Reliving the day I started dialysis...(not really dialysis-related, I promise!)

[shay_pcb]

The day I started dialysis started as a normal day. I went to work, but I had to leave early for an ultrasound appointment on my blood clot in my leg. So I went in and had it done. They told me to wait around bc they needed to call my doctor. I though, "That can't be good." They said that I have almost NO blood flow to my leg and that the blood clot is SO big that it almost goes to my heart. So I wait around, and I end up being directly admitted into the hospital. I was in there for a week, I think, in April '06. While I was in there, they decided to go ahead and externalize my PD catheter and start me on PD. So that's when I first began PD.

The reason I call this "Reliving the day I started dialysis" is bc I have to go back to the exact same place to get the exact same ultrasound done again. My blood clot has been bothering me. My leg stays swollen, and the veins are bulging out worse than ever. It hurts a lot too when I walk even short distances. So I'm getting an ultrasound done to see if it's been getting bigger still. I've had the blood clot for 3 years now...almost 4, I think. The only thing it's done since I got it is get bigger. It starts above my knee and goes almost to my heart. It's kinda scary, me being only 19, you know?? Anyway, just needed a little support and thought I'd let you know that they'll prolly freak out about the blood clot again and try to put me in the hospital. So if I'm not around after Thursday, then you know why! lol

[angieskidney]

I would be terrified to be told I had a clot that huge. I don't know much about clots other than they kill. Do you ever get stressed over it or worry? I mean, I am sure you do, but I guess I mean to ask, how do you deal with what you have been told? I guess we all just deal with the fate we are dealt but sometimes it is scarey and I am glad my health is not worse than it is.

Hopefully they tell you they can do something to improve things for you Shannon! I know it would change more than just the clot if they could do something about it! 

[tamara]

Good Luck Shannon, hope they can do something for it 

[jbeany]

 Hang in there!
 

[nextnoel]

Hope all goes well with your ultrasound, and that they can find a way to relieve some of your discomfort!     I'll be thinking of you!

[glitter]

Good luck kiddo...you sure have alot to deal with, hopefully they can find a way to help you   

[kelliOR]

Shannon, that must be scary.  Hope things go well tomorrow.   Kelli

[Rerun]

Shay can't they dissolve the blood clot slowly over time?  How does your leg get regular circulation??

[shay_pcb]

I've been on blood thinners for the entire 3 years that I've had the blood clot. They thought at first that it would get a little smaller and maybe eventually dissolve, but it's only gotten bigger. It started out from right above my knee to almost my hip, and now it almost reaches my heart. It does scare me, but there's nothing I, or anyone else, can do about it. So I just do as much as I can and try to have fun!!

My leg gets circulation through the superficial veins. They said that that's why my veins bulge so much and are so visible. Since the main artery in my leg is clotted, the blood goes back through the little veins but it takes longer bc of how much smaller they are than the artery it's supposed to go through, so it makes my leg stay swollen. It's very uncomfortable...

I have had a lot of people tell me about vein transplants, or something like that. I don't think it's possible for me to get that either though bc of my tendency to clot. The scar tissue from the transplant would just cause more clotting, so I don't think that would work either. I was told that I would have this blood clot for the rest of my life and to get used to it. It's bc I'm so young that they are scared to do anything with it. Actually, they tried to put a filter in to keep it from actually reaching my heart, but they said that there was already too much clotting to do that. I'm just kinda stuck...I really don't want to end up in the hospital again after this ultrasound bc I'm already behind in school bc of the 5 day bleed I had. *sigh* My life really sucks...Can't ANYTHING go right???

[Rerun]

That is pretty serious.  I hope they have some good news for you.  Hang in there and know that we are here for you.

                                             

[shay_pcb]

  Rerun and everyone else who replied!! 

[Joe Paul]

Sorry to hear this Shay, like you don't have enough to think about. Ill be praying for you, and the Doctors who will be working with you. 

[Amanda From OZ]

Sorry to hear shay... hope all goes well..... do they know how or why it developed ?

[goofynina]

Shay, just remember one thing, you have one hell of a support group here at IHD that are always thinking of ya girlfriend,  you go out and you have your fun my friend,  Take care and Godspeed  

[shay_pcb]

Sorry to hear shay... hope all goes well..... do they know how or why it developed ?

I have 2 gene mutations, as they call it. Factor V (five) Liden and Prothrombin Gene Mutation. They are both genetic mutations that cause the blood to clot faster. It is genetic, yet no one else in my family has problems with it but me. I'm the lucky one with ALL the problems...

BTW, I dunno if maybe I wrote it wrong, but I'm just going for an ultrasound. The reason I'm nervous about it is bc the last ultrasound I had I ended up in the hospital. I just don't want to go in the hospital again. There's not really anything the doctors can do about the blood clot bc of all my other problems, so I've grown used to it being there. Thanks for all the support though! It does help!! 

[jbeany]

Remember - you have the right to refuse treatment - especially if they don't have any idea what they are talking about!

[kimcanada]

Very best of luck Shay, that is so much for a 19 year old to have on her mind, but I have been reading your posts since I started here, and you are wise beyond your years, you will make the be decisions for you   


Kim

[shay_pcb]

  VERY much Kim!! I've actually been told that a lot, but others here seem to think I'm very naive. I wish I could change those people's minds, but they are set in their ways. I seem immature at first, but get to know me and I'm really not! lol Anyway, Thanks for all the support everyone!! 

[Chicken Little]

That's a pretty scary thing to deal with at any age.  I hope it goes well tomorrow.  I'll keep good thoughts for you.     

[shay_pcb]

Thanks everybody! I'm about to have to go hook up so that I'll make it in time, so I won't be back until after the appointment, if it goes well. If not, then it'll prolly be a few days. Someone will kepp everyone updated if I end up in the hospital. Thanks again everyone!! BBL

[Wattle]

 


Goodluck Shay. I hope you get to stay OUT of hospital!

[Bajanne]

Please be assured of our caring thoughts and prayers.  You have a lot of guts and we are rooting for you.  Please keep us posted on your progress.

[kitkatz]

It's raining and pouring over in your life.
I hope it gets better.
Blessing and light being sent.

[angieskidney]

Thanks everybody! I'm about to have to go hook up so that I'll make it in time, so I won't be back until after the appointment, if it goes well. If not, then it'll prolly be a few days. Someone will kepp everyone updated if I end up in the hospital. Thanks again everyone!! BBL

Did you let Rerun know how to contact you if you should be staying longer than anticipated?

[shay_pcb]

...I'm in shock....Obviously, I'm not in the hospital...I just...don't know what to say...It's a friggin mIrAcLe!!!!! I went and they do the ultrasound on both legs, even though the blood clot is only in one leg. I was telling her that I've had the blood clot for almost 4 years now, so not to freak out like last time. She said it was just standard procedure to put the patient in the hospital if a clot was found bc of how dangerous they are. So she does the ultrasound and tells me that there's NO CLOT!!! I'm still in shock...I don't believe it!!!! I've had it for so long and they told me that it would never go away. I believed them bc it's only gotten bigger since I've had it. Now...it's jsut dissappeared....I'm SO confused!! My leg still stays swollen...only that leg...and the veins still bulge out, and it's not like that on my other leg. I called my dialysis center as soon as I walked out the door and told her that when my doctor sees the results to let me know waht he says. I want another ultrasound just to make sure. If it's really gone, then it'll be more likely that a transplant will work!! I was so worried that I wouldn't be able to get a transplant bc of this clot, but now it's GONE!!! I'm trying to not get too excited just in case they were somehow wrong...But it gives me hope!!! I'm happy, but confused and cautious!! lol I just don't know what to think!!!