Hello All,
I made it through another day!! Although I was able to get everything completed and added to the new blog, I ended up having a difficult afternoon. I suddenly had chest pains and overall weakness. I first took my blood pressure and found it was suddenly high even though I was sitting in my recliner and had been for over an hour. My heart rate was up. I checked my blood sugar level and found it was high. These were all signs that my potassium levels were low, so I checked my potassium level with my potassium meter and found I was indeed low. I took some potassium bicarbonate, and within thirty minutes, I began to feel a little better and never went into an episode of paralysis.
However, I never did regain my strength and did not feel strong enough to get up for dinner so Calvin brought it to me. I was thankful it was mostly soft food because I did not have the strength to chew much and because earlier in the day, as I was eating breakfast, my jaw bones near my temples began to have severe pain as I chewed and I was unable to complete my meal. I had soft food for lunch also. I will have to eat soft food again today....
Yesterday, in our educational support group, there was quite a discussion about the purchase of potassium meters and a newer device for measuring our potassium levels in our saliva or blood. They work much like a glucose meter, which measures the level of sugar in our blood. However, the two biggest differences are; the meters are not medical devices and are very expensive. The original device, which is no longer being manufactured, was $250.00 and the new potassium meter is $350.00. Because they are not medical devices, insurance will not pay for them. This is a large issue for those of us with Periodic Paralysis, because potassium shifting is the bottom line of our condition. When it shifts, we become either weak or paralyzed. We need to know if our potassium level is high, low or in normal levels, so we can know how to treat our symptoms.
I wrote the following to the company to explain why and how we need and use potassium meters and why the price needs to be lowered and why it would be a good thing to have it declared a medical device:
I made it through another day!! Although I was able to get everything completed and added to the new blog, I ended up having a difficult afternoon. I suddenly had chest pains and overall weakness. I first took my blood pressure and found it was suddenly high even though I was sitting in my recliner and had been for over an hour. My heart rate was up. I checked my blood sugar level and found it was high. These were all signs that my potassium levels were low, so I checked my potassium level with my potassium meter and found I was indeed low. I took some potassium bicarbonate, and within thirty minutes, I began to feel a little better and never went into an episode of paralysis.
However, I never did regain my strength and did not feel strong enough to get up for dinner so Calvin brought it to me. I was thankful it was mostly soft food because I did not have the strength to chew much and because earlier in the day, as I was eating breakfast, my jaw bones near my temples began to have severe pain as I chewed and I was unable to complete my meal. I had soft food for lunch also. I will have to eat soft food again today....
Yesterday, in our educational support group, there was quite a discussion about the purchase of potassium meters and a newer device for measuring our potassium levels in our saliva or blood. They work much like a glucose meter, which measures the level of sugar in our blood. However, the two biggest differences are; the meters are not medical devices and are very expensive. The original device, which is no longer being manufactured, was $250.00 and the new potassium meter is $350.00. Because they are not medical devices, insurance will not pay for them. This is a large issue for those of us with Periodic Paralysis, because potassium shifting is the bottom line of our condition. When it shifts, we become either weak or paralyzed. We need to know if our potassium level is high, low or in normal levels, so we can know how to treat our symptoms.
I wrote the following to the company to explain why and how we need and use potassium meters and why the price needs to be lowered and why it would be a good thing to have it declared a medical device:
I have a very rare hereditary disease called Periodic Paralysis (PP). The type I have, a variant of Andersen-Tawil Syndrome (ATS) Type 2, is the most rare type of this condition. It is an ion channelopathy. It affects the body on the cellular level.
Those that have this condition have a problem with potassium entering the muscle cells in error. When this happens the muscles weaken or become paralyzed and it can last from a few minutes to several hours to days at a time. As the muscles are paralyzed, it effects the heart causing life-threatening arrhythmia (including Long QT interval heartbeat), tachycardia or bradycardia, fluctuating blood pressure, low oxygen levels, choking and the possibility cessation of breathing, cardiac arrest and /or respiratory arrest.
Individuals with PP have a myriad of triggers which can set this into motion: certain foods, stress, exercise, medications, sleep, salt, sugar, wheat, gluten, heat, cold, IVs, anesthesia and more. When we eat or experience a trigger, it causes the potassium in our body to either increase or decrease or just shift in normal ranges. When either of these happen, the weakness or paralysis and serious symptoms begin. So, we must discover and know what the triggers are in order to avoid them. Sometimes we can do everything right and we can still have episodes of paralysis.
When we begin to feel symptoms, we can use a potassium meter device that can let us know if our potassium is high, low or normal and this allows us to know how to treat it or a caregiver to know how to treat us or whether they need to call for an ambulance. Unfortunately, this device is not a medical device and as long as this device is not a medical device, insurance companies will not pay for it. You now have a new device which is apparently easier to use but costs $350.00. Most families cannot afford this.
If made into a medical device, your sales would increase because they would be paid for by medical insurance and every family with an individual with Periodic Paralysis that needs one could get it. As well, every paramedic, ER, hospital, doctor's office and school nurse could then have one, paid for by the company they work for, and be trained on how to use them so they can know instantly what is happening with the person's potassium levels for quick treatment. Individuals may die while they wait for traditional blood tests to come back from the lab with the results.
I
have a website and discussion and support groups to help others with this disease. We
have members from all over the world and most of them cannot afford
this device and suffer daily in paralysis and the other life threatening
symptoms I discussed. Many of them have low to no quality of life. This device
would help by knowing sooner whether they need to take potassium or
avoid it or for their caregivers to know if they need to go to the
hospital, etc.The quality of life could improve for many individuals with Periodic Paralysis. Sales would increase because there is a world-wide need.
Please visit my website to learn more: www.periodicparalysisnetwork.com
Thank you"
I am now in contact with employees from this company. They have been very helpful and we are in discussion over these issues. We remain hopeful that changes can be made making this device more affordable and accessible.
Have a good day!
Until later...
Please visit my website to learn more: www.periodicparalysisnetwork.com
Thank you"
I am now in contact with employees from this company. They have been very helpful and we are in discussion over these issues. We remain hopeful that changes can be made making this device more affordable and accessible.
Have a good day!
Until later...
