Surviving
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Thanks everyone, it looks like we're getting closer to a diagnosis.......maybe.
It looks like the most likely culprit in hubby's illness is some sort of kidney problem. We know from his CT scan that his tubes from kidneys to bladder (ureter) are dilated, we know he has a kidney stone but don't know if it's blocking anything, his blood work came back with decreased kidney function, he's gained 14 lbs of water weight (not fat) in seven weeks, 7 of those in the last 9 days, he's having trouble breathing and sleeping, has a funny taste in his mouth, lack of energy, swelling in his ankles (this is new), increasingly higher blood pressure etc. All symptoms of kidney disease. His lungs are more or less okay, mild scarring and perhaps mild COPD but his oxygen levels and pulmonary function test are all normal, so everything is leaning towards kidneys right now.
We have an appointment with a urologist on the 21st of June and will go see his primary doctor next week to see what she thinks. If anything changes for the worse...............we go to the ER right away.1 -
So sorry you're both going through this: Beaming strength & positive thoughts in your direction! I hope there will be some avenues for improvement, with the diagnostic progress.1
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Sorry I have been non existent the last few days. Hope you are getting some answers!2
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Thanks guys, it was kind of a long weekend. He feels pretty good in the morning but as the day wears on......not so much. We keep thinking about going to the ER but can't quite pull the lever on that yet. It's such a grueling experience and exhausting.
We're calling his primary care doc at 8 am tomorrow to get a same day appt and see what she thinks of the results we have so far and then we'll go from there.
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Okay..........last post regarding hubby for awhile. We have appointments with 4 different specialists between June 21 and July 8 so we probably won't know anything definitive for awhile. His doc today prescribed a diuretic to help get rid of some of the extra fluid...........poor guy's gained about 18 lbs in 8 weeks and it's not from over eating.
Anyway, thanks for all the support here, I really do appreciate it. Looks like we're looking at something kidney or heart related, or both, but none of his results so far are too dire. Obviously we're hoping for a good prognosis once all tests and appointments are complete.
I've been a little off my game plan but hoping to hang tough still with my workouts and helping him around here with his normal work/home related activities.2 -
You are doing well handling lots of incoming info. It helps to feel things are "not too dire."
And yes, you are a star for keeping to your workouts.1 -
Where you at?
http://www.biosciencetechnology.com/article/2014/10/reversing-idiopathic-pulmonary-fibrosis
That's just a link I found. I know of another company with a product on the market to reverse liver fibrosis that should work well on pulmonary tissue as well. Get your doctor educated.
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Thanks Jerome, it's not looking right now like IPF is the culprit but we could get to Cedars Sinai if there's a change in the diagnosis. We have fabulous insurance and can go wherever we want as long as they take Medicare. We had crappy insurance for years and paid through the nose for it ($1700/mo for the two of us) and so we feel lucky now that we can place our health first and receive good care.
He has appt's with his cardiologist, a urologist and a nephrologist this month then back to the pulmonologist in early July. We should know what we're dealing with by then. I do have him taking a supplement called MSM that's supposed to be helpful for lung tissue.1 -
Okay..........last post regarding hubby for awhile. We have appointments with 4 different specialists between June 21 and July 8 so we probably won't know anything definitive for awhile. His doc today prescribed a diuretic to help get rid of some of the extra fluid...........poor guy's gained about 18 lbs in 8 weeks and it's not from over eating.
Anyway, thanks for all the support here, I really do appreciate it. Looks like we're looking at something kidney or heart related, or both, but none of his results so far are too dire. Obviously we're hoping for a good prognosis once all tests and appointments are complete.
I've been a little off my game plan but hoping to hang tough still with my workouts and helping him around here with his normal work/home related activities.
@luluinca, you're doing exactly the right thing keeping up with your workouts and other self-care. Caring for a spouse with a serious condition, chronic or longer-term acute, is one of those "put on your own oxygen mask before assisting others" scenarios. Your strength and health become even more vital elements.
Sending wishes to you both for positive turns in the situation!2 -
I have been absent for a while. I am so sorry that your husband is dealing with such serious health issues. I hope that the doctors can sort it all out and create a plan that brings relief and improved health.1
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Okay, we finally found the right doc to help my husband. It's definitely a kidney problem and he's on a catheter for about 3 or 4 weeks right now to settle things down. It could be prostate but it also looks like his bladder may not be functioning, so we need some more tests once they stabilize things.
Anyway, he was so relieved when we left the doctor's office this afternoon that I felt like crying. So weird to think that having a catheter would make you feel relieved...........hmmmm, there's a joke in there somewhere, and since he's something of a comedian anyway, the jokes have already begun.
We still have more tests and an appointment with a nephrologist to go through, plus the catheter adventure to figure all this out, but we've gone from pulmonary fibrosis to malfunctioning kidneys in a fairly short amount of time......Wish us luck!4 -
It sounds like you're finally moving in the right direction. I'm so glad!!0
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Really happy you are getting somewhere. Once they figure out the problem, you can move on to treatment.1
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Good to hear that you are making progress in the diagnoses maze. Best of all, he is joking.1
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Oh wow .... bring us good news!!!1
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Okay so I have bit of an update.........I really appreciate that any of you are even interested.....:)
It's definitely a bladder, prostate, problem. He's lost almost 28 lbs of water weight since the water pill and primarily because of the catheter, in two weeks. We couldn't believe how much water weight he was carrying.......!!!
He's breathing normally again, sleeping better and also able to walk further without feeling like he can't breathe.
We had no idea this was happening.
His heart doc seems to agree that it's a kidney blockage problem........
He's seeing 5 different docs right now but I think the urologist has all the answers.5 -
Getting rid of the water weight is bound to help his breathing and sleeping, not to mention the walking...
Glad to hear he's feeling better!1 -
This definitely sounds like progress, at least - hoping for both your sakes that it's just the beginning of much progress in positive directions!0
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Thanks you guys.0
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Here's what we know so far, he's been diagnosed with Stage 3 Kidney Failure but some of that could reverse a little when they figure out if it's his prostate or bladder or both. If it's prostate they can do something about it, if it's bladder they can't.
Since he's been on the catheter and lost all the extra fluid that was basically drowning him his symptoms are much better. He's breathing without the inhalers and eating better. His energy has improved somewhat as well. Some of the swelling has gone down in his kidneys so that was good news too.
Next week he goes in for the bladder function test and at the end of August the prostate. He'll be on the catheter until they figure out what they can do for him. He's okay with that for now so I'm hoping he'll be able to get off of it once all is said and done but I suppose there are worse things in life.
If they need to operate on his prostate it won't happen until after our daughter's wedding in CO at the end of September so he's not crazy about all the waiting but we have little choice in that I guess.2 -
It sounds like they're narrowing in on the issue.
I'm glad to hear his quality of life has improved. It's pretty hard to fight off illness while drowning.1 -
Wow, what an experience, and not a good one, but good for you for continuing to pursue and get answers. Hoping for a good outcome from the upcoming tests.
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Thanks guys...........we keep moving forward and getting answers.
So strange that originally everyone though his lungs were shot when in reality it was a little further south.
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Did the positive energy arrive? I sent it priority prayer... (((hug)))1
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Awwwww, thanks Mac. Unfortunately we don't know anything still on the kidney/bladder/prostate situation. Today's test is actually in conjunction with another test on Aug 31 (we didn't know that) so we won't get any results until after that. He felt like maybe he didn't do very well but I told him he doesn't really know what they're looking for so let's not worry about it until we know something for sure.
We also saw his cardiologist this morning after the echo cardiogram and his heart health has declined. Not happy about that but he has zero symptoms so as long as he feels ok for now we're trying not to make ourselves sick worrying. We're seeing another heart specialist about having an internal defibrillator put in so another appointment and maybe more tests again.......uggghhhh.
Staying tough and strong here though and he feels so much better since he's gotten rid of all the excess fluids that we're counting our blessings where we find them.
Thanks for the Priority Prayers...........I'm sure they're helping.1 -
Very stressful situation, you are amazingly strong. I am happy to see you take some time for yourself (gym/swimming). We are with you in spirit.2
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yes we are !2
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Thanks guys........we'll be fine. That's what we do......LOL.......survive!1
