I Hate the Idea of Dialysis

[Simon Dog]

Removal of the cath is a fairly painless procedure, though it does in involve a bit of tugging while the MD gets it loose from where it has become attached to the exit site.

I showered with my cath and kept it dry - www.korshield.com

[Xplantdad]

My Daughter has had her CVC in for almost 2 years with no infection ever. We use the same stuff as SimonDog!

[Jean]

 Just randomly looking at posts that have grown since last time I posted. I noticed you live in So. Cal. So do I. I am in Riverside and would love to get a little group going. Are you close to me? Riverside is about 60 miles from LA. Let me know.   

[kristina]

Hello Kathy,
I can understand your frustration about the change in transplant waiting-lists, because I have heard similar "put-downs" about my own transplant-waiting-list situation
and I do hope that both our "put-down" predictions are to be proved wrong and we are hopefully lucky and won't have to wait overly too long for our transplant!
I send you my best wishes from Kristina.

[jmintuck]

I am keeping eyes out on artificial wearable kidney, as well as implantable kidney, also those that are grown from your own DNA, or flesh, to put "back" into ones' self.  I am wanting, if possible, to hold out for a few years, if the doc thinks it is OK to

wait a few years, then fall onto the transplant list after, if there exists no further choice leeway anymore. I am just generally staying aware of these renal developments, go get a CD-

RW of some papers on this and notes when I find anything that is PARTICULARLY significant and needs urgent notice to the doctor.

I can't believe to get a kidney disorder in THIS day and age where there ARE developments and much more hope, than way back in the 1930's and 1940's. Back then, you were generally pooched if anything generally happened to your kidneys.

Likely in Great Grandaddy's age, when HE was back in HIS childhood, everything would have just packed it in when I got sick. That's it, Folks.






sp mod Cas

[Kathymac2]

Hi Jean - I'm in the San Fernando Valley - not too close to Riverside.  Nice to meet you (almost) neighbor.

Hi Kristina - I'm with you. I hope both of us will be lucky and be offered a transplant soon. To me it seems the current waitlist system is broken. The longer we are on the waitlist the more health problems develop.  From what I've read on these boards sometimes people become so ill after long-term dialysis that they can no longer qualify for a transplant.  It's heartbreaking.

Hi jmintuck - I'm not holding my breath for an artificial kidney.  I remember the first mechanical heart. You might want to consider applying for the transplant list now since you will probably have some years to wait once you get on the list before you are offered a kidney.

[jmintuck]

I thought a few times before about a transplant. I am tempted to start asking about it soon.

[Simon Dog]

Hi Kristina - I'm with you. I hope both of us will be lucky and be offered a transplant soon. To me it seems the current waitlist system is broken. The longer we are on the waitlist the more health problems develop.  From what I've read on these boards sometimes people become so ill after long-term dialysis that they can no longer qualify for a transplant.  It's heartbreaking.

Hi jmintuck - I'm not holding my breath for an artificial kidney.  I remember the first mechanical heart. You might want to consider applying for the transplant list now since you will probably have some years to wait once you get on the list before you are offered a kidney.

Another problem is that as you spend time on the waitlist, your EPTS score goes up (from age, years on dialysis, and possibly medical problems), so if you ae below 20 now, you may "age out" of the <=20 range and lose your ability to qualify for a KDPI <= 20 organ.

As go "will be some years, get one now" - the first few years are likely to be a waste.  If you sign up a few yeas down the road, your waitlist time will be backlisted to when you started dialysis.

[Charlie B53]

..................... If you sign up a few yeas down the road, your waitlist time will be backlisted to when you started dialysis.

That is still a big 'IF'.    There are yet many medical conditions that can prevent listing.

Fortunately PD is working very well.  They tell me I should have a great many years yet.  NOT to worry.


Don't you just hate it when anyone tells you not to worry?    You can't help but wonder what they are NOT telling you.

[Simon Dog]

That is still a big 'IF'.    There are yet many medical conditions that can prevent listing.

True, but you won't "lock in" your listing by doing so early .... they can still boot you off if you become unqualified.

Fortunately PD is working very well.  They tell me I should have a great many years yet.  NOT to worry.

That's what they told me.   6 months later I was having a cath installed since a fistulata takes time and I needed hemo immediately.

Don't you just hate it when anyone tells you not to worry?    You can't help but wonder what they are NOT telling you.

Yeah, regular Alfred E. Neumans.

[Charlie B53]

LOL   It's been a long time since I read that name.  I used to read Mad long long ago.



I figure I am already living on borrowed time for years already.

When it becomes my 'time' there ain't much any one on this planet can do about it.  So I may as well enjoy what I can while I can.   So to leave decent memories with those I love around me.


Hopefully I will still have time to make many many more memories.