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[Blake nighsonger]

Hey anyone starting to itch in hands back head ears neck then it stops. GFR is 15 creative 4.2 still working( on river boat I'm a capt. Starting to get nausea a bit . Bun is 70 had 5 inon infusions in last 3 months feeling pretty goog as hb was 10.5 last labs. Don't have a rule of thumb on how to go bye on how I feel if that makes sence .... It like do I have a leg to stand on if I want to whin just a little on how crapy I feel say like when I wake up at times or how lazy I can be .... Searching for a answer to questions I don't know how to ask.
      Thanks for listening ---- blake





EDITED: Topic split,renamed and moved- kitkatz, Admin

[kristina]

Hello Blake,
I remember bouts of itching whilst I was pre-dialysis and the best answer for you would be
to see your nephrologist as soon as is possible and discuss these issues ...
... I was told that my own itching originated from my kidneys not being able to "flush out"
what should have been flushed out and because of this, my body used my skin as an outlet ...
How are your blood-test-results? Do they show what could be the cause of your itching?
What does your nephrologist say?
I send you my best wishes and good luck from Kristina  .

[Michael Murphy]

 I refused to start dialysis till I got a sign from God it was time,  this sign is called a symptom.  One day I began to get nauseous in work, and after lunch I toss my cookies.  I took this as the sign called my nephroligist and started dialysis the next week.  This occurred after two years of being told it was time to start.  What I did during those two years was change my diet to not processed foods and avoided foods containing  potassium and phosphorous.  In those two years I lost 35 pounds and was in better shape when I began dialysis.  In  the two years since I lost another 35 pounds and while dialysis is no walk in the park I must admit I feel better than I have in years.  Good luck I hope it works out for you.

[Blake nighsonger]

Thanks Michael, had to read it twice before it registered ,
I'm going to do what you did , wait for a sign from God , cause anything else doesn't come through as you explained simply.
That's exciting about getting in shape and feeling better tthen you had in years.
Lord willing I'll get that same effect. As we know something always take the joy out of living!
I'm joking ,.....anyway thanks again you know how to communicate this experience to others I'm sure as well as you have to me.

[Vt Big Rig]

Blake,

It was my pre dialysis experience that my itching was caused by too much phosphorus.

My neph allowed my to start taking binders and that helped a lot. You might discuss that with him.

Like Micheal I pushed off D as long as I could. I was not quite as smart as he, as I was getting sick a couple of times a week and at the end could hardly walk across the living room without resting.

However, also like Micheal alluded to, once I started I asked myself why I waited so long since I felt so much better.

You did not mention it but I would highly suggest if you have not done so already to get a fistula installed. Work at getting it mature and ready.

Good Luck.

[iolaire]

Welcome, well you wait for a sign from god please don't let your body get too run down.  I believe that the dialysis transition will go easier if you have less active health problems when you start. 

Have you had your fistula installed? If not please do, that will allow you to start dialysis with surgery for a catheter and since the fistula takes some time to develop its best to do it early.

Have you investigated how you will do dialysis?  And are you on the river for days or weeks?  If so you might want try to phase on to dialysis when its convenient to you (rather than waiting for medevac and weeks in the hospital).  Also consider looking into the NxStage system which is portable and might be something you could do on the boat.

[Michael Murphy]

the advise from iolaire is great,  don't wait to be hospitalized its better to start when the symptoms become obvious, when you reach the point of swollen ankles, shortness of breath, and the constant horrible taste in your mouth you have waited too long,  those are major symptoms.  The other arise from iolaire is to have a fistula installed,  as soon as possible. I did. Best and only smart thing I did that year.  About 2 years prior to starting I had my fistula created.  That gave it time to mature and when I started Dialysis it was much easier.  If you don't have the fistula installed, the way you start Dialysis is with a Chest Catheter.  With a Cath you can say goodbye to showers and swimming,.  So the fistula advise is golden.

[Blake nighsonger]

Yes sir i'v had my fistula first in lower left arm .it didn't take so I got one in upper arm that's good and deep neph said. anyway.....

[Michael Murphy]

If you tried pd could you continue to work by using a cycles or manual during your 6 hour off.  I know you had to work awful hard to do what you do.  The other thing is to use binders and really watch your diet you may be able to put off dialysis. Plus see if you can get on transplant list asap.  I hope you can find a way to keep your job, it's sounds like a great way to make a living. 

[Simon Dog]

Nausea was my symptom when PD stopped giving me enough clearance.   I would pull up to a stop light, open the door, do my business out the door, and be done before it turned green.   As a boat captain you can always go over the side.  But, seriously, time to talk to your MD and see if it's time to join the dialysis club.  At minimum, you may want a fistula and/or PD cath installed.

[Blake nighsonger]

thanks! over the side works if the wind is blowing leeward of the launch. Got upper arm fistula 180 days ago. anyway..... talk yo you later










[ 7 months}awhile back. 

[Blake nighsonger]

Thanks it's a great living most the time and others its like being in jai and getting paid for it. ha huh..... anyway got fistula a while back ,its a given I have to stop my present work if I start dialysis due to regulations ect... on commercial vessels due to safety issues( could get a waver perhaps unlikely though)don't have bad tast yet have swollen ankles shortness of breath cant tell if that's from overwiegth or lung lobe out upper left side or as on list but inactive due to 30 ibs. to heavy. my legs always are sore prtien is in 2000's last lab anyway haven't got sick puking ... as long as I'm workink I felt doable get home laying around resting from trip feel like crap . anyway.... took labs tody , the whole smear ones iron urine ,

cbc,pth







eaver 9wperhaps