Moving is always an adventure. Most of us loathe the process, but enjoy the change. Moving to a new state entirely for the first time in your life while you are ill and receiving new technology in treatment is more than an adventure. I am but a sad New Mexican who is ignorant to how the world outside of New Mexico works. The Federal part of our wonderful country is a layman's understanding as well as the history for myself. But New Mexico is like a small town that runs at a very low speed and is off the beaten track.
Along this first year in Texas, I have been through my share of awakenings. In the short five or six weeks I had before having my gastric stimulator implanted, I had to move in, familiarize myself with the area, get address changes for everything under the sun, switch my son's insurance, and do all the preliminary stuff for the surgery. I thought all that was hard. I thought all I had to do is get acquainted with new doctors and get a new driver's license. Boy, was I wrong.
Doctor's alone have kept me on my toes. Of course there are several and frequent appointments for my stimulator. The first year of recovery and calibrations is tough. I also have had to establish with a neurologist, an endocrinologist, a dermatologist, and a rheumatologist. If you have read some of my previous posts you will know that a rheumatologist is no longer necessary as the symptoms seem to be a latent version of adrenal insufficiency that has been difficult to pinpoint. I am still needing a urologist for interstitial cystitis and an ophthalmologist, but the task seems so daunting at the moment I have procrastinated greatly. Unfortunately, it seems as though my primary care doctor needs to be replaced. That's a topic for another post, but let's just say she's not the best with being thorough or with her bedside manner.
I am on Medicare so none of this is easy. Less doctors in Texas take Medicare so it was like finding a needle in a haystack just for the doctors and services I need. I have changed prescription drug plans three times. Recently, I ran into a new road block. This story has plenty of twists and turns. Are you ready?
Back in early November, an 18-wheeler somehow came into our apartment complex and smashed our mail center. It is just a gazebo with the mail boxes all around. Supposedly his GPS took him the wrong way, but any logical person would know not to turn into an apartment complex in an 18-wheeler. Needless to say, every one's mail was in there. The apartment management had no real answers for us other than, "You can now pick your mail up at the post office until the insurance can get us a new mail center." What about the mail that was in our boxes at the time? A mystery yet to be solved. Here we are at the beginning of April and we are still picking up our mail at the post office.
I had been running low on pump supplies for a few weeks now and I had not received any word about my automatic shipments like I usually do. Medicare makes you go through a third-party supplier and they usually send me an email the day it is shipped. I finally called them. I was informed that Medicare is no longer contracted with them. They have switched to a "Competitive Bidders' Market" in our area. I was advised to call Medicare to move forward because I should have received a notice back in October or November. Do you see where this is going?
Just a few months earlier, I had been working with my doctor's office on getting a new pump supply prescription because mine had expired. We began the process in late September, but the back and forth was finally done with in November. I received everything I needed. Now, switching over to a new supplier meant getting a new prescription. I knew this would be a potentially long process, but gritted my teeth and pushed through, step by step getting increasingly more frustrated. I couldn't get my old supplier to send out complimentary supplies to get me through. They could not transfer the old prescription; don't ask me why because they gave me an answer that makes absolutely no sense as most things in the medical field do. The manufacturer somehow had no record of me since 2011. Well Medtronic, I bought a new pump in 2012 that you sold me, I have been receiving supplies since than that the third-party gets from you, and finally I have an Enterra gastric stimulator implanted in my abdomen that you all made and registered for me eight months ago. (Everybody clap your hands for eight productive months) They also refused to send out some "hold-me-over" supplies all due to the fact that no one has a "current" prescription except the supplier who no longer supplies me. Aaahh
I start putting one foot in front of the other to begin the long process of finding a new third-party supplier. When I called Medicare they gave me three phone numbers of three different suppliers. The first two did not supply pump supplies. Check them off. The third said they did. Yay....they began the registration and started the paperwork right away to get me squared away. It took only a week of back and forth confusion this time to get the new prescription done. I finally received my supplies last Friday, and they were the wrong supplies.
It was a generic brand of supplies that claimed it works for all pump models including...and it gave a list of manufacturers and models. My model was not on the list. Next step, call the manufacturer to see if the generic is even possible. There is a high likelihood that the pieces do not fit my model and may possibly crack it. I turned back to the supplier. Suddenly, no one was available in the pump department to service my call that day so I left a message. That felt odd. I did tons of research on the Internet, because where else do you turn for honest information (haha). I kept coming across the same information the manufacturer had given me. Nothing can be done on a weekend so I tried to block it out until Monday. I did contact my NM diabetic educator to ask for supplies because no office here has them on hand. I also contacted my sister who has a similar model of pump. Both are doing what they can to help with supplies until I have this straightened out. I finally gave in and paid cash for supplies to give me a bit of a cushion. Stockpile baby, stockpile. Then I get a call saying they will not ship out supplies because I am a Medicare patient who needs to go through a third-party supplier with a prescription.
On Monday I called the third-party supplier, All American Medical, and notified them of the mistake. I was informed they do not supply my particular needs. Back to Medicare I go. I got two phone numbers for the "Competitive Bidders' Program". Surprise, surprise. These suppliers do not supply pump supplies. At this point I am thinking, "this competitive-bidding program is definitely not organized or handled well". When I was waiting on hold for the umpteenth time with Medicare, I decided to go online to see if I could pull up some names for this "Competitive Bidders' Program". Thank the Lord, I did. 17 were listed for my zip code so I went straight down the list. I called everyone of them I could and was very specific about the supplies I needed for my particular pump. About five businesses in, I found one. They only supply Medtronic pump supplies. Phew. Now, I await the aligning of the third-party and my doctor's office. This time I talked to my doctor's nurse and drilled into her what I need the prescription to say so I can leave this trouble behind as quickly as possible. By this time, I believe she feels the same.
Little by little, you learn how to navigate the world. New Mexico is not in the "Competitive Bidders' Market" so I had never dealt with this. Apparently, the program is new across the board but some states do not fall into it. After ripping my hair out, losing my cool with every single person I talked to, and spending all weekend trouble shooting with my family's help, I now know exactly what to ask when dealing with Medicare and third-party suppliers. I also know that screaming does not help a thing. As if at the ripe ol' age of 31 I didn't know that, but, ya know, long term stress can manifest an entire person you do not recognize. Luckily, the beast in me is only in view sparingly and this year I am releasing all demons so soon I can be the me I have always known....or possibly, quite possibly, a better me.
I am noticing more energy. I am noticing a more nourished look throughout my body. I am noticing a lighter heart. The volunteering, church, my son's school and teacher, and enjoying our new surroundings has really started to bring to light the me I used to know and embrace. Being so ill everyday can wear on you and most of us feel a great deal of guilt, inadequacy, and grief when going through a change like a diagnosis of a new disease along with its symptoms. Sometimes we get lost in it all and forget who we really are or think because the disease has caused limitations that somehow limits our personality or self worth. This healing process and recovery from what I have been through these past few years including the gastric stimulator implant has been a long road, but proving to be worth it. Lessons learned, wisdom gained, strength and resilience abound and a new heart and mind rise from the ashes made by the bridges of our "old" selves burned like the Phoenix.
That was a bit off track, but the lesson of "no matter how many times I think I've got it covered" i.e. my insulin pump supplies and Medicare, there is always a wrench coming in, eh hem "Competitive Bidders' Program", to teach you a new lesson. Along the way more layers of yourself are pulled back to open up a new part of you.
I certainly don't mean this post to come across like I am worse off than anyone else or that I have seen more pain than others. I know that is not the case by any stretch. I just realize everyday that I have not seen every struggle or I would know how to face them more appropriately.
Never stop learning....just try to stay level headed unlike I did.
Showing posts with label minimed. Show all posts
Showing posts with label minimed. Show all posts
Wednesday, April 2, 2014
Tuesday, June 12, 2012
A Bump In The Road
Life dependent on a durable medical equipment can be tricky. I am reminded of this on a daily basis while completely everyday tasks, but none compared to what I experienced this past weekend.
I am a pump patient. That is diabetes jargon for I use an insulin pump to deliver my insulin throughout the day as opposed to insulin injections with syringes and needles. The insulin pump is an amazing invention. It is about the size of a pager. It has buttons to control its functions similar to that of a pager. Inside there is a battery for power as well as a reservoir the patient fills with insulin. The reservoir is connected to some tubing that is connected to an infusion sight on the patient. An infusion is similar to an IV in that it is a tube inserted into the body, except an infusion for insulin goes into subcutaneous tissue (fat) as opposed to the vein. The infusion is only changed out every few days so it has made the quality of life for insulin dependent diabetics drastically better.
Using shots required diabetics to schedule their entire lives around these shots. There are several different types of insulin that are absorbed differently and can be used for various occasions, but there is always peaks and valleys the patient has to work around. Meaning food is required during the valleys and activity should be done during peaks to insure the most natural and comfortable outcome.
An insulin pump, on the other hand, has the potential to eliminate or minimize these peaks and valleys. This is due to the fact that insulin is delivered in small doses throughout the day. As a patient with this technology we have the power to tell it what to do and how to do it. Patients know their bodies better than anyone. This allows us to live a little more freely, and have our medicine right at the touch of a button. As you would imagine, not everything is flawless.
This past Friday I changed out my infusion as well as my reservoir on my pump (Medtronic 523). To me this is always a good feeling because the insulin is fresh and I have the peace of mind knowing I will not have to mess with it for another 72 hours. This is increasingly harder for me because over the years patients develop scar tissue that can affect absorption in addition to my weight loss it is harder and harder to find good sights. This particular sight wasn't necessarily comfortable, but I thought I could tough it out for a few days.
A few hours past and I noticed my blood sugars creeping up. This is not normally a red flag. Blood sugars fluctuate all the time, especially in woman with hormones fluctuating as well. A normal blood glucose (sugar) reading is between 80-120 or 70-110 depending on who you ask. My normal average is in the lower 100s. By 5:00pm I was 300. I was definitely feeling it. My vision was slightly blurred. I felt very sluggish and heavy. My hands and legs were starting to get numb. All signs of high blood sugar. I told my pump to give me some insulin to bring it down. That process usually takes 2-4 hours. Two hours later I check and I am at 250. Another correction. An hour later I check, just to see if there is progress being made, and I see 245.
Ugh. This is very frustrating for a well controlled diabetic who is active and eats well. These numbers are not something I am used to seeing especially when I have been on point for several days with food, insulin, and activity. I won't bore you anymore with all the details that go behind it all, but some troubleshooting needed to be done.
I personally have people to contact in extenuating circumstances such as these to prevent a trip to the ER if at all possible. I am sure most pump patients have similar set ups. I checked with my professional and throughout the evening we worked on trying to bring my blood sugar down. Finally, a good old fashioned shot with a syringe and needle did the trick. We thought possibly the infusion might be to blame. Sometimes, rarely, the tubing can get kinked. Sometimes, again rarely, the infusion is in scar tissue and so the insulin is not being absorbed properly. Whatever the case, it is always safe to redo a sight if unexplained highs are occurring. That's exactly what I did that night, twice. Yup, you read that right. I changed my sight 3 times that day. Not a fun time, but doable if necessary.
The next morning I woke up in the 170s. On the rise....again. A good fasting blood sugar is below 120 for sure, and typically I am there. Why, then, if I have not eaten badly, I've exercised adequately, and I am not ill or menstruating, is my blood sugar so high? I checked with my professional again. At this point even she was at a loss so she advised me to call Medtronic. I did, immediately.
The representative on the phone was very nice. She began walking me through various troubleshooting options. None of which were panning out. In my head I am starting to think I am either too thin or have too much scar tissue........will I have to stop using the pump? No, please, no!!!! She decides to try one last ditch effort at solving our problem. She suggests I rewind (basically reset) the pump and start fresh. When I go to remove the reservoir from the pump I notice moisture. Droplets inside the reservoir as well as it's holding area in the pump. There should never be moisture in the pump.
Turns out, the o-rings in the reservoir are faulty. They are leaking. Imagine a syringe and how fluid is sucked up into it with a plunger. At the end of the plunger there are o-rings to prevent leakage from the wrong end of the syringe. Similar concept in the reservoir. So, when I was asking my pump to "push" more insulin into the tubing so that it would be "pushed" into my body for absorption the pump was pushing. As it was pushing, however, the insulin was leaking out the back end rather than being forced through the tubing. I went nearly 26 hours with very little insulin delivery.
My reason for sharing this story: I have been a pump patient for over 5 years. I have never had this happen before. My professional had not even thought to have me check the reservoir for problems. I imagine this problem is very uncommon but not impossible. I know that pump therapy has been amazing for me with very little hassle. I just want it to be known that these seemingly impossible flaws may be the cause of some unexplained problems.
Lesson learned here: keep a very open mind when troubleshooting. It doesn't matter how long you have been diabetic. It doesn't matter how well controlled you may have your disease. It doesn't matter what type of education you have or how much you know about your disease and the tools you use to control it. You may be missing something. And finally, when in doubt, call the manufacturer!!
Lucky for me this event, although scary, was not too bad. My blood sugar was high but not frighteningly. It stayed high for some time, but we caught it early. The worst part was the symptoms of high blood sugars, the stress and doubting on my own part, and the shocking realization that even my pump is not perfect.
I am a pump patient. That is diabetes jargon for I use an insulin pump to deliver my insulin throughout the day as opposed to insulin injections with syringes and needles. The insulin pump is an amazing invention. It is about the size of a pager. It has buttons to control its functions similar to that of a pager. Inside there is a battery for power as well as a reservoir the patient fills with insulin. The reservoir is connected to some tubing that is connected to an infusion sight on the patient. An infusion is similar to an IV in that it is a tube inserted into the body, except an infusion for insulin goes into subcutaneous tissue (fat) as opposed to the vein. The infusion is only changed out every few days so it has made the quality of life for insulin dependent diabetics drastically better.
Using shots required diabetics to schedule their entire lives around these shots. There are several different types of insulin that are absorbed differently and can be used for various occasions, but there is always peaks and valleys the patient has to work around. Meaning food is required during the valleys and activity should be done during peaks to insure the most natural and comfortable outcome.
An insulin pump, on the other hand, has the potential to eliminate or minimize these peaks and valleys. This is due to the fact that insulin is delivered in small doses throughout the day. As a patient with this technology we have the power to tell it what to do and how to do it. Patients know their bodies better than anyone. This allows us to live a little more freely, and have our medicine right at the touch of a button. As you would imagine, not everything is flawless.
This past Friday I changed out my infusion as well as my reservoir on my pump (Medtronic 523). To me this is always a good feeling because the insulin is fresh and I have the peace of mind knowing I will not have to mess with it for another 72 hours. This is increasingly harder for me because over the years patients develop scar tissue that can affect absorption in addition to my weight loss it is harder and harder to find good sights. This particular sight wasn't necessarily comfortable, but I thought I could tough it out for a few days.
A few hours past and I noticed my blood sugars creeping up. This is not normally a red flag. Blood sugars fluctuate all the time, especially in woman with hormones fluctuating as well. A normal blood glucose (sugar) reading is between 80-120 or 70-110 depending on who you ask. My normal average is in the lower 100s. By 5:00pm I was 300. I was definitely feeling it. My vision was slightly blurred. I felt very sluggish and heavy. My hands and legs were starting to get numb. All signs of high blood sugar. I told my pump to give me some insulin to bring it down. That process usually takes 2-4 hours. Two hours later I check and I am at 250. Another correction. An hour later I check, just to see if there is progress being made, and I see 245.
Ugh. This is very frustrating for a well controlled diabetic who is active and eats well. These numbers are not something I am used to seeing especially when I have been on point for several days with food, insulin, and activity. I won't bore you anymore with all the details that go behind it all, but some troubleshooting needed to be done.
I personally have people to contact in extenuating circumstances such as these to prevent a trip to the ER if at all possible. I am sure most pump patients have similar set ups. I checked with my professional and throughout the evening we worked on trying to bring my blood sugar down. Finally, a good old fashioned shot with a syringe and needle did the trick. We thought possibly the infusion might be to blame. Sometimes, rarely, the tubing can get kinked. Sometimes, again rarely, the infusion is in scar tissue and so the insulin is not being absorbed properly. Whatever the case, it is always safe to redo a sight if unexplained highs are occurring. That's exactly what I did that night, twice. Yup, you read that right. I changed my sight 3 times that day. Not a fun time, but doable if necessary.
The next morning I woke up in the 170s. On the rise....again. A good fasting blood sugar is below 120 for sure, and typically I am there. Why, then, if I have not eaten badly, I've exercised adequately, and I am not ill or menstruating, is my blood sugar so high? I checked with my professional again. At this point even she was at a loss so she advised me to call Medtronic. I did, immediately.
The representative on the phone was very nice. She began walking me through various troubleshooting options. None of which were panning out. In my head I am starting to think I am either too thin or have too much scar tissue........will I have to stop using the pump? No, please, no!!!! She decides to try one last ditch effort at solving our problem. She suggests I rewind (basically reset) the pump and start fresh. When I go to remove the reservoir from the pump I notice moisture. Droplets inside the reservoir as well as it's holding area in the pump. There should never be moisture in the pump.
Turns out, the o-rings in the reservoir are faulty. They are leaking. Imagine a syringe and how fluid is sucked up into it with a plunger. At the end of the plunger there are o-rings to prevent leakage from the wrong end of the syringe. Similar concept in the reservoir. So, when I was asking my pump to "push" more insulin into the tubing so that it would be "pushed" into my body for absorption the pump was pushing. As it was pushing, however, the insulin was leaking out the back end rather than being forced through the tubing. I went nearly 26 hours with very little insulin delivery.
My reason for sharing this story: I have been a pump patient for over 5 years. I have never had this happen before. My professional had not even thought to have me check the reservoir for problems. I imagine this problem is very uncommon but not impossible. I know that pump therapy has been amazing for me with very little hassle. I just want it to be known that these seemingly impossible flaws may be the cause of some unexplained problems.
Lesson learned here: keep a very open mind when troubleshooting. It doesn't matter how long you have been diabetic. It doesn't matter how well controlled you may have your disease. It doesn't matter what type of education you have or how much you know about your disease and the tools you use to control it. You may be missing something. And finally, when in doubt, call the manufacturer!!
Lucky for me this event, although scary, was not too bad. My blood sugar was high but not frighteningly. It stayed high for some time, but we caught it early. The worst part was the symptoms of high blood sugars, the stress and doubting on my own part, and the shocking realization that even my pump is not perfect.
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