new to forum...wanted to introduce myself...and ask a rather important question!

[joseph_towey]

Hello all...
I'm fairly new to this group and as of yet haven't been active in the forum. However, I think that the decision that lies before me now is an important one and I'm hoping that I can get some advice from those of you who have been there.
Allow me to catch you up to speed...
I was diagnosed with Systemic Lupus Erythematosis (SLE) in 1993, at the age of 19. My symptoms included, but were not limited to, the malar rash that is often associated with lupus; constant fatigue; joint pain and swelling; and most worrisome of all kidney involvement (nephritis).
My Rheumatologist began my treatment fortwith, which included high doses of prednisone (which I would eventually be weaned off of), plaquenil, and cytoxan. A fairly standard treatment plan for someone in my shoes. Under this plan, we were able to control the lupus for a number of years.
However, this past December, while visiting my family for the holidays, things took a turn for the worse. I thought that maybe I just had a cold as the flu seemed to be going around...but after a few days my nagging cough turned into my gasping for air and coughing up blood. My parents immediately took me to the ER where I was admitted and a kidney biopsy was scheduled for the following day. As the night progressed, my breathing became more taxing and so the decision was made to perform a lung biopsy as well. To make long story short, while I was undergoing my lung biopsy, my kidneys failed...I woke up nearly a month later to learn that I would now need to be on dialysis.
Well, I have now been on Hemodialysis for two months. And today I met with a surgeon to discuss replacing my perm-cath with a more permanent access (ie fistula or graft). The doctor provided me with some basic information regarding each, as well as the obvious advantages and disadvantages. He also mentioned that he thought I would be a good candidate for Peritoneal Dialysis (PD). Lastly, he mentioned that I should also consider a transplant.
What I'd like to know is this...
Were one of you in my situation (and I'm sure some of you have been) which would you choose and why? For those of you on PD, I'd like to know what you consider the advantages and disadvantages of choosing this option. Same for those that have had a transplant. Any such advice, comments, or encouragement you could provide would be greatly appreciated. Thank you.

Joey

[Sluff]

Welcome Joseph,

I wish I could help you in your decisions but I am pre-dialysis. I know several members including one of our Administrators Goofynina who chose PD because she can do her exchanges when it fits into her schedule and PD is also more forgiving on the Renal Diet.

I hope you enjoy your stay here is an enjoyable one. Hope to see you active in the forums.

Sluff, Administrator

[goofynina]

Hi Joey,  Welcome to ihatedialysis.com, awesome introduction my friend.  Wow, i am sorry for all you have gone through but i am so happy you have found us.  I have chosen PD (was on hemo for 3 years) and i LOVE IT.  I really do hope you look into your options, there is alot of information in this thread here:  http://ihatedialysis.com/forum/index.php?board=25.0.  I so look forward to hearing more from you and never hesitate to post any questions, comments and/or concerns of your own.  Take care and see ya in the forums  


Goofynina/Admin.

[kitkatz]

Welcome to the site!  I hope you will sit down and read for awhile.  We have much information here!





Kitkatz,Moderator

[boxman55]

welcome to IHD if you want you can e-mail me and I will discuss my history with fistula's I have been on Hemo for 7 months and am trying to get on the transplant list. Look forward to hearing from you Welcome again------Boxman55

[rimbo74]

Welcome Boxman,

Although you are an aggie (im a red raider)    I decided to go with PD.  I'm not in the same situation as you but doing PD at night while I sleep is the best advantage of PD.  Knowing that when you wake up in the morning, you are pretty much a normal person (except tube).  I have now been on it for a couple of months and its really not that big of a deal now.  Some disdvantages is that the machine can alarm at night which will make for some sleepless nights.


Good luck with everything and keep us posted on what you decide!

[kelliOR]

Welcome Joey,

Although you are an Aggie,  (I'm a Longhorn), I went with in center hemo.   I have a big family, 5 kids.  It wouldn't have worked in my house.  Plus there are issues from childhood when my dad was home-hemo in the 70's.  Long story....

Anyhoo,  glad to meet you, and good luck!

So..........to you and rimbo Hook 'em Horns!   (Oh yeah.......... Nat'l Champs 2005) 

Kelli

[Zach]

Welcome to the site.  Lots of different stories here.

I've been on hemo for a few years, so I guess that means I don't hate it.  Hate requires too much energy to waste, so I've used that energy instead to start a film production company.

Good luck on any choice you make!
 

[tamara]

Hi and  ,

Great Intro, Just how the Boss would have like it !
In regards to your decision, make sure it suits your lifestyle, don't let dialysis run your life. I'm on nocturnal hemo, on every second night for
8 hours, and am able to work because of it, have more time during the day for my own leisure as well. Sure there are some sleepless nights but its worth it.
Ask heaps of questions, to us, your doc's, social workers, bug us all, it will only help you in the end to make the best decision for you.

Anyway see you around the forum, or maybe in the chatroom, where we have a lot of fun on many topics, and just goofin around, which I have found is the best medicine for us.

Tamara xxx oooo 

[anja]

    Joey, I am partial to PD and am not on the transplant list.  The immunosuppressives can have side effects that I am not willing to trade off for at this time, namely diabetes and cancer ( several ppl in my family have had to deal with Cancer so it is already a possibility ~ I figure why push it???)  Glad you are getting information and patient input before making your decisions.  Best of luck.

[kitkatz]

Go read in the tranpslant area to answer some of your questions regarding pros and cons of transplants. We have had some major discussions over there.  Also maybe do a search of the site on transplants.

[Joe Paul]

Welcome Joseph, good to have you aboard.

[Wattle]

Joey,

Its great to get many opinions before you make your choice. An informed decision is always the best one. Ask every question you can think of even if you think it is silly. Bug your doctors and always ask "why?"

I chose PD. There were many reasons why I made that choice. Namely I do it at home and did not want to do Hemo in front of my kids. Like Kelli there were childhood issues with my father having done Hemo at home.

Choose the treatment method that is the right one for your lifestyle. Don't let dialysis become your life.   

[Hephs-little-lady]

Hi Joey & 

It's good you found us, I think you'll find this site very helpful. Their are so many people here with so much valuable experience to share. I hope & pray you find the answers to your questions and a little help along the way to making your crucial decisions.

My husband is on PD on the night cycler because it fits around our life. Like some others on here have said, fit dialysis into your life, not your life into dialysis. Don't let anyone, especially doctors pressure you into what they think is best, make you own informed decision to suit your life and plans for the future.

 

[kimcanada]

Hi Joey & 

I think that what you need to do is get all the info on the different types and then make the best decision for you, we all do have something in common with dialysis, but our lives are all very different, and what you need to figure out is what is the best fit for your life.

I am sure you will make the best choice for you

Kim

[Bajanne]

I would like to welcome you to our community.  I can't help with the other thing - answering your important question, since in my country, the only option is haemodialysis.  But there are so many people who can help you here.  There are thousands of helpful posts concerning all the things you might ask.  Look around.  Also, keep posting.  Let us know how you are doing (in the General Discussion Section).
Welcome again.



Bajanne, Moderator

[Hawkeye]

Welcome

[melshell]

Hi and WELCOME Joey!!
Great intro!! I'm a PD'er since 12/06, never tried hemo, but I would definitely recommend PD. As everyone else has said, you should familiarize yourself with each type of dialysis and see what's right for you. I happened across this site while researching my options, and it's FULL of great information and personal experiences from actual dialysis patients and their families as well as some care givers. Plus, the folks here are very knowledgeable and very supportive. Something I found very helpful when I was trying to decide was visiting a dialysis center. I toured the facility and was able to meet with the PD Nurses, and actually got to speak to people who were doing hemo, and PD. I'll briefly list some of the advantages and disadvantages of PD from my brief experience, as well as some things I wish I'd known to ask/request of the surgeon who placed my cath. Advantages: more liberal diet and fluids, performed at home- generally at night while you sleep, can continue to perform most normal activities even while connected-kick back in your favorite chair, or even go outside, alot of mobility, alot of flexibility in scheduling-no certain time to get connected (just have to spend required number of hours), you are in control, you don't have to get dressed, don't have to go anywhere, and you can have as much company as you want-no limit to visitors, or as much privacy as you want,travel is possible, and a lot easier-throw your supplies in the trunk and hit the road-no headache of calling ahead and making arrangements for treatment at an unfamiliar center, PD Nurses on call 24 hrs for questions or concerns. The ABSOLUTE best advantage is that your days are free, you are dialyzing daily which to me is more natural, more closely resembling what your kidneys would be doing naturally-a lesser build up of toxins, and you can live a more normal life. Disadvantages: surgery to place the permanent catheter, surgery to remove it (not bad-usually same day surgery), altered hygiene routine until it heals-I had to do sponge baths for a while, really missed my showers, the tube protruding from your abdomen takes some getting used to (the actual catheter is about 3-5 inches long I'd say, and with the patient connector you're looking at about 8-10 inches I'd guess...)I'm still coming up with all kinds of creative ideas of what to do with it when it's not in use to secure it, and keep it outta my way!, they tell you not to do any heavy lifting, and to forego abdominal exercises to keep from upsetting placement, there's daily exit site care, you have to have room to store supplies (usually around 40 cases of rotating supplies/month), you have to be as sterile as possible when connecting and disconnecting to prevent infection, and of course, the biggie-you have to tied to a machine for 8-10hrs every night. The actual dialysis takes some getting used to as well: approximately 2L of solution is pumped into your abdomen during each fill cycle, it's like guzzling a 2 liter and it's uncomfortable at first, until your abdomen stretches. The dwell cycle can be uncomfortable-the time the solution sits in your abdomen--it kinda feels like you've just overdone it at Thanksgiving...There's something called drain pain that you may or may not experience when the solution is emptied which feels like varying degrees of pinching/cramping-not all people experience it. I'm still figuring out which solutions to use when, you are in control of the strength of your dialysis which you decide daily based on your wt., blood pressure, and fluid retention...You'll be trained to do all that. Of course alot of folks talk about restless nights from alarms, but that subsides, and you do have to get used to sleeping near a machine that can make all sorts of weird sounds at times, and you'll have to have somewhere for the machine to sit (you might want to look at the home setup thread, it has some pics) Some things I wish I'd known to request/ask the surgeon: If possible, make sure the surgeon is aware of your waistline, where you wear your pants/jeans-it can make all the difference in being able to wear clothes-I wish he'd placed mine even an inch lower!!-ughhh If you've always slept on your right side, then ask him if he can place it on the left. And finally, regardless of the instructions the surgeon gives you for after care, consult your PD Nurse for instructions-they almost always differ. I wish you the best of luck, please do keep us posted on your decision!!

[MyssAnne]

Melshell gave some wonderful adivice. I have nothing further to add other than I use both manual and cycler. I go back and forth from one home to another, and it's just easier to not tote the cycler around. So, do be aware you DO have the option to use both at the same time, even on the same day. For instance, if I'm traveling from one home to another, I may start out on the cycler (my home), and end up using manual at the other home.  It's nice, that I have the option to do that. As for sterility, that is very true. You do NOT want peritonitis. Trust me. Anyone else here on the forum will tell you. It is extremely painful. If it sounds as if the PD nurse is a bit overboard on the steriilty bit, so be it. She isn't. It is vital you are as clean and sterile as possible. Other than that, I like the convenience of it.

[goofynina]

Please keep any info pertaining to PD here in this thread: http://ihatedialysis.com/forum/index.php?board=25.0   Many other users may not come to read this and there is some very important information here.  Would you please copy and paste this in the Home Dialysis (link provided) so others can get a chance to read it as well?  We like this thread to be solely for welcoming new members.  Thank you for your understanding. 


Goofynina/Admin. 

[Ken Shelmerdine]

 

[MattyBoy100]

Hi Joey,

I have been on in-centre hemo for nearly year now.  I have never done PD.  I was given the choice and I didn't like the idea of having a catheter permanently sticking out of my stomach.  I have 4hr treatments 3x a week and that's it.  I am not constantly exchanging bags etc.  You are more limited with travelling as well as fluid restrictions on hemo but if you do home hemo then the fluid restrictions are not so bad.

If you go for PD be aware that you have to have somewhere to store all your supplies and it is a LOT of supplies.  Ultimately it is down to personal choice but also be aware with PD your stomach may swell with holding all that fuid all the time.  That put me off as well.  If you ask people about it they will tell you they feel like a walking water bed!

[Jill D.]

Hi Joey  ,

I was never really told of options other than in-center hemo from my my neph, but that could be because I was only going to have dialysis for a few months since my transplant was in the works. When I heard about PD, my initial thoughts were: I did not want a tube sticking out of my belly, and I didn't want to bring all of that dialysis stuff into my bedroom....with hemo I could keep it from taking over my life too much. However, after learning more on this site, PD sounds like a good long term option for many people.

[melshell]

Oooops!! Sorry goofynina, guess I got carried away! I'm not sure I know how to copy and paste it....can u fix it for me?

[Sluff]

Oooops!! Sorry goofynina, guess I got carried away! I'm not sure I know how to copy and paste it....can u fix it for me?

Done here it is : http://ihatedialysis.com/forum/index.php?topic=3272.msg46812#msg46812