Deleted
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Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 15, 2019 15:29:52 GMT
You have my empathy. I do understand about the slap in the face when you’re not expecting a dr to say what they say and a husband to react the way they do. My DH has stage 4 CKD, but his numbers have been steady for a year or so. He saw his fistula surgeon in early Jan ‘19 and was told everything was great, the fistula is ready, but with his numbers being so steady, he probably wouldn’t need it for a while. When we went to his nephrologist a few weeks later, we expected to hear that things were stable and to just continue as we were. Instead, he told us that DH could start dialysis whenever he was ready. Talk about jaws dropping and our hearts going to out throats. We were both reeling! When the nurse realized how upset we were, she had the dr come back in. He told us that he had not meant DH HAD to start dialysis. DH had complained about being so tired so the dr was just offering to go ahead with the dialysis to remedy the exhaustion, if we so chose. We didn’t so choose to take that route, so the dr started looking for other alternatives. DH started doing iron infusions and they have made a huge difference. Meanwhile, my DH, like yours, takes advantage of any time I’m not watching to eat things he knows he shouldn’t. Like your hubby, mine is diabetic, hypertensive, and overweight. He lives on a very restrictive diet that I spend hours making from scratch and making as tasty as possible. It is SO DAMN frustrating when, instead of heating up something I’ve made in the fridge, he goes out and gets something he knows he shouldn’t eat. Is it really so hard to use the microwave? He used it for years, before his diagnosis. Please consider reaching out to the cardio to see if he can clarify and expand on how your husband is actually doing. Maybe he can help get your DH back on track. Take care, Marcy Thank you. Sounds all too familiar. DH has been exhausted and they mentioned last month that he seemed to be anemic (no doubt -- he keeps bleeding from his bladder cancer and infections), but hearing this new stage 3 chronic kidney disease was also a shock!! We needd much more direction and answers and we're not getting them at all.
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Deleted
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Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 15, 2019 15:35:41 GMT
What a shock! I can understand you must be reeling. There is a cardiologist at the Cleveland Clinic, Dr Esselstyn, who I bet would be happy to talk to you and your hubby and help you. The nicest guy you will ever meet. He saved my cousin’s life. But, and this is a huge but, my cousin was willing to do anything to save his life and made some drastic lifestyle changes. According to his first cardiologist and also his internist, the cancer and CHF should have killed him within 3 years. His drs have been so impressed by his outcome that both his cardiologist AND his oncologist have begun implementing the same lifestyle changes. You really need to want to do it though, it cant be forced on someone against their will. Wishing you strength and peace as you travel this part of your life’s journey. Thank you for that!!! My aunt is a top cardiologist in California and she keeps wanting us to come for a work up. I wish we could. What you explained is exactly what he needs. He's going from doctor to doctor, they're all not on the same page, and just traveling to see them all is basically all we've been doing. It would help to have better direction and to have them in one place. DH would want to do that,but we've both lost faith in our medical care here. He might just need a better Medicare plan. Not sure. Thank you.
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Deleted
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Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 15, 2019 15:57:51 GMT
I'm sorry you both had to hear that. I read it in a slightly different way. My interpretation was if your DH made lifestyle changes and lost weight, his life expectancy could improve. Do you think they could have been trying to shock him into helping himself? I realise that right now he's reacting by taking control in a destructive way, but maybe he needed to hear that to make constructive changes. Hugs to you both. Those were his cardiologists instructions on how to best take care of his heart issues. He just said that DH would feel less heart symptoms if he didn't have his huge belly pressing on his heart. Makes sense, but there are so many other medical issues at play. He has been acting in a destructive way and he claims that he needs quick food, etc., but I'm not always up and okay enough to cook and watch over him. It's frustrating. To everyone who posted on this thread, I thank you from the botom of my heart. Your words were encouraging, sweet and also Medically informative. DH wasn't supposed to live beyond age 35, back when he first got his CHF diagnosis, but he's still here at 73. He DOES need to take this seriously now if he wants to try to last as long as he could. I'll make an appointment for his psychiatrist asap, and then try to figure everything out. Hoping that Monday's Urology apointment isn't another blow. We've dealt with too much. Thank you again. I'll re-read this and get to my messages as soon as I can. Thanks!!
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Post by workingclassdog on Jun 15, 2019 16:32:46 GMT
So sorry.... Hang in there...
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Jili
Pearl Clutcher
SLPea
Posts: 4,366
Jun 26, 2014 1:26:48 GMT
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Post by Jili on Jun 15, 2019 19:32:25 GMT
I'm so sorry. I can't imagine how difficult that was to hear. I hope you can get some answers and move forward in a positive way no matter what.
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Nanner
Drama Llama
Posts: 5,987
Jun 25, 2014 23:13:23 GMT
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Post by Nanner on Jun 15, 2019 22:36:42 GMT
I'm so sorry. Wishing you both the beset.
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Post by pierkiss on Jun 16, 2019 1:54:14 GMT
I am so sorry. That is awful news.
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Post by peasapie on Jun 16, 2019 2:04:42 GMT
I feel for you. I am miserable just with my long-term migraines. You’re dealing with so much more, both yourself and your husband. I’m concerned about your health as you try to help with his.
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eastcoastpea
Prolific Pea
Posts: 9,252
Jun 27, 2014 13:05:28 GMT
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Post by eastcoastpea on Jun 16, 2019 2:04:46 GMT
Damn it, I was hoping for a good diagnosis. So sorry to hear the latest news. Big hugs heading your way.
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Deleted
Posts: 0
Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 17, 2019 17:36:27 GMT
I feel for you. I am miserable just with my long-term migraines. You’re dealing with so much more, both yourself and your husband. I’m concerned about your health as you try to help with his. Thank you! It might explain why I'm having many more migraine episodes (lasting up to 2 days/in bed)...... Stress? Worry?? Seasonal allergies here are awful. My sinuses are awful, and my surgical mess left me in its own pain. I'm dealing though. I keep reminding myself that it's not life-threatening with me yet, so it's okay.........
DH goes in a bit to his Urologist to see what plan of chemo is in store with this latest malignant batch of spots. Ugh. We're trying to enjoy our quiet/alone time. DD31 is up on LI with her dad and family for the week. Hoping to make the most of it here...... Thank you!
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Post by lesserknownpea on Jun 18, 2019 9:03:01 GMT
One day at a time. My dad was supposed to die 7 years ago. Instead he’s still ticking. Don’t focus on what DH is eating. Instead help him find reasons to be hopeful, and he will maybe decide better himself. I hope the migraines stop.
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Deleted
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Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 19, 2019 20:22:37 GMT
@bergdorfblonde thinking of you. How did everything go at the urologist?
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trollie
Pearl Clutcher
Posts: 3,580
Jul 2, 2014 22:14:02 GMT
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Post by trollie on Jun 19, 2019 21:58:48 GMT
I am sorry to hear about your DH.
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Gravity
Pearl Clutcher
Posts: 3,233
Jun 27, 2014 0:29:55 GMT
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Post by Gravity on Jun 19, 2019 22:22:13 GMT
Big hugs. I am sorry that you have so much on your plate right now.
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Deleted
Posts: 0
Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 19, 2019 23:07:14 GMT
@bergdorfblonde thinking of you. How did everything go at the urologist? Thanks for asking. We got the pathology report--no surprise there, but at this point his Urologist is suggesting radiation, and also highly suggesting that DH goes to a cancer center for further treatment. He said he's putting it in his notices to the primary doctor, and it's all he could do. He stuck his neck out and said, "She's the gatekeeper, and your insurance/HMO doesn't usually allow anyone outside of their own doctors, so if she denies it, drop your HMO and go with the regular red/white/blue Medicare, pick up a supplemental if you're able to afford it, and go to any doctors or cancer centers you want to. I HIGHLY suggest it at this time before it spreads." WOW..........
We're letting it all sink in. Working on getting his Cardiology records sent to my brother's best friend who headed the Mayo Clinic's cardiology dept (in MN). He needs help in all areas........
Thank so much again..... We're trying to take this week to just relax since we're alone (DD31 is away for the week), but it's been a bust so far!!! Hoping the rest of the week will be better! Hope all is well with you.
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smcast
Drama Llama
Posts: 5,466
Location: MN
Mar 18, 2016 14:06:38 GMT
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Post by smcast on Jun 19, 2019 23:36:29 GMT
So stressful. You guys are doing all you can. Hang in there.
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Deleted
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Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 20, 2019 0:17:31 GMT
He stuck his neck out and said, "She's the gatekeeper, and your insurance/HMO doesn't usually allow anyone outside of their own doctors, so if she denies it, drop your HMO and go with the regular red/white/blue Medicare, pick up a supplemental if you're able to afford it, and go to any doctors or cancer centers you want to. I HIGHLY suggest it at this time before it spreads." WOW..........
We're letting it all sink in. Working on getting his Cardiology records sent to my brother's best friend who headed the Mayo Clinic's cardiology dept (in MN). He needs help in all areas........ Wow, it does make you question whether she is giving you the best fighting chance or whether she's limited by your insurance. Definitely something to consider. Hope your brother's best friend can shed more light as to how to proceed from here.
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Post by stampnscrap1128 on Jun 20, 2019 0:42:40 GMT
Big hugs to you both! And an extra big hug to you. It's hard enough when you have your own medical problems but to have to be the primary caretaker for your spouse at the same time is a lot on your plate. He is so blessed to have you in his corner. Take care of yourself too! We are here for you!
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Deleted
Posts: 0
Sept 29, 2024 9:25:22 GMT
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Post by Deleted on Jun 20, 2019 16:29:20 GMT
Thank you all again for your support and kind words. I haven't been able to just turn it all off and relax. Stinks!!!! Been cleaning the house so i feel like I'm accomplishing something!!
DH remains tired and frustrated. He lost 8 lbs in only 5 days of eating healthy, but he's already frustrated. We'll figure out how to shut this all out and find a slice of peace, I Hope!!
Hope you all are well. Thanks again!!
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Post by anniefb on Jun 20, 2019 19:56:11 GMT
So sorry that you and DH are still going through so much. Sending hugs.
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teddyw
Drama Llama
Posts: 7,053
Jun 29, 2014 1:56:04 GMT
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Post by teddyw on Jun 20, 2019 20:19:58 GMT
It just seems like you never catch a break. Hopefully your brother’s friend reviewing his records will give you a good plan. Can you get to the Mayo Clinic in Jacksonville?
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