Here It Goes

[Shaks24]

How is your husband doing Nikki? He should have his PD training nurse look at the catheter about a week after placement to change out the dressing and check the healing of the exit site. Hopefully he has minimal discomfort and is doing well. It is very strange having a tube sticking out of your belly. The clinic will add a transfer set to it that will make it even longer if the surgeon did not do so. I purchased 5 of the Stickman PD belts to manage the catheter and transfer set. They work good and cost 20 bucks each. I use them in the shower too. Let us know how everything is going. I did another full exchange today. I will be doing multiple exchanges tomorrow at the clinic and they called saying supplies will be delivered between 8 and 12.

[Bambino_Bear]

We go in for surgery Thursday 10/3 @ 5:30am.  They decided to tell us today that the home visit will be tomorrow at 4pm.  Thanks for all the notice!   

Anywho we are running around like crazy try to make the house good enough.  I think my husband is worried if they see a little dust they might make him do hemo!

Thanks again for all the kind words and support.  :-)

[Shaks24]

The home visit is a breeze. Tell him the surgery is a breeze too. Once they put you under anesthesia you know or feel nothing. Just be sure to follow post surgery instructions from the PD nurse. My hospital said it was ok to shower after a couple days but the PD nurse said no way and to wait at least 2 weeks. Honestly, that was the worst part of it. Having my wife and son there was reassuring. He will be fine and is blessed to have a loving wife like you. Keep us posted.

[Shaks24]

Did a number of exchanges by myself yesterday at the clinic. There is a lot of detail when you follow all the instructions but it went real well. Got my shipment yesterday and it was a bunch of stuff. I took my BP last night and it was 129/85. I have not had a reading like that in many many years even though I take quite a few BP meds. Being full of 2 liters of 1.5 solution made my belly pooch out big time. I hope it continues to go well as I start to train on the cycler in a few weeks. So far not the least bit of discomfort while doing manual fills and drains. 

[Bambino_Bear]

That is awesome!  I am so glad you are doing well!

[Bambino_Bear]

How are you feeling Shaks?  How goes training?  Justin's surgery went well.  He was in a lot of pain at first but is now loopy on pain meds and feeling better,  Thanks again for all of your help and advice.   

[Shaks24]

Hi Nikki. All is well. Got an Iron infusion at the clinic today and did a fill there. Then the PD Nurse came to my house and I did a drain there. Tomorrow she will be coming to my house again and I will do multiple exchanges there. After that I am on my own as far as CAPD goes (manual exchanges). We then will start training for CCPD (cycler). I am so happy Justin did well. Make sure you get some PD Belts. As you transition into training you will see there is a lot of detailed steps in PD. I promise you though that it gets easy to remember as you go through the training. The Fresenius program is very well organized. I am very pleased with my experience to this point. Best wishes for a speedy recovery for Justin. 

[Bambino_Bear]

Glad everything is still going swell.  Keep me updated on how you are doing!  We start training 10/17!

[Shaks24]

On my own yesterday. Did 3 manual exchanges. Had a bit of drain pain last night but it was manageable. I just stood up and shuffled around a bit. Will do 4 exchanges today. Now I got to figure out how I am gonna pay for all this stuff. Got bills from the hospital and the surgeon that total about 13k for the catheter and fistula surgeries. I plan to call medicare next week if they are even open with this government shut down that is. Seems like there is always a challenge.

[Shaks24]

I am now having drain pain on every manual drain. Its not horrible but I definately know its there. Thankfully it seems to be at the very end of each drain. If it gets a little too bad I clamp off and jiggle around.  I filled last night at midnight with 2000ml of 1.5 and drained 2100ml this morning. I am adding Heparin to the first fill of the day. I am doing 4 exchanges per day.

[Joe]

The drain pain will lessen as you progress, and doing the 'PD shuffle' should break the suction and give you relief.
Keep working at it!

[Bambino_Bear]

Sorry you are having pain shaks.

[Shaks24]

Thanks Nikki. This mornings was totally without drain pain. Really wierd.  How is Justin coming along? I hope he is feeling better.

[Shaks24]

Started training on liberty cycler this week. The first day sucked with draining issues and drain pain. Yesterday was a lot better on the Tidal setting. Today we give it a shot at home. Honestly if it is a pain I may opt to stick with manuals. I have got that down.

[Bambino_Bear]

We start training again Monday.  We only got two days in so we are kind of starting all over again.  Keep me posted on how the cycler goes.  They want Justin to switch to it after a month.  He isn't sure if he will like being hooked up all night.  Sorry you had drain pain.  Hope it gets better.

 

[Shaks24]

Its 11:45 pm my time. I am hooked up now at home having done 1st fill and am in first dwell. We will see how it goes. Hopefully I will fall asleep and in the morning I will have completed my first solo on the cycler. Training nurse was very supportive and reiterated it was my choice as to cycler or manuals. I do not like the feeling of being hooked up while sleeping.  Guess I will just have to get over it. Lol

[Deanne]

I hope your first night went well. I went to the cycler during my first week of training. They only trained me on manuals so I'd understand the process. I had drain pain, too, and I still do sometimes after two months, even with the Tidal program. It does get better - have hope! I had trouble sleeping through it at first. That gets better, too. Now I usually sleep through it most of the time. The hard part is needing to watch the clock in the evenings to make sure I head to bed on time. I need to be hooked up by 8:30 pm for it to stop at about 6 am. I still work full-time.

During training, they told me that during the setup process earlier in the evening, I should take it through until it tells me to hook up. It didn't take me long to figure out that this isn't the best place to stop. I do the setup at around 5 - 6 pm and I stop where it tells me to make sure the blue patient line is open, after I confirm the number of bags, before it primes. This way, it's priming with warm fluid and the fluid isn't sitting in the tubing getting cold before I use it. That first burst of cold solution hurt if I primed earlier.

[Shaks24]

It went well last night. Hooked up at 10:30 PM and done a little after 6:30 AM. Had negative 112 UF though. I am doing 4 exchanges with 1.5. Did not sleep well though. Watched the machine like a hawk on all the drains with my hand on the blue clamp. lol

[Deanne]

Sounds a lot like my first few nights. I was so afraid of drain pain that I spent all night was ready to break it off at any second, and I was sure I was going to immediately end up with peritonitis, so I had to keep checking to make sure my bags weren't getting cloudy. I don't think I've had negative UFs, but my UF was low until I added in a green bag. I put a green on the heater now, and hang a yellow. I use the full green bag and about 1/2 of the yellow across four exchanges, but mine take 9.5 hours to complete. My UF is usually about 1100 and ranges between 800 - 1300.

[Shaks24]

I am draining into the toilet with a long drain tube. The only thing I got to check is the tiny little bag built into the drain line with the 2 yellow clamps. Its hard to see. Really hard at 6:30 AM with no sleep. I made one bad mistake last night. I forgot to turn off ceiling fan during disconnect.  I smacked myself in the head this morning and said: self, concentrate. Do you have trouble breaking off the red cones in the solution bags and getting them out of the little slot they are in? That was about the most challenging part of it.

[Deanne]

Hate those cones! What seems to work best for me is to press in on the break with my thumbnail while I give it a shake, then use my nail to push it up further, shake again, repeatedly. Sometimes it also helps to hold the bag like a baby with one arm while I shake the connector end and/or jab a thumbnail into the break to push it up.

I'm not good at making sure everything is clear / no air flowing, especially before disconnects. I have two dogs in the bed with me and if I took time to get up, scrub my hands, block heat vents, and everything else, I'd be changing my sheets every morning, too. One of my dogs *will* pee in bed if I don't get him out as soon as he wakes up. Any movement from me is enough to wake him. My morning routine has turned into a container of antibacterial hand wipes used very throroughly, mask or hold my breath, hand sanitizer, and move as quickly as possible to disconnect.

I'm still on drain bags, but thinking it might be time to ask to change to a drain line.

[Jean]

You guys, as always, have been very helpful. I am going in soon to have my veins mapped and the more I think about it, the more afraid I am. Thank God for all the wonderful people in IHD!!!

[Shaks24]

I totally understand your feelings Jean. What can we do though. Just take one step at a time and know that it will work out. I am sorry you are having to deal with fear or anxiety.  If I can help by answering anything based on my experience to date please ask. It will be ok. We are all here for you.

[Shaks24]

Wow! Tonight I got the red cones to break off and drift into the bags almost instantly.  Yay!

[Jean]

Thanks Shaks. I know I have this support and I am grateful. I just guess I thought this would never happen, and here it is!!! One day at a time!!!