How Did You Know It Was Time to Start Dialysis

[Kathymac2]

Hello to all.

If you didn't catch my introduction, I am a 66 year old woman who has had a looong slow slide into kidney failure due to PKD. I am still hanging on to stage 4 by the skin of my teeth with a GFR of 15.

I physically feel pretty good, but my guess is that I have felt sub-optimal for so long that I don't really remember how it felt to feel good.  My biggest problems are that I get short of breath when I over-exert, have mild nausea that makes brushing my teeth a trial, and feeling generally tired and not as young as I used to be. I cope with these annoyances by (1) trying not to over-exert  , (2) gagging as I brush my teeth and getting it over with, and (3) napping and doing errands, housework and such a little at a time.

I'm thinking I will be starting dialysis in the next six months or so.  I would prefer to start dialysis before I get into a situation where it becomes urgent to start, but not before I really have to. How do I know when I am at that "sweet spot".  If you started under a non-emergency situation, how did you feel physically that you knew it was time to start?  If your start was an emergency, was there a point before things got urgent that thinking back would have been a better time to start?  I'd love to hear your thoughts.

I'm planning on PD. As a side note we just learned today that my sister cannot donate her kidney due to a previously unknown health problem found during the donor workup. My brother also struck out. So dialysis, here I come.

Kathy

[kickingandscreaming]

I've been doing PD since January, but I started on my long career of D the emergency route.  I, too, was prolonging it as long as possible and felt pretty good---until the end (6%).  At the end, I came down with pneumonia, couldn't breathe, filled up with fluids and was hospitalized.  Had to do in-clinic Hemo for about a month with a neck catheter because my PD catheter didn't work, and then was finally able to be trained in PD.

In most ways, I feel better now, but certainly NOT in my stamina. I'm 74 but used to be quite fit.  Now, not so much.  Good luck on your road to D.

[Michael Murphy]

Despite my doctor telling me for over 2 years it was time I refused to start.  I kept telling him I didn't want to start, that I was waiting for a sign from God it was time to start.  I didn't tell him I felt a symptom was a sign from God.  Since I felt good I did not see a pressing need to start.  I began to see some small symptoms.  Funny taste in my mouth was the predominant one.  I began to realize my time was running out.  At the time I was a employee of HP assigned to the Federal Reserve in East Rutherford, New Jersey.  They had the best cafeteria I ever saw.  After a wonderful lunch of rare roast beef, I went back to my desk and 20 minutes later I put the lunch I ate in my waste paper basket, I decided my time was up and I called my doctor and started.  By my lab numbers I would have started two years earlier but i,had two more dialysis free years. The secret is to start prior to really pushing to far, be realistic about your symptoms.

[Kathymac2]

Hi kickingandscreaming - I've read a lot of your posts with interest because we are both older and you have chosen PD. I saw that you had your PD catheter installed and ready to use when needed, but that didn't work out for you. It never occurred to me something like that could happen, so I'm keeping it in mind for scheduling my catheter placement surgery.

I'm thinking to get my catheter placed when I get below GFR 12 and hope for the best. You know what they say about the best laid plans. 

I'm sorry to hear that your stamina has not improved, but I'm glad to get a realistic picture of what to expect.

Hi Michael Murphy - I'm glad you found my question on this pre-dialysis forum. Thank you for replying.

Yep - I'm waiting for that sign from God. I have the icky taste in my mouth and keep asking my hubby to taste things to see if it tastes funny to him too. Even water tastes weird -sharp like chemicals or something.   I don't think these minor annoyances are enough reason to start dialysis, but if like you I start (consistently) losing my lunch, I'll  reconsider.

Can I ask what your GFR was when you started?  I'm wondering if older people like me need to be more conservative with dialysis planning than younger people who may have more health reserve.

I really hope I don't offend anyone with my questions and thoughts. I know age and health-related questions can be touchy.

Kathy

[kickingandscreaming]

I'm wondering if older people like me need to be more conservative with dialysis planning than younger people who may have more health reserve.

I don't have any sense that my age played into my choices about starting, not starting, etc.  I think I was just in a huge amount of denial and I actually felt really good... until I didn't.  My name, kickinganscreaming was meant as a descriptive of just how doggedly resistant I was to the whole idea.  The only symptom I had--for years--was anemia, and that could be corrected with EPO.  Other than that, I felt quite normal.  And when I came down with what turned into pneumonia I thought it was just a cold.  And since I am asthmatic, colds can sometimes hit me hard.  So it never occurred to me --until I found that I could barely walk and had legs the size of tree trunks-- that there was something wrong with me.

There is no advantage to starting D before you need it, but some of your symptoms are telling you that the time is close.  That bad taste in your mouth is uremia.  Good luck with a smooth transition.

[kristina]

... I knew it was time for me to start the process to initiate my dialysis-treatment, when my thinking began to become a little vage and my body became very weak
and I also realized that my mind was not as sharp as it used to be and when I faced all that, I almost panicked, because I knew it was time to start dialysis (the huge unknown!!!) as soon as possible
and so I went to the Hospital Accident and Emergency, where they kept me straight away as an emergency and I had my dialysis-chest-access "installed" straight away and my first dialysis-treatment followed pretty quickly after that...
Thinking back I must say, that it was a very positive and life-saving decision, because my mind and body recovered pretty quickly after my first dialysis-treatment and I have been able to think clearly again & my body has recovered & has become much stronger again & I have also been able to continue with my life as well as is possible ... (touch wood it continues like that !!!) ...

[Michael Murphy]

I never paid attention to the numbers back then but I think it was a 8.  I will say that I felt better after starting.  Not a big improvement since I did not push it to the point of being hospitalized.  The smart thing I did was have my fistula installed as soon as the doctor told me it was time to start.  That gave my fistula time to mature and made my hemo beginning easier.  Every one is different the one thing I think makes dialysis easier is you need to listen to what your body is telling you.  If you can do that you will avoid a lot of problems.  Keep the faith,  there is new technology coming that will improve this for all dialysis patients.

[Kathymac2]

Thanks for your replies kickingandscreaming, Kristina and Michael Murphy. I have a telephone appointment with my nephrologist tomorrow. I will describe how I am feeling and go from there. I really don't want to end up in the ER if it can be avoided.  It sounds like it's possible to start dialysis without urgency but it often doesn't happen that way.

Kathy

[myporkchop]

Hope it goes well for you kathy

[Charlie B53]

For me it wasn't my labs that got me started, they were still pretty good.  My gfr was still about 20.  My biggest problem was my legs swelling and leaking  terribly every day.  A few times the site(s) would get infected, once so bad and so quick the whole leg was red like an apple.  I still didn't know anything ws wrong, only that I was freezing cold and totally exhausted.  I went to bed with all three dogs.  Wife came in later, took my temp (104.5) called the VA and they told to to get me to an er.  12 days later I got to come home.  shortly after my Dr and I decided Dialysis would get that water out of me.  Scheduled the cath surgery, went to training and got started.   # 1/2 years now.  gfr has fallen to 4.  Labs are still very good.   Lucky me.

[Kathymac2]

CharlieB3 - wow!  You really started off with a bang!  What you describe sounds very painful and debilitating. Good thing you went to the ER when you did.  Yours is a good example of why it's so important to listen to what your body is telling you rather than focusing on the lab numbers.

I spoke to my nephrologist today and she is referring me to a surgeon to get a buried PD catheter installed so I will be ready to start dialysis when needed. Not the best news, but I like the idea of being as prepared as possible.

Kathy

[Charlie B53]

Cath placement can be a problem for some people IF done too early.  Those people that produce a lot of fiberin, it can clog the holes of the cath restricting and in some cases totally stop the flow so when it comes time to use the cath it fails.  Kicking and Screaming had such a problem.  There is no way to tell before hand who will be a great fiberin producer.  As with most all things there is a certain amount of risk.

No if your cath isn't totally buried, and flushed with regularity, that make make a major difference.   It is very hard to know.

I started so early simply to remove so much excess fluid to reduce the massive leg swelling and subsequent leg infections.  And it has worked beautifully.

[Fabkiwi06]

I started with an emergency due to me being young, naive, and assuming this would be a problem when I was "older". Heh...

In hindsight, I would have started about a month to two months before my ER visit. I was SO tired all the time, no appetite, itchy, and generally miserable. I passed out once in the extreme Southern heat (NEVER had done that before). No clue what my labs were at that point.

Never had any of the more common symptoms of failure... didn't start getting puffy until after I started dialysis (that has since gotten under control). Never had any pee problems. Never got jaundiced. All of my above symptoms were explained (so I thought) with things like stress, flu, allergic reactions to soaps, depression... it wasn't until I went in to the ER that all the pieces started getting put together. Really wish I had been a little more aware of things...

[Kathymac2]

CharlieB53 - when my nephrologist brought up the buried PD catheter I mentioned kickingandscreaming's experience with the fibrin clogging her tube. My doc said that her hospital's experience is that the buried catheters work 93% of the time.  I'm going with those odds because I really really don't want to start dialysis with a crash if I can avoid it. I have responsibilities at home that make it very difficult for me to be hospitalized for any length of time without calling in friends and far-flung family to help. I'm trying to save those calls for help for when I get my transplant.

Hi Fabkiwi06 - I can totally understand how you thought your symptoms were due to the flu, allergies etc.  So sorry you felt bad for so long before you got help.  They say that hindsight is 20/20.

I appreciate your post and I will try to learn from it.  Like you, I think I tend to downplay health problems.  Not always the best way to go.

Kathy

[cattlekid]

I had kind of a weird situation.  I knew for 10 years that I had IgA nepropathy, who knows how much longer I had it before it was confirmed via kidney biopsy.  For those 10 years, I dutifully went for blood work and saw my primary care doctor and nephrologist every six months.  My creatinine was stable at 1.2.  It would spike a little in the fall but never go above 1.5. 

Then all of a sudden, I started having migraines.  I went to a holistic pain doctor because my PCP just wanted to try very expensive meds.  I wanted a real answer.  He talked to me for 90 minutes and at the end, he asked if I had a recent 24 hour urine collection.  His comment was that the blood work wasn't a good indicator, the 24 hour urine collection was better. 

Well, my creatinine was somewhere in the range of 8-9.  His nurse called me with the results in a screaming panic.  I called my nephrologist, who immediately had me in for another biopsy.  The IgA nepropathy had flared like wildfire.  Everyone was distraught.  My nephrologist wanted to fling himself off the roof of the hospital.  We were all hoping it was acute and would calm down.  I went for twice weekly bloodwork for about six weeks before I couldn't take it any longer.  I was always out of breath and exhausted, plus I was full of fluid and constantly nauseated and without an appetite.  I called the nephrologist on Monday, January 24th 2011 and started dialysis the next day with a chest cath. 

Looking back, I don't know if there was anything that I could have done differently other than maybe had a fistula placed years prior than when I needed it so I wouldn't have had to deal with the chest cath. 

[Kathymac2]

Hi cattlekid - what stands out to me in your post is that the health professional who took the time (90 minutes) to get your complete health history was the one who got you on the right track. The current way Western medicine is practiced doesn't allow enough time between doctor and patient for the doctor to understand clearly what's going on with each patient. Also, each doctor has far too many patients. Doctors have to fall back on lab tests, imaging studies etc to make diagnoses.

I'm getting the picture that most times the start of dialysis is urgent and unpleasant due to the patient feeling like crap.  You would think some effort would be made by health professionals in the field of nephrology to find a way to make the transition to dialysis easier.

It doesn't sound to me that you could have done anything differently. You even went over and above by seeking a second opinion regarding the cause of your migraines. I guess we just have to acknowledge that sometimes life is unfair and difficult.

Kathy

[Simon Dog]

A bit off topic, but the "trust woes" illustrate why anyone who plans on dying eventually and has non-trivial assets should arrange for the funds to be in a trust that transfers immediately on death (totten trust/payable on death bank accounts, etc.).    It's also practical to put a house in trust so it transfers to your heirs outside of probate.   Plus, there are tricks (other than gold hidden in your house) to shield some of those assets from the nursing home industry.

[kickingandscreaming]

Plus, there are tricks (other than gold hidden in your house) to shield some of those assets from the nursing home industry.

Were you a lawyer in your previous incarnation (pre dialsysis)?

[LorinnPKD]

"I'm getting the picture that most times the start of dialysis is urgent and unpleasant due to the patient feeling like crap.  You would think some effort would be made by health professionals in the field of nephrology to find a way to make the transition to dialysis easier."

My nephrologist definitely wanted me on quite a bit sooner than I actually started.  It had been a while since I had gotten labs done, so it was a surprise to discover I was well into Stage 5.  At 6% and a creatinine of 6.7, she was ready to send me to the hospital right there and then to install a chest cath. Her thought was that starting then would help me keep my energy up and rebound a little faster, and I am 100% sure she was right.  And she was alarmed by the numbers, but I'd grown up with a parent who went through this and the mantra was that it's not always the numbers -- sometimes it's just how you feel. So I decided to wait, even then.

With PKD, most of my other numbers were OK: I was still able to pass fluids, so I wasn't getting swollen. Potassium was fine.  Phosphorus was high, but manageable with binders.  It was really important to me to get and use my fistula for hemo.  So it was nearly three months between that YOU HAVE TO START NOW meeting with my neph and actually starting.  That decision was entirely mine, which is as it should be. I really, really didn't want to start with a chest cath because my dad had had some longterm issues due to his.  And to be perfectly honest, I was still wrapping my head around my situation and I needed that time to accept it.

By the time I started, though, I was getting pretty weak -- I'd get super winded going up the stairs and it was impossible for me to take my dog for a walk.  I managed to keep most of the nausea at bay by eating really, really gently, although toothbrushing was something I'd have to wait for mornings and evenings until the nausea subsided. Brain fog ruled (and still affects me to some degree).  When they finally plugged me in, I felt really grateful and more than ready for it because I was sick of feeling so sick.

Had I been retaining fluid, I would have gone with the chest cath that day, no question. 

Dialysis really did help.  Because my decline was so gradual, I'd forgotten what it was like not to have nausea, not to be tired all the time.  So a vigorous toothbrushing my first week was like a revelation.  I don't have energy all the time, but when I do, it's enough to feel almost normal.  I still sleep a ton and the brain fog is persistent, but in general I feel better than when I did when I was waiting and even before I realized I was so sick.

So the right time is really such personal choice.  Starting when you still feel pretty OK may help with an easier transition.  But starting before you feel somewhat resigned to it can be a shock.  The techs at my clinic say that some people start on an emergency basis and are sometimes pretty angry at this turn of events.  I feel fortunate to have had the time to mentally prepare for it and be ready to start.

[Simon Dog]

Were you a lawyer in your previous incarnation (pre dialsysis)?

Negative; software design and large scale storage systems.

But, I sue for a hobby and read lots of briefs.  On track to writing about $50K to $100K in checks from my 501(c)(3) to attorneys this year.   When my wife is not doing RN work or teaching, she is preparing her expert witness reports for various trials.

[Kathymac2]

Hi LorinnPKD - I'm glad you were able to wait the time necessary for your fistula to mature and that you were able to start dialysis when you were mentally ready. I know it's not easy for me to accept the idea of dialysis and I've had almost 50 years to mentally prepare. It must be so difficult for a person when the diagnosis of kidney failure comes as a shock.

Simon Dog - you may be commenting on the wrong thread.   I haven't seen any discussion of "trust woes"  on this thread.

Kathy

[Simon Dog]

Yup, wrong thread.   Ooops.

[Charlie B53]

Yup, wrong thread.   Ooops.

LOL   I often get lost, I think of something that I should have included in a response, then cannot find that thread.

I blame it on having more of those 'Senior Moments'.   They are beginning to happen with far to much regularity lately.

[Tkski]

Hi Kathy, I too have PKD and currently am at 10%. It's been holding steady there for a few months. I'm the "fortunate"  one of the family, I'm only 48 yrs old. My aunt was 55 when she started Dialysis, Mom was 68. It is what it is, I say. I know that I am very blessed after reading some of the folks here and their symptoms. My biggest side effect is the tiredness and once in a while I have that feeling of getting sick if I eat breakfast. Other than that, nothing. My fistula is well matured and ready to go. I know that I'm close, I honestly didn't think I'd make it through the summer. The best of luck to you.

[Kathymac2]

Hi Tkski,

It sounds like you have things well in hand.

My family seems to have a version of PKD that gets bad later in life. My mom started dialysis in her 60s.  My mom's mom died from kidney disease that we think was PKD.  I also feel very blessed to have gone so long without the need for dialysis and feeling fairly well.  I'm the "lucky one " in our family too and I'm so glad my brother and sister were spared this health problem.

Best of luck to you too. Here's hoping for lots more time feeling decent with stable kidney function.

Kathy