I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Joe on September 08, 2011, 08:16:08 AM
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Greetings all! As you can see, my name is Joe and I'm a new home PD practitioner. My diagnosis is IGA nephropathy which has left me about 10% functional. This has come on quite suddenly and caught everyone from my nephrologist to me by complete surprise. I was feeling just fine and doing routine labs to keep an eye on things, the next thing I know I'm in the hospital with some really scary numbers. I get released a week later the proud owner of a PD cath. I started doing CAPD training the end of August and am waiting to cycle to CCPD the next 3 weeks or so. My PET test and initial evaluation are scheduled for the 19th of this month and we move on from there.
I've been reading a number of the posts in the various forums and have learned a lot. Thanks to all who share their experiences here. I will attempt to do the same. It's great to find a place with so many kindred souls. Look forward to learning more and sharing as I progress down this new path in life.
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Welcome Joe! So glad you have found us. Yes, there are alot of peopleon here with a wealth of knowledge and some really good people! PD is a great modality choice. Just take care of your cath. and you will do fine. Follow the instructions of your trainer about the being extra sanitary.
I hope PD lasts you a long time. My husband did PD for 5 years, which is not bad, I guess! At least you will be home and in control of your health. Do you have anyone for a "back-up" in case you need them?
So sorry things went South on you, but you will get good advise and info here.
Again Welcome and ask any question you like,
lmunchkin
:kickstart;
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Hi Joe,
As a 3-year veteran on PD, I can tell you that if you are disciplined and pay attention to detail, you will find that PD is a much more independent way to go. By no means do I want to say that it is a piece of cake, but it helps when you have some control over your dialysis daily.Best of luck!
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Welcome to the site :welcomesign;
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:welcomesign;
Glad you found us!
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:welcomesign;
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I also have IgaN and had been diagnosed for almost six years when my system went from quite stable to the point of death in about 3 months this past spring (2011). No one knows why that happens. Some people with IgaN can go to ESRD in just a few years. You don't say how old you are but this disease seems to be something we are born with and first symptoms usually appear in late teens or early 20s and sometimes progresses to ESRD very quickly.
I'm certain I had symptoms in my 20s (I'm 58 now) but no doctor was able to find anything wrong and I was (mis)treated for all kinds of other things. So in my case I went 30+ years before my kidneys failed so I consider myself lucky. I'm now on CCPD and though I have my ups and downs, at least I'm alive and feeling well enough most days to exercise and be active and continue to work full time.
I hate dialysis but it beats the alternative. :beer1;
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My husband 30, also has IgA.. He found out when his gfr was 25. And two years of being relatively stable, hes down to 12 now and trying to schedule surgery for his PD cath. I know everyone is different, but how long before they let you take over treatments at home? and were you able to keep working during the few week of starting dialysis?
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My husband 30, also has IgA.. He found out when his gfr was 25. And two years of being relatively stable, hes down to 12 now and trying to schedule surgery for his PD cath. I know everyone is different, but how long before they let you take over treatments at home? and were you able to keep working during the few week of starting dialysis?
I had my cath surgery on 10 May 2011 and started PD training on 23 May 2011. The training was 2 weeks (which was actual D but at a limited level) and then I started CCPD at home. I was off work for about 3 days after the cath surgery, but then worked about 3/4ths time until I started doing CCPD at home. I've been working full-time most days since, though I have to work in doctor visits, etc. Fortunately, I work for a small family-owned business that has very flexible hours.
I have to admit though that some mornings it's hard to get my motor started. :P
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Thanks for the quick response. It's a relief to hear you were able to work most of the time/get started at home fairly quickly. I was reading through some other threads where people were still on hemo for months even after having the PD tube put in... And it seemed like many of the people had to take those months off of work to recoup.
The doctor just won't give us any kind of time lines on anything, much less any guesses on how much work my husband will miss. He has a desk job and his boss seems open to letting him telecommute, so I'm keeping my fingers crossed he can get through the appointments and training as quickly as you did. ;)
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:welcomesign; Joe!
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Willis, my story is just about a mirror of yours. I was diagnosed about 26 years ago, but no one thought it would be a problem. My creatinine moved around a bit from time to time, but nothing that really worried anyone much. Then all of a sudden all my labs went to heck in a handbasket and I wound up in the hospital. I'm doing CAPD now with the move to CCPD in the next few weeks. And, BTW, I'm 58 also; maybe it just our age :rofl;
Semanticsinahat, I have been at work all the time with the exception of the time I spent in the hospital. I am doing 4 a day exchanges now, which is pretty straight forward for the morning, afternoon and bedtime ones. I do my mid day exchange at work and just lock the door to my office and proceed. So far, it has worked out well for me.
HTH
Joe
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I do my mid day exchange at work and just lock the door to my office and proceed. So far, it has worked out well for me.
Except for that time you forgot to close the transfer set before disconnecting and peed on the carpet...come on, admit it! You've done that at least once! :rofl;
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That happened during training - lesson learned!
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One time is all it takes to learn that lesson.