Not a Happy Kidney Day

[Brightsky69]

I am trying to stay positive...I am trying to stay positive.   

I saw my doc today. It was the last step for me to take before getting on the transplant list. My creatinine is 3.8 but last time it was 2.9. I'll admit it does bounce around a little bit. My BUN is 40. I am trying to hang onto this transplant for as long as possible. If my creatinine gets much higher I'll have to go on dialysis. My doc advised me to (of course) cut back on protein and increase my lasix because with my puffy legs I probably have about 5 pounds of fluid on me. I have to up my myfortic to 8 pills a day. Each one is 180mg. With the Immunosuppressive drugs that I am on (according to the blood work) I have the immune system of a healthy normal adult. Hence we need to increase my meds.

Here are my current meds.

Myfortic  (8 a day)
Gengraf 100mg a day
Phoslo 667mg (6 a day)
Prednisone 5mg a day
Lasix
clonidine (for blood pressure)
Cartia (for blood pressure)
Plus stuff for acid reflux and a shot for anemia and pill to keep my iron level up


My doc was asking me about weather or not I have anyone in mind to be my donor. I have two brothers and a boyfriend (O+ like me). A couple of cousins that say they want to be tested. But no one is really taking it seriously. And it is getting serious. My guess is no one close to me "see's" me as a sick person. I feel ok, I get up and go to work each day. I don't complain. I guess because I am not confined to a bed in a hospital everyone thinks I am fine. Plus they think "Oh she can live on dialysis....no problem" As we all know dialysis is really no way to live. It's just a means to an end. They don't realize how hard dialysis can be on a person.
I just have to know in my heart and believe that a perfect match kidney will come my way before I have to go on dialysis. Or at least not long after I have to go on dialysis.
In the mean time I am gonna cut back on protein and up my lasix to get this fluid off. I hope that the extra myfortic supresses my immune system and gives me some more time with this transplant.

Best wishes to you all. We are all in this together!!   

[xtrememoosetrax]

BrightSky,
Sorry to hear your news.

My doc was asking me about weather or not I have anyone in mind to be my donor. I have two brothers and a boyfriend (O+ like me). A couple of cousins that say they want to be tested. But no one is really taking it seriously. And it is getting serious. My guess is no one close to me "see's" me as a sick person. I feel ok, I get up and go to work each day. I don't complain. I guess because I am not confined to a bed in a hospital everyone thinks I am fine. Plus they think "Oh she can live on dialysis....no problem" As we all know dialysis is really no way to live. It's just a means to an end. They don't realize how hard dialysis can be on a person.

Okay, speaking as someone who does NOT have ESRD, I just want to point out that many people who ARE renal patients talk about being in denial long after they "should" be, so, looking at it that way, it shouldn't be all that surprising that folks without ESRD have the same problem. 

Having said that, I don't really have any advice about how best to convey the gravity of the situation to those who don't "get it."  I mean, I knew it was bad, but I didn't really understand HOW bad it could be until I started hanging out on IHD, and I'm not sure that that would work for everyone. 

Probably the answer is, as others have pointed out elsewhere, to somehow get someone ELSE to advocate on your behalf.  Not a big sales pitch, of course -- just the facts about your current situation, what lies ahead, the time frame involved, who can be tested and how, etc.  Some recommend, and I tend to agree, doing it as "mass mailing" kind of thing -- either on paper or via email -- in order to avoid putting people on the spot; okarol has written about this. 

Again, sorry to hear about your numbers. Hang in there; I'll be thinking of you.

[donnia]

   So sorry you are having a bad day.  I know how you feel about people not taking it serious.  Nobody (except my husband) took mine seriously until I went on dialysis.   

Good luck with your numbers, I hope they steady out and hold on strong until you get your donor lined up``

[Sluff]

   hang in there Brightsky, somedays are diamonds and somedays are coal. Things will get better. 

[stauffenberg]

There has been considerable debate over the years about whether protein restriction diets really help delay the onset of dialysis for patients sliding into endstage renal failure.  Some nephrologists view protein restriction as more harmful than helpful, since they feel it simply debilitates the patient, making him less capable of enduring the stress of dialysis, without helping delay the onset of dialysis.

[monrein]

I'm so sorry to hear this news but I'm glad that you're trying to stay positive.  I was in exactly your situation just about three months ago and it is so painful and emotional to lose a kidney that has served us well.
As for the donor situation, I myself was unable to ask people but my husband was my advocate and told our family and friends about the spot I now find myself in.  I have been overwhelmed by the generosity and response from people, including some who I would never in a million years have thought would have offered.

I think extrememoosetrax is exactly right in her post and of course Okarol has so much experience as Jenna's amazing and persistent advocate.

I too was on the protein restriction thing but found that my appetite was so low that I worried about getting enough.  I found it difficult to eat anything at all.  My naturopath recommended a protein supplement that does not produce as much toxin as it is already highly broken down.  I never took it because my dietician had never heard about it although when she investigated it she thought it looked pretty good.  No idea about the cost etc but here is a link to their website so maybe you could ask about it.

http://www.sonformula.com/

Thinking of you a lot Brightsky and know that we are here for you.

[Brightsky69]

Thank you all for the support. Today is a better day. My ankles aren't all that puffy today. 
I haven't told my mom about yesterdays lab work yet. It's not hard to tell her because she is about the only one who actually "gets it." I just have to catch up with her on the phone. 

[flip]

I don't know who told you that dialysis is no way to live but they were wrong. It may not be the ideal situation but it's still not bad. I live every day to the fullest, even the ones when I have dialysis. It's gonna be whatever you choose to make it. Good luck in your quest for a transplant.

[petey]

As we all know dialysis is really no way to live. It's just a means to an end. They don't realize how hard dialysis can be on a person.

Marvin and I don't feel this way.  In fact, we see dialysis as A WAY to live -- not "no way to live."  We don't think it's just a "means to an end" -- we think it's a means to stay alive a little longer.

Flip's right...

I don't know who told you that dialysis is no way to live but they were wrong. It may not be the ideal situation but it's still not bad. I live every day to the fullest, even the ones when I have dialysis. It's gonna be whatever you choose to make it. Good luck in your quest for a transplant.

This is not the path we would have chosen for Marvin's life and Marvin's health, but it's a path we can travel, a path we can survive, and path we can deal with.  It's the alternative that scares the hell out of us (right now, for Marvin, no dialysis = no life).  It's not easy (and we know because Marvin's been on dialysis for over 13 years), but it is do-able.  Just today, someone asked Marvin, "You've been on dialysis for 13 years!!!  How much longer can you do that?" and Marvin's answer was, "As long as I have to."

"It's gonna be whatever you choose to make it," said Flip .   Amen, Flip, amen!

[Romona]

 

[Sunny]

Life is what you make it. What I have learned from this sight, is that being on dialysis is not the end of the world.
That said, I'd like to say that adjusting your diet and meds is well worth a try if it means longer life from the kidneys you have  now.
What have you got to lose? It's worth a chance to try protein restriction. It also might be a good idea to get a trusted loved one
to act as your advocate for a transplant so you don't have that added pressure right now. I hope things will turn around for the best soon.

[flip]

I think every day is a happy day for my kidneys. They sleep most of the time and don't do anything.

[devon]

Not meaning to stray from Brightsky's original posting but... I will try not to go too far....

I was struck  by the "means to an end" and "being on dialysis is not the end of the world".  Like Sunny, I have also learned much from this site.

When I was told I would have to begin dialysis, I considered it "the beginning of the end". My previous understanding was that dialysis was simply postponing the inevitable. It was like paddling to stay afloat in the ocean far from shore. It would gradually damage me as much as it kept me living until the benefits were overshadowed by that damage and I would die from something or other attibutable to the treatments. 

IHD brought me into contact with REAL people suffering from ESRD and proving that life goes well beyond our diagnoses, that life isn't just dialysis and surviving, it's living with ESRD and dealing with our medical issues.  It's inspirational and encouraging. It's sharing our experiences and giving others the benefit of what we've learned so the future generations will be better able to rise above ESRD and live their lives longer and fuller.

Yes, "life is what you make it" and it's also what you share with others.  There's a kind of love that exists here where we care about and support each other, where we celebrate our lives and those who've passed.

As the Beatles wrote, "♬and in the end the love you take is equal to the love you make ♬"  and we are LIVING proof that dialysis is not the end, not the beginning of the end.  It's just a diagnosis that we all deal with and help others deal with while we go about living our lives to the fullest extent possible.

Now back to the subject at hand...

-Devon

[Brightsky69]

Dialysis was a hard adjustment for me the first go around. Not that it’s not a hard for everyone else too.  And it’s not something I want to go back to. But I’ve got to do what I have to do to keep on keeping on.
I never knew how crappy I felt on dialysis until after I got my first transplant. After the transplant I felt like I could run a marathon….right out of the hospital. I felt like I was just getting by on dialysis. When I got the transplant I felt like I got my life back. Right now I feel like I am starting back at square one.
I try not to get down about it. But it’s a scary thing for me right now.

[Sunny]

I agree, it is a scary thing for you to start back on dialysis again. Very understandable!
Hopefully, things will work out for you and you'll get another transplant. People don't realize the extent of your problems because
you are still up and about doing the usual things like you've always done. Maybe your new tactics will help your kidneys and you'll
get more time with them. Just wait and see how it goes and try not to worry. Hope things work out well for you.