there. But the cartridge must be reprimed. Another 20-30 mins.

I can do this. I can do this because I just went to the center yesterday and I know that I dont' ever want to go back there again and that whatever I have to do at home is nothing compared with going back there.

So, I take the cartridge out and start over. And here I sit 3 hours later, with 1 hour still to go . Gotta love it.

I figured out something today....getting up early and trying to finish dialyzing before going somewhere is not working. What I mean is that waking up at 1 or 2 in the morning is ok as long as I dont' have anything to do when I finish dialyzing. But if I have to drop D off or if I have to go to a Dr.'s appointment, I can't do the dialysis thing early in the morning. For one thing, I am too tired. For the second thing, it's not working. The two or three times that I have done this, nothing else has gotten done. The first day, D didn't make it to school. The second day, I didnt' make it to the dealership to have my car looked at. The third day, I didn't make it to see the Dr.

Other than that, not much else to say about dialysis.

I do this because....I do this for a number of reasons. The biggest reason is that I hope that it would afford me a longer life (doing more dialysis). It's a big undertaking, but I don't mind. dI am going to have to stop saying that too. It seems like I am saying so much because I want a reason to start hating it. But that would be very stupid because for the rest of my or at least until something better comes along I will have to do this.

But for right now, I don't mind this at all. What I really like is that I can really lay down. I mean lay down flat. That is important.

Erich made me think today. He posed the question about how we feel about having to start dialysis. It doesn't bother me. Maybe I haven't been in it long enough. But right now I have no qualms. Period. And to tell the truth I don't think I will. This shit is easy peasy to me. You can do what you want when you want. For me I just choose to try to keep the same schedule because of my OCD, but really I don't have to. I also can stay out as long as I want and then come in and strap up and go to sleep. It doesn't matter what time I get on and it doesn't matter what time I get off. It's all up to me. I decide. Like Monday morning I am going to get up when Dh gets up at (no I"m not, I don't have any money) NO, I can because this should be covered. It's doing the same thing it was doing before the tranny was overhauled. I'm going to do my tx at 2'00 in the am and be through with it. To tell the

To tell the truth thats how I should do it every MOnday instead of waiting until I get back with DS. It won't throw my schedule off either because I'm off on Sunday and the tx won't be too close together. I can just get up when DH does and come down here and sleep. And then when I get through at 0600, I am completely through for the day. I like that idea.

See, that's the good thing about having Nxstage here at home. I can choose how I want to do it. I can choose when I want to do it. I am free to choose. Not too many people in this life get to choose how and when they want to do their medical txs. I do.

What's up? Me not much. Just sitting here dialyzing. Today is the first day that I have ventured out before getting on the machine. It wasn't too bad because I was back home before 10:00. I was on the machine by 1040. Not too bad for a day when I accomplished something other than dialysis. Friday I have a Dr appt. I may tell J to take D and I can at least get on the machine for an hour (Nah, that ain't gonna work) I won't even be on for an hour if I do that.

Which brings me to a point. I am very funny about making sure that I stay on and get on this machine for the allotted time. I shock myself sometimes. In the 2 weeks that I have been doing this I have not once thought about skipping or cutting time. I guess that's because it's not too bothersome to get on the machine and since I don't mind getting on, it's no problem to stay on. Unlike when I was in center. I just wanted out of there. Well, at first I was ok with going. It was my "part time job". But after a while Ijust began to feel like I didn't belong there. Maybe I began to feel that way once I realizedd that home hemo was a possiblity. But I did get sick of it. I felt like I was getting too comfortable and I didn't like that.

RED 10 ALARM

I must not have tapped and snapped well today. I had so many "red 10" alarms that I had to call Nxstage. Peter was good though. He seemed a little nervous at first when I called, but after he calmed down, he was good. The alarms were letting me know that there was air in the venous lines, and I could see it too. when I pulled the blood through the syringe. Actually it alarmed multiple times before I even hooked up. I told myself to get the alarms resolved, and I htought I had, but I was wrong. ANywhoo, I learned a lot from the experience. One thing I learned was that I have to pull up out of the filter port. I was pulling straight out and not up and the air wasn't coming to the top. (Iknow what I am trying to say).

Once I got on, I wanted to go to sleep, no dice. Arterial alarm every time I laid down. So, in 6 mins I am going to go to sleep.

I am at home dialyzing. It's 8:37 and I have about 20 mins left. I have reached my fluid goal.

I went to the Center Thursday. Boy, I tell ya, I almost cried. I almost cried because those people looked so sad to me. I know that they are not, but that's the way they looked to me. Or, at least that's the way I felt when I was there. Sad. I didn't like it. But I really like this.

Right now I am sitting in the middle of this bed under a comforter. I am listening to Sade on the smooth Jazz station. My machine is humming along. It's Saturday morning. The lighting here is soft. The colors of my room are condusive to who I am. My pic of Audrey Hepburn is making me happy. I don't have to listen to or try to be entertained by anybody that I don't want to. My DH just sat on the sat on the bed for a short conversation. It's all good.

I'm doing what I am supposed to. I am wearing gloves. I am careful to make sure that I am not touching anything. I am general cleaning once I am finished. I am sure to keep things sterile. I have made "packs" ahead of time to save time. I am staying on the whole time(which passes fast). I fill my syringes with saline even though I have never had any need for them. I am disposing of my sharps properly. I am even making sure that I double bag the cartridges so that the garbage men won't be scared.

Well, it's time for me to come off the machine now. Time really flew by this morning. My first Saturday morning. Thank you Lord, for this privledge. It's 0852.

Day 3 on my own. Everything went fine today. No problems. I got on the machine at 955 and off at 1231. Tomorrow my pak will end. I'll have to make a new one today. I don't know if I will make it early or late.

I won't get on the machine until late though. I have to go to the center to sign some papers. I wish this could have waited until next week. But once it's over, it's over.

Friday, the last day of training for NxStage. Wow! This started out as something that I wouldn't even consider. I wish I could remember the day that I decided that I would even consider doing home hemo, but I can't. I do remember, though, thinking that I would never take that big machine home because I felt like it would be too much for Denz.

4 MORE DAYS OF TRAINING!!!!!!!!!

I have the pureflow at home. DH did a great job of running the wires through the attic and then down behind the sink. (That made me very happy). For those of you who don't know, I cried when they told me that it wouldn't be a good idea to connect and disconnect my machine each time I needed to use it. I thought that I could put the machine in the bathroom when I was making a batch and then disconnect it when I was done. For the drain part of it I just figured that I could run the drain line to the bathroom while I was on the machine and then wrap it up when I was done. Actually, I had seen a pic online that showed someone dialyzing with the drain line in a distilled water bottle. Gross, I know, but at least it would have been temporary and removable.
So, when I realized that I needed to have this thing hooked up to a water source most of the time, I was disappointed. But my Dh stepped up and took care of it for me. What he did was to run the wires from the bedroom thru the wall and into the attic. Once he got the wiring in the attic, he dropped it down into the wall behind the sink and then drilled a hole behind the sink. He had a little trouble with the tubing that was already on the sink. He had to replace the copper tubing because it was leaking. But other than that, it all seemed to go the way he wanted it to.

I took this as an oppurtunity to tell him that I thought that he was a smart guy with good ideas. I told him that because I started crying when the thing started leaking. I quickly got it together when he took us out to eat at Red Lobster.

Anywhoo, training is going. This is my fourth week. It's a lot to learn. Especially when you are trying to learn and sleep at the same time. What I probaly should have done is take a short vacation, but I didn't. I'm getting through it though. I still think I am a good student, but not as good as I would have liked to be. I am very tired these last two weeks. Mostly because I was not getting a lot of sleep last week, 2 hours at the most.

I am glad however that I will be finished next week. Another person that is training started before me, but won't be able to go home for another two weeks because he can't stick himself. Thanks to all those people at IHD and HDC for encouraging everybody to learn to self cannulate as early as possible. Because of that advice I began cannulating myself as soon as my fistula was mature. And because of that, I am ready to go home.

I remember those days back in-center when I was so adamant about needing to stick myself. I didn't even understand it sometimes, but I knew that it was something that I must do. I knew that in the long run, it would be to my advantage if I didn't give in and start letting "them" stick me. I also knew that I couldn't worry about what they thought of me.

During those days when my venous bh would give me such a hard time, I had to keep telling myself that it was going to get greater later. I didn't think I would ever get that one site to do right, but sure enough, with some determination, I kept trying. And before you know it, I was consistently getting a good stick on that one too.

I was supposed to have gotten my ancillary supplies today. That's syringes, gauze, tape etc....
I want to say that I don't know how I feel about it, but the truth is that I know exactly how I feel about it.

I'm officially under 100 kg. now. When I started dialysis Iwas 116 kg.

Well, week one of training is over. What are my thoughts? I love my machine!!!! I feel free already (even though I have to go 6 days). The set up and take down don't seem to be hard. I'm glad I don't have to go to the center!!!!! My lab is already better. They have told me to go back to eating potatoes. Yay Nxstage and more dialysis!!!!!!!

I realize now that 6 days a week won't be easy. But once I finish with tx each day it will be over. And if I can continue to feel strong enough to walk down 3 flights of stairs like I did today...I mean I just walked down 3 flights of stairs without thinking about it first. I just looked at the stairs and the next thing I know, I'm walking down them. Without even being scared that I will get half way through and get stuck.

I like going to training (for now). I like that Prat is good with my training daughter. I love the people that are over this center. If I didn't feel homage to Katy, I would transfer. I already feel normal and stronger. To tell the truth it's scaring me. I'm afraid that it's all going to go to the dogs. I once read about this guy who claimed that he was possibly "allergic" to nxstage and now that is stuck in my mind.

I must say that I am havingmore inflammation responses since I have been in training. now, I take Benadryl before I go to training. But that is because P made it clear to me why Dr. P suggested that I take the Benadryl. She said that he was probaly trying to "TREAT THE CAUSE OF THE INFLAMMATION" which is probaly an allergic response to my blood in the tubes.

Another delay, almost. Today I get the news that Nxstage is not releasing new machines to any new patients until they get this problem with the leaks fixed. I'm cool with that but what does it mean to me? Well, it means that the machine they ordered for me last week won't be coming. And so, that means that the only way I can go ahead and get trained is to go to Med Center. Fine with me. I'm just glad that they gave me some options. When they pulled those chairs up to me I just knew that they were going to say that Nxstage just ended the program and that there was nothing that I could do about it. So, when they said that I could just go to Med Center, I was relieved. I'm not excited about going to an unfamiliar place for training, but I'm going. To tell the truth, the people at this other center have been training people for years on this machine. It's probaly to my advantage to be going there for training. the other good thing is that one of the Nurse's will be going with me. That will make me a little more comfortable.

This brings me to another thought though. I am a private person. There has been nothing private about this last 5 months. But that is the reason that I am so eager to get home. I feel that once I am home, I won't have all of these strange people probing around in my life. At least not like this .

Overall though, I think this is good news. I think this is really where God wants me to be right now. I mean I am consistently sticking my venous bh now and I am a lot faster than I was 2 weeks ago. They even fixed the ongoing problem with my hemoglobin.

3 MORE DAY Saturday-Tuesday-Thursday

Now that they have changed the site, I am not sure what else is going to change, but they will have to let me know before they go on vacation. I guess I will have to call them tomorrow to see if they have any new infor.

adios

I need to document this stuff if for no other reason than for me to be able to come back and read it once it's all over with.

Today I finished Day 2 of my transplant testing. As far as I know, I am all finished and just waiting on the stress test from W. Houston. I also need to send them the stool occults. I didn't give them to them because I had liver the day that I was supposed to give them the specimen and they didn't want you to eat any red meat for 3 days before. I'm really going to have to stay on myself about getting this specimen to them. (I"m not good about that kind of stuff espcially if any significant amount of time passes).

Overall the process was pretty painless. Everything went pretty quick. All of my appointments were right on time and didn't last very long. The hospital was very efficent. I was surprised because I never thought of or heard of St. Luke's being a good hospital. I was really surprised at how big it was and it was really nice too. It was really surprising to me because I go over there once a month for lunch. I guess it's just the part that I see that I am not all impressed with.

I'm tired. I'm anemic. I am going to try to play around with some Total or Raisin Bran to see if it can increase my iron levels. I also know that I need to go ahead and step up to the next needle size to start getting some better clearances. (If it ain't one thing it's another with dialysis).

I'm sick today. My arm still hurts, and now I have right flank pain. It hurts when I breathe. From what I gather it's probaly an infection in my kidneys, but I don't have blood in my urine.

I don't want to go to

I think I start using the 16 guage needles today. Another hurdle to cross, but I'm game. Another oppurtunity to get these bhs set right. I taped alcolhol preps to my bhs this am. I am hoping that it will make taking the scabs off easier. The last time, I don't feel like I got enough off and I was quite uncomfortable.

My fistula arm is sore from my fall roller skating this weekend. I am glad that it is my

yesterday I used both my arterial and venous bhs. The arterial is definately set, but the venous aint' far behind. It's starting to get that bh look too. The problem that I was having with the venous is that it was not straight ahead like I thought it was. It was in fact, a little off to the right. I would like to give a shout out to C because I still wouldn't be using it if it weren't for him.

So, anyway the venous is starting to get that "sucked in" look to it too.

Thrs- Went to tx and put myself on. Well, I cannulated myself. First the arterial. That buttonhole is coming along well. I don't like the angle I went in though. I know that it was a different angle than I used Tues. For some reason I felt nervous. I guess it was because I am still at the mercy of someone else and I just quite frankly don't like it. I had to wait on A to finish sticking another patient. I waited an additional 30 minutes for that. I didn't mind waiting the 30 minutes but what I got for my time wasn't worth it.

Let me say that I don't want these people to do anything but teach me how to get myself on the machine. I only want them to teach me because the sooner, I learn this, the sooner I can come home and start my treatment. That is all that I want from them. My thinking is that if we will go ahead and take the extra time now to get me trained, then the sooner this will be over soon. So, what I call myself doing is trying to get in as much at each session as I can. I feel that if they take 6 sessions and really teach me everything that I need to know, t hat would be better than teaching me a little bit over twenty sessions. But I don't think anybody else sees it that way.

Anywhoo, I also started my venous buttonhole on Thrs. too. I like the placement of it also. It's sore today. It also has a little "heparin" bruise on it.

I didn't learn anything about taking myself down on Thrs. The girls just came over there and started unclamping everything so I didn't learn anything about the order you would do anything in. I was upset about that because I was willing to wait on my "trainer", but he told her to go ahead and "teach me". That didn't happen, but this is only temporary. That is why I am trying so hard to learn as much as I can as soon as I can. I don't like being at everybody else's mercy.

Tomorrow, my plan is to get there early prob about 0615 so I can get off the machine earlier. I am going to take my time and forget about everybody else. I am just going to concentrate on making sure that I get the angle right.

S-06-16-07

Went to the DL today. Got my arm hooked up with no problem. Ch is the nurse and I tell him that I could easily use the hole from T to start a real good buttonhole. He says "unfortunately we don't do buttonholes here". *huh?* "Well, yes we are going to do buttonholes here, as a matter of fact, the "buttonhole" lady was here Thurs." He claims he didn't know since he was off for 2 weeks. I say, well they (everybody else) has been knowing since March or April about me starting buttonholes. This upsets me on so many levels because I feel like the people who are taking care of me should know something that I am starting buttonholes.

Anywhoo, I guess he got mad and decided that I wanted for him to stick me in the same hole from Thurs. since I mentioned buttonholes. Now this upsets me too because if he had even read just one article about buttonholes, he would know that you must remove the scabs before you insert the needles. He didn't do that. The biggest problem with this is that I didn't realize that he had stuck the same hole until I got home after my treatment. I was so hurt. To think that I am trusting my life to people who really don't have a clue about simple infection control procedures really bothers me.

Now, when I go in on Monday I am going to have to make sure that the person who sticks me understands that they should not stick me in the same place without removing the scabs.

Anyway, I don't like having to "fight" like this. I feel like these people could just get on the computer one or two times and learn just as much about buttonholes as I have. I guess all that I can do now is be thankful for the handful of people who are taking the time to read information and learn about the new procedures that are available to DL patients.

Things like this get me really upset me and that is not good for me. My longevity will depend on me being able to handle things like this that come my way.

I was thinking about something today. Kidney failure happened to me. I did not ask to have to go to a clinic every other day for the rest of my life. But I have to. So, when I am not happy about having to go there is nothing wrong with that. It is not a character flaw. It is probaly a realist response to something so terrible. I mean most people with kidney failure have had years to prepare for this. I did not. One day I go to the DR. and the next day I am hooked up to a machine. Not every 38 year old girls dream. But considering what happened to me, I think I am doing pretty good.

So, I'll keep advocating for me. I'll keep advocating for my kids and my husband. They need me, I need me. I need to stay here and I need to stay healthy. Go on and cry. It will make you stronger.

Friday 07/15/07

Nothing much to say today. My thrill feels good. I felt great today. I went straight home after dropping D off at school. I guess I got home at about 0740 or so. I ate a bowl of Fruity Pebbles and watched the Jeffersons' and then Spin City until I went to sleep. Dh called and woke me at around 0800 but didn't talk too long. At around 3pm I woke up again and called the IRS. By calling them I realized that I am not receiving my mail. Went and took care of that. I stayed out until about 730pm. Came to work.


I read a great blog of a lady who has been on dialysis for the last 3 years. She gave a daily account of life on the DL(dialyzer). The only thing I don't like about her blog is that she has just received her transplant. But I do like that she spoke at length about her decision to wait on a transplant.

Which brings me to my feelings on a transplant. Although I know that the sooner I get a transplant, the better it will be for me, I am not intrested in hurrying up and getting one. Why? Because I don't think that getting a transplant is going to be the final answer to this kidney problem. I actually think that getting a transplant will cause more problems than I have now. I know that I really don't like the thought of having to take so much medication for the rest of my life. But I can honestly say that I don't know a lot about transplants either.

Right now I am just tryng to learn as much as I can about dialysis right now.