Already a problem..help!

[Joanniebop]

As some of you know, since I introduced myself and hubby recently, we are new to PD. Just finished up the classes today and I have the Fresenius machine by the bedside and ready to go.

The problem is that Chuck is way, way puffier ( retaining fluid thru-out his body ) now than before we started the PD on Tuesday. The time on PD in the hospital he had no swelling, now he can just about walk. He just had a fall in the bathroom and it took about 45 minutes to get him up and into bed. He had no strength in his legs. Don't know if it's because of the swelling or something else. Now I know if I call the PD nurse, she will say that it's because of the pretzels that he was eating during class. We kind of made a joke about the fact that he was eating salted pretzels while on PD. I don't know but I fell like it has something to do with the PD that has caused him to retain so much fluid. He did take off what was put in him.

I really don't know what to think. Could it really be the pretzels?  She told us we could skip Sat. night PD and start on Sun. night. Hoping he'll do better off the PD.

Thanks for your help.

Joannie

[Kathleen]

If it was my hubby, I would call the PD Nurse. Keeping your hubby in my prayers.

[Joanniebop]

Thanks Kathleen. I will surely have to call tomorrow if he doesn't look any better.

[Kathleen]

Your welcome Joanniebop. Let us know how things are going.

[thegrammalady]

a few pretzels, even ones with salt are not going to cause that kind of fluid retention.

[goofynina]

This happened to me when i first started Joannie,  that is how we found out i am a high transporter,  i cannot have the fluid dwelling in my longer than a certain period of time (1 1/2 hour) or my body starts re-absorbing it.  Do you have any manual bags?  If you do, you may have to manually remove that extra fluid off of him until you talk to your nurse.  Not familiar with the Fresenius machine so i dont know how to bypass after a certain length of time.   I advise you to call your PD nurse NOW,   too much fluid on him is very dangerous, they do have an exchange right?  His life is way to important to worry about disturbing anyone, you call them girlfriend, and you make sure they do something for you...  If i fall or even sit on the ground, i have no strength in my legs to get back up, i need a chair to help me get up from wherever i am, cant even get out of chairs without my arms pushing me up, it is frustrating, but what can i do? Good Luck to you, please keep us posted and you call your PD nurse A.S.A.P.    You and hubby will be in my thoughts and prayers..     Goofynina

[Sluff]

I don't have any experience with this but I just want to send my prayers for your husband for a quick resolution to the fluid retention problem. Goodynina knows her stuff, call now!

[thegrammalady]

hope you get it figured out soon, good luck

[Joanniebop]

Thanks so much for all of your quick and helpful replies.

I did call the PD nurse and she wants to put him on a stronger solution, so rather than a 1hour drive to the place where we had the training, Fresinius has a dialysis unit thats about 3 miles from my house. I called and asked for a 2.5 bag and told them that I would replace it and they agreed. I just walked in the house with the bag and realized that even though its a fresinius unit, they gave me a baxter bag. The PD nurse was not there so I spoke to a hemo nurse that really didn't know much about PD. I am so disgusted. I will call the PD nurse back as soon as I calm down and see what she says.

I'll keep you posted and thanks again. I don't know if you know just how helpful you are and just typing out my frustrations is calming.

Joannie

[Chicken Little]

I'm sorry your having problems.  Were you trained on the machine only?  Normally when I get a fluid overload I use a manual exchange to get it off quickly.  Too much salty food can zoom my weight up 3-10 pounds in no time, and it is really uncomfortable.  I've pretty much had to nix all added sodium and processed foods from my diet.  I only get what occurs naturally in foods.

Good luck.

[Joanniebop]

Chicken, I would have thought that a manual exchange would certainly help, except that I was not trained to do a manual.
 I called the PD nurse back after I realized that I got the wrong solution and she said to absolutely make sure that he does not have any extra salt and to really limit his fluids and tonight I will do our first home treatment on the cycler..we upped the amount for 1200 to 1500..and from there we will see how he is doing tomorrow.

Luckily we had a visiting nurse come in today ( since he just got out of the hospital on Monday) and she wasn't too concerned and even his blood pressure had come down form this morning when I took it.

Thanks everyone and I'll let you know how we make out tomorrow.

Joannie

[goofynina]

Hi Joannie,  I am glad things are calming down a bit but if you can request to have a couple of 4.25% bags,  those are pretty strong and really help pull some of that extra extra water out, just to have on hand might be helpful to you in the future.  Please keep us posted on how you and hubby are doing.   

[Joanniebop]

Nina., great advice. My PD nurse did have me ask at the Fresinius unit if they had the 4.25 ( even though we now know that they only carry the Baxter and it wouldn't have helped anyhow) but I will definitely be more prepared. I am expecting my first delivery from Fresenius on Monday. I don't know exactly what the PD nurse ordered, but will check for the future.

Thanks for everything.

Joannie

[goofynina]

If you dont mind Joannie, when you get that delivery, can you just let us know what you receive that way i can tell you if there are other things you might need and the nurse didnt order,  When i first started PD they left out a lot of little things that i needed.  Glad to be of any help i possibly can girlfriend,  we all are   

[Joanniebop]

Nina, I will definitely let you know on Monday.
You are a sweetie!

Thank you..Joannie

[Wattle]

Hi Joannie,

I am glad everything seems to be getting under control. I am on the Fresenius Sleep Safe APD cycler. I am in Australia and I think my machine is different than those used in the States. It amazes me that they didn't train you to do a manual bag. It maybe worth asking to be trained for future need. We had a blackout a few weeks back and with no power I had to complete my treatment the next day using manual bags. I also do a manual exchange during the day which helps with fluid gain. Having the stronger bags as a back up is a must. Are you in charge of the ordering in the future or does your nurse do it? I have to do all my ordering myself which is better because I know what I use and need.

It is hard the first couple of weeks, but it will get better as both your husband and you get use to the whole treatment. Call the nurse as often as you need, even if you think it is a silly question.... thats what they get paid for. I think my unit wanted to change the numbers on me, I called so many times     I even called the toll free number in the middle of the night!

Also read the manual for the machine back to front and know how to dim the lights, check the drain amounts and some of the alarms ect. If they didn't give you a manual, ask for one.

You will have it under control in no time. You are already doing a great job!   

[Joanniebop]

Wattle, thanks for your great advice. I do think that I will be the one ordering the supplies. I am going to give Nina a run down of what I receive tomorrow.

Now if you will indulge me:

I used my own judgement and did not start the PD last night. I noticed that Chuck was urinating a large volume and his feet started to go down. By nighttime his feet were almost back to normal. I didn't think that the PD treatment was necessary. Did I do right? The PD nurse is going to call me today to see how our first home treatment went and I'm not sure how she is going to react when I tell her that I didn't put him on the PD. his blood presssure was down also as it is this morning.
I guess without beig able to draw blood everyday and check on toxens that might be built up the only way to judge is weight, blood pressure and maybe how he is feeling?
Thanks for all you input.

Joannie ( and Chachi)  Chuck

[Chicken Little]

She's probably not going to be happy you didn't start.  When you skip a treatment, they like it to be their idea.   

How is Chuck feeling?  When I had to stop treatments due to the tear in my peritoneum, it took less than a day before I started vomiting, etc. again.   I definitely wouldn't skip any more treatments based on if he's swelling or not though and I would request training on how to do manual bags ASAP. 

[goofynina]

Just remember Joannie, PD is not only removing excess fluid, it is cleaning the toxins out of his blood,  if he is urinating large volumes, that may not mean that the toxins are being removed.  I would definetly do it tonight so he wont get all those horrible symptoms, vomiting, etc...  Hope all is well, hang in there girlfriend, it WILL get better

Goofy

[Joanniebop]

All set up and ready to go for tonite..our first treatment at home..it's exciting..am I nuts?

The first drain ,during training ,was the only one that alarmed so I think we'll head up to bed around 10:00PM .

Thanks again.

Joannie

[goofynina]

You go Girl... here's to a peaceful, alarmless night, happy sleeping  

oh, and one more thing, girlfriend, your part of the family, and we're ALL nuts     xoxoxxo

[Wattle]

Joannie,

A large majority of patients still urinate for many months (some years) after starting dialysis. Depending on the reason for your kidneys failing. Your kidneys are able to pass some fluid but they may not be filtering any toxins at all out of the blood stream.

Good luck tonight !   

[goofynina]

JoannieBop?  How are things working out for you, i never receieved the list of things you got in your delievery so i am taking things are working out pretty smooooothly for the both of your, (at least i am hoping it is).  Please let me know if there is anything you need to know.  We are all here for you. 

[Joanniebop]

Hi Goofynina,

Everything has been going pretty smoothly. As a matter of fact, last night was our first night without any alarms.We've had to make a few adjustments with the solution because Chuck is still retaining a lot of fluid and his pressure is sky high, but I am in contact with the PD nurse everyday. I tell her want his pre and post weights are and of course the BP, sittting and standing.

As far as the supplies , 34 boxes of 1.5...5 boxes of 2.5 ( I had another 9 boxes delivered yesterday) and 5 boxes of 4.25...gloves..masks..tape..the caps...bandages.. cleansing pads.. alcohol pads...cover for ...the incision ...gauze... 3 or four boxes of drain tubing and 3 or 4 boxes of patient tubing.

They called today for my next delivery in 2 weeks..added a lot more of the 2.5...

I've been reading the post on this forum and it seems like everyone has some problems relating to their renal situations and I just don't want to be a bother, to you and others that are dealing with your own situations.

But, I DO absolutely appreciate your concern..It's such a good feeling to know that you and others on this forum know what we are going thru.

Just got a call from our primary Dr. and has finally called in a script for Lexapro for Chuck, because he has been experiencing super anxiety. Never really had it before, so, I'm gonna run to the store and get his meds. hopefully it will help.

thanks again.

Joannie

[MyssAnne]

Joannie, I am so glad it's going fairly smoothly so far for Chuck! As for the Lexapro,
I noticed a difference right away. Chuck may not, but it is mild, and easy to take,
so I will be crossing my fingers that it works!  As for burdening us, that's what we're
here for, for you to unburden yourself! Go for it, girl!