"No" to the Proposed Medicare Cuts on Dialysis

My blog post this week is about the proposal by the Centers for Medicare and Medicaid Services (CMS) that would cut Medicare reimbursement for dialysis. I am very concerned about these proposed cuts, and how it would impact my friends at the dialysis center. According to one of the articles that I’ve read, these cuts would reduce the reimbursement rate by 10% to almost $20 per dialysis session. Medicare reimbursement already does not cover the cost of dialysis. At three days a week at about four to five weeks per month, that would be at least an additional expense $240 per month.

If I were still undergoing dialysis treatments, these cuts would probably not make significant difference for me. Thanks to my employer, I have excellent health insurance. Since I had been on dialysis for some four years, I did rely on Medicare to pay for 80% of my dialysis treatments. Since the rest was paid for my insurance, I have had minimal costs per treatment and for that, I feel fortunate. However, I am probably in the minority.

I am thinking of the other patients in the center who completely rely on Medicare to pay for their treatments. For someone with a fixed income or are unemployed, an additional $240 per month would be a significant strain on their budget. People on a fixed income already have a difficult time ‘making ends meet.’

I am thinking specifically of the lady who usually sat across from me. I believe her name is Lupe. She is an older lady, and usually has a hard time when she was having treatments.  She did not speak English; so we rarely had a conversation (I am not that conversant in Spanish either).

Lupe had to stop working because her dialysis treatments were making her very exhausted. For extra money (probably really to make ends meet), she made and sold tamales. Making tamales probably also kept her mind off dialysis and her kidney disease. She would sell tamales in the center, and the technicians loved it. They would order 10 at a time and different flavors (she sells them for $1.50 each). I actually had two of them, and they were absolutely delicious.

I cannot imagine what might happen to Lupe if these cuts are implemented. An additional $240 per month would be hard on someone who is unemployed. This may mean that she has to cut on food or worse, on prescription drugs and even on some dialysis treatments.

And it is just not Lupe, it is also Jerry, who has to continue dialysis because he is considered too old and too ill; the Chinese lady who did not seem to have any family who would take care of her, and my husband’s buddy and fellow Pittsburg Steelers fan, who has to keep on working because he has a family to help take care of. Multiply this number with the number of dialysis centers all over the country and there would be thousands of very good people affected.

Dialysis patients are suffering enough - we need to support them as much as possible. As the petition states, “We urge the Administration and Congress to ensure that Medicare reimbursement for dialysis is sufficient to cover the cost of care.” Please contact your local representative through the National Kidney Foundation's Take Action Network.

It is the humane and compassionate thing to do!

Flashbacks

Last week, one of my friends at work asked me a question about dialysis. Her husband, unfortunately, has to start dialysis soon, and they were hoping that they could postpone starting dialysis for another month. Their reason for postponing was not frivolous (and personal that is why I am not sharing it in this post), so I understood why they are thinking of delaying the inevitable. 

We had a brief, but good chat about dialysis, and I was glad to share my experience. It looks like I answered her question and gave her some good tips. At the end, she said her husband is trying his best to maintain the little kidney function that he has.

I mentioned to her that I was in a similar position when I was diagnosed and had to watch my diet closely. Although I did not share this with her, I remembered that my husband and I tried to keep my kidney function up, primarily through diet. I did have to watch my diet like a hawk to keep it from falling completely. I ate very little protein per day: only four ounces, if I remember correctly. I had to give up my favorite soy chai lattes and had to be very creative with meals. Most days, I was having no protein for breakfast, two ounces for lunch and two ounces for dinner, or some combination of thereof.  My meals were mostly carbs and vegetables. It was not the good, high fiber carbs either; it was white bread, white rice, white flour – ugh! No more brown rice, Wheaties, or multigrain muffins. I was lucky to be Asian and having white rice as a staple in our diet. My favorite meal was usually breakfast when I can have muffins! I figured since I am watching everything, I can have some sugar twice a week. Occasionally, I can have an egg for breakfast since that was considered one ounce.

I was fortunate back then; I was still peeing so I did not have any fluid restrictions. I think that was one of my treats. Since I was suffering from gout, I was drinking black cherry juice. I would have that with some of my meals, but dilute it with water and ice (black cherry juice was a bit too sweet for me).  I even considered making a faux-sangria with it by adding apples and oranges (did not attempt to do so though – not the same without wine). Speaking of sangria, I had to limit my alcohol intake. I probably just limited it to one glass of wine (or sangria) per week, if any. Yes, I became an inexpensive date (not cheap, though).

My diet back then was very restrictive. I kept (and am still keeping) a food diary so I can keep track of my intake and things that trigger my gout attacks. I can imagine that this would be trying to anyone especially if you have a “meat and potatoes diet”. I was able to stay out of dialysis for a year. During this period, my husband and I were very thankful for every .01 increase in my GFR (Glomerular filtration rate - a measure of how well the kidneys are working).

I hope all goes well with my friend and her husband. They have a lovely family and their young kids would need Dad around for a long time. I wished them well and offered my advice anytime she needs it. Been there and doing my best to give back… and not to be there again.

Six months later...

It has been six months since my transplant. Overall, I think I am doing great. In my appointment with my transplant nephrologist last week, he said that my lab numbers look great. If these numbers continue, I may just need to go to the labs once a month. My doctor even said that these are ideal for a kidney transplant recipient. My last creatinine was 0.95! My husband and I couldn’t be any happier.

I am elated with these results and am very determined to maintain these numbers. For me to able to maintain these great numbers, I need to remember to do these key items.

Take your medications regularly. Taking your immunosuppresants, anti-infection, and other maintenance medications are very important for any transplant recipient. This ensures that the immunosuppressant levels, which are critical in preventing the body to reject the new kidney, are at optimum levels. I should read my post on taking your meds as a reminder.

Keep moving.  This means exercise, exercise, and more exercise. I find that when I walk, my body (and mind) is able to function more efficiently. I make it a point to exercise at least 20-30 minutes a day whether if it is walking, practicing aikido, or dancing hula. Sometimes I do overdo it, like last Saturday, when I went to a 2-hour hula workshop and walked almost 40 minutes (one way) to go to a baseball game. While it is important to move, do it in moderation and consult your doctor before you start a new exercise routine. I have to keep reminding myself that my surgery was not too long ago. Rest and recovery are still equally important.

Maintain a balanced diet. Must. Eat. Healthy. Since I now have a healthy kidney, I can pretty much eat whatever I want. I do not have any more restrictions on phosphorus (and therefore no need for binders) so I can add whole wheat and other grains in my diet. I loved experimenting on different grains. When I was in dialysis, I was pretty much limited to white rice and white bread. Now, I can have quinoa, barley, corn meal, and oats (my favorite). I still need to be careful though; immunosuppressants may increase potassium in one's system so you may need to watch high-potassium foods like bananas, mangoes. and coconut. More on this later…. I feel a post coming.

Maintain food safety. Just as important as keeping a healthy diet is maintaining excellent food safety.  Bad bacteria in foods can make you sick, and since my immune system is lowered, I am more susceptible to illness. Also, my nutritionist said that certain salmonella can considerably damage my kidney. Maintaining good food preparation habits and selecting reputable restaurants with a clean kitchen are very important. Check the National Kidney Foundation's article on Food Safety or my previous post on this.

Keep hydrated. My new kidney needs to be constantly hydrated, so I need to drink plenty of water. In fact, my excellent creatinine results were partly due to the summer heat. I was drinking so much water since I was always thirsty with this summer heat. To my surprise, my creatinine considerably improved. I do need to go to the bathroom more… deal with it!

Manage your stress levels. Stress has been known to adversely affect one's health: whether it is stress from your medical condition, work, or relationships. I try to keep my stress-levels low by having a positive attitude and surrounding myself with positive people. I also try to have some quiet time either through meditation, walking, or even blogging. These allow me to center myself and hear my thoughts better.

Have a good support system. Having an understanding husband and good close friendships were very key during my recovery. My husband provided most, if not all, of the physical help needed in that period: cooking meals, cleaning, driving me to doctor’s appointments. He was a rock, and I am very grateful he is here to support me. My friends also provided encouragement and support even though some of them are hundreds, if not, thousands of miles away. They kept my spirits up and kept me going. I need to remind myself to maintain my relationships and never take them for granted.

I still have a long way to go, and getting through these last six months is just a step in the process. I want to have a healthy kidney for a long time, maybe for the rest of my life. To accomplish that I need to continue to always keep these tips in mind.

I’d love to hear from you if you have any more advice for me. Wish me luck!!!

Walk On

“To grow, to discover, we need involvement which is something I experience everyday, sometimes good, sometimes frustrating.”

- Bruce Lee

Feeling down this week.  There is a situation in my hula group with one of the newer students, and I think her behavior will force me to quit the group. I am deeply saddened and extremely angry with this. I love dancing hula, and I have been in this group for more than five years. To leave because someone is uncivil and disrespectful is disappointing.

This situation has caused a lot of stress and agony.  My blood pressure has been elevated and have not been sleeping very well. I have been very sad, angry, and moody as a result of this.This week, only after two days of crying, anger, meditation, and introspection, I have finally returned to my happy normal self.

In my introspection, moving on may be the best move for me. If one is in a negative situation, the best defense is almost always to walk away.  Some may think that it is running away, but I interpret this as taking the high road, avoiding a truly destructive situation, and not stooping down to their level. As someone who is only had a kidney transplant less than six months ago, having a positive attitude is important.  I feel that given my priorities, it is not worth it to attempt to continue going to a place where I regularly experience stress, especially if it is an extra-curricular activity. As much as I love my teacher and most of my hula sisters, I have a new kidney to protect, and weekly stress and frustration will not be beneficial to it and my overall health. 

I still have other activities to enjoy, and will continue dancing hula, whether it is on my own or with a new group. As Bruce Lee had said, “Walk on”.

Take your meds!

I recently saw a (web) presentation on medication adherence. According the presenter, about 50% of patients living in developed countries do not follow treatment recommendations. I was very surprised to hear this statistic (So surprised, that I even confirmed it via wikipedia). Fifty percent is a huge number, and I think that taking your meds the way your doctor has prescribed them is critical to improving your health, especially during one’s recovery from surgery.

Bracelet to remind me of my binders

As an example, when I was getting dialysis treatments, the dietician and the charge nurse always reminded me to take my binders to keep my phosphorus levels low. I hated those pills – they were horse pills (See my previous post – Got pills?). I could not count how many times I almost choked on those things. Regardless, I took them with every meal and snack. I was determined to keep my phosphorus low, even if there were times when my phosphorus levels were going the opposite way and I did not think the binders were working.

After my transplant, taking my medication is even more important, specifically the anti-rejection or immunosuppressants. To ensure that I have adequate levels in my blood stream, I need to take my medication every 12 hours, like clockwork. It is very important. I have an alarm in the morning and in the evening as a reminder and a prescription diary to keep track of what I take daily.  The transplant pharmacist once told me that a transplant recipient lost the kidney because that patient kept forgetting to take his/her medication on time. Since I am determined to keep this kidney for a long time, it is very important to me to take my meds at the specified time. 

I have an alarm for meds!

Don’t get me wrong. I do forget my medication sometimes. I can think of more than a handful of times when I forgot to take my blood pressure pills or even my phosphate binders. The key is to make it the exception, not the rule. For blood pressure pills, take them as soon as you remember. Also, make a note on what occasions make you forget to take them (mine is usually when I am in a hurry or distracted) and try to correct it.

In that presentation, I learned that many people never order their prescriptions. Some order them, but never pick up their filled prescriptions from the pharmacy. Other people pick up their medication, but don’t follow their physician’s instructions.  Although I have had a history of researching every medication that has been prescribed to me and sometimes questioning why I take them, I usually work with my physician to get a win-win situation. As an example, I have not been a big fan of taking statins for cholesterol. I’ve read of the side effects, have seen those side effects first-hand, and would prefer an alternative drug. However, I worked with my then primary care physician to lower my cholesterol (specifically triglycerides) without taking statins. We found an alternate drug. Ironically, I am taking statins now for maintenance (I may have a conversation with my transplant nephrologist after a few months).

That presentation inspired me to be more mindful of taking my medication regularly, and I am hoping this post will inspire you to do the same. Do whatever it takes to take them on time and at the correct dosage, whether you need to set an alarm or keep a diary. “Not taking your medicine as directed can also lead to other health problems, especially if you already have asthma, diabetes, or high blood pressure” (From ScriptYourFuture.com). And remember, diabetes and hypertension can lead to kidney disease.

Rogue Kidney's Weekend Off

Hubby and I experienced another first this past weekend: it was our first weekend get-away in several months. This was the weekend of my annual aikido weekend intensive workshop in Monterey, California. Hubby thought that I was ready for it as long as I took some appropriate precautions. Besides, it would be really good to just get away.

Going into this weekend, we did make a few adjustments. Since I am still technically on probation (i.e., I should not dine out too much), I brought my lunch the first day.  We were very mindful of our meals and made sure that we dined in some very good establishments and that my food was thoroughly cooked and made to order, for me – two of the things that we really need to live-by, literally. I still wanted to have a nice dining experience or two, and we did that!

I also (regrettably) did not attend the group picnic lunch. Picnics can be hazardous for kidney transplant recipients, since like buffets, food would most likely has not been stored at the appropriate temperature, and/or for the appropriate amount of time, making it a germ factory. AND there is no microwave in sight to zap those bugs out. Oh well, it is a small price to pay for a fairly normal life.

I was able to participate two out of three days of the workshop or seven out of nine classes. I figured that resting the third day would be a pretty good idea; after all, it’s not even been five months since my transplant. One of the senseis (“teachers”) even commented that she was rather surprised to see me on the mat at all. I thought I did pretty well. I only got really tired at the end of the last class on Saturday; we had five classes that day.

Hubby and I spent as much time as possible together. With me in the workshop most of Saturday, we only shared lunch and dinner that day. We did enjoy, most of Friday with each other and shared a great day together on Sunday. Since we were both exhausted, we enjoyed a short walk at Lover’s Point (how appropriate), visited the Aquarium (I had to put on my mask on because of the crowds) and shared lunch at our most favorite place in Monterey (Schooner’s-on-the Bay at The Monterey Plaza Hotel).

I did gain almost four pounds (I think mostly in fluid) from our dining out. Luckily, I lost most of it as of this writing.

We’re looking forward to more weekends like this one. I love getting away and being in a new environment, especially when one has been at home for almost five months. I also enjoy being near the ocean. It’s very relaxing to be in the fresh air and enjoying the sounds of the ocean.

 

Happy Summer Travels! Bon Voyage!

A Homecoming of Sorts

Hubby and I visited my dialysis center last Friday. We were overdue for a visit, but we just received the go-ahead at my last check-up from my lead transplant nephrologist.

We timed our visit so that some of the techs would be on their dinner break and, hopefully not too busy. I had mixed feelings about the visit. On the one hand, the technicians and nurses have become my friends, and I do miss them. On the other, the center had some really stressful and frustrating memories for me.

We were so warmly welcomed. The technicians missed us. Unfortunately, my favorite ‘sergeant-at-arms,’ err … charge nurse was not there at the time. I guess we just have to visit again, some other day.

They commented about how good I looked and how my complexion has improved (I remember having really dry skin when I was in dialysis, and I probably looked tired a lot).  Most of them have been wondering when or if I would come and visit.  Most folks don’t come back after getting their transplant. Some of the patients even commented that we’re a good walking advertisement for a kidney transplant. I look both very healthy and happy!

In spite of the happy reunion, the place did look a bit sad and quiet that day. Maybe it was because the techs were on dinner break. Normally, when I showed up for treatment, I was in a fairly bright mood; the technicians and I would exchange jokes. Don’t get me wrong, there were days when I did dread coming to dialysis, especially when I was sick or had an awful day at work. Most of the time, I tried to make the best it, usually by escaping in my fashion magazines, watching my favorite TV shows, getting lost in playing games on my iPod, and of course, enjoying a conversation with Hubby.

Looking around that day, the patients looked very, very quiet. There was certainly sadness in the air - perhaps a quiet acceptance of their situation. I talked to some of my old friends, acquaintances (as did Hubby, who chatted with a fellow Pittsburg Steelers fan, friend of his). I’ve learned that some of them have been waiting for a transplant for even longer than I; one of them was recently refused a transplant because he was deemed too old (and too ill). Many of these patients even had to delay any travel, because of the ongoing dialysis treatments.

After this visit, I appreciate the gift of a receiving a second chance in my life even more!

I no longer have to go to dialysis three times a week and have the ability to enjoy travel without worrying where and when to dialyze. I am so sad that there are so many others who are still waiting, wanting, and perhaps, running out of hope – can you imagine! I so wish that they will not give up, because that gift can come in the middle of the morning, on any given day, seemingly out of nowhere – as it did for me and for us.