Removed from PD and chest catheter being placed tomorrow for Hemo

[Wildrose]

Soo... I've been on a roller coaster this last week and honestly the last two months. On 3/2/12 my surgeon did the first catheter placement for PD and the first AV fistula attempt on my lower left arm. 3/14/12 my surgeon removed the first catheter as it was positioned wrong and causing spasms in my bladder and placed the second one a little higher. He also created the second fistula on the upper left arm, this one was successfull. 3/27 the fistula was externalized and the next day 3/28 I started PD training at my local kidney center. Three days of manual training then the next week I was trained on the cycler and have been doing cycler at night and one manual exchange every day for the last two months.
Over the last 2 months things have gone relatively well but with 'normal' issues such as dehydration, trying to eat enough potassium, iron issues, constipation and pain during exchange issues, etc.
Then... mid week last week I was having trouble breathing, I talked to a nurse over the weekend (just this last weekend) and he thought I had fluid over load and advised me to use more greens (2.5%) which I did but by Monday morning I was in a lot of pain.. just bending over slightly caused chest pain and coughing from lack of breathe. This time when I called the clinic the nurse I talked to told me to go to the ER, although she thought the issue might be caused by too low potassium.
At the ER they did an EKG that was normal, blood work and a chest xray. The chest xray showed that there was fluid under my right lung. They did a thoracentesis and pulled out 900 ml of fluid from under my right lung. Samples of the fluid was sent to the lab so they could test and see where the fluid was coming from... whether it was fluid overload or dialysite. It turned out to be dialysite meaning there was/is a leak in my diaphragm.
I've been in the hospital now since Monday and have had four chest xrays, two thoracentesis, a cat scan and surgery on my left arm fistula to bring it closer to the surface of my arm (I have deep veins). 
Unfortunatly I am being removed from PD and placed on hemodialysis. Tomorrow morning they will be placing the chest catheter since my fistula won't be ready for a few weeks. The Doctors are hoping that the hole in the diaphragm will heal itself over the next few weeks and that I can eventually go back on PD (I really want to stay on PD).

My Doctor told me that this leaking of the diaphragm happens in 1% of patients... so I am really curious if anyone else has had this issue and what the outcome of it was?


Rose

[MooseMom]

I know next to nothing about PD, but I know that a leaking diaphragm is not a good thing.  I am really sorry you are having to go the hemo route, and I hope it is temporary.

I'm sorry I don't know the answer to this question off the top of my head, but why were you being readied for both PD AND hemo?  You had a PD cath placed AND an A/V fistula created?  Is that right?

[Wildrose]

I know next to nothing about PD, but I know that a leaking diaphragm is not a good thing.  I am really sorry you are having to go the hemo route, and I hope it is temporary.

I'm sorry I don't know the answer to this question off the top of my head, but why were you being readied for both PD AND hemo?  You had a PD cath placed AND an A/V fistula created?  Is that right?

Yes, thats right that they did both. From what I understand my Nephrologist wanted a back up since PD doesn't always work out for everyone. And since a fistula takes time to heal they would rather have the fistula ready just in case. In my case its unfortunatly still not ready... but should be in two weeks. I really would have liked to avoid the chest catheter (and avoid hemo all together honestly) due to the higher risk of infection but all I can do is 'go with the flow'. Lol

[brenda seal]

Oh No ! You poor thing . Laurie has been through similar but the fluid was just fluid overload - they drained it all off and increased lasix and that problem was resolved . I thought we had all the complications - didn't know about this one ! I hope the heamo is just temporary and you can go back to PD soon . Hope you feel better soon . I can't help but wonder how you cope with all this and small children as well . I hope you have lots of help .
Brenda

[amanda100wilson]

My personal view on doing back-up fistulas is that they shouldn't do it.  I refused to have one done like this because there is always the chance that a transplant will come along and then the fistula may neverbe used, will clot off and the access is wasted. The first time around on PD I was doing it for 18 months before getting a transplant, so it would have been a waste.

[Wildrose]

Thats a interesting view Amanda and one  I never thought of... I've tried to do a lot of research but thats the first time I've come across someone saying there is a bad outcome with a fistula that isn't used. I guess I was under the impression that the fistula would just stay as it is until needed even if that was years down the road?

Brenda - I'm glad Lauries problem was fixable. A few of my Drs have been telling me they are sorry there have been so many complications and that its not normal. The surgeon that did my PD catheter and fistulas said that its not normal to have to do a second catheter, although doing a second fistula is somewhat normal. I guess I am just trying to take it in stride, I know my body is 'sensitive' (thats the only way I know how to describe it) and I can't change it when things go wrong but I can just 'go with it' and hope for a better outcome next time. There is always hope.
I hope that the hemo experience goes well and that I can get back on PD in a few weeks, that is what my Nephrologist is hoping for.

 

[bleija]

i really hopoe so too, my "4-6 weeks" ended up being almost 6 mon ths of hell. i hated hemo, it made me so weak and so miserable bc i couldnt do anything. i really hope its a better experience for u

[Whamo]

The change to Hemo should be difficult, but hang in there, it becomes bearable with effort.

[MomoMcSleepy]

Oh, no, poor baby!   . That's rough.  I'm sorry you were suffering and have had these complications.   I have not had that experience, I am pre-d, and will do hemo.  I am so sorry you'll have a chest Cath and hope that all goes well from here on out.  Sometimes it's no good to be a one-percenter     

[billybags]

Wildrose, I really feel for you, its one step forward and two back.  I am glad you are taking it in your stride. I hope you are not long on hemo and that you will be able to go back to PD. These things try our patience don't they?

[MaryJoe]

Wildrose,  I'm sorry you're having such a difficult time.  i hope things will be easier form now on.  You seem to have a really positive attitude about all this, and I think that is amazing!

Hoping for more 'easy' in your life,

MJ  

[Wildrose]

Thanks everyone for your support! It does make me feel better. I had my first hemo treatment on Saturday evening and it was nerve wracking, I'm going to post on that in the hemo section I think as I could use some advice regarding hemo. Just not sure what to expect I guess but I am trying to take it one day at a time and I hope hemo is tolerable regardless of length of time I end up on it. But it must be tolerable as so many people survive it? (I suppose thats debatable? Lol)

[YellowRose]

wildrose,
My doctor told me only 5% of patients has the leak. I happen to be one as well. I try to search the net and could not find any info at all.
In my case, we did 6 weeks of hemo, hope the leak will heal by itself but it does not. doctor has no idea why it may heal for someone not the other.
so I am current on in-center hemo.
Hope you have better luck.
Rose ( yes... my name is rose as well, is this leaking stuff has something against Rose?!)

[Wildrose]

wildrose,
My doctor told me only 5% of patients has the leak. I happen to be one as well. I try to search the net and could not find any info at all.
In my case, we did 6 weeks of hemo, hope the leak will heal by itself but it does not. doctor has no idea why it may heal for someone not the other.
so I am current on in-center hemo.
Hope you have better luck.
Rose ( yes... my name is rose as well, is this leaking stuff has something against Rose?!)

Maybe the percentage is increasing with the increase of PD patients? still 1-5% sure isn't a lot and makes it suck that much more. lol But anyways I am sorry it happened to you also. How is hemo going for you? I wish you the best!

[YellowRose]

Wildrose,
My hemo is doing fine. I have that sweating, empty head feeling as well, however, I normally take a nap (1-2 hours) then I will be fine again.
First couple weeks are very difficult .... hang in there.
Hopefully you will back to PD soon.