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Anyone else have "leaky veins" ?

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I was wondering if anyone else has fluid build up in their tissue from Leaky Veins?

Dr Grubb explianed that my Hypermobility breaks down my collagen as well as my veins failing to constrict properly will allow fluid to leak out.

Everytime I get IV fluids It goes straight to the tissues ..... Its almost like the IV does nothing at all anymore b.c the fluid is displaced.

Does anyone else have this problem?

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Hi Steph - Thank you for the good woshes :D

Yes we leave on Wednesday.... We are staying at the Radisson, I think that is where you stayed right? They seemed very accomodating with everything. Is it a long walk from there to Mayo?

As far as what I mean By "leaky Veins" The fluid I get just goes to my tissues so my legs get filled with fluid, arms, and around my entire body...

This hasne always happened...

There also times when like you I just pee it all out... That comes and goes in cycles...

Right now I am haveing a semi POTS cycle that I am trying not to have get into a full blown one b/c I leave next week.

One Question ABout Mayo : IS the testing very strenuous? I know that I am not supposed to eat or drink anything after 7 PM on the night I get there until I get blood the next day but honectly that is an impossibility for me especially if I am having a flare, and comming off of a flight...its just not something I am willing to do.

How did that work for you?

I am so glad that the last of your surgery is over. I hope you are recovering ok?

I;m sorry you went through so much this last time around afterwards.


Thanks again!! :)

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Steph - Thank you so much for your support and tips for Mayo!

I'm definetly a little freaked out right now :) .... I know that is not helping this flare....

I also know that when I go into one of these flares to get over it I have to be still, lie low, and get IV fluids on and off... It usually passes in a week or so... But I cannot put any stressors on my body or it gets really bad..... why coudlnt this happen at any other week!?!? aaaaaahhhh! LOL

I hope it will be ok next week... I guess I'll keep my fingers crossed

We are flying into Minneapolis around 4 pm I think then, driving to Rochester.....so it will be later by the time we get into the hotel.. Maybe thats a good thing.

Good idea about asking to postpone the blood work a bit... that might help me.

I cant thank you enough for all the help you have given me..it is really useful info, and I have a better Idea of how things wokr there.

Have a good night :D

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To add my 2 cents. Call ahead and ask if you are seeing the doc first then labs....to see if you can adjust the # of hours between. Also you can get transport if you are to weak or tired they will arrange it for you. It's not a bad drive from the airport, its nice country. If you cannot wait between for food just tell them. I know a couple of people had that problem so they fasted for the # of hours and took the shuttle to the hospital to have drawn. Miriam B)

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