Recently diagnosed with stage 4 ckd
Posted , 3 users are following.
Hi all. I have had problems with my kidneys since I was born so kinda use to everything by now. Docs gave me a timeline ons how things would progress and to be honest we did not think it will happen this early. I am 28yrs old my count is 23 at the moment it has decreased with 34% compared to test done last year this time so we are pretty much terrified. I am seeing the nephrologist next month but hubby is has had 2 panic attacks since the latest diagnoses. How did you handle the reality of diagnoses and how can I help my family members to be a little bit more at ease?
0 likes, 18 replies
matt66 Twana
Posted
Twana, I know that sudden drop over a year is a shock, but they can stay stable for a time too. From 30% gfr in 2012 I didn't end up on dialysis until 2015. That's another thing, try not to think of it as the end....There's PD and HD.......not ideal but it'll keep you alive a long time.
Have you spoken of getting on the transplant list at art, or is it a destructive kidney disease? Maybe a family member may be willing if a good match. Chin up hun.xxxxx
Twana matt66
Posted
matt66 Twana
Posted
I wish you all the best, and as little pain free as possible. 101 people say "write everything down you want to ask", but alas a lot of us are guilty and forget. Please do start your list now, from everything to "why the pai& how to reduce" to " how long after being on dialysis can I be considered for the transplant list". They're their to assist as much as possible so ask as many frank or what to them may seem irrelevant questions. Wishing you all the best.
marj01201 matt66
Posted
I couldn't agree more with Matt's suggestions. It's important for both you and your husband to get the answers you need.
I actually created a symptom "map" that I took to all my doctors' appointments a few years ago. I used an outline of the human body. Then every single symptom I was experiencing I showed on the map. I was having a lot of left flank pain so I drew a line from the words left flank pain to the left flank area on the human map. I was experiencing moderate leg cramping in my calves, thighs, and abdominal area, do I wrote this on the map and drew lines, etc.
I then had then showed each doctor the symptom map. I asked three questions:
1. Are any of these symptoms most likely BOT related to what you're treating with me?
2. Are any most likely related to what you're treating with me?
3. Can any be resolved? If so, what can we do to resolve them?
This seemed to clearly communicate to all the doctors I was seeing exactly how I was feeling on a daily basis. It also lead to clarification of who was responsible gir treating what. Up until I used this symptom map I wasn't sure I was accurately and consistently communicating with each of my doctors.
I also used this to convey to each doctor what the other doctors I was seeing were doing with my treatment plan. That seemed to be very helpful as well.
About three months after I started using this symptom map I was beginning to feel better. We just gradually addressed one set of symptoms at s time until we had the bulk of them resolved.
For me the biggest issue was very low blood pressure and sudden plummeting blood pressure. Those issues were even worse than the severe anemia. Unfortunately the nephrologist I was seeing at that time was not able to effectively treat either issue. I shifted to a new nephrologist about a year ago. He has been able to resolve both of the blood pressure issues. That has lead to a modest improvement in my renal function. But I'm still expecting to be on dialysis in the not too distant future.
The other thing I agree strongly with Matt about is the need to have a frank conversation with your nephrologist about transplant eligibility testing. And you should ask for patient education about types of dialysis. (Both of these will be important for your husband to do with you I suspect.) without the patient education you and your husband won't be able to make informed decisions regarding your medical care.
I think it's critical that we are each active participants in our medical care. I've certainly had to learn to be much more assertive. It wasn't always comfortable for me at first, but it has, I'm convinced, lead to better care.
I'm hoping they'll be able to figure out what is causing your pain very soon!
Marj
matt66 marj01201
Posted
Marj, I'd never thought of a symptoms map!,! Hope I won't need one again, but a cracking idea!!
marj01201 matt66
Posted
I'm doing A LOT better now so no longer need my symptom map, but it certainly seemed to help when I was using it.
I'm certainly glad that I'm feeling so much better now🐶
Marj
Twana marj01201
Posted
Marj,
This is such an awsome idea, is there anyway you can email e an example of the symptom map, I would like to use it when I go to the neph next month. thank you for sharing I have really been put to ease with you and Matt's guidance.
marj01201 Twana
Posted
Marj
marj01201 Twana
Posted
Teams,
I'm so sorry to hear about your kidneys. Aa a word of encouragement, ill share a little about my father's experience with CKD.
I never knew my father when he didn't have CKD. It was his normal. It was also our family's normal. He and my mother, as a team, did such a great job managing his CKD. They may it seem so doable!
My father worked full time until the final 4 years of his life. He put all of his children through college, participated in their weddings and welcomed 4 grandchildren into this world.
as a family we made, without giving it any thought, accommodations for his CKD. I remember my mother asking us to play outside when my father got home for work. This was do my father could take a nap before dinner. (Now that I'm grappling with Stage IV CKD I have s much better understanding...my father was dealing with anemia. At that time the common treatment gir anemia was blood transfusions. They didn't work terribly well. No wonder my father needed a power nap after working all day before he was ready for dinner.)
As I child I noticed various foods no longer showing up at dinner time and favorite recipes being modified. I now realize that my mother was modifying the menu to meet my father's chsnging dietary restrictions as his CKD progressed. When my mother passed away the only thing she specifically wanted me to have was her hand written cookbook. In it I can see how she modified family recipes as my father's CKD progressed. The modifications and the nutritional calculations to go with each are written in the margins. When my mother willed her cookbook to my I wasn't yet diagnosed with CKD--but what a treasure trove of renal-friendly family recipes!!
Eventually my father's kidneys failed,. He wasn't a transplant candidate. My mother and I went to Wichita, KS where we learned how to administer in-home HD dialysis for Dad. My mother was nervous. My father approached it with his typical sense of humor.
We found in-home HD to be workable for my father and the family. It was just another change in the family routine--we had changed the family routine to accommodate Dad's labs, do tor's appointments, energy level, and do forth on s daily and weekly basis throughout my life. So this was really not that different.
As a family we travelled and did anything we wanted; we just had to plan ahead--it just took more organization.
Life will go on. And it will be as good a life as you and your family choose to make it. I certainly wouldn't have wanted anyone else to be my father! CKD was just something he dealt with, it certainly didn't define him nor did he allow it to restrict him from doing what he wanted to do. He and my Mom were an incredible team. Together they made managing CKD seem so very doable; so totally normal.
Marj
marj01201
Posted
Sorry for all the typos--my auto correct doesn't always help that much🐶
Marj
Twana marj01201
Posted
Thank you so much for taking the time to tell me about your experience as a family member, I have started to deal with the realities and awaiting to see how the treatment plan will affect our day to day lives, I am ready but I can see it really is taking a toll on my husband, unfortunately my one symptom is constant severe pain especially at night so for him to see me like that I know bothers him but I try and not complain yo much as I know how its been affecting him.
alia04278 Twana
Posted
my bro-in-law was diagnosed with stage 4 kidney disease at our local hospital. he also has a weak heart and has been told today, after he had been asked to give names for transpklant candidates, that not only is he no longer a transplant candidate, but because he's not one, he won't be eligible for dialysis. It infuriates me that this sounds like he's been written off. is this legal?
marj01201 alia04278
Posted
Alia, transplantss, in general, do not exclude a person from qualifying for dialysis. Are there other medical complications that would cause your brother-in-law to be ineligible for dialysis? I'd definitely ask more questions. I'd also consider getting a second opinion.
Let us know what you hear. This is definitely not easy!
Marj
alia04278 marj01201
Posted
thank you so much for responding. My bro in law , 45, has a weak heart and two weeks ago went into dka because the first two doctors he had gone to did not hear alarm bells when his sugar hovered around 20-22 for several days. When he went back to the public hospital he had visited in the first place, they diagnosed dka and he felt better after, to me it sounded like he was misdiagnosed the first time. That was also when he was told about having stage 4 kidney disease. In general his whole family is ignorant about his condition, including me, but I feel it's not right to write off a person like this; I could be wrong. Will a second opinion have to be that of a nephrologist? I learned about this only now that I have read a few posts. Even though it's not my condition, it is a relief to be able to chat with people who understand. Thanks again..
marj01201 alia04278
Posted
Yes, I would definitely suggest a nephrologist for a second opinion. My father had chronic kidney disease resulting from chronic, severe hypertension. So his heart was definitely in very poor condition when he reached stage v. He wasn't a candidate for a transplant but he was definitely a candidate for dialysis. He lived on dialysis for close to three years which was the average life expectancy for persons on dialysis at that time. (He passed away 30 years ago.) Frankly, his doctors didn't expect him to live very long on dialysis due to the severely weakened state of his heart. Inspire of their thoughts about that they certainly offered him and my mother the dialysis treatment option.
Thus, I'm a little surprised that your brother-in-law would not be offered dialysis as a treatment option when he reaches Stage v. Regardless, he should be referred to a nephrologist and will remain under the care of a nephrologist for as long as his renal function is compromised.
Currently there are three treatment options for Stage v renal failure:
Transplant (for those who qualify)
Dialysis (either Hemodialysis or Perioteneal dialysis)
Conservative care (no formal treatment but "comfort care" to manage symptoms as the condition progresses)
It sounds like your brother-in-law was being told that he only has the third treatment option for some reason. I'm not sure where you live--I'm in the United States. Here far too many General physicians are poorly informed about chronic kidney disease. In fact, it's not uncommon for primary care physicians here to miss the early warning signs for CKD. So for us it's imperative that we get to a nephrologist--the sooner the better.
I'm in low Stage IV right now. Sometimes my data comes out in high Stage v. I've already been to patient education classes about Stage v treatment options. My next appointment with my nephrologist is Nov 7th. In that appointment we'll talk at length about transplant eligibility testing. We've already talked about dialysis; however, we'll talk more about that in my next appointment as well.
Some on this website choose conservative care. Others choose transplants. Others are not eligible for transplants but choose dialysis. Within dialysis some choose HD and others PD. I have found it helpful to participate to learn more about the ups and downs of each of these treatment options.
It's important to learn as much as possible--which is a challenge when first dealing with the diagnosis and it's shock--and to advocate for effective treatment regardless of the treatment option chosen.
And one final thought, a nephrologist will first strive to imorocecrenal function. Ic that isn't possible the goal would be to stabilize function. And, if that isn't possible, the goal becomes managing symptoms so the person can function as effectively as possible and feels fairly well overal. I'm still working full time. I am single and live alone. (I am the last person living from my immediate family.) Of course I have friends and neighbors who provide lots of support for which I'm thankful. However, my point is that it's quite possible, with effective treatment, to feel and function quite well on a daily basis with CKD. It just requires vigilance.
Marj
marj01201
Posted
Sorry for the typos--hopefully you'll be able to decipher what I was trying to say without too much difficulty🐶
Marj
alia04278 marj01201
Posted
Thanks for the response.Im learning so much, but it terrifies me. My husband is also diabetic but in better condition. My bro -n-law's doctor told me a new kidney would be destroyed in 6 months by heart and other problems, so no dialysis either. Never mind that it would ease his pain somewhat. Private care I discovered will cost about half a million before dialysis is even started. It's a curse to be poor, over 45 certain race group and suffer from ckd in this country. In few years I'd find that my taxes i'm paying would not guarantee placing on a list should I develop this problem. His doctor told him theres nothing the hospital can do for him. It's heartbreaking and a disgrace that in SA we are allowing committees in hospitals to decide who lives and who dies.
I will be keeping in touch and find out about HD and PD. God bless; hope everything of the best for you too.
marj01201 alia04278
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We went on brought a period in our history where only a few were allowed dialysis because there were not enough dialysis machines available throughout the nation. I know that was heart breaking. I can't imagine what you and your family are going through--you are in my thoughts and prayers!
Marj