Chronic Kidney Disease (CKD)

Strongwoman

Throwing this out there.  Does anyone currently have this or recently been diagnosed? 
If so, what has been treatment protocol?
How are you feeling with it?

HoldingOn

Hi @Strongwoman, I was diagnosed with CKD 12 years ago. The major concern my oncologist has is that I remain well-hydrated. CT scans with contrast are done with a minimal amount of dye, and hydrating before and after the scan is essential. 

Because my kidneys no longer have the ability to adequately excrete potassium, my diet is limited to low-potassium foods  (which excludes most of favourite things to eat, like tomatoes and beans of any kind 🙁) and I take Resonium Calcium, a powder recommended by my pharmacologist to prevent potassium from being absorbed. 

CKD limits my energy and I have chronic insomnia, mostly the inability to fall asleep; my appetite is poor and I have lost a lot of weight before and since my cancer diagnosis in 2018. The cancer and subsequent seemingly endless rounds of chemotherapy likely both contributed to this. 

My ability to think clearly has also decreased and it’s been hard to come to terms with that when once my mind was sharp and I could concentrate, think critically, enjoy the ability to be creative and have a overall clarity I could depend on. 

CKD has also limited my cancer treatment options as some chemotherapy medications are off limit due to the effect on kidney function. 

I hope this rather long missive gives you an idea of how kidney problems have affected my life, but the diagnosis of CKD is a general description and symptoms are varied, depending on the type and severity of dysfunction you may have.

Has your doctor just recently diagnosed CKD?  Have you had a discussion about how this might affect your current diagnosis and treatment?  

I understand from your previous posts that your prognosis is, like mine, poor. I hope that you’re able to carry on day to day and enjoy life in spite of everything. From what little I know about you, I do know that your spirit is strong and I believe more and more that it is determination and strength, or maybe just plain old stubbornness, that keeps us going no matter what doctors have to say. I hope your candle stays lit for many years to come ❤️🕯️

Strongwoman

@HoldingOn
  Thank you for your response and information.  NO, no one has informed me I have chronic kidney disease but I have severe right sided hydroureteronephrosis and mild of the same on the left.  So far, my bloodwork is coming back okay.  I am experiencing some high blood pressure (started monitoring today now that I have my cuff) when I went to my Oncologist appt last week.  So, if it continues to trend "high" then my next questions are if they feel if it is from the heart itself or due to the kidneys and increased pressure etc.  Not sure if they can answer and differentiate that but plan on asking regardless.  
  I do understand that CKD is a general umbrella term with many sub headings and from reading feel like I am in that category but again I will ask when I go next week.
  Yes, I would say I can be quite stubborn but attending group meetings at Hospice has helped immensely with coming to terms with it all.  To know I am not alone and can speak freely (more freely than with family), helps a lot.  I am learning a lot as I go along and share what I can with everyone on this platform in case anyone may be feeling the same way or are not aware of options etc.  
  Yesterday, I worked on a project for the kids. It was compiling all their report cards, IEP, Psycho-educational assessments, class photos, etc and organizing it for them.  It took me most of the day to do it but it is now off my list of things to do.  Next is organizing some photos.  I also pulled together my certificates of programs I have completed for my boys (I asked them and they wanted to have them kept) now that I am retired I don't have a purpose for them.  So, next is writing in a journal specifically for them as well as a couple of journals I bought to get some general info out to the two of them.  I picked up an extra copy of "I Love You Forever" to put in with their "box" as well.  I feel sometimes, so much to do but I pick away at things as I can and as I am in the mood to do them.
  So, how are you doing and feeling these days?

Strongwoman

@HoldingOn
  Saw my Oncologist in London yesterday and we discussed my kidney function and latest CT scan.  Since it was marked 'mild to moderate' hydroureteronephrosis on the left and I have severe on the right (which is a change from it being mild on the left before), we will be investigating further.  My blood pressure as of late has been high and my question was is it coming from renal (kidney) that is the root cause of it?  They couldn't answer that but suggested I go on a calcium channel blocker for my blood pressure and that we do a radiographic view of the kidney, bladder and ureters to see if the right was is or is not functioning and what the left one is doing. This would then further guide as to when to do a nephrostomy and if I need only one side or both.  They were also going to confer with my Urologist to discuss this further as well.  Long and short, we are trying to avoid doing an emergency nephrostomy due to renal failure.  Future picture isn't great but I need to know what is occurring and I believe it will guide as to what they think will happen going forward.  I will be speaking to my palliative care doctor soon as well which will help me more than anything.  We need to discuss if I do go into renal failure and the measures I will want or don't want due to it. So in my opinion a bleak outlook but nothing I can do.  

HoldingOn

I am so sorry to hear that your renal malfunction is so severe. Have they done any ultrasounds to see if there’s a blockage? Because one of my kidneys doesn’t function at all, I have a stent in the ureter of the good kidney to maintain its function as much as possible. The stent is replaced every six months because it can clog with debris and stop working. This is done under general anesthesia but it’s an out-patient procedure. I’m wondering if this is a possibility for you rather than the more serious nephrostomy your oncologists are talking about. Your urologist is probably best able to diagnose the cause of the problem and recommend a solution, so I hope he can see you before any thing gets worse. 

I’m not a doctor but if your hypertension has come on suddenly, it makes sense that it would be related to your kidney problems rather your heart. I hope in the meantime the calcium channel blocker is is working for you. So don’t give up just yet: there may be a way to restore your kidney function. I hope the consult with the urologist happens soon and a solution is found. 

As for me, I was gifted with a trifecta of problems for Christmas. I have an incisional hernia that had become painful over the last few months and was interfering with digestion and my desire to eat. Surgical repair was scheduled for early January.  Although I had the Shingrix vaccination a few years ago, I got shingles the week before the 25th. (My sympathies go out to anyone who has to suffer the unbearable pain this brings.). Along with that came constipation that still hasn’t resolved in spite of trying every remedy I know and more. It’s high up in my descending colon, right in the area affected by the shingles, so I wonder if it’s due to the nerve damage caused by the shingles. My GP prescribed Pregabalin for the shingles pain and at first I thought it was the medication that was causing the constipation so I stopped taking it: a huge mistake that landed me in crowded Emergency Rooms on three occasions in quick succession with pain so severe I was in writhing and in tears. I went in the hope they could fix something that might be contributing to the cause: the long-term constipation or the hernia that might be causing it. It turns out that severe pain is a low priority when it comes to triage and I waited for endless hours to be seen. On one occasion when after hours of waiting I saw that ten people were still ahead me I left, only to return that same night desperate for help. Again that night I watched people walk in after my arrival, be seen by a doctor, and leave while I waited for hours on end.  Eventually I was seen by a doctor and again given the same treatment I got on the last two visits: morphone but this time intravenously. The nurse then told me I could leave so I did, in a haze of opiate-induced confusion, still dressed in an exam gown under my jacket, my clothing handed to me in a bag. I was alone at 3 am in a deserted parking lot with no idea of how I was going to get home because I couldn’t even remember my address. Magically a taxi appeared out of nowhere like some golden carriage in a fairytale that would whisk me back to safety. The very kind driver recognized the state I was in and told me to look at my driver’s licence to find my address. He drove me home, bless him, and though it took me a long time to stagger to my door I was so grateful to be finally safe. 

The next day it occurred to me that the ER staff had treated me like a junkie looking for a fix. Once I had it, there was no concern for my safety. I was simply told to leave and I did. I felt ashamed. Then angry. I strongly suggest that if any one of you ever finds yourself in a position where you can’t even clearly detail your history and current situation because of overwhelming pain, make sure you have a friend or relative to accompany you and be your advocate and then get you home safely afterwards. 

And thus ends any further desire to seek real help in Emergency Rooms. Not going to happen
ever again, no matter if my GP tells me to go or friends make the suggestion. I had no idea that healthcare had deteriorated to that extent. 

The third ‘Christmas gift’ was a visit from a public health nurse whose major concern was how and where I wanted to die. That will be in a message directed at everyone who participates here since it’s something that many of us are either currently or will eventually need to address.

Meanwhile Strongwoman, hold on and don’t give up. Get your urologist involved as soon as possible and certainly before any measures like surgery are taken. I hope the medication prescribed for the hypertension works so at least that is under control while the possible cause is sorted out. 

Stay strong and stubborn: those qualities are underrated but will carry you through this new complication. 

Again, I wish you only the best and please, if you can, keep us posted on any updates. Thanks for all the support that you, like many others, continue to offer women on this page while you all face some big challenges of your own. 

I don’t participate often, particularly in the discussions when I’d really like to join in but don’t because of the the time difference. Mornings are impossible since I don’t usually fall asleep until 4 or 5 am, but I read everything in the evening when I’m more alert. 

I’m inspired by the strength and determination and the wry humour I see and then I don’t feel quite so alone with this disease that has changed so much in my life. I’m not the person I once was, but I’m not sure who this new person is. 

Strongwoman

@HoldingOn
  Thank you for thr reply and OMG what you have been through!
 Nephrostomy is my only option as the tumour is at the surgical site and affecting the ureters going to the bladder. So stents fail often almost 100% of the time in this type of situation. The urologist has recommended getting both sides done with a nephrostomy. The scan I was mentioning is to determine what is or is not working so we can decide what to do next. I don't want both sides done at the same time due to quality of life. It will affect so many things if I do have them both done. Currently we are assuming the right kidney is NOT functioning but we truly don't know. I do believe as you put, that the high blood pressure is from the lack of function of the kidneys.
 Now on to you....how horrible.  I have a ventral hernia that is inoperable due to my condition and understand your situation.
The constipation is another thing in itself. Do you take Restoralax daily or even twice a day along with something like Senokot?  
Have you connected with a Palliative doctor?
I did and they have helped me with managing a lot of things including getting a SRK kit at home so that if I do run in to trouble the nurses will come to the house and try different meds in the kit to keep me from going to the hospital. This includes injectable pain, nausea, steroid meds and more.  I also get ileus issues which are terrible and have meds that would be administered subcutaneous if needed.
I have been in your shoes with pain and the Emerg dept before I had my surgery last year. I was alone and the pain got so bad I had an outburst (which is unlike me I'm that setting) and they were ignoring me but paid attention after that. It took 2 days in hospital to get my pain under control because they didn't manage it properly from the get go.
Back to you, that must have been very scary for you but am glad you got home safely.
My nurse comes weekly now in home and we discuss what symptoms I have and sometimes we discuss how I feel and thoughts about death.  I have not signed a DNR yet but should I see that organs may be failing, I will. I have also discussed with my Palliative doctor about how I want things to go. I am pretty open about it all. 
I hooked up with my local Hospice and go to  a weekly group meeting for Palliative people as well. It has helped a lot.
Not sure if any of that will help you but hope it does.
Join in when you can. You have good insights and stories to share.

HoldingOn

@Strongwoman and all: 
Thanks for your suggestions. I’m waiting to hear from the Public Heath Team’s social worker who has the legal papers needed to formalize my status as ‘palliative’ which will then allow me to get the extra support I need. She also has the form which will allow me to legally appoint a friend to make medical decisions when I’m no longer able (in BC law dictates that only a spouse or blood-relative has this power unless a formal witnessed request is filed with the government.). I’m not ready to sign a DNR but I’m feeling some pressure by the public health nurses to do so. 

Next on my list is finding a lawyer to ensure my will is in good order and registered. And then - the one I’d like to avoid but can’t - arranging and pre-paying for cremation and dispersal of my ashes. 

Who knew dying required attending to so many details?  

As much as I’d much prefer to die at home, I sadly doubt that will be possible. So time now to explore hospices. Hopefully the social worker will be able to help me with that, although I see there are surprisingly few options in my health region. I would love to be able to go to a support group for those of us with anticipatory grief. You say that is a great help to you @Strongwoman. Friends are very supportive, but what I need to hear and say will be among those who are in the place as I am. 

So my apologies to all for perhaps dampening the “Up” everyone was aiming for in this morning’s discussion. It’s that I realize that this stuff has got to get done soon and it’s up to me to do it. Playing around in the land of denial just lets me procrastinate more and more. 

Maybe you’ve already finished these tasks and are more at ease now. Any comments or suggestions you may have about making it easier are most welcome. 

Thank you all 🙏

Strongwoman

@HoldingOn
  It's all tough. I don't have another word that aptly describes it. It is stuff you must face at some point but when you allow yourself to think it brings about a lot of emotions to process. And too agree with your statement about it all being a lot of work. 
 We signed the revisions to our wills last night. Once you get your paperwork done it will be another thing 'lifted' from you.
  I don't know your exact situation but I would ask why they are 'pushing' you to sign it. Mine know once I am aware that organ failure is imminent, mine will be signed. Or they know what my wishes are should I not be able to communicate. For here in Ontario, I believe once one is signed that if emergency services comes in, they know not to do anything and how to proceed. It is a 'project' they have started for palliative clients in the home setting. 
 Further don't apologize for how you feel. I hope you didn't join today because of feeling like you would 'dampen the mood'. You should express what you are feeling.
  Only suggestions I have are: if you have someone to assist you with things, take it; tackle one thing at a time; let yourself go through the emotions that come with any of it.  It's not easy.
  Today was a do nothing day for me as I haven't felt well all day. Not sure what is up and hope it is "passing" through and not staying. So nauseous today and abdominal pains. Hoping it is just my ileus in a milder form and that tomorrow will be a better day.
If not, I will call the nurses in the morning.
 Take care, you and hope some of this was helpful. You are doing the right things, they just take time.

HoldingOn

Thank you @Strongwoman; I’m so grateful for your encouragement (and I like the idea of celebrating with something good afterwards!)
Feels like I’ve been in a haze of pain meds forever since this post-shingles pain is lingering, but I’m lowering the dose so I can start focusing on the ‘dying well’ tasks I need to complete. Thank you too for saying it’s hard; I think I’m more prepared now.
 

I hope your pain and nausea are gone now and it was just a blip rather than a full-blown problem. Ileus, from what I’ve read, must be quite painful for you. Is there anything that helps? 

I mentioned to one if my neighbours that I was looking for recommendations for an RMT and she suggested that I look for someone who was also certified in cranial-sacral therapy. Has anybody had any experience with this treatment?  Would love to hear from you if you have. My neighbour was quite enthusiastic so now I’m curious 

Strongwoman

@HoldingOn
  How did you make out with your search for a cranio-sacral therapist?  Was there a RMT who did that as well or were you able to only find the one?  Did you go?  How was your treatment?  Just curious is all.  
  All of this is hard.  From the time you find out you have cancer until the end I still believe that statement.  I am not sure where you are in the queue but when you look 'normal' on the outside and have a war raging inside you, it is very hard for people to process and understand.  When you look sick, it is like immediate for them to process and say things but when you don't it is awkward.  But as time goes along for me, I am beyond explaining and concentrate on the living part.
  This story of cancer that we all have here is just that....our story.....so go make it what you want it to be and if you need help in achieving it, go ask for it!