letting the vent open a tad

[chattrbabe]

I know I am new here, but I need to vent a little.

Here is my opening post: http://ihatedialysis.com/forum/index.php?topic=26266.0

Sal is on HD with a semi-perm HD catheter. Today, I picked him up from dialysis and he was a bit upset. He told me that there were two people who worked there today, who told him he probably won't ever get any better. He said the second one said (with a laugh) "Man, I'm just bursting people's bubbles all over today!", and talked about other types of access points, that would be more permanent.

To be honest, it made me a bit angry - what audacity! I told him I want to hear it from the doctor and not some schmuck that works there.

We are fully prepared to keep this new dialysis routine up, but why would they say that? Just to be jerks? In the hospital (paradise valley), his renal specialist told us there was an 80% chance that his kidneys might kick in, but no promises.

When he was originally admitted, his creatinine was up at 8.3. It has steadily gone down over the past (now) three weeks. As of the 7th, it was down to 3.7. He has steadily lost weight (over 50 pounds) and we are sticking to the diet as tight as can be.

We don't have the phosphate binders (Renvela) right now, since we are waiting for his insurance to kick in and cover that cost, or at least part of it.  All we get when we ask what else to do is, "Uh, avoid phosphorous?". I understand quite a bit about diet, and how crucial the CA:PH balance is for the body. I have even asked the in - office nutritionist if even just using calcium supps would work for now. She said we would have to wait for the doctor, and ask him, but he will not be there until the 19th, in the morning. Sal's dialysis isn't until late afternoon....

Levels as of 4/7/12:

Potassium: 4.7
Sodium: 140
Bicarbonate: 25
Calcium: 8.1
Phosphorous: 2.6
Creatinine: 3.7

So, am I right to be angry with the people who told him he may not have a chance? I know it's reality, but the bubble bursting comment was way out of context... What else can we do about the Renvela? 

Thanks ahead for any advice posted, and sorry if I posted in the wrong area (or made too many different area posts in one post... I'm kinda known for that  )

[willowtreewren]

Ashley, I think you have every right to be angry at this callous and unnecessary comment. This worker has NO IDEA what Sal's situation is. Furthermore, attitude (and read that a positive attitude) is an important component of any rehabilitation plan. This worker is going against the best medical protocols.

Fie, I say!

Aleta

[del]

Listen to the doctors - not the people who work at the clinic.  When hubby first stasrted hemo a nurse at the clinic told him that a fistula would last 3 years at the longest!!  Sort of burst his bubble.  She didn't know what he was talking about though.  He's been on hemo for 12 years now and has the same fistula that has worked perfectly since the first time it was used!!! 

[Poppylicious]

Yes, you have every right to be angry, but at least this prepares you for the fact that his kidney function may never increase enough for him NOT to need some form of dialysis.  My Blokey was told much the same thing when he was rushed into hospital with massively high creatinine levels.  This was after a biopsy where they'd found four things wrong and all four were things that could (allegedly) be treated successfully.  Within days he was being told that his kidney function was practically non-existent and he would need to begin haemoD.  You can imagine how he felt, especially as they then got his hopes up by saying he might not need it for long (not true either). 

So yes, be angry but be aware that it might be true too. I doubt they said it to be jerks ... they more likely said it to prepare him and because they're not used to people on haemoD suddenly not needing it anymore (except through death or transplant). Discussing other more permanent access points is a good thing, even if it isn't something Sal wants to consider right now.  Always best to be prepared for the worst! Without being privy to the precise conversation it's difficult to make judgement on the worker ... I know Blokey was for ever coming home and saying something and I'd later find out he didn't tell me half of what was really said/happened. In fact, I can sit in on the same appointment as Blokey and hear a completely different conversation to the one he hears ... it makes me giggle.

*huggles*

[cattlekid]

While I can't help with the clueless tech, I can definitely give you some help with the Renvela cost. Go to this website:  http://www.renvalue.com/.  You can get a coupon that will help with the cost of the Renvela, even if you do not have other insurance.

I Google all of the names of my brand-name medications and most of the time, I come up with some sort of patient assistance.  Some are income-based but many are not.

[amanda100wilson]

Sal's phosphate is at a good level at the momen without the Renvela.

[looneytunes]

Oh Ash...YES...YES...YES...you have every reason to be angry.  That one ignorant comment can cause a lot of grief.  I have a friend who suffered acute KF and DID recover within about 3 months.  While he still had to be careful with his diet, he was no longer being dialyzed.   In Sal's case, we will all hope for the same.  If not, though, a permanent access is a better way to go.  This I know from my hubby's experiences...like 5 rounds of sepsis caused by a catheter.    But, you have time to learn all about an access while we are all hoping for a quick end to dialysis for Sal. 

As far as Renvela, the coupon link is a great suggestion. 

[amanda100wilson]

probably a throw-away comment without much thought to its impact.  sounds like a burnt-out, insensitive person, who although maybe speaking the truth, could so so in a more thoughtful manner.  Two options, let if go, or complain.

[MooseMom]

Sal is on HD with a semi-perm HD catheter. Today, I picked him up from dialysis and he was a bit upset. He told me that there were two people who worked there today, who told him he probably won't ever get any better. He said the second one said (with a laugh) "Man, I'm just bursting people's bubbles all over today!", and talked about other types of access points, that would be more permanent.


Phosphorous: 2.6

I'm not sure why binders are an issue with a phos of 2.6.  If that figure is correct, Sal doesn't need binders.

As for what the techs said, I am frankly quite horrified.  That's one of the most insensitive comments I've ever heard, and for it to come from people who work with dialysis patients, I'm just gobsmacked.  Can you imagine such a thing being said to, say, a cancer patient?  These people are not nephrologists and do not have the training and experience that would enable them to give even an educated guess as to what Sal's prognosis will be.  And based upon the neph's statement that 80% of patients such as Sal DO get better, these staff members are flatly incorrect.

It is not their job to "prepare" you and/or Sal for what may or may not be down the road.

It would be easy to tell you and Sal to just ignore them, but if they had said that to me, ignoring them would be the last thing I'd be able to do, and I'd me more than a "little upset".  When you are faced with a life-changing event like permanent kidney failure, even if it is still just theoretical, the last thing you need is flippant and discouraging remarks by the very people who are supposed to be supporting you.

I am outraged.  As for what to do about it, I don't think I'd lodge some sort of formal complaint, but if it happened again, I would diplomatically tell them that such comments are unhelpful and unappreciated AND  extraordinarily unprofessional.  Sometimes people need to be reminded that their dialysis patients have enormous obstacles in their every day lives.

[chattrbabe]

Thank you all, for your responses! - Cattlekid, thanks for that link, I will give it a go!

I know it is a reality, and again, we are prepared for that but it really was upsetting for such an empty yet hurtful and needless comment to be brought out.

One of the nurses told him about a catheter that would allow him to actually take showers instead of baths. They also told him that if he lost a bit more water weight, he could be eligible for home dialysis, and they would train us on how to do it.

Moosemom, we have been really sticking to the renal diet the best we can. I do my best to keep veggies and other things low in all levels other than calcium. We stick to 15oz of protein (meats) per day and side it with a veggie, rice, and an occasional roll. I was pretty surprised to see that PH number, too!

When he was first admitted, he was only putting out maybe 300 per 24 hours? He started building up pretty quick once he got a little better, though. Outside, his urine output is 'golden' (lol, pun), around 800 - 1,200 in a day, depending on what he drinks (he's not on a huge liquid restriction).

Yes, it has been incredibly life changing for the both of us, and no, I don't think they look at it from the patent's perspective. A friend of mine is a Hospice nurse and completely agrees, that he was in the wrong. She said I should file a complaint now rather than later, since he pretty much admitted to doing it to other people too. I'm on the fence right now, but we will see how it goes in the morning.

Good news is they have been gradually moving his dialysis times up earlier in the day. The first few days it was at 3:15pm, then they had him coming in at 1pm and they called today to ask if he could go in at 10:45am tomorrow, then even earlier on Saturday! He said he's excited, since he will have the rest of the day to paint. (LoL)

[chattrbabe]

Well, I took sal to dialysis today and had a chat with the head nurse there about the comments made the other night. She completely agrees  that it was inappropriate  behavior to use at all and that it is not their place to determine outcomes. She said she would pull a meeting tonight after all of the patients go home, and re-outline the staff duties and code of conduct. She apologized a lot about it, which made me feel much better.

She pulled his chart up today and said she was amazed at how fast his numbers have gone  down and where his PH is, even without the binders. She said his doctor would be in there tomorrow morning and she was going to show him the charts and numbers. She said he will most likely call us in for a further treatment discussion since his numbers are so good. She ssaid she would also let him know about the renvela  issue and ask him his opinion on regular calcium suppliments or a multivitamin to get his calcium back up a bit higher.

Good news from today's dialysis is that he hit his dry weight!!!! He has lost 68 pounds since starting dialysis three weeks ago. It is amazing and he is very happy!


 

[chattrbabe]

Hi again! 

I wanted to do a quick update about Sal.

He is still doing good! We are both sticking like glue to the renal diet (except the potassium part since I DO need that), and he has lost a few more pounds!

His nephrologist met with us, and decided that the binders were not necessary right now, since his levels are so low and said that calcium supplements weren't necessary either, but feel free to take them. He also said that Sal can stop taking the lisinopril unless the head nurse tells him he needs to, after his dialysis sessions. He said that the HDC wasn't putting out the pressure it needed to be putting out for a proper cleaning, so if the enzyme they put in it doesn't help, they are talking about replacing it with a regular HDC (he said the hospital ones always suck) or a fistula.

I went back in the dialysis area a few nights after my last post and an RN approached me and talked about all sorts of stuff, then pops off with "Yeah, well, he thought this would just be a temporary thing and like I told him....it's...not so temporary..."... Right away, the volcano exploded and my eyes flicked up at him. I said "Ya know what? I don't know what your exact job is other than being an RN, but I would like to hear that from his doctor. His doctor says that things are looking bright right now. I think it might best that you stick to your job and keep from knocking people face first in the dirt.". His face was priceless, and I walked over and sat with Sal.

The next day we were there, I let the head nurse know what happened. She got pretty ticked and apologized again and told me that she had a meeting with them all, like she said she would and she didn't know why he felt like he could do that. I haven't seen him there since that day and I can honestly say, I don't care to see him again. After he was told not to, he still did it. Audacity!

The other nurses there love him and croon over his shirts (I put a zipper in a few t-shirts for HDC access) and tell him he is very fashion forward, lol.

The other day, they had him go in earlier than normal, and when he got done they had to pull him back in and sit him down on the chair again. After a few minutes of sitting in the waiting room (as we usually do just in case) he got really dizzy, saw spots and felt nauseous. His blood pressure dropped to 60/20 and we had to wait for it to come back up, which took a little while.

Anyways, gotta run!

Ash

[MomoMcSleepy]

His numbers now are awesome!  (considering)

They are very close to my numbers, and I am still pre-Dialysis.  Once you reach a certain point, often the kidneys can't bounce back, but in an acute case they can.  Either way, he is doing so much better, and you are taking good care of him!  Zippers in T-shirts, you're a sweetheart doing that!

I hope he keeps heading in the right direction and receives excellent care from here on out!

God Bless you both!

[chattrbabe]

Thanks! 

It's been a bit bouncy since I last posted. I've had to bark a few cats back up their trees, regarding telling him he'll probably only live ten years, ect. Just garbage like that, that he just doesn't need! If you're not the Nephrologist, I don't wanna see your lips moving about those things! 

His levels are still doing really well, Calcium was up to 9.6 this last round. I'll get the papers in the AM to list full stats. They still haven't restricted his fluid intakes since he pee's quite a bit.

They ARE talking about doing a fistula though, because they said his HDC is only running half as good as it should be. They also said that the hospital HDC's don't ever work right and replacing it would be a waste of time opposed to a Fistula. Anyone here have one?

Social Security denied him for disability, but DID give him Medicare. They said he did not qualify for disability because in ten years of working, he has only earned 40 credits.

Being that summer is coming up, and Phoenix being so hot, he want nice icy treats. Obviously, ice cream is out of the question so i picked up an ice cream maker the other day and I started making home made sorbet for him. As long as I portion it right, he's getting the right amount of fruits per day, and still staying below his limits.

As for diet, he's eating almost nothing BUT meats. Breakfast is a steak and eggs, lunch is tilapia or chicken with rice, dinner is a couple of steaks. Snacks are a small steak or tilapia on bread. They said they want him eating even MORE protein.. How is he supposed to do that when he almost pops at every beefy filed meal? LoL!!!!

The zipper shirt, yes... LOL I have already had a few commissions for them from a few of the people there. They all love them!   

[bleija]

as for the binders, your doctor should have samples, i know when i my insurance changed and had issues.... my dr gave me like 3 bottles, there were 30 in each one... cant hurt to ask

[Grumpy-1]

I was told that TUMS will work as a binder as well.  Check with your DR about that.  Grumpy