Kidney Transplant is 15 Today


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Fifteen years ago (Actually started on 8/15 and ending on 8/16) I was notified while hooked up to a dialysis machine in Omaha, Nebraska, that I was a possible match for a cadaver kidney for transplantation. I remember I was feeling so worn out and tired. I was 135 pounds, at 5’9″, more skeletal than anything. The ride to the University of Nebraska Medical Center was a short one from the Dialysis Clinic I was at in North Omaha. The past year I had been through all the testing (and wow, do they test!). There were lung scans, lung capacity tests, endless blood tests, treadmill tests, tissue biopsies and so on.

When I met the transplant team, they were all excited, saying that I was actually 7th in line for the transplant. Out of all the patients, I was ‘the closest match possible’ and that I matched the blood and tissue types almost perfectly, an astronomical percentage. I was so dazed that I could barely keep up with what was going on around me.

About 12 hours later, I woke up in some ICU ward, with a catheter coming out my penis to a bag. It would be the first time my body produced urine in over two years. I describe how I felt coming out of anesthesia and surgery in my short biography, Silver Linings on Dark Clouds, links found on my website, brickoneil.com.

Fifteen years later, my kidney, which I named Oswald Cobblepot (after Danny Devito brilliant performance as the Penguin). I just loved the name and his portrayal. Oswald and I have been through many moves from state to state, city to city. We’ve been through two serious boyfriends and two husbands. Oswald is pockmarked, striated and has tumors, but still going strong. I’ve been on body harming immunosuppressants to keep my body from attacking the foreign object, which led to other, harmful medications with other side effects, just to stay alive.

Has life been easy the past 15 years? No. Has life been worth it the past 15 years? Depending on the day, to be honest. Life after transplantation isn’t easy nor is it for everyone. Would I do it all over again? Probably not. I had the choice whether to live or not when my native kidneys failed in 2001 and I chose to live.

So Happy Birthday to little Oswald Cobblepot!

Looking For A New Place


So, I’m looking for a new place to live in a short time frame.  Here’s what I’ve found out.  For those suggesting craigslist for roomshares/rooms for rent, here is what is happening:

 

1. BOTS-a great sounding apartment with reasonable rent. You send a message and get a link to apply for a rental service/website. SCAM.

 

2. Application Collectors-people doing market research asking you to fill out an application for a non-existent apartments.

 

3. Exorbitant Rents-asking as much for their room as most complexes ask for a month’s rent.

 

4. Out-of-the-way Places-hidden places where there is no bus service, no stores for 50 miles.

 

5. Asking Huge Application fees and Deposits/First/Last-seriously, are you King George? These people feel they are the Universe’s gift to renters and ask for huge deposits to rent a single room.

 

6. Say “Females Only”-Because men are the boogeyman.

 

7. Renter Cleans Up-they’re just looking for a maid for less than what one would cost.

 

8. In-Kind Service-Babysit, elder care, housework, etc. Again, looking for lower cost slave.

 

9. Nosy Nellies-want to inspect your room anytime they damn well please, go through your belongings at their whim.
10. Actual room for rent, no app fees/deposit, lets you have your privacy, no hidden rules or maid service expected. RARE!

I’m low-income, being on SSDI so my options are limited to 30% of area income and subsidized housing. There are so many in my shoes and so few affordable housing that any studio apartment opening is gone in a matter of minutes. I’m nearly deaf, so I cannot call. By the time I try to set up an online phone call, the apartment is gone.  There are a few websites dedicated to L-I housing but they rarely list email addresses, only phone numbers. If they do list email addresses, 90% of apartment managers ignore them. So i’m in a stuck spot–I need to move by December 31st but nothing is happening. I’ve spent weeks emailing 12-16 hours each day and getting frustrated. I cannot be homeless–I have a kidney transplant that is starting to fail, I have heart issues and I’m nearly deaf. And no one seems to care.Blue Hydrangeas

Healthy Thursday: Happy Healthy Birthday to Me!


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Today is my 46th birthday and my kidney’s 12th birthday! I”m lucky and thankful to be alive, thanks to the donor family, thanks to all these years of healthy eating (yes, i’m shamelessly plugging Simple Healthy Fresh), exercise and, sometimes, thanks in-spite-of all the years of doctors, healthcare, surgeries, procedures, broken bones, heart surgery-i’m here.

I may be bruised, scarred and have skidded to 46 but i’m grateful for everything that has brought me here. Through kidney failure, kidney transplant, broken bones, seizures, heart stents (I am that age, afterall), colon cancer scare, just to name a few things that have brought me here.  I’ve also done quite a bit with my extra time! I’ve written ten books, a Mystery series, a cookbook series, an autobiography, several short stories, all of which I am proud. I’ve found the exercise routine that works for  me. I have healthcare that keeps the kidney alive, and by proxy, me. I’ve loved, lost and loved again. I’ve found happiness, I’m content with what I have.

So my birthday wish, is for all the health, happiness and contentedness to spread to all of you.

Healthy Thursday: Spring is here!


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Spring has arrived after a long rainy/snowy winter.  Seattle is typically moderate year round, but I really don’t like waking in downpours all bundled up.  The past year has been hard, medically speaking, just a cascade of health issues.  From runners knee reinjury, atypical seizures and heart stents, my weight has ballooned to 190. Being unable to exercise plus having kidney failure (even with a transplant, I’ll always be in kidney failure–transplantation is only a form of treatment, not a cure) makes walking and exercising hard, not to mention walking a mile to the Y and then working out.

So, for Spring 2014, I’m following my own previous advice in my article “How I lost 41 pounds”: start slow, eat right.  That’s it.  I’m building up my walking routine, keeping on my healthy eating (see my cookbooks) and looking at the positive side of life.  If I must, I’ll wear the knee sleeve to help support the weak muscles until they build up and not berate myself for doing more.

It’s taken me awhile to get like this and it’ll take a while to get back to health.

Healthy Thursday: Heart Disease and Height Loss


 

In keeping open with readers, fellow cooks and health aficionados, I’ve been diagnosed with coronary artery disease and as a side effect, I’ve lost more height.

As you know, if you’ve read my biography, I’ve had Alport’s Syndrome and a kidney transplant that led to different types of heart failure over the past 10-15 years. I’d been healthy, working out daily, then developed some health issues that prevented me from working out, from runners knees, dizziness/falling issues and now chest pains, which turned out to be classic angina:

  • an·gi·na
  • [ an jnə ]
  1. chest pains: a medical condition in which lack of blood to the heart causes severe chest pains

Turns out, that at least one of my arteries is 95% blocked.  The cardiologist stated that it is unusual and rare that it came on so suddenly, because the arteries were clear from a cardiac catheter that was done a few years ago. I’d noticed I’d had a hard time breathing during workouts and chest pain with exertion that just got worse with time. Now, the Dr. has given orders NOT to exercise until after the stent goes in next month.

Doing some research, I discovered that losing height is associated with heart disease in Men. I was 5’9″ way back in high school, and lost 1/4 inch per decade, it seems. Starting with the kidney failure that led to heart failure and finally heart disease.

It is disheartening to realize I’d been doing all I could do by eating healthy (I even wrote the two cookbooks on buying/cooking/eating healthy!), exercising (2-3 hours a day, even) and still getting heart disease.

God, this aging thing sucks great big donkey’s balls. But, we just keep  on keeping on.

New Book: Silver Linings on Dark Clouds


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Announcing my short biography of my life with Alport’s Syndrome, a genetic, degenerative kidney disease that causes kidney failure.  I document the ongoing fight and struggle, not only with this insidious disease, but also the healthcare and social services systems, while trying to survive.

A personal story of life with kidney failure, from diagnosis to dialysis and finally, transplant. Facing uncaring healthcare and social services systems while fighting against a genetic disease that causes kidney failure, extreme fatigue, hearing loss and eventually death unless treated.

Click the link above on this website for more information about Alport’s Syndrome.  Then head to the bottom of the page to find where you can purchase and download!

Healthy Thursday: Live Salt-Free!


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Salt has been used since early times as a preservative, flavoring as well as 13,998 uses. In time, Man developed heart disease and associated diseases from overuse of this wonderful flavoring. So health professionals have told Man and Woman to cut all sodium out of their diet, lest they have heart attacks, hardening of the arteries, clogged arteries, diabetes, renal/kidney failure and so forth. I was 19 when my Dr. informed me I needed to cut salt out of my diet or I would have a heart attack.

At first the ban almost crippled my meals and enjoyment of eating, but in the 25 years since, I haven’t missed a single crystal. That same Dr. told me that fresh fruits and vegetables have enough naturally occurring sodium to more than meet my daily nutritional requirements. She gave me a 40 mg limit of sodium per meal: let that sink in.  An average fast food meal has 1751 milligrams of sodium! I’m allowed 40 mg per meal.

So to avoid diabetes, heart disease, kidney failure, high blood pressure, I don’t cook with salt or have it on my table, as I describe in my cookbook, “Simple, Healthy, Fresh 1.0” Instead, I allow the natural taste of foods to shine through.  Salt hides flavor, texture and fools your taste buds.  In my cooking, I use a lot of herbs, spices and other natural flavorings. These, used properly, enhance the flavors of fresh fruits, vegetables, low-fat meats.

When your mouth craves salt, what it’s really craving is something bright and sharp. Instead of those ‘salt substitutes’ that are all over the market (and, in my humble opinion, do nothing to stave the craving for salt) use dried citrus zest. My favorites are dried lemon and orange peel. You can make your own dried citrus zest: try lime, grapefruit, etc.  A little goes a long way! When I would use salt in my teenage years, my food would look like snowy-salt mountains. How foolish I was!

Now I just sprinkle about 1/8th-1/4 tsp when cooking and at the table.  I’ve got a line of peppers (from Allspice Pepper to Rose Petal Pepper to Mustard Seed Pepper)that I use when cooking and for the table for flavoring instead of salt. My kidney transplant doesn’t miss the salt, neither does the diabetes and heart disease (caused by renal failure and high blood pressure). Your body will thank you!