Back Down South+Lightening Damage Back Home

[Deleted]

Life has been really stressful in the last week or so.

The hill near my house took a hit from lightening and it fried my internet router, flipped all the GFCI outlets off in my house, and fried the surface controls for my well pump. (And, the thunder it produced and the lightning bolt were epic to experience...)

We didn't realize the well had a problem because I have a large holding tank. The day I arrived back down south to deal with DS's issues, my plumbing sucked in all the silt from the empty holding tank and clogged up a lot of the plumbing parts. (Finally just got it fixed. One day of DS1's labor and $500 to a well driller...)

DS2 still has the kidney stone. In the middle of an attack, while speaking to me on the phone, he had a seizure and passed out. All I heard on the phone was him hit the ground and then couldn't contact him. I had to have the neighbor come over, get him off the floor, and call an ambulance.

We did manage to score him an appt tomorrow with a nurse practitioner in the urology clinic. They claim the urologist only works a few days a year here and won't be here until the end of October... A shortage of urologists in CA or some such.

He had a massive seizure last night and he said after over an hour of convulsions and all over paralysis, he was able to crawl out to where I was sleeping and wake me up.

At this point, his job is tired of him working for an hour or two, having a seizure, then having to go home. He's frustrated with still having the stone and all the seizures.

The neuro at UCSF suggested his primary care doc try an antidepressant and/or antianxiety drug to see if they can calm the seizures. He wrote a letter.

Saw the new primary care doc the other day and all he would say is DS needs to see a telepsychatrist for medication.

DS had 3 seizures in the doctor's office and he still refused to take him off work or approve him for disability, something I don't understand at all.

He said if he wants to apply for disability or take time off of work, then he has to talk to the shrink about it. The next appt is "in a few weeks"... Knowing how the healthcare system works, that person will probably just refer him back to his primary care doctor.

At this point, we are dealing with the stone. Once that's been removed or broken up and is no longer an issue, then we will see if he is able to get the appt with the shrink and if the seizure activity lessens. If not, we've made the decision he will move home with me.  

DS's ex-GF's mother is a primary care doc in my area and knows him well. She agreed previously to see DS. We will talk to her about putting him on disability until the local tele-psych folks up north can get his medication prescribed and working.

DS is really sad about the prospect of moving back up north. It may need to happen though. Once my other son and his GF move out permanently, then I can't just get in the car and come here because I have dogs and no one to watch them. And, we all agree that right now it's just not safe for him to be here alone. 

I'm really hoping they deal with the stone tomorrow... He's had it for 4 months, has had 5 ambulance rides and 8 trips to ER. He's had 5 CT scans, all showing the stone in the same exact place.

I told the hospital administrator on Friday he's probably given them $100K in bills and all they have done is give him prescriptions for opiates and told him to call the urologist they all know is never here! And, they wonder how people get addicted... Solve the damn problem and stop using him as income. So frustrating.

[gs11rmb]

I'm really sorry your son is still having these problems.  I can't begin to imagine your frustration and worry.

[gacpa]

I told the hospital administrator on Friday he's probably given them $100K in bills and all they have done is give him prescriptions for opiates and told him to call the urologist they all know is never here! And, they wonder how people get addicted... Solve the damn problem and stop using him as income. So frustrating.

Yes, it is incredibly frustrating.  Your sentence above nailed the problem.  They care more about making money than solving the problem.  He should have had some relief a long time ago.  This is totally unacceptable.

I have seen a couple of TV shows that showcase people who have had to become their own "medical detectives" to get the help they need.  One is on Netflix, called "Diagnosis" and one is on TNT called "Chasing the Cure".  They hunt down diagnoses so people can get help. 

Let us know if he is able to get help. 

[Deleted]

DS saw the urologist today.

The doc was kinda an ass, but he did agree to do the surgery this week to remove the stone.

Progress! 

[finnime]

That's great news, @rockhounder. One big step forward.

[bean29]

Glad to hear your son has relief in sight. Hopefully your problems at home will all work out too.

[cottontail]

rockhounder, I am so sorry to read about your son's continued problems.

Have you considered contacting a lawyer who specializes in disability law? I wonder if one might be able to help your son work through the process including the medical system. You may be able to find one who would only take payment if the disability claim was successful.

[Deleted]

DS had surgery on Wed to remove the stone. The urologist said the stone was larger than it appeared on the CT scans and would never have passed on its own due to the damage it was causing in the ureter. 

They put in a stent that's been giving DS issues, so today they pulled it out. Hurts just thinking about that.

So, hopefully he's on the mend now. 

The doc at UCSF wrote us an RX for the psych med he needs since no one else seems to want to do it. He also wrote a letter for DS's job explaining they need to stop sending him home after seizures because this type has no recovery period needed.

And, he said he will happily sign the paperwork for DS to go out on disability if the seizures don't stop and the medical docs won't agree.

The UCSF doc also said he wants to talk to the new telepsych person DS has to see. And, if the seizures don't stop now that the stone is out then he needs to be retested for epilepsy. 

We finally feel like some positive progress is being made. He's very sore and has been miserable, but he's excited the stone is gone and the seizures so far seem like they went with it.    The doc at UCSF he said he would be very surprised if DS's seizures don't stop with the removal of the stone. 

The current medical mystery is DS's face keeps becoming paralyzed on both sides. Bell's Palsy doesn't typically cause paralysis on both sides, so it could be an indicator something else is actually wrong with DS. For that, only time will tell.

I'm still stuck down south with him and all the lost income is a problem for DS, but we are figuring it out and I can work down here, so that's helping. Finally, progress!

[finnime]

Progress is very good!

[weltschmerz]

Aug 23, 2019 16:40:07 GMT -5 @rockhounder said:

DS had surgery on Wed to remove the stone. The urologist said the stone was larger than it appeared on the CT scans and would never have passed on its own due to the damage it was causing in the ureter. 

They put in a stent that's been giving DS issues, so today they pulled it out. Hurts just thinking about that.

So, hopefully he's on the mend now. 

The doc at UCSF wrote us an RX for the psych med he needs since no one else seems to want to do it. He also wrote a letter for DS's job explaining they need to stop sending him home after seizures because this type has no recovery period needed.

And, he said he will happily sign the paperwork for DS to go out on disability if the seizures don't stop and the medical docs won't agree.

The UCSF doc also said he wants to talk to the new telepsych person DS has to see. And, if the seizures don't stop now that the stone is out then he needs to be retested for epilepsy. 

We finally feel like some positive progress is being made. He's very sore and has been miserable, but he's excited the stone is gone and the seizures so far seem like they went with it.    The doc at UCSF he said he would be very surprised if DS's seizures don't stop with the removal of the stone. 

The current medical mystery is DS's face keeps becoming paralyzed on both sides. Bell's Palsy doesn't typically cause paralysis on both sides, so it could be an indicator something else is actually wrong with DS. For that, only time will tell.

I'm still stuck down south with him and all the lost income is a problem for DS, but we are figuring it out and I can work down here, so that's helping. Finally, progress!

Is this the doc who's an ass?

[weltschmerz]

Take it from a nurse....we don't care if the doc is an ass, or has a terrible bedside manner. All that really matters is if he knows his stuff, and is exceptional at what he does. That's the kind of doctor you want.

[jerseygirl]

Good that he is getting help, both for now and longer term

[Deleted]

Aug 23, 2019 16:49:45 GMT -5 weltschmerz said:

Aug 23, 2019 16:40:07 GMT -5 @rockhounder said:

Is this the doc who's an ass?

No. The doc at UCSF has always been great.

The urologist was a complete and utter asshole. 

DS also saw a new GP last weekend. He was Asian and I am fairly certain didn't speak English. He read DS's letter from UCSF about the RX to prescribe him and kept saying he needed a psychiatrist not a medical doctor - at his appt to establish with a medical doctor! DS won't be seeing him again...

[Deleted]

Aug 23, 2019 16:51:39 GMT -5 weltschmerz said:

Take it from a nurse....we don't care if the doc is an ass, or has a terrible bedside manner. All that really matters is if he knows his stuff, and is exceptional at what he does. That's the kind of doctor you want.

DS had a stone mechanically removed and a stent put in. He's been urinating blood for days and had a string hanging out his junk.

The urologist came unglued at me when I asked about pain medication post-procedure. He doesn't prescribe pain meds. He suggested DS go see his regular doctor if he needed them. WTF? I kinda hope some day he has his urethra augered out and the doc refuses to treat his pain. Perhaps he might change his attitude.

[weltschmerz]

Well, I hope things will be working out for you. You have both suffered long enough.