ushav
  • Female
  • Calgary, Alberta
  • Canada
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kidney health

Started this discussion. Last reply by Hilary Mar 14, 2014. 3 Replies

hello,I was browsing kidney foundation's website and found this discussion website. It made for very interesting reading and for people like me to understand more about kidney disease. My husband is…Continue

 

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At 4:22 on July 4, 2015, Pete Sneet said…

Wow Ushav you guys are going through a hard time of this. I hate that for you both.

I wonder what the spike in BP came from?

I know exactly what your going through with the second tube installation. All 3 of mine were done through the same h*** as they were worried about infection switching sites. I hope that does not become a problem with your husband.

The hard part is the hurry up and wait. The pain is not a lot of fun either. I know your husband and you have to be anxious waiting for the 10 day heal time to see what the outcome is.

I went through a period of being mad and upset after the 2nd one failed and thought about giving up on PD at that point but I am glad I stuck it out for the third operation. 

I was looking fro someone to blame and I finally had to come to the realization that it was not anyone's fault that the tube did not work but it seemed to me that there had to be a beter way to insure the tube was inserted correctly the first time.

The thing is we are all so different and we all have different body composition and also there can be some movement over time with the tube and that can cause issues. I worry every time I get on the riding mower that I will jar something and cause the tube to kink.

I finally had to decide to stop worrying about things I can not change and just deal with issues as they come up.

I spent all of Thursday at the kidney clinic signing up for a Kidney transplant to get on the list. Still not on it yet as there are a bunch of things I have to do first in order to qualify. Tests and such and classes and blood samples and yada, yada, yada. Nothing is easy or simple with kidney failure.

I think your in the home stretch now. The training has been done and the second insertion completed so perhaps your husband can start dialyzing on a regular basis and get better.

Have you done the cycler training yet? If not that will be next.

I just unplugged from my machine a few minutes ago and came in for a drink of water and saw your email. Quiet here at 4 am.

Keep me posted as you progress Ushav. My heart is with you.

At 7:27 on June 17, 2015, Pete Sneet said…

Hey Ushav,

Sorry you both are going thru all these drain problems. Here are some possible solutions for you.

Make sure he is not constipated or that his stomach is real full. Try as stool softener first or perhaps even a laxative but that will have him up and down unless it is s a mild one. I myself eat a few prunes and that usually works or some prune juice.

Next would be the positioning of the tube. Make sure there is  a straight line between it and the drain bag. No kinks or curves at all.

I am guessing that they have a bandage over the site right now to keep out infection which most doctors do. What I added to the bandage was a piece of gauze under the tube to lift it away from the skin then applied the bandage this seem to help with kink problems and also kept the tube from marking up my skin. I would have indentations from the tube on my belly. The gauze fixed this.

Then we move on to have him stand up and tilt from side to side several times during the drain. Also lean from side to side and then raise hands above head several times.Right now he is awake hwhen he does this. On the cycle he will be asleep and even though it does not seem possible what happens is there is air gaps in the paretineal cavity and it kind of vapor locks the drain temporarily. If he will just stand up bend over or perhaps even walk a few steps this should clear the drain. I sit up stand up and down a few times and that is enough to clear the drain for me. He may require a little more.

Now let me ask is he experiencing any pain while doing this? Or is it just slow drainage?

Some people drain beter laying down and he might try that. I drain beter standing up and also when I lay down I get more out laying on my left side then my right. Have him try some of these things and see if that helps. My best guess is if it is a some times drains then it is either the positioning of the drain tube or he has a vapor lock and needs to stand up wiggle a bit or walk a few steps and then lay or sit back down. He may have to do that several times. He should drain in about 15 to 20 minutes with a 2000 bag. Make sure and weigh the bags to see how much he is getting out.

That will depend on how well his peritoneal membrane is working with the dialysate. Right now I would suspect he is doing drains every 4 hours and that means he is doing 6 drains a day 24 hours a day. Later on they will reduce the amount of drain time as right now they are working on his training and also they are seeing what his peritoneal membrane processes.

After about a month he will go in and take a PET test. This will determine how well the membrane is working. The burse will do the test and he will bring in his 24 hour urine sample and also 4 of the bags you will have saved. They will mix all 4 bags up into one container then take a sample.

For the most part he should be getting out what he puts in plus some. Not always as I said right now he is on a long dwell time and some of the dialysate is being reabsorbed with longer dwell times. The normal dwell time is less then 2 hours. Make sure and write down his weights as this will also tell you about water retention.

I am sure you know all this but I want to cover everything to make sure you have it un case you forgot something.

Last thing is this. I know this drain and manual exchange is kind of a pain in the rump but it is being done for a reason. Mostly to teach him how to do the exchanges himself and also to get the cavity use to doing this. It will kind of stretch and as time goes by the feeling in his stomach will get better as his stomach will get use to what is going on.

Don't eat big meals before doing the drains. That all causes pressure and can slow the drains. Mostly don't be constipated. And I can not stress that that enough. You can not be constipated and do dialysis it just does not work.

Hope some of this he

At 6:39 on June 15, 2015, Hilary said…
A very Happy Birthday to you Usha, from your friends here at Kidney Connect. I hope it is a worry free day today, for your birthday at least :)
At 6:42 on June 7, 2015, Pete Sneet said…

Hey Ushav,

My email address is richkaminski@msn.com. If you send me your address I will ship you some of the shower shields at least enough for 20 days.

Thanks for the birthday wishes. I appreciate it very much.

At 20:38 on May 23, 2015, Hilary said…
Hi Usha,
I hope your husbands recovery comes along quickly. I had meant to send you a note ahead of the procedure - so thank you for the update.
I have suspended the member that you mentioned, and one other. I too wish that this content/these spammers would stop, but it seems that they are relentless. I appreciate you taking the time to notify me.
Be well.
Hilary
At 16:49 on May 3, 2015, Hilary said…
All you can do really Usha.
Hang in there:)
Hilary
At 7:09 on May 2, 2015, Hilary said…
Good morning Usha,
I see that things are deteriorating for your husband, to the point of needing dialysis. I just wanted to say that I really commend you for reaching out. That can be very difficult to do, especially when you are scared.
Please know that you are both in my thoughts as you go forward. I hope that he will feel much better once he starts dialysis.
Hilary
At 19:35 on January 11, 2015, Pratik Tiki Patel, CPA, CGA, PMP said…
Thank you I will for sure look into that still waiting on getting all the info about my blood type.
At 18:05 on January 3, 2015, Ckd181996 said…

thank you for keeping me in your prayers, it means the world to me 

At 23:34 on November 2, 2014, Joydee Saez said…
Thank you for your prayers for me. My Dr still observing my bloodworks, and he will refer me to transplant after my blood works will be <15% for three consecutive month. As for oct my kidney is 14%. I also pray that I can found my donor sonner. I also pray for your husband.
 
 
 

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