Prayer and pixie dust requests--Updated May 2

No, sadly. I went into the ER a week or so ago with a BP of 189/99. Lots of symptoms - but no one seems to be digging in to figure out what's going on (the ER says it's not immediately life-threatening, follow up with primary care/specialists - primary care/specialists say they can't get a handle on it and go to ER).
Hope you get some answers, @bsmcneil.

CORRECTION: I misinterpreted the assistant's conversation. It has, in fact, breached the prostate wall. However, it has not spread to any other areas of the body.
Well a bummer and a :thumbsup2, Kim. Hope upcoming appointment goes well.
 
Hope you get some answers, @bsmcneil.

Well a bummer and a :thumbsup2, Kim. Hope upcoming appointment goes well.
Thank you. Still nothing, really. I feel so stymied in trying to get the attention of any medical providers - for instance, if I've gone in - I'll mention a number of symptoms, including edema. I've had very bad edema. Providers will look at my ankle and say, "Well, you're fine now." I offer to show them pictures because when it happens, it's significant. There's no interest. And I think so much of that is based on seeing me as a 40 year old and likely fine. At the same time, I have now lost all leg hair around my ankles (in 3 months). Dry, scaly skin that all seems to point to peripheral artery issues (especially given all of the other symptoms) - but people just seem to gloss right over these things. Tonight I noticed I seem to be developing cyanosis in my thumbnail beds.

Yesterday (the 12th) marks the 6 month mark of when this stuff started. I've been coughing up significant amounts of blood/having blood in my sputum daily since September. I'm sleeping like 12 hours, awake between 2-4 hours, and then another 12 hours of sleep (by exhaustion - sleeping on the couch with lights on, etc because my body has just given out). And the frustrating thing is that after 6 months of this stuff, people lose interest/compassion - whether it's friends or work and I'm just trying to keep going but I think people think I'm largely making it up since there's no diagnosis, etc.

Sorry, just had to write that out. It's been a rough 48 hours (lots of arm/shoulder pain on Sunday though I resisted going to the ER since I'm normally just sent home - I think that it is/was likely severe dehydration but I had a fever, cramping, light-headedness, even vomiting). Of course, I'm wondering why I'd be so severely dehydrated - nothing has changed in terms of fluids, exposure to sun, etc ... but it's that sort of "second level" wondering that gets stopped every time I seek care.
 


Surgery yesterday, Kim? Hope all went well. :hug:'s

@bsmcneil, any updates for you? Improvements? Medical folks listening to your concerns? :hug:'s
Thanks for asking! I see a rheumatologist here in a couple of hours. Last dr visit was the same as usual. Was asked what I thought should happen and I'm like, "I'm not the pulmonologist - you are!" I have an MRI next week. Some symptoms changing again. Like a friend (who is a nurse) said, it seems doubtful that I'll get a diagnosis. I just really wish I felt better, etc. I have another thread up - life is exceedingly hard right now (and the fatigue that has me sleeping 18 hours a day isn't helpful). Thanks for asking!
 
Thanks for asking! I see a rheumatologist here in a couple of hours. Last dr visit was the same as usual. Was asked what I thought should happen and I'm like, "I'm not the pulmonologist - you are!" I have an MRI next week. Some symptoms changing again. Like a friend (who is a nurse) said, it seems doubtful that I'll get a diagnosis. I just really wish I felt better, etc. I have another thread up - life is exceedingly hard right now (and the fatigue that has me sleeping 18 hours a day isn't helpful). Thanks for asking!
Good morning, @bsmcneil. I do hope something definitive comes from your appointment today and MRI next week. Stay with it until you get some answers. God bless.
 


Good morning, @bsmcneil. I do hope something definitive comes from your appointment today and MRI next week. Stay with it until you get some answers. God bless.
Thanks. Funny enough - today's the day that felt like it broke me. I don't think, really, that I can keep trudging through. I'll do the MRI and be done, I think.
 
Thanks. Funny enough - today's the day that felt like it broke me. I don't think, really, that I can keep trudging through. I'll do the MRI and be done, I think.
Hang in there, @bsmcneil. Be persistent until you are satisfied. Get that MRI and let's see where we go from there. Deal?
 
Surgery yesterday, Kim? Hope all went well. :hug:'s
....yes, thank goodness.....the doctor said they did everything they were going to do...got all cancer out....he came home Thursday afternoon and it's been a slow go....hopefully catheter will come out on Thursday when he goes for his post-op check-up....<<fingers crossed>>

Thanks everyone for all your prayers!
 
....yes, thank goodness.....the doctor said they did everything they were going to do...got all cancer out....he came home Thursday afternoon and it's been a slow go....hopefully catheter will come out on Thursday when he goes for his post-op check-up....<<fingers crossed>>

Thanks everyone for all your prayers!
What a great update, Kim! Good news. God bless. Keep the good news coming.
 
Me three! I am so grateful to have just found this kind thread. Healthy prayers for all with a :grouphug:

I would appreciate extra prayers that God-willing dad and I are able to enjoy a special Disneyland Trip over my birthday in May, We both are currently recovering from long-term feet issues that have been a challenge indeed. I pray we have grown in faith and indeed closer together. We are blessed that is for sure. Today just marks exactly 2 months from when we would go which is why this extra on my mind. Thank you, friends and sweet dreams. P.S. Reminder if any of you would enjoy some encouraging snail mail PM me. It would be a blessing to send you a postcard :)
 
What a great update, Kim! Good news. God bless. Keep the good news coming.
I want to piggyback on what Dan says.
....they did remove the catheter and he is starting to feel more like himself every day. The doctor's assistant also told us that 39 lymph nodes were removed and they bopsied around the entire area which all came back negative. He will have to go every 6 months for periodic check-ups to check his PSA level.
 
Kimmar:hug:🙏to you and your husband. I am grateful extra to God that your DH is doing much better. Please take care of yourselved and know we care.
 
....they did remove the catheter and he is starting to feel more like himself every day. The doctor's assistant also told us that 39 lymph nodes were removed and they bopsied around the entire area which all came back negative. He will have to go every 6 months for periodic check-ups to check his PSA level.
Sure sounds like a successful procedure and good report, Kim. Good news again.
 

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