Here is a photo of machine and supplies for two weeks.

[DAF1234]

Supplies for two weeks.

[Jayhawker]

Will they always deliver two weeks of supplies at one time or will this increase to them delivering four weeks of supplies?

I'm thinking I'll use a few portable screens to "hide" my supplies out of view. That may help it feel less like I'm living in a hospital ward rather than a home...

Marj

[DAF1234 in reply to Jayhawker]

I agree with you. I’m trying hard not to have my room look like a hospital. I was able to get this shipment into one closet and the closet is now full. So I may opt to have delivery every two weeks instead of four.

[Gotthecall_123 in reply to DAF1234]

Must of been a big closet😬

[DAF1234 in reply to Gotthecall_123]

No actually, average but I wish it was. 😀

[Jayhawker in reply to DAF1234]

I actually wonde if I might prefer delivery every two weeks too. I could store everything in my master bedroom then. Thus my thoughts about screens to partition these boxes off so they aren't in sight all the time.

I've also got a finished basement that is totally unfurnished so lots of storage space there. I put a chairlift in when I moved to this house last summer specifically so I can get safely up and down stairs. I could also put the fluid bags on my lap and ride up the stairs with them. So I've got options.

I'm sure the nurse will guide this decision.

Marj

[DAF1234 in reply to Jayhawker]

This would be a great Idea. The only downside is these boxes are quite heavy. Maybe the delivery service could bring them down to the basement for you. As you said when the time comes you will have plenty of options. As for the machine I haven’t started it yet we moved start date to Thursday, tomorrow.

[Jayhawker in reply to DAF1234]

Yeah, they would have to move the boxes downstairs for me. I'd have to bring one bag of fluid upstairs st a time making several trips a day. With the chairlift that would be doable. But the nurse will guide all of this.

Did you dialysis today manually? Also, will tomorrow be your first time using the cycler?

I'm surprised and impressed by his quickly this training is going. That's likely good news too.

Marj.

[DAF1234 in reply to Jayhawker]

Yes today was one manual. We left the 1.5 solution in for 3 hours. Nurse came by my house this time. Tomorrow we will start on the machine and I will go to the dialysis center.

[Jayhawker in reply to DAF1234]

You're doing great!

Marj

[Gotthecall_123 in reply to Jayhawker]

Hey Jay been a crazy month the roof collapsed where i was living had to stay in a motel for over 3 weeks finally found a new place had to move again just moved in February 😬 finally settled in🙏 How have you been? Hows your dialyses going💪🙏😝

[Jayhawker in reply to Gotthecall_123]

Glad to hear you're resettled; sounds like it's been hectic for you.

I'm still not on dialysis. In fact, my creatinine has improved some. My GFR is now consistently 15-16 so I'm now in low Stage IV. I had the final appointment with my soon to be former nephrologist the first Friday of February. During that appointment I saw a different nephrologist who works in the same practice. That nephrologist thought it might be 2-3 years before my kidneys deteriorate sufficiently to need dialysis. He also thinks that the reason my kidneys have shown some improvement is because my blood pressure isn't running so low right now. This nephrologist seemed to have s better handle on my data. Unfortunately he only sees patients who are on dialysis.

So, I'm still patiently waiting fir my first appointment with my new nephrologist on Thursday, May 30th. But I'm feeling and functioning better most days. I believe that a better anemia plan would make a big difference for me. I'll talk with my new nephrologist about this when I see him.

So, I may be one of these people who find myself in renal failure for 5-6 years before I start dialysis.

Thanks for asking.

Marj

[Gotthecall_123 in reply to Jayhawker]

Well that sounds good and bad keep up oth what your doing and try to improve your diet to a kidney friendly one im comming up on 1 year post transplant doing pretty good im working hard on ky diet and walking alot with my dog Frank try to do a bit of weight training but im still stuggeling with my energy hang in their jay talk soon😝

[Gotthecall_123]

Hi its a lot eh i used to get 1 month of supplies at a time it was delibered on a pallet😬

[Carillon]

I will have to rent a storage room somewhere and bring boxes as needed. I refuse to fill my house with all of this. And I am amazed that that the state of dialysis remains so primitive and sees no advancement to help us live better. Where are the Einsteins in this field? Feel victimized!!

[Gotthecall_123 in reply to Carillon]

It realy isn’t that much I was in a 1 bedroom apt I managed and also the going back and forth will ware I out 💪🙏😛

[Gotthecall_123]

Look about wright after a while it was a work out moving and disposing of the shit😬

[Chicken_Jorge]

To each their own, but please understand that the Dialysis Industry is in it it to make money. You have to monitor your health and while nephrologist make recommendations they too are in bed with suppliers. I found that most of the supplies I never needed and was duplications. Know your levels, and at what levels you feel alive. Then stay there.

[Jayhawker in reply to Chicken_Jorge]

My father was on home hemodialysis nearly 35 years ago. He and my mother were on a very tight budget. I still remember how my mom tracked everything to be sure they didn't receive duplicate supplies; they had to pay for 20% of the cost for all dad's supplies. She even took Kleenex and so forth home from the hospital because, "We've paid for this at prices much higher then the store would charge. They won't let us bring our own. But we can certainly take home the unused supplies we've bought."

Prices have gone up significantly in the interim 35 years. And, yes, I've already run into an extreme conflict of interest with the nephrologistst I'm leaving. He would only prescribe in center HD dialysis for me solely because that's what HE does. He then said that because that's all he does, all of his patients are on HD dialysis. Had he said that he specializes in HD dialysis but would refer me to a colleague who would facilitate in home dialysis options, that would have been fine. But that's not what he said and it's not what he does. Had I not known about the other treatment options I would have left that appointment thinking that I had no other option than in center HD dialysis.

Further, he was also going to dictate the dialysis clinic I would use. Again, he has some additional relationship with that clinic specifically. So yet another conflict of interest.

This is without doubt frustrating. But I'm convinced that there are many professional and patient-centered nephrologist out there. So I'm voting with my feet, so to speak, and going to a different nephrologist. That won't solve the big money the profit dialysis companies are making off of all of this; but it will improve the situation some.

And finally, I remind myself that I'm ultimately the one in charge of my renal care. I'll make the final decisions as to whether I continue care. So it's up to me to make the decision that is in my own best interest.

I do understand your frustration regarding all of this. And, I, too, have been surprised how little improvement or change has occurred in renal care for persons with CKD during the interim 35 years since my father was on dialysis. But it is what it is... Those who are fortunate enough to qualify for a transplant will benefit from the major advances that have occurred over the past 35 years.

Marj