brian back in the hospital - 3rd time this summer

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Thanks, Karlynn. I've been checking in to see. I'm glad they have an answer. Wonder why that is happening repeatedly though. I'm sure they're all over it!!!

Oh, this sounds good. Progress!!

I'll check in later today and maybe Deanne will have had a moment to update us here. Maybe now she can eat! and sleep!!

Best wishes still coming your way!!!

Marguerite
 
Thanks Karlynn, for posting for me. I can only post from my phone in the cath lab. The way the doc explained it is that the stent is like a cage with holes in it. During the healing process some people produce enough scar tissue to occlude the stent again. He said this occurs about 10% of the time. This is why drug eluding stents were invented. The doc said that he thinks some of these big stents will be available in drug eluding soon and that he may be able to put that in Brian. He recommends that we check it every 2 months to make sure that it doesn't happen again.

Once again, I am so f'ing pissed at nephrology. This is the 3rd time they were wrong and each time it puts extraordinary stress on his kidney and heart. I wanted them to do this test on Friday. The heart docs are right on everything and had all of their tests finished on Friday and able to say that the heart was as fine as it could be and was providing plenty of blood to the kidney. But, nooooo, the kidney docs said it couldn't be the artery and we just needed to wait and see if it resolved itself.

Anyway, I am feeling much more positive now and thank you all for your prayers and support. It proves just how many wonderful people there are in the world.
 
Happy to hear there is an answer and a solution. Sounds like a few medical folks need to be slapped along side of their heads. Shame on them for putting Brian (and you) through such agony for no reason. Hope all is better soon.
 
Those other doctors really put Brian's life in danger. I think you should write a letter to the state overseeing board, and also to the hospital administration. It is one thing to have this problem when there is just a kidney issue, but when the heart situation is thrown in it is far too dangerous to not take extra pains with his care and make sure everything is checked out.

They are not careful doctors at all, and should look at the big picture not just their narrow field.

Did they not see the physical stress Brian's body was under? I think everyone on this forum who read about the struggle realized the renal problems were stressing his heart. It looked rather obvious!
 
briansmom said:
Thanks Karlynn, for posting for me. I can only post from my phone in the cath lab. The way the doc explained it is that the stent is like a cage with holes in it. During the healing process some people produce enough scar tissue to occlude the stent again. He said this occurs about 10% of the time. This is why drug eluding stents were invented. The doc said that he thinks some of these big stents will be available in drug eluding soon and that he may be able to put that in Brian. He recommends that we check it every 2 months to make sure that it doesn't happen again.

Once again, I am so f'ing pissed at nephrology. This is the 3rd time they were wrong and each time it puts extraordinary stress on his kidney and heart. I wanted them to do this test on Friday. The heart docs are right on everything and had all of their tests finished on Friday and able to say that the heart was as fine as it could be and was providing plenty of blood to the kidney. But, nooooo, the kidney docs said it couldn't be the artery and we just needed to wait and see if it resolved itself.

Anyway, I am feeling much more positive now and thank you all for your prayers and support. It proves just how many wonderful people there are in the world.
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This is really good news. and I am sorry Brian (and YOU) had to go thru so much for DAYS because of the kidney doctor,

Justin use to have stents in his pulm artey conduit, they kind of look like chicken wire. He had to have his ballooned back open a few times for the same reason. He doesn't have them since his conduit was replaced.
What a relief and thankfully Brian should be feeling much better soon.
 
Nancy said:
Those other doctors really put Brian's life in danger. I think you should write a letter to the state overseeing board, and also to the hospital administration. It is one thing to have this problem when there is just a kidney issue, but when the heart situation is thrown in it is far too dangerous to not take extra pains with his care and make sure everything is checked out.

They are not careful doctors at all, and should look at the big picture not just their narrow field.

Did they not see the physical stress Brian's body was under? I think everyone on this forum who read about the struggle realized the renal problems were stressing his heart. It looked rather obvious!
Click to expand...



I agree totally. When you've had a bit of time to recuperate from the ordeal, a well placed letter is in order.
 
Deanne, I'm so sorry to learn all that is going on with Brian's health right now and I don't think you have over-reacted at all! You are his mom, and a VERY knowledgeable and insightful person about how Brian responds in certain situations. You are an important person on his medical team. Just keep doing what you are doing and do battle for him when you must. I'll add prayer support from this corner of the world.
 
Deanna-

I'll just say this one more thing and then I'll shut up :)

I've seen this kind of specialty territoriality several times with Joe, and it drove me crazy. One time, they even got into a fight about who was responsible for what and how they should go about it. We're talking about grown men, not children. I wanted to spank them all, maybe with a ruler!

Meanwhile Joe was put into danger because his care stagnated when they were fighting and not speaking to each other. And when I got after them, they got mad at me. But I didn't care, they really needed a talking to.

So I feel your frustration in spades.

It is one reason I always say with complicated cases, there needs to be a medical professional who is acting as a case manager and who can keep them all in line and on target. Maybe a Drill Sargent.

I think there should be a new medical specialty developed to take on this kind of task.
 
Deanne, I am sorry for what you all had to go through. They should hang their heads in shame for putting Brian and you all through such an ordeal.

Its almost midnight here and I wanted to check in before bed to see how Brian is doing. I am sooo relieved. This news has made my birthday complete. Blessings. x
 
WOW! What an eye opener reading all about this experience has been for me. I can't even imagine living it. It sounds like a nightmare just reading it. Don't those docs know that Mom is always right? I'm so thankful you were able to get the surgeon to straighten the nephrologist out and I agree some sort of letter is in order. You are protecting your child and have no reason to feel anything other than proud of yourself for being such a good mother. I hope now that they have the problem and a solution that Brian will be feeling much better real soon. Godspeed!

Rhena
 
Wow Deanne,these Doc's are all the same like put a life in danger
WHY?? No different in Canada,seems they are all taught the same
way,You are a very strong lady,Brain is a lucky child to have you
there and hope your fine and hubby,just too much for anyone to
endure,yet amazing the strenght you carry when your world turns up
side down like this.Continued prayers for all of you((HUGS)) your a hero
Awesome you got your dog with you nothing like unconditional luv
Do sneak the dog up to Brian when able:):)(hope he's a small dog);)
 
We are still waiting for dialysis, but Brian has peed 500 cc already. They have also turned off his dobutamine drip. He has eaten a few popsicles and not thrown up yet, I think he will feel way better after dialysis and I pray that his kidney returns to normal function and that his heart has not been damaged.

Nancy, I couldn't agree more. I know how relieved I am because now I am good and righteously pissed (american angry, not drunk). I had words with the nephrologist that was here today, but he has never been the primary on Brian's case. I told him how frustrated I was that the other two doctors were so narrow minded that they couldn't take the cardiologists and surgeons opinions about his heart seriously, let alone, my opinion. I will be writing the letter to their boss before we leave the hospital and discussing this further with the heart docs on a better plan for the future. I know they are planning to check his renal artery every 2 months.

I can't thank all of you enough for letting me know that I am not being unreasonable in my anger. Nancy I agree that there should be someone in charge of patients like Brian, it should be a specialty.

As far as the dog goes, he would be pretty hard to sneak in. He is half great dane and half english bull terrier (spuds mckenzie dog). He weighs about 85 lbs. We got him from a rescue center last October, he is about 2 years old and a big bundle of energy and love.
 
Deanne, I am so happy for all of you that Brian seems to be out of the woods for the moment and you have some answers about what is going on. I hope he can stay out of the hospital for a long time to come. I'd seriously have to find some different kidney Dr's.

Kim
 
Deanne, that is awesome news, I have been checking in on and off all day, just to see how Brian is doing. Now, don't overload him with food, remember he hasn't eaten much for a few days, slow and steady will win that race!

Now, you go and have something to eat, and a good sleep. You have fought a good fight.

I agree that there should be a "case manager"-type doctor in such situations. My MIL went from arthritis doc, to internist, to surgeon, to lung doctor and always in the middle was herfamily doctor. It was her lung doctor that thought it was liver problems, and referred her to a liver specialist out of town. At the first visit, this liver specialist diagnosed a bundle of tests, referred her to a lung doctor that was interested in the reaction of liver disease on the lungs, and talked liver transplant. All anyone in our town said was that she had slight cirrhosis of the liver (after a small biopsy was done). She was never given dietary info or anything and we all just thought that everyone at 65 had slight cirrhosis (she neverdrank more than half a glass of wine, maybe twice a year). Unfortunatley, she never got a 2nd appointment with the liver or the lung/liver doctor, because she died of a stroke shortly after these appointments, simply because she was not fit enough to survive a trip to OR.

Sorry, I rambled . . . two and a half years later, it still bothers me ...
 
I have been reading this thread every day, I'm so glad that things are headed in the right direction. Big hugs to all of you. I've got an idea....put a harness on the pup and take him in like a guide dog. Who would know??? :) Nothing like a doggy kiss to make anyone feel better. I hope things go smoothly for Brian now. Continued prayers for the family.
 
briansmom said:
As far as the dog goes, he would be pretty hard to sneak in. He is half great dane and half english bull terrier (spuds mckenzie dog). He weighs about 85 lbs. We got him from a rescue center last October, he is about 2 years old and a big bundle of energy and love.
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Shame the dog is ONLY 85 pounds. You should sic him on those dumb docs.... A bigger dog would sock a bigger message. ;)
 
catwoman said:
Shame the dog is ONLY 85 pounds. You should sic him on those dumb docs.... A bigger dog would sock a bigger message. ;)
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Marsha!!!!!! :eek::eek::D;)

Deanne, I think Nancy had a good suggestion. There must be some kind of Board to voice a complaint to. If you just talk to his boss, there might just be too much familiarity between them. But if you talk with a grievance person who oversees everyone and has no partialities to his/her own staff....well, they'll investigate and come up with some changes. I had to do this recently regarding a mishandling of something with my father with Alzheimer's (now deceased). There was a problem with a pharmacy and I called the Oregon State Board of Pharmacy and registered a complaint over the phone. Didn't hear back for over a year, but the pharmacy did get in trouble.

Another thing I want to mention is whoever said a Case Manager. Your insurance company might have Case Managers. They are not doctors, but they have an abundance of resources and are very good at overseeing certain things. At the very least they could help you figure out how to dance this one out and get what you need for Brian. They have seen and heard everything and are more familiar with the politics. Much like I mentioned before that an in-hospital social worker would be. Honestly. It might be useful to get some advice from some of these kinds of professionals before you overstep your bounds (and respond emotionally) with the doctors. Please stay mad as hell, just get some instructions on how best to unleash that!!

Wishing a very good night for you all!!!!!

Marguerite
 
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