Update on Becky & Her Mitral Valve Replacement Surgery.

[user 17111]

Hello All,

This is Becky's daughter. I am writing to give an update and to hopefully get some information. I know that she was on this forum and another one prior to her MVR.

1. My mom declined prior to the surgery. She did not exercise with home health or eat properly before the surgery. She got so weak she couldn't walk so they admitted her to the hospital at her cardiology appointment on Dec 3, 2018.

2. They forced her to exercise and to eat. She had the replacement on Dec 15. The surgery was supposed to last 3hrs, but it lasted 6. The surgeon said her valve was in the top 5 in terms of how bad it was. They had to rinse her heart out. They gave her a Medtronic porcine valve and went in through her ribs.

3. The surgery went well, but she had a lot of cognitive/mood issues. She had two blood transfusions at the hospital. She was released to a rehab center. She was walking when she left the hospital and she was walking the 1st week at rehab, but she started to retain a lot of fluid and declined. She had two more blood transfusions at the rehab and they said that she was malnourished. She had huge oozing blisters all over both her feet.

4. A lot happened at the rehab center and she was abused and sedated a lot. They discharged her by ambulance home. She couldn't walk or move. And they put her on hospice. I didn't know about the rehab abuse at the time it happened.

5. I had to release her from hospice and readmit her to the hospital on Dec 10th. They had to pull fluid from her with a needle twice in my presence. They took 1400ml each time. Her legs and feet are slowly going down.

6. Right now she is still weak. I try to get her to walk when I am there even if it is from the bed to the chair and she still has moments of confusion an agitation.

This is so stressful and I am hoping that she will get better. I am in the process of filing a complaint against the rehab center. They did not notify her doctors of her decline and they did not do all they could to treat her.

Any light that could be shed on what may be going on with her would be greatly appreciated. Thank you all for all of the help and advice you have provided.


Becky's Daughter..






,

 

[spartangator]

I don't have any input on what could be happening, but I do want to send some admiration and affection for all you're doing amidst very difficult circumstances. I'm sorry you're dealing with all this and that your mother was treated so poorly. I hope others will come along with more useful information and please hang in there in the meantime.

 

[pellicle]

Hi there Daughter of Becky

I'm sorry you're going through all this, I know it can't be easy (my mother had dementure and I was the only family member involved).

With respect to the heart valve surgery and recovery, if I may paraphrase "you're heart needs to be in it" .. if for some reason it isn't then recovery isn't going to be easy. Is your mother suffering also from grief (say the loss of your father) some time before the decline?

If she doesn't come around then ... well it must come from her energy. I know that from my own heart surgeries I've needed to put in the effort to be where I am now (twice),

 

[tom in MO]

You said you "released" her from hospice. Not sure what you mean.

I would guess that if your mom decided to be in hospice, she thinks it's time to move on. That's a hard decision to make and even harder for her family to understand. Moving on is not a failure, but a natural process. You may want to seek spiritual or psychiatric counseling to help you understand and feel comfortable with the hard decisions coming up.

 

[user 17111]

Thanks Spartangator. I appreciate the support.

Hello Pellicle. No, she hasn't had an major losses prior to this, but she is having a lot of confusion and cognition issues. She was fine before, but they have been playing with her mood meds i.e. withholding them, or giving her additional sedatives without my permission. So she is sometimes confused and out of it.

Hello Tom in MO. I told them to take her off of hospice. I had to sign a piece of paper to take her off of it so she could go to the hospital without being charged for everything. My mom did not decide to be in hospice. That was something the rehab center put together and they sold it to me as being better than home healthcare or any other alternatives. My mom was fine the first week and by the second week she was unable to do the rehab, sleeping all the time, and barely together mentally.

 

[pellicle]

Hi

No, she hasn't had an major losses prior to this,

I was meaning physical ... as you wrote:

1. My mom declined prior to the surgery. She did not exercise with home health or eat properly before the surgery. She got so weak she couldn't walk so they admitted her to the hospital at her cardiology appointment on Dec 3, 2018.

so perhaps she didn't have a habit of exersize and its exersize that I was referring to needing to put effort into.

On the cognitive, some older patients suffer from cognition issues worse than others. Even younger patients suffer from it to some extent

some background readings :

https://www.annalsthoracicsurgery.org/article/S0003-4975(02)03651-2/fulltext

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547425/



I hope that she starts to come good ... is her current care aware of this?

 

[user 17111]

Thanks Pellicle,

I did misunderstand you. The thing that upsets me the most is that she could do the exercise before and she chose not to.

I made them aware. It is so complicated and there is so much going on.

They are really slow to try and get the fluid off of her. Today she can't wear the pants she wore yesterday. I asked about her weight and the aide told me they only weigh once a week. I talked to the nurse and she said it could take a long time to get the fluid off and she has only been there 2 days and to give it a week.

By that time my mom could be drowning internally and back in the ER. CHF patients have to weigh everyday and their lasik and water intake is adjusted according to their weight from day to day. You don't wait a week.

This is what I am dealing with.

Thanks for the article and the kind wishes.

 

[pellicle]

Hi

... The thing that upsets me the most is that she could do the exercise before and she chose not to.

it is heart breaking I'm sure ...

It is so complicated and there is so much going on.

it is, and all I can hope for is that you find some good suggestions here from alternative viewpoints on the matter

I talked to the nurse and she said it could take a long time to get the fluid off and she has only been there 2 days and to give it a week.

that seems a reasonable target ... what sort of weight are we talking (in terms of gains)

is she on any medications as well (like Lasix)?

Make sure you look after your own health (and mental health) at this time too

Best Wishes

 

[jwinter]

I have been following your journey and seems like there have been lots of ups and downs. As a family member and caregiver this has to be exhausting. My kids were good to call, visit, and inquire with nurses and doctors on my kind of rocky journey. You are very good to be there for her. I always said before surgery and after we all need a voice to speak for us sometimes, when we can't do it ourselves. It was very important to me after everything was done to know they were advocating for me.

I also have chf and my primary care doctor wants me to weigh each day and adjust my lasix accordingly. To be honest, I don't get a huge relief using this method. Yes, I pee quite a bit and it gives me a huge sense of urgency when I have to go but scale doesn't show rapid loss. I told pcp what works for me is to weigh 2 times per week and a person really can tell in between when that fluid starts to build up. I try to do more small exercises that are geared for edema. Youtube has a bunch of them but I will do ankle swivels, both directions, while leg is lifted and standing holding counter-top. When sitting in chair I also do the swivels. When starting my day, as I wait for coffee to brew, I stand with feet flat then raise heels up and then down and keep doing this about 20 times. Repeat here and there throughout day. (you could stand beside her and do with her as encouragement) I also try to sit on floor with legs up in the air for about 15 minutes(sit close to wall to help hold them up) I could not stand those dang elastic socks but finally bought a pair of larger than normal ones and cut the feet out of them. They still compress but don't cut into my legs and ankles. NOW, here is the real deal.....it is very difficult to exercise or even feel like doing them with all that water on a person so be gentle with her about this.

My first surgeon told me that since time began that when the human body is hurt (surgery itself) the first thing it does is hold water. As the body heals it tends to start coming off. I totally agree with this. I have some other issues going on and as they are healing now my fluid is finally starting to come off. I even had a small leaking of that fluid on back of one leg. Yuck! I have dropped over 20 lbs of fluid in the last month and it seems to be staying off for the most part. Still carrying some water but you can imagine what lugging those extra pounds felt like? You don't feel good in the first place, they want you to exercise more, dragging all that extra fluid around is like lifting cement itself.

I cannot address the mood drugs or her drug protocol but changes in that alone, could cause some of her problems.

You are doing so right in helping your Mom and I want to say a big thank you to you and other children that help us through this. Family is priceless!

 

[user 17111]

Hi Pellicle,

Thanks for being so kind, supportive, and informational.

that seems a reasonable target ... what sort of weight are we talking (in terms of gains)

is she on any medications as well (like Lasix)?

Make sure you look after your own health (and mental health) at this time too

She is down to 215 and a lot of her blisters have drained, but her feet and ankles are still bandaged. They haven't weighed her since Wednesday and on Wednesday she was 215. Her baseline before the surgery (Nov 2018) was 178-184 which fluctuated according to the fluid she retained.

She takes 40mg of Lasik every day and that is all. I don't think she weighs 215. Her legs are better, but they are still kind of shiny and her tummy looks bloated.

I am trying...it is hard because in seeing after her I don't get much sleep or get to eat regularly.

____________________________________________________________________________

 

[user 17111]

Hi Jwinter!

I appreciate the kind words of support and encouragement. And for sharing your experience. My mom is not that mobile to get on the floor, but those other exercises sound really great. I will Google them for when she gets home.

I appreciate your feedback....

 

[user 17111]

The rehab center ended up sending my mom to the ER last night. They put her in the ICU. She has gained 6 pounds of fluid on her. She has fluid on both lungs and she has plueral effusions.

I am getting angry because her PCP asked would she want to be on life support. I said yes. My mom has an advanced medical directive that states all of her wishes and she wants them to pull out all the stops to help her. Then she mentioned hospice. Then she says well we can't keep admitting her and I keep thinking why don't you guys get her to her baseline first before discharging her? Then why can't the rehab centers hold her salt and adjust her lasik afterwards?

This is making me very angry. No one will do theIr part.

They tested her and said that she had an infection on her lungs. Which she had the last time she was in the hospital. Can no one find the root cause of the fluid build up?

Her PCP really took up for the rehab center saying there wasn't much they could do. I am angry as that is a lie. They could have called the doc that night and tweaked her lasik before it came to this.

They really do try to throw older people away and this is pissing me off.

 

[pellicle]

Hi

.... She has fluid on both lungs and she has plueral effusions.

as you perhaps know this is a symptom of some sort of congestion in the arterial return of blood. If the blood can't flow properly the blood vessels allow it through out into surrounding tissue (it is more correct to think of the blood vessels as being a sort of very tight mesh net not a water proof plastic tube. Big molecules like hemoglobin and the various other stuff can't get through this, but the plasma can ... and does.

So while we can ameliorate the symptoms with Lasix its not actually a solution (its a band-aid under which we hope the body will heal itself when we're not looking). If the body doesn't heal (which it isn't in your mothers case) then the hospital does need to look into this further.

Its common post surgery, but it commonly goes away ... it hasn't so now the next stage is needed

I am getting angry because her PCP asked would she want to be on life support.

its a common question and just like you asking things here for expediency they may have just asked you because they didn't have ready access to her document.

I know it feels bad (I recall when they first asked me if my mother was to be "marked as not for resus" when she was in hospital with advanced dementure.

Then why can't the rehab centers hold her salt and adjust her lasik afterwards?

as I mentioned above its often not that simple, the body is a complex set of systems ...

This is making me very angry.

Its important to not get angry (no matter how you feel) because that will only interfere with your ability to make cool headed logical analyses of the problem and offer suggestions or alternatives ... you have to become the director or manager of this. Do NOT just sit back and expect them to "do theIr part" without inputs from you. At the very least they have other patients and a very high demand on their time (less time than you to think about the alternatives).

By coming here you open up yourself to the inputs and experiences of many others who potentially may have good inputs (better perhaps than mine).

They tested her and said that she had an infection on her lungs.

This is not uncommon, esepecially if it sits there for some time and isn't "moved around" by the normal breathing of the lungs and the circulation of blood. We aren't made for being in bed, we're so made as to be active and pushing ourselves.

They could have called the doc that night and tweaked her lasik before it came to this.

My view is that if the bandaid isn't working, don't just put a bigger one one ... look for why

Best Wishes

 

[user 17111]

Hello Pellicle,

Thanks for the response and information.

I asked for the pulmonologist to call me as I can never catch him at the hospital. So I need to ask why the fluid is accumulating and what can be done about it?

Right now she is better, but weak. They are going to give her PT soon.

 

[user 17111]

I spoke with the pulmonolgist and he said the congestive heart failure is the cause of the fluid. He was trying to discourage me from other procedures for pleural effusions, but I am not ruling them out.

I spoke with the cardiologist and I was told pre surgery her ejection fraction was 47% which they thought would improve after the valve surgery. It didn't. It dropped to 15% where it is now. They also have no reason why it dropped.

They think she needs to move more. They also said her blood protein is really low and that is allowing the edema. She is also malnourished and has anemia.

 

[pellicle]

HI

I spoke with the pulmonolgist and he said the congestive heart failure is the cause of the fluid.

well then that's the "why" elucidated (as well as the other bit about blood protein)

He was trying to discourage me from other procedures for pleural effusions, but I am not ruling them out.

what other procedures and why is he against them?

I spoke with the cardiologist and I was told pre surgery her ejection fraction was 47% which they thought would improve after the valve surgery. It didn't. It dropped to 15% where it is now. They also have no reason why it dropped.

well that's not good ... has there been examination of the valve (say MRI and Ultrasound) to identify if it was correctly plalced?

They think she needs to move more.

well that's the current thinking (and I agree with it. They get you up and walking now right after surgery, while on my 1st and 2nd they hadn't adopted that. However if she's averse to doing it it may also be an indicator of "something else" (which may be psychological or physiological)

They also said her blood protein is really low and that is allowing the edema.

yep ... that makes sense ...

She is also malnourished and has anemia.

not helping matters ... I'm concerned for a general spiral down if this isn't corrected.

 

[user 17111]

Hello Pellicle,

The other procedures were inserting a catheter into her lungs with a drain attached so she can drain fluid at home. And the other one was a surgery that he claims must use general anesthesia, but I read online can use local. It involves putting a talc into the plueral space to seal it so that no fluid can get inside.

They said that the valve was functioning properly. They did not say how or when they looked at it.

Yes, she is eating well. She eats all her foods, but I wonder if the fluid in her stomach is preventing absorption?

 

[user 17111]

Today was tough. This morning her primary called me. She started by telling me that skilled nursing would not measure her salt intake or weigh her everyday. That she still had fluid in her lungs and that skilled nursing will send her back to the hospital. That my mom was lying in bed and doing nothing. My mom has asked to sit up and move, but they won't let her because she is a fall risk. She said that she had not had therapy which was a lie. I was there both times when PT got her to stand and he legs are heavy bc I shifted them. I helped her to get up on the 6th and today the PT with an assist got her to stand multiple times. She told me she may not get back to where she was. Then I was told she won't get better.

My mom was very alert and mentally together today moreso than she had been in a long time. She was talking and initiating conversation. She is coming around and back to herself. I told my mom what her primary doctor said and she was shocked, worried, and very upset. She said that hospice is not what she wants.

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

I spoke to her nurse (Evelyn) and she told me that nothing adds up. She told me that my mom's ejection fraction can improve. That she can be given meds to improve ejection fraction. She said that they could treat my mother's low blood protein, but no doctor gave the order for her to have Ensure or similar. We talked about how coreg can improve ejection fraction and she was taken off coreg and put on metropolol. 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. She said nothing is adding up.

I spoke to the lady at a different skilled nursing facility. She told me that they currently have chf pateints and that whatever her pcp orders - they will do. If she needs to be weighed everyday, no salt, lasik. So I have been lied to again by the PCP.

Her current doc is an interventional cardiologist. I think she needs a congestive heart failure specialist and that is at a nearby teaching hospital that is out of network. They even have an advanced heart failure clinic. I am having a heck of time trying to figure out how to get her there. They also have a facility about 2 hours from where we live, but my car is not good enough to make it there and back multiple times.

My mom was so hurt and the look on her face almost killed me. I keep telling her positive things that I will fight for her – I will try to get her all treatment like she wants - that she will get better.

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

 

[tom in MO]

Sorry about your troubles Becky. I can't offer much help due to my ignorance. I can offer my prayers and the statement that you are doing the best you can and more than most. Don't forget to take care of yourself, eat, drink and sleep. Per your brother, he may not be hardwired to handle what's going on and if so denial could be the only thing he can do. He will regret it later. Don't let this drive a wedge between you two. Good luck.

 

[pellicle]

Hi

Hello Pellicle,
The other procedures were inserting a catheter into her lungs with a drain attached so she can drain fluid at home.

my dad had this done although it was not in a way that allowed him to return home. It made a big difference for him and he pepped up a lot.

but he did say it was painful...

And the other one was a surgery that he claims must use general anesthesia, but I read online can use local. It involves putting a talc into the plueral space to seal it so that no fluid can get inside.

I've heard of this but that's all ... I can know no more about this than you could also learn by googling it.

They said that the valve was functioning properly. They did not say how or when they looked at it.

well that's a good thing ...

Yes, she is eating well. She eats all her foods, but I wonder if the fluid in her stomach is preventing absorption?

they can tell that by examining her stools (which I assume they have done), I'd have thought that to be uncommon (given our stomach gets fluid in it every drink we have, and it needs fluids for the way food is absorbed).