GFR dropping

[Jmccool]

My husband GFR has dropped from 12.5 to 10.2 in 3 months. He does not have a port or fistula in place. He thinks he can improve his # by eating right like all vegetables. His kidney doc called him today to move up the surgery for it and he told them he needs a few more weeks to get better blood results. I don’t know what to do... can anyone give me advise? Thank you

[Bassetmommer NKF Ambassador]

Hi JMccool,

Yes to the veggies, it MAY help. But at this point, he should get prepared with the fistula in the arm. The last thing he wants is a emergency situation where they have to dialysis through a central venous catheter which goes in the chest. So it may take a few weeks for him to have the surgery and have it calm down enough to be used. So it is a good idea to be prepared.

However, if he is feeling good enough and can stay off dialysis, I would too. But I would have the surgery.

If he hasn't seen a dietician, he should immediately. Things will change again when he is on dialysis. But for now, cut down on the protein and read up on what is good. How is is potassium and phosphorous?

check out davita.com if you haven't already.

Good luck and let us know how it goes.

[Jmccool in reply to Bassetmommer]

Thanks for your response his Creatine is 5.86 phosphorus is 4.8, Potassium is 4.5 and his Protein/Creatinine ratio urine is 2,273. His A1c just came back diabetic. He was never diabetic before. He feels sick to his stomach, peeing a lot, couldn’t catch his breath Saturday night and extremely tired all the time. I’m so scared for our family.

[Bassetmommer NKF Ambassador in reply to Jmccool]

he needs to face the fact that dialysis will save his life. I did not pull down and see that we have gone over this before. I am so sorry, but really it is up to him to do the surgery and live.

[Hidden]

Have him prepare an Advance Directive. It appears that he is in denial and having an AD will protect his rights and wishes. It would also be a good time to update his will. You can't force these things on him so you need to hope for the best but plan for the worst.

[Jmccool in reply to Hidden]

I know we are updating all wills this Friday. He wants to live but thinks there is a miracle pill or food that’s going to save him. 😔😔

[Hidden in reply to Jmccool]

We all wish the same thing but at this time there isn't one. Has his nehrologist explained to both of you what can happen when he gets to ESRD and is not prepared fot it?

If he won't ask at the next appointment then you should.

[Jmccool in reply to Hidden]

Pretty much just told us he will die without dialysis. And his body will shut down.

[Hidden in reply to Jmccool]

If he continues to refuse life-saving treatment then all you can do is to prepare yourself and the family for that inevitability.

[Pappy58]

Check out the group on Facebook called Natural Kidney Journey. They have a healthy protocol outlined which if followed has helped numerous people avoid dialysis and even get off dialysis. It takes a lot of work and time but I have confidence in the food plan. Please check it out.

[lowraind in reply to Pappy58]

I was going to suggest the same. They have a very strict protocol, but they do seem to have helped many people.

[Runningman1963]

Get the fistula , because you need to give it time to get strong when time comes to use it . It's the first step on the road to getting better.

[BMC46]

It’s ostrich management. If he waits too long they have to a port in your chest. The fistula is the best option. It takes 3-4 months to be ready for use. Eat healthily but get the fistula

[psj1102]

Hello,

I was new to the forum a few weeks back. My husband is stubborn and doesnt't do his best to help his situation. He is at 20 GFR, and will eat foods he knows he shouldn't and doesnt exercise as much. Initially he said he didn't want to do dialysis. he is slowly coming around, however he too is in denial. I was given some great advice by Mr. Kidney and others. You can't make someone do what they need to do to live, it has to be up to them. You will drive yourself crazy and then your no good to anyone. As others have said and what I have done the past few weeks is to make sure his affairs are in order. Should he want to change his mind, I just pray that its not to late. Our next appt with the nephrologist is at the end of the month, so we will see. I will pray for you and your family as your story hits close to home.

[Jmccool in reply to psj1102]

Thank you it’s truly a very scary hard struggle. He thinks he can cure himself and he’s wrong. I am getting all of our wills updated and struggling with what the future holds. I will pray for you it all we can do at this point. 😔

[rabbit01]

Sorry to hear that you are both going through this. I was diagnosed 5 years ago at 18%. My eGFR is currently 8% and I too have not yet done anything about having the pipe work fitted so that I can do PD. I keep putting it off so I can relate entirely to how your husband feels. It's a horrible thought that your body has let you down and you now need to rely on machines and medication and other people to keep you alive. I am sure that he really knows that whatever diet changes he makes now is not going to make a material difference at his stage. Dialysis is not going to be easy but there are loads of people on here who do it and are truly inspirational in what they do. I am in the process of arranging for the operation I need and I would urge your husband to do the same.

[ILMA54]

I went from 15 to 11 in three months. At that point, my doctor had me go to the dialysis clinic for an orientation meeting and to the surgeon for a surgery consult.

The dialysis orientation helped me wrap my head around the implications of dialysis. Fortunately, by eating well, cutting out caffeine and soda, reducing salt intake, and drinking far more water, I was able to raise my GFR backup to 15, where it has remained stable for the last several months. Unfortunately, I am unable to decrease the amount of protein I eat, because I am on the edge of malnutrition Albumin = 3.3-3.4. For that reason, I have actually had to increase protein to 1.0 g/kg body weight.

My blood levels were all in the middle of the normal range for potassium, phosphorus, and some of the other minerals. Also, I actually feel quite good and can still exercise. What I have heard, but which I cannot validate,is that most people start feeling bad when their gfr drops to ~ 10, although each of us obviously responds differently.

It can be hard to face every new change along the journey. I originally thought I would see a long slow decrease, but was told I would eventually need dialysis. Once I wrap my head around that idea, I was told that I would end up needing a transplant.

Given that your husband is beginning to feel bad, and some of his numbers are not great, I think he needs to strongly consider the dialysis route. If he has not gone to orientation, that might help him understand that need more clearly and the implications on his life. They also have a way if bringing home the reality of where we are at.

I am planning on peritoneal dialysis even the time cones, which will allow them to remove my port post transplant.

Hope my comments gave been useful.

[AnneEG]

Can someone tell me how a fistical is implanted. Do they use a local anaesthetic. I'm terrified of general anaesthetics.

[Hidden in reply to AnneEG]

I'm guessing that you mean a fistula. Since this is a community about kidney disease I pulled this simple explanation from an article from the Mayo Clinic and it explains the fistula. I hope it is what you are looking for.

People who have late-stage kidney failure may have an arteriovenous fistula surgically created to make it easier to perform dialysis. If a dialysis needle is inserted into a vein too many times, the vein may scar and be destroyed.

Creating an arteriovenous fistula widens the vein by connecting it to a nearby artery, making it easier to insert a needle for dialysis and causing blood to flow faster. This AV fistula is usually created in the forearm.

[AnneEG in reply to Hidden]

Do they use a local anaesthetic?

[Hidden in reply to AnneEG]

That will be discussed during your visit with the surgeon should you decide on that modality.