New to Dialysis-My Story

[wbdoug]

Here is my new pd experience.
On August 3rd I had my pd cath surgery. Everything went as planned and no unexpected issues other than the pain I felt in my right shoulder. I didn’t really have any pain in my belly area where the all the action was other than some discomfort. I was prepared for more pain but very pleased that it was not as bad as I thought it would be. I did get some pain medication before they removed the iv for the shoulder though.  My shoulder pain worried me somewhat but the cause was explained to me that some of the air injected into my peritoneum during surgery migrated to my shoulder (thanks kporter85db), and confirmed by a courtesy call from the hospital the next day. The pain did go away after about 3 days. 

The next day I was moving slowly as expected. I was a little sore but I did not require any pain pills. In fact I have only take one pain pill since the surgery.
Went to the dialysis center on Aug 4 to get my cath flushed. Nothing abnormal to report here, so far so good. I only felt a little discomfort at the end of the drain. I guess this is normal, I keep reading about “drain pain”.

Fortunately there were no problems over the weekend. With all this new plumbing hanging out of me I figured it would interfere with falling asleep. This was not the case, I have not had any problems sleeping!

I returned to work on Aug 8 and the only problem I had was trying to find a comfortable spot for this &@#*>? tube hanging out of me. No matter where I taped it, it was still in the way.  The next day I stuffed it in a small camera case and attached it to my belt. WORKED GREAT!!!! I couldn’t even tell I had a catheter. I will post a picture if anyone is interested in seeing it. I will be ordering the pd belt in the near future.

On Aug 10th I went to the center for another flush and had my bandage changed. Everything is healing very well. Can’t wait until I can shower again.
I am not trying to paint a rosy picture and that everything is hunky-dory, but for me things have gone very well and better than expected. Everyone is
different. I do expect some highs and some lows in the future but I consider myself very lucky.The glass is half empty or the glass is half full…..Your choice
I get my first order of supplies on 8/15 and I start training on 8/29.

That’s all I got for now
Bill

[tbarrett2533]

Bill,

Keep going with your posts and updates!!! I love it!!!
 

[dawn24]

Well?  How's it going?  Been following your story!

[Desert Dancer]

The glass is half empty or the glass is half full…..Your choice

How about neither: THE GLASS IS TOO DAMNED BIG!    

Congrats on your successful surgery! Hope your training goes off flawlessly.

[wbdoug]

I had a small(?) issue last night. While doing my household chores my cap came off!!!
I immediately got a new cap on it and called my pd nurse. I also clamped the tube to prevent anything from migrating up the tube.
She told me that since nothing is flowing into the catheter I should not have any problems. I was already scheduled for an appointment today for a bandage change and a flush, so she is going to replace the transfer set.
You can bet I will check the cap every time handle it now. I am a FAST learner.

Bill

[dawn24]

How'd the cap come off?

I have a dumb, noob question.  How long after cath placement surgery do you start getting 'flushes' by the medical staff and begin training to do it yourself?

[wbdoug]

How'd the cap come off?

I have a dumb, noob question.  How long after cath placement surgery do you start getting 'flushes' by the medical staff and begin training to do it yourself?

Not really sure what I did but obviously it came unscrewed.
The day after surgery I was instructed to go to the dialysis center to get it flushed. After that I go in once a week to have the bandages changed and flushed. Had the surgery on Aug 3 and will begin training Aug 29, so I guess training starts 3 to 4 weeks after surgery.
Bill

[wbdoug]

Well it’s been awhile since I last posted so time for an update.
I started my training to do manual pd on 8/29. I’ve got the manual exchanges down pretty good and do not see any issues. One question I do have is Extraneal. Are there any negatives about using the extraneal? Before I leave the center for the day I am filled with this type to dwell until the next morning.

Today I hooked up to the machine (Baxter Home Choice) and NOW I know what drain pain is. Not fun!!!
I sure do hope that this goes away soon. Starting Friday I am on my own, so to speak.

Bill

[tbarrett2533]

Bill,

how are things going for you?
I am just a little unclear if you are doing CAPD or APD??

I have my first PET test on the 20th and was thinking about going over to APD, but I am not sure!!!

[wbdoug]

Bill,

how are things going for you?
I am just a little unclear if you are doing CAPD or APD??

I have my first PET test on the 20th and was thinking about going over to APD, but I am not sure!!!

Just finished week two of training, 1 week for capd and 1 week for ccpd (or apd with Baxter Home Choise).

Last night was my first night of doing ccpd at home. Due to the pain drain I am doing tdal but the initial drain and the final drain defiantly have me wide awake. Overall I did not sleep very well at all. I am a light sleeper so the noises made by the machine made it hard for me to fall asleep. Being hooked up to a tube did not seem to be a problem and I did not have any issues with moving around and getting tangled up.
I also had some minor cramping issues in my lower legs and my feet that helped keep me awake. My pd nurse told me to try using yellow-red-purple. Last night it was red-red-purple.

On the drain pain issue I tried moving into different positions including standing up but none of that seemed to work. One thing that did help was once the pain started I closed off my catheter and while laying flat, I but a pillow under my butt then slowly re-opened the cath and finally got the machine to go into the fill stage. This seemed to work for both the initial drain and final drain. Apparently the new software from Baxter that I have been reading about on this forum does not allow you to bypass the drain until a certain amount of time has passed (like 20 or 25 min) or until it does not sense any more fluid. I drain pretty quick, less than 10 min and the machine wants to extract every last drop making it difficult and painful before it goes into fill mode.
On a possitive note: NO ALLARMS

I am  looking for suggestions on what more can I do about the drain pain and not getting cramps while on the machine.

Also any suggestions about how to deal with the noise would be much appreciated.

tbarrett: I will keep you posted on my progress with apd

Thanks
Bill

[Atooraya]

Bill

Glad to hear things are going well for you.
The drain pains will eventually go away. However, try changing the machine setting to tidal (80%) meaning that on all the drains except the last one it will take out 80% of the volume of solution inside. Make sure you properly set the uf setting. The machine needs this information so that the volume of solution doesne't go over what is comfortable for you. Talk to your nurse for help with the programming.
As far as the cramps, have a glass of water close to you at night. You are probably getting dehydrated.
Regarding the noise, I used to throw a towl over the machine. Some people build an enclosed box that helps block the noise. In addition, over itme you will get used to the noise and sleep right through it.

Good luck,
Fred

[Joe]

Bill,
I'm envious. Currently on CAPD with 4 exchanges a day but transitioning to CCPD hopefully in the next 2 weeks. Scheduled for my PET eval next Monday.

One thing I've found to help the drain pain is to pinch off the cath and do what I call the 'PD Shuffle'. Wiggle around a bit and reposition the catheter inside. The pain is caused by the catheter sucking up to your intestines. Moving around a bit usually breaks it loose and I can continue pain free.

Completely agree with Atooraya about keeping a glass of water close by to help with the cramping. That usually cleans it up for me.

Good luck!

[tbarrett2533]

Just reading your post and others on here... I think i will stick with CAPD 

I heard everyone complain about the following with APD:

Drain pain
cramping
loud machine
alarms
takes forever to set up at night

now my complaints with CAPD:
every 4 hours I gotta do an exchange 
I have to really plan my entire day/life out

anyway I gotta a man that i sleep with (my BF) and he needs his sleep and cant be kept up all night by the noise of my machine..... IDK 
 I would love to here your thoughts on what your pros and cons are for both CAPD and APD since you are/did do both

 

[brandywine]

Just reading your post and others on here... I think i will stick with CAPD 

I heard everyone complain about the following with APD:

Drain pain
cramping
loud machine
alarms
takes forever to set up at night

now my complaints with CAPD:
every 4 hours I gotta do an exchange 
I have to really plan my entire day/life out

anyway I gotta a man that i sleep with (my BF) and he needs his sleep and cant be kept up all night by the noise of my machine..... IDK 
 I would love to here your thoughts on what your pros and cons are for both CAPD and APD since you are/did do both

 

I will concur with all those complications but after doing manual for 2 months, and the cycler for 10, I can tell you that the cycler is the way to go. I felt like I had a spotlight on my head before-because I had to make such a scene if I was in public to do an exchange. Now, I unhook in the morning, and don't think about it again until night, and NOBODY knows that anything is wrong. Since you are still very young, I think that would be a perk. I know that for my job, I need to look healthy and productive.

So here's my list:
Cycler Cons
You can't stay out late (and I switch to manual when I do)
When you travel overnight, you have to lug a huge machine around
When the alarms go off at night-it's REALLY annoying, but it doesn't happen all the time
The noise from the machine is kind of loud, but you get used to it, and sleep right through
If you don't have it on tidal, drain pinch can be bad (You might have a trial/error period)

Cycler Pros
You carry a smaller amount of solution around during the day (less back pain)
You can live a normal life during the day
It is REALLY effective at pulling off fluid
It takes much less time (think of how much time you spend each day washing hands/draining/filling EVERY time)
Fewer exchanges (with catheter) means LESS RISK of peritonitis
You will still have manual bags as a back up or for special situations (like my cruise)

[tbarrett2533]

brandywine,

if you don't mind me asking how do you have sex with APD?
I do not want to have to plan out my sex life...... umm sorry
plus on how on earth would my man find tubes hagin out of me attractive enough to wanna get busy??  (BTW he is fine with my cath) (I think this is more of my problem than his)
also, I "heard" that APD will harm residual kidney function faster than CAPD would
for the record, I do not "time" my exchanges, I do them on my time!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I like what House of Dialysis (Ron) said, "Dialysis works for me, I don't work for dialysis." 
I am just sorta turned off by the machine, I worry about my man the most..... this is my diease, not his and I do not want it to hinder him anymore than it already does. 

[brandywine]

Tbarrett

My nurse asked me the same question!

I've only been married to my current husband for just over a year, and usually sex is before or after hooking up to the machine, but has happened during. LOL!
He is an amazing man who sees past all of that, and it doesn't bother him at all.

It's very physically possible, it just depends on your guy as to its impact on your sex life.