GFR dropping and no idea how long this will go on

[Jmccool]

I am back again to update my husband #’s his GFR has now gone to 9 down 1 point in 3 weeks. His creatinine level 6.46 and Phosphorus up to 4.9. He still has not been to the surgeon says he will keep his appointment this month. Just don’t know what to do at this point...

[rabbit01]

Hello, I am at the same eGFR as your husband and I met with the PD surgeon last week and got a date for the operation. I can understand your husband's reluctance as I keep questioning whether or not being on dialysis is something I can cope with. I have never seen a counsellor or been offered one although this might be something that your husband may benefit from. It is good that he intends to keep the appointment later in the month.

[Jmccool in reply to rabbit01]

Thank you for your response. He has rescheduled 3 appointment with the surgeon. How long before they want to do your surgery? I know his nephrologist is going to be very upset he hadn’t gone yet.

[rabbit01 in reply to Jmccool]

I can relate to how he feels. The surgery is scheduled for 5 weeks time.

[Jayhawker in reply to rabbit01]

Sending you nothing but good thoughts!

Jayhawker

[rabbit01 in reply to Jayhawker]

Thank you.

[Jayhawker in reply to Jmccool]

Hoping he’ll get to the appointment this time. He should feel a lot better once he starts dialysis.

Jayhawker

[Kbressler NKF Peer Mentor NKF Ambassador]

Has there been any thought of seeking a living donor for transplant? That would be my suggestion.

[Jmccool in reply to Kbressler]

He is fighting any type of surgery. He was put on the transplant list and told them to stop calling him. He thinks there is some miracle that’s going to happen. Very frustrated...

[Kbressler NKF Peer Mentor NKF Ambassador in reply to Jmccool]

Well, my best wishes and prayers are with you both.

[Jmccool in reply to Kbressler]

Thank you

[WYOAnne NKF Ambassador]

I don't quite know what to say, because this is all up to your husband. He, and only he has to come to the realization that this is his life and he can change things. Does he have a close friend that he could talk to about this? or is he willing to see a counselor? what about your pastor or priest? Someone has to be able to get through to him.

Pre-transplant I was in denial too, but then I started being so nauseated that I was vomiting everyday. That did it for me, and I started dialysis. It made such a difference.

I hope he keeps his surgery appointment. It is vital for his well being.

Sending positive thoughts!

[KidneyCoach NKF Ambassador]

I'm very sorry this is happening. He sounds like he's going through the stages of grief for loss of a normal life. I've been through them many times in my 18 years of dialysis. It is normal to feel this way. No amount of pushing will hurry the process. He will have to come to terms with it in his own time. As others have said, finding a good counselor or therapist, friend, priest whom he feels comfortable with may be very beneficial for *both* of you. Separately and together. It is a loss of normality as you know it. It is not however a loss of a "new" normal which is of your own making. He may be able to continue or learn new hobbies. Many continue to work, go to school, take community classes even learn a new career, travel and more. Check out kidneyschool.org or the book HELP! I need dialysis. from Medical Education Institute. Its only $6. It is VERY worth the money. Keep us informed. Above all, you're not alone. Blessings

[Jmccool in reply to KidneyCoach]

Thank you I’ve tried to get him to speak to anyone I thought he would listen to. Now I’m having panic attacks, my blood pressure is going up and my IBS is always torturing me from the stress. I know it’s nit about me but i feel like I’m slowly slipping into a depression over it. I guess the only thing there is to do is nothing it’s up to him. I have to keep going for our family even if he won’t. I’m angry, sad and disappointed.

[KidneyCoach NKF Ambassador]

Sadly he will have to control his health. See if his nephrologist can refer him to a clinic social worker. In the meantime find someone for yourself. You must take care of you first or you won't be able to take care of anyone else. Take care of your health and get to a counselor if you can. Sending you gentle hugz and Blessings

[Alexperk]

I think you should try to figure out what your husband is afraid of. If he is afraid of dying then maybe explain to him that refusing any treatment is the best way to die.

[Jmccool in reply to Alexperk]

He’s afraid of anything Medical and he does not want to change his life. And I tell him every time you will not have a life....

[Alexperk]

Many men are like this. My husband has an enlarged prostate. 20 or so years ago he was told he needed a surgery, but he refused. He even did not want to take medicine, and was taken supplements instead. Then in June of this year his GFR was 29 and his creatinine was 2.11. I told him that in a few days he will end up on dialysis. Then he agreed to do something about his prostate, except not only his kidneys, but his bladder is compromised too. Now he ended up with an indwelling catheter. The kidney function slightly improved, but he is having UTI after UTI.

At first, when he was told he has stage 4 kidney disease he told me he was going do nothing. It was useless to try to make him to change his mind. So I told him that if he does nothing he will die, and it is up to him to make the decision. Then he agreed to insert the catheter. I wish he followed up with the doctor advise 20 years ago.

If your husband retaining more than 300 ml of urine, inserting a catheter might improve his kidney function. Have you ever checked what is his PVR? It is a very easy and absolutely painless test.

[Jmccool in reply to Alexperk]

No I haven’t heard of that test. I will ask the nephrologist. He wants to do the peritoneal dyalisis but he keeps canceling his appointment for his port. I’m worried with how fast his GFR is falling he may not get that type and end up in the ER with a tube in his chest. It’s nearly impossible to reason with him.

[Alexperk]

Do you know what is the reason behind his CDK? The only reason for my hubby was his prostate. His urine was flowing back to the kidneys. The test I told you about is called ultra sound. They would ask him to pee and then take a look if any urine is left in his bladder. No matter what is the reason behind his CDK, but the less urine is left after he pees the happier the kidneys are.

Also I would not like to scare you but with GFR 9 there might be little time to go to ER. What is his potassium? How he feels generally?

[Jmccool in reply to Alexperk]

His potassium is normal his phosphorus is high and his bun level. He has had high blood pressure for years we have only been married 3 once I found out his health issues I had him put on bp meds etc. He falls asleep everyday in the middle of the day, he has leg cramps and nausea. He’s to the point now where he doesn’t even tell me when something is wrong. He was fine I never knew he was sick until this past year he just fell apart fast. He also has Hereditary polycystic kidney disease. His grandmother, mother and aunt had it. The only one alive is his aunt. He just turned 53.

[Alexperk in reply to Jmccool]

I see. If he is only 53 maybe his prostate is still OK, but still worth checking. My hubby is 79. When his GFR was 29, his blood pressure was 220 and medicine was not helping. His potassium was high. He had cramps in his legs, which happens with CDK.

Your husband is young. The best option for him is probably transplant, but before this he has to do whatever it takes to survive. Just tell him that it is a very common procedure, that even kids have it, that there is nothing to be afraid of, that he owns it to you to take care of himself.

How old was his mother when she died?

[Jmccool in reply to Alexperk]

His mom was 72 but his grandmother was young. All I can do is keep pushing him And pray.

[Jayhawker in reply to Jmccool]

This is such an individual journey all of us with CKD travel. There really is no right or wrong answer. Would your husband go to an appointment with you to explore palliative care, i.e., keeping him comfortable as he proceeds without treatment? If he really doesn't want treatment, he may be interested in talking with a specialist who can set up a solid palliative care plan for him and his family. If not for himself, perhaps he'll consider doing this for you and his family.

I'd think that the person who facilitates a palliative care plan for him and his family will want to know that he made this decision when not extremely depressed, etc, and with full understanding of the ramifications of his decision. Thus, I'd expect there would be some discussion of these issues.

If he won't go with you to an appointment to set up palliative care, I'd strongly encourage you to seek out some counseling for yourself and the rest of the family. This sort of situation is incredibly difficult for everyone involved. I'd suspect that you and the rest of the family have lots of questions and concerns about how this will progress for your husband, etc. Then, there is the emotional stress and strain this puts on everyone in the family.

My mother was ultimately diagnosed as terminally ill with colorectal cancer. Once that diagnosis was placed, we wanted to be sure she got a chance to see her elderly siblings who lived in upper-state New York. (She lived in Kansas.) She also wanted to have a week at her house with all her children and grandchildren present. My sister and I planned that. These were actually good times for my mother and the family as a whole. Of course, we knew we would likely not all be together again until after she had passed; but we set our minds on enjoying this final wonderful time with her . . . We didn't focus on her impending passing; instead, we embraced the time we had together. There was no stress or pressure about her health. Accommodations were made on a daily basis to adjust to her stamina, etc. Food was modified to take into account her appetite. When mom needed to rest, she dozed off hearing us playing card games or doing other things together. She would fall asleep with a smile on her face. She knew her family would carry on; after all, she had raised us to do just that.

I'm not sure what your husband will ultimately decide. But, I hope that you and the rest of his family will get the help you will each need so you can support him in the decision he makes.

This is truly not easy.

Jayhawker

[Jmccool in reply to Jayhawker]

It’s just devastating he won’t listen . 😞

[Jayhawker in reply to Jmccool]

My heart goes out to you and your family.

Jayhawker

[Jmccool in reply to Jayhawker]

Thank you

[Philipjm]

Hi, your husbands levels are concerning. Please have no fear of dialysis which ever form he has. At this stage dialysis is becoming rather urgent.

A PD catheter procedure is normally a day case and would start dialysis within 2 weeks of the procedure. CAPD worked well for me and transformed my life. I started PD at a eGFR of 9, bloods quickly “normalised” for some one in Ckd5.

Did PD for 2 years , had to start heamo as I had an infection ( this was my own fault) Been on home heamo for 2 years, have been on nocturnal home heamo dialysis for 20 months now and feel great, bloods each moths are exactly where my consultant wants them to be, at my lady consultant clinic just 2 weeks ago my consultant ( he is world renowned) told me I was boring and and had nothing to say) I am

On the transplant list, average wait in the Uk is around 3.5 years, been for 2 but each time was a no go after several hours, last time was gowned up and ready to go but that’s life, it will happen soon.

I have a good life, still work with a demanding job ( I am 72) I travel and enjoy life to the full. Just means a little more planning for what you want to do and to be disciplined in your life. Dialysis fits in with my life and does not define me. Please have a positive outlook on life and what it has laid on you, work with your renal team and life will be great again.

Best wishes

Philip

[Jayhawker in reply to Philipjm]

I agree; life on dialysis can be a good life; it’s hard to see a younger person avoiding treatment without trying it.

Jayhawker

[DarbyWills]

Greetings! I feel for you and your husband. Just had my PD cath placed a week ago and my feelings were somewhat similar to your husband's. Having the cath placed is a very wise idea though as his creatinine is quite high and his gfr probably tanking too. Have it in place for when dialysis needs to be started. And it sounds like that is going to be soon. If he has an emergent start that will mean something called a central venous catheter (CVC) will need to be placed in his chest to perform hemodialysis. It is painful when they place a CVC, its a catheter dropped into the heart (read more about that )his risk of infection and death not to candy coat it.

My last GFR was 12 my creatinine 3.99 and my BUN (blood urea nitrogen) waste products in blood was 83 and my nephrologist was freaking out. I feel fine same as I have for quite awhile was going to wait to start when my GFR hit 10 or less we will see. It is time. If you want feel free to contact me we can chat more...best of luck