30 May 2012

The passage of time has become so blurred to me that the six days that have passed since my last entry literally seem as if only one or two days have gone by.

I am having a difficult time remembering details today...

I'll start with my dreams. I had about a week in which my sleep seemed restless and more insufficient than normal. Then about five nights ago I awoke from having had what for me would be nightmares. My dreams were entirely revolving around loss of control, dire situations and death. During that nights' sleep I was able to wake myself enough to be able to again insert conscious messages into my subconscious. The messages I repeated as I fell back asleep were "I control my dreams!" or, "I am in control of my dreams! My dreams do NOT control me!" The rest of that night, and ever since, I am again in complete control of my dreams, and my sleep has been more restful.

Let's see...speaking of sleep, in spite of averaging about eight hours per night, plus varying lengths of daily naps, I am still pretty much exhausted every day. About the only good thing coming out of my sleep right now is the lack of cramps in my lower legs. I haven't had any in a week now. No complaints from me on this one!

My appetite is up and down. The good news is that I have eaten every day this last week. I will admit that most of the foods I am eating are just blah in appeal and flavor; but I am able to eat...which is definitely a good thing.

The headache...how many different ways are there to say the same damned thing about this long, long, long headache. On the subject of my headache, I had to make my neurology appointment further out than I had hoped. That appointment won't happen until July 11th.

The flank pain is constantly bilateral, 24/7. There are no intensely sharp pains that I have experienced in the past; just consistent pain with positional flareups, and sensitivity to anything poking into the area.

(Sorry...just fell asleep for about twenty minutes...)

That's all I can think of. If I try anymore I'll probably fall asleep again sitting up!

Good Health to All!

ScottW

Newsletter: Keeping Up With Your Transplant Medications

The following is the latest newsletter from The Transplant Experience, the educational division of Astellas Pharmaceuticals, makers of several transplant meds. This free email newsletter is designed to educate pre and post transplant patients on the myriad information available (and necessary) for these persons. The info is extremely valuable!


"Keeping Up With Your Transplant Medications"

Even if you are awaiting a transplant, it is important to understand just how critical anti-rejection medications are to transplant health. Yet, for most of the transplant community, taking medications consistently, on time, and exactly as intended for them by their doctors can be a challenge. In fact, over half of kidney transplant recipients fail to properly take their medications as early as one year post-transplant.¹ But by learning now how to address the common challenges of taking transplant medications, you can be proactive in helping to promote a successful transplant journey ahead.

Make it a habit

When was the last time you forgot to brush your teeth or lock the house door on the way out? It’s probably difficult to imagine not remembering these aspects of your daily routine, but at some point in your life, each of these habits had to be learned and remembered. You might adopt a similar approach to managing your medications, by actively integrating your regimen into your daily routine.² As a registered member of Transplant Experience, MyMedSchedule can help you do that, and more.

How can I benefit from MyMedSchedule? MyMedSchedule is a medication reminder tool, available to registered members of Transplant Experience, that enables you to: Arrange for medication reminders to be sent by email or text message Organize your daily medications by strength, dosage, and purpose Print and save medication lists for yourself or members of the family Learn more about how MyMedSchedule can help you on your transplant journey. Visit the MyMedSchedule page under the Support section of www.TransplantExperience.com!

Plan ahead Making sure you have a steady supply of medications on hand is just as important as remembering to take them. You might consider arranging for automatic refills or setting up text and email reminders through MyMedSchedule. Or you can call in your medication refills when you complete other monthly routines, such as paying the bills. Talk to your transplant team Once you receive your transplant, your doctor may require you to take a number of medications to prevent rejection of your new organ. Although you may find this overwhelming, know that you will always have the support of the members of your transplant team. You might consider bringing a complete list of your medications the first time you see your transplant team, so they can assist you in really understanding the purpose of each medication as intended for you by your doctor. In addition, the members of your transplant team are instrumental in helping you understand how certain actions—such as taking your medications incorrectly—have consequences for your health. Their help in evaluating how consistently you've taken your medications and in developing strategies to overcome any problems you've encountered can help you improve your behavior in the future.3 By scheduling regular appointments, you will have a frequent opportunity to ask questions and learn what more you can do to proactively monitor your own health, such as evaluating your blood pressure, monitoring your urine output, and taking note of any fluctuations in your weight.

To help you further keep track of your medications, download the “My Transplant Medication Schedule” from the Helpful Downloads page of the Support section on www.TransplantExperience.com!

Not registered with Transplant Experience? Join today at www.transplantexperience.com

24 May 2012

It's been eight days again, I'm exhausted, I am not thinking well, and yesterday was a really bad day [for me]. So let's get this done...

My appetite has continued to be an issue. In the eight days since my last entry, I had three full days during which I had nothing to eat. No snacks, no nibbling, nothing. I still drank my usual fluids, but had nothing to eat. As before, the mere thought of food was making me nauseated during that stretch. Luckily, I am eating again. Food intake continues to vary; but at least I am taking in fuel every day.

The bilateral flank pain has continued to be an issue 24/7. I have again taken pain meds specifically for the flank pain.

My headache just rages on. For the most part it is averaging a good 8.5. In the last week I have had several days of that going up to a solid 10.

The edema has been worse in my feet again, and moderate in my hands. Fresh contusions are on both ankles, as well as on the sides of both feet from the edemic pressure. I've tried to get a good photo of this, but have thus far been unsuccessful. If I get a good photo of my ankles I will post it here.

The ill feeling has been consistent. Yesterday was an exception to that as it reared up and hit me especially hard all day. Combined with the headache, flank pain, edema, and exhaustion added up to a, well...sucky day.

On the good side of everything, I am still doing well mentally, there is no blood in my urine, no ammonia crystallization, no obvious S/S's of any other systems being impacted, I am progressing nicely on my personal projects, and the vertigo remains suppressed from what it had been doing.

(I've been sitting here for ten minutes trying to focus on getting this done, but have completely forgotten whatever else I wanted to say.)

Good Health To All!

ScottW

Pre-Transplant Workup--Opthamology Exam

Today was the first of my pre-transplant exams in the workup routine.

I saw an Opthamologist (NOT an optometrist!) because the exam must be in depth and look at everything in and around the eyes. Additionally, we are trying to find a possible reason for the now 30 month long headache that continues to rage on.

Here are the results:

-My eyes are 20/20 R, and 20/25 L. I don't really have to have any correction for the vision, but was given a prescription anyhow.
-My Ocular Divergence has a deviation of 34--whatever that represents--but is otherwise unchanged since it was first diagnosed.
-Lenses are clear.
-No sign of cataracts.
-Vitreous Humor is clear.
-Optic Nerves are clear and undamaged.
-Rods and Cones are healthy.
-Ocular perfusion is good.
-Ocular Veins show damage caused by the kidney disease (due to BP and other factors). The damage is not severe enough to cause any issues now, or in the future. The damage could correct itself once transplant has occurred.
-There are no obvious occular causes of the headache.

The doctor stated that my vision and overall ocular health are "really good" considering my age and the advanced state of the PCKD.
I am to have annual exams from now on for keeping an 'eye' on things--pun fully intended!

So that's the first of the pre-transplant workups. I've got a neuro workup next. I will of course fill you in on how that one goes.

Good Health to All!

ScottW

*(I had something else I wanted to mention, but it has left my brain. If I think of it I will place the comment here.) 22 May 2012 150a: I remembered! As with every pre-transplant workup exam/procedure, all notes and records of said exam will be forwarded to my nephrologist for inclusion in my workup record. I am also keeping a copy of everything for myself.  sw

16 May 2012

I know it has been six days again between blogs, and I have no excuse other than that I simply forgot to write any sooner.

Today I will start off talking about my appetite; or rather, the lack of my appetite. The stretch of eating between nothing and 1.5 cups per day has continued, but only downward. In the last six days I have probably averaged.75 cups of food per day. Until yesterday, I had eaten only a few small snacks over a three day period. Food was completely unappealing and was turning my stomach just thinking about. As far as I know I did nothing to precipitate this downturn in food intake. It simply happened. Yesterday was the exception. I actually ate a whole sandwich...but nothing else all day. At least I got some food in my belly. We'll see about today. So far I am not hungry.

The lower legs cramps have continued every night. I don't know why they are happening. I know that muscle cramps are caused by a buildup of lactic acid in the muscles, usually as a result of exercising, or other similar activity. Well, since I am definitely not exercising, going hiking, etc, I don't know why my lower legs are cramping up The cramps continue to awaken me each night. Rubbing the cramps only causes terrible pain, and stretching does no good at all. The only relief I have been able to get is by using muscle relaxing topical ointments like Sportscreme or Ben Gay Rub.

The headache goes on...and on...and on...and on... (enough said about that!)

Exhaustion is constantly an issue. I know that my not eating hasn't helped make it better, but still, it is always there in everything I do. My energy depletes faster than ever. I am walking around much of the time feeling as if I will fall asleep at any moment. As has my recent history shown, even nine or ten hours of sleep do nothing to alleviate the exhaustion.

The vertigo continues to be a reduced factor in my day to day. I haven't awoken to the room spinning in a couple of months now. Turning my head has not triggered the vertigo in a while. Riding in a car is still less impactful with the new vehicle--it still gets triggered; it just takes a lot longer to do so right now. I am still having random dizziness hit me whenever I walk so I am still using my cane outside the house, and still grabbing walls inside.

Bilateral flank pain remains a consistent issue. It is always there, always spiking for no reason and is still competing with my headache for being the most painful. I have again been taking T3's specifically for my flank pain.

On the positive side I still have no obvious blood in my urine, I am not feeling as if any other physical issues are going on (such as low blood sugar, cardiac palpitations, etc), there is zero ammonia crystallization on my skin, and I am doing quite well in the whole mental battle that is raging every day. I have a few people I speak with to get things out of my head, I have this blog, and I receive regular letters and other correspondences from many friends around the world. I appreciate everyone who helps me in this area.

That's all I can remember (or think of) for today.

Good Health to All!

ScottW

10 May 2012

Has it been a week already since my last entry? Wow...then let's get started...

Unfortunately, I am feeling rather lousy today, so this entry will be a bit perfunctory in overall dialogue.

My headache continues without a break. (No surprise there.)

My energy seems to have improved slightly.

The vertigo remains decreased. (A very welcome development.)

My appetite is all over the place ranging from nothing at all to 1.5 cups.

The ill feeling has been OK lately. Nothing too bad.

Edema has increased again, though not serious yet.

My sleep is totally out of whack. I am getting between 4-8 hours at night, then naps that range from 0-3 hours during the day.

The bilateral flank pain has been about 25% better this last week. No idea why, but no complaints about it, though.

My urine remains excessively odoriferous, and foamy. Nothing untoward however.

I am having lots of cramps in both lower legs at night. They have woken me, kept me from sleeping and the muscles are painful even when awake.

Nausea has been up this whole last week; but has been 100% controllable with the help of the Promethazine.

That's all I can think of today.

Good Health to All!

ScottW

03 May 2012

A lot of time has passed since my last update. This is partially due to my being away from my computer for five days, as well as feeling really lousy for two more. We'll get to that later...

From the 25th through the 28th things were about normal for everything in regards to the S/S's. In other words, relentless headache, lots of flank pain, lots of peripheral edema (x4), nausea, etc. My energy seemed to be a bit better, as was my appetite. My sleep was all over the place though, and I had no idea why that would be.

On the evening of Saturday the 28th, I began a 3.5 day slide that was not fun. I began having uncontrolled diarrhea for no apparent reason. There were no special environmental changes, I didn't feel sick (like the flu), etc. It just started. By Sunday morning I had had 15 episodes in all--I know...I kept track. Full OTC doses of Imodium did nothing to abate the diarrhea either on Saturday or Sunday. Meanwhile, my flank pain had increased, my headache spiked to a solid 10, and my urine was incredibly smelly.

By the time Sunday night rolled around, I'd had 24 episodes, my skin was turning gray, and I had zero energy. I was still not feeling like I had the flu, or anything else untoward. On Monday I decided to drink a half gallon (in total) of Smart Water, and eat nothing at all. By Monday evening, the diarrheal episodes had decreased in number to only 32 total. By Tuesday evening I still had eaten nothing, and the total episodes had dropped to only three more. As of tonight (late on the 2nd), I have had zero diarrhea all day, and have not even felt like it was developing.

So, it is finally over. Again, I have no idea as to the why of it. I do have a theory, however. That is that my body is trying to compensate for all the water it was carrying. It is possible that my body was simply discharging lots of edemic increase that my dying kidneys could not filter out. That theory is in no way legitimized by any physician opinion. It is only my surmising one possible explanation.

However, as of this evening, the edema in both my legs and arms is decreased by about 70%.

Because of how I was feeling yesterday I did not get back to my chiropractor to further treat my R shoulder. Hopefully I will be able to get in soon.

The only other thing I want to report is that the bilateral flank pain is worse tonight than it has been in some time. I could even say it is competing with the headache for top pain producer. Bed awaits though, so maybe by the time I awaken the flank pain will have reduced.

That's all I can remember tonight.

Good Health to All!

ScottW

Newsletter: Oral Health

Here is the latest edition of The Transplant Experience, an educational division of Astellas Phamaceuticals that teaches pre and post transplant patients about the confusing process that awaits anyone needing an organ transplant.


Oral Health Before Your Transplant

"A key component of long-term transplant success is taking care of your whole body—this includes making oral health a priority as you set out on your transplant journey.

What does dental hygiene have to do with my transplant?

When you receive your transplant, you will need to protect it by taking immunosuppressants. These medications work to prevent rejection of your new organ by suppressing the body's immune response, which unfortunately increases your risk of infection—including oral infection. An infection that starts in the mouth can eventually end up in the bloodstream, where it could begin to endanger your transplant.¹ Since your oral health is built from years of maintenance and care, it is never too early to start minimizing this risk of oral infection—even as you await transplant.

What steps do I need to take before transplant?

Because of the increased risk for infection you will face post-transplant, take care of as many dental issues as possible before transplantation; in particular, tend to bleeding gums or cavities, which may lead to an infection down the road.² As part of your pre-transplant evaluations, you will be required to complete an oral health examination in the months before transplantation.

What steps do I need to prepare for after transplant? Post-transplant, it is important to keep all healthcare professionals up-to-date on any medical care you receive, including dental care. Be sure to inform your transplant team of any procedure that may aggravate your gums—such as a tooth pulling or a dental cleaning—as you may need to take antibiotics to guard against possible infection. You may need to coordinate with both your dentist and transplant team to ensure none of the medications that you're currently taking will interfere with the antibiotics you may need for the procedure. In fact, you should inform all healthcare professionals that you are a transplant recipient. They may have additional advice or tips you can include in your daily oral-health routine. What can I do to promote good oral health? The importance of initiating good oral hygiene habits early cannot be overemphasized. The following steps are recommended by the American Dental Association (ADA) • Brush your teeth twice daily with a fluoride toothpaste • Floss once daily • Replace your toothbrush every three to four months • Visit your dentist regularly After you receive your transplant, get in the habit of checking your mouth and gums daily for white or red patches, dryness, lumps, bleeding gums, sores, or ulcers. If you notice any such issues, contact your dentist immediately, so these can be investigated and addressed early. What role does my diet before transplant have on my oral health after transplant? You probably already know that it's best to stay away from “sticky” foods—like candies, dried fruits, and chewing gum—which are associated with tooth decay, and that simple carbohydrates—often found in cookies, pasta, and white breads—can generate acid-releasing plaque known to wear away at the enamel. But a balanced diet can play a significant role in strengthening your oral health, too: • Fruits and vegetables are good sources of vitamin C and folic acid, important for maintaining healthy gums; they are also high in fiber, which can help prevent the buildup of plaque in your mouth • Fish, poultry, lean meats, and beans are high in protein, which is vital for tissue growth and repair, such as healing wounds in your mouth • Whole grain bread, cereal, and rice are good sources of iron and vitamin B, which are vital for blood and oral circulation • Water throughout the day can help prevent plaque growth Turning your commitment to good oral health into daily practice is just one important way you can make the larger commitment to your transplant health—for a long and successful journey ahead.

Learn more about post-transplant oral health by visiting the “Your Oral Health” page under the Healthy Body section of www.TransplantExperience.com! You can subscribe to this newsletter by visiting www.transplantexperience.com. I have found this information to be invaluable; and you will, too!