Newbie from the Philippines

[X3nt]

Thanks everyone! I love this forum! There is a sense of "Community" here.

I already have a fistula on my right arm. I got it last September. My eGFR then was 15. 

Hello fellow PKDer! Any plans of getting a transplant? They said we are good candidates... Less complications my neph said...

[LorinnPKD]

Hello PKD'er!

Yeah, my transplant assessment went really well and the transplant people said I'm fortunately otherwise healthy and potentially a very good candidate for transplant.  Although my kidneys are enormous (both are football sized and I'm 5'5") and if I did find a match, they'd either have to remove them or take a chunk of one off (ouch!) so they could wedge the new one in there somewhere.

Not everyone gets huge PKD kidneys, though.  I'll take them both out eventually, perhaps in the next year or so because they're causing some considerable back pain and I'm pretty uncomfortable. But right now they're still working partially and I am grateful for the remaining degree of normalcy they still provide.  I still have some fluid function and lots of potassium function, so that means fewer dietary restrictions for now. That seems to be the silver lining of PKD -- even though you have to have dialysis, function seems to fail in phases so you can settle into the whole ESRD thing a little more gradually.

PKD is so weird!

[X3nt]

Hello,

I wanted to give everyone an update on my status

1.) I am still not undergoing dialysis. I can still take it. I still pee. Not bloated. I am Itchy but manageable. I am taking Renvella 3x a day. That helps a lot
2.) Tramadol seem to ease my RLS. I also bought an electric massager. it eases the pain a bit
3.) My Pruritus seem worsening. It's on my scalp and face now.
4.) I developed a fear of holes. I am EXTREMELY Trypophobic now. I used to watch pimple popping videos on YT. But now, everytime I see a hole/group of holes, I feel itchy. Your shoes have holes for ventilation ie (airmax 270) I automatically scratch my back or arm. Anyone else have this?
5.) I am surprised at how many people are willing to sell their kidneys here in Manila
6.) I have a potential donor. My cousin. She's type O as well. It gives me hope.


Have a great day everyone!

[LorinnPKD]

Hi Vincent, so glad to see an update from you!

So this is important: With PKD, the ability to pee has very little to do with your remaining function.  Seriously -- I was down to 6% GFR and my neph was threatening to strap me down on a hospital gurney and dialyze me right then and there and I was like, Relax! I'm still peeing!  I feel fine!  I'm perfectly fine!  (I was not perfectly fine!)

But PKD makes the kidneys fail in stages.  You may be peeing lots of fluid, but your kidneys aren't getting rid of the toxic stuff properly.  (My first renal dietitian called it "discount pee" because it looked the same and was the same volume but it was poor quality pee.)  I've been on dialysis two years now and I'm still peeing, though now a little less than before.

So Stage 5 looks a little different for us.  Here's how I felt when it was time to start dialysis:

- I was sleeping all the time
- I was barfing all the time - brushing my teeth made me gag
- I could barely eat
- I was getting pretty weak
- Climbing a flight of stairs took some real preparation and determination
- I was having trouble concentrating and remembering things
- I had restless legs, like they had minds of their own and wanted to party all night
- But I was still peeing like a champ!

What's your GFR these days?  It's somewhat subjective but PKD is so deceptive because our ESRD symptoms are different from many other patients.

(And congrats on the potential donor!)

[X3nt]

- I was sleeping all the time ( My sleep pattern depends on how tired I am)
- I was barfing all the time - brushing my teeth made me gag ( Nope, I don't have this)
- I could barely eat (I am eating OK, so no)
- I was getting pretty weak (Occasionally but not all the time)
- Climbing a flight of stairs took some real preparation and determination (So far so good for me)
- I was having trouble concentrating and remembering things (I still work my IT job so I guess no)
- I had restless legs, like they had minds of their own and wanted to party all night (Now this I have)
- But I was still peeing like a champ! (Me too!  )

[Charlie B53]

I've been on Dialysis 5 years already.

Still tired all the time.
Won't go downstairs to the basement as stairs are a whipping.
I don't get sick. Fortunately.
But I'm rarely hungry enough to cook a whole meal.  I will toss a pot pie into the microwave.
Sleep way too much.  Regular naps two, sometimes three a day.
Don't think I have RLS, I am easily able to fall asleep. I use a CPAP.

I hope your Tx comes soon and all goes well for you both.

[X3nt]

Thank you!

Well... Last Sunday, I woke up and felt like I was dying. I can't feel both my legs and I was having difficulty breathing.

I was rushed to the hospital and lab results showed my Crea was through the roof. The others were normal like Sodium, Phosphorus etc.

I started dialysis last Monday. The first session was 2 hours. Then Wednesday, it was 3 hours. It was OK. I was bored and my legs were RLS'ing but over all it was ok

My next dialysis would be this Saturday then Wednesday. 2x a week.

During my 2nd session. The tube clotted, is that normal? It was the tube the brings the blood back.

Also, I am bruising. the part where the fistula is, it's all bruised! Is that ok?

[iolaire]

I hope the transition to dialysis continues to go well for you.   I hope the RLS will also decrease as your blood gets cleaner.

The tubes do clot a times, they might use heparin to help thin your blood a bit so that doesn't happen. 

I don't know for sure about the bruising but I would think it could be normal as either blood is spilled from the vein when the vein is punctured as the person doing the needles miss the vein, or just the pressure on the vein from returned blood is causing some leakage from the vein.  Whenever I've gone for angioplasty where they use a balloon to open the vein where its thinning I get a huge amount of bruising that last for about two weeks.  Also that bruising can move under the skin, so it starts by the vein but by the end its no where near the vein.

[LorinnPKD]

Hey there -- and wow!  That happened so quickly.  I'm so glad you're OK!

I had some pretty dramatic clotting.  The tube got all clumpy and looked like something out of a monster movie.  My neph ordered heparin and it's been smooth sailing since.

And I had some pretty dramatic bruising as well as my fistula was developing, and a few infiltrations!  It was pretty colorful for the first two months or so and occasionally for the first six months.  I'd go home and ice it down.  For really bad infiltrations we'd have to skip a day.  It all improved with time. 

My clinic has internet so I bring a tablet (I strap it to the TV stand!) and watch movies.  I get so bored watching the clinic TV so having my own setup is a lot nicer.

[X3nt]

Today was my 4th Dialysis and I experienced my first cramps and boy was it NASTY!

Aside from cramps, I also felt lightheaded at the same time. Nothing a salty treat won't fix though

I am still bruising... My veins are still small so the nurses are still having a hard time locating it...

[iolaire]

I am still bruising... My veins are still small so the nurses are still having a hard time locating it...

Have you considered learning how to self cannulate - i.e. stick yourself? Some people swear but it and it gives them a lot of control.  Usually people who self cannulate use button hole's so that means you build a good access site that you use again and again, so you are not trying to find the vein each time.

I'd think that it would be easiest to learn before you slip into the routine of letting the nurses do it.  At my clinic they didn't really teach it but some tech's would help patents learn if they wanted to.  A lot of times when I traveled the nurses at the destination would tell me that I should learn to do it to help protect my fistula.

Figure out your dry weight, if you are cramping they might be taking off too much liquid.

[LorinnPKD]

Yeah, if you're still peeing, your dry weight may be a moving target.

For me, we didn't take any fluid off for the first 17 months I was on hemo.  And then we started taking a little, and six months later the rest of my kidney function is going pfffft in slow motion so we take off about a kilo plus each time lately.  There's really only been once or twice in two years that I came off lightheaded.

If you're peeing still, this is definitely worth a discussion with your neph.  You shouldn't be lightheaded when you come off.  How is your blood pressure during treatment?  Are you reclined during treatment?  (I ask this because I sat up straight with my legs down to be more comfortable one time and very nearly fainted.)