Mom is being told to prep for dialysis; is it too soon?
Posted , 5 users are following.
Hi, My mom has had ckd for two years. She'd had high blood pressure and loved her nightly Advil to help her sleep. She was between stage 3 and 4 originally (3+creatinine was brough back to below 2.0 when she stopped all meds), but now, her readings are around 3.2. She is on prednisone for pmr (3 mg), uloric for gout, amiodraone for afib (100mg), and lasix (it changes depending on ankle swelling) . She also take 10 mg simvastastin (which I had thought I'd read should be avoided with amiodarone). Her stamina is declining, and she gets dizzy when she walks. GFR is 13 or 15 (depending on which racial profile you select). Her nephrologist wants to "map" her arm.... because he thinks dialysis is just around the corner. Her cardiologist and primary say she doesn't show the symptoms requiring dialysis, and she could stay like this for quite a while. She is 82. Dialysis will be her new way of life. Obviously, I want to postpone this. I'm not sure which symptoms are ckd, and which are related to her still-minor diastolic heart failure. My questions: when do we take the leap to dialysis? What is there to expect? Will life rapidly decline and will life expectancy shorten when she starts the dialsysis?
0 likes, 10 replies
weeled TMNA
Posted
Hi tmna, hope your mum is coping well. And likewise, hope you are ok. I'm sitting at 13% gfr and have been told dialysis is dependant on your lifestyle. I don't have a manual job, and don't feel unwell so have held back on dialysis, but if I was feeling unwell, nauseous etc, it may speed it up. If your mums lifestyle doesn't lend to worrying about fatigue and she's not unwell, it won't be imminent.
TMNA weeled
Posted
Thank you, Weeled. This is reassuring. I was very, very, worried. The nephrologist says that prepping/mapping her arm would be the way to go, because if we don't do that now, they would have to go with her neck when dilaysis is critical? This is the first I'm hearing this. Can we map the arm, and just hold off for another year, or however long it takes?
weeled TMNA
Posted
I'm assuming mapping means a fistula? When my dad had his (I've a hereditary ckd) he was told it takes up to 6 months to heal and be ready for dialysis. Sounds like they are just preparing your mum for the next step. But to answer your question, yes she gets mapped then waits. It won't be tomorrow it's being used.
TMNA weeled
Posted
Six months? Wow. I was thinking weeks. I guess it won't hurt (well, maybe for her?!) to go in and prep her with the fistula. Thank you.
helen54849 TMNA
Posted
Hi,
Fistula's these days take between 1 and 4 months to heal and like explained they can do an emergency line so do not worry if your Mum needs dialysis urgently then she will have it
han19505 TMNA
Posted
My mom is 70 and was diagnosed of CKD stage III one year ago. Her GFR was 32 when she was first diagnosed with a creatinine of 2.8. She is a diabetic for 20 long years and hypertensive for 40+ years. She still holds a full time job as a teacher and does her chores by herself with limited help. Doctors always said that her GFR would drop and she might need dialysis anytime and to be prepared, but luckily, she follows a CKD diet and surprisingly, her GFR has gone up to 38 now with a creatinine maintained at 1.4. This could also be due to some homeopathy regimen that she started a year ago for CKD or her lifestyle change.
Like Weeled mentioned, dialysis is dependent on lifestyle. My mom follows a strict fluid restriction (tough in summers though!) and salt restriction and sticks on to the list of foods she can have for CKD. I guess lifestyle changes really can keep dialysis away for as long.
We know that something is wrong with her creatinine and kidneys when she complains of dizziness, urinary incontinence, ankle swelling, and variation in her blood pressure. Sometimes, symptoms coincide with diastolic heart failure also yeah? Before she was even diagnosed of CKD, her ankle swelling was thought to be due to uncontrolled hypertension and she was being treated with continuous Lasix of high doses! Only later they thought it could be due to kidneys!
With a GFR of 10 to 15, doctors surely would think of dialysis. One good thing about dialysis is they can be slightly relaxed with the diet part and I have personally known people who have lived for 15+ years only with dialysis! so even if that happens, not to worry. I used to go to a dialysis center when mom was diagnosed of CKD just to know what to expect, but many patients there lead a very normal life and do their daily chores independently and have lived only with dialysis for very long time like I said before. Once on dialysis, what matters is to maintain the weight between sessions, (any weight +5 pounds indicates fluid overload), maintain blood pressure, and people do fine.
Take care
TMNA han19505
Posted
Thank you so much for taking the time to explain in detail. You're right... I don't know what to attribute to ckd and what is linked to heart failure. I have always been afraid that the dialysis would the beginning of the end...... We did up the lasix to 80 mg/day.. which helped with the swellling, and probably the discomfort of heart failure.... but I've been told this is not good for kidney failure.
Any tips I may be overlooking? We are avoiding animal protein, but sometimes, she indulges, if she eats out (and only just a "taste." )....
Again, thank you very much!!
susannah74731 TMNA
Posted
Hi TMNA
Firstly I know it's a very difficult and frightening time in the lead up to dialysis. I've just been through it myself so I can understand the concerns you have for your mother.
What I can tell you is that it's best to get her arm mapped and get the fistula surgery done as soon as possible because the vein ideally needs a minimum of six weeks to develop before it can be used for dialysis.
I was diagnosed with kidney failure with a GFR of 16% in May this year and it dropped steadily until I was at 5% this month.
I was in a position where they were going to put a central line in my neck because my fistula wasn't ready to use. It caused me so much stress (see separate discussion on this) as I wanted to avoid another unpleasant procedure.
Happily in my case because I am fairly young, my fistula was deemed useable at three weeks old so I've had my first dialysis sessions this week and am feeling a lot better already. The sickly feeling has gone and I've got some appetite back. Once you get used to dialysis it's not so bad.
I hope this helps and best wishes to you and your mother.
helen54849 TMNA
Posted
Hi,
They start talking about dialysis around a GFR of 15% I didn't start mine until I was 7% but they have to put things in place and give the fistula chance to heal (if need be they can put an emergency line in her neck to give dialysis) The issue will not be the dialysis it will be your Mums age and other health conditions. She will not pass away from kidney failure. As we get older dialysis is not effective for long and there is her heart condition to take into account you need to prepare yourself mentally. Having said that we are all different. Tiredness and breathlessness are parts of CKD as is not wanting to eat. When she is on dialysis there will be fluid restrictions so she will only be able to drink a small amount and she may suffer with low blood pressure and dizzy spells and even oass out until they regulate the amount of fluid they take off, don't worry this can be amended and sshe will feel better and start to feel the benefits after a few sessions. There may also be some food restrictions but the neph should go through all of this with you both. Good luck and don't worry.
TMNA helen54849
Posted
Thank you very much. This is all useful advice/info. It just seems like a big leap, and with every change she's had, we've had complications.