Newsletter: New Hope For Living Donor Transplantation

(I'm almost caught up with the back issues of these...)

Here in another newsletter from The Transplant Experience, an educational and public relations division of Astellas Pharmaceuticals. These free newsletters are intended to educate potential and post-transplant patients regarding the [often] confusing process of this life-altering journey.

"New Hope For Living Donor Transplantation"

Meet Dr. John Friedewald, MDChair, United Network for Organ Sharing (UNOS) Kidney Committee
Former Chair, UNOS Kidney Paired Donation Workgroup
Associate Professor, Northwestern University, Division of Nephrology

If you are awaiting a new kidney, you may wish to consider living donor transplantation—an option which, in reducing your wait pre-transplant, may also increase your potential for long-term success post-transplant.^1-3 And now, living donor transplantation may be more accessible to more people in need. Just ask Dr. John Friedewald, a nephrologist and chair of the UNOS Kidney Committee, who couldn’t be more excited about the UNOS Kidney Paired Donation (KPD) Pilot Program and the positive impact it can bring to the transplant community.

What is kidney paired donation?

Perhaps a family member, a friend, or even a kindhearted stranger wishes to donate a kidney to you, but you are an incompatible donor-recipient match. Given the specificity of antibody matching, this is not an uncommon situation. KPD works by finding compatible donor-recipient matches among incompatible pairs nationwide—“enabling an exchange and a transplant that is otherwise not possible,” says Dr. Friedewald.

How does the UNOS KPD Program work? Since 2007, local and regional organizations have made well over 700 transplantations possible through KPD.4 The main challenge for these local organizations, however, is the lack of a large, centralized database for pairing individuals, especially the hard-to-match ones. When the UNOS KPD Pilot Program launched in October of last year, the organization aimed to bypass this challenge by connecting all of the individual transplant centers through one system. This is the program's main strength, says Dr. Friedewald—as the first to draw from a national pool of applicants across multiple transplant programs, while coordinated under the oversight of UNOS, it is the first to offer real potential in influencing transplantation at the national level. He cannot emphasize enough the inspiring implications of this program: “As long as you have an interested and healthy living donor, KPD can almost always make an incompatible match work for the donors and recipients involved.”

How can I participate in the UNOS KPD Program? Although the KPD process can be complicated, your transplant team and program coordinators will take care of most of the legwork4: 1. You and your living donor can start by contacting one of the 77 transplant centers participating in the pilot program. Medical screening and evaluation are necessary for approval of your application 2. Your transplant center will submit your paperwork through one of the four UNOS coordinating centers, which will then process your information into the KPD database 3. The KPD database then performs a highly sophisticated algorithm to determine your “virtual match” to a potential living donor 4. Both you and your potential donor will be asked by your respective transplant centers for a final crossmatch—a blood analysis to confirm donor-recipient compatibility 5. If the final crossmatch confirms the virtual match, you and your potential donor will have about two weeks to schedule and prepare for the transplant procedure

To learn more about the UNOS KPD Program, and how it has changed people‘s lives, you can read “Expanding the possibilities: first KPD transplants performed as result of national pilot program.” “To be able to offer patients with end-stage kidney disease such significant improvements to their quality of life”—this is what motivated Dr. Friedewald to enter the transplant field. As the UNOS KPD Pilot Program transitions in the coming months to a full-time program, he is again inspired by the promise of this possibility.

For more information on becoming a living donor and the living donation process, download the “Sharing Life” and “Starting the Conversation” booklets off the Helpful Downloads page under the Support section of www.TransplantExperience.com.

Not registered with Transplant Experience? Join today.

Lucas and Juno: Special bond of a rescue dog and dying boy

This story is absolutely amazing. Please read his. It will bring a new meaning to the term, "Man's best friend."

Lucas and Juno: Special bond of a rescue dog and dying boy

27 January 2012

A week has passed by already, so let's get to it...

LOTS of painful headaches. It seems that this sustained high pain level in my headaches won't yet go away. I wake with them, conduct my days with them, and go to sleep with my head just pounding. (blech!)

The peripheral edema has been consistently lower. It never goes away, mind you; but it has not had a serious explosion of swelling in a while now.

My urinary flow and characteristics remain the same as they have for the last number of weeks. Still no overt signs of blood, kidney stones, etc.

My breath is as horrid as ever. It reeks of ammonia. I can still smell it (the ammonia), too, at its increased intensity. Breathing in or out, it is nastily pungent.

The flank pain is constant. There have been no sudden flare ups this week.

My appetite has been about average. The only noticeable change is that the frequency of feeling ill after eating seems to be constant. Even if I don't get nauseated--which is rare--, that same ill feeling hits about five minutes or so after eating. Nothing makes it go away but time...and a lot of patience.

As has been previously, my eyesight goes from great to bad depending on how I'm feeling on any given day. Yesterday was terrible; whereas today is much better. No rhyme or reason to this, as far as I can tell.

The daily exhaustion I feel has been awful. My nightly sleep hours have been all over the place, ranging between 4.5-9 hours per night. Then, my daily naps have also been wacko with averages ranging between 2-5 hours with no consistency. The other day I got a total of 17 hours of sleep (in twenty four), and still walked around in a fog. Yet, when I get only eight hours (in total), I go about my day just as exhausted.

The cramping in my lower legs has been improved (yay!!!). This past week I have not had a single episode of being awoken with the cramping. I have had a few leg and foot cramps come on while awake, but even these have not been as rigid or intense.

My body has been cold all the time. I am wearing a coat and fleece anytime I go out and about; even when indoors. Most of the time around the house I am wearing my fleece and my warm booties. When I go too long without adequately warming my feet, they (my feet) turn blue from the heals to the toes.

My AV Fistula continues to strengthen. The pulse at the junction is incredibly strong. So much so that I can feel the pulse of it throughout my hand, and up into my bicep. Also, I am finding that even bending my elbow tightly for more than a few seconds has an adverse affect on the fistula. Doing so apparently occludes the super vein enough that I actually feel pain along my arm. Once I release the pressure (by unbending my elbow), the pain is gone. This same feeling also happens if I put too much pressure on the vein itself (or anywhere along its length). No wonder the doctor warned of no blood pressure readings on that arm. One fascinating thing for me is that I can see the pulse of each heart beat along the length of the fistula. Pretty cool; in a...former paramedic...kind or way.  :o)

Anyhow, that's all. I don't remember anything else I wanted to pass along. Have a great week, everybody!

Good Health to All!

ScottW

Newsletter: Emotional Health Before Your Transplant

The following is from The Transplant Experience, an educational division of Astellas Pharmaceuticals. These free newsletters are aimed at pre and post-transplant patients, and are full of valuable information. You can join for free at www.transplant experience.com.

"Emotional Health Before Your Transplant"

 

Despite the hope one feels prior to a transplant and the gratitude one feels afterward, many individuals battle depression throughout their transplant journey. It is important to know that you can turn to your transplant team for help, no matter what you're feeling. In observance of Seasonal Depression Awareness Month this December, take a moment to recognize and understand the challenges of depression—and discover ways to help yourself and others.

What is depression?

Depression is more than a lingering sadness, but an outlook that can affect your emotional and physical well-being. Seasonal depression, also known as seasonal affective disorder (SAD), is a subset of depression that typically arises during the dark winter months.¹ Symptoms of depression can include any of the following²:

• Feelings of restlessness, worthlessness, or guilt
• Fluctuations in weight or sleep
• Trouble concentrating
• Reduced energy throughout the day
• Lack of pleasure in activities you once enjoyed

While these are the most common symptoms, everybody experiences depression a little differently—in ways that are difficult to measure and caused by reasons even more difficult to categorize.3 Adding to this complexity are assumptions made by many that aim to simplify depression: Misconception #1: Depression is just a matter of perception. Depression can affect how you feel emotionally, but may be grounded in real, chemical imbalances in the brain. Depression has been found to affect the body as well as emotions, influencing physical recovery and rehabilitation from surgeries, such as a transplant procedure. For these reasons, depression may sometimes require you to seek professional help and take medication, as any health condition would. Misconception #2: Depression affects weak individuals. Depression can affect anyone overwhelmed by stressful changes in one's life. Your transplant journey, especially, is full of these stressful, if not life-altering, changes. Anticipating a new organ, adjusting one's life around transplantation, learning to become more dependent on others—all can understandably lead to depression. Misconception #3: Depression can be cured with positive events in one's life.    Depression, like any chronic condition, takes time to heal; no amount of good news can just “switch” off what you're feeling. In addition, it's possible that even a positive event—like a life-saving transplant procedure, despite all the inspiration and hope it may bring—requires that you adjust to yet another significant change in your life, in turn stirring up a whole new set of emotions. Understanding these complexities may help you accept depression for what it is: an attempt to make sense of significant changes in one's life.

Managing depression Outside of medication and therapy, there are a number of things you can do to manage your depression: 1. Talk to others. Whether it's your transplant team, a member of the transplant community, or friends and family—a little social support can go a long way.2,3 Join a support group in your area. The Support group locator tool on www.TransplantExperience.com.

2. Exercise. Physical activity promotes mental health by releasing natural mood boosters in the brain. For tips on exercising responsibly after transplantation, visit the Exercise page under the Living Healthy section of www.TransplantExperience.com. 3. Eat well. Fruits, vegetables, and other wholesome foods can boost energy levels and help your body feel healthy and vibrant. Visit the Recipes for Success page under the Living Healthy section of www.TransplantExperience.com. 4. Create a brighter environment for yourself. A little sunshine can go a long way. Spend some time outside each day, or at least make it a point to let some natural light indoors.1 5. Do things in stages. Breaking up one large task into smaller ones can make your time more manageable and your goals more attainable.3 6. Find a creative outlet. Even thinking about all the changes in your life can be overwhelming. You might consider taking up activities like painting, knitting, or writing to give your mind a much-deserved break. In fact, some experts say creative expression can be a form of therapy.2

Hear from people at different stages in the transplant journey. Watch the “Voices of Experience” video, located under the Support section of www.TransplantExperience.com!

Not registered with Transplant Experience? Join today.

Newsletter: Preventative Care and Your Transplant

The following newsletter again comes from The Transplant Experience, an educational division of Astellas Pharmaceuticals. These newsletters are sent out to prospective and current transplant patients in hopes of providing helpful information for individuals going through this life-changing journey.

"Preventative Care and Your Transplant"

A transplant is an amazing gift that deserves to be honored in every way possible. This means making a commitment to protecting your transplant.

Help Prevent Transplant Rejection

As amazing as your immune system is, it unfortunately can't tell the difference between a harmful germ and a life-saving transplant. For this reason, you must take immunosuppressants to prevent your body from attacking your new organ. Taking them diligently, as intended for you by your doctor, is one of the most important ways you can help ensure the long-term success of your transplant.

Help to Prevent Skin Cancer

In addition to increasing your chance of infection, your immunosuppressants may increase your risk of cancer—particularly, skin cancer. In fact, compared to the general population, transplant recipients are 65-250 times more likely to develop non-melanoma skin cancer and 2-8 times more likely to develop melanoma skin cancer.¹ Fortunately, it's easy to learn the signs of skin cancer and the steps you can take to lower your risk. Visit the Your Skin page under the Healthy Body section of TransplantExperience.com!

Help Prevent Infection

Because your immunosuppressants work to suppress your immune response, you may be at increased risk for developing certain infections. For certain infections, vaccines provide a critical line of defense against this possibility of infection. If you are currently living with a transplant, keeping up with your vaccinations will help you fight new and changing viruses. Early vaccination pre-transplant is key to fighting certain infections well into the years post-transplant.

Vaccines come in either live form or inactivated form; some (eg, flu shots) are available both ways. Administration of live vaccines post-transplant is considered risky, and usually not recommended; ideally, you will have completed them at least four weeks prior to your transplant procedure. Depending on the amount of time scheduled before your transplantation, you may wish to work with your doctor to develop an optimal vaccination strategy. If necessary, inactivated vaccines can be administered after your transplant procedure, along with your annual post-transplant vaccinations. Here are some vaccines commonly recommended pre- and post-transplant:

	Most relevant vaccines are of the inactivated kind, but if you are traveling outside of the country, working or living in areas of high exposure to certain pathogens, or are a child, you may need to receive additional vaccines, typically of the live form. Be sure to share this kind of information with your transplant team when reviewing your immunization records together for the first time.
	Coverage for your vaccinations Your vaccinations are recognized as a critical part of your transplant health, and are likely to be at least partly covered under your health insurance. Since every health plan is different, ask your insurance provider directly about the immunization benefit specific to your plan. If you are covered under Medicare Part B, however, know that you can receive the following vaccines as part of your preventative benefit3: Hepatitis B Pneumococcal Seasonal influenza
	Even with your vaccinations in order, it is important to help fight infection by adopting a few common sense practices after transplantation and learning to identify the signs of infection early. Visit the Watching for Infection page under the Healthy Body section of TransplantExperience.com!
	For more tips on leading a healthy lifestyle, visit the Helpful Downloads page under the Support section of TransplantExperience.com for booklets on the following topics:

20 January 2012

The past two days have been ridiculous.

Wednesday started out alright, bu by mid afternoon I had a sudden onset of severe nausea, became so dizzy I almost couldn't stand, had my headache literally shoot from an 8 to a 10 within about five minutes, and then felt that ill feeling more intensely than I had yet experienced. I felt like this the rest of the day. I ended up taking a four hour nap in the early evening, and awoke terribly groggy (from the Promethazine I took earlier [for the nausea]), and didn't eat at all. I slept poorly--to put it mildly--and awoke with my head still raging.

As you might guess, I was this way all of Thursday as well. I did take a three+ hour nap in the early afternoon, and again awoke feeling the same. As the evening progressed I started feeling better; though not great by any means. I ended up falling asleep shortly after midnight, and slept until 830a this morning.

When I awoke the nausea was way down, the dizziness reduced, and the ill feeling, too. The headache, however, had come down to a nine only; but at least it wasn't where it had been the two previous days.

I don't know why I suddenly felt so awful. I have no temp (either high or sub), no sniffles, no DIB (difficulty in breathing), nothing. Whatever it was just seemed to slam me out of left field. Let's hope that doesn't happen again!

I'll let you know...

Good Health to All!

ScottW

17 January 2012

I can't believe it's already been a week since my last entry. Time just flies when one day blends into the next week...

Let's begin with feeling ill. There has been lots of this. That yucky ill feeling has been up and down in its intensity; and today is particularly bad. As far as I'm aware nothing I do exacerbates or initiates it. When it is bad, it makes all the other S/S's seem worse.

The now 26 month-long headache has been nothing but really bad. In fact, the evening after posting my last blog (on the 10th, I think) saw a sudden increase of the headache; and it has yet to back off. My TMD occlusive devices have done no good to alleviate the pain, so I know that my TMD is not involved.  The headache has woken me from sleep several times, and has kept me awake as well.

The flank pain (over both kidneys) has been constant. Quality and intensity has varied only slightly. There have been no sudden, sharp pains--which is good.

The peripheral edema has been going through its normal cycle every day. Extreme edema has not been a factor, however...just the [now] normal swelling all day, followed by reduced edema by morning, lots of voiding, and start all over. My ankles look like a mess of broken capillaries--all purple and ugly.

My sleep continues to be unpredictable. I am averaging between 6-9 hours per night, and 2-5 hours of naps every day. Last week I had a day where I got a solid nine hours sleep, was up for three hours, then fell asleep again for another five. I still went to sleep that night by midnight and slept another seven hours. Which means, over a thirty hour period I got a total of 21 hours of sleep. After all of that, I was still exhausted!

My appetite has been inconsistent as well. On my birthday I actually ate well over my normal intake amount; but then turned around and ate only about a half cup of food the next day. I estimate that I am currently averaging about 1.25 cups of food intake per day, plus around 40 oz's of liquids.

The ammonia smell has been really nasty. I often sense so much ammonia that it's as if someone has put a bowl of it under my nose. Of course, the increased smell has further dulled my ability to smell or even taste foods. Kinda ruins my ability to enjoy what foods I do eat. More and more I eat because I need the fuel; and less because it smells or tastes good. Oh well.

My hands and feet have been extremely cold the past week. In spite of a house temp in the low 70's, I am always in a fleece jacket and either under a blanket, or have my warm booties on. Even then I still get cold. My being cold in bed is no longer an issue since my son gave me a nice electric blanket. Ahh!  :o)

The cramping in my lower legs continues. I still haven't found anything to stop it. My calves ache all the time from the constant cramping. About the only good news on this front is that my toes are not going into spasms. Those really hurt!

Another good bit of news is that that string of days with diarrhea is over...for the moment. As with its onset, I don't know the why of it; but you'll find no complaints about it stopping from me!

My urine output is still consistent (damn!), as are the characteristics of it. I still have zero indications of kidney stones, or overt signs of blood from my kidneys. There is not yet any sign of ammonia crystallization on my skin.

Lastly, my energy level seems to be decreasing every day. I get less and less done, and feel more and more exhausted. One of the reasons I take so long to get to my blog is because of feeling like I have no energy. My brain says, "Get it done!" My body says, "Umm...No."   :o)

That is it for today. I won't even try to remember what else I wanted to tell you.

Good Health to All!

ScottW

Reminder

To My Readers:

Please keep in mind that this blog reflects my journey through the process of PCKD advancement, dialysis, transplant and post-transplant life.

My journey is in no way indicative of the typical or average PCKD experience. Any treatments, procedures, meds, etc have been cleared by my doctors.

How your body reacts to the disease, any medications and associated S/S's (Signs and Symptoms) is a purely individual experience. Always follow your doctors advice. Discuss any variations from your treatment with your doctor before starting.

Thank you for your continued support, and for following me on this journey.

ScottW 

Newsletter: Switching Medication

The following newsletter comes from The Transplant Experience, a division of Astellas Pharmaceuticals. The newsletters are full of valuable information for individuals facing prospective organ transplants. The information is a free service of Astellas Pharmaceuticals.

"What You Need to Know about Medication Switching"

If you are on prescription medications, you may be asked if you'd like to switch from the brand name drug to its generic alternative. Before you make any decisions, though, you may consider why the medical community advocates for greater transparency about medication switching. Understanding Immunosuppressants Immunosuppressant regimens are customized specifically to your body's needs. Your doctor will monitor your drug levels regularly to make sure you have the proper amount in your body—preventing the rejection of your transplanted organ, while controlling for side effects.1 When it comes to selecting the formulations right for you, your doctor may want you to take a brand name drug for some medications and a generic drug for others. You should not make any switches without your doctor's guidance. Understanding Brand and Generic Formulations Generic medications have the same active ingredients as their brand counterparts, but may have differences in their inactive ingredients.2,3 Otherwise, both brand and generic medications have been determined by the FDA to demonstrate the same standards of strength, purity, effectiveness, and quality controls. How Could Switching Formulations Affect You? Any one brand name drug may have multiple generic alternatives, each with a different set of inactive ingredients. But since different generics for the same brand name medication can be freely substituted for one another, you may receive a generic from one manufacturer at one refill, and a different generic from another manufacturer at another refill. There is no guarantee, however, that these two different generics will behave the same way in your body. Your doctor may want you to take a brand name medication. Remaining on the brand name drug is the only way to make sure that you are receiving the same formulation at every refill. If this is your doctor's preference, your prescription will need to be protected with state-specific language, such as "do not substitute." Additionally you have the right to tell your doctor and pharmacist that you do not want your medication switched. In most cases, pharmacists or pharmacy personnel are not required to tell you if they decide to switch from one formulation to another.

Cost Savings as a Reason for Medication Switching It is often assumed that switching brand name medications for generic alternatives cuts costs.2,5 If your doctor wants you to stay on the brand name medication, most drug manufacturers offer prescription co-pay cards or other programs to help alleviate brand name medication costs. Be sure to discuss all your options with your doctor and transplant team.

12 January 2012

Some very good news yesterday.

I received word that my appeal for disability status was approved by a US District Court Judge due to advanced kidney disease and associated complications and limitations.

This means that I will soon be under Medicare coverage, and I can start doing the pre-transplant workup without incurring all the costs myself. Plus, I can get those two tests my nephrologist wants me to do (Neuro and Apnea).

What a relief! Nothing like a bit of good news to perk up your day!

Good Health to All!

ScottW

10 January 2012

An eventful few days since my last entry.

To start, the day of my last entry I had noted that my headache was decreased somewhat. Well, later that day it came roaring back with a solid performance in the range of 9-9.5. Since then, it has been up and down. Along with that movement has been a like movement of T3 usage--so no daily average...at least over the last five days.

My nausea has also taking a tick upward. I was again awoken from my sleep with intense nausea. I took a full dose of Promethazine. It took away the nausea, made me sleep a solid nine hours, then left me feeling groggy and sleepy all day (I took a three hour nap after being awake for just three hours--so twelve hours of sleep over a fifteen hour period).

The cramping I had in my legs last week continues. My left leg seems to have more cramping going on than in the right, but both are really sore from the constant muscle seizing. Stretching does nothing but exacerbate the problem, so I am just trying to keep my legs warm to try and reduce the cramping. So far, my efforts have resulted in minimal positive effects. The affected areas of both legs include the feet (toes too!), ankles, calves shins and upper tib/fib region.

The flank pain continues to be a problem with constant pain. About the only good news on this front is that I am not having any sudden flareups of intense pain.

And that's all I can think of. I'm forgetting something important that I wanted to mention. If I remember, I'll place it at the bottom of this entry.

Good Health to All!

ScottW

05 January 2012

Welcome to 2012!

Just like my last entry [post Christmas], it's been too long since I last wrote; so let's get going...

Increased and sustained nausea has been an issue. I am still getting sick every time I eat; but what has increased is the incidences of nausea hitting me out of nowhere. I have continued to take at least a small dose of Promethazine every day. I have also been taking other small doses daily as the nausea dictates. Luckily I am keeping it under control, so emesis is not a strong possibility. However, the increased usage of the anti-emetic has left me groggier and more blah than usual (which has been part of why this entry has taken so long to start).

My sleep continues to literally be all over the place. I haven gotten any consistent sleep hours in weeks, and my daily naps have also been varying in number, length and quality. On average, I've been getting total sleep of about 11.5-13 hours of sleep per day...and still feeling exhausted when I am awake.

My dreams continue to revolve around control. Most times I end up having no control of my dreams. The difference now is that I no longer fear the loss of control over my subconscious like I did only recently. I have come to accept that my mind is only trying to sort everything out; and the stress of so many unknowns on my subconscious mind will take its toll. I have only to weather that process, and keep myself on as even a keel as possible. I still work every day to keep my mind in a good place, but this personal observation has made that task a little easier.

The bilateral flank pain has been up and down. When it flares up, it stays for days without relief. When it is reduced, I enjoy the break...like I am today.

The headache and its ever-present and very intense pain continues on uninterrupted. Let's see...it's now at 25.5 months in duration, and counting. The only good news on this front is that it has actually reduced its average pain level to a wholly refreshing 7.5-8.0 with intermittent (and unpredictable) flareups. I'll definitely take the "break."

The period of my daily diarrhea episodes seems to be over. I don't recall when it started, but it ended a couple of days ago. I am very glad for this improvement.

Edema has been up and down. It is never gone from either my hands or my feet these days; it just varies as to how much water is being retained in the tissues. I did observe something interesting last weekend. On Sunday I was ridiculously thirsty all day. No matter how much I drank, I was still wanting more. Of course, the more I drank, the greater the edema became. Still, I would have expected the opposite to occur--you know, increased edema and no craving for liquids; or, decreased edema and increased craving for liquids--but this was not the case. Then, my urinary output was no greater than usual. Interesting.

And speaking of urinary output, this too has been fairly consistent in volume, color and other characteristics. There still is no overt evidence of blood in my urine, nor have I had any indication of kidney stone development.

Vertigo remains a daily issue. I now haven't driven a car in over a year because of its prevalence. No sense in risking an accident due to sudden spinning or general dizziness. My use of a cane when outside the home still saves me from ground level falls with increasing frequency. Inside the home, I am grabbing doors, counters and walls to steady myself more and more. My family has noticed this, too. I still am not sure if the vertigo is the result of the disease, the meds, or a combination of both. I am only trying to deal with it as best I can. The worst part of the vertigo is when I have it in my dreams--a thing which has happened numerous times the last few weeks. I awaken to a spinning room, and with intense nausea. It is not a fun thing to awaken to.

That's all I can think of today. My next entry will not be so many days later.

Good Health to You All in 2012!

ScottW