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Author Topic: Officially one year with my hemo catheter  (Read 15960 times)
SweetyPie
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« on: January 29, 2018, 05:56:20 PM »

So it hit the date. Its been one year that Ive been on hemodialysis. 7 years on dialysis total. I am in a wayyy better place than I was last year. Bad infection. I couldnt walk much lost about 12 pounds at the hospital and also lost all my hair on my head. It feels good to have energy and walk up the stairs with no problems. Im happy... and worrisome at the same time. I hear from doctors and nurses all the time that i need to get a fistual :(   im really not up to get one. With me working towards my transplant process I feel its too much at the moment. I heard the catheters last about one year. Does anyone else have a catheter and how ling did yours last?
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lulu836
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« Reply #1 on: January 29, 2018, 07:10:29 PM »

I have a catheter.  Its been at least two years.  I've not had any problems and I will always only have a catheter.  My blood transport system will not handle any other type of dialysis.  I am way too old for a transplant but I'm pretty sure that even if I were a candidate I would not have one.  Too much confusion, too many antirejection drugs, too big a disappointment if it does not work etc. 
« Last Edit: January 31, 2018, 01:30:04 PM by lulu836 » Logged

Of all the things I've lost, I miss my kidneys the most.
kristina
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« Reply #2 on: January 30, 2018, 02:54:10 AM »

Hello Aaisha.Dar,
I have a chest-cath tesio line and I have had it now for over three years and I am quite happy about it. I was told to take great care and keep an eye on it at all times. No drop of water is allowed to come near it and my cath is not allowed to be damaged in any way whatsoever. Perhaps the reason why a fistula has been suggested, is because if anything goes wrong with a cath, there could be possibly much more trouble and the heart could get involved in a big way (at least that is what I was told).
Good luck and don't forget to keep an eye on your cath and take great care.
Best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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                                          ...  Oportet Vivere ...
Charlie B53
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« Reply #3 on: January 30, 2018, 06:31:58 AM »


Dec 6 was my year anniversary for my chest cath.  I had my fistula created in May be had problems with it developing.  Finally started using it only a couple weeks ago and still have problems with the middle section of it and have another fistula-gram scheduled for next Tuesday.  Clinic wants me to have my cath pulled then but I am going to refuse until such times as I KNOW that this fistula is working fine.  Some days it does, many times one needle fails to flow well enough and we end up using one side of the cath.  I'm not willing to start skipping treatments because part of the fistula isn't working properly.

I love my cath, but it would be neat to be able to fall into the river or lake on a hot day this Summer!
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iolaire
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« Reply #4 on: January 30, 2018, 06:48:47 AM »

I am in a wayyy better place than I was last year.
Glad to hear about the improvement!
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
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« Reply #5 on: January 30, 2018, 07:09:49 AM »

Good luck with the fistulagram.  I had a problem with the venous return, but the fistulagram cleared me and it turned out that a new buttonhole location solved my problem. 

So, hang in there ... you may get good news, or an easily effected repair.

Smart move hanging onto the cath, especially since you will have a definitive answer in a week.
« Last Edit: January 30, 2018, 03:06:04 PM by Simon Dog » Logged
Xplantdad
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« Reply #6 on: January 30, 2018, 12:29:06 PM »

Hello Aaisha.Dar,
I have a chest-cath tesio line and I have had it now for over three years and I am quite happy about it. I was told to take great care and keep an eye on it at all times. No drop of water is allowed to come near it and my cath is not allowed to be damaged in any way whatsoever. Perhaps the reason why a fistula has been suggested, is because if anything goes wrong with a cath, there could be possibly much more trouble and the heart could get involved in a big way (at least that is what I was told).
Good luck and don't forget to keep an eye on your cath and take great care.
Best wishes from Kristina. :grouphug;


My daughter had her chest cath for over three years as well, before she got a transplant. Like Kristina above-she was extremely vigilant and took exceptional care of it. Infection has a direct pathway into the heart muscle-so you have to practice perfect aspetic technique :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
SweetyPie
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« Reply #7 on: January 30, 2018, 06:56:12 PM »

With the help of God, i would say I am extremely careful with this cath. Even though it hurts to pull off the dressing i ask for the extra strength tape because the other one just comes off. I am also a germaphobe so it just my daily routine to bathe every other day and change my undershirt. Its my plan to keep it until my transplant. I just dont have the guts to tell my doctor no.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #8 on: January 30, 2018, 07:05:59 PM »

You will do just fine :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Simon Dog
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« Reply #9 on: January 30, 2018, 07:49:16 PM »

i ask for the extra strength tape because the other one just comes off. I am also a germaphobe so it just my daily routine to bathe every other day and change my undershirt. I
Consider asking for a Tegaderm.   I know Fresenius requires an MD order because these cost $1.00 or so each instead of a few cents for gauze and tape.

"Germaphobe" and QOD bathing sounds oxymoronic.  Many people shower or bathe daily; QOD is hardly pushing the cleanliness envelope.

If you want to shower, look into the Korshield (www.korshield.com)    Very effective if used carefully.
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SweetyPie
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« Reply #10 on: January 30, 2018, 08:26:16 PM »

Let me correct myself. I dont bathe lol thats just sitting in your own filth. What I do is fill a smaller tub full of soappy water then get a cup and pour water onto myself until im squeaky clean. Then i get help to wash my hair  while i keep a towel on my cath to keep it nice and dry. What does QOD mean?
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #11 on: January 30, 2018, 08:28:21 PM »

QOD is Latin for every other day :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
SweetyPie
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« Reply #12 on: January 30, 2018, 08:29:02 PM »

I would "shower" everyday but since my blood pressure gets too low in dialysis days its nearly impossible to anything. Its safer to just do every other day with the exception if your changing your clothes daily.
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kristina
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« Reply #13 on: January 31, 2018, 04:21:28 AM »


I love my cath, but it would be neat to be able to fall into the river or lake on a hot day this Summer!

Hello Charlie,
I love my cath as well, especially since it leaves my arms and hands free to continue learning how to play the piano.
I am not overly keen on swimming ...  for me having a cath is just  very much appreciated because it hopefully continues to keep my hands free ...
Good luck wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #14 on: January 31, 2018, 10:23:25 AM »

Hello Aaisha.Dar,
I have a chest-cath tesio line and I have had it now for over three years and I am quite happy about it. I was told to take great care and keep an eye on it at all times. No drop of water is allowed to come near it and my cath is not allowed to be damaged in any way whatsoever. Perhaps the reason why a fistula has been suggested, is because if anything goes wrong with a cath, there could be possibly much more trouble and the heart could get involved in a big way (at least that is what I was told).
Good luck and don't forget to keep an eye on your cath and take great care.
Best wishes from Kristina. :grouphug;


My daughter had her chest cath for over three years as well, before she got a transplant. Like Kristina above-she was extremely vigilant and took exceptional care of it. Infection has a direct pathway into the heart muscle-so you have to practice perfect aspetic technique :)

Hello Xplantdad and many thanks for your kind reassurance.
I do hope Holly is doing well and I send you my kind regards from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #15 on: January 31, 2018, 11:42:09 AM »

Thank you Kristina. Holly is doing very well now. :)
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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
lulu836
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« Reply #16 on: January 31, 2018, 01:43:48 PM »

If you want to shower, look into the Korshield (www.korshield.com)    Very effective if used carefully.

I use "The Shower Shirt" http://www.theshowershirt.com and it is wonderful.  I have used several methods to get my daily shower in the past and as it turns out, this is for me, the best.  It has a waterproof front zipper, a velcro neck closure, a neck tie off and an elasticised "belly band". :2thumbsup;


Consider asking for a Tegaderm.

My clinic uses only Tegaderm but I have experienced the silk tape and gauze at a clinic in Biloxi, MS.  It was a FS clinic.  Didn't care for it at all.
« Last Edit: January 31, 2018, 01:53:04 PM by lulu836 » Logged

Of all the things I've lost, I miss my kidneys the most.
kristina
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« Reply #17 on: February 01, 2018, 07:07:33 AM »

Hello Lulu,
Please take great care. I was told that my chest-cath is there to provide me with my life-support-dialysis-treatment and I was also told that it would not be recommendable to take a shower/bath whilst having a chest-cath, as there could be a chance for a little water to "creep" underneath, with whatever I would try to protect my chest-cath. I was told by medics not to even entertain such a thought as it could severely compromise my chest-cath-survival chances.
Take great care and best of luck-wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
GA_DAWG
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« Reply #18 on: February 01, 2018, 10:02:39 AM »

I was given the same warning as kristina. The first shower after they removed the catheter was, in a word, glorious.
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Simon Dog
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« Reply #19 on: February 01, 2018, 11:41:13 AM »

If you use a Koirshield or shower shirt, it helps to have a shower head on an extension cable so you direct the water rather than just stand under it.   I was able to shower with a Korshield immediarely before treatment and never showed up with damp gauze.
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Charlie B53
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« Reply #20 on: February 01, 2018, 07:31:29 PM »


I was given those same 'Warnings' by my PD Nurse when I first started.  Since I am a Retired Marine Mechanic, and we use some pretty handy chemicals, I asked repeatedly why couldn't I 'Seal' my site using something like Liquid Skin, or maybe some Liquid Plastic Tape (Available in various colors),  Or Dip-It (Neat stuff to rubber coat tools).  All work very well to seal out water.  And all are virus and bacteria free.  Solvents have got to be one of the most sterile things in the shop.

Nurse wasn't very happy with me.  I was told most emphatically "NO"  and "Don't even think about it".

Nurse doesn't appreciate a semi-serious sense of humor.  Mine can be quite sick.

But I bet any one of the three would work well.
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lulu836
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« Reply #21 on: February 01, 2018, 10:08:33 PM »

Hello Lulu,
Please take great care. I was told that my chest-cath is there to provide me with my life-support-dialysis-treatment and I was also told that it would not be recommendable to take a shower/bath whilst having a chest-cath, as there could be a chance for a little water to "creep" underneath, with whatever I would try to protect my chest-cath. I was told by medics not to even entertain such a thought as it could severely compromise my chest-cath-survival chances.
Take great care and best of luck-wishes from Kristina. :grouphug;

The 4x4 Tegaderm topper covering the 2, 2x2 gauze pads covering the cath is waterproof.  The shower shirt can be breached only at the neck if one is careless using the neck closure.  The zipper is double closure and has a full length Velcro cover, top to bottom. The cath itself has been healed over for about 23 months so that it is now a part of my chest.  After it heals and scar tissue takes over the opening where the "hose" goes in the chest and as long as there are no raw spots or tears there is not a potential for problems.  If the clinic insists on using silk tape and gauze pads only instead of Tegaderm there is a great potential for problems.  I don't represent the shower shirt or anything but I have used some unorthodox coverings in order to get a shower and feel human again.......this one works like a charm for me.
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Of all the things I've lost, I miss my kidneys the most.
kristina
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« Reply #22 on: February 02, 2018, 07:22:06 AM »

Hello Lulu,
Please take great care. I was told that my chest-cath is there to provide me with my life-support-dialysis-treatment and I was also told that it would not be recommendable to take a shower/bath whilst having a chest-cath, as there could be a chance for a little water to "creep" underneath, with whatever I would try to protect my chest-cath. I was told by medics not to even entertain such a thought as it could severely compromise my chest-cath-survival chances.
Take great care and best of luck-wishes from Kristina. :grouphug;

The 4x4 Tegaderm topper covering the 2, 2x2 gauze pads covering the cath is waterproof.  The shower shirt can be breached only at the neck if one is careless using the neck closure.  The zipper is double closure and has a full length Velcro cover, top to bottom. The cath itself has been healed over for about 23 months so that it is now a part of my chest.  After it heals and scar tissue takes over the opening where the "hose" goes in the chest and as long as there are no raw spots or tears there is not a potential for problems.  If the clinic insists on using silk tape and gauze pads only instead of Tegaderm there is a great potential for problems.  I don't represent the shower shirt or anything but I have used some unorthodox coverings in order to get a shower and feel human again.......this one works like a charm for me.

Thank you Lulu,
... but I still would not take the risk and dare to try it out. I still use a movable shower-head which I handle very carefully and around my chest-cath I only use a damp flannel, again very carefully. Of course, all that takes time, especially since I am ever so careful about it... Better safe than sorry...
All the best wishes and good luck from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #23 on: February 02, 2018, 07:25:41 AM »

Thank you Kristina. Holly is doing very well now. :)

Thank you Xplantdad for the update. I am very pleased to read that Holly is doing very well.
Thanks again and all the best and good-luck-wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #24 on: February 02, 2018, 08:31:38 AM »

Kristina, I KNOW how extremely careful you are with your cath, but if it accidentally became wet, what would happen next? 

Also, does the site ever become uncomfortable when you are asleep?  Do you have to make sure, for example, that you don't sleep on your tummy?

You may remember that my mom had a cath for 18 months; I should have thought to ask her these questions!

Thanks for your replies.  You are the poster child for how to keep a cath safe!
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