Ok it has come to that point where I can not postpone any longer.
I was informed I have to go on dialysis. I was so hoping to get kidney before …Which of course for 4 yrs now we knew my kidneys were in failure but only until yesterday did I convince my dr to even get me on a kidney list…so here is dilemma
They at first said I need to get surgery for my arm for the dialysis…i met with surgeon and it was go ahead but now after meeting with the dr who did all work to get me on list he said I can have PD…argh I didnt even know that was option but now he says I need to make decision by next week.
truthfully I am scared… I HATE surgery so first question is how did you recope?? Also, can you swim with the catherder (sp?) do you find you made right choice or you wish you did either in a center or the hemo at home?
I am sure I will have tons of questions but right now I am just sick to stomach trying to figure all this out.
yes for life style I would prefer to do at home I have 3 kids under 3 so would just be best instead of being gone for 4 or more hours but can I do it???
I just dont know …yes scared and would love to hear from anyone who can maybe ease my mind…
thanks in advance
Unregistered, welcome to Home Dialysis Central. You are already way ahead of the game by finding your way here and asking questions–so many never get this far. So, even though you’re scared, you are doing everything right. Good for you!
With 3 little ones, home dialysis makes a ton of sense. I’m sure folks who do PD will get back to you with some details. But, in the meantime, we’ve written some articles that you might find very helpful right now:
• Your Kidney Treatment? Your Choice! - http://www.homedialysis.org/resources/tom/200604/
• PD as a First Therapy - http://www.homedialysis.org/resources/tom/200602/
• PD Catheter Placement: What to Expect - http://www.homedialysis.org/resources/tom/200608/
• The “Bathtub” (Presternal) PD Catheter - http://www.homedialysis.org/resources/tom/200507/
No-one likes surgery, but unfortunately there is no way to get kidney failure treatment (PD, HD, or transplant) without it. PD catheter placement is not major surgery, and starting with PD buys you time to get a transplant or decide to switch to HD and get an access done.
Each year, more than 100,000 people in the U.S. start dialysis. You’re not alone, and if you just type “scared” into the search field for the message boards, you’ll find 59 different threads where others have already gotten some answers that might be helpful for you while you wait for folks to reply. (http://forums.homedialysis.org/search.php?searchid=35464).
ok I just wrote a whole long reply and it got lost …LOL
so here is reader digest version 
I am now registered so I am piglets1 instead of unregisterd
Thank you so much for the info I will definately take a look at it.
I know almost if not everyone feels the same way at beggining. but I guess I hit a 'why me" part of this journey I was hoping to get a breather before having another crisis in my life…I just got over cancer x2, and had 2 sets of twins who were stillborn. So now I need to reach deep inside and fight this arghh…I know I can do it and I just need to get past this pity party.
Anyway I really appreciate the info… I would love also to hear from anyone who is also on insulin pump and Pd…any problems with changing pump site ??
thanks again
Oh, my gosh, piglets 1, you have really been through a lot. I don’t think anyone would blame you for wanting a break from the crises! It certainly does seem that not everything should be a struggle. Have you considered getting counseling to help you deal with all of this? You might also want to check out the Coping module of our Kidney School site (http://www.kidneyschool.org, which other folks say has helped them. You can either download it and read it or, if you have half an hour, go through it “live” online.
You are truly a survivor to have been through so much, and though your marathon is not yet over, I hope you have proved to yourself that you can handle what life throws at you. (Note to self: Next time life starts throwing, duck!)
My husband is on Home Hemo and we do his treatments for 3 1/2 hours 5 days a week. At first it is very hard but we survived it and I do think it is better than PD. If I am correct PD is done every night for up to 8 hours while Home Hemo is 3-4 hours 4 to 5 days a week. We do use a cath as his fistula did not take ( i was not good with the needles either) and he is getting a transplant on Jan 10th.
This is a very scary time you are going through and please feel free to contact me anytime. My husband is 57 and thank god our kids are grown, doing this with small children would be tough.
God Bless and I will keep you in my prayers
Donna
armymomx3@aol.com
Dori
thanks …I will take a look…funny thing someone just said that same thing about ducking to me resently LOL guess I should listen
armymomx3.thanks for info.i am so new to this that I am just trying to learn all options right now. I didnt realize if you do home hemo you can do via cath.wouldnt that be PD? see I am just clueless…anyways thanks for info…
oh and best wishes to your husband .that is good day that is my anniversary
Hi Piglets1,
I’m glad that you found us. I hope the social worker at your clinic has introduced himself/herself to you and talked with you about your health history and coping to help you use your strengths to cope with this new medical setback.
Sompe people use a catheter for hemodialysis, but this catheter is different from the PD catheter that you use for PD. Rather than being in the abdominal area where a PD catheter is placed, a hemodialysis catheter is placed in the chest or neck. While PD catheters are meant to be used as long as someone does PD, most of the time, a hemodialysis catheter is used temporarily when it’s not possible to get a fistula or graft.
If you haven’t found the rest of the material on Home Dialysis Central, you might want to check out the home page where you can find links to all kinds of information about all types of home treatments.
You can read about vascular access for hemodialysis at:
http://www.kidneyschool.org
You are obviously very strong and you must have a generally positive attitude. I’m sure you can do this!
Hi piglet1, you certainly have been given a life full of challenges. I have been doing pd now for almost two years. I have experienced hemo but i prefer the night time cycler when i sleep.
the catheter heals in your belly and you never know it is there. i do wake up with my drains now and then cuz it hurts some times . but not all times. If you are still very independant give the cycler a try. if you dont want to bother with the details of your treatment then hemo is probably best. you just go in and sit. although you should be in charge of your treatments as much as possible. be as positive and proactive as you can and things should run smoothly. good luck.
I was scared too!! I had a CVC line and did hemo in a center for some months and my nephrologist urged me to do PD as I told him I wanted to return to work. I thought the CVC line might be infected and I got some vanco and went to the hospital for removal and replacement on the left. Culturing of the site and the line showed NO infection. So I had to go back to have it replaced on the right. I was terrified about getting a PD catheter. I am afraid of anaethesia. Being put to sleep is like being killed (to me). But it was a slow drift to unconsciousness and was quite pleasant. The catheter was in place AND I drove myself home in the early evening. The spot was sore and then tender for a couple of days and I was afraid to even look at it. But it isn’t sore any longer. Then I was afraid to start PD. Just the thought of having my stomach filled with fluid was abhorrent. But after 2 days of training, I was doing it at home. It was an isolating experience and now I am waiting for a cycler and looking forward to not having to do 4 treatments a day. I cried and cried through all of this, but you know what? You take one step at a time, listen to your doctor, read as much about it beforehand so that you feel more confident and PRAY. Having to do dialysis is something you have to do. There is no choice unless you want to die. I delayed my start of dialysis and ended up in the ER, then back home and ER again. I was in hospital for 3 days and don’t remember any of it. Those toxins build up and before you realize you are comatose. There is no need for that. Just go ahead with it and you will feel much better.
Noel
Hi Noel,
Thanks for sharing your experiences. I’m sorry that your fear kept you from starting on dialysis when you needed to requiring ER visits. Once you started dialysis (or before), did anyone suggest that you talk with the clinic social worker? Dialysis social workers often counsel with new patients who are having problems coping with having kidney failure and needing to do dialysis. I used to tell people who were facing the need to start dialysis that their fear was probably the highest it would be and that it would be less once they started dialysis and knew what they had to deal with. It’s so easy to imagine the worst before you really know what dialysis is like.
I encourage patients to talk honestly with their social worker about what they’re feeling. The social worker can’t help if patients pretend that everything’s OK when it isn’t. Social workers can help patients not only deal with the present, but look to the future to make plans and set goals. If you want to travel, you can with some extra planning. Being on a home treatment makes it easier to work part-time or full-time. Be sure you ask questions. The only way to learn is to ask. Staff enjoy teaching patients that want to learn. Check out our sister sites - http://www.kidneyschool.org or http://www.lifeoptions.org for information about kidney disease, treatment, and living long and living well with kidney disease.
Hi there
I hope some of what I say will be of benefit to you. First let me begin by saying that I’m not a PD patient; my partner is. I am, however, a registered nurse. My partner was fortunate in that his kidneys failed very gradually over a 15 yr period. Unfortunately this lulled us into a false sense of security. We expected him to require dialysis in a “few more years” as we were told by his nephrologist. Last summer his creatinine spiked and we needed to make some decisions. He decided to start treatment while he still had some function rather than waiting until he had no choice but to start. He had his surgery this past October. (I think it took longer to do the paper work than to have the surgery). Other than being sore for a few days he felt fine and was back to work in 4 days.
The only problem we had at this point was vague discharge instructions from the surgeon. I wasn’t sure what to do with the dressing so I called his PD nurse even though she had only met with him briefly once prior to the surgery. Let me tell you right here: your PD nurse is your best resource for information and support. He or she will be the person who trains you in every aspect of PD and understands the management of the catheter better than anyone I’ve talked to so far including the surgeon.
Once the catheter was ready we both began training with his PD nurse. For the first 2 weeks he did exchanges 4 times a day; one of which he did at work. (If you work, familiarize yourself with the Americans with Disabilities act for persons with kidney disease. I’d post the link but unfortunately I just reorganized my bookmarks and can’t find it! There are “reasonable accomodations” employers are required to make by law). By the third week his PD nurse felt he was ready for the cycler. Now all he does is hook up an hour or so before he goes to bed. He always puts an extension on so he can walk all around our upstairs. This gives him access to the TV, the computer, the bathroom ect. While he sleeps the cycler does his exchanges. The next morning he disconnects and breaks down the machine. After several weeks he’s really starting to feel better. He probably would have felt better sooner but he went from working part time to full time the same week he started dialysing. Any early decrease in fatigue was offset by increasing the numbers of hours he works. Other than the occasional alarm going off when he rolls on the tube at night and constantly rearranging boxes of solution (they deliver a lot!), things have gone very smoothly.
As far as swimming goes his PD nurse advised him that he shouldn’t do it in any natural body of water or a public pool. However, she advised that a backyard pool that is well chlorinated should be fine.
This brings me to another important point: you’re going to hear different recommendations from different people. I’ve heard of people told that they couldn’t shower for weeks after they had their catheter inserted. My partner’s surgeon allowed him to do so after 2 days. I’ve also heard of people who were told they could never swim again period. Talk to your doctor and PD nurse and follow their instructions. Your PD nurse starts to feel like part of the family!
When it came to chosing a form of treatment he has not regretted selecting PD. (Interestingly I was the first person to bring this up as an option. A lot of people have never even heard of it). He likes the freedom it gives him. While he’s not thrilled with having to be hooked a machine every day he realizes that the alternative is much worse. He’s asleep most of the time he’s connected anyway.
There’s one thing you’ve mentioned that I find a bit odd: having to talk your doctor into putting you on a transplant list. My partner’s nephrologist started talking about transplant over well over a year ago. Also he had to go through extensive testing at a transplant center before actually being put on the list. The first meeting with the transplant team was in March; they finally put him on the list in June. It’s not something they do overnight so I would suggest clarifying it with your doctor.
I hope this has been helpful. If you have any questions about anything I’ve said I’d be happy to clarify for you. I wish you the best of luck.
thank you all for your info Well I got the pd catheter in …(that was a horrible experience) I talked to my dr and asked that I at least get twilight sleep he said ok …Well they roll me in and nope nothing…I brought it up and he said 'i never said that ’ a down right lie…so needless to say I am not very happy. then the nurse was a major bi&**. I dont think she said two words to me. I am glad it is in but I am having such horrific shoulder pain and under my right ribs hurt so bad. I thought maybe it is just from surgery but I think I will have to call them tomorrow (funny my dogs vet calls day after any procedure and my dr doesnt )
As for person who asked about the kidney list .I have been in kidney failure for 4 plus years I have continually asked to be placed on a list and was told I dont reach criteria. Now that I need dialysis they say I can get (which now I have found out has been incorrect info all along and I am beyond upset about this ) so I have a meeting with the hosptial next month to get on list .
I am so sorry you had such a bad experience with the catheter. So different from my husbands. He was put to sleep and the nurses were so nice. His was a outpatient. We came on the evening after the surgery.
We are now on our third week of PD and things are going so good. During the first week I we had decided to try PD for a month and then tell the doctor we wanted to do hemo at the clinic. Now we would not even consider that unless it was a have to be solution.
[QUOTE=piglets1;15256]ok I just wrote a whole long reply and it got lost …LOL
so here is reader digest version
I am now registered so I am piglets1 instead of unregisterd
Thank you so much for the info I will definately take a look at it.
I know almost if not everyone feels the same way at beggining. but I guess I hit a 'why me" part of this journey I was hoping to get a breather before having another crisis in my life…I just got over cancer x2, and had 2 sets of twins who were stillborn. So now I need to reach deep inside and fight this arghh…I know I can do it and I just need to get past this pity party.
Anyway I really appreciate the info… I would love also to hear from anyone who is also on insulin pump and Pd…any problems with changing pump site ??
thanks again[/QUOTE]
i have been onPD since july 07- and loving it. 1st benefit: the recupperation for putting a pd cath is very minimal(i too have had many, many surgeries-especially in the belly); 2ndbenefit: the FREEDOM u have to travel is extremely wonderful!!! (i have 2 sons who is in the army in 2 different states and another one in Louisana- i do alot of travelling). all you have to worry about is taking your pole, the supplies, and lysol wipes w/you. 3rd benefit: yes you can swim, excercise (w/in reason) and the list goes on and on. Compared to hd you dnt have any down time and an exchange can take about 45 min compared to hd taking 4-5 hrs. the only risk about PD that i know of is infection- but as long as you clean the area where youre doing your exchange and wash your hands the risk is minimal