Scary times

[sbrenn01]

Just learned that my gfr is down to 14. I knew dialysis was in my future but now it looks like it is here. Not a candidate for peritoneal dialysis because of too many abdominal surgeries. Worried about having cannulas in my arm. Seems like a high risk for infection. I had MRSA and it was very unpleasant. Plus, the idea of having to be tied to a machine is frightening. I have to make frequent trips to the restroom. Nephrologist talking about doing dialysis at home; I hope my wife and I don't make a mistake.

[Bassetmommer NKF Ambassador]

Hu Sbrenn, How do you feel physically? Do YOU feel it is time for dialysis? The reason I ask is because the patient should have input on when to start. A GFR of 13 is not all that low that unless you are not doing ok, feel terrible and out of sort, you can see if you might do well to hold off. I say this based on many people who are on this site, and myself. I was told in 2018 to prepare for dialysis within 6 months. I was at GFR between 15 and 13 for over the last two years and my last lab in March my GFR came up to 18. I did this by changing my diet and exercising. I am not telling you what to do but offering possibilities of things you can try.

Let me know if you are interested in more information about renal, plant based, or vegetarian diets. Many, many will tell you how it has helped them.

[sbrenn01 in reply to Bassetmommer]

Thank you Bassetmommer for your reply. I don't feel well. I've been to the ER many times for low magnesium. I spent 10 days in hospital in November; got Iron infusions, magnesium, potassium and procrit. I have no energy, this is probably also due to my Crohn's disease.I don't know what to do, TBH. I know I'm leaching protein in my urine. I sleep a lot. I don't have any quality of life. One thing I've experienced is that sickness is a slow gradual thing and I may be so sick I don't remember what "normal" feels like. My Hemoglobin is 9.5, RBC 2.93, hematocrit 28.9, platelets 106. To me this isn't very good. But doctors (hemotologist and Nephrologist) don't seem overly concerned. Lack of understanding on my part and fear of unknown aren't helping.

As far as diet, because of Crohn's and bowel surgeries I'm not sure if I can tolerate it. But I am interested in knowing about them!

[Ziggydoodah in reply to sbrenn01]

Hi sbrennI am due to start dialysis in about 3 weeks time. I have physically and mentally resisted the idea of dialysis to the point , where I think I was in total denial there was anything wrong with me. My GFR is down to 9%. I could not have peritoneal dialysis due to a gallbladder operation. I was told they were more prone to infection than a fistula. I got my fistula fitted 2 weeks ago and its healing nicely. Im not sure what changed but after I got it I realised I was wasting energy fighting the thought of dialysis. Im not scared of it its more the inconvenience of it all. I did speak to the renal nurse regarding it all. She said there maybe a few setbacks at the beginning but I should see an improvement in my physical well being. When I feel an improvement, I will realise just how ill I was and not realise as I am so used to fatigue etc. I said i just want to get up in the mornings and feel refreshed. I havent felt like that in years, no matter how much sleep I get. I agree with everything Bassetmommer has said also. I feel a sense of calm now that I have accepted my situation. Believe me it has not been easy, I have fallen out with numerous healthcare professionals as I dont agree with them. Wishing you all the best.

[sbrenn01 in reply to Ziggydoodah]

I'm in the same boat. I really don't want to be tied to a machine 4 hours a day. The dr. is saying home dialysis and that's scary because I don't want to make a mistake, or burden my wife. Plus with Crohn's disease I need a bathroom close by. I'm scared of the dialysis catheter; how do I keep infection away? How long do they last? My arms have gotten skinny over the past year. Can I exercise, assuming I feel better? I've read that dialysis can cause fatigue. I'm already wiped out with fatigue from anemia and Crohn's. Frankly, I'm scared.

[Jayhawker in reply to sbrenn01]

Have you had one EPO injection only at this point?

I ask because I was in renal failure from early January 2017 until my transplant a year ago tomorrow but never placed on dialysis.

My hemoglobin was often below 10.0, sometimes as low as 5.6. I had EPO injections weekly which were a game changer for me with the anemia.

My foggy brain and exhaustion were much better. My energy level was much better. Once my anemia was under effective treatment, it was possible for my nephrologist and me to sort out how I was actually feeling and functioning.

Jayhawker

[KidneyCoach NKF Ambassador]

Check out kidneyschool.org also this book

The arm accesses are the best. Any neck or chest catheters carry a much higher risk of infection especially being around other patients in a clinic setting.

I've been doing home hemodialysis for over 20 years. Nurses and techs in clinic are human and make mistakes, we all do. If you have a good trainer they will teach you how to manage if mistakes are made. Blessings

Okay

[sbrenn01 in reply to KidneyCoach]

Thank you, I really appreciate your post!

[Lilly234]

Hi sbrenn01. I am a 74 year old female and I have been on dialysis for 3 years with a fistula in my arm. I went to see a surgeon the other day to inquire about at home dialysis. I wanted to do the overnight. This would be every night but then I would have the days to myself and I did talk to someone who does this and is happy with it. The only thing I don't like is the fact that there is more of a chance of infection because you cannot get the area wet. Also, I love to swim for exercise. This is out of the question. Now, I don't know if this is for me. Think about this. I am still thinking about it and don't know what to do. Good luck.

[Darlenia]

I so feel for you. My hubby went on dialysis at age 70 - he's a Type 2 Diabetic and it took his kidneys. I thought it was the end of the world. He went into the hospital at the start of the Covid epidemic and I couldn't get in to see him. In retrospect, I went through a lot of unnecessary worry. The despair was everywhere. I'll never forget picking him up just outside the facility - his energy level had improved, his physical appearance was better, and more. He wasn't near death after all! Sometimes we think the worst when, in actuality, the opposite happens. (In retrospect, the spiral into dialysis, not dialysis itself, was the most heart wrenching and nightmarish for us.) If I could have said something to myself back then, I would urge myself to simply embrace each day, block out the negative thoughts, find something positive (large or small) to do in the hours you're up, and watch matters unfold in real time (not mind time). Doing that is enough. So here I am - sending a little encouragement and positivity your way! See what tomorrow brings, don't bring tomorrow into today.

[sbrenn01 in reply to Darlenia]

Thank you so much Darlenia! I needed that boost. I've learned from Crohn's disease that you can feel really bad without realizing how sick you are. I hope the dialysis will improve my life. Right now I have no energy at all. I get winded very easily. Monday I see my Nephrologist, I hope he gets me started on dialysis so I can have quality of life.I hope that, once the lumens are installed in my arm has healed that I can spend time in our pool. It's very good for me physically and emotionally! God bless you Darlenia!

[Ladyprudence in reply to Darlenia]

Darlenia, I'm fairly new here and was scrolling through older posts. I see this thread is about 2 years old. What I want to say is your response to sbrenn01 is so encouraging. I know that not every situation comes out as well as your hubby's, and I don't even know if he's still living today. But thank you for that sensitive response to whoever was lucky enough to read it.

[Darlenia in reply to Ladyprudence]

Wonderful hearing from you - It's so nice seeing you in our lovely community! My hubby is still doing well today! He received a transplant as a senior citizen! We accepted a deceased donor kidney with issues (older kidney with fungal issues, etc.) and it's performing well. Looking back, everything truly happens as it was meant to be - I feel that deeply. If nature had taken its course, my dear partner would have passed away a long time before now. I'm eternally grateful to dialysis for extending his life. And now the transplant is doing that too. Our journey hasn't been smooth, there have been peaks and valleys throughout; however, looking back, I still think that the worst time of my life happened right before my hubby's natural kidneys collapsed. All I saw was darkness ahead - nothing more. I suffered needlessly. So I embrace each new day as a gift to cherish and to redirect my thoughts from future imaginings - the future will come on it's own timetable and unfold in its own way without my help. No need to hurry it! As the saying goes, "Yesterday is gone, tomorrow isn't here, the only day you have is today!" May we all live life fully!

[Lovemypets]

What about your diet? Have you tried raising your GFRs? It is a lot about diet - especially meat. Check out Bassetmommer below my post. Raised mine from 50 to 64 over a several-month period. NO medication, just diet.

[barbara55109]

I sure can relate to not knowing what "normal" feels like. I had ulcerative colitis from teenager to age 30. I have been colon free with a high output ileostomy for 30 years. I developed avascular necrosis - bone death - in my knees and ankles from IV prednisone. Now I have CKD stage 4 from the constant dehydration. I have a parastomal hernia next to my ileostomy so blockages are a major concern. No veggies for me! My eGFR has hovered around 20 for two years now. I got on the transplant list in February, but it is a 6 year + wait. I am VERY afraid of hemodialysis because they don't understand how to deal with someone without a colon. I'm always dehydrated so if they take too much fluid off it gets very painful and risky. I have found few other people like me. As I approach 60 I realize I can't remember ever having a day without pain or illness.