Update on Becky & Her Mitral Valve Replacement Surgery.

[pellicle]

Hi

it all sounds pretty tough ... (having acted as carer and advocate for both my parents at different times) all I can say is keep up what you're doing but do try to not let it get you too much ... I'm glad you're talking about it here.

... That she still had fluid in her lungs and that skilled nursing will send her back to the hospital.

that's a good idea in my view

My mom has asked to sit up and move, but they won't let her because she is a fall risk.

and yet they want her to move more ... paradox

She said that she had not had therapy which was a lie.

or simply a mistake ...

She told me she may not get back to where she was. Then I was told she won't get better.

its a concern I've had listening to all this so far too...

My mom was very alert and mentally together today moreso than she had been in a long time. She was talking and initiating conversation.

good signs ...

I spoke to her insurance I am trying to get her a new pcp hopefully a geriatrician.

sounds positive

I spoke to her nurse (Evelyn) and she told me that nothing adds up....

these sorts of "mixed messages" and "silo's of information are common. I found what I needed to do for both my parents was to be a project manager (they call it health advocate but I think it goes more than just speaking up). I detailed what I was told by each professional (and in dates) and would question them with regard to that when it seemed that one group did not know what the other groups data was. For instance when Dad would come back from hospital I'd get the details of his case from the treating doctors and (because I could go there) read the notes.

Then when his nursing home was seemingly unaware I could tell them what I'd got from the hospital. Often they did not know that. I found that by taking a cool and professional approach on it (and I have been a project manager in my IT roles) they changed how they approached me and included me in the loop more. Nurses would often just report verbally to me while I was talking to them, and I'd note that down.

...We talked about her PCP saying that she can't keep admitting her to the hospital. The nurse told me that was an odd statement as my mom had been admitted only two times and they have patients who are repeatedly admitted multiple times a month.

perhaps it was spoken in the manner of a person saying something like "we can't just keep pumping the tyres up in the morning" ... sort of exasperated, rather than someone at the bank saying "you can't just keep borrowing money to pay your credit debt"

So I have been lied to again by the PCP.

again, it may not be lies, it may be misunderstandings, it may also be differing policy. Note it and simply ask: "I was told by another PCP that this could be done, why not here"?

project manager hat on ...

I tried to talk to my brother today, but he cut me off. I am in this all alone.

well at least you can talk here ...

Best Wishes

 

[jwinter]

Hello again. I just want you to know that I, and others here I am sure, are following your post and wish you the best.

I would say you are doing the very best you can considering all the circumstances. I am also glad you are standing beside your Mom and not turning your back on her. Hooray! for our children!

I had never heard of a heart failure clinic and that sounds like a good idea.

I deal with the cardios and cardiac surgeons at Billings Clinic Hospital Clinic and hospital in Billings MT. They have a working relationship with Mayo Clinic in Rochester so when they have had any problems with understanding my case they make calls to them for help. Communication seems to be the key in most all of your problems with docs and staff and if they would all just speak to one another it would help immensely. One person states one thing and then another says they don't think so. You need to try the best way you can to get them together on a cut and dried plan of what they can and will do. Talk is cheap. Take notes and have that notebook out in the open. Name names, dates, etc as a way to get them all cornered, if you must. Notebooks with times, dates, and names puts accountability front and center and shows them you mean business. I had a dry erase board in my room and put all kinds of notes on it for the next person I was waiting to see. They kind of go "wow" when you start writing things down and hold them to it.

I am glad your Mom seems to be a bit better. When I got a little "weirded out " being on life support and in hospital for extended time after first surgery one doc said, she just needs to get out of here. He was right! I am not saying your Mom should be going anywhere but you need to give that a little thought also. She is not in her regular surroundings and medicine changes can also throw her for a loop. Just because we, as patients, don't keep all our time lines straight, that is why we need someone to truly speak for us. Now, when I go in for anything I always tell my family.....please just speak for me when I cannot! They do and I know you will....speak for Mom and do the best you can for that is all we can possibly ask for.

Sorry this is so long but as a fellow CHF and AVR patient, I can really say I know where you are. I also took care of my parents, Mom with brain cancer and step dad with Alzheimer's so have been in both you and your Mom's shoes.

Don't give up. There is a special place in heaven (my belief) for what you are doing. Once again, wishing you the very best. Caregivers rock!!

I would address the medical issues you have shared but it would be just another opinion and you probably are on brain overload with all of this anyway.

 

[honeybunny]

Becky, I can’t offer any medical suggestions. Just want to send positive energy for your mother’s healing and continued physical, mental, and spiritual strength for you.

 

[user 17111]

Thanks TominMO.
I really appreciate your kind words and prayers. I try to take care of myself, but sometimes its hard. Perhaps he is not wired for this. The wedge is already there and has been there. I am grateful for your input.

Hi, Pellicle.

I really appreciate all of your insight and responses.

Glad to hear your dad got some relief from that. I am not sure if the pulmonologist meant that in a sort term or at home way.

Hi

these sorts of "mixed messages" and "silo's of information are common. I found what I needed to do for both my parents was to be a project manager (they call it health advocate but I think it goes more than just speaking up). I detailed what I was told by each professional (and in dates) and would question them with regard to that when it seemed that one group did not know what the other groups data was. For instance when Dad would come back from hospital I'd get the details of his case from the treating doctors and (because I could go there) read the notes.

Then when his nursing home was seemingly unaware I could tell them what I'd got from the hospital. Often they did not know that. I found that by taking a cool and professional approach on it (and I have been a project manager in my IT roles) they changed how they approached me and included me in the loop more. Nurses would often just report verbally to me while I was talking to them, and I'd note that down.

Note it and simply ask: "I was told by another PCP that this could be done, why not here"?

Thanks. I haven't exactly been doing that, but I have been talking notes on my computer every evening with dates, times, names etc.

I think I will try your approach because I wonder if they are all on the same page. I met with her cardiology team yesterday and they acknowledge that it is bad, but not that she is near death right now. So I don't know if I should call her cardiologist again or what.

Thanks for giving me a place to speak...

Regards..

 

[user 17111]

Hi JWinter,

Thanks so much for your feedback, suggestions and kind thoughts.

I am trying very hard to do right by her as much as I can and following what she wants.

Yes, the heart failure clinic sounds awesome! I really want her there. Her insurance denied her appeal. I am going to wait until I get the letter to see what they say - so I can file an appeal again. If necessary I will look into maybe supplementing or changing her insurance. I am not ruling anything out.

I think I will pick up a notebook today. You are the 2nd person who has said that.

Wow you have really been through something. I am so glad you made it off of life support. Yes, I considered her not being at home may be a factor. I do want to get her home. I miss her so much. But I would like for her to be able to stand and pivot and she needs a bed. (long story)

Wow so you know what its like from both sides. I appreciate all that you share.

Thanks so much....

I had never heard of a heart failure clinic and that sounds like a good idea.

I deal with the cardios and cardiac surgeons at Billings Clinic Hospital Clinic and hospital in Billings MT. They have a working relationship with Mayo Clinic in Rochester so when they have had any problems with understanding my case they make calls to them for help. Communication seems to be the key in most all of your problems with docs and staff and if they would all just speak to one another it would help immensely. One person states one thing and then another says they don't think so. You need to try the best way you can to get them together on a cut and dried plan of what they can and will do. Talk is cheap. Take notes and have that notebook out in the open. Name names, dates, etc as a way to get them all cornered, if you must. Notebooks with times, dates, and names puts accountability front and center and shows them you mean business. I had a dry erase board in my room and put all kinds of notes on it for the next person I was waiting to see. They kind of go "wow" when you start writing things down and hold them to it.

I am glad your Mom seems to be a bit better. When I got a little "weirded out " being on life support and in hospital for extended time after first surgery one doc said, she just needs to get out of here. He was right! I am not saying your Mom should be going anywhere but you need to give that a little thought also. She is not in her regular surroundings and medicine changes can also throw her for a loop.

.

 

[user 17111]

Thanks Honeybunny. I appreciate that too! Everything helps and counts including and especially support and good vibes.

 

[pellicle]

Thanks. I haven't exactly been doing that, but I have been talking notes on my computer every evening with dates, times, names etc.

that's good, and (being an IT guy) normally use my laptop or desktop for taking detailed notes too, but not in the field. I've found that a B5 sized diary is the best. I take the notes on the day in question and I've found (over the years) that it has an interesting psychological effect on the people I am taking notes with. I often hear indirectly how "Pellicle is really organised" or "Pellicle is really detail oriented" (*inserting my pseudonym from here).

Thanks for giving me a place to speak....

not at all ... this place is a place to speak, I'm just giving you an ear that you can hear is listening and is concerned.

 

[user 17111]

Hi Pellicle,

I went and bought the notebook. I know nothing about sizes. I just googled that and I have some diaries that size. I just got a regular spiral notebook.

Awww hahaha! Those are some awesome compliments. I wonder if I will get the same? You do sound as if you have an ordered mind.

They gave my mom sugar and orange juice. I told them again that she has diet-controlled diabetes. They told me that her pcp never put in the order and they weren’t even checking her sugar levels per her orders or lack thereof. Her nurse tonight and her pca think she should not be discharged Monday. They don’t think she’s ready at all. My mom has a lot of fluid in her stomach and her hips. She has the start of a blister on her side. She did sit at the side of the bed and eat today. She also sat for an hour and 30 minutes just on the side of the bed. We did leg exercises with her like that. I don’t think she can stand or walk because of all the fluid and its making her body too heavy to move.

I have no idea how to change her primary doctor or how to stop them from discharging her too soon.

 

[user 17111]

Hello All,

I just spoke with a nurse with he insurance company who has chf. She said that all of this falls to her primary. She said that outside of my mom's PT the floor nurses can get my mom walking in the room or in a chair to eat at least twice a day. She also said the same thing about my mom’s diet. They will only do what the doctor orders. Her doctor is letting them give her salt, sugar and not treating any of her nutrition issues i.e. lack of iron and protein and then wants to discharge her Monday. Two nurses told me they didn’t think she was ready to go home. The nurse said I should listen to the nurses who think she should stay. She thinks that the pcp needs to be changed and that she is dropping the ball on my mom. I think th pcp is setting my mom up to fail. She also gave me some tips on how to appeal the decision on the out of network heart clinic.
.

 

[Paleowoman]

They gave my mom sugar and orange juice. I told them again that she has diet-controlled diabetes. They told me that her pcp never put in the order and they weren’t even checking her sugar levels per her orders or lack thereof.

Hi Becky - does your mom have a blood glucose meter so that you can test her blood sugar level and show the nurses and doctor. I don't know the system in the US for changing a primary care physician - is the pcp the same as your mom's GP ? If not, could you contact her GP ? I hope your mom gets better care very soon.

 

[user 17111]

Hi Becky - does your mom have a blood glucose meter so that you can test her blood sugar level and show the nurses and doctor. I don't know the system in the US for changing a primary care physician - is the pcp the same as your mom's GP ? If not, could you contact her GP ? I hope your mom gets better care very soon.

Hello Paleowoman,

Yes, she does have a glucose meter. She also still has an insulin pen and her old diabetes prescriptions. Yes, the PCP is the same as her GP? PCP =GP. Thanks for the tips. I hope she gets better too.

 

[Paleowoman]

Sounds like your mom needs a different PCP as others have said. Of course the nurses should be giving the PCP reports which the PCP should act on instead of passing the buck.

Mind you, when it comes to diet I'm not surprised at the hospital - I know a Type 1 diabetic who is also a retired doctor who was given all sorts of junk foods when she was in hospital. Anaemia is common after heart surgery too.

Being at home as, jwinter wrote, could benefit your mom if she/you had the right support and help. If you don't have an appropriate type of bed can you hire one ?

 

[user 17111]

Hi Paleowoman,

Yes, I am trying to figure out so many things. I want to change her PCP and file a complaint against her.

Wow that is all awful. So I guess ignoring diet orders is common.

I will contact her cardiologist when I get space. I didn't know that anemia was common after heart surgery. However I know it can be treated and they are not doing that.

No, I don't have the money for a bed. I have to go through the insurance process to get one and that requires the support and info from a PCP. Also, she can't stand. I would not be able to clean her when she uses the bathroom if she can't stand.

Thanks again...

 

[OldManEmu]

Hi
I have been reading your comments regarding what appears to be a very poor handling of your mother’s situation.
I am do not know her age so this may be playing some bearing on it as in Australia the treatment of over 85 patients does not appear to be as interventionist as it would be for younger patients.
Having and ejection fraction of 15% before my first surgery I can say this is a very bad place to be and her treatment is nothing like what I received.
I gained 11kg of fluid in the two weeks before surgery was scheduled; this was treated with IV lasix, extreme fluid restriction 1 litre a day and no salt diet.
I was also on lots of different meds for heart failure in this time which appeared to change almost by the day.
This managed to strip 9KG off in a week and I was being weighed every day.
Post surgery I was on a fluid restriction of 1.5 litres a day and a low salt diet as well as a number of medications, this lasted 6 months until my heart remodelled.
Which medical professional is taking ownership of her heart failure and implementing a written plan and monitoring her progress against the plan?
Your mother appears to be just going from one uncoordinated crisis to another and being treated in isolation in an epos odic manner.
Have they explained to you how they are monitoring her fluid load if not by weighing?
Why are they not restricting her fluid intake and not placing her on a low salt diet?
From your description of her normal weight of 185 and now being 215, she is very unlikely to loose 30lb of fluid with oral Lasix and nothing else.
While she is carrying this fluid load it is placing a greater load on an already weaken heart compromising its ability to remodel.
Until someone takes ownership of her heart failure she will struggle to make progress.
I think you are wise to make written notes of all the interactions you are having regarding your mothers care, I would be letting the people you are interacting with know you documenting it as this at least alerts them to the fact that they are accountable.
I am fortunate that my cardio runs two specialist clinics, a heart failure clinic and a valve clinic.
I still attend her valve clinic.

 

[user 17111]

Hello OldManEmu,

I will visit Australia one day.

She just turned 77.

Thanks for sharing your experience. So you were where she was... literally. I didn't know that your heart could remodel. I have never heard of that.


"Which medical professional is taking ownership of her heart failure and implementing a written plan and monitoring her progress against the plan?
Your mother appears to be just going from one uncoordinated crisis to another and being treated in isolation in an eposodic manner.
Have they explained to you how they are monitoring her fluid load if not by weighing?
Why are they not restricting her fluid intake and not placing her on a low salt diet?"

I think this is her primary who wants her to go on hospice. And no one has discussed any of this with me. I have no idea what is going on.


"From your description of her normal weight of 185 and now being 215, she is very unlikely to loose 30lb of fluid with oral Lasix and nothing else.
"While she is carrying this fluid load it is placing a greater load on an already weaken heart compromising its ability to remodel."

She is on iv lasik. That is the only thing that I know for certain. I had no idea that her heart had to remodel.

"Until someone takes ownership of her heart failure she will struggle to make progress."

I wish I knew how to make this happen I am trying my best.

You have a really talented doc. I wish I could find similar for my mom.

Thanks for the feedback and for sharing your story.

 

[Paleowoman]

Hi Becky - things are obviously very different in the US from the UK, but I would have thought for you to change your mom’s PCP you would need to get some kind of written permission from your mom that she wants her PCP changed - just a signed note should do, also ask your mom to give permission for you to discuss her medical problems with the PCP too (I have permission to talk about my adult son’s medical problems with his GP as he has autism spectrum disorder - I got this permission by getting him to write a note which is now on his medical file). I had a look online about how to change PCP in the US and it seems to depend on what type of health insurance you have. I just typed into google “how do I change primary care physician” and got several results - best of luck with that. A serious complaint may be worth taking against your mom’s current PCP but first of all get your mom better.

 

[jwinter]

Oh how I feel for you in this predicament and promise to make this short.

I had a horrible PCP and we were getting (just like you) NOWHERE using him. In the hospital I saw several " Hospitalists" and told them how I felt about my primary. Well, let me tell you it did not take long and I had a different one. So if you can just find the right person to help you it is surprising what can happen. Patient advocate also maybe?

I had never really knew how the system got these people as we use to go to the doctor and that was that. Now you have to have a primary, have to see a hospitalist because doctors don't have enough time to see everyone, and insurance companies make our decisions? WTH? I am the queen of appeals and they sometimes pay just to get ME off their backs. I could go on all day but wont bore you.

Stay strong and keep taking and writing notes right in front of all who step in Mom's room.

 

[pellicle]

.... Patient advocate also maybe?

I had never really knew how the system got these people as we use to go to the doctor and that was that. Now you have to have a primary, have to see a hospitalist because doctors don't have enough time to see everyone, and insurance companies make our decisions? WTH?

this is indeed the truth of it, and why I always recommend second opinions and asking hard questions. There are occasional voices here who essentialy say "you shouldn't complain about your doctor" because they know best.

Well that isn't me ;-)

 

[user 17111]

Hi Paleowoman,

I am her power of attorney. I can act on her behalf when she is incapacitated. She can change her primary over the phone. However, we have to find someone in network and is accepting patients and who would have seen her in the hospital. I definitely will complain as soon as I can.

Hi Jwinter,

I wish I had your tips on how to win an appeal. I appreciate you and all of your input. I am definitely taking notes on everything.

Hey Pellicle.

 

[user 17111]

Yesterday was hell. It was a 14 hour day. I tried to catch her pcp and she didn't show up. She issued discharge orders and I called her to ask if she could stay another week. She told me no and that she needed skilled nursing rehab. That more time in the hospital would make her weak and that rehab was the best thing for her. I was stumped especially since she said she was near death last week. I told her I needed to think about this. She told me it wasn't my decision.

I called and appealed the decision with an outside party. I talked to the nurse manager and the nurse supervisor and I tried all day to get her another PCP. It was hell. They were really pushing this death thing. And they kept stressing the PCPs prognosis and they kept listing all the infections she could get etc.

I started the process to change her insurance over so she could go to the heart failure clinic. Then they moved her to another floor where all the "better" patients are.

Her PCP called me and left a message saying that she would have given extra days in the hospital. LIE She saw where I appealed the decision and that I wanted to change her as her PCP, but she told me that she would not voluntarily go as her PCP and would continue to see my mother.

We still haven't found a new PCP.

All the nurses on her floor think that she was not ready to go home because she has too much fluid on her.

God this has been stressful.

Today they denied the appeal. I told the guy to go ahead and push to switch her insurance. I asked if they would send her by ambulance to the heart failure clinic. They would not. I called her health insurance they said they would cover the ambulance 100% if they admitted her even though the heert failure clinic is out of network and the doctor/hospital would not do it.

I found out that they did not give her any physical therapy for the first week she was there.

So I told them to give me home health supplies and let her come home. Then when she gets here I will send her to the ER at the heart failure clinic. Or whatever they suggest. I have no idea how to protect her home because these bills will be huge and we can't pay. The new insurance won't kick in until march 1st.

I asked for a medical release form and they took five hours to give it to me - so the medical records department was closed. They say they put it in her chart to be sent to the heart failure clinic. I don't know.

I called the heart failure clinic all day and they were like the couldn't help me until one of the two conditions were met. 3

I asked my mom and she wants to go to the new hospital which is a teaching hospital even if we incur debt.

The only person who came to talk to me was the pulmonologist and he said this was all her heart. Not her lungs. He said she is not gaining any more fluid on her, but she is not losing any fluid either. Her hips and thighs have stretch mark like welts all over them from the fluid on her.

I hope I am doing the right thing. I fell like the extra fluid needs to go, but I don't know. I am scared she will get sick at the new hospital.

She ate her meals at bedside today and she stood up three times and shifted to the right once with PT.