pd catherter tip

[Quickfeet]

Don't sleep on your exit site. None of the doctors or nurses said any thing about it. Maybe they thought no one would be crazy enough to do it. Well I was. My catheter got pushed inside me and kinked up. I was using the "if it don't hurt, it must be OK" logic.

[Jie]

Thanks for the tip. It seems to be a common sense issue.             

[Quickfeet]

Yes indeed.  Can I blame it on being blonde? Or the 15 prescriptions I take? 

Just trying to make fun of a potentially serious mistake on my part. I hope I wasn't subconsciously trying to sabotage myself.


  Yet another thing i WONT ever be able to do again. Kidney failure has taken so many things from me. Can't eat oranges, no tomatoes, no potatoes, no whole grain bread, no bananas. i will never have a pain free day again. My joints are trashed. My fatigue is so bad I can't have sex. I can't do my job anymore. I have to battle depression and suicidal thoughts. Now i can't sleep on my right side. I am so pathetic have to ask people to mow my yard. I need to change my front brakes but my stomach is tore up plus I probably couldn't even handle removing the tires. Can't I at least sleep like a healthy person. Does everything really have to be taken from me little by little . How long can I fight this battle. Will I be stolen from my little girl before her first day of school? Seriously? After all the other crap I have to accept, I don't even get to choose what side of my body I sleep on. But I'm not bitter. I'm too well beaten down  to be bitter. I    that this catheter works and I am able to reclaim some of my life. I want to be able to ride bikes with my daughter. Push her on a swing.

[tito]

I've been on PD for 8 months. I sleep on my left side where it is located, and I also do yoga. My clinic showed me how to cover the exit site with a bandage, and secure the tube with tape. Plus, I bought these velcro belts that keep everything stable and in place.

Nothing has ever happened - my catheter doesn't move.

Also, the benefit of PD is better potassium clearance. I eat some tomato, banana, potato - my potassium is ok. Now I realize everyone is different, but I would consult with the dietician and have your numbers in front of you. I don't go crazy, but I do eat these things.

I eat a few things with phosphorous, but I am careful to take my binders.

Before you get too depressed, check these things out.

[tito]

PS Quickfeet: Are you on epogen and iron infusions? How is your BUN and kt/v? Getting adequate dialysis? Shouldn't feel so exhausted.

[lunadatura]

My catheter is placed just to the left and slightly lower than my belly button. I sleep on my right side all the time but sometime if I sleep too far on my right side my machine will alarm as i have block the flow so i turn over. I have never had any problems with my catheter since last august when it was installed.

[Jie]

Yes, PD does a very good job for potassium. I have to eat potassium rich food each day to maintain my potassium level. Before PD, I had some trouble for high potassium.

[Quickfeet]

Tito, I haven't started using my catheter yet. bun is 15 i think. creatinine is 4.6. no epogen, I'm only slightly anemic. My iron is good, but my red blood cells and hemoglobin are slightly low. My depression goes up and down. It's at its worst when I am alone and attempting to sleep. I am grateful for ambien.

What kind of Velcro do you use. I have been looking at pd belts and other solutions. I would like to use tegaderm, but its expensive.

[bear3303]

I am so sorry you are going thru so much depression---I am not on dialysis, my husband is, and reading your post sounds like i am reading something he wrote, he feels much the same:( It is pretty awful, for the person doing it and the person who lives with them too:(
I battle depression all the time, and one thing i found is that the ambien was making it worse(I noticed you said you take it)----google ambien and depression and see what you think, perhaps they could put you on another type of sleeping medicine?
I stopped taking my ambien, I can't sleep on my own, so this is what i now do, I take 3 benadryls and 6 mgs of melatonin and a 4 hr muscle relaxer(soma) and that usually does the trick---I know, it sounds like a lot, but that is what it takes for me,but not taking the ambien really helped me!!
Cindy

[george40]

Hello, sometimes I sleep on my catheter side and the other side. But, my exit site is always covered with gause and tape and lately I've been wearing gause netting to keep the catheter from moving (it just stays in place). I got the body gause from my clinic the other day. Also on PD you have more freedom with your diet. Take your binders and you'll learn how much and when to eat the borderline foods. Also meet with your dietician, because mines always encourage me to eat a banana here and there and I like my orange juice (which I drink in moderation.)  Be encouraged and you will learn more as you go along. Hang in there!

[Quickfeet]

I saw the surgeon yesterday and he said that my catheter is backing out of me not getting pushed in. I asked him what would cause that to happen and he said he had no idea. Tommorrow he is going to try repositioning it and hopefully it wont happen again.

The depression is from the kidney failure.  The pain, worry, stress, complications, and the what ifs are the cause of my depression. I have considered trying melatonin, but my doctors don't like me taking alternative remedies.

[Brightsky69]

My PD cath is kind of in the middle of my stomach. i had a tunnel infection so they had to move the new cath up some. Anyway...I sleep on both sides with no problem. I also use the belts and have no problems at night with the cath.
I too eat tomatoes and potatoes.....usually my potassium is low. I never deny myself any foods. I just don't eat the bad stuff very often. I even eat cheese on occasion and i LOVE cheese.

[lunadatura]

"doctors dont like me taking alternative meds" = of course they dont. 1) they fear what they dont know 2) they make no money off of alternative meds

I have done a ton of acupuncture and taken prescribed chinese herbs while taking prescriptions hypertensives. Some of the docs have wanted me to give them a list of the chinese herbs which i have done in the chinese  HA!   they did nt do anything with the list and my acupuncturist was insulted that the docs would even think that my acupuncturist would give me herbs contrary to my meds.

I taken melatonin for sleep when ever i need it and have no troubles. Your docs need to get a frigging clue.

btw - it has helped me a lot to focus on what i can do and not on what i am loosing. PD lets me have a busy active life. I am writting, studying, sailing and spending time with loved ones. I may not be swimming and doing triathlons but i still can have a good life.

[GeeWillikers]

Don't sleep on your exit site. None of the doctors or nurses said any thing about it. Maybe they thought no one would be crazy enough to do it. Well I was. My catheter got pushed inside me and kinked up. I was using the "if it don't hurt, it must be OK" logic.

How long has your catheter been in place?

[GeeWillikers]

I see from your other posts that you've just had your catheter placed within the last month.  Once you have it in a while, your "tunnel" will heal and become more secure and you won't have the issues you describe - your catheter won't move in and out or shift around - it'll become more firmly planted..

Give it a little time and you'll get back to a more normal life.  Understand the frustration and depression, but there are always people out there who are worse off than you.. Count your blessings - you're going to have plenty of years to share with that little girl of yours.  Be patient with yourself and give it a little time.

I don't know why you say you can't eat any of the things you listed - the secret is everything in moderation.  You can't eat a whole pile of bananas, but at least you can have SOME.  A slice of tomato isn't going to kill you UNLESS you eat italian at every meal.  Watch your diet and design a routine that allows you bits of the things you enjoy - it'll keep you from going crazy.  If you have a high potassium food for one meal during the day, just be careful what you eat the other two.  Works fine for me.  My labs came back at 4.5 potassium this month, and I've had lasagna twice.  prior to beginning PD it was over 7.

My first month after being diagnosed and getting on the PD program were horrible too.  No energy, new routine, all the rules, being strapped to a machine, etc.  I'm on active duty in the military, 28 years in fact, and I've never had to ask anyone to help me with anything.  Next thing I knew, I could hardly get from my car to the house without feeling tired.  Today - completely different story.  Blood levels are coming around, anemia is receding, and yesterday I rode my Goldwing to work for the first time since starting this program.  I had my catheter placed back in March so I'm not that far ahead of you.

IT GETS BETER!  GIVE YOURSELF A BREAK!  DON'T BE AFRADI TO ASK FOR HELP - IT ONLY MEANS YOU'RE HUMAN.

[Quickfeet]

I just started capd a couple of days ago. My tube still goes in and out about 3 or 4 inches. When I put my antibiotic cream on my exit site I make sure to put some on that 4 inches of tube. GeeWillikers, how long did it take for yours to secure itself?

"I don't know why you say you can't eat any of the things you listed"

My doctor was a broken record about not eating certain foods. Some of my medications affected what I could and couldn't eat. For example grapefruit; I have 4 different pills that forbid me to eat grapefruit. I was on a blood pressure pill that made me retain potassium. So I already had problems with potassium from my kidney and then that pill made it way worse. Last year I was in the hospital for a week because of my potassium.  I talked to the dietitian yesterday and she told me I will be able to start eating more potassium and protein very soon . I think I am in love with PD.

[Jie]

I just started capd a couple of days ago. My tube still goes in and out about 3 or 4 inches. When I put my antibiotic cream on my exit site I make sure to put some on that 4 inches of tube. GeeWillikers, how long did it take for yours to secure itself?

We are not supposed to put the cream on the tube.

There should always have some movement of the tube. But 3 or 4 inches are too much.

[loopywinks]

Hey Quickfeet-

I totally get what you are saying... this whole process frankly SUCKS and it really can get to me too.  I had my catheter placed back in January and started PD in mid March.  I have been on the overnight cycler for over a month now and I can count on one hand the nights that I slept through the night without pain.  I know some folks who don't have pain at night and LOVE the cycler.  I just endure it so far. It is set to tidal, but it is not always the end of the drain that is painful. I think it has to do with the placement of the catheter (adjusts around inside me) and constipation.  It ticks me off that I am so tired all of the time, that people don't understand the dangers of what we are doing, I can't travel when I want to, can't go to bed when I want to...etc.  It really gets in the way of activities with friends.. not knowing when I will feel up to going out and worrying that I maybe shouldn't be making plans in case I feel rotten.  Work is hard and exhausting and I never feel sharp. I have a pity party for myself a couple of days a month and then try to settle down and try to live again

That being said.. 

I have a twin brother who is almost 13 years post transplant and he is doing great.  He feels good and is very active.  He had a horrid experience and was terribly sick before he figured out what was going on. He was on Hemo for 9 months before my dad gave him a kidney.  He even was in critical care (respiratory distress) post transplant shortly after the operation and still made it through.  Once he healed physically and emotionally (always takes a bit longer for the emotional healing), he pursued his dream job as an animator and is very successful.  I see his success and know that there will be a day that I will have a transplant and be dialysis free...(very hopefully)..   This is a life long struggle (because there is always the possibility of rejection etc).. but I hope that I grow stronger as a result.  I know that I have a better understanding of the human condition and empathy for anyone facing a life threatening situation.. that alone I consider a gift.

I will be thinking of you.. and really.. don't be afraid to ask for help.  Maybe find a couple of things to look forward to every day (I need to take that advice)

Take care of yourself and please keep us posted.

Warmest Regards,

Tracy (aka Loopywinks)

[theone]

Hi Quickfeet,

Think positive.
Kidney failure is better than having cancer.

Take care

theone

[Quickfeet]

update: things are much better now in regards to pd. There is a lot of good with PD, but a lot of not so good too. If any one wants to know about my experinces with PD, ask and I will post more.

Kidney failure is better than having cancer.

That depends on the cancer. There are a lot of cancers they can cut out of you. Off the top of my head I can name three cancers with early detection that I would rather have, prostrate, breast and skin cancer. Kidney failure is with you for the rest of your life. Transplant is not magic, it has its own problems too.

Knowing that there are worse diseases out there doesn't cheer me up. I'm not dead yet so there's still time for me to get those diseases too.

Think positive.

Thinking positive doesn't do any good if you are incapable of "feeling" positive. When my gout flares up and I'm unable to walk for a week. When I am experiecing pain that people say is as bad or worse than child birth. It is impossible to feel positive. When I have done nothing all day but still feel so tired that I think my heart might just stop, its impossible to feel positive. On the other hand, today I feel very positive, because I don't feel like I am on my death bed.

[natnnnat]

Hi Quickfeet
I think this means you are feeling more human today, with some reservations.   I'm glad to hear it.  Gregory gets very down about his gout, very down indeed, and he doesn't have the other stuff going on.  Except at present his knee is cactus, but that's a different story. 

update: things are much better now in regards to pd. There is a lot of good with PD, but a lot of not so good too. If any one wants to know about my experinces with PD, ask and I will post more.

Yes please do.  I would be very interested.  If you feel that its more of a rant than you want to make in a post, then I would be glad to receive a private message about it. 

[Quickfeet]

It's not a rant. It will just take a while to type up. I figured it wouldn't be worth typing if no one wanted to read it. I will type it up. If no one else is interested, I will just pm it to you.

Today I felt good enough to clean 4 rooms, sweep, and vacuum them. Then I used my carpet cleaner on two of them. For me thats amazing. Normally I can't even go up a flight of stairs.

[*kana*]

Sounds like you are having a better day. 

I know that it is difficult to stay positive, but it really does help. 

[gothiclovemonkey]

As far as i was told, on PD the pottasium is no longer an issue (altho it may be different for everyone) The only absolutely forbidden fruits that I have are the Grapefruit and the starfruit (which sucks because its my fav and it can kill someone on dialysis)

Depression sucks, I have been chronically depressed since i was like 11.... Ive been hospitalized many times. I still like to think that i am an upbeat positive person, when im not having an episode. I try to think of the things that I should be thankful for. For example, My son is alive, and for the most part, he is well. I can still love on him, i just cant lift him or play with him as much as id like, but i know he knows i love him. It is very hard to deal with all of this, for everyone. When i first started, I was very down, I felt like my son deserved a better mom, a better situation. I was working, then I could barely get myself out of bed, and I always figured I was just nuts, there really isnt anything wrong with me. I was wrong. Ive been dealing with medical (mental and physical) problems since i was very young, and it never gets easier, and u really begin to wonder why ur dealt such things.
the trick is trying to stay positive about what u can.

I have alot of cath problems as well. it scares me because i was on Hemo for 3 years, i DONT want to go back on hemo ever! PD is soooooooooooooooo much better.

[Quickfeet]

so far, the potassium is still an issue for me. My doctor said my body must really like to retain potassium.

My depression is undercontrol for now. I live for my little girl.