Hi :)

[Wildrose]

Hi all. Just introducing myself per those oh so important forum rules! (no thats not sarcasm) 

I'm a 33 year old mother of three boys. Diagnosed with IGA Nephropathy 15 yrs ago. I am currently in stage 5. Always feared the  threat of dialysis but must admit I thought for awhile I'd squeak by safely.... ha... anyways, its looming right around the very next corner. So much so that I've been forcing myself to watch youtube videos of hemo patients getting stuck with needles, in the hope I can de sensitive myself... so far all thats accomplished is making me want to lose my cookies.  Thats ok, we'll get there (the desensitizing part).

Ok, enough of the weak attempt at humor! I am happy to have found this forum and I've had lots and lots of reading time while waiting for membership approval (which is kind of a good thing, helps to educate myself a bit more before sticking my foot in my mouth).

Ginger (aka rose, I go by either)

[billybags]

Hi Ginger    to the site, sorry you are getting nearer and nearer to dialysis. You mention Hemo,  have you been told about other ways of doing it, like PD and PD. Look into all your options before you make your mind up. Glad to have you on the site.

[Poppylicious]

  Ginger Rose!

[Wildrose]

Hi Ginger    to the site, sorry you are getting nearer and nearer to dialysis. You mention Hemo,  have you been told about other ways of doing it, like PD and PD. Look into all your options before you make your mind up. Glad to have you on the site.

I have  been looking at all the options and its really complicated...  I am of course always open to advice. However, at this time I am extremely overweight and the risk of gaining weight during PD plus the risk of infection are risks I'm not sure I'm willing to take. Also, PD is done at home and we absolutely do not have room in our current home (5 people in 1000 sq ft) for a month supplies, nor room for the cycler in our bedroom... nor a place to move our cats at night (their litter box is in our room and there is no where else to move it) as they can't be around the tubing.

So that pretty much leaves hemo, which I can't do at home either due to the same space issues above. I also hate needles and previously figured I would allow someone else to stick me.... but now after all this reading I'm thinking I will have to learn to self cannulate so I don't have to worry about some technician messing up.

[Rerun]

Hi Rose and welcome to IHD.  I'm so glad you found us.  I too don't have the space for PD plus I have too much scar tissue.  So, I should say I don't have the room for "home dialysis". 

Hope you stick around.  There is lots to learn and contribute.

Rerun, Moderator     

[Ang]

 

 

[RichardMEL]

Hi Rose (I won't call you Ginger as I was more a Mary-Ann guy.... and I've just dated myself horribly!),

Anyway I think you've been informing yourself very well already and have some good reasons for picking hemo as the way to go for you - I can appreciate some of those very issues so, certainly when starting, it is the way to go I think. You've identified something that I feel is key when dealing with this situation you're in - knowledge!!! Understanding can be power - power of your own destiny.

FOr myself when I was on D I found that knowing as much as I could about the process, and stuff like dietry restrictions and not just that they were there but WHY helped me understand better for myself and put it in a context where actually following it made sense rather than a bunch of rules, I could see in  lab results what happened if I had something high potassium (hello peanuts and chocolate!!) and then finding out what THAT would mean (eg: high potassium is very bad mkay) and thus knowing WHY things are done a certain way enabled me to feel more control over my own situation because suddenly there were a few things I could do to influence my own destiny in ways - eg: following the diet to a reasonable degree, leeping track of my own lab values to know what my body was doing, exercising so my heart and other systems could handle things best they could whenit was time for a transplant, and of course just generally handling the pressures of hemo better on a daily basis.

It's not easy. I get that, and with the needles I NEVER looked!!! I used to turn away, think about something else (Hellloooo Mary-Ann!) or talk to the nurse or something. To my (so far) last D session over a year ago I could never watch them stick those things in.. but also I will say after awhile the fistula toughens up and it really doesn't hurt much at all if evetything's ok.

You will face challenges and changes when you do have to start... that is certain, but I'm glad you're here and hopefully we can help you along the way.

Welcome to IHD!

RichardMEL, Moderator

[willowtreewren]

Hi, Ginger!

 

Yep, it looks like you have been finding your way around and learning while you are at it!

There is much to learn! I so well understand the feeling that you could dodge dialysis a wee bit longer. We knew for YEARS that it was coming our way, yet when it arrived it was STILL a shock! 

Looking forward to getting to know you better.

Aleta

[Traveller1947]

Welcome,Wildrose!  I was checking out your blog earlier today--that's some busy life you lead up there in Washington State!  One more reason to try to pray away dialysis!  I was very impressed by the quality and clarity of your writing. Once you're settled in to in-center dialysis, you may find those hours without the distractions of home will be useful for expressing yourself, lesson-planning, etc.  All the best to you in whatever you do...

[Wildrose]

Thank you everyone for the warm welcome, I really appreciate it. I am so glad to have found IHD and even though the circumstances that led us all here are not great, I still look forward to getting to know everyone. I have lots and lots of questions (the gaps in my research, haha) so you wiill be 'seeing' me around. 
Thank you!

Rose

[looneytunes]

Hi Rose...glad you joined us, though I'm sorry you have a reason to!     There are a lot of great people on this forum who will be happy to help you in any way they can.  So post away! 

[jbeany]

 

Yup, that whole needle thing takes a lot of getting used to!  When I started D, I went lightheaded every session, although oddly only when they were pulling them out.  Partly, I suppose, because they didn't expect me to watch them putting them in, but they wanted me to watch them pulling them out so I could hold the gauze on the sites to put enough pressure on the holes to stop the bleeding.  For me, that took quite a while, often as long as 20 minutes, and they were not thrilled that I kept fainting when they wanted to move on to the next patient while I sat there holding the gauze by myself and waiting for the bleeding to stop.  I'd nearly pass out and they had to grab the gauze and hold it themselves instead.

I got over it though, and eventually even learned to stick myself so I could do home hemo.  It took quite a while though!  If you can, I'd suggest asking your neph for a dialysis needle or two to take home.  Get used to looking at it and handling it long before they start sticking them in you - it's easier to get used to it in small doses at a time.

[Ravenwolf]

  Rose and what a familiar introduction. You sound like I did when this little adventure started. It is a good idea to learn all you can up front. I found that the more I learned, the less frightening it became. Hang in there as, it is always scary at first  . However a little experience and you will be relaxed. Good luck.

[Riverwhispering]

  Ginger Rose to our IHD family

[lmunchkin]

Hi Rose & welcome to this family.  Greetings for 2012!!!!  You are on the right track in gaining all the knowledge you can.  My hope is that you can get on transplant list. 

Again Welome & God Bless,
lmunchkin

[CebuShan]

      Sorry I'm a little late in greeting you! I put off starting dialysis as long as I could but couldn't believe how much better I did feel once I started. Good luck!

[Lowilson]

Welcome rose!! Fear of the unknown is actually far worse than reality!! I am overweight in center and after one month 20 lbs lighter and feeling much better than Pre- D. Believe me I was scared prior to starting. Transition is not easy but give it a month and you might be pleasantly surprised  that D  is tolerable.  The support is here to answer your questions and fears. These people have been doing for years and reading the forums and asking questions has helped me.

[kellyt]