Howdy folks

[ccates]

Hello to everyone and I hope this finds you well.

My name is Craig and I am an instructor at a local community college teaching computer technologies,security and networking.
I have taught for 29 years.

I was diagnosed with kidney disease fall 2016. At that time my eGFR was 27. The previous November I have test results that
 show my eGFR was >60. I am a diabetic which we had problems controlling and slight high blood pressure that was easly
controlled. I really felt fine.I was referred to a nephologist who's first question was "What have you been doing?"
I was taken aback. My blood pressure was by that point very high so he put me on Hydraulizine, Cardizem and another one I can't remember.
They made me feel tired and weak all the time. I would wake up and barely function till noon. Fortunately I was not teaching
and just working on a grant so I was not on a schedule. When school started I was able to arrange my schedule to have only
late morning and aftenoon classed and so was able to continue to work. By December my eGFR was 24 and I was sent to have a fistula
put in. At this time I was transferred to a new Nephrologist associated with my local center. The start of the next semester
I still felt fine so I continued to teach my classes. After a couple of months I was relieved of my grant duties but still was able
to teach my classes. I felt ok but started being more tired. The Nephrologist said I could start dialysis any time but I wanted to
 finish the semester so my students education wouldn't be interrupted. The last week of school I started having severe diarrhea.
It could have been a bug or it could have been a result of my disease. I got very dehydrated and couldn't eat. I finished my classes
and attended graduation. I was very weak at this point. The next day my wife got me in the emergency room. I was severely dehydrated
 and was transferred to a bigger hospital with a dialysis unit. My creatinine was 7.6. After 3 days I was re-hydrated to the point I could
undergo dialysis. The first nurse knew what he was doing and I had no problems. The next day a different person infiltrated me and
I had to stop treatment. When I got out of the hospital I started the next Saturday at the local dialysis clinic. That was two weeks ago.

Since then I have been just dealing with the routine. They infiltrated me again but not as bad. It's not bad but boring and I have been having problems with postural hypotension. I believe they do not have my dry weight figured right. My first weigh in was after not eating for over a week and believe I have gained back
real weight since then. The wipeout is awful and I have been having to use a cane in case I get dizzy.

I am applying for a transplant and going through several test they have setup. Stress test, Echo-cardiogram, CT, Colonoscopy, Teeth checkup,
Bladder scope and enough blood drawn I'm lucky I could stand afterward. 15 vials.

I plan to start training for home dialysis as soon as possible but we have to toughen up my fistula and get to bigger needles.
Plus I have to setup a room I can keep the cats and dogs out of. I hope to get started before school starts in August.
 
It's nice to meet everyone here and I'm sure the site will be very helpful.

Thanks,

Ccates

[Blake nighsonger]

 



 

[kickingandscreaming]

Hello and welcome.  Has anyone suggested doing PD (peritoneal dialysy)?  No needles, no pain, few to no food and fluid restrictions.  I've been doing PD for over 2 years and my dog has been a part of it.  She is not blocked from my room.  It's not too late to check it out as another option.

[LorinnPKD]

Welcome!

I started on hemo with a new (nine week old!) fistula and infiltrations were unfortunately common until the access built up a little more.  But after that, thinks have gone pretty smoothly.

And I think it might take some time to figure out your dry weight.  I think I gained ten pounds or so my first six months after feeling awful and having no appetite for so long before starting treatment.  My weight fluctuates all the time (and always has my whole life!) and with new medications etc causing weight changes, getting my very good neph to modify my dry weight accordingly has been a challenge.  But we're working it out.  As you know, BP is a helpful indicator that you've pulled off enough.  One technique is to use a profile for ultrafiltration, which allows them to pull more off in the beginning so I don't feel so woozy at the end.

Remember that you are your own best advocate.  It's OK to ask your medical staff questions about your concerns and use your resources.  If you are infiltrated, you have a right to stop treatment and work out a plan for your next treatment.

K&S is 100% right that you may want to look into peritoneal if that's an option for you, as it seems to more gentle and lets you bounce back a little easier than hemo.  I'm not able to use that modality due to my condition (and I love to swim!) but it's definitely worth exploring.

[Michael Murphy]

Welcome to the site,  and the answer to the unasked question is yes it gets easier, as your fistula matures you will be infiltrated less and less, dry weight is not a science as much as it is a art.  Do not take off too much fluid it makes Dialysys much worse if you have to remove 4 or 5 kilos.  Drink less, eat protein (Dialysys removes protein from the body) and keep fighting for the kind of life you want to live.

[cassandra]

Welcome to the site Craig


   




Take care, Cas

[ccates]

Thanks for the replies. I'm reluctant to do pd because I too love to swim and the thought of a permanent hole in my body is not a happy one. I'm afraid that my lifestyle (gardening, working on cars, not avoiding dirt etc) would lead to an infection quickly.

[kickingandscreaming]

I'm reluctant  ito do pd because I too love to swim and the thought of a permanent hole in my body is not a happy one. I'm afraid that my lifestyle (gardening, working on cars, not avoiding dirt etc) would lead to an infection quickly.

It wouldn't be a problem as long as you keep your hands clean when you do your connections.  I am definitely NOT a clean freak and I manage to do PD.  The "hole" in your  body is something you get used to.  I assume that's also true of a fistula (which to me looks like there's an Alien in there that will pop out shortly).  No matter what form of dialysis you choose, your body will be deformed in some way.

[Cupcake]

I know it's risky but I swim. Chlorinated salt water, at a gym that is pretty low bather load. I avoid the "therapy" pool that is small and tons of senior citizens bobbing around. I wind up the PD catheter under a 6 X 8 inch tegaderm sheet and most of the time it's completely dry underneath. I change it immediately after showering at the gym. So far so good! I also use the tegaderm before kayaking, as once I flipped it and went for a little swim.

[Simon Dog]

I did home hemo for 5 years, have to go back in center due to family circumstances.  Even so, doing my own canulation with buttonhole is far better than having someone else do it.  Even if you do not go to home hemo soon, you might want to get trained in self canulation.

[Charlie B53]

Welcome to our IHD 'Family' of the afflicted.  We also have a lot of Caregivers here so we are a pretty large 'Family' constantly growing.

Dry Weight is difficult to nail down.  Mostly trial and error for the first couple of months.  It's difficult, and the side effects of getting too dry too fast are terrible.

My Fresenius clinic has a neat new toy added to the machine that looks at the blood, measuring opacity I figure.  I asked, yes, it is measuring how well light passes thru the blood, using that as a measure of the water content.  For many people this may work better and hopefully not pull out too much fluid causing cramps and the extreme exhaustion that comes with many treatments.

[LoneHighway]

It’s called a Crit-Line and it is to monitor fluid status during dialysis. You probably will have to ask for it although as a new patient they should have been using it already.

I’m sorry to hear how difficult it’s been for you but things will get better and we’re here for you.

[Paul]

 

Hello Craig, welcome to the site.

[ccates]

Just an update

They did a crit line Thursday and ran a different profile on the machine Saturday. It worked better and I was able to walk out out of the center and drive home as opposed to having to be wheeled out in a wheelchair. And for the first time in a long time I was able to get some stuff done around the house today. So maybe things are getting figured out but I'm still having bad postual Hypotension. Just now sitting bp is 166/89, standing is 116/73. That's better than 137/80 Sitting, 80/57 standing(barely).  So i seem to have a choice, have good blood pressure sitting down and not be able to stand or have high blood pressure sitting and be able to get around and do stuff.

Craig