Tap water PD solution pilot study information

[Jayhawker]

Another person with Stage V CKD but not yet on dialysis shared this link with me. I thought I’d pass it along to the group.

I’ve been watching the research focused on the development of a tap water PD dialysis solution delivery system for a few years. For me tap water PD solution delivery will be a game changer! Fewer boxes of supplies each month and easier home implementation are most appealing to me.

Here’s the link:

baxter.com/baxter-newsroom/...

I’d be interested to hear what others think about this.

Jayhawker

[Bassetmommer]

Hey Jayhawker,Very interesting and a great idea. I just wish they would come up with something that was not glucose based since so many people have diabetes. I have been hearing horror stories of weight gain and uncontrollable glucose with PD. Scares me, since weight is an issue and I am working t lose weight now to make the transplant requirement. Seems counter productive doesn't it?

[Jayhawker in reply to Bassetmommer]

Yes, some people do report significant weight gain on PD; others don’t. I’d suspect that may be in part due to the amount of glucose in the fluid they use…They may use fluid with a low glucose level. I gather that those with minimal fluid retention are prescribed fluid with low glucose levels.

I’m expecting that I’ll need to factor the glucose absorbed by my body as part of my daily carb allotment. This means I may be on essentially a low carb diet when I start PD. Some people attribute their weight gain on PD as being primarily due to a change in their eating habits…

Clearly this is an issue I’ll have to get on top of when I have to start PD.

Jayhawker

[Jayhawker in reply to Bassetmommer]

Here’s some information I’ve found related to your post:

davita.com/diet-nutrition/a...

[RhenDutchess123]

This ...of course...would be wonderful !!I do however worry about the sterilization process. Our tap water concerns me just in normal use..the calcium deposits on our shower keeps me covering my exit site with a water proof bandage..not sure about using it in my peritoneum...It will be interesting to follow this...such a space saver !!

I would however...prefer to see the research money spent on the implantable artificial kidney ...THAT would be a game changer !! In fact it would be Game Over...

[Jayhawker in reply to RhenDutchess123]

I definitely would prefer to see dollars spent on the artificial kidney implant as well. That would be the ultimate game changer for CKD!

Jayhawker

[Darlenia]

Hi Jayhawker! I believe this will likely happen - possibly sooner than later. If it happens, it's a huge win-win. Baxter will no longer have to manufacture, warehouse, and transport the dialysates and accompanying supplies to homes and center. This will reduce their vehicle fleet, their employees, their storage facilities and more, driving up profits. At the same time, patients won't need to store dozens of boxes, carry heavy bags around, and more. So that convenience factor will rank high for patients. However, the tap water goes into a special machine kept in the patient's residence which processes the tap water and formulates the dialysate a person will use. So there is that consideration. But many would accept the addition of that machine (I saw it on pictures some time ago) versus 50 boxes of supplies and solutions any day, freeing up floorspace and more. At the same time, in its effort to simplify matters for its patients, Baxter is in competition with the implantable kidney dialysis unit which is rolling along smoothly at last. It has federal support - our gov't is tired of the exceptionally high bills it currently pays out to dialysis centers, etc. If the implantable artificial kidney is successful, it will be transformational in the kidney world, driving out business companies peddling old technologies. And benefitting thousands, if not millions, of people worldwide sitting and spinning on transplant lists. I sure hope I'm around to see this happen.

[RhenDutchess123 in reply to Darlenia]

Me too Darlenia...The technology is there and has been for years...Now we just need the will ..but Big Pharma is not our Friend ...

[Jayhawker in reply to Darlenia]

Darlenia,

I agree completely with your post. In my case I’d be delighted to have the tap water purifier in my home as compared with the endless boxes arriving once a month…

However, I’ve been watching the artificial kidney implant device research for ten years. I’ve said all along that I’d opt for this implant rather than a kidney transplant if this implant was an option. Why? It would give me an eGFR of approximately 30. It requires no anti rejection meds which have their own problems. And this renal function would be stable for the rest of my life.

Frankly, I’d be delighted with the artificial kidney implant option! Let’s hope it’s available within the next few years!

Jayhawker

[RhenDutchess123 in reply to Jayhawker]

And no shortages...they could whip those out for anybody who wanted one...no survivors guilt either...

[KidneyCoach NKF Ambassador in reply to RhenDutchess123]

Not all who wanted one would qualify. Lots to consider like cardiac and clotting factors etc.

[Jayhawker in reply to KidneyCoach]

It’s the same with transplants; not all who want them qualify and even of those who do qualify, not all receive a donor kidney. This is why it’s so important, in my opinion, thst we’re each able to be a peace with the dialysis treatment option. Even those who are blessed to receive a kidney will eventually likely need dialysis.

Jayhawker

[RhenDutchess123 in reply to KidneyCoach]

I guess I need to change my statement : Anybody who wanted one and was cleared by their Doctors could have one...You are correct Kidney Coach

[Darlenia in reply to Jayhawker]

We, too, would opt for the implantable mechanical kidney over a human kidney. My hubby received his transplant in late June and it's been a very rocky time for us. The transplant meds, ureter leaks, etc. have really affected us. While a mechanical kidney may not produce hormones, etc, we would be happy to take supplementation for that over what we have endured so far. While we are grateful for the transplant, we were unprepared for the possible complications that can occur. Indeed, there are transplant "fix-it" beds in the hospital we totally didn't see until my hubby wound up in them. And we are scheduled for more procedures. Keep on researching, Jayhawker. The more you know, the more prepared and centered you will be. Blessings.

[Jayhawker in reply to Darlenia]

I appreciate you sharing this with regard to your husband’s transplant recovery status. Frankly, I continue to have second thoughts about getting a transplant specifically due to these possible complications along with what the anti rejection meds do to our bodies. All of this for a deceased donor kidney that I’m told will on average last 7-8 years. Of course the last year in the life of the donor kidney may not be a lot different than what I’m experiencing now… So, I debate this situation with myself some even as I am waitlisted and getting monthly renal panels run… Ultimately I’ve told myself to leave all options on the table and see what actually happens. But transplants are certainly not always the best option.

Jayhawker

[RhenDutchess123 in reply to Darlenia]

I have been on PD for 6 month...and it has become so routine and I am so thankful for it...I feel good !..but..as you would expect my Clinic still encourages me to get on the transplant list...and I understand why they advocate for this..but if i can stay healthy and have good quality of Life on PD I am in no hurry to change anything..especially when I hear of the troubles people have post transplant and the constant testing and waiting....which I dont have now...and feel like I am enjoying whatever time I have on this Earth

I find myself asking myself..Why would I change what I am doing ?

[Darlenia in reply to RhenDutchess123]

Honestly, I think a kidney transplant is the best choice for most everyone that qualifies. You're truly not tethered to machines and the itching and restless legs go away, and more. So the quality of life in that regard is improved. It's just that everyone believes that this will return you to "normal", particularly when hearing about those who experience a rather uneventful recuperation. But issues do often develop. My husband's body went into a-fib dealing with a new organ, a urine leak developed, various drug reactions set in and more. The medicine, besides immune suppression, creates hand tremors for many, including my hubby, so it's hard for him to write work with figures, record vitals, etc. Hubby has lost a lot of weight which he hasn't gained back yet. Some skate through a transplant, others don't. Someone mentioned either here or elsewhere that it's best to view a kidney transplant as another form of "treatment," not a cure. In other words, go into it with eyes wide open, knowing the issues. We were quite blindsided when, wham, things happened. We're hopeful, however, that things will turn the corner soon. When that happens, I can then see where life will be great. I truly hope your path forward is smooth, not rocky, and rewarding.

[Jayhawker in reply to Darlenia]

I’ve tried and will continue to try to research all aspects of the transplant treatment option. But to be honest, it’s pretty difficult to get much of the less than positive (smooth sailing following transplant.) information. I can’t help but wonder what the medical community is hiding? Why the lack of transparency? How can patients make truly informed decisions without all the static’s—all the information; the good, the bad, snd the ugly?

Jayhawker

[Darlenia in reply to Jayhawker]

I don't know the answer to that. We've told our transplant team that people should know upfront, not afterwards, what the complications may be. My hubby relied on me to get things done, to give him information, and more. And I had pride in how I did that - pushing him in a direction to get a kidney expeditiously, letting him know the benefits, etc. (His nephrologist pushed him into having a transplant too.) When we got the call, everyone was euphoric, then we all crashed when stuff happened. I now feel that I really failed and let him down in this area. I do have to reiterate, though, that his situation is a bit unusual in that urine leaks are rare (around 2%) and so on. But we didn't even know what was gushing out of his incision! (It's still being worked on today.) Or that the lymphatic system could pitch a fit. (His testicles got super large then went back to normal). Or that the cardiac system might go into a-fib while it tried to figure out what to do with this new organ. (That's also fixed.) So people should know what can happen and prepare themselves accordingly. Indeed, transplants are treatments, not cures. Yet it's important to be mindful that most of the complications I've mentioned truly can be remedied. So I still think, if we can get things completely straightened out, that a life with a transplant will be better than being on dialysis. If not, I'll let you know.

[Jayhawker in reply to Darlenia]

For me it’s a numbers game. Likelihood of each complication; duration of time to resolve the complication; procedure or medications associated with these resolutions; complications associated with each; cost; and time.

If the deceased donor kidney for a person in my age range lasts around 8 years on average. .. The last year will be spent addressing deterioration in function. If the first two years are spent resolving post transplant issues…. Well, I’m sure you’re following my thinking. All this and the complications associated with anti-rejection meds??? It certainly does cause some indecision for me…

Jayhawker

[Darlenia in reply to Jayhawker]

Oh Jayhawker. Don't worry too much. You're located near some great transplant centers. So they have a much better grasp on research and development - and will have better outcomes than smaller centers. I've also become aware that the longevity of donor kidneys has increased a lot over the past few years - superior matching is making a huge difference. Those receiving a kidney today are likely matched far better than those 8 or 10 years ago - I very rarely hear of anyone experiencing rejection that received one within the past few years. And even with old technology, some are living 30 years with a donor kidney. I also suspect the complications my husband experienced will diminish for others as better scans and techniques are put into place. Another important thing to remember is that transplant centers will offer detailed info about the donor kidney (viruses, time spent outside the body, match percentage, etc.) and ask you to accept/reject it. If you reject, there are no hard feelings , you will continue to receive offers. One man reportedly rejected 4 kidneys before accepting one. A part of us thinks we probably should have passed on this one because of the leak issue - our donated kidney was quite "old" etc. (My hubby was offered/accepted a better kidney earlier which unfortunately couldn't be implanted because of a uti.) And then sometimes fate happens - hubby just happened to be the chosen one to go through the wringer. The majority of cases wind up going well, we believe we'll get there too. So keeping on, keeping on. With this little exchange, you know so much more than I ever did. So you'll be able to hopscotch around any issues, if they happen, armed with more info that we had. It's really hard for you or the kidney to "expire" as those transplant teams are hyper skilled and hyper knowledgeable. I see good outcomes for you!

[RhenDutchess123 in reply to Darlenia]

That truly is my concern...will I be the one who flys through a transplant with very little trouble...or will I be the one who has many hills to climb..I have never experience much itching and never have had restless leg or most of the kidney failure symptoms other than the fatigue in my 23 year Kidney Journey...and I just feel that as long as I feel good...go with what I have..instead of looking over other horizons...but that is certainly just my opinion...and I too like to leave my options open and continue to gather knowledge

[Darlenia in reply to RhenDutchess123]

That's a wise approach!

[horsie63 in reply to Darlenia]

Not to be a nay sayer but I'm sure it comes down to who has the best lobbyists. Kind of like what is happening with insulin prices.