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[viamar1]

Hi.I was told I had stage 4 CKD 3 years ago.My function is at 17.Will go next week for more blood work.Then have to get the access port put in.They are also worried because I have 3 times more protein in my blood than average.

[viamar1]

Sorry.Meant urine on the protein.

[PeaB4YouGo in reply to viamar1]

Protein in your urine?

[viamar1 in reply to PeaB4YouGo]

Yes.It is leaking from a scar on my kidneys into my urine.

[PeaB4YouGo]

Talk to your doctors about getting a fistula or graft, whichever works for you. The sooner you do this, the sooner you'll get the central line catheter removed, and the sooner you move away from a HUGE source of infection (and, the happier the dialysis center staff will be). I never had one, and I'm grateful.

I watch the folks with central lines and, while they get in and out of the dialysis clinic faster, they take longer to prep because everyone involved needs full PPEs to hook them to their machines. With me and my working fistula, my nurse wears and gown, gloves and mask, but I don't need to "gown up" as well. The disadvantage, and it's a really small item, is that I have to spend 15 minutes holding pressure on a gauze pad on my access until I quit bleeding. At the end of it all, you can tell the folks who have fistulas by the number of arms held high while waiting for their pressure bandages. LOL

Seriously, get your fistula/graft ASAP. They take a while to "mature", so you'll be using that central line for a while, but life gets easier when they can start using your arm, instead.

[viamar1 in reply to PeaB4YouGo]

I haven't had a central line catheter put in.I go the 30th to put the access port in.

[PeaB4YouGo in reply to viamar1]

My last paragraph is an important point. You will not be able to use your fistula/graft for the first few months after it is "installed". This is because it is "maturing" and will not provide the necessary flow rates and pressures required for dialysis right away. During that time, you'll need that central line.

I'm probably going to kick myself, but, are you planning to start HEMODIALYSIS, or is your access for Peritoneal Dialysis, in which case, disregard everything I've said. LOLOL

[viamar1 in reply to PeaB4YouGo]

I'm not sure

[Bassetmommer NKF Ambassador]

not sure....at this point? One goes in your belly....peritoneal and the other goes in your arm...hemodialysis. When you do not plan right, you end up in the hospital with a direct catheter, which is not great. Too many issues with infection. If it is an arm fistula, go now and see the surgeon. I waited, thinking I have more time, and that was almost four months before they started me. I had nothing but issues because it was not "ripe". I was self-cannulating by the fifth month with little to known issues with the site.

[viamar1 in reply to Bassetmommer]

I go the 30th of this month

[viamar1]

Mine is going in my arm.Sorry.Did not know the medical terms.

[Dahlialoveblue67]

My husband’s egfr is 10 and creatine is 5.4. We are just going for a consult to place a catheter for home PD dialysis. He does not have excess protein though. I understand it is not the same, but his nephrologist has determined it is time to get a tube placed . But we are meeting with someone first to go over the process and explain what PD is and what it involves. We already went to a four hour training when his GFR was at 20 3 years ago.

Please call your nephrologist and ask for someone to help you understand what each decision means. Regardless of the type, you will become the expert for your own care. The more you know the better to relieve the fear.

People have had success with all types and also have had to switch treatments for various reasons.

[viamar1 in reply to Dahlialoveblue67]

Thank you for the info.

[ShyeLoverDoctor in reply to Dahlialoveblue67]

A few things. I’ve been dealing with all this for several years now.

You will end up on hemodialysis from PD because eventually your Peritoneal membrane wears out and can’t be used. But I know that can take years! It so individual.

I have heard a lot of positive things about PD, I personally said I wanted up right until the night before my consult with the surgeon, when I realized I just didn’t want the responsibility of keeping it sterile, having two cats, and dealing with hiding it. I also hated the ton of supplies that come with it, since I have a small house. But they do say you have more energy, and you can do it while you sleep and have your days free. Then again, it’s every night, and you only have to do hemo (in center) three days a week. Or home hemo four days, usually.

I also want to say, I pressed my surgeon, and my dialysis technician really hard and said what would you do if you had it. I had already truly made my decision but then, but I wanted to know what they would choose. They both said PD.

[horsie63]

I did PD till it failed and put me in the hospital. They had to put a CVC (goes into your carotid and sits on your chest) that's where the infection can get into your heart. I had mine for 8 months due to my fistula never working and then got an AVGraft which works beautifully. Fistulas can take 4 or more months to "mature" and be usable. My graft because of the type was usable in a month.

[viamar1 in reply to horsie63]

Thank you for telling me this

[ShyeLoverDoctor in reply to horsie63]

My surgeon & my nephrologist both said fistulas take 3 months to heal and PD catheters take 1 month. Yes that’s a generalization. However my nephrologist had 42 years of experience and the surgeon did as well, in fact he had “graduated” to doing spinal surgeries and agreed to do my fistula as a favor because he knew my nephrologist. Yes - if you have bad veins, that’ s a different story, but 3 months is standard.

[viamar1]

I am 62.Will not apply for transplant.Have been looking at different places to learn more.Will talk to doctor again the 25th.Do the access the 30th

[ShyeLoverDoctor]

I’m sorry to hear this. You are eligible to be on the transplant list right now. You don’t have to have started dialysis yet, If you have any desire to get a transplant and might be eligible, now is the time to get moving. The longer you wait the sicker you get, the harder it is.

[viamar1 in reply to ShyeLoverDoctor]

Not trying to be a hero.But I would rather someone younger with children to get it

[ShyeLoverDoctor in reply to viamar1]

Let me explain something I’m suspect you don’t know. Deceased donor kidneys are not all the same. They have a rating called the KDPI, kidney donor profile index. This is a score based on the donor age, if they engaged in risky behavior, did they have a history of drug use, what they died of, etc. The lower the score the better the kidney. It means how long the donor kidney is expected to last on average.

When you sign up for transplant, there are options you choose. You do this at the beginning before you go on the list. You have to initial each choice.

You can choose to accept a kidney from someone who had hepatitis C for example. That cuts your wait time by a lot, and hep C can be cured in a week to a month for a person who gets a transplant like that. Hep C kidneys are usually excellent otherwise because they tend to be from younger people. At first I thought, no way, I don’t want a diseased kidney. But when they explained there’s a new process where you can be cured in a week or only a month, I changed my mind and said I’d take one.

You can choose what KDPI score you are willing to take. Depending, they won’t even call you for a high KDPI you’re not going to want. You can choose to accept a kidney with a KDPI of 75 ( think that’s the number) or above. Those are expected to last about 5 years.

The transplant nephrologist told me, We recommend you do not choose to accept a high KDPI kidney, because you are young and have a lot of years left. So I did not initial that box. Someone with children is very likely NOT going to take a high KDPI kidney. They’re going to wait for a better one to come along. You, however, at age 62, would be a good candidate for a high KDPI kidney to at least avoid dialysis for a few years.

They think very carefully about who they are going to offer which kidney to. Children will always be at the top of the list. People under 40 are given priority as well.

I was “”young” at age 53. Lots of people my age would wait for a 30- 40 score KDPI kidney to come along.

When the organ procurement team calls you with a deceased donor kidney offer, it is your choice to accept that kidney or not. If you choose to pass on it, you do not lose your position on the list. They will give you details about the kidney (no, not revealing anything about the donor!)

The kidney they offered to me came from someone who had Covid. That concerned me a bit, but they’ve been doing kidney transplants from people with Covid for years now. The donor also had an acute kidney injury in their last days, but the doctors didn’t think that would be a problem. It had a KDPI of 50. I was miserable on dialysis (some people’s body reacts to it differently) so I said Yes. I want it! Most people who get a KDPI kidney of 50, it stops working after 8 years.

As I said I suspect you didn’t know this. There’s a lot to learn about transplants! I hope you will research this and give it some thought. Having said that, Yes, you can certainly chose not to get a transplant so someone younger gets it. However, a high KDPI might be something you want to consider, given what I just explained.

I have chosen not to have children. I don’t feel my life is worth any less than someone who does have children. Maybe they’re a rotten parent. I don’t know. Maybe someone else is going to be someone who does not keep every doctor appointment and take their medicine exactly as prescribed the way I do.

[Darlenia in reply to viamar1]

The decision which way to go - die naturally, go on dialysis, go on transplant - are choices that are only yours to make. Simply make sure you're well informed on every one of them. Regarding kidney transplants, is a logical process is involved involved regarding the recipients overall health, longevity, and more. Generally speaking, younger people receive kidneys from younger donors and older folks receive kidneys from older folks and so on - it's rare for a 30 year old, for example, to be given a kidney from a 60 year old. Also, kidneys with conditions of various sorts and formerly considered not suitable for anyone largely wind up going to seniors. My hubby is an older man. He was offered a kidney from an older man found deceased for a time (a problem in itself) and having two conditions - one was fungal in nature requiring treatment for the recipient. He gratefully accepted, knowing that his life was largely lived whereas others still had decades to go. My husband is doing very well today. However, I support people making their own decisions - even when they're not the ones I would make - especially when they've evaluated everything to the full extent.

[viamar1 in reply to Darlenia]

My problem is servere COPD.Doctors are hesitent to put me to sleep.When I had to do an arteriogram,they put the strips on me incase they had to revive me.

[Darlenia in reply to viamar1]

Oh my...that does give one perspective and direction in itself! Sending supportive thoughts your way...may new treatments and therapies come your way (and for all of us) sooner than later.

[viamar1 in reply to Darlenia]

Maybe soon someone can find a way to make CKD easier

[Savreen1]

hi can u share plz how you increase gfr??? Thanks

[viamar1]

Mine is one,I have a bladder and a half.So it is harder for me to know it is full and fluid goes back into my kidneys.Two,I held off from going to the bathroom so much.

[viamar1]

I will inveastigate it more.Never knew all of this

[viamar1]

What is everybodies BUN level .Mine is 41