Dialysis never got the chance to be really hated

[waltswife]

Like so many other caregivers my husband has a lot of other medical issues.  But when his kidneys finally failed is when they found stage 4 esophageal cancer.  So dialysis started, this was the end of July. So the center was nice, the staff professional.  We got set up for paratransit service and he gained some independence.  And it didn't seem like dialysis was too bad on him.  Nope, it didn't.  Chemo is what he hated.  So he would get chemo, and the next day dialysis would wash it out.  But the effects sure stayed with him.  And his blood work started looking bad.  And I mentioned that if it got too bad, he could stop.  Well Friday the center had to send him to the hospital, his hemoglobin was low.  And while sitting with him in the emergency room he had a heart attack.  And they told us yesterday it was only a little one.  So the talk about stopping chemo went from us discussing it to he's not going to do it any more.  And he was talking to the neph yesterday, who made it a point to stop in today while I was there, to discuss this decision.  Now this doc is a sweet guy, smart, caring and honest.  So we talked about hospice and dialysis, and if hospice was started for cancer then dialysis could continue.  And then we asked, what happens if we stop dialysis, how bad will he feel?  And the dr. had to gather his strength to tell us, he said going out from kidney failure isn't the worse way to go.  He said with hospice care it can be done gently.  That my husband will have some problems breathing, but morphine will help.  And that he will get more and more tired.  And one day he will go to sleep, and then not wake up.  This poor guy was almost as upset as I was, and trying just as hard to not show it. 

So tomorrow the other doctors want their chance to make sure my husband hears what they have to say, but my husband is thinking tomorrow will be his last time being on dialysis. 

[Angiepkd]

So sorry for you and your family!  Sending prayers and hugs!   

[Joe]

Have you in our thoughts and prayers as you go through this.

[Jean]

Oh, so sorry to hear. Please know we are here for you. When you need to talk or vent, come on and let us know. Prayers for you, your husband and your family.

[galvo]

Sincere thoughts to you both.

[natnnnat]

What a good doctor for talking so straight with you.    to you both.

[nursey66]

So very sorry. Every time we think we have it rough, someone else has it worse !!! I hate this disease !  Take care , so sad for you.

[MaryJoe]

I am so sorry to read this. Words always seem to desert me at times like this, but please know that my thoughts are with you both as you make these hard decisions.   

[Big E]

I'm so sorry that your husband (and you) have to go through this, but I agree with Natnnnat that it seems like your husband has a good doctor.

[waltswife]

Thank you all for the well wishes and prayers.  Walt decided not to quit dialysis.  He said no more to chemo, he signed a DNR at the hospital, and told the heart vascular people no chest cath procedure.  He spent 11 days in the hospital to get his PT/INR up past 2.  No one has mentioned hospice yet, so he must have time left. 

But, again, thank you all.

[okarol]

 

[MaryJoe]

   I'm glad Walt is out of the hospital. I'm always more comfortable at home than in a hospital. Hope you are both able to rest easier now.

[boswife]

this is rough Waltswife... I wish you well with prayers for strength and peace..
All the best dear lady to you and Walt

[MooseMom]

 

We are all thinking of you both and are here to support you in any way that we can.  Prayers to you and to Walt.

[Poppylicious]

*huggles*

[willowtreewren]

Hoping that things are going "smoothly." One day at a time....

 

[brenda seal]

My thoughts and prayers are with you ad Walt . I hope you have someone to help you find the courage to cope and support you through this difficult time . Brenda

[waltswife]

Just an update to what's going on with my hubby.  Spent October and most of November doing the stuff we normally do.  About November 18 he started feeling some pain, so off to the doctor, get pain meds upgraded to 5 - 10 mg of oxycodene every 6 to 8 hours.  This week it got real bad for him.  Now it's up to 40 mgs every 4 to 6 hours plus a pain patch.  Or, as the doctor said, you take what you need.  And eating is just starting to be an issue, looks like it will soon be all soft food.  So today pain is all managed, and he likes peach yogurt and eggs.

I had a talk with someone from the company that runs his dialysis center, ARA.  I don't know if this is right, just my feeling, I think dialysis kind of kept his cancer a little more manageable.  Like maybe dialysis took out some of the loose cancer cells.  And, since he's in center, getting epogen, and horrible brown protein stuff has also kind of helped him.  From what I've read on the cancer forums when some people get to Walt's point, and give up chemo they don't seem to live this long.  From my uneducated and uninformed point it's like dialysis is helping him live a little longer with cancer, without the chemo and radiation side effects.  I suggested, since she works for a big company, with a lot of doctors, maybe they could research it.  I'm probably wrong, and I am sure most advanced cancer patients would hate going on dialysis, but it just seems like something that could be looked into.  And I was kind of thinking if it helped cancer patients, and more people used dialysis, that might mean more funding for dialysis, and maybe more improvements for kidney patients? 

[obsidianom]

If eating is difficult, you could consider a feeding tube. That is what my wife uses since her stomach was damaged. It has worked well for 7 years and actually makes dialysis easier as her food is from a can and is perfectly balanced for dialyisis.  Feeding tubes are painless and easy to use. We do it all night while she sleeps(and eats). If you need more info, just ask.

[Jean]

Walts wife, I really did not want to read this post, however, not so bad. Feeding tubes are an easy way to go. My husband had one for nearly 4 months. Can he eat popsicles? they are refreshing, altho, a little chilly. I wish you both the best and will keep you in prayer.

[MaryJoe]

Like Jean, I was a little apprehensive about reading this post. I'm glad you had October and part of November to do "normal" stuff, and that his doctors seem to be managing Walt's pain adequately for the most part.  It seems like you have a really good, compassionate medical team caring for Walt and that must be some relief and comfort. I'm still searching my brain for those magical words of wisdom that would make this all easier to bear, but so far I'm drawing a blank. (There's a reason I don't write Hallmark cards for a living!) You are in my thoughts and in my heart each day and I pray you have more good days than bad.      

[waltswife]

Well Walt is signing up for hospice.  But he is going to be able to keep going to dialysis for as long as he can.  We saw his primary care doctor yesterday to have a discussion about all that is going on.  And what Walt wants.  He asked if hospice had been mentioned, and i was rambling on about how because Walt still wants dialysis it would have to be the oncologist who said Walt could get hospice.  And the Kid (what we call the primary care doctor) said, why?  Still rambling, about how someone has to say whatever he has to say but that it wasn't kidney related.  And the Kid says terminal.  You need a doctor to say Walt is terminal.  And I said yeah.  He said, OK I'll be the one to say it. 

I joined this site because I was expecting years of learning what was going on, and sharing dialysis/kidney related stories.  Never expected to be talking cancer stuff, and I don't think I should be.  But many times I found answers to other health issues here.  I think Epoman started something great and wonderful, and I am very grateful that you were all here.

[MooseMom]

Well, sometimes the "health issue" takes a back seat and it's emotional support that's needed.

I am glad to hear that Walt is signing up for hospice.  It means, actually, that YOU are signing up for hospice, too, and that's a good thing.  It frees you up to do the really important work, like spending real quality time with Walk instead of having to attend to things that are best left up to the experts.  They are trained in techniques to keep him comfortable so that he can also have more quality time instead of having to use all of his energy in fending off pain.

This must be such an agonizing time for you both, but with both hospice and IHD in your corner, I hope the days will be just a little bit easier for you and Walt.

Best wishes to you both.  You are in our thoughts and prayers.

[waltswife]

Hi.  I'm not a smart person, and sometimes too blunt and direct.  And I followed with great interest the story on this forum of John's wife and what was happening with her husband John when he quit dialysis.  My husband Walt fell down this week.  He fell on his side that is swollen from the cancer that spread there.  So he missed dialysis, and with the hospice nurse we talked about how his center would let him make up the day.  And he might feel better later in the day or the next day.  The falls kept on coming, so he didn't make up the day.  And with a lot of talk, and discussion and soul searching he decided to stop.  He has missed 2 treatments.  To me, what I see in the difference between getting dialysis and not getting it and living is, dialysis was a struggle for him.  Getting into and out of the house.  But he enjoyed seeing people and having a job to do.  But he was scared and worried and in great pain all the time.  His last treatment was 6 days ago.  He's not all doped up, but he is in bed, with pain pills when he needs them.  And he's content and at ease.  So I am frightened and miserable, he's leaving me and our family.  But he's not scared, worried or suffering so I can't be selfish any more.  I was told many times that passing away when you quit dialysis could be gentile, but I knew from John's wife they didn't have it that way.  But it is turning out that way for my Walt.

[MaryD]

May he stay comfortable and at peace with things.

Wishing you both lots of strength and hugs