I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: girl-x-treme on February 17, 2007, 06:46:52 PM
-
Hello, I am Jennifer. A 34 yr old mother and wife whose brand new to dialysis. So new I am like a dialysis infant. My nurse Becky at UofL told me I am the first dialysis patient to start dialysis on the home machine. I dunno how true that is but I have been dializing a total of two weeks now. - in training
They attempted to put a fistula in my arm but my veins were too small so they had to ligate and now I have steal syndrome in my right hand. After that little episode they told me I had to do PD. I was totally freaked out considering my lifestyle. You see, my children AJ - 10 and Suzy -6 are both rappellers, backpackers, and Rock climbers like me. I believe in Nature Deficit Disorder and I refuse to let my kids become video game junkies and house hermits. Anyway we travel on a monthly basis to our fav National Park where we do "our thing".
But now dialysis is starting I am afraid that there are no more backpacking trips for us. Check us out on www.myspace.com/hikeatrail Its a real bummer for me and something I am having a hard time with emotionally. So I threw fits to my nephrologist and my surgeons to put one in my leg. I just couldn't bare the thought of the whole stomach thing. I am strong but not that strong. So we did the surgery and it went great. So great infact my nurse just can't seem to get over my arterial pressure. Its great apparently. However, my venous side is a stubborn little *&%$#&*. Looks like a war wound down there but I'm not bitchin cause I get to do everything myself! Since its in my leg both my hands are free to do everything but I have a hard time reaching the machine sometimes.
I will be so glad when I graduate from training to the house because I live an hour from UofL KDP and driving up there every day is really straining the wallet. I got a brand new recliner to go with my machine - I'm so excited! and thankful for NxStage. My children are very young and I just can't imagine what life will be like with out our backpacking trips but at least I can still travel and stay in primitive accommodations. No matter how positive I try to be things will never be the same again for any of us and the mother win me wants to shelter the kids form it but how can I do that when it'll be in their face everyday. I am currently scheming a plan to concoct a small mobile generator so that I can take my NxStage down some easy trials like Star Gap or MoonShiners Arch so I won't have to lose my camping trips. I'll let you know how it pans out on Easter. Check me out on myspace, I do amateur photography and you can find that there as well.
UPDATE 2/23/07
I just finished week three of my home training. Its going well and I picked up on everything very quickly. Most NxStage patients have a support person there with them but since my access os in my laeg I choose to work alone. I do my own stickin and I set everything up and get everything ready with absolutely no help. Not that I don't have "people", I just prefer my independance and I must say its going beautifully. I did indeed infiltrate once but thats good for experience sake, and . . btw . . I handled it quickly and properly so yea me. I was supposed to bring my machine home today but due to those circumstances I don't wanna! Had to start a new button hole for the venous stick. Its been two days now and all is well. I just need to form the hole and that won't be a problem.
The clinic I attend is the only non profit clininc in the city of Louisville (go Cards!) and they tend to patients who don't have much or who don't have people to support them. I am very lucky to have my NxStage and thankful I have people there for me if I need them but mostly I'm thankful for the ability to self dialize. They are currently selling hooded sweatshirts at $20 a pop to raise money for their patients so I'm gonna turn on my sellers charm and see what I can do to help.
Still dealing with the emotions of this life altering disease but movning on just the same. The kids are great but I still have one more week before I have to start watching for changes in behavior due to them being suddenly exposed to DIALYSIS.
oh yea- i bought a giant recliner to chill in whilst I run my electric kidney :)
-
Hi Jennifer
Welcome to IHD. I started dialysis a month and a bit ago myself so I totally understand how many changes you are going through, you seemed to make some great decisions on your dialysis. Good for you
Kim :welcomesign;
-
:welcomesign;
-
:welcomesign; and I looked at your MySpace. Nice.
-
Hi Jennifer,
Welcome to IHD. You made a great choice with NxStage, I've heard a lot of good things about it.
TTYL
On my way over to MySpace.com/hikeatrail :)
-
Girl-X-Treme welcome to our site. You have a great attitude. Don't let dialysis beat you. You can live with it. At least you are not in denial like I was (Probably still am). Most people like PD because it allows them to live a more normal life. But, maybe NxStage has that beat. Yes, please let us know how Easter goes.
I'll go to My Space and check this out.
I hope you find our site informative as well as entertaining! :welcomesign;
If you haven't already you might start by reading the site rules: http://ihatedialysis.com/forum/index.php?topic=540.0
Rerun, Moderator
-
:welcomesign; Good to have you here. Dialysis will change yuor life some but don't let it control it. Hubby has been on dialysis for 10 years and it has just become a part of our life . He doesn't live for dialysis he livesa normal life because of dialysis.
-
What a nice Introduction Girl-X-Treme,
Your positive attitude will help your children accept your new lifestyle. If anyone can deal with that you surely will.
I hope you stay as active as you can and remain positive.
It's great to have you here at IHD.
Sluff, Moderator
-
Welcome Girl-X-Treme, good to have you aboard.
-
:welcomesign; That's a good idea to keep your kids active rather than letting them become couch-potatoes! Great job!! :2thumbsup;
-
Hi girl and welcome to the site. Your story is an interesting one and will motivate alot of other patients to go where they thought they couldn't. Please keep us posted on your efforts to get an NXStage operating in a semi portable mode.
You sound like the ultimate transplant candidate and if you choose to go that route I suspect you won't be waiting too long. Take care and welcome.
-
:welcomesign;
-
:welcomesign; Jennifer i hope you enjoy your stay here on IHD...keep posting please
Rolando
-
Welcome to IHD, Jennifer! :welcomesign; I love your attitude - it's going to serve you well no matter what you do!
-
Hi girl-x-treme I'm boy-x-treme well at least thats what "rerun" called me when she replied to my introduction. Actually my name is "billoggblog" but you can call me bill. (check out my story)
As you will read, I've been on dialysis for 12 years (with a 3 year break) and I know exactly how u feel, being a bit of an outdoor junkie myself.
I'm here to tell you "DON'T PANIC" OK you wont be able to go 3 day hikes in the wilderness in a tent!!! but, providing u don't go up really really steep mountains you'll be quite surprised how far you go, at a "slightly slower pace Than your normal" Get yourself 2 spring loaded walking sticks and get others in your group to split your gear between them.
3 Years ago I did a fund raising hike which included 3 Munro's (A Munro in UK is a hill over 3000ft) and the distance was 18 miles OK it took me the WHOLE day, and I was in the last group home (normally I led the group) but, who cares at least I did it!! I know plenty so called "Health People" who couldn't do that ???
I have a holiday caravan in the foothills of the Grampian Mountains and The Cairngorm Nation park is only 10 miles away (people go there in the winter to train for climbing K2 and Mount Everest) I am on APD and take the machine with me Every weekend and escape.
Also, I have been reading a lot about NxStage, sounds really good!! (Not available in the UK Yet!!) but, when it does I'll be there
SO go on! keep as fit as possible, walk as often as you can look after you're body, exercise those muscles and before you know it you'll be "Out There" :2thumbsup;
-
Welcome to our community. We are glad to have you with us, and we look forward to hearing much more from you. You seem to lead such and interesting and 'out there' kind of life. Please find ways to work around this dialysis thing. I love the way you are bringing up your kids - the world already has its quota of couch potatoes.
Keep posting. Remember that this is a good place to vent when you need to. There are people here who understand exactly what you are going through.
Bajanne / Moderator
-
Hey Jennifer,
Welcome to IHD. :welcomesign;
I hope yuo love your Nxstage. I love mine.
Mike
-
Suitable that you call it your story and add updates! I will have to check back often! Too bad we don't get notifications when you edit so you should post new when you are updating! Great post!
Have you checked out Epoman's story? http://ilovenxstage.com
UPDATE 2/23/07
I just finished week three of my home training. Its going well and I picked up on everything very quickly. Most NxStage patients have a support person there with them but since my access os in my laeg I choose to work alone. I do my own stickin and I set everything up and get everything ready with absolutely no help.
-
:welcomesign; Sounds like your doing great... that will rub off on the kids and they will be great too! :2thumbsup;
-
:welcomesign; Jennifer I think you are awesome and inspiring!! Looking forward to hearing from you.
Earlinda