Nancy (Eden Berry winner) sent me a photo of her finish of my 1776 freebie.
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It's finally warming up, but nowhere near how hot my mom's getting.
Five weeks and still no credit or return acceptance from Woman Within, but not important right now. Never again.
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My eyes have not been this bad and unable to stay open in light except when the Sjogren's originally hit. I managed to get the large bottom right flower completed before that happened.
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I honestly do not know where to turn. Original doc said he could not open blockages, must go elsewhere. He sends her to CC. After the kidneys failing because of contrast dye while continuing on 120 mg of lasix after, she is in trouble. And then the cardiogenic shock, a second aortic valve, over a week for kidneys and heart to recover, send her back here. The doctor said the PAD procedure could be as outpatient in the near future (one small ulcer at that time). Let kidneys rest a while before the contrast shuts them down again. Five weeks later, after her leg starting blackening (covered, we did not know), the toes continued which was concerning. Five weeks? I tried to get appt with the doctor who would treat. Called and called to move it up. Horrified when they removed the wrap. The doctor that originally sent her from here, called me (I didn't request it) and laid into me as I was doing my best to be pleasant. I did not expect him to proceed when he could not, I did not accuse him of failure, I said CC said it could be done as outpatient. Still as nasty as hell, he stated that he did his part, sent her there, they did nothing and sent her back. I explained she almost died and needed the valve ..... not his concern. He did his part, he's not doing it again, he sent her once. PCP said CC should have scheduled. Back and forth, each passing the buck. We are in the same boat again. Not future schedule, the right leg is starting to deteriorate, I am getting no where. Her PCP told me (as before) see what you can do. Appt for review is not for three weeks. No return calls yet. I am looking into a clinic in Ohio, but with a bad heart, I don't know if they will do it. University hospital in Cleveland has a Limb Saving program, only a few blocks from CC, I have not heard back.
I was not sleepy last night at 7pm, I was at the end of sanity. So what do I do? I am not a doctor, but I am basically in charge of procedure scheduling and have been doing my best, but getting nowhere. She asked her PCP of 35 years to call and move things up, he said "did they say that would help?" and no calls were made. Yet I've received disturbing calls from him to say her toes are self amputating and she will lose the leg, probably not survive the surgery, might as well go ahead with the risk because she's going to die anyway. Carole made me promise to not lose my temper with her docs. I do not understand at all what is happening. And yet overwhelmed with guilt.
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19 comments:
You have no reason to feel guilty, but I know. Easier said than done.
You have gone above and beyond for Carole. Imagine if no one was advocating for her.
So very sad...and my heart breaks for both of you.
Sorry about Carole I send prayers for both of you. If you paid with credit card see if they will dispute your missing returns.
Oh Marly dear ~ guilt should not be on your list...you have gone beyond trial and endurance to support Carole and line up medical support for her....The conduct of the
medical community is disturbing, to say the least. Evidently, compassion is no longer a part of the oath they take because so much time has been spent in learning how to cover
one's rear and bouncing the ball between teams. Shame on them,. There must be a board of ethics to whom you can appeal for immediate attention and help. I am so sorry and only hope all the prayers being offered for you and Carole will result in a solution to this dilemma. Please take care of yourself.
Years ago I, along with the rest of my family, watched in horrified helplessness as the pediatric gastroenterology department of Robert Wood Johnson hospital tried their best to murder my infant nephew while simultaneously gaslighting my sister in the most appalling example of abuse of power we had ever seen.
Every attempt to get help for my nephew was blocked with sadistic glee. Appealing to my sister's long-time primary care doctor who sent nephew to RWJ in the first place, asking him to intervene, was met with shrugs and a verbalized desire to "not rock the boat".
Eventually a doctor my father knew essentially kidnapped my nephew and had him transported to Children's Hospital in Philadelphia, where they managed, barely, to save his life and eventually to correct the problem but not before my nephew suffered permanent damage. To add insult to injury, the gastro doctor at RWJ filed child abuse charges against my sister, saying that the only thing wrong with my nephew was that his mother had Munchausen by Proxy. Charges, btw, that were dismissed instantly and the social worker filed a complaint of Unfounded Reporting against the doctor, which of course was ignored.
It's terrifying when you do your best and those in charge treat you like garbage. It isn't your fault. There is only so much you can do against an evil empire. We can only hope there is some kind of divine retribution or karma waiting for those who torment helpless patients and families. My thoughts of relief, justice, and compassion are with you, little as that does in real life.
P.S.,
When my sister confronted her primary care doctor, saying he was willing to let her son die so he didn't have to rock the boat, he shrugged again and said that that was an uncharitable way of looking at it. This was a man she-- and other members of our family-- had been going to for most of their lives. He attended the same church as my mother. Some Christian, huh.
The only satisfaction we got was leaving his practice en masse.
Marly, I was trying to follow your blog. Is Carol home/nursing home? Sounds like docs not communicating. I went to CC website, searched Patient Advocate line. They have a Patient Advocate Department (Ombudsman). Go to CC website, in search bar, type Patient Advocate Line, looks like few at different CC hospitals, I don't know which one you go to. You can call the hospital she was at and ask. Long shot, tell them Carol was patient there, let them know situation, they may be able to give advice, guidance, do something. I am so sorry this continues and no answers. It's normal to feel guilty, but you have and are continuing to do the best you can. And no, you should not be having to schedule appts.
You have done so very much for Carole for years and it is so sad to see your having to bear the brunt of all the decisions on her behalf as your own health has issues. Wish there was someone else to help share the burdens of all the decisions you've been having to make.
Still thinking of you constantly.
I'm so sorry Marly! There's only so much you can do when the professionals drop the ball. I'm going through a similar thing with two of my uncles. At the end of my rope I scheduled two phone appointments at the same time and put the two docs on a conference call together, they weren't happy but it definitely made some progress. Crossing my fingers for you that Carole can get some solutions.
Marly you are doing all you can for Carole so don't blaim yourself of the mistakes the doctors are making.
Perhaps you could try what anymous is saying--try the Patient Advocate Line of the hospital and hopefully they can help you.
Still sending prayers for you and Carole and a big hug to you,Truus from Holland
Only God knows how all of this will turn out for Carole.
You have done your utmost to help her and her family. Don't you dare feel guilty about anything.
Please take care of yourself and your beautiful Missy.
Sending thoughts and prayers for all concerned, except the nasty doctors.
Charlotte in Va.
The system is failing both of you. 🙏🏻
You have done, still are doing so much for Carole. Yet the system seems to think not enough, or wrong things, but not much help sorting it out. I have no idea what I'd really do in your situation, but I think I'd contact the CC ombudsman as 2nd anonymous suggested. It seems like way too much attention is being paid to "should have", not enough to what the next step is. Even though they may not be able to do anything about Carole's PCP, maybe they'd have advice on how to handle it? There's a very fine line between straight talk on what a person's condition and chances are and being rudely blunt, it sounds like the PCP crossed it. Time to contact the state medical board or whatever it's called, or might that cause more problems and get Carole dropped by her PCP and others??
And for all the stress from that to be trashing your health even more... and not just physically now... You have nothing to feel guilty about, you've busted your behind trying to do things that should be taken care of by the medical teams. They are the failure point IMHO, not you. ((((((((hugs))))))))
I know how oyu feel when my father was dianosed with cancer. MY mother immediately shut me out yet expected me to do the work.
YOur situation has gone on too long. Call the board of health, the state licensing board, etc - in other words, everything at a state level for both PA and OH. THen find the your local/semi-local tv station and ask for their investigative reporter, both locations if necessary. Call your state congress person, then your national congress person. (I assume that Carol is on medicare) and keep going. THe back and forth is eating into medicare coverage and probably causing extra bills, then again there may be other kinds of medicare abuse as well.
FIrst, get everything (info) togather in one "package". The package goes to everyone you contact. Make sure you also have one that is electronic so you can email. Update as needed but make sure that each copy going out to an organization/person is the same.
I hope that you have ket good notes. YOur blog will certainly have some of the problems documented.
Good luck.
If she has another CT scan get them to do it without contrast. A contrast agent nearly killed me once, and now I refuse them. Even when I had severe diverticulitis the docs saw what they needed without contrast. You can refuse it.
I can only surmise that someone fears a lawsuit. Because her issues are so complicated and compromising, avoiding her high-risk issues seems to be the chosen path. Contacting an advocate may be the wisest path right now. Neglect may be considered. My advice, do not to mention lawsuit. If you do, every piece of documentation will be barred to you. I have no answers, only empathy. I went through a situation just like this with my Mother. It ended up having the doctor lose his license. If you need specifics, I can share what I know. Take care dear Marly, you are too valuable to lose heart. Your dear sister's path may a long one. Thoughts and prayers.
Ahhh....dear Marly. My heart hurts for you. Of all the weights on your shoulders right now, guilt should not be one of them. You would win the sister-of-the-centtury and advocate-of-the-century award if there were such accolades. I have no sound advice to give you...in fact, not even any unsound advice. It just seems that once people reach a "certain age," they become dispensable and unimportant. And making the medical profession accountable is exhausting and most usually fruitless. There is just no accountability any more...anywhere...if there ever truly was. Sorry....I meant to give you a bit of encouragement and it seems I have failed miserably. Just know my prayers continue. ~Robin~
PS...on a lighter note...funny you posted that photo of Nancy's 1776. I just pulled that out of my stash the other day and plan to take it up as my next stitch.
Oh Marly, I am so sorry that you are going through such difficulty getting answers. Continued prayers for you all.
It's been 5 days since your last post, so afraid to know what is happening.
Your sheer will wants to make things happen, but there are medical/dr
boulders blocking the progress you would like to happen.
Some Dr's don't realize or care that sometimes not doing one small thing
has a major impact.
Good Wishes to All.
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