proper care?

[kokua]

My husband has Stage 5 kidney failure and he's been under the care of the same physician for 5 years. I started to accompany my husband on his doctors visit and recently have been doing a lot of reading on the internet about the symtoms and the care of his ailments. He is experiencing the usual anemia, constipation, insomnia, itching and fluid retention, however he is not taking any medications to address the anemia and the itching. NO phosphorus binders and no IV therapy for the anemia. His GFR is 13, which I mentioned to his doctor if he should be on dialysis, but the doctor said he will be considered at 11. The doctor also mentioned that dialysis will not make him feel better, so my husband does not want to do dialysis. I feel like we're not getting the proper treatment.

[looneytunes]

Re: proper care?

Hi Kokua. My immediate thought after reading your post was I would change doctors. I don't think I could work with a doctor who was so negative.

Best of luck to you.

[kokua]

Re: proper care?

Thank you, I mentioned that to him but he's afraid the next doctor will insist on dialysis. I feel he should be on it now. All of you out there on dialysis, are you still itching, are you losing your muscles in your body, are you sleeping better, are you still feeling tired, are your bones hurting? I want him to read your replies.

[Blessed]

Re: proper care?

Hi Kokua,

I started dialysis last week (GFR 12, Creatinine 5.00) and I am feeling better. Less itching, less fluid retention (they take it off during dialysis) and I am actually LESS tired. I think that has to do with them giving me medication during dialysis to help get my hemoglobin up. My biggest piece of advice to your husband would be to be proactive about starting dialysis. Since it sounds like the time is nearing for him, he should go get his fistula now (since it takes several months to mature and be ready to use). I was not so proactive because I also had a Dr. who was not giving me proper care...and when I switched Dr.s the new Dr. said its time NOW for dialysis, so I have the awful tunnel cathedar until I can get a fistula. Let me know if there's anything else I can help you with, and let me know how things go with your husband.

God Bless!

[hd#1cg]

Re: proper care?

My husband (50 years old) began dialysis 09/16/09. 3 days a week, 4hours a day, hemo in center. HUGE difference for him. He feels MUCH better (he has no other underlying health issues). We new the path we were on was headed in this direction (used the exercise/renal diet method to maintain 12 years after diagnosis of CKD). He had a graft place in his arm 08/07/09. It healed up just in time to get started on dialysis. The dialysis removed approx 30LBS of fluid from him in the 1st 3 treatments. He has a lot more energy, sleeps SO much better, thinks and speaks more clearly, and he even eats now with out being physically ill (it was like living with someone with morning sickness for the past 8 months). There has been some recent leg cramping, and we will address this with the DR and dialysis staff for a remedy. No itching so far. I don't know if it makes any difference or not, but we run constant cool mist humidifiers in our home in 2 different parts of the house. Creatinine 5.00 1st of August, 8.95 next labs a few weeks later, and 12.00 when he finally agreed to start dialysis. I guess the bottom line is....how far do you push it before you do serious damage to other parts of your body? And, you really need to get your head wrapped around the time commitment. Once you are at stage 5 the reality of CKD is dialysis, transplant, or death.

[malibu]

Re: proper care?

kokua, are you in the US?

You need to RUN, not walk to anothe Dr for your husband ASAP. Seriously, he needs to be on meds for his condition. It is unclear by your post if he is on any meds or not. Please go to another Dr.

[Maria]

Re: proper care?

The kidneys are a major organ.
They filter waste products / by-products of food metabolism.
When kidneys don't work well, these wastes build up and can cause various symptoms (nausea, vomiting, irregular heart rhythm, etc).
Dialysis removes wastes, basically performing in a similar manner to working kidneys.
Many people will say they didn't know how bad they felt until they started feeling better.
It is my opinion after 10 years working in a dialysis center that dialysis does indeed make patients feel better.
This is not medical advice. This is a personal opinion based on personal experience.
I'm pretty sure there are others on this forum who can validate this. And there may be people who would deny this, but I'd guess that population would be less than the former.

[jeffmoore]

Re: proper care?

Thank you, I mentioned that to him but he's afraid the next doctor will insist on dialysis. I feel he should be on it now. All of you out there on dialysis, are you still itching, are you losing your muscles in your body, are you sleeping better, are you still feeling tired, are your bones hurting? I want him to read your replies.

Hi Koka, I read your post about your husbands concerns and uncertainties whether he should go on dialysis or not. Well, from reading what you said about his dr., he doesn't know how dialysis will make any patient feel, until they actually do dialysis, because every patient is different, if whether they can handle any form of dialysis treatment. And if he is having all these symptoms non-dialysis, then in my opinion, it sounds like he may need dialysis real soon, because it sounds like he needs to be on a renal diet, which I have to be honest with you, can be quite complexing to follow, but it can be done with much determination and faith and belief in him. I must admit I did feel better after starting hemodialysis treatment, but as the time went on, I was having major problems with my AV Graft, clotting and numerous repairs. It caused me to develop congestive heart failure, because of the swelling that I was experiencing with my Graft, it was hard to know how much appeared to be edema and how much actually was excessive fluids, because I was coming in so severely swollen, because of all this, I had four Grafts altogether, and it was evidence that I couldn't have anymore grafts in the upper part of my body, and that is why I have been on peritoneal dialysis for the last decade. I was previously on hemo for ten years. Yes, there are ups and downs coping with dialysis, but I have mentioned in my book, that there are more and more people living long, productive lives like myself on dialysis. The key to maintainng good health on dialysis, is knowledge, learning everything you can about the renal life, and learning how important it is to follow a proper renal diet, and being very keen about the medication that you'll have to take also to maintain that good health. If you are interested, you can read an excerpt and my author bio at www.xlibris.com, just click on the bookstore and search midway right sidebar - my title - My Renal Life by Gloria Ann Jeff-Moore. Tell your husband it is not as bad as he thinks. and through the years I have seen a lot of great improvement where dialysis treatment and that renal diet is concern. The diet is way more liberal than it was when I first started in 1990. my motto has always been "Don't Let This Disease Control You" "You Control The Disease". I have been blessed to finally have a great neprolgoist that cares and keeps me informed of everything that occurs with my progress on dialysis, but it hasn't always been like that, I have gone through four neprolgist through the years, but in the last decade my new dr. has been wonderful, and I have been doing a lot better with everything. I hope that your husband can find a dr. like that. So, tell your husband to Don't Fret!, there is always a solution to any health problem in the renal world. I don't mean to ramble, and rant, but I got to be real with you, he can live a long, and productive life with dialysis.
Best Regards,
Glo

[kokua]

Re: proper care?

Thank you to all who responded. I appreciate all your advice and know that my husband feels better in knowing that dialysis can be good for him. I'm going to start looking for a new doctor on the neighboring island. Thank you again!