Posted , 6 users are following.
Hi
I am CKD 3 and under medication, my doctor said that my kidney will slowly come to other stages of CKD sooner or later.
I am wondering, if one should directly go for transplant of dialysis? I have red that dialyses may damage other body organs, also success rate is higher if direct transplant with no dialysis period.
Thanks for advice.
CS
0 likes, 12 replies
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marj01201 Colombos
Posted
Colombos,
I have no direct experience with either dialysis or transplant yet. But I have found the same information that you've found when researching these options. If the firectvyrandplant option won't work I've read that PD dialysis may be the better dialysis option as you await the transplant. PD is supposed to be easier on your cardiovascular system. It's also supposed to preserve more renal function.
But again, this is from my reading and the renal failure treatment option class my nephrologist sent me to about a year ago.
Marj
KenR Colombos
Posted
KenR
louise5027 Colombos
Posted
Hi, alot of what happens next depends partly on why you have ckd3. I have been at stage 3 since diagnosis 17 years ago and my Gp doesn't expect it to get any worse over time, obviously with the natural aging process it may well do. I only have an annual blood test and don't see any specialists at all. I do take medication to lower my BP which is well controlled and luckily I don't suffer with many infections.
I wouldn't think to get ahead as it may be that when and if you have to go down the dialysis/transplant route medical science may have changed.
rick39522 Colombos
Posted
First you should understand in more detail what your doctor told you. For a moment consider a totally healthy person with no kidney problems. As they age, their kidney's continually progress to a weaker and weaker condition. Their eGFR level deteriorates slowly over time as they age. Even at a more rapid pace in the "elder" years. Yes your CKD will progress to other stages. There are thousands upon thousands of people who have CKD stage 3 right now and do not even know it. Remember stage 3 CKD is considered MODERATE kidney disease. This does not mean it should not be watched, or that you should not be under medical care or advice, but don't give up so easily. A lot is age dependent. Did your doctor say that one day it will progress to complete failure, or require dialysis or transplant? This is not a sure thing just because you have what is now classified as CKD stage 3. For example, why are you stage 3. Is it because you have two kidneys and they are failing? Is it because you had one kidney removed and therefore are classified stage 3 because one kidney can not be measured as performing as well as two, but that in fact your remaining kidney is perfectly healthy. You need more discussion with your doctor as to your prognosis. He said "slowly". Mine said the same. But I am 68. So will it be slow enough so that something else ends my life before the kidney reaches a stage where dialysis is required? Will it be 5 years, 10 years, never? Of course they do not know exactly but can give you the "averages".
?Now you think should you go directly for transplant? Ah if only it were that easy. Unless you have a friend or relative who will donate a kidney you are instead put on a waiting list. There are literally over 100,000 people on such a list. They are prioritized based upon their condition. I do not think it possible to even be put on such a list at stage 3. And even so, you would be so far on the bottom it would never chosen. And no doctor is going to start dialysis on you now. For what purpose? You have moderate kidney disease. It sounds so frightening I know. But stay on your medications. Watch your diet. Talk to your doctor and ask what they mean by slowly. Do they mean faster than normal (as everyone slowly deteriorates), or over 5 years, 10 years, 20 years? Doe he forecast it will reach late stage 4 or stage 5. And forget transplant or dialysis at this time. It is not going to happen.
Colombos
Posted
rick39522 Colombos
Posted
louise5027 rick39522
Posted
Hi, it's interesting to see the difference between us with medical check ups etc, can I ask where you live and the reason for your kidney problems if you don't mind. I wonder why our care is so different, if it's location/reason etc
Colombos louise5027
Posted
rick39522 louise5027
Posted
Here is my history louise. Early last year I had a fall while walking. My hip bothered me so my primary care told me to go for an xray. I don't know why but as it turns out, fortunately the Xray was inconclusive. So he sent me for a CT scan. Out of nowhere, totally unexpected, not even looked for, they saw a tumor on my left kidney. After more CT scans, ultrasounds, waiting for doctors appointments, transferred to a Urologist (another 2 month wait), on the last day of July 2017 my kidney was removed. (normal procedure would be to partially remove where the tumor was located, but it was in center of kidney so entire thing was removed). The tumor was cancer. The day after the operation my egfr was 35 with high creatinine. Since then my creatinine level has been between 1.7 and 1.9. This is thought to be not ideal, but not unusual for someone with just one kidney. I am 68 years old. Since the kidney removal my egfr has ranged from 35 immediately after operation, to generally then staying at about 37 or 38 (with one time reaching 43). This is considered stage 3b/1A.
?On my remaining kidney is a HUGE single simple cyst (deemed to be benign). It is growing. It can not be treated. To remove it would potentially cause damage to the kidney (my only one). To "drain" it is considered a waste of time since it would simply refill in a few months. IF it starts to present pain, then it will be drained just to relieve the pain. You ask why is my medical "treatment" occasional but not frequent blood tests, scans, etc? Because what can be done? Nothing really. Except to see IF and how rapidly the existing kidney remains. As we age, especially in my age group, even totally healthy kidneys decline. So it is fully expected my eGFR, over time, will go down. It is hope it will be due to age and not failure. I also see an oncologist because of the cancer. Here also, what can they do? IF even a single cell escaped from the tumor, it is lurking in my body looking for a new home. To begin to grow again. In general this too is not treatable. Kidney cancer usually spreads to the lungs, liver or bone. Kidney cancer is generally VERY slow growing (mine was tested as grade 1, which is slow growing). So looking every 3 months or 6 months at the other organs is just to identify growth. Treatment here too is virtually worthless. There are medications that could possible slow the growth if it is found (pill form). But generally not terribly successful. Chemotherapy is not usually done for kidney cancer that has spread. There are immune type therapies. These require frequent hospitalization to get treated, then released, treated then released, etc. Here the success rate is less than 15% and as my oncologist tells me, it is worse than going through Chemotherapy. So is it possible I will live a normal life span and remain in stage 3b or early stage 4 and die a natural death from other causes. Perhaps. Is it possible the remaining kidney will eventually fail. Perhaps. Is it possible that cancer will return. Perhaps. But in general frequent visits to the doctor and finding this out early is of little benefit. And the havoc it will play on my mind is terrible too. Always worrying. I am located in New York, USA.
louise5027 rick39522
Posted
Gosh, that's alot for someone to take on after what you thought was just a fall, but luckily they found and treated you.
It's clear why you are seen alot more often than me. I was concerned my Gp wasn't doing enough but by the sound of it I've got off really lightly.
I hope things go well for you in the future.
louise5027 Colombos
Posted
Your sound very similar to me and to answer your question. You NEVER stop taking your meds without your doctor telling you to. As for the nephrologist I've only seen one in 17 years so it's not necessary to see him monthly.
Yes your Bp is controlled but this is only because of the meds, if you stop them your Bp will just go back up.
shiteh65317 Colombos
Posted
Hey Colombos
how are you holding up? hope your health is getting better and you're stronger with time. I can imagine the stress this must put you through. my friend went through it all and just succeeded to get a transplant. A close family friend(more like a younger brother) died of kidney failure; he couldn't get a transplant. Since then I do everything to help out and I have actually helped a few people and given hope to many. Hope you do not mind sharing; what stage are you now and what are your thoughts or plans?