My dad has a mass on bladder and kidney not functioning

Posted by formydad @formydad, Apr 24, 2019

He is getting surgery tomorrow to remove mass have no idea if cancerous- assuming they will send off – doc said removal may”jump start his kidney which he was unaware is not functioning.. he had prostate cancer and has brach treatment i believe – that cancers gone but i have been reading that having had radiation for it may lead to bladder cancer – anyone experience this?

@formydad

Yes hes trying desperately to get answers. When he told them he had fluid coming out his”other end” they looked at him confused although thats exactly what was happening.and liquid looked exactly like what was in drainbag.
another doctor told him it was strange for fluid to come out of the actual cut drain hole after the doctor had plugged it to see if his body would absorb last week- it did not come out the drain because it was pugged started leaking from around the incision.. hes basically just laying inhospital tonight they did another culture today- they are doing a procedure tomorrow— not quite sure what- either putting in a new drain or. Something.. im frustrated and yeah i think he just isnt getting much out of docs on whats really the issue.. if its normal ok if its not ok so what do we do how do we resolve going back n forth for days at a time each time takes a toll. Im hoping more answers cone tomorrow.After original op he had a drain in hosp. They sent him home w/ out it
Then he filled with fluid was in pain went back up they pur a drain in- hes been watching Amts that drain puts out then went back to doc thats when he plugged to see if bod would absorb shortly after apt they left in store he had it draining out of the incision – thats when he called back and asked what to do
when he when he went to er this time it was more pain from fluid not draining- fever infection- guess we’ll see how it goes tomorrow . Just need so e answers thats all. I cant find much anywhere on this issue..

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@formydad, It sounds to me like you are hearing this via your dad. Is that correct? Is it possible for you to be there with him so you can hear the words and of the doctor?

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Have your dad record his visit with his doctor if you cannot be there. Do you have patient portal access to your dad’s doctor? My son a d daughter-in-law have access to my doctors.
Sometimes there is just so much information and it can be overwhelming. My kids will go over the doctors’s notes and then we discuss it. There are times when I missed something the doctor said.
Ask your dad to add you to his charts for sharing i information with you.

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@kathleenkin

Have your dad record his visit with his doctor if you cannot be there. Do you have patient portal access to your dad’s doctor? My son a d daughter-in-law have access to my doctors.
Sometimes there is just so much information and it can be overwhelming. My kids will go over the doctors’s notes and then we discuss it. There are times when I missed something the doctor said.
Ask your dad to add you to his charts for sharing i information with you.

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Ok thanks for the info- they are working on putting me on to get information- and the docs seem to come when im not there i live an hour away from my parents ive asked my parents to record it but i think they just forget in the midst of it all. Hopeing for more answers tomorrow the constant waiting to even see a doc in the hospitals today are really a sad state of affairs…

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Hang in there
– praying for your dad and family

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@formydad

Ok thanks for the info- they are working on putting me on to get information- and the docs seem to come when im not there i live an hour away from my parents ive asked my parents to record it but i think they just forget in the midst of it all. Hopeing for more answers tomorrow the constant waiting to even see a doc in the hospitals today are really a sad state of affairs…

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@formydad I might also suggest asking your dad if he has a medical power of attorney. Besides stating what his wishes are, it also names the person, or persons, who can make decisions if he cannot. Usually it is the spouse. Ask to have yourself added. Then the docs know that you’re part of the decision making team and/or want information. I did this with my parents. When dad needed surgery, my mom told the doctors to call me and discuss options. They always did. I was 2000 miles away. I could then discuss everything with my mom and siblings and put all the info into laymen’s terms. The unit’s social worker can probably help with all of this. You might also ask about a care conference with your parents and the whole team. Do you think this might work for you? Let me know what your parents think about this. You’re doing a great job!

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@becsbuddy

@formydad I might also suggest asking your dad if he has a medical power of attorney. Besides stating what his wishes are, it also names the person, or persons, who can make decisions if he cannot. Usually it is the spouse. Ask to have yourself added. Then the docs know that you’re part of the decision making team and/or want information. I did this with my parents. When dad needed surgery, my mom told the doctors to call me and discuss options. They always did. I was 2000 miles away. I could then discuss everything with my mom and siblings and put all the info into laymen’s terms. The unit’s social worker can probably help with all of this. You might also ask about a care conference with your parents and the whole team. Do you think this might work for you? Let me know what your parents think about this. You’re doing a great job!

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@becsbuddy This is a very good suggestion. Often it takes more than a couple of people to understand what is being put in place; the medical team is familiar with procedures and sometimes forgets it is not in laymen's terms!
@formydad I hope your parents will consider a care conference with the whole team, and allow you to help as you want!
Ginger

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@gingerw

@becsbuddy This is a very good suggestion. Often it takes more than a couple of people to understand what is being put in place; the medical team is familiar with procedures and sometimes forgets it is not in laymen's terms!
@formydad I hope your parents will consider a care conference with the whole team, and allow you to help as you want!
Ginger

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Yeah thanks for all the advice all sounds great- dads back home now they’ve isolated the culture and said they know how to treat infection so they sent him home moved his drain deeper and he has to give himself antibiotic shots think through a pic line- he will be following up soon. I will def be trying to et up more info conf. With team 🙂
Thanks for sharing all your experiences i know they are personal but i appreciate your points of view! Thanks for being patient with me sometimes i get so frustrated about the docs not showing up or calling back or waiting so long i feel like i reach out about the same things alot.. anyway im currently getting over some awful stomach bug so i need to keep away from my parents for a few days but ill be-on phone with them 🙂 wanted to wish you all a Happy And Healthy New Year!

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@formydad

Yeah thanks for all the advice all sounds great- dads back home now they’ve isolated the culture and said they know how to treat infection so they sent him home moved his drain deeper and he has to give himself antibiotic shots think through a pic line- he will be following up soon. I will def be trying to et up more info conf. With team 🙂
Thanks for sharing all your experiences i know they are personal but i appreciate your points of view! Thanks for being patient with me sometimes i get so frustrated about the docs not showing up or calling back or waiting so long i feel like i reach out about the same things alot.. anyway im currently getting over some awful stomach bug so i need to keep away from my parents for a few days but ill be-on phone with them 🙂 wanted to wish you all a Happy And Healthy New Year!

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@formydad The medical community has a lot on their plates, and sometimes forgets the human element. Many times in the past, when faced with a "professional" who wasn't, or given a choice that I could not easily decide, I will ask that person, "Is that how you would like your family member to be treated?" or, "If I was your favorite cousin, what would you advise given the information we have?" There are times it draws them up short and has them reconsider their approach.
It's okay to be frustrated, and angry, and sorrowful. Most all of us here have been in those same shoes at least once. We are all here to offer support and the lessons we have learned from our own experiences.
Get better soon from that stomach bug! Give your folks a big hug when you see them next, and Happy New Year to you and yours, also.
Ginger

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@formydad

Yeah thanks for all the advice all sounds great- dads back home now they’ve isolated the culture and said they know how to treat infection so they sent him home moved his drain deeper and he has to give himself antibiotic shots think through a pic line- he will be following up soon. I will def be trying to et up more info conf. With team 🙂
Thanks for sharing all your experiences i know they are personal but i appreciate your points of view! Thanks for being patient with me sometimes i get so frustrated about the docs not showing up or calling back or waiting so long i feel like i reach out about the same things alot.. anyway im currently getting over some awful stomach bug so i need to keep away from my parents for a few days but ill be-on phone with them 🙂 wanted to wish you all a Happy And Healthy New Year!

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@formydad I’m so glad that your dad is home. You mentioned that he will give himself antibiotic shots. This is frequently done by a home care nurse. Did the hospital discuss this with you or your parents?
And remember that infection control is extremely important! What information have your parents been given on infection control?

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@becsbuddy

@formydad I’m so glad that your dad is home. You mentioned that he will give himself antibiotic shots. This is frequently done by a home care nurse. Did the hospital discuss this with you or your parents?
And remember that infection control is extremely important! What information have your parents been given on infection control?

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He was instructed how to give the shots- i thought it was a lil strange but he seemed fine with it i know clearing up an infection is extremely important..
this is what my dad said to me from hosp before he went home-
Yes, they say the data is all good, and I will continue with antibiotics at home and follow up at the infectious disease clinic at Barnes. I do believe nurses are Still to be coming over..
Hes going back to work monday… 😳

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That sounds so positive. God is answering prayers

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