Ok...the holiday is over, and I have got lots of catching up to try to get done...
Lets start with edema. To put it plainly, lots and lots. I've been swelling (mostly in my legs) daily for the last week. No reason for it; the swelling just happens. Plus, I have not felt the swelling increasing; which is different for me. Because of the edema, I've got lots of new bruising around both ankles. Ugly.
I've also had a lot of lower leg cramps happening just about every day. The L leg seems to be having more (or more intense) cramping than the R. I've been woken from my sleep three times over the last ten days.
The pain over my kidneys has increased again. The R still seems tio be worse, though both sides are now affected all of the time. The pain isn't too bad yet, but i will keep an eye on any increases in pain levels.
My headache has been ranging from 7-9. Still no break in the now two plus year long headache. TMD has not been an issue, and I am ever aware of TMD complications every time they arise to intensify the headache.
My appetite has been bad. Nausea has been steady and definitely influences how much I eat. On Thanksgiving day I had taken only a few delicious bites before I was overcome with nausea...so much for the holiday dinner. I am averaging about 1.75 cups of food per day. On trhe occasion i do eat more than that, I end up feeling nauseated from feeling like my food just isn't sitting well.
My sleep continues to be all over the place. In between to variety of nightly sleeping lengths and naps, I continue to feel exhausted. I must admit that i've had a few days of feeling somewhat energetic, so I do more work around the house; only to over-do
things and feel exhausted once again.
Overall, I've been doing only OK. I have had a few days that were better than most, and lots of feeling lousy; leaving with just doing OK.
Anyway, my headache is killing me--yes, I have already taken a T3--so i am not thinking well at all. So, I'll be on my way. I know I've slipped on the frequency of my entries, and I will try to be better.
Good Heath to All!
ScottW
Monday, November 28, 2011
Wednesday, November 16, 2011
Newsletter: Medication Coverage
I have a few more newsletters from The Transplant Experience, a service of Astellas Pharmaceuticals to seeks to educate transplant eligible patients about the many varied aspects involved with planning for, going through, and life after an organ transplant. This newsletter edition deals with meds...
The medication costs associated with transplantation can add up quickly, but financial barriers should not prevent you from receiving the medications intended for you by your doctor. Fortunately, there are a number of financial assistance options available.
Co-Pay Cards Provide Instant Savings
Co-pay cards provide a way to balance medication access with cost savings. Sometimes referred to as "point-of-sale" cards, co-pay cards can be presented at your retail, specialty, or mail-order pharmacy to reduce your out-of-pocket medication costs.
The Medication Co-Pay: Understanding Your Out-of-Pocket Costs
Most prescription drug plans have a formulary, a list of medications covered by that plan. Drugs on the formulary will be assigned to different levels of coverage, called tiers, which will in turn determine your co-pay amount:
Tier 1—lowest co-pay. Includes generic prescription drugs.
Tier 2—medium co-pay. Includes many brand name drugs, called preferred brands.
Tier 3—highest co-pay. Includes non-preferred generic and brand name drugs, which generally have lower-cost treatment options in tiers 1 and 2.
Tier 4—co-insurance. Includes specialty drugs, paid for as a percentage of the total drug cost.
(To learn more health insurance basics, be sure to download the "Understand Your Coverage" brochure under the Support section of http://www.transplantexperience.com/.)
There are many different kinds of co-pay cards available.3 In exploring your options, you may find that there's a tradeoff between the savings offered and the number of medications covered by the card. Non-profit organizations, like RxAssist, offer co-pay cards for a wide range of drugs, but often at low, fixed rates of savings.4 These are often redeemable in place of your private prescription coverage benefit, but can help offset high co-pays/deductibles, cover medications off-formulary, or assist you if you've already reached your plan's coverage maximum.5 Co-pay cards available through pharmaceutical companies, however, tend to offer higher savings rates specifically on their own brand name medications—sometimes on top of your prescription drug benefit.
Prescription Assistance Programs
You may also wish to consider prescription assistance programs (PAPs), which offer coverage or co-payment assistance to eligible individuals.7 Although PAPs are primarily known for subsidizing medication costs for uninsured or government-insured individuals, PAPs can also accommodate a wide range of privately insured individuals. Some PAPs, like HealthWell, will work with your private prescription insurance to supplement coverage for certain medical conditions.8 Others, like the Astellas Access Program, will cover the costs of Prograf and other Astellas medications for those financially eligible, regardless of the type of health insurance you have.
Since PAPs are numerous and wide-ranging, resources such as Partnership for Prescription Assistance, NeedyMeds, and RxAssist organize various PAPs by drug, medical condition, and region to help you build a list of programs that may be right for you. With eligibility requirements and medications covered by these PAPs constantly changing, you can always refer back to these sites periodically to reassess your options.
Be sure to discuss your findings with your transplant team—and, together, you can build a manageable financial plan for accessing the medications critical to your transplant health.
If you would like to learn more about Astellas Pharmaceuticals and the Transplant Experience, I encourage you to visit www.TransplantExperience.com to learn more. They provide a wealth of information for anyone looking at a life living with organ transplantation.
The Medication Coverage You Need
The medication costs associated with transplantation can add up quickly, but financial barriers should not prevent you from receiving the medications intended for you by your doctor. Fortunately, there are a number of financial assistance options available.
Co-Pay Cards Provide Instant Savings
Co-pay cards provide a way to balance medication access with cost savings. Sometimes referred to as "point-of-sale" cards, co-pay cards can be presented at your retail, specialty, or mail-order pharmacy to reduce your out-of-pocket medication costs.
The Medication Co-Pay: Understanding Your Out-of-Pocket Costs
Most prescription drug plans have a formulary, a list of medications covered by that plan. Drugs on the formulary will be assigned to different levels of coverage, called tiers, which will in turn determine your co-pay amount:
Tier 1—lowest co-pay. Includes generic prescription drugs.
Tier 2—medium co-pay. Includes many brand name drugs, called preferred brands.
Tier 3—highest co-pay. Includes non-preferred generic and brand name drugs, which generally have lower-cost treatment options in tiers 1 and 2.
Tier 4—co-insurance. Includes specialty drugs, paid for as a percentage of the total drug cost.
(To learn more health insurance basics, be sure to download the "Understand Your Coverage" brochure under the Support section of http://www.transplantexperience.com/.)
There are many different kinds of co-pay cards available.3 In exploring your options, you may find that there's a tradeoff between the savings offered and the number of medications covered by the card. Non-profit organizations, like RxAssist, offer co-pay cards for a wide range of drugs, but often at low, fixed rates of savings.4 These are often redeemable in place of your private prescription coverage benefit, but can help offset high co-pays/deductibles, cover medications off-formulary, or assist you if you've already reached your plan's coverage maximum.5 Co-pay cards available through pharmaceutical companies, however, tend to offer higher savings rates specifically on their own brand name medications—sometimes on top of your prescription drug benefit.
Prescription Assistance Programs
You may also wish to consider prescription assistance programs (PAPs), which offer coverage or co-payment assistance to eligible individuals.7 Although PAPs are primarily known for subsidizing medication costs for uninsured or government-insured individuals, PAPs can also accommodate a wide range of privately insured individuals. Some PAPs, like HealthWell, will work with your private prescription insurance to supplement coverage for certain medical conditions.8 Others, like the Astellas Access Program, will cover the costs of Prograf and other Astellas medications for those financially eligible, regardless of the type of health insurance you have.
Since PAPs are numerous and wide-ranging, resources such as Partnership for Prescription Assistance, NeedyMeds, and RxAssist organize various PAPs by drug, medical condition, and region to help you build a list of programs that may be right for you. With eligibility requirements and medications covered by these PAPs constantly changing, you can always refer back to these sites periodically to reassess your options.
Be sure to discuss your findings with your transplant team—and, together, you can build a manageable financial plan for accessing the medications critical to your transplant health.
If you would like to learn more about Astellas Pharmaceuticals and the Transplant Experience, I encourage you to visit www.TransplantExperience.com to learn more. They provide a wealth of information for anyone looking at a life living with organ transplantation.
Tuesday, November 15, 2011
15 November 2011
I just looked at my blog and saw it has been eight days since my last entry. So, lets get going...
Since I don't remember many specifics, I'll have to go with generalities.
To start, overall things have been OK. Less nausea, lower headaches, less pain over the kidneys,and fewer days of just feeling awful. My appetite has also been up, taking in around 2 cups of food per day.
I don't know why the change--maybe one of those little breaks that help me to rejuvenate in advance of the next period of feeling really bad. No matter...I'm just glad that things have been a bit easier.
My sleep has been all over the place. I might get between 5-9 hours at night, then nap (or not) during the day, and then asleep again by midnight. Other nights I'm up almost all night, then only get about four hours of sleep before waking. On those days I get little sleep I try to stay awake, but rarely am able to do so; succumbing to a four or five hour nap in the early afternoon. Like I said, my sleep is all over the place. During all of this, whether sleeping well or not, any time I am awake I continue to drag as if I have zero energy. Some days I feel as if I am walking around in a stupor.
As I stated above, my headache has, overall, been reduced. That's not to say there aren't instances of nasty flareups. Last night for example, I was awoken by my head pounding. I don't recall it having TMD complications, but I went ahead and put in my TMD occlusive devices anyway; then took a T3 to manage the pain. When I woke up today the headache was reduced.
That's about all for today. Not much info to cover eight days; but that's my brain these days. Looking forward to a good week ahead.
Good Health to All!
ScottW
Since I don't remember many specifics, I'll have to go with generalities.
To start, overall things have been OK. Less nausea, lower headaches, less pain over the kidneys,and fewer days of just feeling awful. My appetite has also been up, taking in around 2 cups of food per day.
I don't know why the change--maybe one of those little breaks that help me to rejuvenate in advance of the next period of feeling really bad. No matter...I'm just glad that things have been a bit easier.
My sleep has been all over the place. I might get between 5-9 hours at night, then nap (or not) during the day, and then asleep again by midnight. Other nights I'm up almost all night, then only get about four hours of sleep before waking. On those days I get little sleep I try to stay awake, but rarely am able to do so; succumbing to a four or five hour nap in the early afternoon. Like I said, my sleep is all over the place. During all of this, whether sleeping well or not, any time I am awake I continue to drag as if I have zero energy. Some days I feel as if I am walking around in a stupor.
As I stated above, my headache has, overall, been reduced. That's not to say there aren't instances of nasty flareups. Last night for example, I was awoken by my head pounding. I don't recall it having TMD complications, but I went ahead and put in my TMD occlusive devices anyway; then took a T3 to manage the pain. When I woke up today the headache was reduced.
That's about all for today. Not much info to cover eight days; but that's my brain these days. Looking forward to a good week ahead.
Good Health to All!
ScottW
Thursday, November 10, 2011
Financial Planning for Your Upcoming Transplant
The following information was sent to me by Astellas Pharmaceuticals via their newsletter "The Transplant Experience." Astellas sends this info out to transplant eligible patients as a way to help prepare individuals for the journey ahead.
Planning Financially For Your Transplant
Understanding all you need to do in preparation for a transplant can be intimidating. And budgeting your finances ahead of time is a must. Fortunately, there are many resources to help you along the way.
Understand your transplant costs
Even preparing for your transplant procedure may incur significant costs. It is important to consider all potential expenses, both medical and non-medical.
*Medical costs
-Pre-transplant evaluation and lab tests
-Transplant surgery
-Post-transplant recovery and follow-up care
*Non-medical costs
-Travel, food, and lodging for visits to the transplant center
-Accommodations for a person to accompany you
-Lost wages and income while in recovery
-Child care
Fortunately, many of these expenses are foreseeable. In addition to your financial transplant coordinator, you can look to a number of financial support resources to help you outline your transplant budget.
Meet with your transplant financial coordinator
With a general understanding of what to expect, you are ready to meet with your transplant financial coordinator. This is an opportunity to have your concerns addressed and build a financial plan around your particular financial situation. Be prepared to share your insurance provider information, relevant financial documentation, and, most importantly, any questions you may have. Here are a few to get you started:
*What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc.)?
*Will my insurance require pre approval for any of my treatment?
*What is the average cost for a transplant, including care required before and after the transplant?
*Are there deductible and co-payment amounts? If yes, what are they?
*What can I do if my financial coverage runs out?
*Who will pay for my donor costs? What if I have a living donor?
(Find more questions in the Finances pages of the Support section on http://www.transplantexperience.com/!)
Plan beyond transplant
*With all the immediate concerns and events leading up to transplant, it's easy to put off one of the largest financial considerations post-transplant: your anti-rejection medications.
*Just how important are my anti-rejection medications?
**Your anti-rejection medications, as the name suggests, are critical to preventing rejection of your organ for as long as you are living with a transplant. They are tailored to your body's specific needs, so it's important that you take them exactly as intended for you by your doctor.
The day you receive your transplant should be many things—happy, humbling, heartfelt—not one filled with concern over how you will pay for your immunosuppressants. Fortunately, many pharmaceutical companies offer co-pay cards designed to reduce your medication out-of-pocket costs. Astellas Pharmaceuticals can help! Visit http://www.transplantexperience.com/ for more information.
Planning Financially For Your Transplant
Understanding all you need to do in preparation for a transplant can be intimidating. And budgeting your finances ahead of time is a must. Fortunately, there are many resources to help you along the way.
Understand your transplant costs
Even preparing for your transplant procedure may incur significant costs. It is important to consider all potential expenses, both medical and non-medical.
*Medical costs
-Pre-transplant evaluation and lab tests
-Transplant surgery
-Post-transplant recovery and follow-up care
*Non-medical costs
-Travel, food, and lodging for visits to the transplant center
-Accommodations for a person to accompany you
-Lost wages and income while in recovery
-Child care
Fortunately, many of these expenses are foreseeable. In addition to your financial transplant coordinator, you can look to a number of financial support resources to help you outline your transplant budget.
Meet with your transplant financial coordinator
With a general understanding of what to expect, you are ready to meet with your transplant financial coordinator. This is an opportunity to have your concerns addressed and build a financial plan around your particular financial situation. Be prepared to share your insurance provider information, relevant financial documentation, and, most importantly, any questions you may have. Here are a few to get you started:
*What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc.)?
*Will my insurance require pre approval for any of my treatment?
*What is the average cost for a transplant, including care required before and after the transplant?
*Are there deductible and co-payment amounts? If yes, what are they?
*What can I do if my financial coverage runs out?
*Who will pay for my donor costs? What if I have a living donor?
(Find more questions in the Finances pages of the Support section on http://www.transplantexperience.com/!)
Plan beyond transplant
*With all the immediate concerns and events leading up to transplant, it's easy to put off one of the largest financial considerations post-transplant: your anti-rejection medications.
*Just how important are my anti-rejection medications?
**Your anti-rejection medications, as the name suggests, are critical to preventing rejection of your organ for as long as you are living with a transplant. They are tailored to your body's specific needs, so it's important that you take them exactly as intended for you by your doctor.
The day you receive your transplant should be many things—happy, humbling, heartfelt—not one filled with concern over how you will pay for your immunosuppressants. Fortunately, many pharmaceutical companies offer co-pay cards designed to reduce your medication out-of-pocket costs. Astellas Pharmaceuticals can help! Visit http://www.transplantexperience.com/ for more information.
Monday, November 7, 2011
07 November 2011
Thursday finished up pretty much the same way it started..in other words, I felt lousy all day without any letup. I ended up taking a half dose of the anti-emetic in the evening. It reduced the nausea to a tolerable level, and I was able to get a little food down.
Unfortunately I was awoken again on Friday morning at 530a, so I took another full dose of Promethazine. Luckily I got back to sleep rather quickly (around 15 minutes!) and slept until nearly 1p.
Of course, on awaking I was groggy and stayed that way well into the evening. Plus, I had that ill feeling hitting all day. I ate a little by days end, and drank around 40 oz's. My headache was as prevalent as ever. My nap on Friday afternoon lasted a little over three hours. About the only good news was that the edema was nearly non-existent all day.
As a result of my late sleep on Friday, I was unable to get to sleep until after 3a on Saturday. I had nausea once again hit me in my sleep; but this time I was able to keep it under control without using meds. After waking I actually had a fairly good day, to start. The headache was minimal, the nausea reduced, edema was again low, and the nasty feeling inside was pretty quiet. Plus, I actually ate more than my usual pittance--I know...a miracle! My nap on Saturday started at 2p and I slept until 6p.
But alas, the good day was not to last. After waking at 6p everything (except the edema) came raging back. What had been a good day turned nasty. (I loved the break!) The remainder of my evening was spent dealing with lots of nausea, a headache was a solid 9, and lots of feeling sick.
I actually slept most of Saturday night through. On waking Sunday, I once again felt pretty good. The edema was still minimal. I had worn my TMD mouth guards to eliminate TMD complications on my headache, and awoke with my headache reduced to a wonderful 4. I was still nauseous, and the sick feeling inside was hitting me really hard all day. I ate one small meal in spite of everything. About the only good it did was put fuel into my body; because I felt really lousy all the rest of my day. I ended up taking a three hour nap in the evening, but awoke feeling the same way.
Because of how late my nap was I didn't get to sleep until around 430a; but awoke at 930a. I don't doubt another nap is in order later today. The good news today is that I awoke having another good start to my day. I've even had a little something to eat already. My head hurts, and I'm about to go take a T3 for it, but it will be my first dose of the day. (I'll take that!)
Anyhow, that catches me up. I thought I'd try a bit different of a format. I may or may not use it again. I'll have to read over it to decide if I like the way it turned out. So, TTFN!
Good Health to All!
ScottW
Unfortunately I was awoken again on Friday morning at 530a, so I took another full dose of Promethazine. Luckily I got back to sleep rather quickly (around 15 minutes!) and slept until nearly 1p.
Of course, on awaking I was groggy and stayed that way well into the evening. Plus, I had that ill feeling hitting all day. I ate a little by days end, and drank around 40 oz's. My headache was as prevalent as ever. My nap on Friday afternoon lasted a little over three hours. About the only good news was that the edema was nearly non-existent all day.
As a result of my late sleep on Friday, I was unable to get to sleep until after 3a on Saturday. I had nausea once again hit me in my sleep; but this time I was able to keep it under control without using meds. After waking I actually had a fairly good day, to start. The headache was minimal, the nausea reduced, edema was again low, and the nasty feeling inside was pretty quiet. Plus, I actually ate more than my usual pittance--I know...a miracle! My nap on Saturday started at 2p and I slept until 6p.
But alas, the good day was not to last. After waking at 6p everything (except the edema) came raging back. What had been a good day turned nasty. (I loved the break!) The remainder of my evening was spent dealing with lots of nausea, a headache was a solid 9, and lots of feeling sick.
I actually slept most of Saturday night through. On waking Sunday, I once again felt pretty good. The edema was still minimal. I had worn my TMD mouth guards to eliminate TMD complications on my headache, and awoke with my headache reduced to a wonderful 4. I was still nauseous, and the sick feeling inside was hitting me really hard all day. I ate one small meal in spite of everything. About the only good it did was put fuel into my body; because I felt really lousy all the rest of my day. I ended up taking a three hour nap in the evening, but awoke feeling the same way.
Because of how late my nap was I didn't get to sleep until around 430a; but awoke at 930a. I don't doubt another nap is in order later today. The good news today is that I awoke having another good start to my day. I've even had a little something to eat already. My head hurts, and I'm about to go take a T3 for it, but it will be my first dose of the day. (I'll take that!)
Anyhow, that catches me up. I thought I'd try a bit different of a format. I may or may not use it again. I'll have to read over it to decide if I like the way it turned out. So, TTFN!
Good Health to All!
ScottW
Thursday, November 3, 2011
03 November 2011
Yesterday was terrible.
I felt awful all day. It started in the middle of the night when I was awoken with intense nausea. Even a full dose of Promethazine took nearly an hour and a half to calm things down. In spite of taking the anti-emetic I still slept restlessly--the nausea breaking through anyway. After waking at 1245p I was groggy, as ususal; and this lasted for about six hours. In the mean time I had that ill feeling just slam me, and it stayed with me the rest of the day. Miserable would be an understatement. As far as eating, I had two slices of toast all day, and about 40 ounces of liquids. That's it.
My sleep last night was again restless; but I awoke feeling about 50% better. I still feel sick on the inside, but the nausea is reduced...so far. So far today I still haven't eaten, and am not hungry. My liquid intake has been precisely 12 oz's--from taking my noon-time meds.
I also awoke with my headache pounding, and feeling exhausted, as usual. I am hoping that I feel better as the day progresses.
Good Health to All!
ScottW
I felt awful all day. It started in the middle of the night when I was awoken with intense nausea. Even a full dose of Promethazine took nearly an hour and a half to calm things down. In spite of taking the anti-emetic I still slept restlessly--the nausea breaking through anyway. After waking at 1245p I was groggy, as ususal; and this lasted for about six hours. In the mean time I had that ill feeling just slam me, and it stayed with me the rest of the day. Miserable would be an understatement. As far as eating, I had two slices of toast all day, and about 40 ounces of liquids. That's it.
My sleep last night was again restless; but I awoke feeling about 50% better. I still feel sick on the inside, but the nausea is reduced...so far. So far today I still haven't eaten, and am not hungry. My liquid intake has been precisely 12 oz's--from taking my noon-time meds.
I also awoke with my headache pounding, and feeling exhausted, as usual. I am hoping that I feel better as the day progresses.
Good Health to All!
ScottW
Tuesday, November 1, 2011
01 November 2011
Well, Damn!
In spite of feeling the worst yet, there is no movement at all in any of my numbers, except my weight. I am now at243 239 pounds and dropping.
Since the numbers are so close to last time I'll not reiterate them now.
With as long as I've been stuck at 17.6%, I should be seeing another downward move soon. My next appointment is in just six weeks, so we'll see then.
One thing my doc wants me to do is weigh myself every day and adjust my diuretic intake based on the results. So, if I gain two pounds in a day, I'll take a whole dose of Bumetanide (Bumex). Conversely, if I have no weight gain [due to edemic increase], I'll take just a half dose of the Bumex. I will never take less than a half dose of the diuretic, nor any more than a whole dose.
That's all. No news is definitely not good news. C'est La Vie. (sigh!)
Good Health to All!
ScottW
In spite of feeling the worst yet, there is no movement at all in any of my numbers, except my weight. I am now at
Since the numbers are so close to last time I'll not reiterate them now.
With as long as I've been stuck at 17.6%, I should be seeing another downward move soon. My next appointment is in just six weeks, so we'll see then.
One thing my doc wants me to do is weigh myself every day and adjust my diuretic intake based on the results. So, if I gain two pounds in a day, I'll take a whole dose of Bumetanide (Bumex). Conversely, if I have no weight gain [due to edemic increase], I'll take just a half dose of the Bumex. I will never take less than a half dose of the diuretic, nor any more than a whole dose.
That's all. No news is definitely not good news. C'est La Vie. (sigh!)
Good Health to All!
ScottW
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