pd

[charee]

Well  I was gathering all the info on what would be the best way to go with dialysis as in home hemo or pd but i just got a call from  my Dr and  the results from my lastest scan show that there will be no room to do the pd .Both my kidneys are 23cm long and my liver is also full of cysts and enlarged, making it a bit tight for any extra fluid . I am abit disappointed as we like to travel alot with our 4 wheel drive and camper trailer, so it looks like we will have to change to fit around it.My appointments tomorrow for a mapping ultrasound of my arm  and we will go from there.

Charee

[anja]

Charee, so sorry for your disappointing news, but everything will work out~ Just learn all you can here from those who have been where you are now and keep focused on what you will still be able to do.  Thinking of you, Anja

[Bajanne]

I agree with Anja.  Just take it one day at a time.  We are all here for you.

[goofynina]

When things dont go my way, i mostly always consider it as a "miracle in disguise"  who knows, maybe its for the better.   Good Luck to you and please keep us posted. 

[Panda_9]

Couldnt of said it better goofinya 

[Rerun]

Well  I was gathering all the info on what would be the best way to go with dialysis as in home hemo or pd but i just got a call from  my Dr and  the results from my lastest scan show that there will be no room to do the pd .Both my kidneys are 23cm long and my liver is also full of cysts and enlarged, making it a bit tight for any extra fluid . I am abit disappointed as we like to travel alot with our 4 wheel drive and camper trailer, so it looks like we will have to change to fit around it.My appointments tomorrow for a mapping ultrasound of my arm  and we will go from there.

Charee

I'm so sorry.  It is okay if it is "your" choice, but when the choice is made for you because of health reasons, that sucks.  I cried the whole time I was getting my arm mapped.  I don't know... I guess I saw it as the first step towards the END!  But, I'm still here.   

[Joe Paul]

Well, we are in the same boat, my belly has had too much surgery for the pd. Don't worry, it'll work out for the best, thats what keeps me going, having faith things, no matter how sour they seem, will work for the good. Good luck, Hope the fistula turns out great. Joe

[Ginger]

Charee,
They won't even let you try? I also have very large kidneys and an enlarged cystic liver. I have PKD with kidneys that are too large for a transplant until they are removed, but I am still doing very well on PD. I now have to make a decision to have a single or double nephrectomy before I can even be active again on the transplant list. I just hate making these life changing decisions. Nephrectomy also means that I have to change to hemo, at least for a time, and I like how I feel on PD.

[Panda_9]

Everyone is different, even if you do have similar problems. It is terrible that you cant make your own decision, but Im sure they have made this one for a good reason. If you cant get much fluid in there, then you wont get adequate dialysis. It would be terrible if you went on PD then after a while discovered it wasnt going to work. I went through that and I totally regretted choosing to do PD. It was the worst 12 months of my life. I hope hemo works out for you.

[goofynina]

Awww, Amber, i am sorry you feel that way,  dont regret it,  remember, "the only things we regret in life are the risks that we dont take"  I am sorry you had such a hard time, but at least you tried it,  I had a very hard time in the beginning, but thank God my PD nurse was patient and worked with me,  it took about a month for it to work properly for me,  Well, i ended up on the cycler and that seems to be going well, so far, thank goodness,  But at least you can say you tried. 

[Panda_9]

Thats the thing goofinya, I should have went on it at all. When I was on PD as a child, after about 6 months there were signs of inadequacy, so I was being considered for hemo. Before they could do anything I got a transplant. Then this time round I just chose PD because I didnt want to do hemo. I forgot all about the inadequacy, and didnt think any of it, until after I changed over to hemo, I remembered. If there ever is a next time, I wont forget! I do beleive though, that if PD works for you, then by all means go that way. It is more gentle on your body, your diet and fluid restrictions are more free, and you can travel a lot more freely. If I could, I would still be on it.

[angieskidney]

Charee,
They won't even let you try? I also have very large kidneys and an enlarged cystic liver. I have PKD with kidneys that are too large for a transplant until they are removed, but I am still doing very well on PD. I now have to make a decision to have a single or double nephrectomy before I can even be active again on the transplant list. I just hate making these life changing decisions. Nephrectomy also means that I have to change to hemo, at least for a time, and I like how I feel on PD.

really? A double nephrectomy means you have to do on hemo? Why is that?

I never had to have the arm mapped. I thought it would be a good idea but they said it was unneccessary. I do think they overestimated how well my arm would do considering my first one failed and my 2nd one just blew this week.

If they said PD is not a good idea .. it is best to understand why. It does make sense .. it takes a lot of room since they must put at least 2 liters of fluid in there.

[Panda_9]

I was on 3 litre bags, and even with a normal abdominal cavity, I felt 9 months pregnant, and looked it!

[kevno]

pd or Haemo, been on both. Liked Capd the best lasted 13 years on it, 5 tubes with only two infections (both times I was in Hospital), but as I found out it can get very dangerous if you are on pd long term. One year after I had to come off Capd because I was not draining out properly. I got Encapsulating Peritoneal Sclerosis (EPS). Which is rare, but is a side effect of long term Pd. ESP is severe thickening of the peritoneum. It put me in hospital for five months. Then two years later it happened again. So that is always at the back of my mind. Is it going to happen again.

Haemo, no choice but to go on. Hate it, it keeps me alive. I am not as well as when I was on CAPD. You have to be more careful of what you drink and eat on haemo. Been back on haemo for 6 years now. Plus nearly four years in the 1970s.

I wish we all knew how long it would be before we got an transplant. The choice would be easier. Just a pipe dream

You will be find on haemo, just be careful what you drink and eat.

Kevno

[Ginger]

Angie,
I will have to go on hemo for at least the time of healing from the surgery to have my kidneys removed. I do not know how I will handle the needles as I hate them. PD has been so good for me. I hope that I will be able to return to PD after the healing time and have it still work, otherwise I will have to stay on hemo and have a fistula and learn to stick myself. Epo's journal about the Nxstage has been very helpful for me. Once my kidneys are out, hopefully the wait for a transplant will not be too long.

[charee]

Ginger No they won't let me try sometimes i think they do what is they think is easier for them.She did say she would fax my scan to the vascular surgeon for his opinion . Had the arm mapping done yesterday off to the dr on Wednesday to see when i can get it done. We have private medial (our system is very different from the US think) but if i go to a private hospital and use that it will cost me $1500.00 out of pocket expenses, but if i go to a public hospital it will be free but i might have to wait so we will see how long and decide from there. I will have to travel 800 km to learn the home hemo and livetherefor 3 months so we will have to watch every penny as my husband will have to come to as he needs to trained also so he will be out of work for 3 months .He has just started a new job so he has no holidays yet .So there is lots to think about and i know there are people worse off than us
 

[Panda_9]

Is it possible for you to learn by yourself charee? That way your husband wont have to give up work. I did all the training myself, hook up myself, everything. That way my partner is free to work, so we dont have to scrape the barrel to pay any extra expenses. He knows that if I need an ambulance for whatever reason all he has to do is clamp the lines and undo them or cut them off, and call an ambulance.

[angieskidney]

I was on 3 litre bags, and even with a normal abdominal cavity, I felt 9 months pregnant, and looked it!

WOW 3 L!?!?! WOW! I felt pregnant just on 2 Liters!!!

Is it possible for you to learn by yourself charee? That way your husband wont have to give up work. I did all the training myself, hook up myself, everything. That way my partner is free to work, so we dont have to scrape the barrel to pay any extra expenses. He knows that if I need an ambulance for whatever reason all he has to do is clamp the lines and undo them or cut them off, and call an ambulance.

  PD you can do yourself but HD you can't I think that is how it is. Am I right? That is what I have heard anyway. I did PD myself at home every night but there is no Hemo Hemo in my area yet.

But ya ... PD can be taught to one person easy! At least that is how I learned as I live by myself without any help from anyone! Not even a nurse comes in anymore (only had her to help with with the Eprex injections while on PD cuz I was afraid to stick myself  ).

[charee]

)

Is it possible for you to learn by yourself charee? That way your husband wont have to give up work. I did all the training myself, hook up myself, everything. That way my partner is free to work, so we dont have to scrape the barrel to pay any extra expenses. He knows that if I need an ambulance for whatever reason all he has to do is clamp the lines and undo them or cut them off, and call an ambulance.

No They have told me that another person must train with me and they say that when I'm at home i have to have another person there at all times but i will be asking about it now that i know more info .Thanks

[Panda_9]

I do hemo alone, every single bit of it. Its not suitable for everyone though, however it is possible. I do have my fiance at home, I would never do it if I lived alone.
I dont understand why you would need someone with you for PD, its extremely easy and there is really no reason for anyone to help you. I think you probly would be more likely to contaminate the lines with someone helping. I will tell you though, home hemo is not easy. Physically it is, but mentally it is a lot to deal with. PD is very different in that respect. If you need any help we are here!

Angie, I went up to 3L when my clearances werent improving, but I dont think it made a difference. It was very uncomfortable as I have a hiatus hernia, and I also developed an umbilical hernia. I easily could of passed as 9 months pregnant, or more lol Ive lost a heap of weight now though and the umbilical hernia is gone and the hiatus rarely gives me trouble, unless I forget my omeprazole and Ive eaten tomato or vegemite. If I dont forget the omep. I have no trouble with food.

[charee]

I dont understand why you would need someone with you for PD, its extremely easy and there is really no reason for anyone to help you. I think you probly would be more likely to contaminate the lines with someone helping. I will tell you though, home hemo is not easy. Physically it is, but mentally it is a lot to deal with. PD is very different in that respect. If you need any help we are here!

I meant that they won't let me train alone for hemo ,

Cheers

Charee




EDITED:  Fixed Quote - Goofynina

[Panda_9]

Oh ok fair enough. Everywhere is different. Theres a few here that do it alone. I think if you are capable of doing it alone then I cant see why not. In the past year I have only ever had to ask for my other half to assist me probably twice for nothing major. I plan my hours around his work hours so I am on the machine when he is home. Sometimes I might be taking myself off after he has left for work, or hooking up before he comes home.

[charee]

Where did you learn ? Did you have to have a 2nd person ?

Charee

[Panda_9]

I didnt have to have a second person. The reason why I didnt was because my fiance couldnt get long enough time off work for the training. Most people have a 2nd person, which is recommended, but its possible to do it yourself. I have the advantage of being a trained nurse, which helped with all the little things that others would take some time to learn. It is alot to take on, so its not for everyone. I would love to have someone helping me but its just not an option at the moment.