I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: calypso on October 19, 2009, 05:13:49 PM
-
I know I haven't been very active lately but thats cause things were going well and I just spent all my time enjoying life...till now.
I been on PD for 6 years and I had no (or very few) problems on it. But Sept 15th 2009 I was hit with peritonitis (man is that ever painful!).
So they decided to take my PD cath out in case it was "seeded". Now I'm doing hemo in center thru a tessio catheter in my chest.
Nephrologist says I can either go back on PD (put in a new catheter) or stay on hemo (get an AV fistula)
I don't know what to decide. PD carries the risk of:
1) not working from damage to the peritoneum due to the peritonitis I just recovered from and the only way to know if PD will work again is to try it.
2) getting peritonitis again at some point, although I did make it 6 years without incident, so I could do that much again....maybe.
I don't like hemo because:
1) more diet restrictions (can't have potassium, on PD you can have all the potassium you want)
2) heavy gauge needle sticks 3 times a week does not sound pleasant, but I've never tried it cause I have a tessio cath. right now for hemo.
3) 4 hours in a chair 3 days /week
I ask the docs what would you do? They all avoid it by saying, it's your personal choice.
Anyone have any opinions? What should I do? They gave me a month to decide, as it will take about that long to fully recover, 1 week has gone by already.
-
ok what is a tessio cathater? Is it the same thing as a perm cath? I have actually never heard of the term tessio.
Well how did you get the peritonitis? Were you hospitalized with the peritonitis? If this was your only infection I would atleast try for another cathater. That is me.
The other thing is are you able to get a transplant? If you are eligble to get listed for a transplant, you have to think, do you want something permanant, such as a fistula or something that can be gotten rid of once you get transplanted.
I encourage you to really look at your options. If you like PD find out for sure if you cannot do PD anymore.
I would say make sure you have exhausted your possibilities of what you want to do before deciding. Another thng is on PD were you doing manuals or the cycler? That can make a difference in getting the infection. If you can go on the cycler, that can really decrease your risks for infection because you are only connecting once and disconnecting once.
Is home hemo an option for you?I do like that the best. Or it seems like the best option. At this moment i am on PD, noone to train with so i can do home hemo.
Lisa
Good luck.
-
Calypso, I hope you get some really good answers here. I will be making the same decision myself soon. I am leaning towards Hemo Nocturnal In Center. Only because, I dont realy have the room to store all the supplies, for PD, and while I will be right there learning everything, I do not want to take control of the dialysis myself. Chicken I suppose.
-
You can always go to hemo. Try PD again.
-
Hello Calypso. From my limited viewpoint, all I have leared from patients, PD allows the most flexibility in lifestyle and diet. My husband is on PD and has been on hemo in the past. He will opt for PD until the doc tells him he can't do it anymore.
Both require surgery to place an access.
Both have risk of infection.
Wishing you good luck in whatever you choose. :twocents;
-
Hey, Calypso, like you I had my first ever peritonitis after 5 years on PD. I had developed an abdominal hernia which ruptured into my PD fluid and gave me pseudomonas (apparently really nasty stuff). They removed my catheter and I was on hemo for 6 months with a permacath. Also like you, I hated every minute of it. As soon as I could, I went back to PD. One funny thing, though, everyone else who has had peritonitis says the pain is excruciating, but for me it just felt like gas, so I kept asking them to give me simethicone! Like they say, every body is different.
-
I would go back to PD. I have done both and I am currently on PD and hope to stay on PD until I can get a transplant.
I have seen what an AV fistula can do to an arm....yuck! I wouldn't want my arm all tore up like that. Plus...can you shower with a fistula??
I would avoid hemo like the plage.
-
ok what is a tessio cathater? Is it the same thing as a perm cath? I have actually never heard of the term tessio.
Well how did you get the peritonitis? Were you hospitalized with the peritonitis? If this was your only infection I would atleast try for another cathater. That is me.
The other thing is are you able to get a transplant? If you are eligble to get listed for a transplant, you have to think, do you want something permanant, such as a fistula or something that can be gotten rid of once you get transplanted.
I encourage you to really look at your options. If you like PD find out for sure if you cannot do PD anymore.
I would say make sure you have exhausted your possibilities of what you want to do before deciding. Another thng is on PD were you doing manuals or the cycler? That can make a difference in getting the infection. If you can go on the cycler, that can really decrease your risks for infection because you are only connecting once and disconnecting once.
Is home hemo an option for you?I do like that the best. Or it seems like the best option. At this moment i am on PD, noone to train with so i can do home hemo.
Lisa
Good luck.
Sorry I misspelled it, it's Tesio, with 1 s not 2.
This is what a Tesio catheter is: http://www.medcompnet.com/?products/literature/PN2031_Tesio_Patient_Guide.html
I don't know what caused the peritonitis, I suppose it happened during a connect/disconnect procedure because they said the type of bacteria found was from the hands or breath.
I forgot the name of the bacteria. Yes it's my only infection in 6 years of PD. Anyway yes I was hospitalized for a month because of it, and yes I will be going for a transplant. I was leaning toward PD and now after reading these replies even more so. Thanks so much for all your well wishes and replies that helped me decide! I love you folks! You all hang in there and good luck to you all as well.
-
I would get a fistula, and stay with what's working, unless I could do slow hemo either at home or in center. An AV fistula is not the end of the world. A series of infections that leaves you under dialyzed could be. IF you are small and PD is working for you, keep going. However, you need a better access than a catheter if you want good dialysis while you have peritonitis.
-
Wally you do have a point that fistulas are less prone to infection than any catheter. I wouldn't say I'm underdialyzed, the access I have now, although temporary, is working well. Have you ever been on PD? It worked well for me for 6 years. I felt much better on it than I do on hemo, but then I am recovering from peritonitis which is why I'm not well yet.
-
I am way to active and spend to much time in the ocean to live with a catheter so I have a av fistula. In my opinion if you have a av fistula you should make buttonholes and they work great for me. I have not really found very much that I can't do with my fistula if I look at it right and take my time.
good luck and I hope what ever you choose works great for you
-
Wally you do have a point that fistulas are less prone to infection than any catheter. I wouldn't say I'm underdialyzed, the access I have now, although temporary, is working well. Have you ever been on PD? It worked well for me for 6 years. I felt much better on it than I do on hemo, but then I am recovering from peritonitis which is why I'm not well yet.
I have not, but I mass over 125 kg. The larger you are the less effective PD will be. I Dialyze daily at home with he NXstage. I have not had to be overnight in the hospital since I have gone home (15 months) . The issue for me on PD would be that every-time I got peritonitis, which happens with some regularity, I would have to have another surgery for a catheter. I would not want that, especially if i was fighting off a serious infection.
-
calypso, My husband has been down this road we can actually see the light at the end of the tunnel. (July 8th I remember it well) We went abroad to Kos in Greece, first time abroad doing PD. Cut a long story short, he took ill next day, very bad e-coli bug, peritonitus, hospitalised in Rhodes, sent home week later to go straight to our own hospital. I thought he was dying. They removed his tube, he had emergency lines put in for hemo.He was in and out of hospital for 3 weeks. His appointment came to replace his tube and was cancelled twice. We are now three months down the line, he had his new tube in last Friday, they like to give your peritoneal at least 8 weeks to recover. For all the pain he went through he is willing to give it another shot, yes the pain is excrutiating and yes he knows it could happen again . He has been on hemo for 3months and has hated every minute of it, 4 hours drags into 7 be time you get picked up, also he is not doing well on hemo. At the end of the day it is your choice. Good luck and keep your fingers crossed for us he will have his tube tested next week.
-
Billybags, sounds just like what I am going through except the trip to Greece part. Also mine wasn't e-coli but a different bug which I can't remember the name of right now. Anyway, good luck on the PD cath test! I hate hemo too and can't wait to recover so I can go back on PD myself. :beer1;
-
calypso, good of you, give it another shot. As my husband says "if you don't try it again you might regret it". Make sure you leave it for a good few weeks to make sure the virus has gone.
-
I started with PD and had to go on hemo for 10 weeks due to having a nephrectomy and PD cath removal. I went back on PD a couple weeks ago and can't understand why anyone would choose PD over hemo given the choice. I've never had peritonitis but have had several abdominal surgeries and my clearances are ok. Go back to PD!
-
"I went back on PD a couple weeks ago and can't understand why anyone would choose PD over hemo given the choice."
Did you mean hemo over PD?
-
I started with PD and had to go on hemo for 10 weeks due to having a nephrectomy and PD cath removal. I went back on PD a couple weeks ago and can't understand why anyone would choose PD over hemo given the choice. I've never had peritonitis but have had several abdominal surgeries and my clearances are ok. Go back to PD!
My feelings may change in the future if I have to go on dialysis, but I contemplated PD for months and I really though about how it would affect my daily life and I choose hemo when the time comes. My decision is based on the fact that I would not like to wear the PD belt or have the tube in my abdomen. I enjoy summertime, going without a shirt and swimming. I also have a problem with turning my bedroom or guest room into a medical storage/lab. For some reason I just don't want it in my home and right now have no interest in home dialysis of any kind. I think I would rather go to the center for 3 days a week and then have 4 days that I can forget about being a dialysis patient. I am not on dialysis so what I say is really just writing about my own inner struggle.
The more I think about it, I think I would rather go for a transplant before I have to do either.
These are just my thoughts and I am still very confused and freaked by the whole situation. I may hate hemo and opt to go to PD. I really don't know but I have made a choice to get the fistula and have done that. I figure that is good insurance either way.
It really is a personal choice.
-
I have done hemodialysis through a permacath and now I am currently doing CAPD, I definately prefer CAPD. Just recently I switched to the cycler (CCPD), I am not sure I like this though. I have only been doing the cycler for a few weeks and now I am thinking I may have perotinitis, but Im not for sure yet I have to go see my Dr. I do agree with the Doctors though, it is your own personal choice. Do whatever is best for you and your lifestyle. I am only 25 years old so I believe CAPD is definately better for me, it gives alot more freedom. Also I know youre worried about getting infection again but every form of dialysis has risk of infection. When I had my permacath I got infection through it and since it went into my heart the infection did also, it caused a blood clot on the end of the permacath tubeing. The blood clot was also attached to the wall in my left atrium of my heart and they could not just pull the permacath out due to risk of the blood clot comeing detached and going into my lungs. So my only option was to have open heart surgery to remove the blood clot and the permacath. It was one of the most painful aweful experiences Ive been through, but everything turned out ok. Thats when I decided to go to PD because my Dr. was really adamant about me getting a graft or fistula and I absolutely cannont stand needles, especially those huge needles so I opted for what I thought was the better solution. So I say do whatever makes you happy, however I do not reccomend keeping the permacath.
-
I think it would really depend on the lifestyle you want and if you have any residual function.....
i'm on pd but my peritoneal lining is failing so i have no choice but to switch. Thing i'm bummed about is i have residual function and i still pee and i know that is going to stop ery quickly. Nurse has given me 6 months from the time i start heamo.
honestly if you do have function i'd stick with pd as long as possible to maintain it also that way if you work it out you wont have to get a fistula till later.
-
Wow Jennyc, your dates almost coincide with mine, I too started PD in 2003 and stopped in 2009, although I started in June of 2003 and stopped PD Sept 2009. I stopped because of peritonitis though and not because my membrane was failing. I haven't had any residual function for years but I just want to go back on PD because I felt so much better than I do on hemo!
-
If at all possible, do the PD. It is your choice, but my humble nursing opinion, if you are a good candidate, and clearly you are, PD is better.
-
If at all possible, do the PD. It is your choice, but my humble nursing opinion, if you are a good candidate, and clearly you are, PD is better.
I agree, it is SO much better and in so many ways.
#1 no cramping because you can't find your dry weight,
#2 no needle sticks every other day
#3 no fistula inflitrations
#4 no fistulagrams
#5 no clogging up the machine and not getting your blood back causing you to get anemic (happened to me twice already and I only been on hemo like 2 weeks! wth!? and yes I'm getting heparine but i suppose not enough? IDK
#5 no sitting in a chair for 4 hours at a time
#6 constant dialysis so less ups and downs in how you feel and BP
#7 no techs to screw things up, you're your own caregiver (tho some can do this on hemo as well)
there's probably more I can't think of right now, feel free to add to this list anyone!
The only draw back with PD: risk of infection greater than that of fistula.
-
You can still cramp when on PD.
-
You can still cramp when on PD.
True, technically you can cramp even without renal failure. My point was it doesn't happen very often on PD. I went 6 years on PD without ever cramping.
-
For me, the decision was simple.
I don't want ANY catheters stuck into my body. To me, an indwelling catheter (of any type) plus time equals infection.
I had a urinary tract catheter for a while once, and I developed a nasty Pseudomonas infection that was resistant to all the usual oral antibiotics.
I'm allergic to the penicillins, the cephalosporins and possibly the clindamycins too. Hence if I get a life-threatening infection, there aren't a lot of antibiotics left they could give me. (For the aforementioned Pseudomonas infection, they finally gave me IV imipenem.)
There are just too many horror stories on IHD about peritonitis, which can be life-threatening.
So I decided to go with hemo; and I'm doing whatever I can (four surgeries so far) to get a working fistula, after which I can kiss this hemo catheter goodbye.
I told my Social Worker that win, lose or draw, the fistula is where I will make my last stand in life, after they remove the hemo catheter. Even if the fistula should fail (and roughly half of them do within the first six months of use), I will never let them put another catheter into me.
-
Hi Calypso,
If you feel better on PD give it a go again. There are so many positive points to PD. I am going to miss them on hemo but at least i'll be doing it at home so i'll be able to maintain most of the independance i've gained with pd (in my state in Oz you have to be completely independant to do hhd, your partner is only allowed in the last week to adapt to the machine. I have to be the one to set up and cannulate). I will miss just being able to pack up for a week and travel. The only thing I can't do with PD is swim or take a bath (I can just takes a bit of extra prep, even then....don't want to risk it)
If you've had 6/7 good years on PD with few peritonitis bouts then it is obviously a good option for your body.
I start HHD hopefully in December. Once i'm over training i'll let you know how i go with the transition. I chose HHD so that i could still be in charge of my treatments and dialyse more often than 3x weekly.
But with infection on PD, i think it really depends on your body. If your prone to infection I don't think PD is a good option. I have a pretty strong immune system, even now. I'm the last one in the house to get sick and even then i don't usually seem to get it as bad as the ox's in my house, though it does wear me down quicker. Never had peritonitis (knock wood.....).
-
ok what is a tessio cathater? Is it the same thing as a perm cath?
It's a permacath. Just different terms for different countries.
-
ok what is a tessio cathater? Is it the same thing as a perm cath?
It's a permacath. Just different terms for different countries.
Don't know why it's called a permacath, there's nothing permanent about it!
-
I had no choice as to what kind of dialysis I was going to have. Right from the start the doc talked about getting a fistula and doing hemo. I do in center treatment. I have thought about in home and I know myself and that I would get depressed and slack. I am very good, even with depression, being able to get someplace I need to be on time. PD was never mentioned to me. maybe because I am not a small person. Sometimes I fel like I have been thrown into a forgein country without a translation book.
Calypso...do what is best for you.