I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: gorwell1984 on February 24, 2008, 02:20:44 PM
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Hi,
My name is Rick and have been a member for about a month. I am getting ready to go on dialysis within the next 30-90 days~. I would like to list a number of things that I would like to be able to continue doing and if I could get some feedback on what type of dialysis experienced members think may be best for me.
1. feel the best/ most energy.
2. my wife goes out of town 5 weeks in March, 2 weeks in July, 5 days in October and 2 weeks in first part of December every year. So I would not have or at least it would be hard to find a "partner" during that period of time for at home. Although at home sounds good to me (from what little i've learned about it, maybe NxStage? but am about indigent, or will be when that time comes). I have a good paying job now with good insurance but even with a GFR at 33 and Creatinine at 2.09 I feel very weak. My hematocrit is at 32.5-33 and I get a procrit shot every 4 weeks of 400,000 units? something like that.
3. It would be wonderful if I could continue working.
4. How hard of a time will I have getting SSD disability? and if I'm making $45k a year now and have been working since 1968, approx how much disability would I get? When shoud I start looking into disability? Will I need to attain an atty to get disability (or at least more $ disability). I've been at the same job for 11 1/2 years.
If I can think of anythiing else I'll edit this thread or continue it with a reply.
Thanks in advance,
Rick
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Hi Rick,
Between reading IHD and working with your Neph & dialysis unit, you should be able to make the best decisions for your situation. You may not have to stop working. I didn't. Of course my employer is very flexible. You can use sick days and or short term disability - either way, you have a disability, and your employer is federally mandated to make accommodations for you. Social Security should be sending you a yearly statement which should have your average disability payout on it. Your social worker should be able to help you with SSDI/Medicare.
As far as dialysis modalities are concerned, I was in center for 10 months and then switched to NxStage. I love frequent home hemo (5x a week), and it has made a huge difference in my energy levels. (I also do it without a partner 100% of the time) But everyone is different, and you may respond well to PD or in-center.
Have you had a fistula placed?
This is a tough time, you are feeling crappy and the future seems dark and oppressive, but there are thousands of us out there who are here for you. Settle in, make a list of questions and educate yourself. (you may be educating the staff people taking care of you as well with what you are learning. I know that my Neph is reading IHD and so is my dialysis nurse)
I think that a lot of the dialysis veterans out there will have some good advice.
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Its difficult to help people choose, some love hemo, because you are looked after in a clinic and just have to turn up. Some like PD because you dont have to go to hospital ! With hemo you get time off with pd you dont I can only tell you about PD because thats what i do and love it! You need someone on hemo to tell you the good and bad of that With pd you will need about 5 days training to learn what to do, you can be on your own at home to do it , you dont need any help.You have to get used to the fluid in your stomach and the bloated feeling.Restrictions are fewer and i think it keeps you on a more even keel regrding how you feel in general. There are so many things i could go into , but if you have any particular questions , post on here and we will try and answer them for you :2thumbsup;
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I been on hemo for almost 2 years now, most days after my treatments are spent taking a nap. Now, even though I get epo, and my blood count is within target (13-13.5), I still feel washed out on dialysis days. I am trying to switch to PD for several reasons, first and foremost because of a recent change in staff in center, which is a nightmare in itself. Secondly, I keep reading how much better PD patients feel, my conclusion is because of doing more dialysis. Another strike against in center hemo is patients coming and going. You cant help but to make friends, after all, you will see them 3 days a week and up to 4 hours at a time. Seeing them pass on, at least for me, is a hard thing to swallow. I could go on and on, so in short, try to get on anything but in center dialysis. PD people ,correct me if I am wrong, but with PD, its something you can do without a partner if need be. I hope this helps you make a decision, thanks for reading.
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I am predialysis...so I cannot offer you advice from my own experiences but I can tell you that Epoman was in center for almost 12 years and learned Nxstage and regretted not doing that earlier, he said he felt free. See his story and his experience with Nxstage here:
www.ilovenxstage.com
Goofynina did PD and she loved that because her eating habits were not as restrictive because she did daily exchanges.
I don't know if I helped you or made it harder to decide but this is two good perspectives and mirrors the same advice as the above posts.
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Hi Rick, great way to start off with a list of questions. I don't have much to add, Meinuk said most of what I would. I was in center for over two years, because originally I thought it would be easier. Now I do home with Nxstage, and I too do it myself without a partner. It's not hard. I too work, but part time. I have three kdis, that's full time! I hope the social worker will help you with the rest. Best of luck, you have to go with what's right for you. No one is really better - alothough doing it more frequent does give you better clearance, and I do feel better doing it 5 days a week at home vs. in center. Best of luckl.
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I started out on PD and am now temporarily doing HEMO for 6 weeks in a clinic - (developed a leak in my peritoneal lining-waiting for that to heal before I can go back to PD >:(). To me, going to a clinic is very depressing. I can tell you that PD is the way to go for me, but everyone is different. I felt so much better on PD and I too worked full time until I started HEMO and then I took Short Term Disability till I'm done with that. If I was to take a permanent disability, I believe I would get 66% of my pay. I have LTD and STD thru my work.
There is no way I could work and do HEMO. I have just found that out - I get sick sometimes after the treatments and just feels like I have no energy & tired most of the time, let alone go to work and try to think all day long.
PD is easy to learn and you feel so much better than on HEMO. Your workplace should work with you on providing a place to do an exchange - it should be an office or somewhere clean where no other people are in the room for the time you need to do the exchange. (I would not recommend a bathroom either). I am fortunate that I have an office and I can shut the door and put paper over the window when time comes for my PD exchange-takes me about 1/2 start to finish. I am also thinking about going on the cycler - (you do the exchanges at night - every night) in the future, but right now just need to get through the HEMO. Only 2 more weeks of it hopefully............ Yoooo hooooo, then back to PD or maybe even a transplant soon. I'm in the process of getting on the list right now.
You do know you can sign up for transplant without being on dialysis don't you? There are some criteria involved and I would ask your Neph about it.
Good luck to you which ever direction you choose to take. I know sometimes the medical professionals have a tendancy to sugar coat things - but just ask IHD and you will get the answer you are looking for the way it really is.
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I'm on PD, am on the cycler, and work 40 hours a week. That said, I could NOT do it while on hemo. I have had to be on it twice now,
temporarily, and just did not function well with it.
I LOVE PD. I love the freedom it gives me, in scheduling, and in my diet. That said, we are all different, and have different needs.
You can certainly switch to one from another, as long as there are no medical restrictions to using one form over the other.
You DO need to have fistula put in well before it is needed, if you plan to do hemo. If you plan to do PD, the catheter needs a few weeks
to heal, so you need some time for that as well. If you do PD, ask for the cycler, it's a lifesaver!!!
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Statistics show that the health quality achieved with hemodialysis for four hours a session, three times a week, is the same as that achieved with peritoneal dialysis, so the choice is a matter of preferred lifestyle, unless there are special medical reasons why the patient has to have one type of dialysis or another.
Home hemodialysis performed overnight for six nights a week, with the seventh day devoted to cleaning the machine, gives the highest quality of health, the most energy, and the longest life expectancy. Having a partner is an important help, but it can be performed alone if necessary, especially if your dialysis access is a permanent catheter rather than a fistula.
Only 30% of patients of working age who are on dialysis are able to work, but your best chances for that are with home hemodialysis.
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I'm on NxStage home hemo. Most centers will require you to train with a partner, although it is possible to arrange things so you can do it by yourself. It's also possible to train with more than one partner. If you can stick your own needles, then you really only need someone who understands the basics about what to do if your blood pressure crashes while you are hooked up, and can simply be there as an extra set of hands. I trained with one partner, but have several others who can act as "back-ups" if needed - there's not much to helping when I stick my own needles.
If you want to keep working - some form of home dialysis, either PD or hemo, is going to be a big help. It lets you set your own schedule. It also makes you feel better, in terms of energy level and general health.
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I went to a class on dialysis and left knowing I wanted to do the PD kind.
The fluid and diet restrictions are less strict. I started out on manual exchanges
which is good to know in case of power outages. Then switched over to the nighttime
cycler. It is great. You must have room for supplies. The PD access site must be washed daily
with antibacterial soap and an ointment put on it. There are swimming and bathing
restrictions. The area where you do dialyhsis must be very clean and free of pet hair.
I hve went on weekend trips and just took what supplies I needed. I have ben told that
if I went say on a weeks vacation the solution could be delivered to the vacation site.
People on the site have traveled on both kinds of dialysis. I have never been on hemo
so can't offer much info there. You can change the kind you do usually if you are
not happy with your choice. Some on the site have. I think I'd be pretty depressed
if I had to do in-center hemo from what I see when I go there for clinic appts.
I'd try to get into a class and do all the research you can. I wish you the best
in whatever decision you make. And we're always here to answer questions and offer
support.
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I was working the first time i was on dialysis. I was only for a couple of years though. I went on the third shift which didn't really conflict with my job. At the time i was married but my wife didn't want anything to do with the whole thing so i did it myself. I was working at a job where i had great insurance. I didn't even know or think about medicare or social security. I was in my 30's then too. Now i am in my 50's and went on dialysis again. I was in between jobs so when i had to go on i didn't have any insurance. I learned real quick about medicare then! The whole process took me around 9 or 10 months to get. I don't work now cause i do get very tired after dialysis. Although recently i have been feeling a little better. The center i go to only has PD and Hemo. I am on hemo.
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id say go with pd for as long as you can. i was able to do more when i was on pd. unfortunately i had to stop after three years because of infections. now im on hemo and i feel more tired and i have less time. It depends on you tho, some ppl do really well on hemo.
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with a GFR at 33 and Creatinine at 2.09
I am just curious as to why you would be going on dialysis with a GFR of 33 . Mine is now at 22 with a Creatine of 2.7 and I still have a while to go. Usually when GFR goes down to about 10 and your EPO shots get up to 1 once a week. Did your doctor ever say why it would be so soon ? Thanks
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My Marvin has tried all three - PD, in-center hemo, and home hemo.
His experience with PD was short-lived, however, because he had problems with the catheters -- first one got kinked, had to be straightened (OMG, that was awful), and then finally had to be removed. With his second catheter, he got peritonitis and almost died from it. Marvin said, "That's it for me and PD." Though we do know people who have done PD for years and years and had no problems.
Marvin did in-center hemo for 12 1/2 years. It's tough. The three days a week treatments make your body go up and down every other day. The night before a treatment, Marvin was "full" (too much fluid) and tired. The day of the treatment, he was pretty much wiped out afterwards -- no energy and required major naps. The next day he felt better, but by that night he was full again. Vicious cycle -- over and over again. Also, going to the clinic, you're exposed to all kinds of things -- germs (from people with coughs, flu, etc.), noises (of people moaning, snoring, vomiting, etc.), and there's no privacy just a bunch of people all sitting in the same room (some pretty close together) and you hear and know everything. Sometimes, you're at the mercy of whatever nurse or tech happens to be assigned to you that particular day, and some are good (very, very good) and some are bad (very, very bad). You have no control and very little say-so in your care (for example, you have a set time to be there, and you usually don't get to pick the time).
We've been doing home hemo since last summer, and Marvin absolutely loves it! We do six treatments a week, so his body stays at the same level almost all the time. He can have a little more freedom with fluids (not a whole lot, but, hey, every little bit of extra is good), and he feels great. He has so much more energy on home hemo, and his labs look great! We like the freedom (we can have a treatment at 6 a.m. one day, noon the next day, and 9 p.m. the next -- you pick the time and fit it into your schedule instead of the treatments mandating your schedule). We also like being in control of Marvin's treatments. This required 3 weeks of training. Also, you have to have a lot of space to store the supplies that you need.
Marvin said he would rate them (and this is HIS opinion, so don't get upset with him):
1. home hemo
2. PD
3. in-center hemo
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i agree with Marvin, unfortunately tho in canada home hemo options are limited