Is this what i have to look forward too?

[dyann]

I just need to say a few things than be done with it.  It is only March and I have already been hospitalized 3 times for infections and heart issues d/t the ESRF  I am 46 and so tired.  I just got out of the hospital last Tuesday and today they want me to go back to the ER as I am having trouble catching my breath walking just a short way  it sucks,  I refused to go, because i know what will happen they will admit me again and I cannot stand going back into the hospital, I have am on my 3 rd fistula the first two never worked, so hopefully this one will mature enough to work, I have had 4 infections in the perma-cath and had 3 pulled with new ones put in.   My last stay in the hospital was d/t infection and I became septic spent 8 days in there.  all this since September of 2009  is this what I have to look forward to the rest of my life 

[monrein]

I certainly hope that it's not going to continue to be so dreadful dyann.  I hate those permacaths for exactly the reasons you mention but of course they're totally necessary until a working fistula can be up and running. 

Please reconsider the hospital situation though, as dreadful as it is, and I do know first hand how much it's not a place we ever want to be.  If your breathing is laboured that can be serious and you don't need more complications.   

[MooseMom]

While I would vote "in the hospital" as my least favourite choice of places to be, if I were as ill and tired as you are, I think I might well want a team of people looking after me.  What are they saying about your newest fistula?  Are they fairly hopeful that this one will work, because if it does, then you might be able to break this vicious circle of infection.

I would venture to say that no, this is not what the rest of your life will be like.  You've hit a very large bump in the road, and hopefully this bump will not turn out to be a veritable hill.  Please do think again about admitting yourself into the hospital and letting others carry the load for you awhile.  They can spend all of their time healing you while you are in their care.

[Epofriend]

Dyann,

Have the doctors looked into why you are having so much trouble with the permacath? 7 months and 4 infections is a lot. Are they reusing the same tunnel?

No, it won't always be so bad. Once you have an established access method, things get better. I hope they figure out why you are having such a rough time with the permacath.

Regarding the hospital, go to the hospital. I know, I hate it too, but short of breath and fighting infections... please be careful.

Epofriend

[sullidog]

Call me nuts, but when I was having the breathing issues when I was first diagnosed I was greatful that they admited me to the hospital, I think it was because I knew I was under care and they were gonna figure out the issue. Are you keeping your permcath clean and dry? Not getting it wet? Good dressings covering it?
Troy

[Rerun]

I just want to remind you to keep very clean and wash your hands a LOT and especially if you are going to touch your permacath.  Change clothes everyday and use a fresh bath towel everyday.

All these things help cut down on infection and germs.  Sorry if I'm being blunt.  I'm sure you already do these things.

Best wishes.  Things will get better.       

[dyann]

Thank you everyone,  I guess i was in fluid overload so I have had a lot taken off since yesterday I have a Little more to go, I know the hospital is the logical choice, it is just so frustrating.  they think my first infection got better with vanc, but never totally cleared up showing that is was, but really was not  so it was dormant in my body so each infection after that was in some way related to the first one, so this one took a major toll on me, I am now on vanc and pcn I.V thru April 9th they want to ensure they get it this time.    As far as my fistulas  no one really said y they are not working  he told me that there is a 30% chance that they don't take that was after my first one failed, he was frustrated when the second one failed  so far this one appears to be doing well  keep our fingers crossed.  anyway thank you all for your support  I just needed to vent as I was becoming very frustrated and sad over this situation.

[MooseMom]

Dyann, it took 18 months and three tries for my mom to get a good working fistula.  The successful one is a work of art!  I hope you will be as lucky.

I know how frustrating this must be for you!  Reading your original post, it did occur to me that perhaps you didn't have several separate infective episodes, rather, the original infection was never completely eradicated.  So, I am glad that this time, they're pulling out all the stops!  After the 9th, come back and tell us how the treatment worked.

[RightSide]

Dyann,
believe me, I know how you must be feeling--because I was in a similar predicament my first year:

4 fistula operations (the first three failed), a prostate operation, 15 months of living on the hemo catheter.

But the 4th fistula operation seems to have worked.  I've been using it now for three months, without problems.

I guess what I'm saying is that if you persevere, you may yet win through, as I did. 

We're all here to give you support in the meantime. 

But I'll be honest:  With any chronic illness, there are good days and bad days.  I've had a couple of bad days even in the last few months.  You just gotta take them in stride, that's all.

What other choice do we have?

[MooseMom]

  You just gotta take them in stride, that's all.

What other choice do we have?

Complain like there's no tomorrow.  That's what I do.  I can be such fun to live with...