Lake water with dialysis access port (update)

[Socalx09]

Hey guys,

My dad is getting very close to needing dialysis or refusing treatment. He has a procedure scheduled in November for the access port. He is not sure he is going through with it. They have told him he cannot swim in lakes, or go hunting. My dad has refused to do anything for years because he thinks not doing these things will reduce his quality of life. He doesn’t see a point in continuing if he can’t enjoy havasu. I have tried so many different ways to talk to him about it. But, he sees this an entire different way then me. He’s 59.

There has to be a way that others manage to swim in the lakes? I have been trying to convince him to just wade in the water, accept the change by not getting fully in the water as a compromise, but he is too stubborn. He doesn’t travel anywhere else. Just havasu and hunting trips.

I have searched online for answers, but it’s a big no for swimming in fresh water lakes. I am wondering if anyone on here has experience with dialysis ports and the lake? I figured this would provide more real world answers.

 

[J DUNN]

I'm diabetic and wear a pump and sensor that both attach to my abdomen and only penetrate skin with a 1/2" canula (plastic needle). The sites get infected very easily at Powell and I need to replace and move to new area at least once during a weeklong trip. I would venture to say Powell is cleaner than Havasu but don't quote me on that. Add to that the port goes right to a vessel, that is some scary chit if get bacteria straight into the blood stream especially with compromised health in the first place.


I had an employee that had kidney disease at the age of 40 yo. He went on "the list" for a transplant but after dialysis started he was MISERABLE. The transplant wait time in SoCal was so long he moved to Iowa got a new kidney in 3 months then moved back home to SoCal. A lot happier and healthier now than when he was on dialysis.

As a diabetic, dialysis is the #1 motivator for me to take care of myself NOW, so I won't need that in the future.

Best of luck to your pops.

 

[Waterheater]

Sorry to hear this about your Dad. Dialysis sucks! No way around it. But it is better than the alternative. I had a port, before they put my fistula in. It wasn't the end of the world. I went to Havasu and Powell a bunch of times with it. But your right I never got to deep in the water. I would wade around up at the sand bar or on the beaches. I did get some really weird looks from people when I had my shirt off with two tubes sticking out of my chest. As far as outdoor stuff, it was business as usual. Went deer hunting, rode bikes, ATV's, did everything. I just keep it covered. I had water proof bandages that I would keep on it. When I showered, I had the bigger bandages I would wear so it wouldn't get wet. I never had a problem with it getting infected. I would find out if they are going to give him a fistula. I only had my port for, I think 4 months. With the fistula you have no issues with water, swimming, or anything you want. I can't imagine they wouldn't do a fistula on him. I hated the port. But the only think it keep me from doing was diving in the water. I feel bad for your Dad. If he is to the point they want to but him on dialysis, it will make him feel a lot better and get some strength back.

 

[Mikes56]

My dad had a shunt in his forearm when I was a kid. Mom and Dad would take me to Havasu and he would keep his arm out of the water when he went swimming.
It seemed to work out from what I remember.

 

[rrrr]

I would listen to his doctors instead of SGOTI. Their opinion is the real world, not RDP.

If he stays out of the lake, no infection. If he doesn't and it becomes infected, he might die. It's that simple.

Realize that in his condition, his immune system has weakened considerably. Is it worth the risk? I guess he needs to decide.

 

[Ace in the Hole]

My dad had a shunt in his forearm when I was a kid. Mom and Dad would take me to Havasu and he would keep his arm out of the water when he went swimming.
It seemed to work out from what I remember.

My dad was on dialysis while dying of ALS. He used to get this clear patch kit that would cover his ports..(he did the at home 8hr deal), I don't remember what it's called but it prevented water intrusion but he also didn't go stand with it underwater. For the record I agree with @rrrr talk directly to your doctor about it.

 

[WYRD]

This site has several options they turn red if they get compromised and wet. I don't know if I would chance with the bacteria in fresh water lakes though..like others have said that is a Huge risk to take.

 

[DRYHEAT]

If he can swim in chlorinated pool water, maybe he just needs to change up his routine a little bit, boat in cooler weather when the water is cold and he won’t want to get in the Lake. chill in the pool in the summer. Good luck I hope you can find some middle ground.

 

[Wizard29]

 

[Berdes]

First off he should see another doctor. There a lot of people with ports that continue with their active life styles. Second, it's still his life to live as he see's fit. Very sorry if that seems course, but so long as he's of sound mind, it's his decision.

 

[Joe mama]

Definitely stay out of the channel, even if on land.

 

[Socalx09]

I appreciate all the advice. I was trying to find someone on here that has managed the lake with dialysis to kind of show my dad it’s possible. I think when he hears the doctors say what he can’t do, his mind shuts off and he would rather not seek treatment. He probably can’t do the multi day tent hunting trips anymore, but I’m sure he can do day hunts. The lake is huge deal to him. I am not even sure what they are doing for the procedure as far as the port goes. He is finally letting me go to his doctor appointment before the procedure so I can understand what exactly is going on. He doesn’t talk about it to anyone and I’m really not sure what he is paying attention to. So hopefully they can do a fistula like @Waterheater said which allows him to do more. I’m hoping to learn more information at the appointment as well.

My dad really would risk going in the lake with a port, or he would just not seek treatment at all. He’s just that stubborn. So I was hoping there was someway to even try to protect the port as much as possible if he does risk it. Like the waterproof bandages, but I know there’s a huge risk to that. He is really set on this. To me, it’s hard to comprehend why he can’t just enjoy the lake in other ways, and modify his life. It’s more of an all or nothing in his mind. I know it’s his decision and dialysis is hard to deal with.

 

[monkeyswrench]

I had a "pick line" they called it...it went in my arm, and extended towards my heart. They used some kind of ultrasound deal on install. I had it for two months for IV for MERSA infection meds. I don't know how it compares to dialysis ports though.. I would wrap the caps and my bicep with Reynolds wrap...and try to keep that part out of the water. No diving under, no swimming, but got to be on the boat and wade in the water. It was a compromise...but beat the alternatives.

 

[Looking Glass]

I had a "pick line" they called it...it went in my arm, and extended towards my heart. They used some kind of ultrasound deal on install. I had it for two months for IV for MERSA infection meds. I don't know how it compares to dialysis ports though.. I would wrap the caps and my bicep with Reynolds wrap...and try to keep that part out of the water. No diving under, no swimming, but got to be on the boat and wade in the water. It was a compromise...but beat the alternatives.

Several years ago I came down with the MERSA VIRUS while in the Hospital. I was very lucky as it disappeared itself. I was told very common in Hospitals.

 

[monkeyswrench]

Several years ago I came down with the MERSA VIRUS while in the Hospital. I was very lucky as it disappeared itself. I was told very common in Hospitals.

Got mine from my second spinal surgery...at a very high end hospital in the western Los Angeles area. Due to the proximity to the spinal cord and such, they carved out a bunch of infected tissue, and stuck me on an IV. That may have been what led to surgeries 3 and 4...damage control.

 

[WYRD]

This site has several options they turn red if they get compromised and wet. I don't know if I would chance with the bacteria in fresh water lakes though..like others have said that is a Huge risk to take.

Forgot the link

CATH DRY

 

[Ziggy]

I appreciate all the advice. I was trying to find someone on here that has managed the lake with dialysis to kind of show my dad it’s possible. I think when he hears the doctors say what he can’t do, his mind shuts off and he would rather not seek treatment. He probably can’t do the multi day tent hunting trips anymore, but I’m sure he can do day hunts. The lake is huge deal to him. I am not even sure what they are doing for the procedure as far as the port goes. He is finally letting me go to his doctor appointment before the procedure so I can understand what exactly is going on. He doesn’t talk about it to anyone and I’m really not sure what he is paying attention to. So hopefully they can do a fistula like @Waterheater said which allows him to do more. I’m hoping to learn more information at the appointment as well.

My dad really would risk going in the lake with a port, or he would just not seek treatment at all. He’s just that stubborn. So I was hoping there was someway to even try to protect the port as much as possible if he does risk it. Like the waterproof bandages, but I know there’s a huge risk to that. He is really set on this. To me, it’s hard to comprehend why he can’t just enjoy the lake in other ways, and modify his life. It’s more of an all or nothing in his mind. I know it’s his decision and dialysis is hard to deal with.

He's my age.
I totally understand what he must be feeling. More or less, why the F go boating if I can't get wet. Some years back I had a huge gash in my foot all bandaged up went boating but stayed out of the lake..........for maybe 4-5 hrs then I just couldn't take it anymore.
That's what we do when we boat here.
If my life is in jeopardy I would most likely have to sell everything associated with it and never look or go back....or else my sanity would not survive.
If there is any kind of option that could help him with the port and swimming it's certainly worth exploring, imo his mental/emotional well being needs to be considered too.

 

[rrrr]

I had a "pick line" they called it...it went in my arm, and extended towards my heart. They used some kind of ultrasound deal on install. I had it for two months for IV for MERSA infection meds. I don't know how it compares to dialysis ports though.. I would wrap the caps and my bicep with Reynolds wrap...and try to keep that part out of the water. No diving under, no swimming, but got to be on the boat and wade in the water. It was a compromise...but beat the alternatives.

A PICC, or peripherally inserted central catheter, is, as you said, installed to allow infusion treatment. I had one when I acquired a staph infection while hospitalized for a replacement knee replacement.

Didja get that? The area around the knee that had been replaced two years earlier became infected, then I contracted the staph infection. The infection in the joint required removal of the prosthesis, and a spacer block of some sort was inserted. I didn't have a knee for three months. They inserted the PICC at the same time the prosthesis was removed.

After the surgery, I was in fucking agony from the pain. This boy has had dozens of surgeries, and this was pain like I didn't know existed. Fortunately for me, my primary care physician happened to be the consulting floor doctor of the hospital I was in, and when he saw what was going on, he ordered a 4 mg injection of Dilaudid into the PICC every four hours.

The PICC port is placed in the arm below the bicep, and the catheter is threaded through a large vein. The end of the catheter is about 25 mm from the heart. It's placed there so the antibiotic infusion is distributed throughout the body.

When the nurse pushed the 4 milligrams of Dilaudid into the port, it took about three seconds for it to hit my brain.

DONNG! It was like someone hitting a giant Buddhist gong in my head. Things were immediately better.



But seriously, what a fucked up four months I experienced after spending Christmas and New Years in the hospital. In had to use a walker the entire time, because I had no knee joint. A nurse came to my house every other day to do an antibiotic infusion until May, and the prosthesis was replaced in March. The antibiotic infusion cost my insurance carrier $2,200 per dose. When it was all done, the bill was around $440,000 for everything.

The first months of 2010 were not fun.

 

[monkeyswrench]

A PICC, or peripherally inserted central catheter, is, as you said, installed to allow infusion treatment. I had one when I acquired a staph infection while hospitalized for a replacement knee replacement.

Didja get that? The area around the knee that had been replaced two years earlier became infected, then I contracted the staph infection. The infection in the joint required removal of the prosthesis, and a spacer block of some sort was inserted. I didn't have a knee for three months. They inserted the PICC at the same time the prosthesis was removed.

After the surgery, I was in fucking agony from the pain. This boy has had dozens of surgeries, and this was pain like I didn't know existed. Fortunately for me, my primary care physician happened to be the consulting floor doctor of the hospital I was in, and when he saw what was going on, he ordered a 4 mg injection of Dilaudid into the PICC every four hours.

The PICC port is placed in the arm below the bicep, and the catheter is threaded through a large vein. The end of the catheter is about 25 mm from the heart. It's placed there so the antibiotic infusion is distributed throughout the body.

When the nurse pushed the 4 milligrams of Dilaudid into the port, it took about three seconds for it to hit my brain.

DONNG! It was like someone hitting a giant Buddhist gong in my head. Things were immediately better.



But seriously, what a fucked up four months I experienced after spending Christmas and New Years in the hospital. In had to use a walker the entire time, because I had no knee joint. A nurse came to my house every other day to do an antibiotic infusion until May, and the prosthesis was replaced in March. The antibiotic infusion cost my insurance carrier $2,200 per dose. When it was all done, the bill was around $440,000 for everything.

The first months of 2010 were not fun.

The thing I remember the most about the antibiotics was how cold it made me...They had me keep them in the fridge. You know, the "crisper" drawer? Twice a day, plug into the pump, hang the IV, and watch TV. I about shit when the nurse came to remove that thing from my arm. I was pretty doped up when they put it in. I remember them asking how tall I was, which made me wonder how far they were going. The nurse pulled out this noodle thing out of my arm, like the clown scarf thing. 18-20" of hose being pulled out of my arm. It was quite an interesting experience.

 

[dave29]

Tell your dad to do whatever it takes to stay alive. New developments are happening all the time that will prolong life. I'm on immunotherapy and it's working. I also have one kidney. This past week I read that doctors were successful in transplanting a kidney from a pig to a human. The kidney was not actually inserted into the human but was left outside to do it's work. The point is, they may be 2-3 years away from having this available. That would eliminate the backlog of waiting patients. Also, the pig was somehow genetically altered to eliminate rejection by the human body. I would give up swimming and hunting if it meant that at some point I could get back to a normal life.
Please tell him to hang in there!!!!

 

[Ziggy]

A PICC, or peripherally inserted central catheter, is, as you said, installed to allow infusion treatment. I had one when I acquired a staph infection while hospitalized for a replacement knee replacement.

Didja get that? The area around the knee that had been replaced two years earlier became infected, then I contracted the staph infection. The infection in the joint required removal of the prosthesis, and a spacer block of some sort was inserted. I didn't have a knee for three months. They inserted the PICC at the same time the prosthesis was removed.

After the surgery, I was in fucking agony from the pain. This boy has had dozens of surgeries, and this was pain like I didn't know existed. Fortunately for me, my primary care physician happened to be the consulting floor doctor of the hospital I was in, and when he saw what was going on, he ordered a 4 mg injection of Dilaudid into the PICC every four hours.

The PICC port is placed in the arm below the bicep, and the catheter is threaded through a large vein. The end of the catheter is about 25 mm from the heart. It's placed there so the antibiotic infusion is distributed throughout the body.

When the nurse pushed the 4 milligrams of Dilaudid into the port, it took about three seconds for it to hit my brain.

DONNG! It was like someone hitting a giant Buddhist gong in my head. Things were immediately better.



But seriously, what a fucked up four months I experienced after spending Christmas and New Years in the hospital. In had to use a walker the entire time, because I had no knee joint. A nurse came to my house every other day to do an antibiotic infusion until May, and the prosthesis was replaced in March. The antibiotic infusion cost my insurance carrier $2,200 per dose. When it was all done, the bill was around $440,000 for everything.

The first months of 2010 were not fun.

Ok, think I'll skip the knee replacement surgery I've been needing/considering for several years.

 

[monkeyswrench]

Ok, think I'll skip the knee replacement surgery I've been needing/considering for several years.

I figure I've had enough spinal surgeries already...so I've told two doctors to pound sand. I figure everything still works, so I'm not doing it. From the pics you've posted in the past, you don't hobble around. Run the oem parts until the wheels fall off, then go in for the overhaul

 

[Ziggy]

I figure I've had enough spinal surgeries already...so I've told two doctors to pound sand. I figure everything still works, so I'm not doing it. From the pics you've posted in the past, you don't hobble around. Run the oem parts until the wheels fall off, then go in for the overhaul

That's kinda my plan, even my GP doc said similar.
I'm able to get around and do many things but I'm still quite limited on how aggressive I can be. When I golf or do some racqueteball I look like Forrest Gump just before he ran from the bullies.

 

[monkeyswrench]

That's kinda my plan, even my GP doc said similar.
I'm able to get around and do many things but I'm still quite limited on how aggressive I can be. When I golf or do some racqueteball I look like Forrest Gump just before he ran from the bullies.

Sadly, at 44, I know what you mean. After hiking some 30 miles last weekend, my back and neck are still talking to me.
Like I told my first neurosurgeon, I'd rather be in pain, than feel nothing at all!

 

[DRYHEAT]

That's kinda my plan, even my GP doc said similar.
I'm able to get around and do many things but I'm still quite limited on how aggressive I can be. When I golf or do some racqueteball I look like Forrest Gump just before he ran from the bullies.

Run Ziggy run!

 

[lbhsbz]

Depending on where it is…shave the surrounding area very well and tape a piece of plastic sheet over it?

Maybe a dry suit? Obviously wouldn’t work in summer…but would probably be nice right about now

 

[DLC]

Find out where the port will be located on his body and get some water proof bandages and a do a few trial runs before the port gets installed.

My idea is get him semi used to having the bandage and he will see what he can do and it’s not that bad

 

[jeteater1]

My wife has a belly port. She was told no lakes or public pools. Rivers , private pool and ocean are ok.

 

[Socalx09]

I haven’t been on here in months due to all the family things going on. I was in full time caretaker mode. Plus- I ended up moving in with my boyfriend so dealing with a new move plus health scares was a lot.

My dad ended up having the surgery after all his tough guy talk. He was pretty scared going into it, but he got the port in his arm. He has changed his lifestyle for the better. He is eating well and taking his medication. His GFR has improved and he has not needed to start dialysis yet. It was a rough few months, but I can happily say he will enjoy another summer boating in havasu. He realized he can still enjoy what he wants to do, just with modifications. He finally got a boat slip at the marina so he will have a lot easier time on the water now after the 5+ year waitlist he was on. I was pretty scared on losing my dad. I already care take my grandma full time and she’s 86 so you never know what happens day to day, but dealing with them both, was a bit much.

I appreciate everyone’s comments and insight on here as always. It was very helpful as I was talking to him about having the surgery and at least trying dialysis. His attitude towards life is much better now and he feels a lot better.

 

[RiverDave]

I get the lake thing but can’t figure out why hunting would matter?

 

[Socalx09]

I get the lake thing but can’t figure out why hunting would matter?

He goes on deer hunting trips for a number of days. So he would not be able to do those trips without access to dialysis.

 

[RiverDave]

He goes on deer hunting trips for a number of days. So he would not be able to do those trips without access to dialysis.

Isn’t dialysis like once a week type thing?

 

[monkeyswrench]

Isn’t dialysis like once a week type thing?

Depending on the percentage of kidney function, 3 days a week is what I had seen with one of my friends. 5-6 days a week though isn't super rare from what I read at the time. That was 10 years ago or more, maybe the equipment and treatments have gotten better though.

 

[grumpy88]

Welcome back and im glad everbody is fill doing good . I hope your Dad has a great summer !

 

[Times Like These]

Been there, did that. First round of dialysis was called Peritoneal dialysis, they put a catheter in your abdomen where a solution goes in the peritoneal cavity and miraculously cleans your blood, even though the fluid never touches your blood. Benefits are you do it at home at night, but it’s every night for 8-10 hours. No swimming or baths, shower ok but have to cover the catheter. Did this for 1.5 years, and with a boat and home in Havusu, it sucked. I had a transplant and after 3 years my Body rejected it, Got sick of Havasu, sold house after 20 years and bought a yacht where your not tempted to go in the ocean because the water here is always freezing ass cold.

Back on dialysis, 2nd time I did hemo dialysis, in a center every MWF For 3-5 hours a day. I had a fistula put in my arm, it’s the safest way to access your blood, but the have to put 2 big ass needles in your arm every treatment. Going in the lake was ok, but you can never miss dialysis so I would arrange for treatment at the Havasu dialysis center. You got to plan months in advance since getting an open chair is very hard. After 3 years got my 2nd transplant On Valentine’s Day last year. Been 1 year and everything is going good. Only bad thing is being on high doses of immune suppression, I have to be very careful not to get Covid.

Best advice is for him to get a transplant. Every one he knows should get tested to see if they can donate. Do whatever it take, social media, sign on your cars, everything, what’re ever it takes to find a donor. If he waits for a deceased donor, the average wait is 10 years in LA/Orange county.

good luck.

 

[Ziggy]

@Socalx09
Glad to hear your dad has taken steps towards improving life & I hope G'ma is doing well also. Congrats on your boyfriend progression too

 

[gqchris]

I haven’t been on here in months due to all the family things going on. I was in full time caretaker mode. Plus- I ended up moving in with my boyfriend so dealing with a new move plus health scares was a lot.

My dad ended up having the surgery after all his tough guy talk. He was pretty scared going into it, but he got the port in his arm. He has changed his lifestyle for the better. He is eating well and taking his medication. His GFR has improved and he has not needed to start dialysis yet. It was a rough few months, but I can happily say he will enjoy another summer boating in havasu. He realized he can still enjoy what he wants to do, just with modifications. He finally got a boat slip at the marina so he will have a lot easier time on the water now after the 5+ year waitlist he was on. I was pretty scared on losing my dad. I already care take my grandma full time and she’s 86 so you never know what happens day to day, but dealing with them both, was a bit much.

I appreciate everyone’s comments and insight on here as always. It was very helpful as I was talking to him about having the surgery and at least trying dialysis. His attitude towards life is much better now and he feels a lot better.

Awesome update and I miss seeing your posts on here!

I bet he was just in shock (for good reasons) for the news in the beginning and now he realizes with a little bit of adapting, he can manage the trips he loves!

 

[Socalx09]

Depending on the percentage of kidney function, 3 days a week is what I had seen with one of my friends. 5-6 days a week though isn't super rare from what I read at the time. That was 10 years ago or more, maybe the equipment and treatments have gotten better though.

Yep, my dad will be the 3 days a week, or at home which will be daily. So long trips aren’t really easy to do for him, or a lot of planning will need to be done

 

[Socalx09]

Welcome back and im glad everbody is fill doing good . I hope your Dad has a great summer !

@Socalx09
Glad to hear your dad has taken steps towards improving life & I hope G'ma is doing well also. Congrats on your boyfriend progression too

Awesome update and I miss seeing your posts on here!

I bet he was just in shock (for good reasons) for the news in the beginning and now he realizes with a little bit of adapting, he can manage the trips he loves!

Thank you guys! It definitely was relieving when he finally accepted to go in for his surgery. He is very stubborn and it was hard for me to deal with. Very glad I get to spend more time with him. He’s accepting the fact that modifications to his life don’t have to be so bad.

 

[Socalx09]

Been there, did that. First round of dialysis was called Peritoneal dialysis, they put a catheter in your abdomen where a solution goes in the peritoneal cavity and miraculously cleans your blood, even though the fluid never touches your blood. Benefits are you do it at home at night, but it’s every night for 8-10 hours. No swimming or baths, shower ok but have to cover the catheter. Did this for 1.5 years, and with a boat and home in Havusu, it sucked. I had a transplant and after 3 years my Body rejected it, Got sick of Havasu, sold house after 20 years and bought a yacht where your not tempted to go in the ocean because the water here is always freezing ass cold.

Back on dialysis, 2nd time I did hemo dialysis, in a center every MWF For 3-5 hours a day. I had a fistula put in my arm, it’s the safest way to access your blood, but the have to put 2 big ass needles in your arm every treatment. Going in the lake was ok, but you can never miss dialysis so I would arrange for treatment at the Havasu dialysis center. You got to plan months in advance since getting an open chair is very hard. After 3 years got my 2nd transplant On Valentine’s Day last year. Been 1 year and everything is going good. Only bad thing is being on high doses of immune suppression, I have to be very careful not to get Covid.

Best advice is for him to get a transplant. Every one he knows should get tested to see if they can donate. Do whatever it take, social media, sign on your cars, everything, what’re ever it takes to find a donor. If he waits for a deceased donor, the average wait is 10 years in LA/Orange county.

good luck.

I really appreciate you sharing your experiences. Especially with the wait times at the dialysis center incase he is in havasu at that time. Very happy to hear your 2nd transplant is going well.

My dad just loves being in havasu and on his boat. So it was really difficult to accept that he has to change his swimming habits. He has the port in his left arm so he needs to not get that wet.

Currently, they told him he is not a great candidate for a transplant. He needs to lose a lot more weight and quit his cigar habit. He is making changes to do that. He’s lost probably 25lbs since November. He won’t consider taking a transplant from me, but I’m immune compromised already.