MyKidney.com

Questions from You (via Formspring)

Krissi — Sun, 06 Feb 2011 02:06:59 +0000

When Formspring launched I created an account and started answering random questions from both my virtual (and IRL) friends and anonymous strangers. After a little while I forgot about Formspring until recently when a new conversation sparked. Over the last few weeks I've received a few really good questions that resulted in blog-worthy answers. The following first of two posts sums up, in a nutshell, my general philosophy about life (and living!) with less-than-perfect kidneys.

BTW - Want to ask me something (anything!)? At the bottom of this post you'll find a form that allows you to submit a question to me as yourself or anonymously.

What's the best gift you've ever given? (I originally mis-read this question as "what's the best gift you've ever been GIVEN," thus, my answer...

A kidney.

You actually gave a healthy kidney to someone? Who did you give it to?

No, I was the recipient of a healthy kidney :) My brother donated one to me after I was on dialysis/kidney failure for almost 4 years. Cool, huh?

You have a nice smile Krissi, and an awsome brother. So, during that time of physical uncertainty, did you think about death and how little time we have?

I didn't often think of my own death (or the possibility of it) because for all humans death is a certainty. I accepted long ago that I'm mortal and I can never escape it, but being the optimistic realist that I am I hoped/hope to live for a very long time. This isn't to say that death didn't hurt me - it damaged me permanently emotionally, but not out of fear of my own life's end, but because I watched so many pass away that I couldn't help. Clinically I probably have "survivor's guilt" or something similar and depression and anxiety have been the end-result of years living on the edge of life and death while watching others succumb to the battle. The reality of kidney failure and dialysis was that I was always 5 days away from death, but I chose (and continue to choose) to think more about life and *living* instead of waste moments on the infinite "what if's". I'm a fighter...and thank you for the compliment :)

If you had the opportunity to live one year of your life over again, which year would you choose?

I wouldn't change a thing about my life, not even the difficult parts... to "re-live" a year would mean something would be different and I like who I am already.

http://www.formspring.me/iKrissi

My Kidney in 2010

Krissi — Thu, 05 Aug 2010 23:10:40 +0000

It continues to surprise and humble me that MyKidney.com has continued to do well long after my departure from the site and ~~sparse~~ non-existent presence for nearly two years. To this day, I regularly receive email from kidney patients and their friends and families asking for advice and, more often than not, also expressing their concern for me and inquiring about my well-being. Thank you so much for all of your emails, Tweets, and Facebook contacts - they have not gone unnoticed.

On that note...

My transplant was three years ago on June 11th and I've traveled many miles since (literally and figuratively) in my personal quest for understanding life. I've come to some pretty bold and bewildering realizations... most of these things I always knew and could openly express aloud to others, but could never truly accept within my own head. Emotions I didn't even know I had (anger) and thoughts I'd never think I'd think ("will I really choose dialysis the next time 'round or will I take the easy way out?") have come and gone, some lingering, but all relevant.

Here's what I've come to realize (and finally admit to myself): No matter how far away I run or how much time passes I will never outrun kidney disease, its side-effects, and pitfalls. No amount of "mental break" or "emotional withdrawal" from reality will make this one very simple truth less factual. And you know what? That really pisses me off. While anger is a very new emotion for me to feel (and I've only just begun understanding it) I don't feel differently about one thing - this reality is what it is and I am who I am and I still like me.

I'm not returning to my former web presence in the same way you once might've recognized, but I'm returning just the same (in some familiar ways, in new places, and in some shiny new ways, too).

I took a very long break from blogging (more than 18 months, if you count all of my different sites) because writing things down forced me to face myself and my reality until my reality became overwhelming and I shut down. But recently I've been feeling twinges of need to write again - with passion and purpose (which, admittedly may still sound the same when read aloud) so that I feel creative and alive.

Thank you for hanging in there with me and seeing me through. I'll be seeing more of you soon...

Thank you - It's Good to Have You as My Friend

Krissi — Wed, 05 Aug 2009 04:00:00 +0000

It means so much to me that all of you took the time to send me hugs and good wishes on Facebook, Twitter and Tokbox and in all the other ways we stay close as friends.

This is such a scary thing for me. It feels like I'm re-living the entire experience as a young teenager when I first found out I had a serious chronic illness... the only difference is that I now know EXACTLY what road lies ahead.

I'm so very hopeful that things will proceed smoothly and that if my life's destiny to somehow find health that it will happen quickly (please!!) If my destiny is to continue bearing this burden, then I wish for the wisdom, strength and courage I've witnessed from many of my peers: The ability to be chronically happy and chronically positive.

I will keep all of you updated as best I can. In the meantime, I'm spending the next 3 weeks in NJ / NYC / PA with very close friends... I'm not quite there (I'll arrive tomorrow!) but I already feel surrounded by all of you...

Thank you - I love you all.

A (very brief) Explanation of the Results of MyKidney Biopsy

Krissi — Tue, 04 Aug 2009 12:00:00 +0000

#MyKidney biopsy results = I've physically lost 25% of healthy kidney tissue in my transplanted graft due to scarring from an as yet still unidentified cause.

The only knowns are that 1) my original kidney disease (FSGS) does not appear to be re-occurring at this time; 2) there is no evidence of acute rejection, but 3) the damage could be the result of an on-going "chronic rejection".

Most likely the damage has been slowly occurring (beginning sometime after my previous biopsy 18 months ago) while there were no clinical (or physical) symptoms. In this regard, kidneys are very resilient and can compensate for quite awhile before damaged tissue takes over and the remaining function can no longer shoulder the extra load. This is why there is most often a delay (even in cases where patients are watched very closely, like me) in the onset of clinical evidence of a problem until a somewhat significant amount of damage or kidney function has been lost.

For reference: A transplanted kidney should be functioning around 60-80% of 'normal' (what someone with healthy kidneys would naturally have)

My transplant is now functioning at around 40-45%. That's scary.

Where I go from here: In three weeks, after returning from my #WTFamI2 roadtrip, my transplant team will transition me to another class of anti-rejection medication in addition to adding an ACE inhibitor to my med list. The mindset behind this is that one of the anti-rejection medications I currently take (Prograf) and have taken since the first day of my transplant can actually cause kidney damage in people who are sensitive to it. Therefore, the transplanted kidney can become "poisoned" by the very medication that keeps the immune system from the body rejecting it. It's a catch 22.

By using another medication in lieu if Prograf it will eliminate at least one possible cause of the scarring and damage. It may or may not make a difference. It's a "wait and see".

In the meantime, it's one big game of "hurry up and wait".... seems to be the story of m life.

What's up with #MyKidney... (my transplant, not this blog!)

Krissi — Tue, 28 Jul 2009 03:00:00 +0000

I'm 2 years post-renal transplant. I've had no kidney complications, but I get bloodwork and see my doctor routinely every 1-2 months to monitor my health.

Three weeks ago during routine bloodwork, my serum (blood) creatinine level (a measure of kidney function) went from a very stable 1.0 (normal for me) to 1.4-1.5 (abnormal for me) indicating a problem.

Since, I have had several tests to determine what is wrong, including a renal ultrasound (to check for blood flow/blockages) extensive bloodwork, and medication changes. Today (July 27) I had a renal needle biopsy performed using sedation (mild anesthesia) at Tampa General Hospital. The procedure went as expected, without complications and only very little residual pain.

If the problem is urgent, I will know tomorrow morning and will be re-hospitalized to receive IV medications. If the problem is chronic or only mildly acute, it will continued to be monitored on an out-patient basis (with bloodwork and doctors visits, etc.) over the next few weeks, months, and ultimately throughout my lifetime.

I know that I have a 25% chance that my transplanted kidney could eventually become diseased with the original chronic kidney ailment (FSGS) that lead to my native kidney failure/dialysis/need for transplantation. So far, however, no other signs of FSGS reoccurrence have been clinically present, so at this time the doctors feel it is most likely not this issue.

It is also quite possible there will be no explanation for the jump in creatinine (the loss of kidney function) as this does happen from time to time in transplantees. The most I can hope for is that any damage already done can be reversed, or if not reversible, will not continue.

Hope this explanation helped!

Thank you all for your thoughts and messages - they've all meant so much to me.

<3 K

Happy Kidney Day - My Two Year Kidneyversary!

Krissi — Thu, 11 Jun 2009 15:04:51 +0000

On June 11, 2007 around 10:30 am my brother and I were in adjacent operating rooms. He was giving me the gift of life: one of his kidneys.

Two years have certainly flown by quite quickly - many changes, yet life still remains as mysterious and confusing as ever. Having a functioning kidney has allowed me much more freedom to LIVE, but I'm still figuring out my place in the world... then again, aren't we all?

The post celebrating one year of kidney health success still remains on the front page of this blog, and I've obviously been a bit absent. I'd love to take the time to explain all the reasons why I've virtually stopped blogging (not only here, but on all my blogs and in all the forums I used to participate in) but the easiest explaination is simple: I've needed a vacation from all things "kidney-related'.

I appreciate your emails and will continue to offer thoughts and advice when asked. I hope to someday return to MyKidney.com and write more frequently...

...but for now, I want to enjoy today and be thankful for my brother, his kidney, my family and everyone who was with me (and still is) through my kidney journey.

You guys rock!

P.S. Find me on Twitter - I'm @iKrissi

'It' doesn't simply go away (but I wish it would)

Krissi — Fri, 17 Oct 2008 01:13:45 +0000

I hesitate often to speak/blog about how I'm doing, because it seems that just when I say all things are good, I take a little step backwards.

"It" comes back - "It" is the fact that I have a life-long chronic illness that manifests itself in different ways, depending on how "It" feels. No, "It" doesn't simply go away, no matter how much I wish it would.

I'm still dealing with ongoing chronic pain/fatigue - and "It" is something no one can figure out.

All I (and my doctors) know is that I've tried just about every prescription and non-prescription sleep drug/therapy/aromatherapy/knock-my-self-unconscious method and the bottom line is still the bottom line:

no sleep (or poor sleep) equals pain,
equals less sleep,
equals a total body meltdown
equals "It" consuming more of my life than I'd like it to.

This week has been particularly bad - I've had a pain/fatigue 'flare' since last Friday. All week I've just kept wishing "It" would go away... well, "It" doesn't.

I'm seeing a new Rheumatologist. She's all about the "let's-test-you-for-everything-we-can-think-of" and less about "let's-throw-more-drugs-in-your-general-direction-hoping-'It'-will-go-away". I'm starting to run out of options (and tests to have administered) other than to simply just treat the side effects of pain, pain and more pain.

BTW I still want to refuse the continued suggested diagnosis of Fibromyalgia. Why? Because I don't want to be labeled with a "last resort" diagnosis... even if the label really does apply to me. If "It" turns out to be Fibro, then fine. But in the meantime...

Wouldn't it be easier if all this stuff was an exact science?

Wouldn't it be easier if "It" could all go away? I'll take one order of 'live my life like a normal person', please.

I think my life is 'normal': 15 months post-transplant

Krissi — Sun, 28 Sep 2008 12:01:28 +0000

I can hardly believe it's been 15 months since my kidney transplant. Wow, has time flown!

Have you been wondering about me and about the health of my transplanted kidney? Wondering what I've been up to and what I'm planning for my 'normal' future? Read on...

My kidney is doing really good, so good, in fact, that my doctor seems to want to see me less and less (something that is taking me awhile to get used to!)

I'm also having blood drawn only about once every 6 weeks - can you imagine a life without needles? I almost can!! My creatinine is holding steady between .8 - 1.0 and my transplant medications are at the lowest doses imaginable. I take 2mg of Prograf in the morning and 1.5 in the evening, in addition to 360mg of Myfortic twice a day. That's it! No steroids or other transplant-related medications.

In the rest of my 'normal' life, I'm busy planning my wedding, being a mom to an eight-year-old boy (with boundless amounts of energy) and hoping to go back to work soon or re-enroll in college to finish my degree.

The most recent (and exciting!) news to report is that our family is about to take a huge step... in a west-bound direction. Sometime after the first of the year we will be moving out of the state of Florida. We're not 100% certain exactly where we'll be in the state of California, but we hope to live somewhere in-between the San Diego and South Orange County area. Additionally, there is a small chance that we may move to Colorado, instead.

Life is moving me forward... literally!

A note about MyKidney.com and my obvious frequent absence:

The more time passes, and the further away I get from chronic kidney disease/dialysis/transplantation, the less I feel like blogging about kidney topics. No, I'm not in denial that kidney disease will forever be part of my life, I'm just not needing to put it first in my life on a constant basis.

I can actually say to myself "I will probably be alive tomorrow," instead of "I might be alive tomorrow," - there's a big difference between the two.

On that note -

While I know this website has been (and hopefully continues to be) a resource for so many other kidney patients, I won't be (personally) blogging as much - but never fear, the site and blog are staying put... I could never take it offline. This site, and I (and the other bloggers) will be here to help, listen, offer advice and share our on-going experiences with you.

Please keep in mind that I'm always on the lookout for some serious bloggers who'd like to contribute to this site, so please remind me (again!) if you're interested in becoming a MyKidney.com blogger.

Also, feel free to email me to stay in touch. Stay close and be happy!

Babies adopted from China may need kidney testing

Krissi — Thu, 25 Sep 2008 04:07:07 +0000

Not often do two major parts of my life (international adoption and kidney disease) cross paths, but this news article out of Canada speaks to my heart (and kidney) in more than one way.

----------

Babies adopted from China may need kidney testing, agency warns
CBCNews.ca | Wednesday, September 24, 2008 | 7:12 PM ET

Parents who have recently adopted a child from China may want to have them tested for kidney damage, according to an Ottawa-based adoption agency.

The Children's Bridge is sending warning letters to adoptive parents following a tainted baby-formula scandal in China that has left four babies dead and more than 50,000 ill.

Although none of the recalled products are believed to have been used by the Children's Bridge agency in China, executive director Sandra Forbes said the organization is warning parents as a precaution.

"We have contacted our on-the-ground people directly in China, and the products used by the child welfare institutes are not on the list," said Forbes, whose organization is the largest international adoption agency in Canada.

None of the adopted children have shown any symptoms of melamine poisoning, Forbes said.

She recommended, however, that adopted Chinese children who may have consumed dairy products in China between December 2007 and August 2008 be tested for kidney damage caused by melamine, a toxic chemical that was added to milk to help boost the appearance of protein.

"Those folks may decide to have their children examined by a pediatrician or tested, given that they really wouldn't know whether their children would have been exposed or not."

Melamine is used in plastics, fertilizers and flame retardants. It has no nutritional value but is high in nitrogen, which makes the products appear to have higher protein content than they actually do. Suppliers to the dairy companies that produced the tainted baby formula have been accused of adding the chemical to watered-down milk.

For families still in the midst of the adoption process, the scandal has been particularly disconcerting.

A Halifax man who is waiting to collect his adoptive eight-month-old daughter, Catherine, has learned her orphanage in China used some of the products suspected of contamination.

"I've heard it can cause kidney stones," said Craig Fraser.

"OK, well what does that mean for a child? Obviously it [can] cause death, so that's the worst case. What if it doesn't cause kidney stones, are there any other impacts? So it's unnerving. We're in kind of a wait-and-see game right now."

Fraser said the orphanage in China has already run some tests that indicate Catherine's health is fine. However, he is still waiting for a second set of test results.

"She's not showing signs, or obvious signs, that she's been harmed by it. That being said, you still want to know for sure."

Fraser said he knows many people who have adopted babies from China, and the concern is growing as the scope of the tainted-milk scandal spreads.

Canadian public health officials said they have yet to find evidence that children living here have been sickened by the contaminated products. Doctors' offices and adoption agencies across the country, however, are reporting a surge in calls from concerned parents.

Canadian adoptions from China peaked in 2005, with about 1,000 babies coming into the country. This year, about 400 babies are expected to arrive.

My Kidney Blog Maintenance

admin — Sat, 16 Aug 2008 23:44:27 +0000

The My Kidney Blog site has been updated -

~ Upgraded to Drupal 6.4.

~ Installed the new releases of the Comment Notify, Comment Closer and Akismet modules.

Note to fellow MyKidney Bloggers: You will now start receiving emails whenever someone leaves comments on your posts!
Note to Everyone: The Comment Closer module will auto-close commenting on posts older than one month. If you read an archived post and have something to say, the My Kidney Bloggers would love to receive a contact email.
Note to Spammers: Akismet will eat you.

~ My Kidney Blog has been added to AllTop.com under the Health category. When you've got a moment, take a peek at AllTop's site and check out the new sidebar button. Good job, everyone!

Enjoy the updates to My Kidney Blog and we'll be seeing you here again, soon!

Krissi