One of the many MANY benefits of PD is that there are very few diet and fluid restrictions. I'm not saying that you can go out and drink your face off, but on the whole, you can do almost whatever you please. Your labs will give you a much better picture if you're on the right track or if there are modifications that you need to make.
Like Rachael mentioned, she has cut out dairy. That is something I have also done, for the most part. I still add cheese to cauliflower, or drink milk every once in awhile, but not to any great degree. You ARE allowed some dairy each day, but once you cut it out, it's just easier to keep it out of your diet.
As you are balancing and adjusting your diet, one side effect you will notice is ITCHINESS. There's nothing you can do other than grin and bear it. It will go away. It's just your body getting rid of the extra phosphorus in your system. Itchiness can also happen if your dialysis isn't working at its best. Something to pay attention to!
Both Rachael and I have consistently struggled with our phosphorus levels. I imagine most PD patients do because it is in EVERYTHING. A couple of years back we kept up a running conversation about what we were eating in an effort to bring our phosphorus levels down prior to bloodwork being done. As soon as my bloodwork was done for the month, I would go and eat ice cream, buy sunflower seeds, and basically cram anything and everything phosphorus loaded into my face. :) As a "reward."
Lately I haven't cared all that much, however Rachael's post has actually gotten me thinking more long-term about my lab values. It is SO HARD to think long-term when it comes to managing a disease. You get so used to living with the thing every day, that you forget that it takes long-term daily management in order to have long-term good health. So her post about labs was a good reminder to me to behave myself and to care more about what I eat.
We do want to start posting recipes to help others of you out there with healthy eating and with learning about good recipes that don't make you feel like you're missing out on anything. We should also put up a list of foods you can and can't eat - or foods you can substitute. For example, Coke of any stripe is obviously a no (please ignore the Coke Zero on my coffee table, I "needed" the bubbles for a sore throat *cough*) :) However, you can drink A&W Rootbeer (we will accept sponsorship deals!!) because it is phosphorus-free. Be warned, though, rootbeer is HIGH in calories.
I'm looking forward to Rachael's next post about crazy dialysis questions. It should be funny!
RachelT
2013-05-30
Brace yourself. It's about to get REALLY boring up in here.
Okay. Here is the deal. Labs are part of the process of doing PD. We can't ignore them. (Yes, sometimes I only pretend to care about them. But I know they matter.)
I'll give you a future post answering some of the oddball questions I had when I started doing PD in exchange for the chance to put some lab information in here. Deal?
As a PD patient, I have my labs drawn every month. That's the fussy part of the system in the US. My personal opinion is that the system is completely jacked up. I am smart, able to care for myself, and compliant with my treatment. Why they need to see me twice a month (clinic and Nephrologist) is beyond me and very inconvenient. If I choose a dialysis modality that encourages independence, why wouldn't you just give me a slip to see a phlebotomist every month and just call me if there's a concern? Honest thought: The PD system I have in the US sometimes treats me like I can't be trusted. And it's annoying.
However, it is infinitely better than hemodialysis and multi-week clinic visits. Believe that.
Moving on. Labs are related to what I eat, how well my dialysis works, and what medications I take. As you know, kidneys are miraculous filters and keep our bodies clean. Unless you are me. And they pooped out (so to speak) a long time ago. Now I have PD, dietary limitations, and medications to help my body function as well as it can. Maybe not as perfectly as a body with A+ kidneys, but pretty darn good.
I will give you an overview of the main laboratory concerns for PD patients. Your mileage may vary - this is what I get tested for every month. I am providing the "goal numbers." These are the lab values the nurses and docs would like to see each month. If my numbers are significantly higher or lower, we talk about what needs to be done to adjust them. Medication or diet. Possibly my PD prescription.
1. Albumin. This is a count of my protein stores. Having plenty of protein means you can heal more easily, prevent infections, and stay strong and energized. (Goal number: 3.5 or greater)
2. Potassium. Keeps the heart and nerves working well. Fruits and veggies help with this. (Goal number: 3.5 to 5.5)
3. Calcium Corrected. Healthy bones and heart need calcium. But not too much. (Goal number: 8.4 to 10.2)
4. Phosphorus. This is the tricky one. Because phosphorus is found in EVERYTHING DELICIOUS. The problem with dialysis patients is that we store phosphorus. And too much can cause bone disease, deposits in the heart, lungs, eyes, joints, and blood vessels. This is the lab value that most dialysis patients will be reprimanded about. Because, seriously, it's all about yummy foods. We are told to avoid dairy, beans, many starches, packaged foods like pancakes mix and biscuits, soda, nuts and seeds, chocolate, peanut butter, pizza... etc. So, do we? NO. We take a medication called "binders" to help grab on to the phosphorus and move it out of our bodies through the bowels. Binders could be an over-the-counter supplement or a prescription pill. Some folks need a little - some need a lot. It kind of depends on your diet. (Goal number: 3.0 to 5.5)
5. PTH Intact. Parathyroid hormone. If it is high, it can cause bone and heart disease. This works in direct relation to phosphorus. When your phosphorus numbers are good, the PTH tends to fall into line. You may need oral active Vitamin D to help this process along. (Goal numbers: 150 to 600)
6. Hemoglobin. Red blood cell count. If low, you might need a medication such as Epogen (epoetin alfa). Regular injections of this will stimulate red cell growth. I've been on it when I need it, off it when I don't. (Goal number: 10 to 12)
7. KT/V Total PD. This is a measure of the adequacy of your PD. It shows how well your body is being cleaned by dialysis. If you have adequate dialysis, you will probably feel better, eat better, have fewer hospitalizations and illnesses, and could potentially live longer. This is tested in the US every three months. (Goal number: 1.7 or higher)
There are other issues, such as iron and cholesterol, but these are also routinely addressed with a primary care physician.
So, what does all this mean? Whatever you want it to. When you start PD, you'll get a report with these lab items. You can talk to your nurse/doc about the values. They'll probably tell you the basics about how to get them in line if you are high or low on the values. And you can decide if and how you want to deal with them.
Your numbers are a little off here and there? Not necessarily life or death. Consistently, seriously, off labs? You might think about what you eat and how you take your medication. Everyone is different. And labs are not something to obsess over. The goal is to feel as good as you can each day. Do your best. Do what you can. And live your life.
Some people find that they enjoy changing their diets drastically to avoid the need for medication. Some people really aren't bothered by the lab values and live the way they want to. Your PD support staff will tell you all the possibilities and all the possible solutions regarding lab issues. They won't take over your life - they are a guide for better living. It is up to you what you want to do about them.
I'm not saying you should eat with abandon and not take your medications. I'm saying that you can use common sense and the best of your abilities to find a comfort zone with labs that works for you. My personal experience? I like good lab values. I gave up dairy. I take my binders. I do my best. But not every single day. I am a human being and, therefore, eat pizza once in a while. My lab values and numbers fluctuate every month. Because I am alive. And things change. I change. So I just do my best and am glad to have a chance to do my dialysis the way I want to and try to keep moving forward.
Labs are nothing to be scared of. They're just boring.
I'll give you a future post answering some of the oddball questions I had when I started doing PD in exchange for the chance to put some lab information in here. Deal?
As a PD patient, I have my labs drawn every month. That's the fussy part of the system in the US. My personal opinion is that the system is completely jacked up. I am smart, able to care for myself, and compliant with my treatment. Why they need to see me twice a month (clinic and Nephrologist) is beyond me and very inconvenient. If I choose a dialysis modality that encourages independence, why wouldn't you just give me a slip to see a phlebotomist every month and just call me if there's a concern? Honest thought: The PD system I have in the US sometimes treats me like I can't be trusted. And it's annoying.
However, it is infinitely better than hemodialysis and multi-week clinic visits. Believe that.
Moving on. Labs are related to what I eat, how well my dialysis works, and what medications I take. As you know, kidneys are miraculous filters and keep our bodies clean. Unless you are me. And they pooped out (so to speak) a long time ago. Now I have PD, dietary limitations, and medications to help my body function as well as it can. Maybe not as perfectly as a body with A+ kidneys, but pretty darn good.
I will give you an overview of the main laboratory concerns for PD patients. Your mileage may vary - this is what I get tested for every month. I am providing the "goal numbers." These are the lab values the nurses and docs would like to see each month. If my numbers are significantly higher or lower, we talk about what needs to be done to adjust them. Medication or diet. Possibly my PD prescription.
1. Albumin. This is a count of my protein stores. Having plenty of protein means you can heal more easily, prevent infections, and stay strong and energized. (Goal number: 3.5 or greater)
2. Potassium. Keeps the heart and nerves working well. Fruits and veggies help with this. (Goal number: 3.5 to 5.5)
3. Calcium Corrected. Healthy bones and heart need calcium. But not too much. (Goal number: 8.4 to 10.2)
4. Phosphorus. This is the tricky one. Because phosphorus is found in EVERYTHING DELICIOUS. The problem with dialysis patients is that we store phosphorus. And too much can cause bone disease, deposits in the heart, lungs, eyes, joints, and blood vessels. This is the lab value that most dialysis patients will be reprimanded about. Because, seriously, it's all about yummy foods. We are told to avoid dairy, beans, many starches, packaged foods like pancakes mix and biscuits, soda, nuts and seeds, chocolate, peanut butter, pizza... etc. So, do we? NO. We take a medication called "binders" to help grab on to the phosphorus and move it out of our bodies through the bowels. Binders could be an over-the-counter supplement or a prescription pill. Some folks need a little - some need a lot. It kind of depends on your diet. (Goal number: 3.0 to 5.5)
5. PTH Intact. Parathyroid hormone. If it is high, it can cause bone and heart disease. This works in direct relation to phosphorus. When your phosphorus numbers are good, the PTH tends to fall into line. You may need oral active Vitamin D to help this process along. (Goal numbers: 150 to 600)
6. Hemoglobin. Red blood cell count. If low, you might need a medication such as Epogen (epoetin alfa). Regular injections of this will stimulate red cell growth. I've been on it when I need it, off it when I don't. (Goal number: 10 to 12)
7. KT/V Total PD. This is a measure of the adequacy of your PD. It shows how well your body is being cleaned by dialysis. If you have adequate dialysis, you will probably feel better, eat better, have fewer hospitalizations and illnesses, and could potentially live longer. This is tested in the US every three months. (Goal number: 1.7 or higher)
There are other issues, such as iron and cholesterol, but these are also routinely addressed with a primary care physician.
So, what does all this mean? Whatever you want it to. When you start PD, you'll get a report with these lab items. You can talk to your nurse/doc about the values. They'll probably tell you the basics about how to get them in line if you are high or low on the values. And you can decide if and how you want to deal with them.
Your numbers are a little off here and there? Not necessarily life or death. Consistently, seriously, off labs? You might think about what you eat and how you take your medication. Everyone is different. And labs are not something to obsess over. The goal is to feel as good as you can each day. Do your best. Do what you can. And live your life.
Some people find that they enjoy changing their diets drastically to avoid the need for medication. Some people really aren't bothered by the lab values and live the way they want to. Your PD support staff will tell you all the possibilities and all the possible solutions regarding lab issues. They won't take over your life - they are a guide for better living. It is up to you what you want to do about them.
I'm not saying you should eat with abandon and not take your medications. I'm saying that you can use common sense and the best of your abilities to find a comfort zone with labs that works for you. My personal experience? I like good lab values. I gave up dairy. I take my binders. I do my best. But not every single day. I am a human being and, therefore, eat pizza once in a while. My lab values and numbers fluctuate every month. Because I am alive. And things change. I change. So I just do my best and am glad to have a chance to do my dialysis the way I want to and try to keep moving forward.
Labs are nothing to be scared of. They're just boring.
2013-05-29
ClinicVisit - Canadian Edition
Clinic visits are a regular part of the routine, much like regular blood work. When I first started on PD, I would have clinic visits every 3 months and the routine was very similar to what Rachael described here: Rachael M's clinic visit. However, because I am a healthy dialysis patient, my nephrologist switched me to every 6 months (ok, HE didn't switch me, I negotiated for that) :) And right now I'm almost at the 9 month point since my last appointment (scheduling conflicts, bad patient, etc). I also only go in roughly every 3 months for lab work. Mainly because I despise having my blood drawn.
So, I'm going to do a brief comparison of clinic visits.
1. Arrive at clinic, refuse to step on the scale and give them my weight from home (which I will possibly lie about. I used to lie all the time, but now I don't - mainly because I lost a bunch of weight and am now OK with the truth) :)
2. PD nurse checks blood pressure while inside I freak out because guaranteed it's going to be elevated. Play images of Hawaii in my head to force myself to relax.
3. Go through chart with PD nurse, making any updates on medications, or noting any questions I have. I check through my labs with the nurse to see if anything is of concern. Usually told to increase my protein intake and that my phosphorus levels need to come down. Of course they do, I eat sunflower seeds all the time. I know why the phosphorus is high.
3.5. Refuse to see the dietician. I know what my food issues are. I know what I need to or should change.
4. Because I go in every 6 months, it'll be time for a catheter change. This is NOT the whole catheter - just so you don't think that you need surgery every six months! You don't. They change the tube at the end. The PD nurse will do this while we wait for the nephrologist to show up. It takes about 15 minutes - the nurse will wash and glove up and then take off the dressing over the catheter (ouch), switch out the tubing, and redo the dressing. I leave them to it and then change the dressing as soon as I get home because it's never done the way I like it. But that's OK, because they can't learn every patient's personal preferences for how their dressing is done.
5. Wait for the doctor.
6. Still waiting.
7. My rock star doctor hustles in - he's the only nephrologist in the whole region - so the man is BUSY. And he is a bit of a rock star. He's got spiky hair, he's in a rock band, he's overall an awesome guy.
8. We argue over my blood pressure. I refuse to change any or increase any medications (if I can do it through diet, I'll try - HAHAHAHHAHAHAHA). We talk AGAIN about why I don't want a transplant. He asks to see me again in 3 months, I say 9, we agree on 6 and he goes on his merry way, telling me to take care.
9. The PD nurse comes back in and checks the instructions and we book an appointment for 6 months down the road. She hands me a bag with any supplies I've requested that Baxter doesn't supply, and I leave.
The whole appointment takes about an hour. I'm not a non-compliant patient, but I believe very much in being the one in control. I know what my lab values should be and what they all mean. I am not hesitant in saying no to medication. I do not lie to my doctor, but I am the one living with this. He can understand to a point, but he would also like to see me with a transplant. To me, right now, a transplant doesn't make sense. Or rather, the benefits do not outweigh the risks. When I get to that point, then I will move forward with a transplant, but I'm not there yet.
I think that'll be a good future topic: the benefits of PD versus hemodialysis and transplant.
Any questions or comments, feel free!
RachelT
So, I'm going to do a brief comparison of clinic visits.
1. Arrive at clinic, refuse to step on the scale and give them my weight from home (which I will possibly lie about. I used to lie all the time, but now I don't - mainly because I lost a bunch of weight and am now OK with the truth) :)
2. PD nurse checks blood pressure while inside I freak out because guaranteed it's going to be elevated. Play images of Hawaii in my head to force myself to relax.
3. Go through chart with PD nurse, making any updates on medications, or noting any questions I have. I check through my labs with the nurse to see if anything is of concern. Usually told to increase my protein intake and that my phosphorus levels need to come down. Of course they do, I eat sunflower seeds all the time. I know why the phosphorus is high.
3.5. Refuse to see the dietician. I know what my food issues are. I know what I need to or should change.
4. Because I go in every 6 months, it'll be time for a catheter change. This is NOT the whole catheter - just so you don't think that you need surgery every six months! You don't. They change the tube at the end. The PD nurse will do this while we wait for the nephrologist to show up. It takes about 15 minutes - the nurse will wash and glove up and then take off the dressing over the catheter (ouch), switch out the tubing, and redo the dressing. I leave them to it and then change the dressing as soon as I get home because it's never done the way I like it. But that's OK, because they can't learn every patient's personal preferences for how their dressing is done.
5. Wait for the doctor.
6. Still waiting.
7. My rock star doctor hustles in - he's the only nephrologist in the whole region - so the man is BUSY. And he is a bit of a rock star. He's got spiky hair, he's in a rock band, he's overall an awesome guy.
8. We argue over my blood pressure. I refuse to change any or increase any medications (if I can do it through diet, I'll try - HAHAHAHHAHAHAHA). We talk AGAIN about why I don't want a transplant. He asks to see me again in 3 months, I say 9, we agree on 6 and he goes on his merry way, telling me to take care.
9. The PD nurse comes back in and checks the instructions and we book an appointment for 6 months down the road. She hands me a bag with any supplies I've requested that Baxter doesn't supply, and I leave.
The whole appointment takes about an hour. I'm not a non-compliant patient, but I believe very much in being the one in control. I know what my lab values should be and what they all mean. I am not hesitant in saying no to medication. I do not lie to my doctor, but I am the one living with this. He can understand to a point, but he would also like to see me with a transplant. To me, right now, a transplant doesn't make sense. Or rather, the benefits do not outweigh the risks. When I get to that point, then I will move forward with a transplant, but I'm not there yet.
I think that'll be a good future topic: the benefits of PD versus hemodialysis and transplant.
Any questions or comments, feel free!
RachelT
2013-05-28
The Kidney Doc
My Nephrologist.
The man with the plan.
My insurance requires me to see him once a month. Our visits are usually short and sweet. He oversees my PD care and is the person who coordinated my initial foray into dialysis.
When someone is diagnosed with kidney failure, there are often other, related issues to deal with. Maybe depression, poor appetite, fatigue, blood pressure control issues. Any number of things can become problems. The Nephrologist will help you with many of these things. A PD clinic nurse is usually a direct line to a Nephrologist, so there are a couple of ways to get help if needed.
One thing that really matters to me about my Nephrologist is that he is compassionate. He may not have personal experience with being a PD patient, but if his goal is to help me live as well as I can, then we are on the same page. I need someone who looks at me when I talk. And hears exactly what I am saying. Someone who will take a moment to come up with a solution to a problem. Someone who wants the best for me.
My Nephrologist is also willing to compromise with me regarding my care and treatment. He doesn't rush to judgement about changing medications or dosage when I tell him I might want to try adjusting things with diet. He's willing to let me have some control.
Today was my appointment with the kidney doc. Here's what happened:
Checked in at 9:35AM. Nurse took readings on my weight, blood pressure, temperature and pulse. Asked if there were any treatment changes. There were none.
Doc met with me at 9:45AM. Listened to my heart, checked my ankles for any water retention. Asked some general health questions. We talked about my PD schedule and prescription. I told him I had increased the amount of water I was drinking and that my cycler machine was particularly efficient because of this. PD was going well. He was happy with my weight and blood pressure. We talked about the needed increase in protein for my diet.
Today there were no major concerns. In the past, if I had a problem with the function of my cycler machine or was worried about my diet, he would address these issues. We would talk about possible solutions.
He said he was happy with how things were looking and said to call if anything came up before I see him again. And that was it.
His office is responsive to telephone calls. I might need to clarify a prescription or ask about changing a dosage. He reviews my medication schedule and does what needs to be done.
My Nephrologist is also the person who helps coordinate any hospitalizations related to kidney issues. Before I actually started on PD, I was hospitalized a couple of times. He was there to confer with hospital staff about my case.
This is the doctor who will oversee your PD plan. It's important that you are comfortable asking questions and getting information. PD is all about self-care. Having someone who gives you the tools you need to do PD and then supports you as you go along is critical. Don't be afraid to ask anything and everything. The longer I have done PD, the more I learn about what I need and what I want. Having a Nephrologist in my corner to keep me going is one less thing to worry about.
Since my Nephrologist and I spend a lot of time talking about labs, it's probably time to start explaining some of that. Next post!
Questions? Please ask!
- Rachael M.
The man with the plan.
My insurance requires me to see him once a month. Our visits are usually short and sweet. He oversees my PD care and is the person who coordinated my initial foray into dialysis.
When someone is diagnosed with kidney failure, there are often other, related issues to deal with. Maybe depression, poor appetite, fatigue, blood pressure control issues. Any number of things can become problems. The Nephrologist will help you with many of these things. A PD clinic nurse is usually a direct line to a Nephrologist, so there are a couple of ways to get help if needed.
One thing that really matters to me about my Nephrologist is that he is compassionate. He may not have personal experience with being a PD patient, but if his goal is to help me live as well as I can, then we are on the same page. I need someone who looks at me when I talk. And hears exactly what I am saying. Someone who will take a moment to come up with a solution to a problem. Someone who wants the best for me.
My Nephrologist is also willing to compromise with me regarding my care and treatment. He doesn't rush to judgement about changing medications or dosage when I tell him I might want to try adjusting things with diet. He's willing to let me have some control.
Today was my appointment with the kidney doc. Here's what happened:
Checked in at 9:35AM. Nurse took readings on my weight, blood pressure, temperature and pulse. Asked if there were any treatment changes. There were none.
Doc met with me at 9:45AM. Listened to my heart, checked my ankles for any water retention. Asked some general health questions. We talked about my PD schedule and prescription. I told him I had increased the amount of water I was drinking and that my cycler machine was particularly efficient because of this. PD was going well. He was happy with my weight and blood pressure. We talked about the needed increase in protein for my diet.
Today there were no major concerns. In the past, if I had a problem with the function of my cycler machine or was worried about my diet, he would address these issues. We would talk about possible solutions.
He said he was happy with how things were looking and said to call if anything came up before I see him again. And that was it.
His office is responsive to telephone calls. I might need to clarify a prescription or ask about changing a dosage. He reviews my medication schedule and does what needs to be done.
My Nephrologist is also the person who helps coordinate any hospitalizations related to kidney issues. Before I actually started on PD, I was hospitalized a couple of times. He was there to confer with hospital staff about my case.
This is the doctor who will oversee your PD plan. It's important that you are comfortable asking questions and getting information. PD is all about self-care. Having someone who gives you the tools you need to do PD and then supports you as you go along is critical. Don't be afraid to ask anything and everything. The longer I have done PD, the more I learn about what I need and what I want. Having a Nephrologist in my corner to keep me going is one less thing to worry about.
Since my Nephrologist and I spend a lot of time talking about labs, it's probably time to start explaining some of that. Next post!
Questions? Please ask!
- Rachael M.
2013-05-25
TFD
This Fucking Disease (hereafter referred to as TFD so people don't think I curse like a sailor).
Normally I deal with all this kidney stuff pretty calmly. I doesn't really bother me to be on dialysis and to make choices based on the good of my health. People should do that anyway.
However, sometimes it just really gets to me. Like on Friday. I picked up a part-time job for over the summer as I'm not teaching until at least the end of June, if not longer. Friday was the orientation for the new store opening. OF COURSE after standing under the hot lights, my blood pressure dropped. I felt nauseated, overheated, and lightheaded. Crap. When I'm moving around, I'm fine. As soon as I have to stand still, especially when it's hot and crowded, then I don't do so well. I ended up having to leave after the first hour of orientation. Fortunately the manager was fantastic and modified my future shifts (about 2/week), so I'm only doing 3-4 hours. She said I won't have to stand at the till, or if I do, it won't be for long periods of time.
A lot of dialysis patients don't work because they are generally too unwell to work and those who do hemodialysis have fairly low energy. PD patients usually feel a lot healthier than hemo patients because it's done more often and is gentler on the body.
While I was on hemodialysis, I was working as a unit clerk in a busy unit in the hospital here. I switched to PD 9 months after starting on hemodialysis. Four years later I moved over to teaching ESL and I worked 5-6 hours a day. That was the perfect schedule for me because I could nap in the afternoon after work if I felt run down. I have a pretty high energy level compared to a lot of dialysis patients, but I know it still affects me.
Anyway, Friday made me feel like TFD was a little frustrating. And I want to let you know that days like that will happen. You will get frustrated. You will feel like your body has betrayed or is betraying you. You will wonder how you're going to make it through each day.
I don't have the perfect answer because that is something you will have to define for yourself. For me, it is work. I love my students, I love being around people. My friends and my family are important to me. I like to travel - even if I have limited myself to road trips. I love to learn and am always pursuing further education.
I think I have a purpose to help other people - to learn, to adapt, to encourage them in some way.
I hope you find your answers when you have a TFD day. I hope that this blog will help you and that you will see that you are not alone on your journey!
RT
Normally I deal with all this kidney stuff pretty calmly. I doesn't really bother me to be on dialysis and to make choices based on the good of my health. People should do that anyway.
However, sometimes it just really gets to me. Like on Friday. I picked up a part-time job for over the summer as I'm not teaching until at least the end of June, if not longer. Friday was the orientation for the new store opening. OF COURSE after standing under the hot lights, my blood pressure dropped. I felt nauseated, overheated, and lightheaded. Crap. When I'm moving around, I'm fine. As soon as I have to stand still, especially when it's hot and crowded, then I don't do so well. I ended up having to leave after the first hour of orientation. Fortunately the manager was fantastic and modified my future shifts (about 2/week), so I'm only doing 3-4 hours. She said I won't have to stand at the till, or if I do, it won't be for long periods of time.
A lot of dialysis patients don't work because they are generally too unwell to work and those who do hemodialysis have fairly low energy. PD patients usually feel a lot healthier than hemo patients because it's done more often and is gentler on the body.
While I was on hemodialysis, I was working as a unit clerk in a busy unit in the hospital here. I switched to PD 9 months after starting on hemodialysis. Four years later I moved over to teaching ESL and I worked 5-6 hours a day. That was the perfect schedule for me because I could nap in the afternoon after work if I felt run down. I have a pretty high energy level compared to a lot of dialysis patients, but I know it still affects me.
Anyway, Friday made me feel like TFD was a little frustrating. And I want to let you know that days like that will happen. You will get frustrated. You will feel like your body has betrayed or is betraying you. You will wonder how you're going to make it through each day.
I don't have the perfect answer because that is something you will have to define for yourself. For me, it is work. I love my students, I love being around people. My friends and my family are important to me. I like to travel - even if I have limited myself to road trips. I love to learn and am always pursuing further education.
I think I have a purpose to help other people - to learn, to adapt, to encourage them in some way.
I hope you find your answers when you have a TFD day. I hope that this blog will help you and that you will see that you are not alone on your journey!
RT
2013-05-23
Today's Clinic Visit
Before I tell you all about today's visit to the PD clinic, I want to make sure our readers understand some differences between my posts and Rachel's posts. I live in the US. Rachel lives in Canada. Because of the different types of insurance we have in our respective countries, our procedures will not be the same. What I have to do will not always be the same as what Rachel has to do. My US insurance requires certain things in order to comply with Medicare. The frequency of clinic visits, the lab-drawing schedule, the nephrology appointments and other specifics will probably be different. But the basics and what actually happens during these procedures will be similar.
Just like any two people who do PD, our stories will have similarities, but won't be exactly the same. What we hope to show you are examples of how it works for each of us. And to let you know that your experience might not be just like ours - but you'll have a better idea of what to expect.
On with the post!
Today was what I call a Regular Clinic Visit. Once a month, I go to the DaVita Dialysis Clinic in town. On a regular visit, the basics are covered. A blood draw, a short educational segment (a quiz or a demonstration), review of the previous month's labs, medication review, and an assessment of my general health. I will be asked if I have any problems or concerns.
Every three months I have what I call a Big Clinic Visit. During a big visit, I will bring in a sample of the dialysis drain fluid and a sample of my urine. More tests will be done to determine whether my dialysis prescription (fluid strength, amount, and frequency) is adequate to keep me healthy. Every six months is the Really Big Clinic Visit. During that visit, I will have my catheter tubing changed and will meet with the dietician and social worker to discuss any issues I may be having.
Today's regular visit was quick and easy. Here is an overview:
1. Arrive at clinic at 1:30pm. Step on scale, record weight. Go with PD nurse into clinic office.
2. Clinic office has a reclining chair, sink, various supplies, IV poles, and pretty much everything associated with PD. There is a cycler machine set up in there that is used for training purposes. Reclining chair has been wiped down with sanitizer and covered with clean paper. It's actually pretty comfy.
2. PD nurse takes my temperature, blood pressure, and pulse. Then she listens to my heart - front and back. Regular breaths and deep breaths. I give her a copy of the records I keep every day. (Each morning, I record data from the cycler and information such as my blood pressure and weight. I note how much fluid was removed during the night, how long the average cycle was, and how much fluid drained initially when I first connected. The PD nurse collects this every month and I keep records every single day.)
3. PD nurse reviews last month's labs. Addresses any concerns. Today she advised me to increase the amount of protein in my diet. PD patients lose protein faster than non-PD folks because we are always pulling the good with the bad from our bodies with dialysis. We discussed my medications (no changes). We went over my general health, making sure I wasn't showing signs of not getting enough dialysis. If my dialysis was not sufficient, I would possibly have itchy skin, signs of swelling and water retention. I don't, so everything was fine.
4. We do a short educational segment. She tells me the latest information about a topic related to PD. Today it was about travel. I learned what I needed to do in order to travel on PD - what the new requirements are regarding making sure my supplies get to where I'm going. Then I took a little quiz about it.
5. PD nurse showed me pictures of her daughter's graduation. We oohed and aahed about them for a while. I have had the same PD nurse for about 7 years, so we know a bit about each other and our families.
6. I was reclined in the chair and the PD nurse took some blood from my right arm. This will be used to check various lab levels. I think we (Rachel and I) will post in more detail about labs at another time. But they're used to see if our medications need adjusting or if our diets are negatively affecting our health.
7. The PD nurse and I walked into her administrative office and we scheduled an appointment for next month. Next month is another Regular Clinic Visit.
8. She gave me a hug and I left the clinic at about 2pm.
So, the whole appointment took about half an hour. We covered everything we needed to cover and had a few minutes to catch up on personal stuff. The office is friendly, clean, and private. There are no other PD patients in the room with me during my appointment. It is one-on-one with the PD nurse. She hands me a few supplies when I leave. Things like hand sanitizer, syringes, record-keeping forms. Whatever I might need.
And that's it. Until next month!
Again, what is required by my insurance in the US isn't the same as in Canada. So, that's my particular experience with a regular visit to the PD clinic. Questions? Ask away!
- Rachael M.
Just like any two people who do PD, our stories will have similarities, but won't be exactly the same. What we hope to show you are examples of how it works for each of us. And to let you know that your experience might not be just like ours - but you'll have a better idea of what to expect.
On with the post!
Today was what I call a Regular Clinic Visit. Once a month, I go to the DaVita Dialysis Clinic in town. On a regular visit, the basics are covered. A blood draw, a short educational segment (a quiz or a demonstration), review of the previous month's labs, medication review, and an assessment of my general health. I will be asked if I have any problems or concerns.
Every three months I have what I call a Big Clinic Visit. During a big visit, I will bring in a sample of the dialysis drain fluid and a sample of my urine. More tests will be done to determine whether my dialysis prescription (fluid strength, amount, and frequency) is adequate to keep me healthy. Every six months is the Really Big Clinic Visit. During that visit, I will have my catheter tubing changed and will meet with the dietician and social worker to discuss any issues I may be having.
Today's regular visit was quick and easy. Here is an overview:
1. Arrive at clinic at 1:30pm. Step on scale, record weight. Go with PD nurse into clinic office.
2. Clinic office has a reclining chair, sink, various supplies, IV poles, and pretty much everything associated with PD. There is a cycler machine set up in there that is used for training purposes. Reclining chair has been wiped down with sanitizer and covered with clean paper. It's actually pretty comfy.
2. PD nurse takes my temperature, blood pressure, and pulse. Then she listens to my heart - front and back. Regular breaths and deep breaths. I give her a copy of the records I keep every day. (Each morning, I record data from the cycler and information such as my blood pressure and weight. I note how much fluid was removed during the night, how long the average cycle was, and how much fluid drained initially when I first connected. The PD nurse collects this every month and I keep records every single day.)
3. PD nurse reviews last month's labs. Addresses any concerns. Today she advised me to increase the amount of protein in my diet. PD patients lose protein faster than non-PD folks because we are always pulling the good with the bad from our bodies with dialysis. We discussed my medications (no changes). We went over my general health, making sure I wasn't showing signs of not getting enough dialysis. If my dialysis was not sufficient, I would possibly have itchy skin, signs of swelling and water retention. I don't, so everything was fine.
4. We do a short educational segment. She tells me the latest information about a topic related to PD. Today it was about travel. I learned what I needed to do in order to travel on PD - what the new requirements are regarding making sure my supplies get to where I'm going. Then I took a little quiz about it.
5. PD nurse showed me pictures of her daughter's graduation. We oohed and aahed about them for a while. I have had the same PD nurse for about 7 years, so we know a bit about each other and our families.
6. I was reclined in the chair and the PD nurse took some blood from my right arm. This will be used to check various lab levels. I think we (Rachel and I) will post in more detail about labs at another time. But they're used to see if our medications need adjusting or if our diets are negatively affecting our health.
7. The PD nurse and I walked into her administrative office and we scheduled an appointment for next month. Next month is another Regular Clinic Visit.
8. She gave me a hug and I left the clinic at about 2pm.
So, the whole appointment took about half an hour. We covered everything we needed to cover and had a few minutes to catch up on personal stuff. The office is friendly, clean, and private. There are no other PD patients in the room with me during my appointment. It is one-on-one with the PD nurse. She hands me a few supplies when I leave. Things like hand sanitizer, syringes, record-keeping forms. Whatever I might need.
And that's it. Until next month!
Again, what is required by my insurance in the US isn't the same as in Canada. So, that's my particular experience with a regular visit to the PD clinic. Questions? Ask away!
- Rachael M.
Travel
First up, I want to concur with what Rachael said about supplies. It takes some doing to get yourself organized, but once you work it out, it's easy. I live in a 3-bedroom house, so one bedroom is for supplies and storage. I keep one month of supplies on hand, although this is a recent development for me. For some reason, Baxter kept sending me WAY too many supplies, so I finally did a proper count and have brought my ordering under control.
Now to the purpose of this post: travel. Travelling while on dialysis SUCKS. I will be upfront and honest about that. Now, Baxter does its best to make travelling easy. They will deliver your solutions for you (and in Canada it doesn't cost anything, even if you travel internationally), but you have to carry your cassettes, drain bags, and other paraphernalia with you. I wish Baxter would also supply this material, but as of right now they don't. I'm not sure why.
The biggest problem is the machine. It's heavy and awkward. A dialysis patient is not supposed to lift anything over 10-15 pounds. The machine weighs something like 35 pounds. Something doesn't add up. I have made several (ok, many) complaints to Baxter about this. With all the technology out there, you'd think a lighter, more portable machine would have been developed by now. It has not.
If the machine weren't so unwieldy, I would definitely travel internationally. However, over the past 8 years I have limited myself to road trips because they are easier. I can load my machine and supplies for a few days into my car and go. I just spent 4 days in Edmonton and had my supplies delivered. That was so handy! The boxes of supplies aren't light either, so whenever you can save yourself carrying that extra weight, do.
Baxter (or your dialysis provider) does need advance notice that you are travelling so they can arrange for shipment of your supplies. They recommend 2-3 weeks for domestic travel and 3-6 months for international travel. You will need all addresses, phone numbers, and contact information of where you're staying and who they're delivering to.
Depending on your health, your clinic may need to be aware too. I recommend travelling with a list of all your medications and if you're crossing the border, a note from your doctor saying that the supplies in your vehicle are necessary for your life. I haven't had any problems with border crossings, but better to be safe than have some over-eager border guard slitting open your dialysis bags and draining them onto the ground.
The thought of that makes me shudder!
The idea of making my way through an airport with my dialysis machine fills me with a little bit of horror. There is also the issue of setting up hotel stays and having supplies delivered to hotels. They often aren't aware of what to do with the supplies and every time I've stayed in a hotel and made special requests, they've gotten it wrong. That is frustrating. It definitely makes you feel like a person with a disability when snafu's like that happen.
My biggest problem with travel is me. I hate to feel like I'm imposing on people. I need to have space for my supplies and for my machine. I also don't want people to feel sorry for me. After all, it is this machine that keeps me alive and well. I understand that it's my issue and it's something I'm trying to get over. Not easy.
This is a great blog about a guy who travelled Europe while on dialysis: http://travellingwithdialysis.wordpress.com/ Give it a read and you'll see that yes, travel is possible. It just takes thought and preparation and a positive attitude!
RT
Now to the purpose of this post: travel. Travelling while on dialysis SUCKS. I will be upfront and honest about that. Now, Baxter does its best to make travelling easy. They will deliver your solutions for you (and in Canada it doesn't cost anything, even if you travel internationally), but you have to carry your cassettes, drain bags, and other paraphernalia with you. I wish Baxter would also supply this material, but as of right now they don't. I'm not sure why.
The biggest problem is the machine. It's heavy and awkward. A dialysis patient is not supposed to lift anything over 10-15 pounds. The machine weighs something like 35 pounds. Something doesn't add up. I have made several (ok, many) complaints to Baxter about this. With all the technology out there, you'd think a lighter, more portable machine would have been developed by now. It has not.
If the machine weren't so unwieldy, I would definitely travel internationally. However, over the past 8 years I have limited myself to road trips because they are easier. I can load my machine and supplies for a few days into my car and go. I just spent 4 days in Edmonton and had my supplies delivered. That was so handy! The boxes of supplies aren't light either, so whenever you can save yourself carrying that extra weight, do.
Baxter (or your dialysis provider) does need advance notice that you are travelling so they can arrange for shipment of your supplies. They recommend 2-3 weeks for domestic travel and 3-6 months for international travel. You will need all addresses, phone numbers, and contact information of where you're staying and who they're delivering to.
Depending on your health, your clinic may need to be aware too. I recommend travelling with a list of all your medications and if you're crossing the border, a note from your doctor saying that the supplies in your vehicle are necessary for your life. I haven't had any problems with border crossings, but better to be safe than have some over-eager border guard slitting open your dialysis bags and draining them onto the ground.
The thought of that makes me shudder!
The idea of making my way through an airport with my dialysis machine fills me with a little bit of horror. There is also the issue of setting up hotel stays and having supplies delivered to hotels. They often aren't aware of what to do with the supplies and every time I've stayed in a hotel and made special requests, they've gotten it wrong. That is frustrating. It definitely makes you feel like a person with a disability when snafu's like that happen.
My biggest problem with travel is me. I hate to feel like I'm imposing on people. I need to have space for my supplies and for my machine. I also don't want people to feel sorry for me. After all, it is this machine that keeps me alive and well. I understand that it's my issue and it's something I'm trying to get over. Not easy.
This is a great blog about a guy who travelled Europe while on dialysis: http://travellingwithdialysis.wordpress.com/ Give it a read and you'll see that yes, travel is possible. It just takes thought and preparation and a positive attitude!
RT
2013-05-21
So. Much. Stuff.
As an independent PD patient, I need to have plenty of supplies at home to keep the dialysis going. I get a delivery once a month of all the supplies I need, plus a few extra in case of emergency.
Whether it's manual exchanges or using the cycler, PD requires bags of dialysis solutions. I store a month's worth of solution in my home, along with all the other necessary supplies.
30+ boxes of solution are wedged into a bedroom closet. I have a few large boxes of the cassettes that the cycler uses and a couple of boxes of drain bags. (Some cycler users drain their solution right into a tub or toilet, some use a drain bag to collect it and then dump it out.) The boxes of cassettes and drain bags are stacked in the corner of the same bedroom. There are a few boxes of manual exchange solutions tucked into a hall closet. I keep them on hand in case of a power outage or emergency where I would have to do manual exchanges instead of cycler exchanges.
Then there are all the smaller supplies. I have a three-drawer rolling cart that is filled with gauze, tape, plastic clamps, minicaps for my catheter, flexicaps for temporary disconnects from the cycler, syringes for adding medication to the solution bags if necessary, paperwork for keeping records of my exchanges, hand sanitizer, and any other items I might need.
Staying organized helps me track what I need to order each month. And makes things feel less cluttered. It's an unavoidable issue, finding room for all this stuff. At first it can seem a little overwhelming. But as each month progresses, the supplies dwindle and a couple weeks before the next delivery you will be counting up what you have to restock it all again. If you can find room for all of the supplies, you will be just fine. It's important for me, living in a very hot part of the US, to make sure I have a temperature-controlled storage area. I have found that one average-sized bedroom closet works very well for me.
The company that delivers the boxes of solution and supplies (Baxter) sends a delivery person to stack the supplies wherever you would like them. Often they will offer to rotate the boxes so the solutions that expire sooner are more easily reached - to use them first. The delivery of supplies takes about 20 to 30 minutes. A very large truck backs into my driveway and the delivery person uses a dolly to bring several boxes at a time into my home.
When I went to one of my first training sessions to learn about PD, it sounded so much more complicated than it really is. The clinic director made it seem like I would need an entire room for supplies and that I practically needed to make it a "clean room" with full sterilization and no pets. I got the feeling that they were trying to scare me. In fact, after one of the first information sessions about PD, I was pretty much ready to NOT do PD. It seemed too intimidating and seemed like it would really interrupt my regular style of living. This was not the case.
Finding room for all the stuff associated with PD wasn't really a challenge. It mostly fit into a closet and I didn't have to change my lifestyle or my methods of housekeeping. Just tuck them away wherever they fit and where you can easily access them. You get used to having a lot of boxes and stuff in the house because it's worth the trade-off of not going to a hemodialysis clinic. Everything you need is at home and ready for you to use on your schedule.
Yes, a month's worth of PD supplies at a time can seem like a lot of "stuff" in your home. But making sure I have room for it keeps me on my toes for finding ways to eliminate clutter and stay organized. Which is a good thing. Take a look around and see if you have a room or a closet or a few areas where boxes and supplies can be stored. Preparing for all the "stuff" is a good way to clean house of unwanted or unnecessary things!
- Rachael M.
Whether it's manual exchanges or using the cycler, PD requires bags of dialysis solutions. I store a month's worth of solution in my home, along with all the other necessary supplies.
30+ boxes of solution are wedged into a bedroom closet. I have a few large boxes of the cassettes that the cycler uses and a couple of boxes of drain bags. (Some cycler users drain their solution right into a tub or toilet, some use a drain bag to collect it and then dump it out.) The boxes of cassettes and drain bags are stacked in the corner of the same bedroom. There are a few boxes of manual exchange solutions tucked into a hall closet. I keep them on hand in case of a power outage or emergency where I would have to do manual exchanges instead of cycler exchanges.
Then there are all the smaller supplies. I have a three-drawer rolling cart that is filled with gauze, tape, plastic clamps, minicaps for my catheter, flexicaps for temporary disconnects from the cycler, syringes for adding medication to the solution bags if necessary, paperwork for keeping records of my exchanges, hand sanitizer, and any other items I might need.
Staying organized helps me track what I need to order each month. And makes things feel less cluttered. It's an unavoidable issue, finding room for all this stuff. At first it can seem a little overwhelming. But as each month progresses, the supplies dwindle and a couple weeks before the next delivery you will be counting up what you have to restock it all again. If you can find room for all of the supplies, you will be just fine. It's important for me, living in a very hot part of the US, to make sure I have a temperature-controlled storage area. I have found that one average-sized bedroom closet works very well for me.
The company that delivers the boxes of solution and supplies (Baxter) sends a delivery person to stack the supplies wherever you would like them. Often they will offer to rotate the boxes so the solutions that expire sooner are more easily reached - to use them first. The delivery of supplies takes about 20 to 30 minutes. A very large truck backs into my driveway and the delivery person uses a dolly to bring several boxes at a time into my home.
When I went to one of my first training sessions to learn about PD, it sounded so much more complicated than it really is. The clinic director made it seem like I would need an entire room for supplies and that I practically needed to make it a "clean room" with full sterilization and no pets. I got the feeling that they were trying to scare me. In fact, after one of the first information sessions about PD, I was pretty much ready to NOT do PD. It seemed too intimidating and seemed like it would really interrupt my regular style of living. This was not the case.
Finding room for all the stuff associated with PD wasn't really a challenge. It mostly fit into a closet and I didn't have to change my lifestyle or my methods of housekeeping. Just tuck them away wherever they fit and where you can easily access them. You get used to having a lot of boxes and stuff in the house because it's worth the trade-off of not going to a hemodialysis clinic. Everything you need is at home and ready for you to use on your schedule.
Yes, a month's worth of PD supplies at a time can seem like a lot of "stuff" in your home. But making sure I have room for it keeps me on my toes for finding ways to eliminate clutter and stay organized. Which is a good thing. Take a look around and see if you have a room or a closet or a few areas where boxes and supplies can be stored. Preparing for all the "stuff" is a good way to clean house of unwanted or unnecessary things!
- Rachael M.
2013-05-19
Don't Give Up
I've had this story in my head for a long time and it always seems to resonate with me. Now that we are blogging, it seems like a good time to share it.
A woman in my town was told by her doctor that she might have cancer. She was advised to see a specialist and get a second opinion and to have all the necessary tests done. The woman chose not to do so. She took the word of the doctor and came to terms with the fact that she had cancer.
But she didn't have cancer.
She spent a year at home, in bed, bemoaning the end of her life. She stopped taking care of herself. Her teeth fell out from lack of care. Her body wasted. She spent a year swirling in a deepening depression and waiting to die.
At one point, her family intervened and took her to an oncologist. After tests were conducted, the oncologist told her that she did not have cancer. And that she should have sought that second opinion immediately after cancer was suspected.
The point of all this is that it is up to you to decide what you do with scary news. Hearing that you have kidney failure is scary. It changes everything. But you don't have to let it encompass all you do and all you are. Making the decision to let an illness take over your life wastes precious time and precious living. While you might need some time to grieve for your former, healthier self, don't give up on who you are. Live. Really live. If you can set yourself on a course to tackle your dialysis issues and stay true to who you are, you are ahead of the game.
Life doesn't have to pass you by because of a health issue. You are still you. And often, if you find the strength and courage to accept the changes, you end up a better version of yourself. Because regardless of what may seem like a limitation, you continue to live.
- Rachael M.
A woman in my town was told by her doctor that she might have cancer. She was advised to see a specialist and get a second opinion and to have all the necessary tests done. The woman chose not to do so. She took the word of the doctor and came to terms with the fact that she had cancer.
But she didn't have cancer.
She spent a year at home, in bed, bemoaning the end of her life. She stopped taking care of herself. Her teeth fell out from lack of care. Her body wasted. She spent a year swirling in a deepening depression and waiting to die.
At one point, her family intervened and took her to an oncologist. After tests were conducted, the oncologist told her that she did not have cancer. And that she should have sought that second opinion immediately after cancer was suspected.
The point of all this is that it is up to you to decide what you do with scary news. Hearing that you have kidney failure is scary. It changes everything. But you don't have to let it encompass all you do and all you are. Making the decision to let an illness take over your life wastes precious time and precious living. While you might need some time to grieve for your former, healthier self, don't give up on who you are. Live. Really live. If you can set yourself on a course to tackle your dialysis issues and stay true to who you are, you are ahead of the game.
Life doesn't have to pass you by because of a health issue. You are still you. And often, if you find the strength and courage to accept the changes, you end up a better version of yourself. Because regardless of what may seem like a limitation, you continue to live.
- Rachael M.
2013-05-18
Picture post
I'm headed to Edmonton for a few days (hellloooooo Mumford & Sons!! and Mom!), so I figured I'd better post a couple of pictures before I'm in absentia!
This is my machine and bags pre-setup. I put the cassette on top of the bag that's warming so that the cassette gets a little warmed up, too.
This is my machine and bags pre-setup. I put the cassette on top of the bag that's warming so that the cassette gets a little warmed up, too.
This is the cycler starting it's priming cycle - it'll be ready for me to hook up to in about 15 minutes.
Oops, this one is a little blurry. Anyway, you can maybe see that the cycler is the same height as my bed - that makes for easier filling and draining. I think I went through 4 or 5 different types of shelves, etc. before settling on this one. It's the right height, plus it can double as a bookcase. :) I modified a TV stand to make it work.
You'll also notice the bottle of hand sanitizer to the left of the picture. This is ALL I use when I set up. I do not mask or glove up - your dialysis nurses will probably tell you to. I know that the Baxter manual also tells you to do that. When you first start on PD and your exit site is healing, it's probably a good idea, but I have been on PD long enough that 1-my exit site is closed, and 2-the dressing I wear over my catheter covers it up so no bugs are crawling in. :) I was paranoid at first and I still take VERY GOOD care of my exit site, but the paranoia wears off pretty fast and once you're adept at hooking up, you'll do it pretty quickly. I can hook and unhook half asleep, in the dark, and not make any mistakes (eg. touching the open catheter to my skin - a huge no-no to dialysis nurses everywhere).
Hopefully this gives you a better picture (haha) and if there's anything you want to see or hear about, let us know!
RT
2013-05-17
What Do You Do?
Rachael M. here. PD is one of those unusual things that people might not even know about unless it becomes a part of their lives. When I tell someone that I do dialysis, they immediately think of hemodialysis and the machines that clean blood. PD is my chosen dialysis format, and I don't mind telling people about it because it usually surprises them. I have so much more personal freedom with PD.
If this is all new to you, let me try to explain a little bit about it. A surgeon places a catheter in your abdomen. It extends from the abdominal cavity to outside your body. The outer catheter is a short tube with a plastic connection mechanism. That catheter is used to fill the abdominal cavity with solution that works with the principal of osmosis to draw out the toxins from the body. Since the kidneys aren't functioning, this process will pull the toxins out through the peritoneum (the membranes that make up the wall of the abdominal cavity) and then flush them out of the body.
PD can be done manually with a bag of solution hanging from an IV pole. Some people do several manual exchanges each day and then sleep at night with dialysis solution in their body, draining that in the morning. Some people use a cycler machine to conduct all the dialysis exchanges while sleeping. This leaves the day completely free of dialysis exchanges and allows a person to do whatever they would normally do during the day without the thought of dialysis. When I started on PD, I did manual exchanges for a few months and then switched to the cycler.
After my acute kidney failure, I had a neck catheter placed for hemodialysis. I went to the hemo clinic for a couple months and decided that it was not for me. I had the PD catheter surgery and started on PD as soon as it was possible.
The various strengths of solutions and the number of exchanges needed really depends on each individual patient. Some people are still able to urinate, meaning that they might need less dialysis to do the work for their kidneys. Some people have very little kidney function and need dialysis to do almost all of the work. I can tell you what my system is, but remember that everyone is different and a Nephrologist (kidney specialist) will help figure out exactly what works for each patient.
I use the automated dialysis machine called the cycler. This does four cycles of dialysis while I sleep. I connect my catheter to the tubing of the machine and set up bags of solution to fill and drain from my body during the night. I use two six-liter bags of solution with a 2.5% strength of dialysate. I fill with 2500 ml. of solution for each cycle, then drain it out. For the last fill of the evening (the one that will stay in my body all day), I fill with 800ml of solution. Depending on my schedule, I might set the machine to do all of this in 7 hours, 8 hours, or even 9 hours. This flexibility is so important and allows me to fit the dialysis into my schedule - the dialysis does not become the focus of my schedule. It doesn't dictate my life and my activities.
If this is all completely new to you, this probably sounds like a bunch of very confusing information. But if you are looking into PD as an option for you, the more you read about it, the more this will make sense.
Essentially, I connect to a machine that warms the solution and does all the work of dialysis for me while I sleep. Then I wake up the next day and do whatever it is that I do and don't think about my need for dialysis. This is a HUGE advantage over going to a hemodialysis clinic three times a week for up to four hours per session. And later on in this blog, I will give you my personal experience with hemodialysis and explain why it just was not right for me.
So, don't think that the idea of self-care with dialysis is scary. Or that you can't do it. Or that you're not able to figure it out. You can absolutely do this. The amazing thing that happens when you start PD is that you become extremely knowledgeable about your own body and your own needs. And protective of the system that helps you function. After doing PD for just a couple of months, I could not imagine letting someone else control my dialysis. It seemed wrong, somehow. I liked being able to limit the number of people who actually put their hands into the mix. It's empowering.
I'm sure Rachel and I will talk more about the specific details of all this and we'll add photos and things as we go. But ask any questions and we would be happy to clarify anything.
If this is all new to you, let me try to explain a little bit about it. A surgeon places a catheter in your abdomen. It extends from the abdominal cavity to outside your body. The outer catheter is a short tube with a plastic connection mechanism. That catheter is used to fill the abdominal cavity with solution that works with the principal of osmosis to draw out the toxins from the body. Since the kidneys aren't functioning, this process will pull the toxins out through the peritoneum (the membranes that make up the wall of the abdominal cavity) and then flush them out of the body.
PD can be done manually with a bag of solution hanging from an IV pole. Some people do several manual exchanges each day and then sleep at night with dialysis solution in their body, draining that in the morning. Some people use a cycler machine to conduct all the dialysis exchanges while sleeping. This leaves the day completely free of dialysis exchanges and allows a person to do whatever they would normally do during the day without the thought of dialysis. When I started on PD, I did manual exchanges for a few months and then switched to the cycler.
After my acute kidney failure, I had a neck catheter placed for hemodialysis. I went to the hemo clinic for a couple months and decided that it was not for me. I had the PD catheter surgery and started on PD as soon as it was possible.
The various strengths of solutions and the number of exchanges needed really depends on each individual patient. Some people are still able to urinate, meaning that they might need less dialysis to do the work for their kidneys. Some people have very little kidney function and need dialysis to do almost all of the work. I can tell you what my system is, but remember that everyone is different and a Nephrologist (kidney specialist) will help figure out exactly what works for each patient.
I use the automated dialysis machine called the cycler. This does four cycles of dialysis while I sleep. I connect my catheter to the tubing of the machine and set up bags of solution to fill and drain from my body during the night. I use two six-liter bags of solution with a 2.5% strength of dialysate. I fill with 2500 ml. of solution for each cycle, then drain it out. For the last fill of the evening (the one that will stay in my body all day), I fill with 800ml of solution. Depending on my schedule, I might set the machine to do all of this in 7 hours, 8 hours, or even 9 hours. This flexibility is so important and allows me to fit the dialysis into my schedule - the dialysis does not become the focus of my schedule. It doesn't dictate my life and my activities.
If this is all completely new to you, this probably sounds like a bunch of very confusing information. But if you are looking into PD as an option for you, the more you read about it, the more this will make sense.
Essentially, I connect to a machine that warms the solution and does all the work of dialysis for me while I sleep. Then I wake up the next day and do whatever it is that I do and don't think about my need for dialysis. This is a HUGE advantage over going to a hemodialysis clinic three times a week for up to four hours per session. And later on in this blog, I will give you my personal experience with hemodialysis and explain why it just was not right for me.
So, don't think that the idea of self-care with dialysis is scary. Or that you can't do it. Or that you're not able to figure it out. You can absolutely do this. The amazing thing that happens when you start PD is that you become extremely knowledgeable about your own body and your own needs. And protective of the system that helps you function. After doing PD for just a couple of months, I could not imagine letting someone else control my dialysis. It seemed wrong, somehow. I liked being able to limit the number of people who actually put their hands into the mix. It's empowering.
I'm sure Rachel and I will talk more about the specific details of all this and we'll add photos and things as we go. But ask any questions and we would be happy to clarify anything.
2013-05-14
Routine
This week we’re writing about the whole PD routine. I’ll
explain a bit about my routine today, then try and post pictures on Thursday or
Friday to tie it all together.
A long time ago I searched YouTube to see if anyone had
posted a video of their routine and I remember there being only one video. I
think that’s what got me thinking that there needed to be more information
available to PD users that WASN’T provided by the renal team that really had no
personal understanding of what dialysis was. Sure, they know from a nursing
standpoint, but not from personal experience.
One of my nurses, for example, didn’t listen to me when I
told her I wasn’t interested in hearing about the different therapies available
when I first started on dialysis. But she bull horned her way into my little
room and proceeded to go through EVERYTHING. Even after I told her I wasn’t
interested. At that point, I was not emotionally prepared to think, talk, or
learn about anything other than what I was doing. She only stopped when I
started sobbing and freaking out.
When I first started on dialysis, hemodialysis was my only
option because it was a bit of an emergency. I went into ICU with a blood pressure of
220/160 and creatine of 942. Hello End Stage Renal Failure. Hello, Dr. Wong.
And hello dialysis.
My routine is fairly basic. I try to get my machine set up
early in the day so I don’t have to think about doing it later on when I’m
tired at the end of the day. If I’m tired, then I’m tempted to skip the therapy
session. J
I don’t turn the machine on until an hour or so before I go to bed, but it’s all set up and ready to go. I can definitely see that a picture post is necessary. I know most of you are here because you understand what I’m talking about, but for those of you who have no idea what all this is about, it probably sounds like a bunch of mumbo jumbo! A picture post will help a lot!
I don’t turn the machine on until an hour or so before I go to bed, but it’s all set up and ready to go. I can definitely see that a picture post is necessary. I know most of you are here because you understand what I’m talking about, but for those of you who have no idea what all this is about, it probably sounds like a bunch of mumbo jumbo! A picture post will help a lot!
The supplies I use nightly: 1 5000L bag of 1.5% Dianeal
solution, 1 bag of 3000L 1.5% Dianeal, 1 bag of 7.5% Extraneal. 1 drain bag, 1
cassette, 1 opticap, and 1 minicap. All my supplies come from Baxter and I have
a very nice delivery driver named Dave. He’s been my delivery guy for 4-5 years
and I get a little upset when he goes on holidays and I have to deal with a
local driver. He sometimes talks too
much, but he doesn’t make my house dirty, use my bathroom, or ask for drinks of
water, snacks, etc. J
My therapy runs for 8 hours (I adjust it based on timing
(for example, I was out late or have to get up really early – most time I leave
it for 8 hours, of course, but sometimes I do 6 hours, other times 7). I
generally have a morning UF of 200 or less and I only have 200cc’s in during the
day. I could go dry, but it feels a little more comfortable if I have a little
something left over. In the morning I unhook everything and throw everything in
the garbage. I have A LOT of garbage!
After that I carry on with my day.
OK, this has gotten a little long. Next time I post, I will
write about drain pain, sleeping, etc. along with the pictures.
RT
RT
2013-05-12
comfort zone
This diagram perfectly represents how I feel about blogging--it's so out of my comfort zone!
But I also like the saying, "Life begins at the edge of your comfort zone." :)
-RT
But I also like the saying, "Life begins at the edge of your comfort zone." :)
-RT
2013-05-11
Welcome!
I'm Rachel T. the other half of Rachael & Rachel. :) I'm excited and nervous about starting this blog. Excited that I will be writing with my friend Rachael about our experiences on PD; nervous because of how much I'm going to share and how much I'm going to have to push myself out of my comfort zone in order to share.
A little bit about myself: right now I'm an ESL teacher. I live in southern Alberta, but grew up in Saskatchewan. I spent 6 years living and working in Tokyo, Japan. I love/enjoy reading, education, music, psychology, basketball, baseball, road trips, walking, and hanging out with friends & family. I am 39, but I would like to lie about my age, so please pretend I am 31. That will make me feel better. :)
I began my dialysis journey 8 years ago, 4 months after returning to Canada. In some ways I still think I'm in a bit of denial about actually being on dialysis, so the purpose of this blog is to write about the challenges, the highs and lows, the realities, and accepting it all and realizing that it doesn't make me any less of a whole person to have a chronic illness. PD was my choice after spending 9 months on hemodialysis and I wouldn't go back if you paid me. Well, maybe if you paid me A LOT. My goal here, though, is to be totally honest about whatever it is we write about.
I want to invite you on our journey of living well despite having as Rachael put it, "a major medical condition." If you have questions, ask. We will answer to the best of our ability. And if we don't know, we will find out. I hope I am able to convey to you LIFE and positivity and encouragement in the midst of trials. So from me to you, welcome! :)
A little bit about myself: right now I'm an ESL teacher. I live in southern Alberta, but grew up in Saskatchewan. I spent 6 years living and working in Tokyo, Japan. I love/enjoy reading, education, music, psychology, basketball, baseball, road trips, walking, and hanging out with friends & family. I am 39, but I would like to lie about my age, so please pretend I am 31. That will make me feel better. :)
I began my dialysis journey 8 years ago, 4 months after returning to Canada. In some ways I still think I'm in a bit of denial about actually being on dialysis, so the purpose of this blog is to write about the challenges, the highs and lows, the realities, and accepting it all and realizing that it doesn't make me any less of a whole person to have a chronic illness. PD was my choice after spending 9 months on hemodialysis and I wouldn't go back if you paid me. Well, maybe if you paid me A LOT. My goal here, though, is to be totally honest about whatever it is we write about.
I want to invite you on our journey of living well despite having as Rachael put it, "a major medical condition." If you have questions, ask. We will answer to the best of our ability. And if we don't know, we will find out. I hope I am able to convey to you LIFE and positivity and encouragement in the midst of trials. So from me to you, welcome! :)
Welcome!
My name is Rachael M. I am one half of the blogging duo of Rachael and Rachel. We share the experience of living with peritoneal dialysis and hope to give you insight into the challenges and successes of our stories.
I am 43 years old and I am many things. Wife. Friend. Sister. Problem-solver. Problem-creator. Cynic. Musician. Thinker. I am also a peritoneal dialysis (PD) patient. However, being a PD patient does not define me. It is simply one piece of the puzzle of who I am.
What I hope to express in this blog is that having a major medical issue does not alter the state of my being. It is something I have to deal with, but doesn't limit my potential as a fully-realized human being. Through shared experiences and stories from my personal journey on PD, I hope to make this clear.
I can tell you what I have gone through and what I have learned. The bottom line is that I am always still true to myself. PD didn't take over my life. It gave me a new perspective. I plan on sharing that perspective with you. My hope is that anyone who reads this will better understand the challenges and benefits of a life on peritoneal dialysis. There will be joys and there will be tears. I believe in the reader's right to the truth.
This will be a story of self-empowerment and freedom, living and living well on PD. I choose to live exactly the way I feel I should. I choose not to limit or define my life because of my medical condition. This is what I wish for anyone who is facing the same (or a similar) situation.
Thank you for reading. Ask any questions. Share your opinions. I will be open and honest and cover as many topics as possible to give you a better view from my perspective. I hope to address all facets of a life well-lived on PD. Welcome!
I am 43 years old and I am many things. Wife. Friend. Sister. Problem-solver. Problem-creator. Cynic. Musician. Thinker. I am also a peritoneal dialysis (PD) patient. However, being a PD patient does not define me. It is simply one piece of the puzzle of who I am.
What I hope to express in this blog is that having a major medical issue does not alter the state of my being. It is something I have to deal with, but doesn't limit my potential as a fully-realized human being. Through shared experiences and stories from my personal journey on PD, I hope to make this clear.
I can tell you what I have gone through and what I have learned. The bottom line is that I am always still true to myself. PD didn't take over my life. It gave me a new perspective. I plan on sharing that perspective with you. My hope is that anyone who reads this will better understand the challenges and benefits of a life on peritoneal dialysis. There will be joys and there will be tears. I believe in the reader's right to the truth.
This will be a story of self-empowerment and freedom, living and living well on PD. I choose to live exactly the way I feel I should. I choose not to limit or define my life because of my medical condition. This is what I wish for anyone who is facing the same (or a similar) situation.
Thank you for reading. Ask any questions. Share your opinions. I will be open and honest and cover as many topics as possible to give you a better view from my perspective. I hope to address all facets of a life well-lived on PD. Welcome!
Subscribe to:
Posts (Atom)