Monday my husband and I will start PD Training. We are both rather scared but feel that thinking about it is worse than the actual doing of the dialysis. I guess it is the unknown.
I have so many questions and have found some answers already here on the forum. A couple I have not found yet are: 1. Will he be able to do the dialysis by himself? It is going to be done for about 9 hours every night. We both will be learning but there might be a time that I have to be away for some reason.
We have been told that we must wear masks when we start the dialysis. No problem but wonder if it is necessary. Where we have been going to have his dressing changed is not a sterile place yet we have to put on the masks. I don’t guess we are breathing out germs but they sure are all over the place.
Thank you for any help on these questions. I am sure I will be back with more. I will be asking our nurse these things too but sitting here at night not being able to sleep I am just wondering.
Good morning all. I wanted to add another question. I read several posts last night about people using baby changing tables for their cycler and supplies. Can anyone tell me about your experiences with the changing table or another type of table. I would also like to know the sizes of trash cans that you have found convient to use for the trash. I would think that at least two would be needed.
The beauty of PD is that it can be done alone so yes your husband should have no trouble setting up and hooking up by himself.
To answer your second question. Yes it is important to wear your masks at any time any of the tubes will be open during set-up and hook-up. There are bacteria that are normal in your nose and mouth that would not be good to have in the peritoneal cavity. They could cause a peritonitis which is bad.
Your nurses will go over all the procedures of using the cycler and also the reasons to do things as instructed. When I first began using the cycler, I followed the instruction sheet step by step until it became routine. Once it is routine, things can be set up in about 5-10 minutes. I used a Baxter cycler and found that it took the heater about 15-30 minutes to heat a 5 or 6 liter bag of solution. The time to heat the bags depends on the temperature of them to begin with, colder bags take longer to heat. You do not want to use cold solution as it can cause cramping. You should also be taught how to do manual exchanges for times of power outages or other emergencies.
I used a cabinet which I got from the office area of Ikea that is a bit wider than a night stand, is the same height as my bed and held the cycler and extra bag along with a lamp and clock. It has two doors. My husband put a shelf in it and it held the cycler tubing and extension and drain lines and some of the other supplies. This worked well for me. The nurses may have some suggestions for you. Some TV stands also can work, as well as some kitchen carts.
I am no longer on PD as I was transplanted last April but am willing to answer any questions you may have if I can. I was on PD for 2 1/2 years.
My partner started PD several months ago and I went thru the training with him. His treatments have pretty much become routine at this point.
To answer your first question: unless your husband has some kind of visual or dexterity problem there is no reason he can’t do the treatments himself. Actually he should be able to be 100% independent for the exact reason you mentioned (a need for you to be away). I’m curious though. It sounds as though he’s going to be using a cycler over night. Is he going to be taught to do manual exchanges first? My partner had to do them for several weeks before switching to the cycler. His PD nurse and doctor required this. They sited the example of a possible power failure as just one reason. Also when it came time to switch to the cycler we had a much better sense what the machine was doing. When he started manual exchanges I sat with him the first time he did it at home. When it came time for the second exchange he said “you don’t need to be here.” I was really glad when he said that because I knew he was ready to take charge of his own treatements. When he switched to the cycler I helped him the first few nights then he was on his own. Sometimes if we have company and it’s getting time for him to connect I’ll set the cycler up for him so he can visit longer. Believe me, you’ll come up with the routine that works best for you.
In regard to your second question: you’re right, germs are all over the place but you want to keep them from becoming airborne; your breath would do this. That’s why we were told to also close the door to the room, close all windows and shut off all fans air conditioners etc. while preparing the machine and particularly when the system (PD catheter) is open. The system is only ever open for a few seconds when connecting and disconnecting. Ihave a silly thing I do: If the door to the bedroom is closed I always knock and ask ‘are you decent’ before opening it.
I can’t comment about using a changing table. We have large nightstands which the cycler fits nicely on top of. The additional bags fit on the lower shelf. As far as trash cans we found using 13 gallon kitchen cans work well. However, we line them with cheap black 30 gallon liners because the contents are rather bulky. What we found works best is using one can/bag just for the plastic covers that are over the actual solution bags. They’re very light but quite bulky. This way you can really crush them down without having to deal with tubing and such. The other can is for everything else.
One thing I want to add which I’m hoping doesn’t contribute too much to your stress, but that you should be prepared for, is the amount of supplies you’re going to have on hand at all times. You are going to have a lot of boxes of solution (my partner uses 45 boxes worth a month). On top of that you have the tubing, caps, etc. I’m telling you this so you can start preparing now. What has worked for us is keeping the solution boxes in our basement (we have outside access). Our rule is: whenever you go to the basement for anything you always bring a bag of solution up with you. We keep the rest of the supplies in our computer room across from the bedroom. We have a plastic folding table (about 4’x2’) that we picked up at Walmart for around $25. On top of that we have a couple sets of those small plastic drawer units to hold clamps, caps etc. Also an mixture of boxes and bins for holding tubing ect. Underneath we have 2 larger plastic storage containers for the bags of solutions (that we bring up from the basement. All of this fits against one wall and takes up minimal space. At first we had it all over the room which was a disaster.
I hope this been helpful. I know what you’re going thru with the worry. I did my share and I’m a nurse! I’ve found his PD nurse to be so helpful and a good source of support. If I can be of anymore help just let me know.
Thank both of your for your responces. They have really helped me. I had just gotten over a good cry and logged on. There were your answers to my questions.
We will learn the manuel way for PD too for the possibility of a power outage.(When you live in an area where tornadoes and hurricanes are likely you had better be ready for this.)
I don’t have a basement but have cleaned out my linen closest and have other closets nearby. I have not bought anything yet to hope the cycler. I am looking for something though as our bedside tables are not big enough.
Like everyone else just starting out we are treading water.
I have determined I will not let hubby become an invalid. His genetic makeup is to let this happen but he has too much life ahead of him. He is just 63 years old.
By the way what is used to hold the catheter? I found a belt online to hold it secure. I don’t want to order anything that would be a waste of money. Hubby is concerned about this.
Right now he’s just using a piece of paper tape to hold it to his abdomen. He keeps talking about about ordering a belt but tends to procrastinate. The one he’s thinking about getting is the first one listed below. Check out the second link also. We talked about buying a couple of those and then seeing if my cousin, who is good with a needle and thread, might be able to duplicate them. The products on that site were designed by a former PD patient.
Thank you Duncan. I really like the looks of the Patient’s Pride. I had also found another one last night that was similar. That is why I asked the question. I feel that either of these two would be comfortable. The Kidney Stuff did not look like a product I would want to buy since there are other choices.
On reading the information on the Patient’s Pride I saw where a HEPA filter is suggested or the bedroom. Since we live in the south and a rural setting it gets real dusty. Is it practical to buy of of these filters/
I also read about some pain while draining. The suggestion was to stop draining if the paid got bad. Any suggestions about this. I am writing all this down on a pad for the PD nurse. I intend to get a three ring binder along with some non-glare plastic covers to keep notes and instructions. Does anyone else have anyother suggestions?
I used the belts from ‘kidney stuff’ and they worked well for me to keep the tubing from getting caught in my clothes. I put a piece of tape on the catheter about 1 inch away from the insertion site to anchor the tube so that any pulling was done on the tape rather than the insertion site and catheter.
I used trash bags that I just hooked on the bedroom door handle for trash. One 32 gallon bag held everything for one week for me.
There may or may not be ‘drain pain’. If it occurs it usually gets better with time. Sometimes just shifting position will stop the pain. It all depends on where the end of the catheter is when the drain begins/ends and what it may be pulling against.
Hope your training goes well today and you get your questions answered to your satisfaction.
Good luck with PD.
BTW I am also 63.
Ginger thank you for the input on the "kidney stuff’ belt. Our nurse told us that she only had one patient using a belt. I do think that having one would be better than just taping all the time.
He did have some pain this afternoon with the draining but not much. We did make it through without any problems. We are going to have to do an afternoon exchange for the first month until they can do a KT/V test. I think this is right. I do hope we can do away with the afternoon exchange. It would free him up so much.
After the first month they should do a PET test. This is a peritoneal equillibration test to determine whether he is a high, medium or low transporter. This will help in determining if he will do better on long or short dwell times. They also will test the adequacy of the amount of dialysis he started out on and go from there. I also hope you can do away with the afternoon exchange too as on the night cycler only, your days are free to live without thinking about dialysis.
Glad to hear that training is going well and hope it continues to do so. Your PD journey is beginning. Also it means that a new ‘normal’ is entering your life.
You’re welcome. I never really thought about a HEPA filter. I’m sure it wouldn’t hurt. If you decide to get one I’d run it by the PD nurse as to whether it needs to be off when setting up and when the system is open. I would also ask her/him if it matters where you place it in the room.
As far as drain pain goes my partner described it as more of a discomfort than a real pain and then only at the very end of the drain. If it gets really unpleasant your husband could clamp off for a minute or two and then finish draining. Since starting on the cycler he really doesn’t notice much of anything. Most of the time the cycler finishes the final drain while he sleeps thru it. Over all he noticed more sensation while doing manual exchanges than on the cycler.
As far as pain goes, the first time my partner filled he experienced some significant pain in the groin region that lasted a few minutes. This was followed by an strong urge to use the bathroom. This was explained as his the body’s response to the first treatment. Face it, during a treatment you’re putting fluid where there never was any before. Also, there are a lot of interconnected nerve pathways in that area; particularly for a man. After that initial response he would get what he described a “little tweaks” of sensation on occasion during manual exchanges. I just wanted to let you know that this might happen so if it does you won’t think something has gone wrong.
We use a three ring binder too. It works really well. We keep just about everything kidney related in there including the numbers of his doctors, the kidney clinic, the supply company (we have Baxter) and the surgeon who put the catheter in. We have a section for dietary info, copies of lab work, delivery schedules etc. It comes in really handy.
Ginger and Duncan thank you so much for all the information. We have just had our first shower since the insertion of the catheter. Everything went well.
He is a bit sore from the filllings today. We understand that that is normal.
The PD nurse said a HEPA filter was not necessary. She also had a three ring binder for me. She will keep it until Friday when she gives us a pat on the sholder and sends us out the door. Ha! Ha!!
Baxter is our supplier too. We will recieve our first shipment sometime next week. I doubt if I am really ready for all the boxes. I am doing lots of cleaning out and throwing away of stuff I don’t need.
Welcome to our new “normal” way of life. Thank God there is a way. We both think this is going to work out so much better than hemo.
Thank y’all for being there too. Your responces have meant so much to me. My spirits have really been lifted and hubby’s have too.
D Holland! Hi I have been reading your messages on the forum. I am getting a litle nervous about starting the cycler I don’t know what to expect. I have been on the manuel exchanges for over two months I have been doing rather well.So I guess I will find out on the 15th. my nurse said since I all ready know how to do the manuel I shouldn 't have any problems I will keep in touch.
Cheers Virtsma
If you can do the manual you already know what is happening. When we starte the training we were shown the manual first. Then moved on to the cycler.
It is really no problem to learn. You will be shown step by step. You will have to use it before you are sent home with it. We were given a three ring binder with all the steps listed one by one. After a week or so you will be using the cyler like a pro. Nothing changes. The same every day.
At the most it takes 10 minutes to get ours ready for use.
You will also have telephone numbers to call your nurse or Baxter the supplier if you have a problem.
I am amazed how comfortable we are not with the cycler. It is just a part of our life.
Please keep in touch and let us know how things are going.