short and sweet

[graftgurl]

I spent the last 1 1/2 hours ranting and raving in a post for this message board. I hit preview to see how it looked and when I saw something that needed correction I clicked on it. Yes, I clicked on it IN THE PREVIEW WINDOW!!!!!!!   
Well, it totally erased everything I had so carefully put in words.        I guess I am worse than usual when dealing with technology when it is 6am and I am tired and hungry and my brain hurts and now my pride hurts, damn it. Does this look familiar? ------> 
I'm taking a break to eat and sleep and whatever else my addled brain thinks it needs at this time. I hope everyone else got some sleep. 
I'll be back (aaaaaaaaaghhhhhhhhh, everyone runs away screaming)

[RichardMEL]

oh man (gurl!) I hate that when that sort of thing happens. What I tend to do these days when I type something really long is to copy & paste it into a notepad or something on my PC "just in case" and keep it until it's posted properly.... that's saved me a number of times.

Did you try clicking "back" - sometimes the text is retained and you never know.

Sorry for that frustration! I know how it feels...

hang in there!

[aharris2]

...or just a plain old "control c" to copy it into the clipboard until i see it safely posted. I have found that the longer the post, the more likely I am to somehow lose it into cyber never-never land.

I feel your pain!

[twirl]

been there; done that
it is painful go gurl  you will be fine

[paul.karen]

And i thought it was ust me.

Get some rest and hope to see you later.  At least we got some ideas of how to save long writings....

[Bajanne]

Notepad is a very good idea.  I always have some Notepad document on my desktop when i have a long post or one giving trouble.  It works.
By the way, when you make an error, CTRL - Z can also be helpful and bring everything back.

[graftgurl]

Guess what? I'm still awake...are you surprised? Yes, sarcasm once again. I think exhaustion brings it out in me. Thanks for all of the tips on posting. Now if I can just remember to do those things when it is appropriate. That is the one symptom of renal failure that is hanging on despite dialysis - I feel like I am losing my mind   
I have to write lists and reminders for myself and then I have to write another note to remind myself where the list is at.  Or looking all over the house for my glasses only to find them in the very first place I looked or have my daughter tell me they are on top of my head       I am not a stupid person but this stupid disease sure makes me feel like I am some days. OK, I am going to give in and take some medicine to help me sleep. Zzzzzzzzzzzzzzzzzzzzzzzzzzz...(positive thinking)

[RichardMEL]

G'day gurl,

You've had some real trials and tribulations happening there.... I might be tired and missed it but how come they've put a graft in your leg? Why not in your arm? And how come a graft and not a fistula? I'm sorry to read all the problems you've had - it seems like a neverending struggle... but I still hope you can find the bright things to hang on in life like your daughter and other things to help keep going... and hopefully our community can be a support to you also

Hang in there... and get some sleep soon!!!
 

[paris]

I think many of us can relate the memory problems.   If one more person says "you remember"  I will scream!  I don't remember.  So, it looks like you are really good company here.  Now I am going to take notes to remind myself what to do when I lose a post before posting! 

[graftgurl]

I love this group!! It has been so cathartic to just be able to write about my experience with dialysis so far, so the support has been an added bonus. Thanks everyone.   


RichardMEL wrote:  "You've had some real trials and tribulations happening there.... I might be tired and missed it but how come they've put a graft in your leg? Why not in your arm? And how come a graft and not a fistula? I'm sorry to read all the problems you've had - it seems like a neverending struggle... but I still hope you can find the bright things to hang on in life like your daughter and other things to help keep going... and hopefully our community can be a support to you also

Hang in there... and get some sleep soon!!! "

It has been a long and tiresome road for me. I have to admit there were times I just wanted to give up because nothing was easy and it all seemed to require a fight to get what I needed to survive. I have realized that if I don't take care of myself, I can't be here to take care of my daughter and that would be tragic. I want to be around as long as possible to see her grow up and experience good and bad with her. She was my miracle child and she is my inspiration now to continue to fight to live.   

The vascular surgeon put a graft in my leg because of some other medical issues. I have had poor veins for at least 15 years and when my health began to go downhill and I required more care and numerous labs, the doctors put in a central line (similar to a permcath used for dialysis). I had several over the years because in the beginning a few either clotted off or became infected. In May '07 I had a huge complete blockage in the superior vena cave near my heart. It took them over a month to finally diagnose the problem and I suffered terribly. I had done research online about my symptoms (which I do quite often) and insisted the doctor do a CT scan. At the time, they thought I was having an allergic reaction to something because some of my symptoms were similar - fine red rash on upper body, swelling that started in the face and neck and progressed to everything above the waist, veins sticking out in my neck and chest, fatigue, exhaustion, ringing in ears, shortness of breath even when resting, etc. I was treated with so many different medications in an attempt to make it better, but to no avail. I made numerous visits to the ER during that month and was even given shots of epinephrine to stop the reaction. Since it wasn't an allergy the shots had no effect except to make my feel worse. My doctor was very hesitant to order the CT because he felt it was too expensive a procedure for an allergic reaction. I pushed hard for it and finally he gave in, altho reluctantly.

I had the CT done and the results were to be sent to my dr. the next day. I don't live very far away from the x-ray center and on my way home I received a call from them. I was told to go to the hospital immediately. There was a complete blockage in my superior vena cava which is an emergency situation. I was told I was very lucky to still be alive and functioning. I didn't even have time to go home and grab slippers, meds, etc. for the hospital stay. It took 7 days in ICU and 3 surgical procedures to save my life, including an angioplasty and removal of my central line. I had to begin taking blood thinners so my veins would not clot again. They did not want to put another line in right away and so I returned home without one. That November I had a stress test to see how my heart was functioning. The results were abnormal and so I had to go back in for another angioplasty to a different part of my heart. They cleaned the veins out and had to put in 2 stents to keep them open. I went home on a different and supposedly better blood thinner and was told I had to take it for at least a year.

So, it came time to get ready to begin dialysis. After all the problems I had with clots in my upper body and such bad veins, they realized it would be detrimental to my health to put a fistula in that area.    My legs were my best option and taking into account the weak veins I had, they decided a graft would be best.  There is not one other person at the unit I dialyze at who has a graft. As usual, I am the odd man out, errrrrrr woman out  

So here I am, the opinionated patient and stubborn to boot. I have refused to give in and give up and I truly believe it is my stubbornness and the thought of my daughter growing up without a mother that has kept me alive. Hey! whatever works, right?

 
 
 

[monrein]

Great attitude gurl and right on the money.   Push push and then push just a tad more.

[RichardMEL]

Thanks for the explanation gurl.. I've never seen anyone with an access in the leg so that must be somewhat unusual (but I have heard of it). Is it in the upper or lower leg? guess you'd have to wear a skirt or shorts to make that one easier.... bleah!! Not so good in winter hey??

I think that you've been through SO MUCH and survived so much says so much about you and your constitution..  you're a fighter and you've definitely got that spirit (and you'll fit in just fine here!!!)

Glad that just sharing your experiences has helped YOU feel a little better (getting it off your chest as it were) and you know there are people here who can relate, in part, to your situation and ordeals...

we want you to be around to see your daughter grow up well into adulthood for sure!!!

 

[graftgurl]

just because I'm replying 3 days later does NOT mean I have been asleep that long!!!   

RichardMEL, the graft is in my right thigh. I wore shorts to dialysis all summer (it was unearthly hot here - 20 record high's over 100*F), but now it is starting to get cold at night and only warming up into the 70's-80's during the day. That means it is quite nippy when I head to dialysis. So far I have worn warm-ups with shorts underneath or I've worn jeans and changed into shorts. I have done some research online again (yes, again!) and I think I may have a solution to my apparel problem. There is an online store that sells warm-up shirts and pants with zippers in the arms/legs/chest areas. You can order one with only one zipper near your access. However, they want almost $40 for a pair of bottoms.  I think NOT!! 
So, I am going to buy a reasonable pair of warm-up pants and a zipper and have a friend of mine put the zipper in the right leg for me. I have to do it soon too because this morning I wore my warm-ups to dialysis and guess what?  I forgot to take my shorts.     I ended up rolling up the pant leg to my thigh and I had to stretch out the material because it started out kind of tight and the dialysis machine kept alarming about arterial pressure. Once again, I lost my mind...
What was I saying?    So yeah, winter is going to suck unless I can figure out this dilemma soon. Until then, I will place a pair of shorts in the bag I always take to dialysis (I have to have some snacks, glucose meter, medicine, book, headphones for the TV don't I?) so I won't have to face that situation again.

Thanks again for the support. I guess I have just refused to give up. Don't get me wrong, I have definitely been depressed and sad at times. Thee have been mornings I did not want to get out of bed, and I haven't. There was a short while I wasn't able to spend much time with my daughter due to my health problems and it made me realize something. I cherish each and every moment I have with her and even though she may not say it out loud, I know she cherishes those moments too. I was so scared to tell her this summer that my kidneys were kaput and that they had put the graft in. That they wanted me to start dialysis a month ago but I had put it off until the time was right so she would only have to deal with one thing at a time.
It had been several years since we had gone on vacation and never just us two. So I took her to the beach, and on the drive back I told her everything. I worried that it might be too much for her to handle and that being a Type 1 diabetic too, that she might see herself in my shoes down the road and that it would terrify her. Well, she set me straight in a hurry. She looked at me with this exasperated stare and said, "You've been feeling horrible for the last month because of this? Because you waited? Mom, you have the power to feel better and I want you to start dialysis as soon as we get home from vacation." I about fell over. She wasn't worried about how it was going to affect her, she wanted me to feel better for a change. That night I cried and I told myself there would never be anythin withing my power that would stand in the way of me being the best I could be so I could take care of her. I won't go down without a fight      Sorry, comic relief here ----->  "Be all that you can be, in the ..." 

Boy, I didn't realize how long-winded I could be. Yes, I know it's eeeeeeaaaaaaaaaaarrrrrrrly in the AM!  Off to bed...I mean off to the recliner (swollen leg, remember?).

[BRANDY]

Hey  Gurl  I may have the solution to your problem    hope so   Slit your pants where you need it and put velcro  it will work wonders. It would be right for dialysis  and you will still be warm   Just a thought

[RichardMEL]

Wow Gurl! Your daughter sounds like a real credit to her mother (and just a fantastic person) to have such a caring and mature attitude - specially given her own circumstances. You must reallly have a warm and loving bond and that's so very special.

your apparel dilemma is a bit of a doozy. I like the idea of the velcro slit.... that gives 'em access and keeps you warm... specially in a dialysis unit. And it would save you changing in and out or forgetting bits and pieces (although I wouldn't have a problem if a girl near me forgot her shorts!! hehehehehe )... I do hope you solve the situation soon because yeah... winter is not a fun time to deal with that stuff ON TOP of everything else... so good luck!!!

[graftgurl]

Thanks RichardMEL and BRANDY 
Actually I had thought of something similar to the velcro suggestion and the more I think of using velcro instead of zippers, the more I like the idea. Zippers can be cold on cold days and that is the last thing I need to deal with during dialysis. So barring any problems, I will have a friend of mine help me to put the velcro in the leg like you suggested. And none too soon!!!! It is supposed to get in the upper 30's tonite, 50's tomorrow, and below freezing Saturday night. BBrrrrrrrrrrrrrrrrrrrrr!! I get chilly just thinking about it