Make A Difference.

I just found this video. It's what I do every day.
Home Dialysis | NBC Connecticut

I hope you know I am praying for you Kim.

Thank you Patrician.
I've actually been contacted this past week telling me I will go back on the transplant list soon,and sure enough I've received scheduling for 3 tests already.

The videos were sent to me on Facebook and I just thought I'd share them.

Kimw,

I doubt ANYONE could consider this political or religious. I hope you get a nice healthy kidney that you tolerate well, etc... I also hope it is fully covered, etc...

And THANKS for the song! This might be the rendition I like BEST of all! I think I first heard it on "50 first dates". Cute movie, by the way!

Steve

Steve,

I think you know more of whats in store for me if I ever do actually get a kidney.
Thanks for the well wishes.

Yeah kimw, Maybe. I complain about having to take warfarin, etc... I complain about little pains, etc... I can only imagine what rejection pains feel like. I imagine it would be like my new abdominal hernia at the worst, and maybe being kicked you know where REALLY hard. You WILL have to take antirejection drugs which would hopefully prevent that. But it would still be better and cheaper than dialysis. OH, and for costs, I heard recently that a live transplant could cost over $200,000. Since I can't imagine it is that much harder than a regular transplant, I imagine a regular one may cost about the same. You save on the surgery costs, but have to pay for the kidney. BTW that is about what my open heart surgery cost.

AND, you will probably only get ONE kidney, so you would have to be that much more careful. AND, I have NO idea how long it may take to find a kidney that matches well enough. Being high on the list only means that you are more likely to get the next one that matches. People lower on the list might actually get a kidney first.

As I said though, I really hope all goes well for you. It would be nice just waking up and realizing that you may NEVER have to deal with dialysis again! 8-)

Steve

Ah, one of my biggest fears is that for antirejection drugs they give you certain steroids, which,the only time before that I have had them cause me to have what they called acute steroidal psychosis,which in my case means I lost my mind for 3 days. Of course,I think I have mentioned this before, but that was also how and when they diagnosed me with kidney failure. Some have even suggested in the past that its possible the stearoids are what cause my kidney failure. I don't know and even if so I couldn't prove it.
But the bottom line is you are right, it would/will be a blessing to wake up and know I don't have to do dialysis.
But, strange as this sounds, one thing I often tell my wife I miss is just being able to gulp down a big glass of ice water.
It is true at times that its the little things you miss.

Kim,
best of luck and if there's anything we can do to help out - you know we're there for you. Its what family is for.
--Jack

Thank you Jack. Got to say the laugh you gave me in another thread today was probably the highlight of my day today!

You're welcomed Kim - everyone - except Jim (my old boss) - usually enjoys that story.
--Jack

Kimw,

Steroids come in all types. HECK, steroid basically means sterol like. And sterols are more important than you might think. Heck, look at what wikipedia says about one that has a BAD reputation:

So don't think that all steroids will affect you so bad. HECK, you need them to even live.

And yeah, I know what you mean about water.

Steve

In retrospect it looks like I made this thread for myself. but honestly, I was just trying to spread the word about the National Kidney Foundation , and I got links to the video and the song almost at the same time, so I thought to myself..Kismet!
In reality, both the National Kidney foundation and The American Kidney Fund have helped me beyong words over the past few years. If it wasn't for The American Kidney Fund I would not have health insurance. When my wife got laid off I had to get my insurance COBRAed in,and The American Kidney Fund pays the insurance premium for me. I probably owe them my life. I hope I get a transplant before it runs out because I won't be able to afford it otherwise!
All I can say is forgive me if I get overzealous in spreading the word at times,because I am grateful to these organizations,and to everyone that helps support them.
To everyone that has wished me well over the years, I can never say thank you enough.

Kim - you've been a friend to each of us, too, at one time or another - take your thread and fly with it. You deserve it. I so hope that kidney comes through for you soon. I'd like to see you walk out of your house for a week vacation and not have to worry about going anywhere and getting hooked up. It's a freedom that we all take so very much for granted and I hope it's yours too again real soon. I might not be one to pray, but I sure know how to pitch some good energy at someone when they need it. So if you feel something hit you, it won't be a rock. Um....not from here anyhow.

Kimw,

I think we ALL realized it was general. But, outside of a general donation of money, or risking our OWN health to be a live donor, or being a regular donor after we die, there isn't much we can do. So we can realize there is a need, agree, and wish YOU the best in YOUR case.

Steve

Another recent story.

http://www.nytimes.com/2010/08/17/he...brod.html?_r=2

Yeah, I didn't even bother to answer that. Often one with an illness may become a bit of an expert in it. So it is reasonable and almost expected that kimw really knows about kidney function, dialysis, and insurance problems.

But HEY, calling it to another's attention certainly isn't out of line. Overzealous? NOPE! It isn't like you are harping on it, etc...

Steve

The second video kinda makes me sad, but love it. And the first video kinda shows how many people suffer but are not really recognized due to the lack of concern for this illness.

The REALLY sad part is that kidneys are so important. And they are more important than people think!!!!! And that is saying a lot! And YET, they are one of the easiest to destroy. A LOT of new drugs are being blamed for damaging the kidneys.

Steve

Steve -- advil is the number one cause of kidney failure in the US, along with other fake asprin drugs. You think that might be reason for the FDA to pull them off the shelves? Guess again. Instead they are spending money hiding little facts like the one above from you.

Well, I may have said this before, but NO headache medicine EVER worked for me! A doctor prescribed one to me, and I told him FORGET IT! IT WON'T WORK!

He said I was "taking it wrong". My problem? I FOLLOWED DIRECTIONS! OH SURE, BOTH had the SAME directions, whether OTC or prescription, take TWO tablets! But the prescription had tablets TWICE the size.

I have suffered through headaches since, even though IT WORKED! WHY? It can cause liver and kidney damage!

Steve

Ah what the heck, here is a link to the other great organization I am thankful for.

Kidney Disease, Kidney Stones, Kidney Failure - American Kidney Fund (AKF)

Who Knew? - 5 Things You Should Know (and Share) about Kidney Disease

Thanks waterotter,good to see I got a reader! lol.
On the personal front, I was just declared 20 months cancer free on Monday,which means in 4 months I can go back on the active transplant list.
I don't have the article handy, but I did post one in the past about how drinking soda on a regular basis can contribute to developing kidney damage, and if I remember correctly, it especially applied to women. You might want to google that for some reading when you find yourself bored.

Nice. Thanks for sharing.

Best of luck Kim, I wouldn't worry that much about the operation if I were you. Kidney transplants are so routine now that it is regarded as a relatively minor operation compared to other transplants such as heart, lung, liver and bone marrow.

The risk of Post-op infections and graft rejection are much better lower now and long term graft survival is now the norm. Just make sure that you keep yourself as physically and mentally fit as possible.

Derek

Thanks Derek.
Other than the normal fear of any operation, my biggest fear is having an adverse reaction to the anti rejection drugs. One of the main ones they give you is the very same medication that caused me to have phychosis.

Steven,
Thanks for your thoughts.
The past few years has actually made me very thankful for a lot of things in my life that I took for granted before.
I guess one of the effects of it though has been that I have become a cheerleader for getting knowledge of kidney failure out to others.
And I am sure at times others here get tired of me talking about it,lol.
But for me, to go from being a healthy individual (for the most part) to someone that has a machine keeing them alive every day in a matter of a few years was quite a journey, both physically and mentally.
The things I have shared with you here (all my WF friends) have been only the tip of the iceberg.If I told you everything, you would think I was making it up! BUt it is the little things that keep me going.
And of course, all my WF friends add to my day,those I already know and those I'm yet to make.
PS: Hey Steven, you do know this is Wednesaday and not Monday, right?

Wow steven,

If you ever want to PM with with details, I'd be curious. You NEVER know! I had a SIMILAR thing happen. when you have a REAL bad back, some might think bad ****BACK**** and never consider the symptoms. I had a REAL bad back which meant that my back might hurt, certainly, but it also sent pain down my legs, practically paralyzed me, sent pain through my arms, wrists, and even gave me headaches. LUCKILY, a physical therapist knew what he was doing, and relieved MOST of the symptoms to some degree. Every few years I had to FIGHT to get that relief back. I have been pain free, at least from the back related problems, for YEARS!

BTW my bad back first presented as something like CTS, but it was on the OTHER side of my wrist!

But yeah, all sorts of things happen and sometimes the simplest little thing can be a BIG problem. Like the guy on house that was paralyzed, wanted to die, etc... and house found it was a little growth into his spine that couldn't even be seen with the MRI! Or the girl that seemed to be a dwarf and have TONS of problems, and it was a growth into the pituitary. It would have been obvious if her mother hadn't been a dwarf.

Steve

Well steven....

If I were you I would check EVERYTHING I did.

It is possible that you took that long to detox, etc... OR it could be a change of cleaners or soap, or the fact that you are older or got used to whatever, OR, someone could have changed something in what you are taking. WHO KNOWS! HECK, I used to know ALL ABOUT the various vitamins. NOW, they have a couple more, cofactors, etc... Earlier, those were likely NOT in vitamin tablets. NOW, some ARE! Of course, I don't think the average tablet changed THAT much in the past few years, though some MAY have.

And HERBS? Sometimes those DO change a LOT! Some herbs, for example, are used because they work, but NOT reliably! THEN, they find active ingredients and refine them, and may add those ingredients, or replace the whole product. Sometimes a supplier won't supply a given ingredient, so they go elsewhere and get a SIMILAR one. SOMETIMES the law forces a change!

ALL of this, using just the herb, then adding concentrates, then replacing, getting a similar product, and the LAW forcing a change, happened with ephedra, for example!

And what of diet drinks? They USED to have like saccarine, then they had other sweetners. NOW, WHO KNOWS!? SOME have 3 or 4 DIFFERENT ones, in the SAME BOTTLE!

So try reading the labels closer, because you might have improved because they changed something, and they might change back.

USUALLY the type of change you are talking about would happen in like a month or less, so you ARE likely missing something.

Steve

Hey Kim, just posting to wish you all the best

I don't post much in the forum, but I sure read a lot and you seem like a really nice guy.

I'm sending you my good vibes buddy. Hope you get better