There's a light at the end of the tunnel! (Update)

UncleBuddy · December 2013

My brother was hospitalized for the 3rd time in a month. He had 1.5 liters of fluid around the heart. I insisted that he be sent to the hospital of my choice, and it was done. The cardiothoracic surgeon said that the people who removed the clots at the "hospital from hell" left a wire under his heart and it could be why he had so much fluid around the heart. He found a small nick on the heart and put in a stitch to close it. We won't know much more until they analyze the fluid. My brother had the surgery yesterday morning and is already in step down and walking around the halls. I called him before and he sounds like his old self. I am wondering if all of this is worth it. I hate seeing him like this. I think he needs a break from chemo and needs time to "live." Of course, it's his decision. I know his wound needs to heal, but I think he needs some time to just enjoy doing things that he likes. Am I being selfish?

Lin

12/22/13- He is coming home today!! Chemo has been put on hold for another 4-6 weeks. We are all really thinking about quality of life versus quantity. I'm thinking we need to have a discussion with the oncologist.

Trubrit · December 2013

A sweet, UNSELFISH sister

What a ride you, your brother and father are on.

I don't think you are being selfish, how can you be when all you want to see is joy and comfort for your brother.

I pray that you will find your answers, and that not only your brother will find comfort but you yourself.

I pray that you will all have a joyful season.

Chelsea71 · December 2013

No, you're not being selfish.

No, you're not being selfish. I think these thoughts that you're having make a lot of sense. I wish my husband would have spent more time living vs. fighting. Hindsight is 20/20!

You may want to file a complaint. A lawsuit would be extremely stressful. An official complaint may help to hold people accountable for their "mistakes". I'm betting you wouldn't want this sort of thing to happen to the next patient. Unfortunately, in these situations things tend not to change unless somebody raises hell.

Chelsea

UncleBuddy · December 2013

Chelsea71 said:
No, you're not being selfish.
No, you're not being selfish. I think these thoughts that you're having make a lot of sense. I wish my husband would have spent more time living vs. fighting. Hindsight is 20/20!

You may want to file a complaint. A lawsuit would be extremely stressful. An official complaint may help to hold people accountable for their "mistakes". I'm betting you wouldn't want this sort of thing to happen to the next patient. Unfortunately, in these situations things tend not to change unless somebody raises hell.

Chelsea

Thanks Chelsea!

I appreciate your honesty! I'm going to speak with all of his doctors to see if we can hold off or just discuss stopping chemo altogether. I think this is taking a toll on his body.

Oh, I am definitely filing a complaint. Once my brother is out of the hospital, I want to get his records, copy them (one set for us and another for him) and give them to the new surgeon. We will see what comes of it, but I agree, it can't be swept under the carpet. It is a teaching hospital, so who knows what went on in there. The choice of even going to that hospital was taken away from us. This time I was totally prepared and inisistd that he go to the hospital he is in now. He has gotten great care from what I can see. The nurses know about his disability, so they are nudging him a little harder to get him up and about. If they left it up to him, he would veg out and just watch TV. So far I am satisfied with his care and the communication we've received from this hospital.

Thanks

Lin

UncleBuddy · December 2013

Trubrit said:
A sweet, UNSELFISH sister
What a ride you, your brother and father are on.

I don't think you are being selfish, how can you be when all you want to see is joy and comfort for your brother.

I pray that you will find your answers, and that not only your brother will find comfort but you yourself.

I pray that you will all have a joyful season.

Thanks Sue (Trubrit)

I think I really need to talk with his team of doctors and figure out what to do. I know he wants to fight this because he thinks he can be cured. I explained how his cancer is treatable and not curable, but he doesn't want to face that (who would). I won't strip him of all his hope, but I think we need to discuss the possibility of him "living life" not just existing and being so uncomfortable. It's not my place to take that choice away from him, but I think, at this point, we all need to talk about alleviating all this stuff he's going through. Thank you for your kind words. If you met my brother, you'd know why I love him so much. He's a big teddy bear who always has a smile on his face.

Have a happy holiday.

Lin

annalexandria · December 2013

UncleBuddy said:
Thanks Chelsea!
I appreciate your honesty! I'm going to speak with all of his doctors to see if we can hold off or just discuss stopping chemo altogether. I think this is taking a toll on his body.

Oh, I am definitely filing a complaint. Once my brother is out of the hospital, I want to get his records, copy them (one set for us and another for him) and give them to the new surgeon. We will see what comes of it, but I agree, it can't be swept under the carpet. It is a teaching hospital, so who knows what went on in there. The choice of even going to that hospital was taken away from us. This time I was totally prepared and inisistd that he go to the hospital he is in now. He has gotten great care from what I can see. The nurses know about his disability, so they are nudging him a little harder to get him up and about. If they left it up to him, he would veg out and just watch TV. So far I am satisfied with his care and the communication we've received from this hospital.

Thanks

Lin

Filing a complaint is important,

as I believe it will then go on the hospital's official records, and that's important for others to know. I agree with Chelsea that a lawsuit would probably take more energy than it's worth. I researched medical lawuits at one point, because my care was sub-standard and endangered my life. But the fact that I survived made it unlikely that I would win...you have to have pretty major damages (like death or permanant disability basically) to have much of chance in court from what I read.

You are doing a great job of helping your brother, and it seems to me doing all you can. He's lucky to have you!

UncleBuddy · December 2013

annalexandria said:
Filing a complaint is important,
as I believe it will then go on the hospital's official records, and that's important for others to know. I agree with Chelsea that a lawsuit would probably take more energy than it's worth. I researched medical lawuits at one point, because my care was sub-standard and endangered my life. But the fact that I survived made it unlikely that I would win...you have to have pretty major damages (like death or permanant disability basically) to have much of chance in court from what I read.

You are doing a great job of helping your brother, and it seems to me doing all you can. He's lucky to have you!

Thanks Annalexandria

I also believe it's important to file a complaint. I don't want to see this happen to anyone else. I firmly believe that this whole chain of events was caused by that wire. It's a foreign object and he had an infection in the hospital. He has had issues ever since. He is looking a lot better and I think he's getting better help where he is now, but I am guarded after what he's been through. How do you leave a wire inside a patient's chest right under the heart? Geesh!!! You bet I'll file a complaint. First I want to get the hospital reports from both surgeries and I may need my brother to sign for those, so I'll get it done when he's out of the hospital.

Thank you for your kind words. Some days I'm very overwhelmed and think I'm going to lose it. Not only do I have my brother to worry about, but I have an 88 year old dad who has the start of dementia.

Thanks again.

Lin

UncleBuddy · December 2013

Home sweet home!

He is coming home today! He looks great and feel pretty well. 4-6 weeks before chemo can start again. We are all thinking about quality of life versus quantity of life. I think it's time to have this discussion with his oncologist. He said he doesn't want to keep going through this. This has to be his choice. We'll see what becomes of it. I will back him up and fight for whatever he wants to do!

Lin

thxmiker · December 2013

UncleBuddy said:
Home sweet home!
He is coming home today! He looks great and feel pretty well. 4-6 weeks before chemo can start again. We are all thinking about quality of life versus quantity of life. I think it's time to have this discussion with his oncologist. He said he doesn't want to keep going through this. This has to be his choice. We'll see what becomes of it. I will back him up and fight for whatever he wants to do!

Lin

Great News!

There are other options to Chemo. Changes in diet (More veggies less red meat), Juicing (adding micro and macro nutrients), exercise, traditional Chinese medicine (TCM), all aid in the defeat of cancer. My Oncologist just told me had I been doing Chemo we (the Doctors) would be calliing you a win for our treatment. Right now I am NED, with good diet, exercise, juicing and a little TCM. Attitude helps also. I have strong family and friend support.

Just an idea.

Best Always, mike

PS We are sending our thoughts and prayers your way.

UncleBuddy · December 2013

thxmiker said:
Great News!
There are other options to Chemo. Changes in diet (More veggies less red meat), Juicing (adding micro and macro nutrients), exercise, traditional Chinese medicine (TCM), all aid in the defeat of cancer. My Oncologist just told me had I been doing Chemo we (the Doctors) would be calliing you a win for our treatment. Right now I am NED, with good diet, exercise, juicing and a little TCM. Attitude helps also. I have strong family and friend support.

Just an idea.

Best Always, mike

PS We are sending our thoughts and prayers your way.

Thanks Mike!!

I wish I could convince my brother to change his lifestyle. He is intellectually disabled and doesn't get that this could change things for him. I have had doctors, nutritionists, etc. speak with him, but he is not willing to make these changes. I have even told him about the success of many of you, but his answer is that he doesn't like vegetables and won't eat them. He doesn't like "such and such" and refuses to cooperate. You know the expression, "you can lead a horse to water, but you can't make him drink it." That's exactly what I'm facing. I can't force him to eat healthy and exercise, I wish I could. Thanks for the info anyway.

Lin

There's a light at the end of the tunnel! (Update)

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