my...introductory? i suppose

[hoganwolf]

Hi, I suppose half my life can be summed up as such. In 2010, I found out I had nephronopthisis at 14 after hundreds of trips to the doctor because I generally wasn't feeling well. It took 5 months from when I found out to when I got a kidney. 6 years and multiple bouts of rejection later and the transplant kind of gave up. So I got a central line in and started dialysis. Then I got a fistula and have been using that at the center I go to. I don't know much about dialysis really, I just know that I get stabbed and sit for 4 hours every Monday, Wednesday and Friday while my blood leaves my body so I can live. I stumbled upon this site by accident and as soon as I read the name, I knew I wanted to be part of this.

[Simon Dog]

Learn all you can about dialysis.   Ask for a referral to someone who runs a home program so you can at least have the process described in full.   Keep up with the journal articles so you can ask your MD intelligent questions.    Read the repair manual for the dialysis machine while you are being treated.

Ok, maybe some of that is extreme, but you would be doing yourself a service to learn as much as you can about the various options including home hemo and PD.   Don't just sit back and let someone else make the important decisions for you.

[iolaire]

Welcome to the group.

[Charlie B53]

Welcome to our IHD 'Family'.

Take charge of your own life.  Study 'Renal Diet' and learn how food and drink affect your treatments and labs. Reducing the potassium and phosphorus intake along with very strict control of all fluids reduces the amounts the machine has to take out of you.  Keeping those 'take-offs' within a smaller size reduces the shock to your body during every treatment.  Large take offs can be the primary cause of ill feeling during and after treatments.

If I understand correctly, you are yet so young.  There are many that have also started much younger than I and have been doing this for a great number of years already.  It simply becomes part of our routine.  Keeping control can allow us to have our treatment and continue on with our day.  An inconvenience for sure, but one that we have control of.

Those that do their own treatments at home can tell you the advantages of daily treatment is much more freedom with fluid intake as well as an added measure of dietary freedom.  As needle-phobic as I am I don't think that is an option for me as yet.  Maybe someday, just not today.

I am looking forward to hearing more from you.  There are lots of areas within our forums, lots to read.

Take Care,

Charlie B53

[hoganwolf]

 Thank you all for the warm welcome. I am young but I will be trying to learn as much as I can from all of you and my own research as well.

[iolaire]

Thank you all for the warm welcome. I am young but I will be trying to learn as much as I can from all of you and my own research as well.

Its very good (for your life) that you are looking into learning about your chronic condition.  Various members of this site have been on dialysis for 20+ years and from that you can see that dialysis is a long term treatment option. If you can stay health and respond well to dialysis you should be able to live a great life around the dialysis time commitment. 

One word of warning is that if you are US based (and able) please look to getting an education and looking forward to employment that will work around dialysis.  I fear for young people who might make the choice for long term Social Security Disability benefits as that likely will lock them into a frugal lifestyle for the rest of their lives.  That's not to say you should not take advantage of all the available befits to get through your schooling.

[cassandra]

Welcome to the site hoganwolf


   


Take care, Cas

[hoganwolf]

As far as getting a job that works around dialysis, I'm lucky enough to have gotten a state job that does work around dialysis so that I have my dialysis days off and work all the other days. Thanks for good advice though

[Jean]

Oh boy are you lucky to have a job that you have such good manners in. You have already gotten a ton of good advice and if you continue to join us you will get lots more, plus opinions. I personally dont have any opinions, because I am not yet on dialysis. But, at any rate     to IHD.