Dialysis...What's the real story.

Welcome back, Sturgis. (I was wondering where you were.)

I can help with questions you may have.

just take my screen name and add at yahoo to it and you have my email address.

Sturgis... I'm sorry to hear you have not been feeling well. I hope that you will feel better soon. I am glad to see you back and hope you will keep us posted on how you are doing. Take care.

sorry to hear you're unwell, sturgis.

my sister in law carries a dialysis class at the college. if she can hook me up with any info from the teacher, i'll send you a pm.

don't let it get ya down.

We never asked, is this a potentially temporary condition?

Appreciate the information and links as well as good wishs.

So what happened? My own inept clumsy stupidity (I was not watching where I was going) caused me to take a header (a fall) which was complicated by location. Then it was off to the hospital, my head had taken a hard hit and there was a slight gash on the back of it, but no fractures. Living alone (and with a decent insurance coverage) I was held overnight, the following afternoon I was still slightly out of it and the headache was killing me. More x-rays, and some other testing. My blood pressure was also rather high (I've had the high b.p. for a while -but not to these numbers...so they figured to hold me a little longer. I figured it was worth it and then the problems began and by the time they were ready to discharge me on day 3; I was running a fever and the rest is history (mercifully I am not).

Where it began...A few years ago my doctor had noticed the protein levels in my urine were running higher than the accepted normal levels and that is where my journey technically begins. I went through various tests and was hooked up with a nephrologist (kidney doc). It was determined that there were some minor tears in the overall working mechanics of my kidneys which was causing protein to leak. It has been monitored since then (although it never occurred to me to discuss it here or anywhere). The numbers have remained steady fluctuating from a low of 530 to a high of 640 and back and back again. It had not gotten worse, however the doctor feels that they (the kidneys and the entire renal duct system) had been somewhat compromised over time and so the infection was able to move in and cause fairly severe damage. His opinion is that the dialysis will be long term and even advised me to take these next few weeks/months/years...the time frame is variable for all...to discuss this with any family members who might be suitable as donors (now you see why I drifted towards terror). As for whether it will be permanent, I want to go with the wise words of Guy Clark from The South Coast of Texas, "ah but nothing is forever say the old men in the shipyards turning trees into shrimp boats, hell I guess they oughta know" in other words time will tell. The diagnosis is l.t. but I'm a Virgo so I have special powers and may be able to get away from those pesky machines.

I suppose one of the things that this situation has shown me is that I should have taken the initial kidney matters more seriously and started out on my research journey then. The oddest part was my journey began at the same time that my late brother-in-laws journey ended. He died within the week of my 'protein leakage' diagnosis. Clearly that kept me from discussing this with family or anyone else. Well, it's clear to me that it made perfect sense (looking back I am now cursing the years I wasted).

Main thing is that I am having everything tended to and am expected to survive.


With regards to the idea of peritoneal...YIPES! I have known about it, but figured a while back that the hemodialysis was the way I would want to go. A simple incision into the wrist as opposed to the tube into the stomach...seemed like a no-brainer to me. The doctor agreed...remind me to thank him.


Other positives from all of this are that I managed to shed 20 pounds (okay it was only 19) of weight. The medical community is happy that I finally lost some of my excess poundage although the method was a little apart from the usual methods.

Again, my thanks for the concerns and I will do my best to keep people informed as things progress.

Sturgis--

I made some phone calls and confirmed a bit of half-heard wisdom from a few years ago.

Two individual dialysis nurses, one in Florida and the other in Ohio have told members of my extended family that the people who manage to thrive on dialysis are people with inner resources. The patients who flop down whining and bemoaning their fates tend to be shorter lived than those people who come in with a paperback and a positive attitude.

Positive thinking works.

Hold your dominion.

earlier, you were in denial, which is what most people would have done, and now you're second-guessing yourself, which is also quite common. for better or worse, it's time to move on & look to the future. i also second noddy's excellent advice about maintaining a positive outlook. good luck; i hope things work out.

Sturgis

I work for the dialysis company Phoenix mentions in her post.

You would be fortunate if you are dialyzing at one of these clinics. Our centers have the best clinical outcomes in the entire United States.

Indeed, check out that website, there is much that can be learned from it.

The hardest thing a dialysis patient struggles with on a day to day basis is their diet, and limiting fluid intake.

Your quality of day to day living will be strongly enhanced by adhering to the proper dialysis diet.

Whatever you do Sturgis.....DO NOT MISS ANY OF YOUR DIALYSIS TREATMENTS!!!!!

I Repeat....DO NOT MISS ANY OF YOUR DIALYSIS TREATMENTS.

You are probably set up for 3 times a week, with a treatment lasting 3 to 4 hours.

The dialysis machine, in that 9 to 12 hour period, is trying to do the job that your kidneys perform 24 hours a day, 7 days a week.

People who do not go to their treatments, or cut them short are STUPID, STUPID STUPID!

Any damage done to your kidneys by not being dialyzed CAN NOT be reversed. By staying on top of it the maximum amounts of waste products will be removed from your blood stream.

Yes, it is very scary. However, for your life you must make sure you receive your dialysis.

Oh, in case I haven't mentioned this....DO NOT MISS ANY OF YOUR DIALYSIS TREATMENTS!!!!!

Seriously, check out the website Phoenix gave you.

Well, I'm very sorry you have to deal with this at all, Sturgis, and I can't really add much to the helpful info being posted, other than to echo what Farmerman said about knowing you will be able to deal with this hurdle in your life. Keep a positive outlook and follow Chai Tea's obviously good advice, which in a nutshell appears to be, "DO NOT MISS ANY OF YOUR DIALYSIS TREATMENTS!!!!!"

Look at it this way ... these treatments will be a good chance to catch up on any reading you've not been able to get to lately. :wink:

Wow! Good resources there, much obliged.

Again (in case I forgot) my thanks to all.

As for attitude, most times I am fairly positive about things, I guess the years of denial of what was always lurking followed by the sledgehammer hit of reality is just leaving me somewhat shaky but I figure the fact that there is a way to continue living is something I ought to embrace and run with. (hey I'm new at this lifestyle change). I've also looked with gratitude at the fact that I retired from teaching last year. With the time available I won't have the concern of being tired or having to squeeze the dialysis into a work-week schedule..grabbing all the positives I can here.

Not to worry Chai Tea, there is no way I intend on missing any of these treatments. It has occurred to me that after a few months this will be come rather routine and just be a part of my life the same as brushing my teeth. On liquid intake I may be in luck since I am not a big beverage consumer as it is, however I am trying to get the entire dietary thing figured out, and may find I am drinking more fluids than I'm aware of. I contacted my sister today since I know she went through this with my brother-in-law when he was told of his kidney ailments and is the one person I know of who has a full listing of the yes and no items for eating. When my blood pressure went wild a few years ago I began making changes and shortly thereafter I was first told my kidneys were leaking and made a few more adjustments and that may have helped and will hopefully make things easier now since there are less things to alter in the food column.



More later.

I'm no help regarding dialysis. Just wanted to send my good wishes Sturgis. It's good to see you back here, and good to hear you are holding up.

I'm really glad to hear that Sturgis....The Dietitian at your clinic wil be able to provide you with information re your diet, planning for special occassions, and will be working with you closely with your labs, which will be done on a regular basis.

I'm not just blowing smoke here, but the Nurses, Dietitians, Social Workers and Techs that I know are without exception very passionate about their work. There may be times you become frustrated, or even ticked off, but rest assured, they really do care about your well being.

I have witnessed the head banging of clinical staff against the wall during patient care meetings over patients who aren't compliant. I've also seen the jubilation when a patient is doing well.

<catching up>

Sturgis, your positive outlook cheers me!

Back again, Sturgis, to add my support & encouragement to the that of the others. Not that it sounds like you need it! You sound very positive, organized & determined. A question: can a person use a computer while on dialysis? (Sorry, don't know much about this.) If so, a bit of A2King may help you pass the time! And would be terrific for all of us, too!

I was wondering the same thing. Seeing we're all over the place, I don't think there would ever be a time of the day when there is a shortage of company!

I like Noddy's take 'Show up with a paperback and some resolve"
Thats pretty much it. The inconvenience can be time in which you can accomplish other things . They didnt have laptops when I was doing dialysis , but had it been today, Id search out those clinics with WIFi or otherwise do some writing.
Chai, I couldnt believe that people would miss their dialyses appointments .

Farmerman--

Remember one of the complications of Katrina was that people evacuated to unfamiliar cities had no notion of how to arrange dialysis sessions?

Also people who regard dialysis as medical invasion rather than a mechanical extension of their own body are apt to play games with appointment scheduling.

Many clinics under construction will automatically put in internet access for patients. It's just cheaper to do it that way right from the start.

Existing clinics generally don't.

One of your arms does have a needle in it of course for the duration of the tx, so I don't know how comfortable a lot of typing would be, but surfing and reading shouldn't be a problem.

Most people read, watch TV, or sleep.

Noddy, respectfully, that is balderdash the people being evacuated had no notion of how to arange for dialysis.

Social Workers were able to at the very start arrange for tx's (tx = treatment) at different locations for some patients....then, as you can imagine, it quickly became out of control and overwhelming. At that time SW's gave every single patient and/or family lists of clinics, phone #'s, etc.
At the same time, patients were given by medical staff instructions for special diets that would help see them through in the event they had to miss a tx or 2.

I was the point person for 5 clinics in the Austin area, and received literally hundreds of phone calls from people over a 2 or 3 day period.
What my company decided to do was keep the clinics open 7 days a week, added more shifts (some clinics only ran 2 shifts a day, some clinics were only open 3 days a week...the norm for a big clinic is 6 days open, 3 shifts). We ran FOUR shifts, every chair filled, every day over that weekend. The dedication of the team was absolutely amazing.

Anyway, here is how it went with people calling in....we had determined, let's say, we had 200 chairs available.....The first people calling in that Thursday were, desparate, afraid sometimes we would not treat them as they ususally dialyzed at another company. We didn't care about that....it was first come first serve...I'd say 95% of them were just grateful to get a chair anywhere, even if it meant being one day late for a treatment. The other 5% weren't happy, but ususally had a valid reason.

Chairs filled up quickly, and by late Friday evening the people calling in were, I'd say 75% upset when I would tell them....show up at xyz on Sunday for the 2nd shift.....Noooo....they'd say, I want SATURDAY FIRST SHIFT. At that point, it was easy to remind them there was an evacuation in progress.
That were also by that time getting cell phone calls from people half way here, amazed that they were having difficulty finding a shift.

Finally, it came down to this....on Friday night, Saturday & Sunday, I would tell pts to just show up at one of the clinics, in the hope that someone would no show.

I'll give you one guess who most of the no shows were....yes, you win....the people who hadn't planned ahead, and who we went out of our way to accomodate.

I'm not saying this to be bitter at all, it's just that many people like to make it sound like no one is trying to help them, when indeed they have been provided with all the help possible.

OK - rant over.

Farmerman, we track the percentages of no shows, and it's very predictable what will happen...let's say in one month there's an unususally high # of people not showing up for their tx.....The next month, that rate goes down....BUT, the number of tx's missed due to Hospitalizations skyrockets.

connect the dots.