Scared for my momma

[KimberlyG86]

My mom is a type 2 diabetic and has had kidney issues all her life. I remember her saying when she was 9, the doctors told her that her kidneys were bad. A little over a year ago my moms doctor referred her to a kidney specialist. Her function has went from 17, to 30(weird, right?), to 24, then on Monday down to 21. The doctor has only been seeing her once every 6 months. He says when she gets under 20 they will start talking about options, then get that fistula or what not. I’m so scared for her and am obsessing over what she should and shouldnt be eating, I keep looking up stuff on the internet and educating myself on everything I can related to kidney disease and starting dialysis. It’s making me sick lm worrying so much. She is the type of person to just wait until the doctor says it’s time. She was within all the ranges on her numbers this last time but her function is still getting worse. She’s not swelling or anything or showing any symptoms other than some fatigue, I think. She likes to take naps and has for many years, so it’s hard to know!


1 question, we have a family vacation coming up in March for spring break. We mentioned it to the doctor and he didn’t seem like it was an issue, but what if something happens? Do you think it’s safe to go on the cruise with her numbers getting so low? I want her to enjoy this trip because she may start dialysis soon but I’m scared for anything to happen and we be in Jamaica or Mexico and she need to start.

[Cupcake]

plan for a successful cruise, cause you're right, she needs to have a vacation. but buy travel insurance that includes transporting her home if necessary or any last minute cancellations.

I would ask her nephrologist for a referral to a renal dietician-can give you more specifics on what she should be eating and also make it seem more 'real' to her. She may be taking it more seriously than you think, but puts on a brave face to save her family from worrying. I know, its not working!

Also its not unrealistic to ask the nephrologist to repeat her labs sooner than 6 months. Nothing predicts how fast/slow kidneys fail, and its not usually linear and you see when it hops all over. But it can be reassuring before you leave on a trip that she is still stable.

Best of luck and enjoy that cruise!

[KimberlyG86]

Thanks for that advice, I will look into insurance on the cruise, I hadn't thought of that!

I wish I could get her to go back to the doctor between now and her next appointment but I don't think she will go and would get upset if I suggested it. She likes to take what the doctor says as the gospel and unless something really bad happened between now and then, she wouldn't think it was necessary to go, if he said wait 6 months. It frustrates me because I worry about her so much. There is only so much I can do though.

Thank you!

[Charlie B53]

Kidneys rarely ever get better.  Function declines at a pretty steady rate however there are many things, infections, drug treatment, that can accelerate the kidney failure.

Knowing that her kidneys are failing can be far scarier than the actual kidney failure.  Fear of the unknown is huge.  This is why education, learning as much as possible helps ease so many of those fears for both of you.

kidneyschool.org has a self-paced series of learning modules designed to teach you a lot of what you both need to learn.  It covers many things all related to kidneys. 

Diet is very important as a Renal Friendly diet will reduce the workload placed on her kidneys.  Not working so hard they may last much longer before needing Dialysis.

Fluid control, here again, reduce the workload.

Does she drink soda?  Dark soda's are a huge NO-NO as they are high in phosphorus.  A serious amount of work for her damaged kidneys.

There are many that avoided Dialysis until under 10% function, still without symptoms requiring treatment.  Not everyone does so well.  I myself started at 20% as my legs were swelling so terribly, leaking, getting infected and landing in the hospital repeatedly.

We are all just a little different so while we may be going through much the same things the timing can be far far different.

Enjoy the cruise.  Mom should be fine.

Avoid Starfruit.  Some tropical buffets have a yellow fruit somewhat shaped like a star.  Do NOT let Mom eat any of this fruit.  It is fine for normal kidneys but those of us with reduced function it can be poison..

Other than that one thing the cruise should be great.

Take Care,

Charlie B53

[iolaire]

Welcome to the group. I’m glad your mother has you thinking about her and how to prepare for dialysis.

For people with slow kidney decline it doesn’t seem like there is an abrupt time that all the sudden the patient immediately needs dialysis.  For many of it’s a slow decline where you progressively feel more warn out and generally more crappy as time goes on. Many of us with slow kidney failure are told by our nephrologists that we will know when it’s time to start because we will feel so bad that we realize it’s time to start dialysis to feel better.

Because of that I think you and your mother should know pre cruise if it’s time for dialysis and if she can complete the trip or not. So the dialysis should need should not crop up mid cruise but there is always lots of medical risks so  get the travel and cruise cancellation insurance. 

[KimberlyG86]

Thank you Charlie B!

She doesn't drink dark soda much, maybe once every 3 months or so, but hardly ever. She drinks water, coffee, and tea. I have seen that coffee and tea aren't good, I don't know if I can get her to quit though. I try to look things up and educate myself, but she becomes upset sometimes when I try to tell her what she should and shouldn't do, informing me that she is capable of taking care of herself. Sometimes I wish I woulnd't worry so much.

She doens't make horrible decision with her diet, but I know they could be better. I'm just scared. Maybe I need to back off and realize this isn't my health. It's just so hard and I want her to be as healthy as possible. I think she believes things are okay right now and she doens't think dialysis is quite as close in the future as I do.

I will try to tell her about the starfruit, that's really scary. Thank you.

[KimberlyG86]

Thank you iolaire!

I def think it's a good idea to start looking into insurance for the cruise. While I know it's a lot of money to go to waste, I'll gladly lose the money spent on it, I just don't want there to be a situation where were on a ship and need to have an emergency evacuation or be sent to a different Country for medical attention. I also know we'll be using our birth certificates to get on and off the ship, because that is all they require, but if there was a medical emergency and get stuck in another country we wont have passports. These are all things I'm obsessing over and wouldn't dare tell her just because she will tell me I'm being ridiculious. We've been planning this family trip for 2 years now and her kidneys have started getting worse only the last year. I just almost don't know if I can have a good time on it now, I'll be so worried. 

[MooseMom]

You should be able to buy travel insurance through the cruise company, but if you don't want to do that, you can find travel insurance online.  I personally use Allianz. https://www.allianztravelinsurance.com/?msclkid=daa28385402015c54914df90e8b9ee71&utm_source=bing&utm_medium=cpc&utm_term=allianz%20travel%20insurance&utm_content=&utm_campaign=Brand%20ATI

However, your mother would be considered as having a pre-existing condition, and I know that with Allianz, you must pay for the insurance within two weeks of booking/paying the first deposit on a trip.

Whichever insurance policy you look at, you absolutely must read the policy wording to see if your mother would be covered for medical expenses incurred.  Good luck!

[Michael Murphy]

My mother had a heart attack on a cruise to Alaska while the refund for part of the fair was nice,  they arranged for a nurse to accompany my mother from Alaska to Albany New York in first class seating with oxygen.  That return trip would have cost a fortune and probably would have involved me flying up to Alaska and flying back with my mother.  All told the extra insurance was a god send.

[kristina]

My mother had a heart attack on a cruise to Alaska while the refund for part of the fair was nice,  they arranged for a nurse to accompany my mother from Alaska to Albany New York in first class seating with oxygen.  That return trip would have cost a fortune and probably would have involved me flying up to Alaska and flying back with my mother.  All told the extra insurance was a god send.

Reading this I just remember how some years ago my husband and I booked our flight to the Continent and for very little money my husband also bought a travel-insurance for both of us and I was quite surprised, because I could not imagine what could possibly go wrong ... Well, it did go wrong in a big way ! The crew on our return-flight staged a crew-strike  - I forgot what it was all about  -  but all passengers had to stay through the night in the Departure-lounge, except for us both  :  because of our travel-insurance we were offered a first class Hotel room for the night, we were also woken up in time next morning and then we enjoyed a wonderful first class Hotel-breakfast and very special treatment on our return flight. All that really helped such a lot, because most of the other passengers had to sit on seats or lie on the floor all through the night and for me in ESRF that would have been the unthinkable, but, the Hotel rooms in their prime position happened to be extremely expensive.
So, to buy one of those travel-insurances, especially when in ESRF etc. is a very good thing, hopefully it won't be needed, but when it is needed, it is certainly priceless  ...

[Michael Murphy]

I have written this before people and doctors put to much reliance on lab results.  What is a better indicator of when to start is how the patient feels.  Feel good dialysis may start shortly but not today.  Labs are a good indication that dialysis is in your future but as to when to start not so good. If your mother is feeling fine and the doctor said to return in 6 months I would bet he thinks the time is coming in the next year or two.  Two years before I started my doctor had me come in monthly for lab tests and a visit with him, 24 times I heard him tell me it was time to start, 24 times I told him I was waiting for a sign from God.  He thought I was crazy but he never asked what I thought a sign would be, my answer would have been a symptom.  Yes finally I had a symptom, it was a bout of nausea and vomiting at my job, called the doctor and to his surprise he scheduled me to start that week.  As far as travel if your mother feels good I would go for it those last 2 years before dialysis were like the last warm day in September.  Wonderful. Have your mother enjoy he non dialysis time. The only caveat I would add is have a fistula created asap since starting dialysis with a mature fistula is signifiicantly easier, and even if you choose PD it’s a good backup like a spare tire if you never get a flat it’s still a good idea.  Finally my advise is help your mother enjoy the predialysys time she has cause after she will be committed to a fixed schedule which makes fun some what more difficult.  However there is a member of this site Bill Pelham who took a nexrstage machine rafting down the Grand Canyon a picture of him sitting on a raft doing Dialysys in the middle of the canyon.

[UkrainianTracksuit]

Just adding in with the voices that suggested travel insurance. It is a definite.

However, MooseMom is correct, in that having a pre-existing condition complicates the insurance situation. It also makes it more expensive but, peace of mind is priceless. (Well, not really peace of mind, but a back up in case things take a negative turn.)

Now, I’m not American, but in the instances that I bought travel insurance, pay attention to the fine print. In the case of ESRD, there will be exceptions to coverage and they want periods of stability before they allow coverage.

This is an old story but it shows we must be vigilant in how policies are wrote:
https://www.cbc.ca/news/canada/british-columbia/retired-couple-billed-50-000-despite-travel-insurance-1.1056603

And another example:
https://ca.news.yahoo.com/blogs/dailybrew/canadian-seniors-face-thousands-medical-bills-travel-insurance-221513292.html

Like I said, different systems, but the message is the same: know your policy inside and out.

After that scary stuff, I think it’s a good idea if your mom could have her blood work run again. Obviously sanctioned by her doctor! That would set you both at ease (a little bit) to enjoy the cruise.

If she’s hovering around 20% and feeling pretty good, enjoy the trip. If her stats are in generally good ranges (potassium etc) and she feels good, she’ll be fine, unless something outside (a virus, food poisoning) happens. Once on dialysis, planning gets more complicated and there is less drive to travel in general. Good luck and take care!

[Paul]

1 question, we have a family vacation coming up in March for spring break. We mentioned it to the doctor and he didn’t seem like it was an issue, but what if something happens? Do you think it’s safe to go on the cruise with her numbers getting so low? I want her to enjoy this trip because she may start dialysis soon but I’m scared for anything to happen and we be in Jamaica or Mexico and she need to start.

Of all the things you can do to your mother at this time, the worst thing you can do is go about cancelling "good" things. Seriously - consider "talking your mother out of this holiday" to be as bad as "kicking your mother in the face" or worse. Dialysis is one disappointment after the other, adding to those disappointments is very very bad. If you look through the archives of this site you will see that occasionally we have to deal with a member seriously considering killing themselves because of what they have lost by being on dialysis. DO NOT ADD TO YOUR MOTHER'S LIST OF LOSSES, it will simply make a bad thing worse.

Rather than looking at reasons for cancelling treats, look for ways of giving extra treats to your mother. The biggest thing she needs you to do now is cheer her up. She is about to have her life changed. Dialysis will save her life, but it will also reduce the value of her life. Look for things that will make it better, things that will make her happy.

Oh, but don't overdo it. I had a serious non-kidney related problem a couple of years back that nearly killed me. Some members of the family overdid the kindness to the point that it began to feel like they were doing the "final wish" thing, you don't want your mother thinking that.

I have seen that coffee and tea aren't good, I don't know if I can get her to quit though.

Coffee is bad, tea is OK though (provided she watches her total liquid intake). In most British dialysis centres the nurses feed you tea during dialysis.

As to coffee, it is bloody hard to give up. I know! The dietician says I can get away with one cup a day. Sometimes I slip and have two. My bloods have always been OK for potassium and phosphorus. One hint though: Avoid instant or capsule coffee. Make it from ground coffee. This does not have to be a chore, if you get one of those pots with a plunger (I think they are called cafetieres) it is as easy as making tea. You can get the plunger pots (cafetieres?) for any size from one cup to a family size. They do not have to be expensive (although there are expensive ones out there) the cheapest I have seen is £10 (approx $15 US) for a one cup size. But remember, instant coffee has many times as much potassium per cup as ground coffee, so if she is using instant she needs to change ASP.

[KimberlyG86]

I greatly appreciate everyone who took the time to give great advice. I’m struggling with how she reacts when I try to tell her things I’ve read or am learning about kidney disease and her diet. Maybe I’m over stepping boundaries, I don’t know. I’m just wish she was more receptive to the fact I’m only telling her these things because I’m worried and want her to be more involved. She doesn’t ask the doctor many questions, she doesn’t understand what her lab results really are. All she knows is that the doctor said she’s stable right now and to come back in 6 months. Now I’m by no means perfect. I know we’re different people and handle things differently. Maybe I need some counseling on how to handle this myself. Maybe it’s not fair for me to do this to her. I’m trying to help. Imagine someone you know who worries. Now multiply that by 1,000. Hi, I’m Kimberly, that’s me! She knows I’m nutty but it’s with good intentions. She tells me I’m going to give her a nervous breakdown and she’s going to be fine.

So I guess for now I will step back and let the progression happen and try to enjoy the time we have together dialysis free and hope no serious situations occur ever, but especially on the vacation. She does take care of herself fairly well. She’s just my momma and she’s all I have. Until her doctor tells her she needs to stop drinking instant coffee, she will continue drinking 2-3 cups a day. I did mention star fruit and she told me to get off the internet.

Thanks for listening to me rant for my sanity and heart. ✌🏻❤️ & 🛳