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TIZZIE5 SparkPoints: (553)
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12/5/12 6:35 A

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Update: My husband had a problem with the dialysis dropping his blood pressure into dangerously low numbers and after a session it was straight to the ER and being admitted for a few days. He was also diagnosed with Mantle Cell Lymphoma during one of the stays. The chemo also dropped his blood pressure. So they would pump him full of fluids to raise it which required extra dialysis which dropped it too low. A vicious circle. He succumbed to it all on Nov. 12. My wonderful, active, outgoing husband is no longer struggling. But I am. I just don't think dieting is my main focus right now. A few pounds are gone anyway due to the stress but maybe later I will be back. God bless you all.

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MIMAWELIZABETH's Photo MIMAWELIZABETH SparkPoints: (250,217)
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9/15/12 7:43 A

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You said it, Kathy! We ARE a series of science experiments!!!

Tizzie, my DH would have loved to keep working, at anything. It took awhile for him to accept that "retirement" was going to be his new normal, whether he liked it or not. Actually, it's only lately that he seems to be okay with it. That's probably because he's beginning to understand and accept how tenuous his health is.

As for qualifying for disability status, unless a patient is adamant about working and it's not a physical-type job, I can't imagine a nephrologist being okay with it. Perhaps your husband's doctor was trying to give him some hope about getting "back to normal" in the future? After a kidney transplant, maybe, but definitely not on dialysis.

The first thing DH's nephrologist told him was he HAD to stop working; that even if he felt like he could work, it wouldn't be long before the lack of kidney function would keep him from being able to. It was a great relief to learn that being officially diagnosed with ESRD automatically qualifies a person for Social Security Disability.

Also, once a person starts dialysis, they will qualify for Medicare coverage; exactly when depends on the type of dialysis. (Sorry - this is assuming you are in the US!) We were VERY surprised to find out that PD patients are covered as soon as they qualify, while Hemo patients have to wait three months before Medicare kicks in.

Luckily, we had pushed for DH to go on PD for the convenience, plus going to the Dialysis Center for the emergency Hemo was extremely disheart- ening to him; the financial benefit of PD was a huge bonus. In fact, we received very little info about PD, and most of the medical personnel were (overly) cautious about us relying on it.

One key point about being a PD patient is that they have support at home - a partner - who is also required to attend the PD training and qualify. Following sterile protocols are absolutely vital, as an infection can easily lead to peritonitis. Also, you have to keep daily records, and choose the strength of the dialysate solution each night.

The responsibility in PD is on the patient/caregiver, not the Dialysis Center.
You'll probably be asked a dozen times if you think you're up to it. For all the warnings, we wouldn't do his dialysis any other way! We've gone on several trips, and do the PD in the hotel rooms with no problem. We look at it this way: if the PD ends up not working, there's always Hemo...

Wow, it got late! I gotta go... Good Luck!!!

Take care, Elizabeth ~ emoticon emoticon


I forgot... P.S. DH has dry mouth too - I'll ask him what he does!



Edited by: MIMAWELIZABETH at: 9/15/2012 (07:48)

My son Scott's memorial:
www.youtube.com/watch?v=AopgOKaOUwY

"I'm not telling you it's going to be easy.
I'm telling you it's going to be worth it."

"Life isn't about how to survive the storm,
but how to dance in the rain."


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
9/15/12 2:00 A

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I'm not in dialysis yet, and I have that problem with the dry mouth... there are days when I could drink 16 glasses of water a day and still feel thirsty! Just have to deal with that some days... LOL

We are all our very own huge science/health experiment. We get as much info as we can, and try a bunch of things to see what works and what doesn't, and we just take it from there!

Hang in there. It takes time, but it IS worth it!
emoticon

Kathy emoticon emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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TIZZIE5 SparkPoints: (553)
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9/14/12 10:19 P

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Hi Elizabeth. My husband is looking at videos about peritoneal dialysis. He is going to a clinic for hemodialysis at this time but I think the idea of doing it at home at night is intriguing to him. One big thing for us is that his doctor said he should get on disability because he couldn't drive anymore. Now, after getting rid of his equipment and cancelling his work contract with a company he had been leased to for 9 years, his doctor says 'well he may be able to work in a few months as long as it is local so he can keep his dialysis appointments'. Uhhhh...WHAT?? He is so weak and sleeps all the time. How on earth could he work? His labs are way off on his protein, vitamin D and albumin.(i probably didn't spell that correctly) He needs a bit more protein but less fluid. How did you balance out the dry mouth with the diet for your husband?

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MIMAWELIZABETH's Photo MIMAWELIZABETH SparkPoints: (250,217)
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9/14/12 10:10 A

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Welcome to the team, Tizzie! I am also a member here for my husband, who was first diagnosed with kidney disease in 1996. We've been on the Dialysis roller coaster for 18 months now, and he is finally stabilized. DH's kidneys suddenly started shutting down in the Fall of 2010, but he didn't want to tell me how bad it was getting.

I found out in February 2011, and it was a complete shock! I knew DH was feeling more and more fatigued, and basically crappy all over; but depression and extreme stress from his bad work situation (long story) seemed to account for it. I expected an ESRD diagnosis in a year or two, not the first time I went with him to the nephrologist!


First of all, there's a BIG difference in diet and liquid requirements and limits between those on Hemodialysis and those on Peritoneal Dialysis like my DH. I am EXTREMELY happy that he was able to qualify for PD, and that it's been successful for him. Not only does it mean DH does his dialysis at home, at night while he sleeps, but he is allowed far more liquid, as well as potassium, phosphorus, etc.

All that was new to me: "Po-tas-si-ummmm - WHAT?" After DH was diagnosed, as his catheter surgery approached, he began to eat more healthily, especially by eating more fruits and veggies. When DH checked in, they couldn't do anesthesia because his potassium was dangerously high. They did a twilight sleep and inserted a catheter in his neck and out his chest for emergency Hemodialysis.

So THAT's how we learned about potassium... and we're still learning about adjustments in his food and meds and other treatments to balance all the stuff they check during his monthly lab tests. There's a Dialysis Technician (nurse) who stays in close contact with DH, and with me. We can call or go to the Dialysis Center whenever we need help; plus that's where DH sees his nephrologist each month.


Tizzie, you're just beginning... While there's a lot to learn and do NOW, we're also in this for the long haul. I think that was the most frustrating aspect for DH: he thought once he got on Dialysis, he'd go back to "normal" and feel 100% again. It doesn't work like that! Plus, he gets frustrated by the fluctuations in his labs. In August, his results were perfect; but he has to understand, it'll always be a balancing act.

I think the best "lesson" we learned from DH's doctor and the Dialysis personnel is to NOT get tied up in all the minutia, and to NOT second-guess our decisions. I'd worry and fret every night about whether we chose the correct formula for his dialysis solution. There's three basic strengths, and they can be mixed a dozen ways; which depends on his stats for the previous night, and current day and evening.

Each month we'd bring in the daily logs recording his stats and the readings from the PD machine, and would ask: "Did we do this right? Should we have used red-green that night, or was green-green okay?" The lesson was, trust your judgment, and just do the best you can; what's most important is what happens OVER TIME. They've all been so encouraging and supportive - It was a great relief!

Best Wishes, Elizabeth ~ emoticon




My son Scott's memorial:
www.youtube.com/watch?v=AopgOKaOUwY

"I'm not telling you it's going to be easy.
I'm telling you it's going to be worth it."

"Life isn't about how to survive the storm,
but how to dance in the rain."


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TIZZIE5 SparkPoints: (553)
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9/13/12 6:22 P

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Can't tell you how much I appreciate all your help Kathy! The last few weeks have pulled the proverbial rug out from under us. He had a good job and seemed very healthy. Now he is out of work and on this dialysis routine and our heads are swimming. We get lots of advice from well meaning friends but no one is really aware of what the right things are. Thank you sooo much. I will certainly check out the links and will appreciate any information I can get. He did get to see a dietician so we have a better idea of what he can eat. I was not cooking enough protein for him and he was drinking way too much water. All the 'healthy' foods turned out to be not so healthy. I'm looking forward to having this place to come with questions!

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
9/13/12 7:19 A

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TIZZIE,
First, thank you for joining us! And I'm always proud to welcome anyone who is being proactive for their loved ones!...

I hope you can find the information--and inspiration-- you need here...

The rules for those on dialysis are a bit different from others who have kidney disease... higher in protein, for one thing! It really is imperative that you work closely with a certified trained renal nutrition specialist. I'm not sure where you live (we have members from all over!) but in the U.S. most dialysis centers have a nutrition adviser attached to them. Tell your doctor you want an immediate referral, so you can help your husband deal with the special needs he is facing!

In the interim, you can program the menu planner to track the nutrients you mention. The data base here is quite extensive, but since manufacturers are not required to report certain things (like phosphorus) in the nutrition labels, some of the things are not as accurate as they might be. The nice thing is, you can program in anything... and just as a general rule, stay away from processed foods as much as possible. Even the packaging on such things often has phosphates added...its a great preservative! LOL

Here's a link to a basic list from the AAKP (American Association of Kidney Patients)
www.aakp.org/library/attachments/nut
ri
tion%20counter%20english.pdf
It DOES list the phosphorus... though it doesn't include every food, you can get a good educated guess from looking at the data.

Also, if you click on the team title, it takes you to a list of discussion topics, and there's one permanent topic for the diet for beginners that has some good basic info on what foods are high in things you may need to avoid...I'm including a link to that too, so you don't have to go hunt for it this time around! LOL www.sparkpeople.com/myspark/team_mes
sa
geboard_thread.asp?board=0x12882x461R>41266


Welcome aboard!

Kathy emoticon emoticon

P.S. If there's anything on the site you need help with, just ask! The folks on these teams are VERY helpful, and what we don't know we can usually find out! LOL

Edited by: I.M.MAGIC at: 9/13/2012 (07:20)
"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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TIZZIE5 SparkPoints: (553)
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9/12/12 11:18 A

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My husband was diagnosed with ESRD last week. He has started dialysis and we intend to enjoy his company for a long time. But this is new territory and we keep hearing conflicting information on his diet. We have gone online to the Kidney Foundation site, my sister in law is a nurse and brought us in a diet they use where she works and the hospital gave us a handout with some information. We still haven't seen a dietician. We have read he should get up to 2000 mg sodium and potassium, 1000 mg phosphorus, 6-8 g protein. Ok, but the list of what are good food choices and bad choices is confusing. How long before we get it figured out?

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