Starting Dialysis? Need input on discussion & timing!!

[Black]

We, Mike and I, have an introduction appointment in Charleston at DCI on Nov 6.  We'll spend about an hour with the NxStage training nurse, about a half hour with the finance office, and briefly meet the social worker.  Mike is having blood drawn in a week or so, another neph appointment 10/31.  Since the decline in his kidney function has been accelerating and been so low for so long the training nurse wanted the past 8 months of his blood work and file notes faxed now.  So, he has to make another trip by the nephs office to sign the release.  (Why do they need a separate release for each health care provider? )  We'll take the latest info from the 10/31 visit with us when we go.

I know he wants to put off dialysis as long as possible.  In his shoes I probably would too.  BUT, I'm afraid if he does not go ahead and start by early Nov, then he may be forced to start around the holidays.  IMO, that's not really a  good idea under the best of circumstances.  In our situation it could be disastrous financially.  Between Nov 15 and Jan 15 I have between 35 and 50 dogs coming and going for boarding, in addition to the grooming clients, and a few cats -- it's probably more than 20% of my annual income.  I have no employees -- I work alone.  If I have to call clients at the last minute to tell them I can't keep their dog/cat it will be impossible for them to get in anywhere else.  What will they do about their holiday travel plans?  What will happen to their dog?  What will that do to my business?  Mike isn't working and the income from my small business is what's paying the bills.  Taking time the first part of Nov is already going to cost us more than our mortgage payment!  Any time later than that could be a financial disaster for us, and even more so long term for my business.  I don't need the bad word of mouth that says, "Yeah, she's really great with my dog, but she has a sick husband and she's not dependable.".  Y2K cost me big time; 9/11 didn't wear off for almost a year -- people don't travel they don't need me.  My younger brother had a rare form of renal cell carcinoma and died in 2002 - five trips to FL in 6 months.  My business is just now recovering and starting to consistently meet or exceed all previous years.

I haven't mentioned any of this to Mike and I am reluctant to do so because I do not want him to feel pressured even more than he already does.  He may have already thought of this but he hasn't mentioned it.  Maybe because he is optimistic and thinks he can wait until after the holidays?  He has about 10% function and the decline has been accelerating.  I'm debating with myself -- should I mention all of this now and give him time to think about it?  Should I wait until we get the results of the blood work in the nephs office on 10/31?  Should I wait until we're discussing this with the training nurse on 11/6?  Or should I wait until were on the way home from the visit?  Or should I just pray he can hold on until after the first part of Jan.  I know there's no good time for bad news, but I really want input from those of you who have been there and had to make decisions like this.  What would your want your spouse to do in that situation?

Now that I think about it, I think I need to move up the date for the visit to Charleston -- I already have reservations for dogs the last two weeks of November which I may have to cancel if training for me takes more than 10 days.  Oh God, I hate this and we haven't even started yet!

[Rerun]

Ten percent function is okay.  When he starts puking after every meal then you need dialysis.  They don't like you to get that sick, but if he isn't feeling ill, then he can wait.  Just my opinion .   

[Black]

 

[jbeany]

I understand how complicated it can be - it's not just about health issues, even if that's all the doctors see.  I've been having the same argument with my nephrologist.  He wanted me to start back in August.  I refused then.  Not only was I still feeling fine, but the logistics of starting then were impossible.  We live in an area where the main source of income is the tourist season in the summer.  All of my family and friends work at least a 70 hour week during those months.  My husband was working two jobs and running a computer business of his own, and we only have one car between us.  There would have been no way he could have started training for home hemo then, and the only way I could have gotten to the center for regular treatments would have been a rather unreliable little local transport service.  So I am just now getting started in the process, now that all the tourists have gone home.

I still feel fine, and I've got about 12% function left.  My doc was far less concerned about my % of function though.  What he was really worried about was the acid levels in my blood.  He was more worried about what the long term damage could be to brain and body functions if the carbon dioxide levels were too high for too long.  Another thing my doctor asked me to think about was my immune system.  With my kidney function that low, even a simple stomach flu could become something my body is incapable of dealing with, and I might end up hospitalized.  My doc convinced me that I need to get started on the process while I was still capable of being an active participant in it, instead of waiting until I was so sick it was just something that they did for me.  You might want to talk about some of those concerns with your husband as well.  They might help him to decide to start now, instead of waiting until it becomes an emergency.

[Black]

Ten percent function is okay.  When he starts puking after every meal then you need dialysis.  They don't like you to get that sick, but if he isn't feeling ill, then he can wait.  Just my opinion .   

  Rerun, but he feels ill now.  He used to wash my car, his truck, and his motor home (that he used in his business) in one afternoon.  Now it takes him four days - one for my car, one for his pickup, and two for the motor home, and he usually takes a day in between.  He used to do our yard (2 1/2 acres) in one day, including several hours with the weedeater.  Now he takes two or three days on the riding mower, and he pays a kid to use the push mower and the weedeater.  The last time he did any physical labor, several months ago -- about half an hour of moving some boxes of stock around in the back of his stock truck -- he had nausea, vomiting and diarrhea for several hours during the night.  The extent of his physical activity right now is doing his own cooking, some minor shopping or vacuuming one room, and walking his Shih Tzu.  I worry about muscle atrophy as much as I do about the long term effects of the high level of toxicity.

I guess we'll discuss it in the nephs office, but the things beyond his actual health will have to be weighed also.  I just worry about making him worry more than he has to right now.

[Black]

... I still feel fine, and I've got about 12% function left.  My doc was far less concerned about my % of function though.  What he was really worried about was the acid levels in my blood.  He was more worried about what the long term damage could be to brain and body functions if the carbon dioxide levels were too high for too long.  ...

Metabolic acidosis is common in renal failure and does have health implications, but it has a huge impact in PKD patients as it is thought to accelerate the growth and multiplication of the cysts, which hasten the kidney failure.  My husband takes bicarbonate of soda  to prevent it -- 1,300 mg twice daily.  He also takes lasix twice daily to compensate for the extra sodium.  If I recall correctly the CO2 level should be between 20 and 32, but it is better to keep it above 24.

If you have not yet done so, the following links may be helpful in discussing the treatment of metabolic acidosis with your neph.

"...Serum electrolytes, hyponatremia, hyperkalemia, and low serum bicarbonate concentration due to metabolic acidosis are manifestations of glomerular and tubular dysfunction among patients with PKD...."

http://www.emedicine.com/PED/topic1846.htm


"... Early renal failure

Treatment of chronic metabolic acidosis in persons with renal failure is indicated for the following reasons:

It can help prevent bone loss that can progress to osteopenia or osteoporosis. In children, growth retardation can occur. (For more information, see Osteoporosis.)

Treatment slows the progression of hyperparathyroidism (see Hyperparathyroidism).

It helps reduce the high-protein catabolic state associated with uremic acidosis, which leads to loss of muscle mass and malnutrition.

NaHCO3 is the most frequently used agent. It is administered in an amount necessary to keep the serum HCO3- level greater than 20 mEq/L. The average requirement is approximately 1-2 mEq/kg/d. Sodium citrate should be avoided if the patient is taking aluminum as a phosphate binder because citrate increases aluminum absorption and, hence, the risk for aluminum toxicity. ..."

http://www.emedicine.com/med/topic1458.htm


"...In certain circumstances, sodium bicarbonate (baking soda) may be given to improve the acidity of the blood...."

http://www.nlm.nih.gov/medlineplus/ency/article/000335.htm

[Zach]

If I recall correctly the CO2 level should be between 20 and 32, but it is better to keep it above 24.

You may want to check NxStage about what their patient's CO₂ levels tend to be.
NxStage uses Lactate as a base instead of Bicarbonate.  I don't know how the difference affects a patient's CO₂ levels.

[jbeany]

Okay, we're wandering off of Black's original question - but I have renal failure because of type 1, not PKD, so cyst growth isn't a concern.  And given my extremely high blood pressure, (currently under control only with massive doses of multiple meds) I can't see my doc prescribing anything with sodium in the name. I don't think he can offer any other treatment that would help the acid levels without messing up the meds I'm on that are already working well.  (I'm already on phoslo, aranesp, iron infusions, and a list of meds so long I have to carry a typed out sheet with me 24/7 to keep the dosages straight.)  I've got two very good docs.  If there was anything else they could do to improve my health, they would have done it.

That, I guess, brings us back to me being in same situation Black's husband is in.  Only I've already made up my mind to start while I'm still feeling reasonably well, and while the timing is right for my husband and while the weather is still good enough that we can easily travel to the center for training. 

Black, I think deciding to start was actually scarier than the first step I had to take to get the ball rolling.  It's really hard to admit to yourself that you need to do something as drastic as dialysis.  but chronic illnesses don't exist in a little reality of their own - they keep overflowing into all the mundane, everyday things like bills and house cleaning, and whose turn it is to feed the cat.  I think you should talk to your husband about your concerns about the business as soon as possible.  You said in your post" He may have already thought of this but he hasn't mentioned it.  Maybe because he is optimistic and thinks he can wait until after the holidays? "  Or maybe he thinks putting it off will be better because he's worried about you having to deal with it, not just him.  You won't know unless you ask him, and I don't think not talking about the problem will help either of you in the long run.

Okay, just my opinion, and free advice is worth as much as you pay for it. . . .

If all else fails, ask him to sit and read this entire post!

[billable]

Black, I just went through the same thing with my wife.

You can check out my introduction for the whole history, but we just finished our nxstage training 4 days ago.  My wife and I have worked together in my business for the last 10 years.  When she started getting weaker a couple of years ago, I started cutting back on clients because I just couldn't get around to everything.  I wanted to hire someone to help (my wife was doing all the bookkeeping for our customers) but she felt that I was replacing her.  Would have made much more sense, but I relented and gave up about 2/3rd's of our income rather than have her feel like I was pushing her out.

Anyway, my suggestion would be discuss it with your husband just the way you explained it here.  Tell the DCI people your concerns and ask if you can start sooner.  The training is supposed to last 3 weeks, but you can do it much shorter.  They will go by how fast you learn it, not by number of days training.  Educate yourself on as much as you can now.  Ask them for study material to learn before you go. 

Your husband won't even realize how much better he will feel until he starts.  Be honest with him about how you feel and your concerns.  Once I was honest with my wife things went much better.  She was in denial about how sick she was and she couldn't make the right decisions until she accepted the fact that she was really sick.  Her fight and drive are admirable qualities and I wouldn't do anything to destroy that, but you also have to be honest and realistic with yourself and your spouse.

Good luck,

Bill

[BigSky]

I would bring your concerns up with him.

From the sounds of it he is pretty much too sick to do much and when he does do stuff it just makes him sicker.

He is merely putting off the inevitable.  The sooner he starts dialysis the sooner he will feel better.  It can take some people a few weeks or more to fully adjust to the effects of being on dialysis.  I would think its better to start now and feel better by the holidays rather than to get stuck in the hospital over the holidays.

[Ohio Buckeye]

I'm on PD and it's different but my feeling was that I
didn't feel that bad yet and I would have to be crawling in before I was
ready to start dialysis.  But, a man at church who has had a transplant now, told me
how he woke up so sick one day he could not get out of bed, was taken to the
hospital and started on emergency dialysis. I didn't want that to happen to me
and my doctor told me that when you become so very ill it can be hard to reverse it
and sometimes takes a long time. So I reluctantly agreed with many tears.
I'm glad I did now.

     

[AlasdairUK]

If the fistula is mature with no complications (it was created 1/06) . I would start sooner rather than later. You do need to enter the grey area first where dialysis would be of benefit. If you have reach that position I would start HD. This helps stabilize the body with fluid, Blood pressure, toxin levels and hopefully get your HB levels and EPO sorted out. If you wait to long it may take longer to become stable.

I'm on PD and it's different but my feeling was that I
didn't feel that bad yet and I would have to be crawling in before I was
ready to start dialysis. But, a man at church who has had a transplant now, told me
how he woke up so sick one day he could not get out of bed, was taken to the
hospital and started on emergency dialysis. I didn't want that to happen to me
and my doctor told me that when you become so very ill it can be hard to reverse it
and sometimes takes a long time. So I reluctantly agreed with many tears.
I'm glad I did now.

 

I appreciate how timing can be unfortunate, but you are dealing with your life. You can try be proactive about the timing, but when it is time you have to go. What else can you do?

When my original kidneys failed I did not know what was wrong and went to hospital on a Friday night after being sick for a week at home. They then kept me in for overnight observations not knowing what was wrong. I then woke up on Tuesday with a Quinton line in my chest.

When my transplanted kidney failed I also waited as long as I could and my HB dropped to 7 (I think America uses a factor of 10, so it would be 70). I wish my hospital had been more proactive in starting my treatment sooner. I never got sick, but my creatine was 1500 and my urea was 45. In hind sight I wish I started a month earlier or at least given EPO sooner to stop my HB dropping.

[Black]

I cannot thank all of you enough for all of the excellent advice.  It  has helped make the decision process much easier.

We had the conversation in the neph's office on Oct 31.  Neph said that a creatinine of 6.3 is not high enough to qualify for Medicare (I think he's wrong) and that since he still has a good appetite, not vomiting or diarrhea, and his other blood values are still near normal range -- wait another 4 or 5 weeks and have blood drawn again.

We went to the dialysis center today, and the dialysis nurse said a GFR of 10 does qualify for Medicare coverage and that it is also low enough that he could have started dialysis today.  She also said that since he will be training on the NxStage that he needs to start ASAP, while his mind is still clear enough to absorb the information and keep the steps in order, etc.  Totally contradicting his Neph! 

BUT, when they checked his fistula they said it is not good!  A small side vein has apparently, over the past few weeks, expanded to the point that it is draining the fistula vein too much.  Instead of one very large vein, he has a Y with one large side and one small side.  Because the fistula is deep this doesn't show until you apply a tourniquet.   They suggested that it would probably be a simple matter of tying off the side vein, and that if that is the case, it should be useable two weeks after.

I called the vascular surgeon's office with the news -- Mike has an appointment Friday morning for evaluation and was instructed to bring the ultrasound pics which were done before the fistula surgery.

IF everything goes quickly and well, we may be able to get the NxStage training out of the way before Christmas.  If not, then we'll start after the first week of Jan.

At first, the training nurse said she needed me to be there everyday, 5 days a week, for three weeks.  After I explained the financial implications of closing my business for three weeks she said I would have to be there the first week, and then on the other weeks, just Tues, Wed, and Thurs.  (Whew!) This will allow me to still be there on the weekends for the majority of my clients, and my husband's cousin will not have to "house sit" and take care of our dogs for so long!!!  BUT, I'll be making the 3 1/2 to 4  hour drive twice week, and Mike will be there on the weekends, and two weekdays, by himself. 

But, hey, what can I say -- they assured us that the lack of insurance is no problem and
we're getting a NxStage!!

[charee]

What great news that you can start on nxstage, hope all goes well for you both.

[Rerun]

Great news!  I'm sure all will go well.  But, yeah, get that vein tied off asap so it can heal.