I was diagnosed with IgA Nephropathy at the age of 29. Until that time I had shown no symptoms, other than during my second pregnancy when my OB/GYN kept prescribing antibiotics for urinary tract infections because my specimens always showed too much protein. I was 23 at that time. Toward the end of my pregnancy she sent me to a urologist, who found nothing wrong. Soon after my daughter was born I had x-rays of my kidneys done that showed "scarring" in both kidneys. I was then sent to a Nephrologist, who told me that it was likely nothing to worry about.
Fast forward a few years. I started having palpitations a lot, so I went to the doctor and had testing done on my heart. It was at that time that I learned I had high blood pressure. They did lab work, and a week later, I learned that I had already lost 40% of my kidney function. They had no idea why.
So back to the Nephrologist I went. I had a biopsy which confirmed my diagnosis of IgA Nephropathy. My doctor told me in a phone call that there was nothing I could really do to stop the damage, other than controlling my blood pressure (which was high because of my lost kidney function) and limit the amount of protein I ate. So for 13 years I did that. I saw my kidney doctors every year, tried to take good care of myself, but all the while my kidneys were deteriorating. It was a slow process. So slow, in fact, that I barely noticed my energy level waning. It wasn't until years had passed and I looked back over all the ways my lifestyle had changed that I realized just how big a toll CKD had taken on me.
A little more than two years ago, I spoke to my Nephrologist on the phone at work. She told me my GFR (Glomerular Filtration Rate) was at 10%, and that I should start planning to begin dialysis within the next few months. That was in October. By May I was scheduled for surgery to have my Peritoneal Dialysis catheter placed. By that time I had quit a very physically demanding job for a desk job. I was spending my entire weekends on the couch, too tired to even do housework.
After I had been doing dialysis treatments for about three months, I started having bursts of energy like I hadn't had in years. Is this what it's like to be normal? I wondered.
I have no idea what any other woman at my age is able to accomplish in one day before collapsing into an exhausted lump of aches and pains on the sofa. I have no idea what it would be like to wake up feeling "normal" and I have no idea how close to normal I am, even with dialysis.
There are some days when I think I could take on the world, and other days when I think my couch might swallow me up. Do other people who aren't sick have days like that? How often do they have those world conquering days versus those being eaten by the couch days? Where do I fall on the scale of average women at 45?
I suppose in reality, we all, sick or well, have to determine what "normal" is for ourselves and learn to accept whatever that means. For me it means a very active week, Monday-Friday and a very, almost sinfully lazy weekend. It means turning down invitations from friends because I'm just too darned tired to get dressed. It means worrying that the things I need to do will not get done. It means I have to learn how to be okay with my own pace of completing tasks and managing my life. Most of all, it means I have to stop comparing myself to other people who have bodies that function like they're supposed to. I am not like them and they are not like me. I am doing the best I can, just as they most likely are.
I am proud of myself on days when I accomplish ten million things before noon. I guilt myself on days when I've done nothing before noon. Somewhere in there, I know I need to find balance, but when a person so rarely wakes up feeling energized and empowered to take on the day, it's hard to put the brakes on. You don't know when you'll get another "good" day again.
Normal. Who really knows what it is anyway? Maybe "normal" people don't even know?
I definitely know I'm not doing myself any favors by trying to keep up with them, and I'm discounting all the effort and strength it takes for me to function as well as I do considering the obstacles I face.
If you're struggling through ESRD, you are as normal as you can be. Accept that about yourself, be proud of yourself for keeping on keeping on. Those of us who are living thanks to the help of a machine, after all, are probably the exception to normal.
Tuesday, November 10, 2015
Saturday, October 24, 2015
Rest For the Weary?
Having a job and a family and a handy dandy dialysis cycler beside your bed can make for a demanding life. Even after having been on Peritoneal Dialysis for a little over two years, I find myself occasionally feeling overwhelmed with the unexpected challenges that seem to come from out of nowhere.
Like yesterday morning. I woke up to get ready for work when my alarm sounded at 6:30, disconnected myself from the machine, and stepped into my bathroom (which conveniently is about three steps away from the bed). Now, I stopped using drain bags a long time ago, probably three weeks into dialysis, when I figured out how much easier it was to run the drain tube into the toilet and just flush it in the morning. However, yesterday morning when my bare foot hit the bathroom rug, I stepped into a soggy, cold mess. At some point during the night, the tube somehow got pulled out of the toilet and the fluid that drained from my abdomen was pooled up on my bathroom floor. My clothes from the night before, left lying on the bathroom floor were saturated, the rug was saturated, and I had to use about 4 towels to sop up the rest of the mess. Thankfully, the tube wasn't lying on the floor all night, otherwise the folks living in the apartment beneath me would have suffered some rather unpleasant leakage through their bathroom ceiling. Lesson for the future: Tape that sucker to the toilet from now on.
It wasn't a great way to start the day, and coming home to a bathtub filled with dialysate soaked towels, clothes and rugs wasn't a picnic either. I found myself thinking, "Oh great! Something else to stress about."
I work part-time and I have a 9 year old son. I'm a single mom with no family that lives close by to help out, so yeah sometimes I get overwhelmed. Heck, I think I would get overwhelmed without PD in the mix. So when I have days when I'm beating myself up for forgetting to sign an important form for school, or for having dishes in the sink, or for not wanting to go out with friends on the weekend, I remind myself of all the "extra" stuff that has become a part of my life as a result of dialysis.
No one else that I know woke up to a bathroom flooded with bodily fluids yesterday. No other mom at my kid's school has to worry about throwing out 5 extra bags of garbage every week (and that's not including breaking down dialysis boxes and throwing them out). None of my co-workers have to wake up and disconnect themselves from a machine every morning, or plan their bed-time so precisely that they know they'll be able to be up and Adam on time the next morning. No other mom in my kid's school has ever made her kid late in the morning because her cycler (for some reason) took a little longer to finish its job and she had to lie still in bed until it finished because if she got up and started moving, the drain-pain would be excruciating.
At my last doctor appointment I bragged to my nephrologist (the ever-affable Dr. Tsai) that I am often amazed at my level of energy and the amount of "stuff" I can accomplish in one day. I think back to 3 years ago and remember how completely useless I would feel after a day at work, and I'm amazed that I can work, run errands, decorate for a party, buy groceries, pick up my kid, go for a walk and make dinner all in one day and still have enough energy to take a shower before I go to bed. Dr. Tsai never discourages me. He encourages me to stay active and reminds me that keeping my life relatively normal is the best thing for me; but he's also realistic. "That's great," he said with his kind smile, "you just need to make sure you're taking time to rest."
Rest? Really? I take my sleep medication at night and I usually get a good night's rest, but I don't exactly give myself permission to just spend a day taking it easy. If I do spend a Saturday on the couch because I'm tired, I guilt myself all day about not doing laundry, not taking my son to the park, or not going to visit family or spend time with friends. It sounded like Dr. Tsai was giving me permission to be lazy sometimes. After I left my appointment I started thinking about my own perception of "rest" and I realized I don't know how to do that. In my mind "resting" and "being lazy" seem like the same thing.
I realize where this perception comes from. My mother always employed the word "lazy" whenever we didn't feel like doing something we should have been doing, like cleaning our rooms or helping her in the kitchen. My dad referred to me as "lazy" one time when I had cramps so bad that I couldn't go help him in the garden. My ex-husband and a couple of ex boyfriends (even the ones I dated while in the exhausting grip of ESRD) loved calling me "lazy" when I would come home drained and ready to collapse in a heap on the couch. I've never been allowed to do this "resting" thing. But I need to learn.
On the days I feel great, I go, go, go! That's my Monday-Friday grind. I work, I manage my life, I deal with the garbage and the shopping and the routine that keeps me on schedule for the next morning. I work in a field that requires me to be giving, thoughtful and present for meeting the needs of other people but I often fall short when it comes to paying attention to what I need.
So today I am giving myself permission to sit on my couch. I'm going to read and watch junk TV and maybe even take a nap. Perhaps I'll watch some movies with my boy, and for lunch, we are having peanut butter and jelly sandwiches. I vow to not let myself feel like a lazy slob because there's a load of laundry in the hamper, or because there are 4 dialysis boxes sitting in my bedroom that need to be thrown out. I'm not going to make myself feel bad that I'm not at some festival, or visiting my family, or going out for a night of fun with my friends. I'm going to put my feet up and pat myself on a the back for all I did accomplish this past week. I'm going to feel good about all the "stuff" I'm going to get done starting Monday morning when my feet hit the (hopefully not soggy) floor.
If you are a dialysis patient, I hope you can do the same. Give yourself credit for all that extra stuff you have to deal with, and for all the stuff you get done every day despite the challenges you face. Be good to your body by giving it time to relax and recover from all you put it through every day. Your body will thank you. And your nephrologist will probably be proud of you as well.
Here's wishing you a perfectly guilt-free "lazy" day!
Like yesterday morning. I woke up to get ready for work when my alarm sounded at 6:30, disconnected myself from the machine, and stepped into my bathroom (which conveniently is about three steps away from the bed). Now, I stopped using drain bags a long time ago, probably three weeks into dialysis, when I figured out how much easier it was to run the drain tube into the toilet and just flush it in the morning. However, yesterday morning when my bare foot hit the bathroom rug, I stepped into a soggy, cold mess. At some point during the night, the tube somehow got pulled out of the toilet and the fluid that drained from my abdomen was pooled up on my bathroom floor. My clothes from the night before, left lying on the bathroom floor were saturated, the rug was saturated, and I had to use about 4 towels to sop up the rest of the mess. Thankfully, the tube wasn't lying on the floor all night, otherwise the folks living in the apartment beneath me would have suffered some rather unpleasant leakage through their bathroom ceiling. Lesson for the future: Tape that sucker to the toilet from now on.
It wasn't a great way to start the day, and coming home to a bathtub filled with dialysate soaked towels, clothes and rugs wasn't a picnic either. I found myself thinking, "Oh great! Something else to stress about."
I work part-time and I have a 9 year old son. I'm a single mom with no family that lives close by to help out, so yeah sometimes I get overwhelmed. Heck, I think I would get overwhelmed without PD in the mix. So when I have days when I'm beating myself up for forgetting to sign an important form for school, or for having dishes in the sink, or for not wanting to go out with friends on the weekend, I remind myself of all the "extra" stuff that has become a part of my life as a result of dialysis.
No one else that I know woke up to a bathroom flooded with bodily fluids yesterday. No other mom at my kid's school has to worry about throwing out 5 extra bags of garbage every week (and that's not including breaking down dialysis boxes and throwing them out). None of my co-workers have to wake up and disconnect themselves from a machine every morning, or plan their bed-time so precisely that they know they'll be able to be up and Adam on time the next morning. No other mom in my kid's school has ever made her kid late in the morning because her cycler (for some reason) took a little longer to finish its job and she had to lie still in bed until it finished because if she got up and started moving, the drain-pain would be excruciating.
At my last doctor appointment I bragged to my nephrologist (the ever-affable Dr. Tsai) that I am often amazed at my level of energy and the amount of "stuff" I can accomplish in one day. I think back to 3 years ago and remember how completely useless I would feel after a day at work, and I'm amazed that I can work, run errands, decorate for a party, buy groceries, pick up my kid, go for a walk and make dinner all in one day and still have enough energy to take a shower before I go to bed. Dr. Tsai never discourages me. He encourages me to stay active and reminds me that keeping my life relatively normal is the best thing for me; but he's also realistic. "That's great," he said with his kind smile, "you just need to make sure you're taking time to rest."
Rest? Really? I take my sleep medication at night and I usually get a good night's rest, but I don't exactly give myself permission to just spend a day taking it easy. If I do spend a Saturday on the couch because I'm tired, I guilt myself all day about not doing laundry, not taking my son to the park, or not going to visit family or spend time with friends. It sounded like Dr. Tsai was giving me permission to be lazy sometimes. After I left my appointment I started thinking about my own perception of "rest" and I realized I don't know how to do that. In my mind "resting" and "being lazy" seem like the same thing.
I realize where this perception comes from. My mother always employed the word "lazy" whenever we didn't feel like doing something we should have been doing, like cleaning our rooms or helping her in the kitchen. My dad referred to me as "lazy" one time when I had cramps so bad that I couldn't go help him in the garden. My ex-husband and a couple of ex boyfriends (even the ones I dated while in the exhausting grip of ESRD) loved calling me "lazy" when I would come home drained and ready to collapse in a heap on the couch. I've never been allowed to do this "resting" thing. But I need to learn.
On the days I feel great, I go, go, go! That's my Monday-Friday grind. I work, I manage my life, I deal with the garbage and the shopping and the routine that keeps me on schedule for the next morning. I work in a field that requires me to be giving, thoughtful and present for meeting the needs of other people but I often fall short when it comes to paying attention to what I need.
So today I am giving myself permission to sit on my couch. I'm going to read and watch junk TV and maybe even take a nap. Perhaps I'll watch some movies with my boy, and for lunch, we are having peanut butter and jelly sandwiches. I vow to not let myself feel like a lazy slob because there's a load of laundry in the hamper, or because there are 4 dialysis boxes sitting in my bedroom that need to be thrown out. I'm not going to make myself feel bad that I'm not at some festival, or visiting my family, or going out for a night of fun with my friends. I'm going to put my feet up and pat myself on a the back for all I did accomplish this past week. I'm going to feel good about all the "stuff" I'm going to get done starting Monday morning when my feet hit the (hopefully not soggy) floor.
If you are a dialysis patient, I hope you can do the same. Give yourself credit for all that extra stuff you have to deal with, and for all the stuff you get done every day despite the challenges you face. Be good to your body by giving it time to relax and recover from all you put it through every day. Your body will thank you. And your nephrologist will probably be proud of you as well.
Here's wishing you a perfectly guilt-free "lazy" day!
Sunday, April 12, 2015
ESRD, Dialysis and Food...The never-ending battle
ESRD wipes you out. Dialysis, even when it's doing a great job at cleaning all the unwanted toxins out of your system, also leeches important nutrients your body needs, like protein, for instance. While it is important for us to replace all those needed nutrients that dialysis removes, it's also imperative that we limit things like salt, potassium and phosphates and most ESRD patients also have to severely limit their fluid intake as well.
I'm one of those lucky people, for now anyway, who doesn't retain fluid. My dialysis nurse commented the other day that she's never had an ESRD patient whose kidneys still produced so much urine. My kidneys work really well at eliminating excess fluids, but they don't filter waste. That's probably one reason that Peritoneal Dialysis works so well for me.
However, like many other ESRD patients, I struggle to keep my protein levels up and keep my phosphate levels down. The biggest dilemma with this is that foods that are high in protein (nuts, meats, beans) are also very high in phosphates. Phosphate levels that are too high can be deadly. Too much phosphate in the blood can lead to heart disease, skin disorders, blood-flow problems, itching, and weakened bones. Lack of protein in the diet of ESRD patients has been directly linked to mortality rates in dialysis patients. In other words, not consuming enough protein can reduce your life-expectancy.
The nurses and doctors at my dialysis clinic are always preaching about phosphate levels, reminding patients to take their phosphate binders with every meal and snack, and expressing the importance of keeping protein levels up. Apparently, there are a lot of ESRD patients out there who neglect taking their binders on a regular basis. When I first started dialysis and was handed a huge bottle of binders to take with my meals I felt a little overwhelmed. First of all, the bottle itself was humongous, the pills are HUGE, and they wanted me to remember to take two of them every time I ate something. I did a pretty good job of it most of the time, and at my next appointment a month later, my phosphate levels were too low. Those pills really work. IF you take them. I confess that after that one lab where my phosphate levels were too low, I doubted the need for binders and slacked off on taking them. As a result my phosphate levels shot up. I know the importance of keeping phosphate levels down, but I still forget to take my binders sometimes. To help myself remember, I have put a bottle of binders on my desk at work, one on the end table in my living room, one in my kitchen and I keep one in my car. That way, I never have an excuse for not taking them whenever I eat. I can have a milkshake in the car (high in phosphate because of milk) without worrying about my phosphate soaring because I have my binders right there with me. It's working really well for me so far.
My biggest struggle is keeping my protein levels high enough. I don't particularly enjoy eating meat. I like eggs, but not every day. Those are two of the lowest options for consuming protein without raising phosphate levels. The other problem I have is that my appetite comes and goes with great irregularity. Some days I feel ravenous all day. Other days, I don't care to eat at all. Honestly, I feel terrible when I don't eat, but at the same time, my body is telling me that food is disgusting and I don't want it. I often have to force myself to eat. The whole time I'm forcing down that sandwich or salad or scrambled egg, I'm saying, "You'll feel so much better after you eat." It's true, I do feel like a new person once I've eaten, but it gets really old, having to force down your meals every day.
When you have ESRD and are on dialysis, you can't help being almost obsessed with what to eat or what not to eat. I've struggled with feelings of guilt, actual guilt, over eating a small dish of ice cream, or having a bowl of cereal with real milk for breakfast. Eating starts to seem like a bad habit, akin to smoking or alcoholism, when you live with the knowledge that everything you put in your body could potentially poison you. I'm glad I don't have to worry about fluid intake. I can only imagine how much more awful I'd feel if I had to stress over drinking a glass of water when I'm thirsty. My heart really goes out to other ESRD patients who have to live with strict fluid restrictions.
I wish I had some helpful advice to give to other folks out there who are struggling with these food issues, but all I can recommend is that you do your best. Take your binders, try to eat healthy and don't be too hard on yourself when you slip up once in a while. There is a lot of information and education online for ESRD sufferers, but very little helpful guidance on the issues we have with food, appetite and the mental toll that constantly worrying about such things can have on you.
Maybe I'm the only one out here who sometimes feels a little crazy over constantly thinking about what I eat and how it's going to show up on my lab work, or how it's going to further destroy my body, but I doubt it. It seems like, instead of one more article about how to eat right for ESRD, someone out there could address the concept of how to live your life with ESRD without letting worries about food consume us.
I'm one of those lucky people, for now anyway, who doesn't retain fluid. My dialysis nurse commented the other day that she's never had an ESRD patient whose kidneys still produced so much urine. My kidneys work really well at eliminating excess fluids, but they don't filter waste. That's probably one reason that Peritoneal Dialysis works so well for me.
However, like many other ESRD patients, I struggle to keep my protein levels up and keep my phosphate levels down. The biggest dilemma with this is that foods that are high in protein (nuts, meats, beans) are also very high in phosphates. Phosphate levels that are too high can be deadly. Too much phosphate in the blood can lead to heart disease, skin disorders, blood-flow problems, itching, and weakened bones. Lack of protein in the diet of ESRD patients has been directly linked to mortality rates in dialysis patients. In other words, not consuming enough protein can reduce your life-expectancy.
The nurses and doctors at my dialysis clinic are always preaching about phosphate levels, reminding patients to take their phosphate binders with every meal and snack, and expressing the importance of keeping protein levels up. Apparently, there are a lot of ESRD patients out there who neglect taking their binders on a regular basis. When I first started dialysis and was handed a huge bottle of binders to take with my meals I felt a little overwhelmed. First of all, the bottle itself was humongous, the pills are HUGE, and they wanted me to remember to take two of them every time I ate something. I did a pretty good job of it most of the time, and at my next appointment a month later, my phosphate levels were too low. Those pills really work. IF you take them. I confess that after that one lab where my phosphate levels were too low, I doubted the need for binders and slacked off on taking them. As a result my phosphate levels shot up. I know the importance of keeping phosphate levels down, but I still forget to take my binders sometimes. To help myself remember, I have put a bottle of binders on my desk at work, one on the end table in my living room, one in my kitchen and I keep one in my car. That way, I never have an excuse for not taking them whenever I eat. I can have a milkshake in the car (high in phosphate because of milk) without worrying about my phosphate soaring because I have my binders right there with me. It's working really well for me so far.
My biggest struggle is keeping my protein levels high enough. I don't particularly enjoy eating meat. I like eggs, but not every day. Those are two of the lowest options for consuming protein without raising phosphate levels. The other problem I have is that my appetite comes and goes with great irregularity. Some days I feel ravenous all day. Other days, I don't care to eat at all. Honestly, I feel terrible when I don't eat, but at the same time, my body is telling me that food is disgusting and I don't want it. I often have to force myself to eat. The whole time I'm forcing down that sandwich or salad or scrambled egg, I'm saying, "You'll feel so much better after you eat." It's true, I do feel like a new person once I've eaten, but it gets really old, having to force down your meals every day.
When you have ESRD and are on dialysis, you can't help being almost obsessed with what to eat or what not to eat. I've struggled with feelings of guilt, actual guilt, over eating a small dish of ice cream, or having a bowl of cereal with real milk for breakfast. Eating starts to seem like a bad habit, akin to smoking or alcoholism, when you live with the knowledge that everything you put in your body could potentially poison you. I'm glad I don't have to worry about fluid intake. I can only imagine how much more awful I'd feel if I had to stress over drinking a glass of water when I'm thirsty. My heart really goes out to other ESRD patients who have to live with strict fluid restrictions.
I wish I had some helpful advice to give to other folks out there who are struggling with these food issues, but all I can recommend is that you do your best. Take your binders, try to eat healthy and don't be too hard on yourself when you slip up once in a while. There is a lot of information and education online for ESRD sufferers, but very little helpful guidance on the issues we have with food, appetite and the mental toll that constantly worrying about such things can have on you.
Maybe I'm the only one out here who sometimes feels a little crazy over constantly thinking about what I eat and how it's going to show up on my lab work, or how it's going to further destroy my body, but I doubt it. It seems like, instead of one more article about how to eat right for ESRD, someone out there could address the concept of how to live your life with ESRD without letting worries about food consume us.
Wednesday, September 10, 2014
Insurance Woes and Employment Nightmares
When I was about 12 the Rubik's Cube was the most popular toy. It was so much fun to take a new, colorful and perfectly arranged cube of color and jumble it all up, then try to put all the colors back into place again. My generation came up will all kinds of ways to work around the puzzle solving aspect of the Rubik's Cube (today they'd call our cheating ways "hacks"). I had one friend who took all the colored stickers off and put them back on again so the colors all matched up. Another pal of mine learned how to completely disassemble the cube and snap it back together. We all tried to share tips and tricks and when all else failed you might find one of us off in a quiet corner employing one of those "hacks."
Having a serious illness has really caused a Rubik's Cube effect in my life, and sadly, I don't think there are any hacks out there to fix things. I often think back on who I used to be before I got sick and wonder what happened to that person. I was put together, organized. I had my life all figured out. I had a good job. I had insurance. I had a roof over my head and a reliable car to drive. I had friends who treated me like a regular person--friends who never probed my face with concerned eyes to look for signs that I'm not doing okay, despite the fact that I'm saying I am. Employers valued me, they didn't look for a reason to fire me because they were afraid I would make their insurance premiums skyrocket. Insurance companies were happy to pay out when I went to the doctor because it was such a rare occurrence.
At this point in my life I have lost 2 jobs due to my illness. One, I am not allowed to talk about publicly for legal reasons. The other was my most recent job, and is the employer with which I am still dealing concerning my COBRA policy.
It is disheartening enough to lose a job working for a non-profit hospice organization because you are seriously ill, but it really boggles the mind when you realize just how determined that organization is to get you and keep you off their books. I realized soon after I was fired from the last hospice job, that the reason for my departure was directly related to the the medical costs I was about to incur using my company insurance policy. At the time I was fired, I had no idea that I would be able to take advantage of the company's group insurance through a COBRA plan. Indeed, I wouldn't have been able to do that, if not for the help of the National Kidney Fund who has been paying the $700.00 per month premiums on my behalf.
Everything has gone surprisingly well up until about a month ago when I was notified that my COBRA plan had been terminated for non-payment of the premium.
Here's how this works, COBRA sends me payment coupons for 4 months at a time. I take those coupons to my social worker at the dialysis clinic. The social worker sends the coupons monthly to the NKF, who then pays the premium, keeping my insurance policy active.
Here's where it all went wrong: The payment coupon for July should have been sent to the NKF in June; however, my social worker, in error believed she didn't have the coupon for July. Therefore the coupon wasn't sent and payment wasn't made. July would have been the last coupon in the set of coupons they last sent me. In early August (maybe the 10th or so) I got a new set of coupons from COBRA and promptly took them to my social worker. It was then that she discovered her mistake, but by then it was too late. My policy had already been cancelled and by law, my former employer is under no obligation to reinstate it. The law says that if a COBRA policy premium is more than 30 days late the employer can cancel the policy and they do not have to reinstate it.
According to the insurance specialist with my dialysis company, most companies would go ahead and accept payment of the missed premiums (especially since it was no fault of my own that the premiums weren't paid). I knew though, that the particular company who held my fate in its hands would not decide in my favor, and in fact they didn't.
Yesterday I got a call from the insurance specialist telling me that she had spoken with the HR director of my former company and was informed that they would not reinstate my policy even though the NKF was standing by with the funds to bring the premium up to date.
Then when I got home I had a letter of claim denial from United Healthcare in the amount of $25,000 for my dialysis for the month of August. Also, any claims that were made in July are denied. I had my first transplant evaluation at MUSC in July, totaling about 15K. Also, I had a couple of ER trips, two gynecologist appointments, x-rays and two ultrasounds in July/August that will not be covered. In short, I have accumulated over $50,000 of medical debt in 2 months.
Medicare will pay 80% on the kidney failure related costs. The ER bills, gynecologist bills, x-rays and ultrasounds are 100% my responsibility. That leaves me with about 12 to 15,000 in medical expenses for just the last 2 months. Dialysis is 25k per month. That means that every month I am going to be stuck with at least $ 5,000 that I'm responsible for. That amount doesn't include medications, for which I now have no coverage.
The really depressing part of all of this though, is that it will ultimately affect my ability to receive a transplant. One of the important factors in deciding who can have a transplant is figuring out whether a patient can afford to pay for the anti-rejection medications post-transplant. Also, with transplants costing upwards of $75,000, the travel expenses to and from MUSC, the time lost from work etc...well, it makes a transplant seem a whole lot like a pipe dream for me.
As far as I know, I have no recourse in this matter. There is nothing I can do except find a Medicare part D plan to cover my medications. Even with a Medicare supplemental plan, I am still responsible for the 50-plus grand that I owe for the last 2 months. I don't make a whole lot of money. I already pay a Medicare premium, and once I add on part D and a supplemental plan, who knows how much of my tiny income will get swallowed up in premiums every month? How much can a person pour into medical costs and still be able to provide for a child and keep the basics in life? Even with my part-time job and disability, I didn't make enough to keep my home. I am now living with a friend who has graciously offered me the opportunity to share expenses so I will have an affordable place for my son and I to live.
Just as two employers have demonstrated already, companies aren't fond of seriously ill employees. We have to take too much time off. We have weak immune systems and catch colds and stomach bugs easily. We have to come in late or leave early for doctor appointments. We cause group health premiums to go up considerably for the rest of the company's employees. Business wise, we are just not a good investment. I have had many great interviews that went south as soon as I had to reveal my illness to explain the gaps in my employment. Also, I have to tell them about my health challenges for safety reasons, and because I may at some point need special accommodations.
The world just isn't a fair place when it comes to those of us dealing with disabilities and illnesses. We are often treated as less-than-valuable in our society, especially in the corporate world where the bottom line has nothing to do with being ethically sound or even decent towards employees. In my case, even a non-profit organization that exists solely for the purpose of helping the seriously ill abandoned me because of my illness. And in this case, there is no justice to be had.
I wish life were still as simple as those lazy summer days when I was twelve years old, hiding in the corner of my room, rearranging the stickers on my Rubik's Cube. But some puzzles have no solutions, even if you do try to find a way to work around the obstacles. This is one of those conundrums.
I hope none of you ever have to be in these shoes.
Having a serious illness has really caused a Rubik's Cube effect in my life, and sadly, I don't think there are any hacks out there to fix things. I often think back on who I used to be before I got sick and wonder what happened to that person. I was put together, organized. I had my life all figured out. I had a good job. I had insurance. I had a roof over my head and a reliable car to drive. I had friends who treated me like a regular person--friends who never probed my face with concerned eyes to look for signs that I'm not doing okay, despite the fact that I'm saying I am. Employers valued me, they didn't look for a reason to fire me because they were afraid I would make their insurance premiums skyrocket. Insurance companies were happy to pay out when I went to the doctor because it was such a rare occurrence.
At this point in my life I have lost 2 jobs due to my illness. One, I am not allowed to talk about publicly for legal reasons. The other was my most recent job, and is the employer with which I am still dealing concerning my COBRA policy.
It is disheartening enough to lose a job working for a non-profit hospice organization because you are seriously ill, but it really boggles the mind when you realize just how determined that organization is to get you and keep you off their books. I realized soon after I was fired from the last hospice job, that the reason for my departure was directly related to the the medical costs I was about to incur using my company insurance policy. At the time I was fired, I had no idea that I would be able to take advantage of the company's group insurance through a COBRA plan. Indeed, I wouldn't have been able to do that, if not for the help of the National Kidney Fund who has been paying the $700.00 per month premiums on my behalf.
Everything has gone surprisingly well up until about a month ago when I was notified that my COBRA plan had been terminated for non-payment of the premium.
Here's how this works, COBRA sends me payment coupons for 4 months at a time. I take those coupons to my social worker at the dialysis clinic. The social worker sends the coupons monthly to the NKF, who then pays the premium, keeping my insurance policy active.
Here's where it all went wrong: The payment coupon for July should have been sent to the NKF in June; however, my social worker, in error believed she didn't have the coupon for July. Therefore the coupon wasn't sent and payment wasn't made. July would have been the last coupon in the set of coupons they last sent me. In early August (maybe the 10th or so) I got a new set of coupons from COBRA and promptly took them to my social worker. It was then that she discovered her mistake, but by then it was too late. My policy had already been cancelled and by law, my former employer is under no obligation to reinstate it. The law says that if a COBRA policy premium is more than 30 days late the employer can cancel the policy and they do not have to reinstate it.
According to the insurance specialist with my dialysis company, most companies would go ahead and accept payment of the missed premiums (especially since it was no fault of my own that the premiums weren't paid). I knew though, that the particular company who held my fate in its hands would not decide in my favor, and in fact they didn't.
Yesterday I got a call from the insurance specialist telling me that she had spoken with the HR director of my former company and was informed that they would not reinstate my policy even though the NKF was standing by with the funds to bring the premium up to date.
Then when I got home I had a letter of claim denial from United Healthcare in the amount of $25,000 for my dialysis for the month of August. Also, any claims that were made in July are denied. I had my first transplant evaluation at MUSC in July, totaling about 15K. Also, I had a couple of ER trips, two gynecologist appointments, x-rays and two ultrasounds in July/August that will not be covered. In short, I have accumulated over $50,000 of medical debt in 2 months.
Medicare will pay 80% on the kidney failure related costs. The ER bills, gynecologist bills, x-rays and ultrasounds are 100% my responsibility. That leaves me with about 12 to 15,000 in medical expenses for just the last 2 months. Dialysis is 25k per month. That means that every month I am going to be stuck with at least $ 5,000 that I'm responsible for. That amount doesn't include medications, for which I now have no coverage.
The really depressing part of all of this though, is that it will ultimately affect my ability to receive a transplant. One of the important factors in deciding who can have a transplant is figuring out whether a patient can afford to pay for the anti-rejection medications post-transplant. Also, with transplants costing upwards of $75,000, the travel expenses to and from MUSC, the time lost from work etc...well, it makes a transplant seem a whole lot like a pipe dream for me.
As far as I know, I have no recourse in this matter. There is nothing I can do except find a Medicare part D plan to cover my medications. Even with a Medicare supplemental plan, I am still responsible for the 50-plus grand that I owe for the last 2 months. I don't make a whole lot of money. I already pay a Medicare premium, and once I add on part D and a supplemental plan, who knows how much of my tiny income will get swallowed up in premiums every month? How much can a person pour into medical costs and still be able to provide for a child and keep the basics in life? Even with my part-time job and disability, I didn't make enough to keep my home. I am now living with a friend who has graciously offered me the opportunity to share expenses so I will have an affordable place for my son and I to live.
Just as two employers have demonstrated already, companies aren't fond of seriously ill employees. We have to take too much time off. We have weak immune systems and catch colds and stomach bugs easily. We have to come in late or leave early for doctor appointments. We cause group health premiums to go up considerably for the rest of the company's employees. Business wise, we are just not a good investment. I have had many great interviews that went south as soon as I had to reveal my illness to explain the gaps in my employment. Also, I have to tell them about my health challenges for safety reasons, and because I may at some point need special accommodations.
The world just isn't a fair place when it comes to those of us dealing with disabilities and illnesses. We are often treated as less-than-valuable in our society, especially in the corporate world where the bottom line has nothing to do with being ethically sound or even decent towards employees. In my case, even a non-profit organization that exists solely for the purpose of helping the seriously ill abandoned me because of my illness. And in this case, there is no justice to be had.
I wish life were still as simple as those lazy summer days when I was twelve years old, hiding in the corner of my room, rearranging the stickers on my Rubik's Cube. But some puzzles have no solutions, even if you do try to find a way to work around the obstacles. This is one of those conundrums.
I hope none of you ever have to be in these shoes.
Tuesday, July 15, 2014
The Evaluation
Last Tuesday I had my first transplant evaluation appointment at MUSC. It was nothing like I thought it would be, with most of the day consisting of my waiting in a tiny exam room with my daughter and son as one medical professional after another paraded in and out. They each asked me the same questions over and over, with the exception of the social worker, whose list of inquiries was the most extensive.
I was already nervous before I arrived, after having read many an online piece about who gets turned down for transplants and why. I walked in the door knowing that I would be scrutinized for my lifestyle, my employment status (or lack thereof), my relationship status and whether or not I have a dependable support system. I am blessed with many loving people in my life and for that I am most grateful; but I am also aware that when it comes down to the day to day functioning of life, I am pretty much on my own. In any regular circumstance, that wouldn't be a problem for me, but when I was quizzed about "caregiver status" I felt like I had to be less than honest about my situation.
The questions I expected, although not easy to answer, seemed par-for the course for a transplant candidate, but there were unanticipated questions that really caught me off guard. For instance, "Have you ever been abused, Rebecca?" Of course my answer was no, but after my appointment that question still nagged at me. Here I am a week later, and I'm still pondering it. What if I had said yes? What if I had been abused as a child or battered in an adult relationship at some point? Would that really nullify my life so much that I wouldn't deserve a chance to keep living? What else about me, my past and my outlook on life could give someone who doesn't really know me the impression that my life isn't worth prolonging?
Kidneys are scarce, transplants are extremely expensive and the medications required to keep that kidney after transplant are outrageously pricey. I understand that they have to use discretion when deciding who gets a chance to live and who doesn't, but I would never want to be put in a position like theirs. I would never want to have the fate of another person's life--their very existence--in my hands. It seems so strange to me that mere human beings get to decide who lives or dies in this way.
I try to be as compliant as possible with my care, but nobody is perfect. I often feel as if my nurses and doctors are shaming towards me if they get the impression I haven't done every tiny thing as they would have me do it. I once told my doctor, "There is more to life than just staying alive." He kind of nodded his head at me, signaling that my choice of words opened up a whole new subject that he was not comfortable discussing with me. His job is to keep me alive, period. My job is to stay alive, but to also create a life for myself that is worth living. Living a good life just isn't as simple as it should be once you find yourself fighting to just stay alive.
The stress of figuring things out takes its toll on a person. The financial devastation, the loss of independence and freedom to come and go as you please start to make you feel like a prisoner in your own world after a while. I live with the fear of becoming homeless lately, of letting my kid down, of waking up one day only to find myself surrounded by memories of what a good life was like. Sometimes I want to fight with all I have in me, and other times, I just want to surrender to it. Does my occasional overwhelmed sense of resignation render me unworthy of a transplant?
For now, I am just waiting to hear back from MUSC, knowing that to a large degree, the longevity of my future lies in the decisions of a few people who know nothing more of me than what they could learn in a 5 minute Q and A session. It is an awful lot like waiting for a phone call after you've had a job interview, with your future resting squarely on the head of someone else, only this time, it's not just a job, it's my life.
Monday, June 23, 2014
A Little Slice of Summer
In my last post I talked about not letting myself be defined by ESRD. This is a post from my other blog about my weekend. While it isn't entirely about ESRD, it is a reflection of how the stress from dealing with chronic illness and the life-upheaval it causes can sometimes make us forget how beautiful life can be.
Yesterday I went on an adventure of sorts up a long winding, rocky mountain trail that tested my strength with every clomp and squeak of my crutches as I pulled myself along. I followed behind, not even able to keep up with the dogs who were excited and ready to run. They meandered on and off the path, smelling everything, peeing on anything they liked. They were too impatient for us humans, two of which, with their strong legs, took everything in stride barely breaking a sweat as they led the way before me. Once in a while they stopped and patiently waited for me to catch up. I'm sure they doubted me. They second guessed our decision to trek down to the river via that particular path but I was determined to make it all the way, even if I had to crawl at some point.
"It's about a quarter of a mile." He said just as we started out.
"Are there hills? Because hills are what worry me with these crutches." I said.
"No," he assured me, it's not hilly."
After we walked about half a mile uphill we stopped for a second to give my underarms a break from the crutches rubbing against my bare skin.
"It's a little farther than I thought." He admitted.
I rolled my eyes, and sighed heavily. "So how far is it then?"
"About another quarter of a mile." He grinned.
We started off again. I tried my best to keep up, but they still, in their wholeness, left me behind. Eventually they got tired of waiting for me, and with the swimming hole ahead, were anxious to dive in.
"Let me carry you," he said. I protested at first, feeling guilty for being broken, for slowing us down and making even the most pleasant, peaceful of activities more difficult than it needed to be.
Having none of my protests he made me wear his heavy backpack, then slung me over his shoulders like a wounded soldier. He carried me, my crutches and the backpack as if we weighed hardly anything. As I hung on tightly we had a light conversation as if two people in such a position making their way
up a mountain path toward the river were perfectly normal. He carried me a good distance, though once my right leg started to tingle from lack of blood-flow he stopped and set me down on my good leg. He handed my crutches back to me and I again started my clomp, squeak, clomp back up the trail through rocks and horse poop, weeds and brambles, trying my best to keep up but still falling behind.
My boy walked between us, a yellow bag full of snacks and sodas weighing him down. He tossed it over one shoulder, then the other, now and then complaining that it was cutting into his skin. I tried to carry it and continue on my crutches but I was scolded for that.
He took the bag from me and carried it for my boy for a few minutes before declaring that he needed to carry me again. That time he left the backpack on and lifted me over his shoulders just as before. The forest became more dense and the wide pathway we started out on had narrowed to a mere foot trail meant to be walked single file, every man for himself. With the boy trailing behind us, he heaved forward uphill, down hill, through thick brush and slanted ground until finally, a clearing.
"I hope you'll think it was worth this once we get there" He said just before we noticed the river within view. He took me into the clearing and set me down on my good leg again. We threw our stuff down on a mound of dirt and moss and he stripped down to his ragged cut offs and jumped into the river. I helped my boy get out of his clothes. In nothing but his underwear he took off without hesitation, which for some reason, took me by surprise.
Before I knew it, the boy was out in the middle of the river, stomping away on the rocks, splashing himself and laughing at the swimming dog.
I made my way down to the riverbank but with only one good leg I felt I could go no further. The thick, black river mud was ready to swallow my crutches should I try to use them to get to the one rock that was close by. So I stood there for a while, feeling happy, enjoying the beautiful river, watching them play, but feeling kind of left out as well.
After a few minutes I finally weakened and asked him to help me get onto the rock. The rock I had in mind was only a couple of steps away, partially covered in mud and so far out of the water I would have only been able to stick a toe in.
He lifted me over his shoulders again and waded out onto the slippery river bed. I protested a little when he started carrying me so far. I was afraid he would slip and fall. But he was steady and confident, telling me to stop talking as he set me down slow and easy on a large rock. "Just ease yourself down right here," he commanded. So that's what I did.
Fully dressed, I sat down on the big rock and slid myself across it to a spot where I could sit and hang my legs over into the cold water. I let the current flow against my feet as I sucked in a deep gulp of fresh mountain air and let my eyes take in the beauty that surrounded me. Poised on my rock I could see up-river, where it forked off in different directions. There were rocks lying just below the surface of the water where my boy ran around picking up smaller stones and tossing them into the deeper water. The dog swam relentlessly, needing an occasional reminder to stop and take a break.
He jumped in again too. Just jumped right off the rock ledge into water so deep that it swallowed him up. He swam with the dog and tried to get my boy to join him in the deeper water, but my boy isn't always trusting of others.
"This," I thought to myself, "is the sweetest taste of summer I've had in a very long time." And I sat there on that rock, my broken leg dangling in the water, the tube in my belly safely in the dry, for a long time. I took in the sounds of strange birds chirping around me, the crackling fire by the riverside, the sound of my boy laughing and making up stories as he played. I felt the breeze blowing down the river, sweeping my sweaty hair back from my face. I brushed my hand across the rocks, felt the familiar slime of the river bottom beneath my toes. I felt the sun baking my skin on one side and shivered as the dog shook beside me, showering my back in cold mountain water. I breathed in the smell of river mud and campfire smoke and for that brief bit of time, I felt a lot like the old me.
I've been missing the old me lately, grieving her even. Life sometimes gets so messy that you can lose yourself among its clutter if you aren't careful. There in the middle of the river I was surrounded by peacefulness. The whisper of leaves blowing in the wind replaced the sound of shuffling papers. Instead of filling out forms and researching options, I sat quietly with myself, trying to figure out a way to keep my Diet Coke from floating away. Instead of propping my leg on pillows, staring at a TV or computer screen, I propped my feet on the rocks and watched my son play. The worries of my usual day were so far away from me that even if I had thought of them, I wouldn't have believed them to be true.
I knew it wouldn't last forever, yet even with the difficult trek back to the car on my mind I had no regrets. I spent my afternoon in the most perfect spot imaginable, although it did take a lot of work for everyone to get there.
Once out of the river we dried ourselves a little by the fire and ate our snacks. It's funny how the water makes you so hungry. Then we set out back down the trail to the car. Again it was work, with me struggling to keep my rhythm on crutches. I had to let him to carry me for a while here and there, but we made it to the car in what seemed like no time at all. The evening was settling upon us as the breeze around us cooled and the sun hid behind the canopy of trees above our heads. We drove with the windows down, not quite ready to close ourselves off from nature completely. With our bellies growling and our worn out dogs sleeping in the back seat, we made our way back home feeling a little lighter inside than we did before we left.
I guess sometimes all you need is a little slice of summer to remind you that life is really, really good.
Yesterday I went on an adventure of sorts up a long winding, rocky mountain trail that tested my strength with every clomp and squeak of my crutches as I pulled myself along. I followed behind, not even able to keep up with the dogs who were excited and ready to run. They meandered on and off the path, smelling everything, peeing on anything they liked. They were too impatient for us humans, two of which, with their strong legs, took everything in stride barely breaking a sweat as they led the way before me. Once in a while they stopped and patiently waited for me to catch up. I'm sure they doubted me. They second guessed our decision to trek down to the river via that particular path but I was determined to make it all the way, even if I had to crawl at some point.
"It's about a quarter of a mile." He said just as we started out.
"Are there hills? Because hills are what worry me with these crutches." I said.
"No," he assured me, it's not hilly."
After we walked about half a mile uphill we stopped for a second to give my underarms a break from the crutches rubbing against my bare skin.
"It's a little farther than I thought." He admitted.
I rolled my eyes, and sighed heavily. "So how far is it then?"
"About another quarter of a mile." He grinned.
We started off again. I tried my best to keep up, but they still, in their wholeness, left me behind. Eventually they got tired of waiting for me, and with the swimming hole ahead, were anxious to dive in.
"Let me carry you," he said. I protested at first, feeling guilty for being broken, for slowing us down and making even the most pleasant, peaceful of activities more difficult than it needed to be.
Having none of my protests he made me wear his heavy backpack, then slung me over his shoulders like a wounded soldier. He carried me, my crutches and the backpack as if we weighed hardly anything. As I hung on tightly we had a light conversation as if two people in such a position making their way
up a mountain path toward the river were perfectly normal. He carried me a good distance, though once my right leg started to tingle from lack of blood-flow he stopped and set me down on my good leg. He handed my crutches back to me and I again started my clomp, squeak, clomp back up the trail through rocks and horse poop, weeds and brambles, trying my best to keep up but still falling behind.
My boy walked between us, a yellow bag full of snacks and sodas weighing him down. He tossed it over one shoulder, then the other, now and then complaining that it was cutting into his skin. I tried to carry it and continue on my crutches but I was scolded for that.
He took the bag from me and carried it for my boy for a few minutes before declaring that he needed to carry me again. That time he left the backpack on and lifted me over his shoulders just as before. The forest became more dense and the wide pathway we started out on had narrowed to a mere foot trail meant to be walked single file, every man for himself. With the boy trailing behind us, he heaved forward uphill, down hill, through thick brush and slanted ground until finally, a clearing.
"I hope you'll think it was worth this once we get there" He said just before we noticed the river within view. He took me into the clearing and set me down on my good leg again. We threw our stuff down on a mound of dirt and moss and he stripped down to his ragged cut offs and jumped into the river. I helped my boy get out of his clothes. In nothing but his underwear he took off without hesitation, which for some reason, took me by surprise.Before I knew it, the boy was out in the middle of the river, stomping away on the rocks, splashing himself and laughing at the swimming dog.
I made my way down to the riverbank but with only one good leg I felt I could go no further. The thick, black river mud was ready to swallow my crutches should I try to use them to get to the one rock that was close by. So I stood there for a while, feeling happy, enjoying the beautiful river, watching them play, but feeling kind of left out as well.
After a few minutes I finally weakened and asked him to help me get onto the rock. The rock I had in mind was only a couple of steps away, partially covered in mud and so far out of the water I would have only been able to stick a toe in.
He lifted me over his shoulders again and waded out onto the slippery river bed. I protested a little when he started carrying me so far. I was afraid he would slip and fall. But he was steady and confident, telling me to stop talking as he set me down slow and easy on a large rock. "Just ease yourself down right here," he commanded. So that's what I did.
Fully dressed, I sat down on the big rock and slid myself across it to a spot where I could sit and hang my legs over into the cold water. I let the current flow against my feet as I sucked in a deep gulp of fresh mountain air and let my eyes take in the beauty that surrounded me. Poised on my rock I could see up-river, where it forked off in different directions. There were rocks lying just below the surface of the water where my boy ran around picking up smaller stones and tossing them into the deeper water. The dog swam relentlessly, needing an occasional reminder to stop and take a break.
He jumped in again too. Just jumped right off the rock ledge into water so deep that it swallowed him up. He swam with the dog and tried to get my boy to join him in the deeper water, but my boy isn't always trusting of others.
"This," I thought to myself, "is the sweetest taste of summer I've had in a very long time." And I sat there on that rock, my broken leg dangling in the water, the tube in my belly safely in the dry, for a long time. I took in the sounds of strange birds chirping around me, the crackling fire by the riverside, the sound of my boy laughing and making up stories as he played. I felt the breeze blowing down the river, sweeping my sweaty hair back from my face. I brushed my hand across the rocks, felt the familiar slime of the river bottom beneath my toes. I felt the sun baking my skin on one side and shivered as the dog shook beside me, showering my back in cold mountain water. I breathed in the smell of river mud and campfire smoke and for that brief bit of time, I felt a lot like the old me.
I've been missing the old me lately, grieving her even. Life sometimes gets so messy that you can lose yourself among its clutter if you aren't careful. There in the middle of the river I was surrounded by peacefulness. The whisper of leaves blowing in the wind replaced the sound of shuffling papers. Instead of filling out forms and researching options, I sat quietly with myself, trying to figure out a way to keep my Diet Coke from floating away. Instead of propping my leg on pillows, staring at a TV or computer screen, I propped my feet on the rocks and watched my son play. The worries of my usual day were so far away from me that even if I had thought of them, I wouldn't have believed them to be true.
I knew it wouldn't last forever, yet even with the difficult trek back to the car on my mind I had no regrets. I spent my afternoon in the most perfect spot imaginable, although it did take a lot of work for everyone to get there.
Once out of the river we dried ourselves a little by the fire and ate our snacks. It's funny how the water makes you so hungry. Then we set out back down the trail to the car. Again it was work, with me struggling to keep my rhythm on crutches. I had to let him to carry me for a while here and there, but we made it to the car in what seemed like no time at all. The evening was settling upon us as the breeze around us cooled and the sun hid behind the canopy of trees above our heads. We drove with the windows down, not quite ready to close ourselves off from nature completely. With our bellies growling and our worn out dogs sleeping in the back seat, we made our way back home feeling a little lighter inside than we did before we left.
I guess sometimes all you need is a little slice of summer to remind you that life is really, really good.
Sunday, June 22, 2014
You Have ESRD, it Doesn't Have You
Almost all the people I see in the waiting room at my dialysis clinic are at least 20 or more years older than me. In the last year I think I have run into one other young person, younger than me actually, who was just getting started with Peritoneal Dialysis. The last year, since I started PD has been a huge adjustment period for me and my family. Even though I was diagnosed with IgA Nephropathy when I was in my twenties, I've never been the kind of person who visited a doctor frequently. Suddenly though, I found myself having to carve out time twice a month to go to the clinic for labs and doctor visits. I often have to call to reschedule, I sometimes show up late and there have been a few times that I've gotten my appointment dates confused or shown up on the right day at the wrong time.
The nurses at my clinic aren't very happy when I reschedule or flake out on an appointment. I understand that it makes their lives more chaotic when patients can't just show up when they are scheduled, but it seems as though the expectations put on younger patients aren't always so realistic. Unlike most of the people who sit in the waiting room with me every month, I have a seven year old kid at home. I have a part-
time job, two adult daughters who still depend on mom here and there, and I stay fairly busy with other pursuits. Especially during the summer I like to be outdoors, camping, hiking, swimming...You name it, so with my life so full of living most of the time, I really need the clinic to show me a little flexibility once in a while without scolding me for not prioritizing they way they think I should.
I tend to become a fairly impatient patient when the clinic treats me as if dialysis and clinic visits should be the center of my universe. I don't have to tell other people who have ESRD that if you're not careful, you'll become this diagnosis instead of being a person who has this diagnosis. You absolutely must hang on to the parts of yourself that you value most. For me, that means being a mom before anything else. It means being able to write, to explore the world around me, to interact with people as much as possible. Whenever I have gone through rough patches, when I'm too fatigued to function normally, when my iron gets too low, or when I've had bad nights on the machine with painful drains, I have ended up terribly depressed. I start to feel like a slave to my body, as if it is somehow sabotaging me on purpose. I start to feel like less of a person and more like a malady.
If I don't focus on who I am and what makes my life feel more complete, I lose track of my identity altogether. I don't feel feminine or pretty or in any way attractive. I don't feel like I am good at anything. I feel like I must be a terrible friend who is so consumed with her own problems that she can't be there for the people who matter most to her. I start to get so down on myself that before long, I am a big bundle of anxiety and depression. The more negative self-talk I engage in, the more convinced I become that I should just stay away from everyone. Isolation actually becomes easier than reaching out. Hiding away, focusing only on my shortcomings becomes a way of life for a while. Let me tell you, I hate getting into that spot, but once I get there, I find it incredibly hard to dig my way out again.
Quality of life should be the most important goal for us and it should also be a goal that is important to our healthcare providers. Sure, I could just let my life start to revolve around hooking up to a machine, ordering supplies for dialysis and waiting around for deliveries. I could keep every single clinic and lab appointment without ever asking for a change, but then I would miss out on a lot of the things that make my life richer and more fulfilling. This disease robs us of so much already, why let it rob me of time I could be spending seeing my son sing with his class at school? Why should I miss out on a once-a year camping trip? Is it really that much trouble to ask for an appointment change here and there just so I can hang on to the parts of my life that have remained "normal" and reassuring?
I know I'm not the youngest PD patient ever, but I see a pattern with healthcare providers that is troublesome, in that we seem to all get lumped in together as ESRD patients and not individuals.
It is easy to get frustrated when the medical profession has such a general perception of ESRD patients. Either we are "young and healthy" because we don't look sick, or as is so often the case with our dialysis clinic staff, we are sick people who have nothing else to do but be sick. The reality is most of us, especially the younger of us, fall somewhere in-between those two constructs.
I am a person with an illness, yet I am young and aside from renal disease, I am reasonably healthy. Every other physical problem I have exists only because my kidneys don't work. I realize that isn't the case with everyone, but then everyone is different. Your disease, your life, your health is a very personal, individual experience. None of us should ever feel as if we are not living up to the expectations of our nurses or doctors because we aren't being "sick"enough. We should never feel the need to apologize for having a life and identity that is not defined by ESRD. These people only know us in context with our disease, but if they took the chance to listen, to understand us, they might realize that there is so much more to our lives than merely surviving to see another day.
I urge you to talk to your dialysis center staff about your life. Tell them what you do with your spare time, let them know that you have people, responsibilities, hobbies and joys in life that are more important to you than anything else. Remind them, by being yourself, that you are not your disease. The only way we can open eyes is through authenticity and openness. I remind my clinic staff that I am a busy woman. I tell them about my camping trips and excursions through the woods. I tell them I go wading in the river, and that I hiked up a mountain. They are starting to know me well enough now that they are curious about what I've been up to whenever I call to reschedule an appointment. While they are no less annoyed with me, they've come to understand that I am not slowing down just because I have a diagnosis for which there's no cure.
We only get one chance to live. We should never feel apologetic for giving it our best shot. By all means, get to your appointments every month, but never feel bad if you need to reschedule for an important reason. Never mind whether it seems important to anyone else. This is your life, your experience, don't let ESRD take anything away from you that you can still hang onto, and don't let your clinic pressure you into feeling as if you are neglecting your health if you reschedule from time to time. A healthy person takes care of the physical, mental, spiritual and emotional parts of himself. The results might not be measurable on your monthly labs, but you will feel the difference, and that's what matters most.
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| November 2013--One of my "rescheduled labs" days. |
time job, two adult daughters who still depend on mom here and there, and I stay fairly busy with other pursuits. Especially during the summer I like to be outdoors, camping, hiking, swimming...You name it, so with my life so full of living most of the time, I really need the clinic to show me a little flexibility once in a while without scolding me for not prioritizing they way they think I should.
I tend to become a fairly impatient patient when the clinic treats me as if dialysis and clinic visits should be the center of my universe. I don't have to tell other people who have ESRD that if you're not careful, you'll become this diagnosis instead of being a person who has this diagnosis. You absolutely must hang on to the parts of yourself that you value most. For me, that means being a mom before anything else. It means being able to write, to explore the world around me, to interact with people as much as possible. Whenever I have gone through rough patches, when I'm too fatigued to function normally, when my iron gets too low, or when I've had bad nights on the machine with painful drains, I have ended up terribly depressed. I start to feel like a slave to my body, as if it is somehow sabotaging me on purpose. I start to feel like less of a person and more like a malady.
If I don't focus on who I am and what makes my life feel more complete, I lose track of my identity altogether. I don't feel feminine or pretty or in any way attractive. I don't feel like I am good at anything. I feel like I must be a terrible friend who is so consumed with her own problems that she can't be there for the people who matter most to her. I start to get so down on myself that before long, I am a big bundle of anxiety and depression. The more negative self-talk I engage in, the more convinced I become that I should just stay away from everyone. Isolation actually becomes easier than reaching out. Hiding away, focusing only on my shortcomings becomes a way of life for a while. Let me tell you, I hate getting into that spot, but once I get there, I find it incredibly hard to dig my way out again.
Quality of life should be the most important goal for us and it should also be a goal that is important to our healthcare providers. Sure, I could just let my life start to revolve around hooking up to a machine, ordering supplies for dialysis and waiting around for deliveries. I could keep every single clinic and lab appointment without ever asking for a change, but then I would miss out on a lot of the things that make my life richer and more fulfilling. This disease robs us of so much already, why let it rob me of time I could be spending seeing my son sing with his class at school? Why should I miss out on a once-a year camping trip? Is it really that much trouble to ask for an appointment change here and there just so I can hang on to the parts of my life that have remained "normal" and reassuring?
I know I'm not the youngest PD patient ever, but I see a pattern with healthcare providers that is troublesome, in that we seem to all get lumped in together as ESRD patients and not individuals.
It is easy to get frustrated when the medical profession has such a general perception of ESRD patients. Either we are "young and healthy" because we don't look sick, or as is so often the case with our dialysis clinic staff, we are sick people who have nothing else to do but be sick. The reality is most of us, especially the younger of us, fall somewhere in-between those two constructs.
I am a person with an illness, yet I am young and aside from renal disease, I am reasonably healthy. Every other physical problem I have exists only because my kidneys don't work. I realize that isn't the case with everyone, but then everyone is different. Your disease, your life, your health is a very personal, individual experience. None of us should ever feel as if we are not living up to the expectations of our nurses or doctors because we aren't being "sick"enough. We should never feel the need to apologize for having a life and identity that is not defined by ESRD. These people only know us in context with our disease, but if they took the chance to listen, to understand us, they might realize that there is so much more to our lives than merely surviving to see another day.
I urge you to talk to your dialysis center staff about your life. Tell them what you do with your spare time, let them know that you have people, responsibilities, hobbies and joys in life that are more important to you than anything else. Remind them, by being yourself, that you are not your disease. The only way we can open eyes is through authenticity and openness. I remind my clinic staff that I am a busy woman. I tell them about my camping trips and excursions through the woods. I tell them I go wading in the river, and that I hiked up a mountain. They are starting to know me well enough now that they are curious about what I've been up to whenever I call to reschedule an appointment. While they are no less annoyed with me, they've come to understand that I am not slowing down just because I have a diagnosis for which there's no cure.
We only get one chance to live. We should never feel apologetic for giving it our best shot. By all means, get to your appointments every month, but never feel bad if you need to reschedule for an important reason. Never mind whether it seems important to anyone else. This is your life, your experience, don't let ESRD take anything away from you that you can still hang onto, and don't let your clinic pressure you into feeling as if you are neglecting your health if you reschedule from time to time. A healthy person takes care of the physical, mental, spiritual and emotional parts of himself. The results might not be measurable on your monthly labs, but you will feel the difference, and that's what matters most.
Friday, June 20, 2014
ESRD, The Bottom Line
For the second day in a row I have sat at my computer trying to think up search words that would deliver information about the financial effects ESRD has on its patients and families. For the second day in a row I have been unsuccessful at finding any information online about foreclosure rates, job loss or loss of other income and and loss of credit as a result of ESRD.
All of us who are in this struggle understand how much an ESRD diagnosis can devastate a person financially. Even with Medicare and private insurance, medical expenses can pile up. Many times families have to choose between paying a medical bill and paying a utility bill. Medical debt is leaving Americans in dire financial straits like never before. The number one cause of bankruptcy in our country is medical bills. So where does that leave all of us who, although we have been good financial stewards all our lives, find ourselves faced with a life-threatening financial obstacle like ESRD?
If you look online to find statistics of or resources for people who have lost their homes, jobs, savings and credit scores you won't find many. Do a Google search of ESRD paired with the words "financial" "economic" or "foreclosure" and you'll get results for ESRD's cost to Medicare, a couple of posts to message boards from ESRD people who are facing foreclosure, articles about economic incentives for healthcare providers and the economic benefits of preventing ESRD. The system is failing somehow, to notice the financial difficulties that families face as a result of ESRD.
There has to be a starting place where we can all have a voice to raise awareness not only of the physical, mental and emotional effects of this disease on our lives and the lives of our loved-ones, but of the financial devastation it can cause as well.
Many people with ESRD are unable to work or can no longer do the type of work they used to do. Many are unable to continue working full-time. Those who qualify for Social Security Disability tend to exist on a fraction of the income they had when they were able to maintain full-time employment. There are others, like me, who are receiving SSDI and working part-time as an independant contractor to supplement that income. As able-bodied as I feel these days, finding an employer who will risk hiring someone with such a chronic illness has been pretty much a futile endeavor.
Before I started dialysis last year I had full-time gainful employment with health insurance. My employer did not know that I had ESRD. I never felt the need to share that information with them, and had already gone through one experience at another job where I was let-go after they found out I was planning to get a transplant using my company's insurance. Once I found out that I had a date for surgery to place the PD catheter, I felt I had no choice but to be up-front with my boss about it. I worked on the day of my surgery which was on a Friday. I was back at work by the following Tuesday. I worked through pain and discomfort for weeks, added to the extreme fatigue from the disease itself before starting dialysis, it was quite a battle for me to keep moving forward. A month later, I was again let-go. My employment record had been spotless. I had never received any type of warning or write up, but suddenly my job performance was brought into question and I was deemed incompetent for the job. Not having SSDI in place, I was left to file for Unemployment Compensation. I had to live on about 40% of my regular income for 6 months. In that time period I applied for hundreds of jobs. I applied for jobs for which I was overqualified. I went on interviews and had phone interviews that went splendidly until I shared why I was unemployed. I could see the disconnect in the eyes of the interviewer when I said the word "dialysis". I know it's illegal to discriminate against someone because of a disability, but there's no way to prove discrimination in these cases. Potential employers are never going to admit that they neglected to offer you a job because of your illness. They will always give another, more legitimate sounding reason.
The unemployment checks ran out just before Christmas. Thank goodness I had found some part-time contract work by then because it was the only thing that got us through the month. Then in January I started receiving SSDI. SSDI pays less than unemployment, even with the amount my son gets added in, so my part time work has been a life saver. Still, my mortgage is way past due and is in the final days of foreclosure right now.
It doesn't help that renal osteodystrophy has left my bones weak. A month ago I had a run in with my dogs that left me with a broken leg. So on top of the challenge of finding employment and a new home, I have a pair of crutches and a wheelchair with which to contend until September when I'm allowed to try to walk again.
I know I can't be the only ESRD patient who is facing these kinds of obstacles, but when I reach out for any kind of support, nothing is there. Where are all the other people with this disease who are losing their homes and struggling to keep their lives together because of financial set-backs? Where are the programs that help people like us stay on our feet, aside from just covering the cost of our medical care and insurance premiums? I'm not discounting the organizations that pay COBRA or Medicare premiums for patients. Without those programs many of us would never afford treatment. But let's face it, there's more to life than just staying alive.
We need to be able to provide for ourselves and our families. We got unlucky enough to get ESRD, but our responsibilities didn't disappear the day we started dialysis. There are people still depending on many of us. We shouldn't have to give up everything we have just to keep existing.
Where do we start? If we are ever going to see change we will have to step up and create it. The first step is to talk about these issues more openly and to share our financial woes and worries with people who understand. An open dialogue about these issues will bring them out into the light of day, exposing another facet of how this disease profoundly changes the lives of those who have it. With one out of every 10 Americans having chronic kidney disease (CKD) or End Stage Renal Disease, it is time for our country to take notice. We need the same awareness, support and advocacy that other life-threatening and life-altering diseases get and that activism, education and advocacy will have to start with those of us who have ESRD and the people who love us.
I encourage you to use this blog as a forum for discussing the financial impact ESRD has had on you and your family. Perhaps by sharing our stories we will be able to also find resources out there that can help meet our needs.
There's a comment link below, use it to share your story or to add your thoughts about this issue.
Thursday, June 19, 2014
Stay Positive: Good advice Or Unrealistic Expectation?
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| Rosa, from OITNB |
present
time, showing her bald head and aged skin is most unsettling. One scene in particular that struck me was when the Prison Counselor, Mr. Healy is sitting at his desk explaining to Rosa that the state will not pay for the cancer treatment she needs to stay alive. He follows that up with a speech about the importance of staying positive, and a comparison to someone in his family who seemingly beat cancer with nothing more than a pleasant attitude. Rosa isn't buying it. She heard what her doctor said loud and clear, that without that particular treatment, she was a goner. I identified with her so much in her response to Mr. Healy's well intended pep talk. She remains outwardly angry, but you can see the grief in her eyes and she accepts her diagnosis and refuses to grapple for the false hope that Healy is dangling in front of her. He is visibly uncomfortable with Rosa's resignation, as many people in our lives are when we don't jump on the "positive attitude" bandwagon and stay there perpetually.
Of all the pieces of unsolicited advice we ESRD patients get from everyone, from family members to perfect strangers, "You have to stay positive." is probably the most heard and most frustrating one.
Often, we feel pressured to smile and pretend that everything is fine so we don't make the people around us sad or uncomfortable, but on the inside we are dealing with a stark reality. We are chronically ill. There is no cure for what we have. There are only ways to manage and buy time, and none of our options are particularly bright and cheery. On the outside we may look as healthy as the next person. Nobody knows about the tube taped up to your side underneath your clothes unless you show it to them. Nobody notices the access in your arm unless you choose to wear short sleeves so they can see it. Those people aren't there at night when you hook yourself up to a machine, and they aren't with you three days a week at the clinic while you get your blood clean. Our hair doesn't fall out, we don't have to endure the nausea and discomfort of chemotherapy, so how bad can it be? We often feel the need to play along with the expectations of other people in order to keep them from showing pity for us, or to keep them from worrying about us. They need us to stay positive. They are asking us to stay positive, because they can't handle us when we are realistic about where we are and what we're dealing with.
So I am wondering if "Stay Positive" is really a great piece of advice that through a mind-body connection leads to better outcomes for ESRD patients, or is it an unrealistic expectation placed on us by the people in our lives who aren't able to cope with our illness.
There's certainly something to be said for a positive attitude. It motivates you to keep working towards a happy life. It helps you cope with difficult days and it keeps you connected to people in more fulfilling ways. However, I think it is truly unrealistic and even unfair to demand that someone who is dealing with the pressures of this disease or any other life-threatening illness remain in a positive state of mind at all times. Part of processing the loss of health from chronic illness is finally coming to an attitude of acceptance. Perpetual hopefulness requires a certain level of denial to maintain. At some point, if we are to assimilate our losses and find peace with our lot in life, we have to acknowledge and accept what is happening to us. Without that acceptance we will remain stuck, our personal growth will be stunted and we may miss out on a very important part of who we are supposed to be and what we are supposed to learn from life.
The reality is we will not be cured. We will not go into remission. We will be coping with ESRD for the rest of our lives. We will either be slaves to the dialysis machine or we will be transplanted with kidneys that might or might not last. We will be swallowing hand fulls of pills just to stay alive, we will suffer the side effects and financial blows that the cost of maintaining life imposes upon us. The reality looks pretty grim, and if it's your reality, you can only refuse to look at it for so long before the ugliness of it catches up with you.
We shouldn't feel bad about not being able to maintain a positive attitude all the time. We shouldn't stuff down our thoughts and emotions to protect the people around us who can't or won't come to terms with what we are facing. We can feel down sometimes. We deserve the opportunity to grieve for the lives we used to have and to grieve for a future that seems fraught with stress and struggle instead of whatever we had always planned. We need the space to make the transition from healthy to sick in our own way and in our own time-frame and we don't deserve the admonition to be positive every time we express a negative thought.
There is often a fine line between dealing with reality and allowing yourself to fall into the trap of self-pity. Staying in a place of sorrow and pity for yourself is no better than walking around with a fake smile plastered on your lips. Either extreme robs you of authenticity. If you are perpetually positive, you may be unable to accept and process the negative effects of your disease, if you are perpetually depressed and full of self-pity, you will never learn to value and live in each moment you are given.
We need to give ourselves permission to feel our pain, our sorrow and even our hopefulness. We need those who love us to understand what a complex process we are going through, and that it wouldn't even be healthy for us to never have a day when we aren't discouraged by it. We are human and often our weaknesses and fears catch up with us, even when we are trying our best to keep a positive attitude towards life and our disease process. We don't want this for ourselves, and we don't want to put you through it with us, but it is what we have, so give us the freedom to experience it wholly in all its negative and positive ways. Let us grow through it and with it, as you try to accept us even on days when we can't take your advice.
Maybe you're wondering now, "If I can't tell you to stay positive, what can I say when you're down?" And the best answer I can give you is to just be there with us. Acknowledge with us how crappy things really are. Let us be who we are in each moment, allow us to feel our emotions without judgement. Don't shame us for the days or weeks or even months when we feel buried by the stress of a life with ESRD. Just stand with us, give us permission to be. Remind us that you love us no matter what. Give us permission to grieve both aloud and in private. This is our experience. It is our chance to grow, to become something new and better, but we will never achieve that if we aren't allowed the opportunity to process the feelings that well up inside us.
And perhaps during those times when we can't find anything to feel hopeful about, you can take up the slack and feel hopeful for us until we make it over the next hump and find our own place of peace and hopefulness once more.
Welcome To ESRD Support
I had my Facebook page linked to my other blog, when I realized that my other blog is much more personal and includes a lot more than just information or my personal experience with ESRD. This morning I took the time to create a new blog page just for my Facebook followers on the ESRD page, and I moved some of my older posts regarding ESRD from The Quest to this blog.
My life isn't my disease. I am not my disease, so I will maintain The Quest as a personal outlet to share my life experiences and document my personal growth. This blog is strictly for ESRD related issues. I welcome your comments and contributions and hope we are able to build a community of support for our fellow ESRD patients, their families and their loved-ones.
I hope that my personal experiences can at least help someone feel less alone in their battle with this disease. I encourage you to share your own thoughts about coping with ESRD from day to day, how it affects your outlook on life, how it affects your children, your finances and even your spirituality.
There are so few support networks in place for people like us and our families and loved ones also lack the kind of emotional and practical mechanisms for helping us cope with our disease. We experience losses and our families go through those grieving processes with us. The least we can do is be present for one another in times of grief and transition.
Please take some time to wander around the ESRD blog and suggest any topics that would be helpful to you.
I welcome guest writers who have something positive and informational to share with others. Just contact me about writing a guest post. I will have to read it and possibly edit for grammatical mistakes before it is published and I do not guarantee that your contributions will be published, but I will read them and give each one fair consideration. I make no money from this blog, so I cannot pay for your contributions.
Thanks for stopping by, and I hope you'll become a regular here!
My life isn't my disease. I am not my disease, so I will maintain The Quest as a personal outlet to share my life experiences and document my personal growth. This blog is strictly for ESRD related issues. I welcome your comments and contributions and hope we are able to build a community of support for our fellow ESRD patients, their families and their loved-ones.
I hope that my personal experiences can at least help someone feel less alone in their battle with this disease. I encourage you to share your own thoughts about coping with ESRD from day to day, how it affects your outlook on life, how it affects your children, your finances and even your spirituality.
There are so few support networks in place for people like us and our families and loved ones also lack the kind of emotional and practical mechanisms for helping us cope with our disease. We experience losses and our families go through those grieving processes with us. The least we can do is be present for one another in times of grief and transition.
Please take some time to wander around the ESRD blog and suggest any topics that would be helpful to you.
I welcome guest writers who have something positive and informational to share with others. Just contact me about writing a guest post. I will have to read it and possibly edit for grammatical mistakes before it is published and I do not guarantee that your contributions will be published, but I will read them and give each one fair consideration. I make no money from this blog, so I cannot pay for your contributions.
Thanks for stopping by, and I hope you'll become a regular here!
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