First full "fill" experience...

[paul.karen]

TK  keep up the posting.
And you do make me  .  Which makes me think when my time comes it will be ok.
And George yes best of luck to you mate.
P&K

[george40]

I shared in a previous post my surgical experience in getting this catheter placed for pd. The first attempt the surgeon tried to place the catheter blindly and it just did not work. The second time around the surgery was done laproscopically and the results were 100% better. So, for those needing to have a catheter placed, research and ask your surgeon how he/she plans to do it. Some placement techniques seem to yield different results. Anyways, the catheter was placed 10/9/08, just under 4 weeks ago. The flushes by the nurse have gone well, although during drains I have had discomfort. Today, I finally got started with training. I survived the stressful hour drive to the clinic (it was like the Indy 500). Last week my pd nurse asked if I would mind training with another person. I agreed, so there is another gentleman also training at the same time. Thanks to IHD for the great wealth of information in this community. Also to IHD member TK101, thanks for sharing your pd journey, it is helping me tremendously.   

Fill / Dwell / Drain No1.
2000ml (2.5%) bag of fluid. The fill went very well. I did not feel any pain or discomfort. As the fill continued I started to feel full, and after the breakfast I ate (and the 16 oz juice I drank), I felt uncomfortably full. I was wondering for the past week what my stomach would look like full of fluid. Being that I am 6 ft tall, the fluid spread around. While my stomach did not grow outwards much, I had all sorts of pressure in my sides, back and felt like my insides was being squeezed (it was pressure – not pain). It was not a bad feeling, just a different type of feeling.

The drain went well until……. Sharp Pain! Pinch! or whatever you want to call it. So, I only drained 1700gms of fluid. If I can get through this drain aspect of pd I will be a happy camper. Now just to share my training partner’s experience, he had absolutely no pain at all on drains. He is about 4ft10 and very thin. Also, his fill / drain is like a running faucet, I mean its fast. Sounds like a perfectly placed catheter!

Fill / Dwell / Drain No. 2
The fill went well. The dwell time was longer, so I got a chance to walk around for a while with approx 4 lbs of fluid in me. This will take some getting used to. They tell me because of my size I may have to carry 6lbs of fluid (whew, what I had today was enough). An encouraging note, the 2nd fill felt more comfortable than the first.

The second drain of the day went well until, I felt all sorts of shooting aches/pains (down there… cough). The nurse asked me was it bearable since she did not want to leave the fluid in me. I said it was. The drain continued, and amazingly the pain subsided. The nurse had me change the way I was sitting in the big ole chair and sit more on my hip, I did this and pain went away. Supposedly changing positions can help with aches and pains. I actually finished the entire drain and did not have that big pinch at the end. The pd nurse keeps telling me that draining will get better the more I use the catheter.

Thought: I don't know why I thought manual exchanges took an hour to hour and a half each; however exchanges can be done in 30 minutes.   I thought it was a much longer process. Having experienced 2 exchanges today, I am thinking that doing 4 manual exchanges daily might work better for me than being on the cycler for 9 hours each night. I will see how things progress with manuals and the cycler (once I start using it).

[george40]

Thanks for the well wishes for todays training start. TK101 has inspired me to start a thread also about my experience. Thanks to the information on this site, especially reading TK's experiences I was able to make it through the day. 

[BigSteve]

Red from Canada: Thanks for the detailed explanation. I think I will just keep taping. Nothing has come off yet even
when I accidently hit it.

[TK101]

george40:

Yeah that pain is quite memorable! Glad you had a good experience? What kinda equipment are you on? Baxter or Fresenius? Are you going to give the cyler a try? That "full" feeling will kinda go away soon enough, I can walk around with a full load and feel about 90% normal, except for bending over and such. Its only been a week, so its not a feeling you will probably have for long.

Glad to have been a help!

TK101

[RCA]

TK101, I look forward to seeing pictures of your set-up when they're available!  I will need to get a larger trash can like you suggested.

George40, sounds like you had a wonderful first day (despite the pain you experienced)!     Hope today goes just as well!   

[paul.karen]

Well done George 

A question for TK and or George or anyone else who may know.

When on CCPD who sets the amount of time you are on it nightly.
I thought i read where some people are on it for 6 hours others 8 and still some 9 hours or longer up to 14 hours a day?
Is there a calculatin for this??  Does it depend on what kind of disease you have?

I have PKD....

Also TK and George.  Do you think in the long run this 8/9 hours a night is better then 4/5 hours three times a week.
P&K

[TK101]

P&K:

The trainer initially determines your total time on the machine at night. In about a month I will get a PET test to determine y precise (and individual) therapy perscription. They measure fluid in, measure your drain bags and urine output. This allows them to figure out how well PD is working for you and how to best adjust the therapy for you. So basically yeah the time on machine can vary from person to person. I think the main determining factor is how well your membrane works.

Well when you are on PD you really are on dialysis just about 24/7 The machine just gets the solution inside and out of you, the fluid is doing the reall work. Since the fluid is basically in me constantly. Hemo dialysis is only 3-4 times a week, and your pulling all the fluids and toxins in a few ours. I have been told PD is a more natural and consistent therapy.

In the end, it depends on what YOU want to do, with PD, your in charge of your therapy, with Hemo, somebody else is.

Your mileage may vary though...

TK101

[george40]

Hi everyone, today went well. During the first drain I had that achy feeling, but it was a softer pain. However on the second fill/drain I barely felt anything, and had a very mild pinch at the end.  Strange enough, I have had a mild headache since yesterday (it has eased up). After learning about balancing your fluids today, I think too much fluid came off yesterday which could cause headaches. TK, I am using baxter. I think I begin training on the cycler next week.

P&K, right now it seems they are just trying the different solutions to see how it works in your body. After a month on pd I will have the PET test, and that's when they determine your prescription from the results. My pd nurse just keep saying because I'm tall that I'm looking at that 8 to 9 hour range. I think the cycler could work well especially for someone that is used to getting in bed at a decent time and can sleep through the night. If you are working, or have things you have to do daily then doing this at night/day has less interruption on your schedule. Also, once you connect to the cycler you can roam the house, sit, watch tv, surf the net, or whatever since there is 21ft of tubing. As for what is best hemo or pd? Well I have done hemo before and it usually wiped me out. After treatments it would take me some time to get my legs back under me and my head unclouded. This was my experience only and experiences vary. Having had this experience, I decided to give pd a try. So far with pd I do not feel those strong side effects.  (which is why I want it to work out well).

On another note, I received my first delivery which was a partial (15 boxes) to get started. Baxter subcontracted out the delivery to another company and the driver acted as if he did not want to place the boxes where I asked him because he could not use his jack to pull a huge pallet to the room. I told him fine, I'm not going to sign for it take the delivery back and I would call baxter. Guess what? He apologized, unloaded and stacked the boxes. I told him "I'm going through too much to have to deal with this" Kudos to IHD because I learned about how some of the subcontract drivers like to get out of doing what they are required to do. IHD helped prepare me for that. I hope once things get rolling that I will get a regular baxter delivery person.

[paul.karen]

 

Well done George & TK.

I will be so prepared when my time comes they wont know what to do with me.

So the people who delv. supplies also have to place them in your home?  I would have never known this.  Thanks for that heads up.  I dont think i would mind doing it but i can see where some elderly  woudlnt like to do this themselfs.

21Ft of tubuing huh.  I will have to measure some things in my home.   Sadly the bathroom will be out of reach.  As for good sleeper thats not me at all.  Im up a cuple times a night and tossing turning nonstop.  Hopefully my doc can give me some sleeping pills.

Thx guys for all this useful info.
And im glad you both seem to be getting on with it with little problems.
P&K

[george40]

P&K, depending on where the kidney function is and if the blood count drop because of the kidneys not working properly, a little box weighs a ton. Also the driver is supposed to stack and rotate the boxes according to expiration dates. I learned this from reading delivery day stories on IHD and verified it with the pd clinic. Im like you, I get up a few times each night and will struggle to fall back asleep. The pd nurse told me today they will probably prescribe something to help with sleeping.

Well done George & TK.

I will be so prepared when my time comes they wont know what to do with me.

So the people who delv. supplies also have to place them in your home?  I would have never known this.  Thanks for that heads up.  I dont think i would mind doing it but i can see where some elderly  woudlnt like to do this themselfs.

21Ft of tubuing huh.  I will have to measure some things in my home.   Sadly the bathroom will be out of reach.  As for good sleeper thats not me at all.  Im up a cuple times a night and tossing turning nonstop.  Hopefully my doc can give me some sleeping pills.

Thx guys for all this useful info.
And im glad you both seem to be getting on with it with little problems.
P&K

[BigSteve]

On the delivery question: I had my first delivery of PD supplies two weeks ago.  The Baxter driver was great.
He put them exactly where I wanted them. Especially since my PD room is on the second floor. He has a hand
truck that "walks" the stairs. He was very pleasant, even when my neighbor started blowing his horn because the
Baxter truck was blocking his driveway.

[TK101]

So how is everyone doing? I am on week two now, this are starting to fall into place. I noticed that the "full" feeling is mostly gone now. I am only awate of the fluid in my abdomen while I have the 4% in me.

George 40 how is your training going?

TK101

[george40]

So how is everyone doing? I am on week two now, this are starting to fall into place. I noticed that the "full" feeling is mostly gone now. I am only awate of the fluid in my abdomen while I have the 4% in me.

George 40 how is your training going?

TK101

Hello all. TK, training went well. believe it or not two weeks went by fast. The first week, I was doing manual exchanges at home by Wednesday (4 times per day) I have it down to 30 minutes per exchange once I gather supplies. This week I trained on the latest baxter cycler. I started the cycler at home wed. night. Whewww, the drain pain was rough. So night 1 on the cycler I hit drain bypass on two drains and it resulted in me having over 3600g of fluid in me. It was a terrible feeling, so I realized regardless I have to let the machine drain the fluid. Night 2 (last night) things went better. I slept through 2 drains which was nice. If the pain continues my pd nurse may go with the tidal program where the machine leaves some fluid and doesn't drain fully. Other than that, I'm feeling good and my energy is picking up. Hopefully night 3 things will continue to improve. Are you doing a midday manual exchange also? I will check back in soon.

[djgaryb11]

I have been on PD now for 3 weeks, and everything is going fine so far.  I am currently doing it the "manual " way, 4 exchanges a day.  My PD nurse likes her patients to learn the "manual" way , and do it for a few weeks like that before going on the cycler.  My training was for  a week ( 5 days) before I started doing exchanges on my home at home, and then had a few other days of education days and other things i had to take care of.  The only time I felt bloated was on my very first "full" fill, and I am using 2000ml.  Now , I really don't notice at all the fluid in me.  I also noticed that the "pinching" sensation that I get at the end of my drain was much worse on the first few drains I did during training.  Now, I just feel it pinching a little at the end of my drains, and its not that bad as it was the first few times.   I will be getting trained on using the Baxter cycler next week, and I can't wait !    I have already gotten all of my supplies, and it takes up a pretty good amount of space, and I will probably post a pic of it on my next post.  By the way, the Baxter delivery guy was excellent, very professional, and stacked everything exactly where i wanted it and rotated my old stock for me also.  Thats been my experience so far on PD....Gary B.