General What’s Your Ailment?

[Huntn]

Chap 3:
I talked to my Doctor and it did not go well. I will be looking for a new Doctor.
Just curious questions:

• If you told you doctor you felt kill you had a stubbed toes feeling , followed by an episode of extreme pain in the forward part of your foot, but it had subsided, would you expect your family doctor to examine and possibly manipulate your foot?
• If you told your doctor you had experienced a week of unusual back pain radiating up through your mid back, would you expect your doctor to say “let’s have a look at your back?”

The worst was the sinus Infection, I gave the symptoms pain, pressure in sinuses, eyebrow, eye, teeth, but they had subsided the day I saw him, but no exam for inflation. The first thing the urgent care doctor did was listen to my symptoms and examine my throat which he obsevered as inflamed. Now I’ll never know if my regular doctor would have seen an inflamed throat, and because I said I was feeling almost normal, technically he has an out, thinking that sinus infections are mostly viral and not bacterial,, but he never said the words I think you have/had a sinus infection. Nothing was said in his notes.

All in all, maybe I’m too old fashioned, but I want a hands on doctor, who if I say some part of my body is or has been bothering me they will actually examine me, not just sit and type in my history. And not that I look forward to any doctor manipulating my genitals, this is the first doctor I have ever seen who has not checked for hernia during my annual physical. Is that on outdated standard too?

 

[Herdfan]

And not that I look forward to any doctor manipulating my genitals, this is the first doctor I have ever seen who has not checked for hernia during my annual physical. Is that on outdated standard too?

Didn't do mine either last time. And apparently they no longer do a urinalysis as part of a standard physical.

 

[fooferdoggie]

I have had esophagus pain all my life everyone that it was heartburn. It has been getting worse over the years. Carbs were the worst to get it going then acidic stuff then spicy stuff and then liquid fats.
It got horrible 5 years ago after months of antibiotics and anti inflamotrories for my finally diagnosed torn rotator cuff. It took a year to settle down but it had changed me. I could get away with a few diet pops a wee but interesting last few months it got far worse. Al the meds I have tried to take in the last 3 years have made it worse. I was trying blood pressure meds and they really made it bad. Usually it would a week or more to hurt the last one was hours and wiped me out for two days. All the meds that would help made it worse.
So I am stuck the pain in my esophagus causes my high blood pressure it causes my shoulders to take my arms to hurt sometimes one sometimes both. My upper back too it has made my arms so week over the years that it hurts to lift anything more then a few pounds. It started making my upper body have hot flashes allmost anything up there can ache. I have a cyst on top of my head not real big used to hurt off and on. When I got so bad lat month it got far bigger and hurt all the time. I made an appointment to finally get taken care of a mont plate it is really small. But two days of pain it started puffing up again. A blister on my gums does the same thing but it takes a week or more of pain to cause to to swell up.
I have learned to somewhat ignore the pain but now I just how bad it hurts by what else hurts. My arm is killing me? I check my my esophagus is hurting bad.
Trying to get into an acupuncturist not sure if my insurance will help or not. She also referred me to the pain management clinic since it's all nerve that are causing this and not damage to my esophagus. My diet has been so restricted because of my food intolerances but it's so much worse now. Nothing even hinting of sour no spice nothing strong flavored. All I can drink is water or unsweetened almond milk. No liquid fats like mayo or such no juicy meat either melted cheese is out too.

 

[Huntn]

Chap 3:
I talked to my Doctor and it did not go well. I will be looking for a new Doctor.
Just curious questions:

• If you told you doctor you felt kill you had a stubbed toes feeling , followed by an episode of extreme pain in the forward part of your foot, but it had subsided, would you expect your family doctor to examine and possibly manipulate your foot?
• If you told your doctor you had experienced a week of unusual back pain radiating up through your mid back, would you expect your doctor to say “let’s have a look at your back?”

The worst was the sinus Infection, I gave the symptoms pain, pressure in sinuses, eyebrow, eye, teeth, but they had subsided the day I saw him, but no exam for inflation. The first thing the urgent care doctor did was listen to my symptoms and examine my throat which he obsevered as inflamed. Now I’ll never know if my regular doctor would have seen an inflamed throat, and because I said I was feeling almost normal, technically he has an out, thinking that sinus infections are mostly viral and not bacterial,, but he never said the words I think you have/had a sinus infection. Nothing was said in his notes.

All in all, maybe I’m too old fashioned, but I want a hands on doctor, who if I say some part of my body is or has been bothering me they will actually examine me, not just sit and type in my history. And not that I look forward to any doctor manipulating my genitals, this is the first doctor I have ever seen who has not checked for hernia during my annual physical. Is that on outdated standard too?

Chapter 4
i was on a 5 day regimen of antibiocs and prednisone, which ended on Tuesday. On Wednday a significant headache developed primarily in my right sinus area and behind my right eye. Because I am on the outs with my doctor, who by the way, I have dropped and am establishing a relationship with a new clinic, I returned to Urgent Care, and the doctor there was concerned about the possibility of either a cluster headache or temporal arthritis. Apparantly this Urgent Care location could not handle taking blood sample to send off which will make me reevaluate “Urgent Care” as an option. But get this, the “Elite Emergency hospital“ I was sent to, also had to send their blood sample out to a lab! What -the-hell? I seem to remember when hospitals could do their own blood work. My clinic in Minnesota had their own blood work lab. With changes in medicine, I don’t know if they still do.

So he told me he wanted me screened for for temporal artritus, which was of emergency status because it is a serious condition which can cause blindness. My regular doctor could have done the blood test and sent it out. So because of circumstances, I’ll find our what the emergency room is going to cost me on Medicare.They were supposed to get the test results back that night, but they lost internet or so was the excuse and I’m still waiting to find out.

The doctor in the emergency room, prescribed a 10 day regimen of I assume “”big gun” antibiotics Amox/Clav along with a pain killer buta/apap/caf. Taking both, it took a day for my headache to recede, and I’m feeling fairly normal. Today I’ll bug the hospital again for the blood test results.

 

[fooferdoggie]

My body becomes more and more sensitive to sugar. For years I could have all I wanted one day a week with only some Yuck the next day. then it was making me super r tired and loopy. then my epshagaus went crazy and I had no carbs for a year. since then the amount I can have and not have a reaction has been dropping fast. It used to just make me loopy because my body would grab it and hoard it for an emergency. I used to be able to get a bunch of popcorn once a week at the movies then it starts getting me really bad. last time Ihad popcorn and butter I almost lost my finger in a power tool. before that it was a crash on the tandem. these were the last of any once a week carb spurge. I used to be able to just handle a York peppermint patty a whole 150 calories. but not now. Now I could not eat enough to get loopy now it just makes me feel like crap. Now I can't even handle 10 jelly belly jelly beans. I can handle some sugar in chocolate for some reason but if it is a more sweet thing nope. even one of the mini York peppermint patties is way too much. I felt like crap the whole day after the jelly belly experiment. last year I was Fine with that much. its like the more carbs I eat the more sensitive I become bt the less I eat the more sensitive too.
one way to get a bit sweet that so far still works is I suck on a couple f jaw breakers when I ride. not too big or they taste too sweet. or a mouthful of canned whipped cream very little sugar in that for the taste.

 

[Huntn]

Chap5
Do you remenber me telling you the screening for Temporal Arthritis was urgent? The blood sample was done on Wed, I was supposed to be notified that night, but the “internet went out”. Called Thur morning no results, Called Friday, no results. Called Sat, talked to a nurse, bitched at her about is this how “urgent tests” are handled by your hospital, you send it out and forget about it, until whenever it show up?? She said she’d call the lab and got them to finally fax over a copy. I picked up the report on Saturday.

Hospital CBC test (bloodwork)

• WBC - critically high
• PLT- high
• MPV - low
• GRA- high
• Creatine high

The test to screen for Temporal Arthritis- This test if the 2 readings were low would rule out TA, but if they were elevated would not confirm, but would not rule it out. More investigation needed.

• SED RATE- high
• REACTIVE Protein— high

So more investigation needed. Remember my original Dr told me there was no test to confirm a sinus infection or an infection? WRONG! My wife had told me that had diagnosed her in a previous time with sinus infection by virtue of checking white blood cell Count. So by virtue of me within the “critically high“ white blood cell count, indicating an infection, I’m happy I am on antibiotics.

So Saturday I called my “new” clinic which has a large network of clinics around Houston, and told them despite their available appointments being a month out, I needed to see a doctor on Monday. This is another possible clue about the popularity of my former doctor, it was usually very easy to get in to see him. The new clinic tells me they have a variety of not advertised “work in“ appointments, but they were not allowed to award them in advance, and I’d have to wait and call in on Monday morning, 8am sharp. Well my alarm is set… BTW I’m not feeling completely awful. I do feel off, my lower back has been aching, and I’ve been uncharacteristically been sleeping about 10 hrs .

 

[fooferdoggie]

if I need the same day its urgent care and who knows how long of a wait. though there might be a doc or nurse yo can talk too same day. not your doctor for sure.

 

[Huntn]

if I need the same day its urgent care and who knows how long of a wait. though there might be a doc or nurse yo can talk too same day. not your doctor for sure.

I’m currently working with Kelsey Seybold clinic, at least I’ve been able to get a “work-in” appointment for tomorrow. They have a large network of clinics in the Houston area. I asked the girl handling appointments, if you’re appointments run out 3-4 weeks, how do sick people see the doctor? She sympathized, but had no answer. There is another clinic close by sponsored by a Major Hospital (Memorial Herman) and I plan on stopping in there to see who they have on staff and how far out their appointments are booked…

I often sing the praises of my Minnesota Clinic, where I could call in the morning to see a doctor in the afternoon, but I’m out of touch. That clinic still exists in name but was purchased by a large medical corporate player So I can’t say they are as good as I remember them.

 

[Roller]

Chap5
Do you remenber me telling you the screening for Temporal Arthritis was urgent? The blood sample was done on Wed, I was supposed to be notified that night, but the “internet went out”. Called Thur morning no results, Called Friday, no results. Called Sat, talked to a nurse, bitched at her about is this how “urgent tests” are handled by your hospital, you send it out and forget about it, until whenever it show up?? She said she’d call the lab and got them to finally fax over a copy. I picked up the report on Saturday.

Hospital CBC test (bloodwork)

• WBC - critically high
• PLT- high
• MPV - low
• GRA- high
• Creatine high

The test to screen for Temporal Arthritis- This test if the 2 readings were low would rule out TA, but if they were elevated would not confirm, but would not rule it out. More investigation needed.

• SED RATE- high
• REACTIVE Protein— high

So more investigation needed. Remember my original Dr told me there was no test to confirm a sinus infection or an infection? WRONG! My wife had told me that had diagnosed her in a previous time with sinus infection by virtue of checking white blood cell Count. So by virtue of me within the “critically high“ white blood cell count, indicating an infection, I’m happy I am on antibiotics.

So Saturday I called my “new” clinic which has a large network of clinics around Houston, and told them despite their available appointments being a month out, I needed to see a doctor on Monday. This is another possible clue about the popularity of my former doctor, it was usually very easy to get in to see him. The new clinic tells me they have a variety of not advertised “work in“ appointments, but they were not allowed to award them in advance, and I’d have to wait and call in on Monday morning, 8am sharp. Well my alarm is set… BTW I’m not feeling completely awful. I do feel off, my lower back has been aching, and I’ve been uncharacteristically been sleeping about 10 hrs .

Temporal arteritis (arteritis = inflammation of the artery), better known as giant cell arteritis, is a bit of an odd diagnosis. But if a doctor thinks it needs to be rule out, it's important to do that quickly. Blood tests can suggest it, but not diagnose it. For that, a biopsy is required, though ultrasound can be used as well. Hope everything goes well for you!

 

[Huntn]

Temporal arteritis (arteritis = inflammation of the artery), better known as giant cell arteritis, is a bit of an odd diagnosis. But if a doctor thinks it needs to be rule out, it's important to do that quickly. Blood tests can suggest it, but not diagnose it. For that, a biopsy is required, though ultrasound can be used as well. Hope everything goes well for you!

You are right on. I spent another morning with laser headache boring my eyes, the skin of my head very sensitive, bordering on sore to touch. This is inline with inflamed blood veins to the head. Last night I took some of the big gun pain killer, no relief. Today, presented my notes and documentation to the new doctor and they are screening me for temporal arthritis.

Anyone dealing with temporal arteritis?
Not yet been diagnosed. But in the meantime, I’ve been given a 30 day RX of Prednazone, a steroid, which is a pick your poison situation, but it a choice of losing bone density vs losing your eye sight. Not a great, but a very easy choice. Any thought on supplements to reduce bone loss?

Giant cell arteritis - Symptoms and causes

www.mayoclinic.org

 

[Alli]

Any thought on supplements to reduce bone loss?

Calcium and D3. After that, you do like all us old women do and get 5 years of Boniva, followed by years of injection or infusion of something like Prolea (which my mother’s on), or Reclast (my drug of choice). Although it’s never our choice, is it. It’s a compromise between the physician and the insurance company.

 

[Huntn]

Calcium and D3. After that, you do like all us old women do and get 5 years of Boniva, followed by years of injection or infusion of something like Prolea (which my mother’s on), or Reclast (my drug of choice). Although it’s never our choice, is it. It’s a compromise between the physician and the insurance company.

Is Boniva over the counter?

 

[Huntn]

Chap 6
Yesterday saw the new doctor. Handed her a typed 3 page note, a timeline of events leading to my appointment with her, including copies of the bloodwork tests, including the screening for Temporal Artritus, which had been taken in the previous week, of which she read. She commented that it did not help with me bouncing around to different medical facilities and I explained that for me this is not the norm, and was a result of me switching doctors. She appeared ok with that.

It took some digesting on her part, but she focused on the concern about Temporal Artritus and the fact that Prednazone relieved symptoms of the headache, but that significant painkillers did not. She repeated the bloodwork screening for TA, arranged for a biopsy, and had me arrange to see my optimist to get an eye exam, dilated eyes.

I am not thrilled to be taking Prednazone for the next 30 days, but let me see, living with the top of my head on fire, living with a daily debilitaing headache focused on temple and eyes, with the likelyhood I’ll loose vision or go blind in time, or instant relief at the cost of losing bone density.

I’ve researched this a little and there is some medication on the market other than steroids that can be used to control TA. It bothers me that this is considered an autoimmune disorder. I’m looking at strategies to mitigate bone loss I need to get serious about dropping 30 pounds.

 

[Alli]

Is Boniva over the counter?

Of course not. Then again, nobody prescribes name brand, and it’s a once/month pill.

 

[Huntn]

Chap 6
Yesterday saw the new doctor. Handed her a typed 3 page note, a timeline of events leading to my appointment with her, including copies of the bloodwork tests, including the screening for Temporal Artritus, which had been taken in the previous week, of which she read. She commented that it did not help with me bouncing around to different medical facilities and I explained that for me this is not the norm, and was a result of me switching doctors. She appeared ok with that.

It took some digesting on her part, but she focused on the concern about Temporal Artritus and the fact that Prednazone relieved symptoms of the headache, but that significant painkillers did not. She repeated the bloodwork screening for TA, arranged for a biopsy, and had me arrange to see my optimist to get an eye exam, dilated eyes.

I am not thrilled to be taking Prednazone for the next 30 days, but let me see, living with the top of my head on fire, living with a daily debilitaing headache focused on temple and eyes, with the likelyhood I’ll loose vision or go blind in time, or instant relief at the cost of losing bone density.

I’ve researched this a little and there is some medication on the market other than steroids that can be used to control TA. It bothers me that this is considered an autoimmune disorder. I’m looking at strategies to mitigate bone loss I need to get serious about dropping 30 pounds.

Chap7
Oh boy, a setback. This happened last week, went to get my biopsy. I was advised that the clinic did not accept my insurance even though they had scanned my insurance card, accepted me, (someone made a mistake, not me) a doctor had seen me, and they had prescribed medicine to me, and sent me for a biopsy. Asked to see a manager was told none was available.

I did not realize at the time how time critical it was to get this biopsy in a timely manner and in hindsight, I believe the clinic is liable.

I may talk to a lawyer for advice, but I’m not planning any legal action because ultimately, my understanding is they put me on prednisone which is the primary method of dealing with Temple arthritis and that no harm was done other than the time critical aspect of getting a biopsy could be nullified because if you’re on steroids for too long, the inflammation, the biopsy is looking for may be suppressed, which will require another avenue of determining the best path forward.

After that, went to a new doctor, found Rheumatologist, watched him get angry about how long this had dragged out, and have arranged for a biopsy this week.

 

[Huntn]

Chap 8- A day trip to the emergency room. (Just a log, not fishing for sympathy. )

Yesterday, a little adventure for me. I have been dealing with a Temproral Arthritis diagnosis before that. seeing a Rhumalogist this week to discuss continued treatment… my impression is basically take steroids forever.

In addition for about 2 weeks, my back, right side has been bothering me when sleeping at night, a sensitivity centered on my right waist area, regardless of position, but minimized when sleeping on my stomach. I even changed to sleeping on the floor and a futon. I experienced several bouts of pain, centered on my right side and abdomain. I had an appointment set up with my primary doctor for this week to look at it, but after a significant onset of upon pain upon rising from bed. yesterday, I was worried about an appendicitis and was not going to wait until Tuesday, so drove to a local hospital emergency room.

They CT scanned my abdomen, and I was suprised by the result, a significantly enlarged right kidney with a large cyst in it. The Emergency Room physician tried to admit me into this hospital, but I was told, there was a kidney guy, but not a urologist available that day at the hospital, so they were going to send me to another hospital.

I told him, if that was the case I wanted to go to my primary hospital, (Houston Methodist) 20 miles away. He told me that was a diferent system, and that it would be a drawn out to “get approval“ and if he just put my name in for this Hospital System (HCA) that likely they would send me to a hospital 36 miles away. I told him no.

Plan B was because I was stable, low pain, not debilitated, he could discharge me, as long as I proceeded to my preferred hospital, which we did. This is where things get exciting.

I’m driving a Mini-Cooper which is a small car. On the way over to, I noticed tension building in my side-back, we pulled into a fast food place so my wife could grab a bite, she had not eaten that day, and I barely made it out of the drive through, into the parking lot, where I advised her, she would have to drive the rest of the way due to increased pain in my back.

As I stood up, I barely made it to the passenger side, when what I can only describe as an attack/event hit me with the worst pain I’ve ever experienced in my life. My right side was churning, pulsing with spikes of 10/10 pain, I did not puke, faint, but I may have screamed a little ending up on my hands and knees.

My wife was asking me, for her to drive me or call an ambulance. I said Ambulance, as I imagined something in my guts might explode and a fade to black. Fortunately that did not happen. I remembered that standing up after any discomfort associated with this condition, usually meant relief. So still on my knees. I straightened my torso and hung onto the roof the the car, which made no difference at first but eventually my raging kidney started to calm down.

The paramedics found me hanging on the side of the car, and assisted me to getting to me feet, got me into a stretcher, and by that time, my kidney had calmed down, as the event was over, gave some florinal which was appreciated, and they drove me to the hospital.

The previous hospital had given me a typed report and a CD copy of the CT Scan, which was handed over to the new Emergency Room physician, and now I was at my preferred hospital for the rest of the afternoon.

To wrap this up, of possible interest are the following:

• The initial read from the first ER doctor was this was the largest kidney he had ever seen 2x+large, it was full of cysts, with one particularly large cyst.
• He was not a urologist, but I asked if this condition was operable, and he seemed to think it would result in a likely kidney removal.
• However, at hospital No.2, I was advised that this condition was usually fully operable (after the ER physician consulted with a urologist), that the kidney could be drained, cysts could be removed and maintain kidney function, and it was normally handled as out patient!
• There could be cancer involved, but that remains to be discovered.

So I’m scheduled to see a urologist the beginning of this week to start resolving this issue. Later in the week, I’ll be seeing the Rhumalogist about the Temporal arthritis. I have not been significantly sick in my life,muntil I hit 70…
I’ve been preoccupied, typed this up here first for you, but will be throwing it into the What’s You’re Ailment thread.

A day trip to the Emergency Room yesterday, a little adventure for me. I have been dealing with a Temproral Arthritis diagnosis before that. seeing a Rhumalogist this week to discuss continued treatment… my impression is basically take steroids forever.

In addition for about 2 weeks, my back, right side has been bothering me when sleeping at night, a sensitivity centered on my right waist area, regardless of position, but minimizedcwhen sleeping on my stomach. I even changed to sleeping on the floor and a futon. I experienced several bouts of pain, centered on my right side and abdomain. I had an appointment set up with my primary doctor for this week to look at it, but after a significant onset of upon pain upon rising from bed. yesterday, I was worried about an appendicitis and was not going to wait until Tuesday, so went to a local hospital emergency room.

They CT scanned my abdomen, and I was suprised by the result, a significantly enlarged right kidney with a large cyst in it. The Emergency Room physician tried to admit me into this hospital, but I was told, there was a kidney guy, but not a urologist available that day at the hospital, so they were going to send me to another hospital.

I tood him, if that was the case I wanted to go to my primary hospital, (Houston Methodist) 20 miles away. He told me that was a diferent system, and that it would be a drawn out to “get approval“ and if he just put my name in for this Hospital System (HCA) that likely they would send me to a hospital 36 miles away. I told him no.

Plan B was because I was stable, low pain, not debilitated, he could discharge me, as long as I proceeded to my preferred hospital, which we did. This is where things get exciting.

I’m driving a Mini-Cooper which is a small car. On the way over to, I noticed tension building in my side-back, we pulled into a fast food place so my wife could grab a bite, she had not eaten that day, and I barely made it out of the drive through, into the parking lot, where I advised her, she would have to drive the rest of the way due to increased pain in my back.

As I stood up, I barely made it to the passenger side, when what I can only describe as an attack/event hit me with the worst pain I’ve ever experienced in my life. My right side was churning, pulsing with spikes of 10/10 pain, I did not puke, faint, but I may have screamed a little ending up on my hands and knees.

My wife was asking me, for her to drive me or call an ambulance. I said Ambulance, as I imagined something in my guts might explode and a fade to black. Fortunately that did not happen. I remembered that standing up after any discomfort associated with this condition, usually meant relief. So still on my knees. I straightened my torso and hung onto the roof the the car, which made no difference at first but eventually my raging kidney started to calm down.

The paramedics found me hanging on the side of the car, and assisted me to getting to me feet, got me into a stretcher, and by that time, my kidney had calmed down, as the event was over, gave some florinal which was appreciated, and they drove me to the hospital.

The previous hospital had given me a typed report and a CD copy of the CT Scan, which was handed over to the new Emergency Room physician, and now I was at my preferred hospital for the rest of the afternoon.

To wrap this up, of possible interest are the following:

• The initial read from the first ER doctor was this was the largest kidney he had ever seen 2x+large, it was full of cysts, with one particularly large cyst.
• He was not a urologist, but I asked if this condition was operable, and he seemed to think it would result in a likely kidney removal.
• However, at hospital No.2, I was advised that this condition was usually fully operable (after the ER physician consulted with a urologist), that the kidney could be drained, cysts could be removed and maintain kidney function, and it was normally handled as out patient!
• There could be cancer involved, but that remains to be discovered.
• I have not been significantly sick in my life, until I hit 70. I get an annual physical, kind of wondering why this was not caught sooner. It could be my worthless primary care physician who was hesitant to actualy examine his patients.
• I don’t see a urologist on a regulat basis, but maybe I should.

So I’m scheduled to see a urologist the beginning of this week to start resolving this issue. Later in the week, I’ll be seeing the Rhumalogist about the Temporal arthritis Diagnosis.

 

[Herdfan]

Sorry to hear.

I am not sure all these medical conglomerates are a good thing. Sure it's handy to have all your records in one place, but balls seemed to get dropped.

Best of luck to you!

 

[Huntn]

Chapter 9- Off To The Races.

As you may recall in the last Chapter, I dashed from one hospital to another (Sat 25 Nov) because the first hospital would not accept me (thank goodness) but there was a price to pay, wreathing in pain, howling at the sky, contemplating my soon to be altered existence.

For anyone who says “what the hell, why was an ambulance not taking you?“ The last time my wife rode an ambulence 5 miles to the hospital, it was attempted extortion by the County of $5k, later negotiated down to $2k and when I left the first hospital, there was no significant pain, after the doctor pressed all over my abdomen, and I was stable.

While in the new hospital, my new urologist, Dr. S had conferred with the Emergency Room Doctor, Dr.H and the plan was for me to see him see him on Monday, 27Nov, which I actually managed to do, having to hit the phone, first thing Monday morning, penetrating his office‘s antiquated phone system no one answering, leaving multiple messages. Having them call me back almost felt like a miracle!

The plan in his office was to send out an imaging order for a CT scan with enhanced contrast to the hospital, so the doctor could get a better picture of what was going on in my gut, before pulling out his scalpel. So that week of 27Nov, I went about my business, saw my New primary doctor on Tuesday (28th) and got her up to speed.

Saw my rheumatologist on Wednesday (29th) regarding my Temporal Arteritis*, the plan there is to ween me down off the high dose of Prednisone, to something more healthy without bringing my symptoms (severe headaches, and risk of damaged optic nerve) back.

*I had been calling it Athritis, which is incorrect.

About Wed (29Nov) , I had expected the Hospital to have called me, and while in the Urologist’s office that previous Monday, I had asked the front desk staff about the “imaging order”, one of the girls had it, but was complaining that something was missing, and I actually left there thinking, “ah, they will take care of it”.

So on Wed (29Nov), I called Dr. S’s office 4 times and ended up leaving 4 urgent messages. These messages were urgent, because although I had been given trusty hard core pain management”medicine on the previous Saturday, about Tuesday my abdominal pain had increased to a point where I had to start taking hydrocodone pill every 4 hours and where I could no longer sleep in bed due to pain, where my easy chair had sufficed to sleep in for several nights, it was no longer sufficient to stave off my abdominal side, back pain. In other words things were coming to a boil for a second time.

Then I get an “oops” message from Dr. S’s office the order had been delayed to the hospital. No, not possible?

I arrive at Thursday (30Nov) morning 4am with acute pain on my right side. Joe, my kidney is very unhappy, but not yet spasing out. That would be the pulsing, undulating, pushing nails out into my cut feeling that freezes me in my tracks. I wake my wife and ask her to take me to the hospital, a 20 mile drive. I recline the seat on the Toyota to about 50 degrees, gingerly climb in and fortunately Joe is semi-satisfied it is not being abused by me.

At the hospital, I get the CT with enhanced contrast, constantly in debilitating “give me a couple minutes” pain as any pressure put on my abdomen based on normal movements sets off Joe. The ER doctor consults with someone and they decide to put a drain (needle, tube, external 600 ml bag) into the “liquid filled” cyst.

I’m lightly sedated in an operating room, am told there will be a slight pinch as a needle is inserted into my side. Almost immediately the pain recedes as the bag starts to fill. Repeatedly emptied about 2.5 liters flows out, like formerly having an extra half gallon milk jug taking up space in my gut pressing up against my kidney.

I’m admitted to the hospital for observation. I have to say I had the best hospital food I’ve ever eaten. The next morning Dr.S. the urologist walks in my room with good news, I don’t have a giant damaged kidney with big cyst inside, but a giant liquid filled cyst that is semi surrounding the kidney and that now that the cyst is draining, relieving pressure on the kidney, the kidney is function is returning to normal! Great news, and they were going to release me from the hospital. The plan is to meet with the urologist, this morning 5Dec and decide on the next step.

Because they had been recording how much liquid was draining from the cyst at the hospital, no one asked me, but I continued to monitor this from home as I continued to empty the cyst bag that I keep in the pocket of my pants. It’s been draining at a variable rate of 22-100 ML per hour. The liquid was red, then over the weekend transistioned to pink, and now is a light tan color, but it still flowing. The doctor had mentioned something about it drying up, but so far it has not. I could easily imagine, the next step is to pluck that sucker out. Not so fast, more to come…

Chapter 10- December
Through out this ordeal, regarding my right kidney, there were some pronouncements made that turned out not to be accurate.

• “Enlarged kidney full of cysts”- emergency room doctor after viewing initial CT, when asked by me, the finishing touch, “it will probably have to be removed”.
• “A large liquid filled cyst attached to the kidney”- when first look at by my urologist.

This was later corrected to be a “subcapsular uranoma”.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7930576/

“Subcapsular urinoma is defined as the collection of urine between the parenchyma and capsule of the kidney.”

https://my.clevelandclinic.org/health/diseases/24094-urinoma

The Urinary Tract & How It Works - NIDDK

Describes how the urinary tract works, why it’s important, what affects the amount of urine produced, and how to keep the urinary tract healthy.

www.niddk.nih.gov

Any knowledgeable medical professionals, feel feee to correct me, but in essence a urinoma forms when urine stops flowing from the kidney to the bladder as it should, completely, in total, and instead leaks out into the subcapsular membrane that surrounds the kidney. This can be caused by a blockage, in the kidney or the ureter that is the tube from the kidney to the bladder.

My case is unusual because often this condition is associated with an injury which as far as I know did not occur. However it has been noted on my right kidney a bend, possibly a kink in the ureter, that might have restricted urine flow enough to cause this condition.

The doctor’s plan was to encourage the urine to start flowing back to the bladder as it should. So plan A was to insert a stint from the bladder, though the ureter, into the kidney. This was an out patient procedure, the stent would provide a definitive path for urine flow from the kidney to the bladder. However in early Dec when this was performed, about 20% of my total urine output continued to drain into the kidney bag, fluid coming from the kidney membrane area.

The doctor explained that the bladder can actually provide back pressure to the kidney, and to further encourage drainage, plan A-2 would be to insert a catheter into, yes I’ll say it, my penis and into the bladder. This procedure, conducted by Nurse Ratchet (kidding) was very painful, as no numbing agent and no warning was given, as compared to a cystoscopy when they examine your bladder with flexible, rod, camera, and use a numbing agent before any hardware is inserted. In this case, I exclaimed “OUCH!!!” and could imagine I heard a chuckle in response.

So over the Christmas holidays I suffered with a tube hanging out of my privates, strapped to a bag on my leg, and varying degrees of discomfort from, burning to occasional razor blades, to being pierced by nails. I even managed to attend a family Christmas gathering where most people knew my condition, thanks to my wife, but were nice enough not to ask me about it. Besides me walking with a limp, it was not obvious that I had 2 tubes coming out of my body. It was easy to stuff the kidney bag into my pants pocket and it not be noticeable.

This catheter achieved what the doctor wanted, my kidney bag stopped filling urine. After 2 weeks, on Friday (Jan5) I went in and had the dreaded catheter removed. It came out easier than it went in. Over the weekend, the kidney bag remained dry. On Monday (Jan8), I had a Cystocope to remove the stint and the bag remains dry. And this coming Friday, I’m scheduled to have the kidney bag removed.

What next? There is more to be done, I’m just not sure at this point. I can’t say, I am cured at this point, but things are looking up. I believe my kidneys will be studied for functionality via CT scan, urine, and blood work. They don’t know why this condition formed, it’s possible, that any blockage was removed, but no blockage was cited. I believe this bend/kink in my ureter will be further examined as something suspect.

So I’ll close this chapter with, don’t forget about my Temporal Arteritis. I’m still working with my rheumatologist, I’ve reduced my prednisone intake from 60mg to 20mg per day, and now they have started me on a scary medication called Actemra, (read the possible side effects) a once a week injectable whose purpose reduces your body’s immune response, to increase the rate at which I can get off the prednisone, or stabilize at a low rate of steroid exposure, and my understanding is to get off the Actemra too.

 

[cbum]

Glad you seem to be on the mend.
First thing that came to my mind about your kidney is a pretty rare condition called Nephroptosis, where a kidney moves downward when you stand. That could lead to some kinking of the Ureter (the thing connecting your kidney with you bladder).
You are not the typical case (thin white women) so take this with appropriate skepticism.
Anyway, best of luck. TA is not fun.

 

[AG_PhamD]

Chapter 9- Off To The Races.

As you may recall in the last Chapter, I dashed from one hospital to another (Sat 25 Nov) because the first hospital would not accept me (thank goodness) but there was a price to pay, wreathing in pain, howling at the sky, contemplating my soon to be altered existence.

For anyone who says “what the hell, why was an ambulance not taking you?“ The last time my wife rode an ambulence 5 miles to the hospital, it was attempted extortion by the County of $5k, later negotiated down to $2k and when I left the first hospital, there was no significant pain, after the doctor pressed all over my abdomen, and I was stable.

While in the new hospital, my new urologist, Dr. S had conferred with the Emergency Room Doctor, Dr.H and the plan was for me to see him see him on Monday, 27Nov, which I actually managed to do, having to hit the phone, first thing Monday morning, penetrating his office‘s antiquated phone system no one answering, leaving multiple messages. Having them call me back almost felt like a miracle!

The plan in his office was to send out an imaging order for a CT scan with enhanced contrast to the hospital, so the doctor could get a better picture of what was going on in my gut, before pulling out his scalpel. So that week of 27Nov, I went about my business, saw my New primary doctor on Tuesday (28th) and got her up to speed.

Saw my rheumatologist on Wednesday (29th) regarding my Temporal Arteritis*, the plan there is to ween me down off the high dose of Prednisone, to something more healthy without bringing my symptoms (severe headaches, and risk of damaged optic nerve) back.

*I had been calling it Athritis, which is incorrect.

About Wed (29Nov) , I had expected the Hospital to have called me, and while in the Urologist’s office that previous Monday, I had asked the front desk staff about the “imaging order”, one of the girls had it, but was complaining that something was missing, and I actually left there thinking, “ah, they will take care of it”.

So on Wed (29Nov), I called Dr. S’s office 4 times and ended up leaving 4 urgent messages. These messages were urgent, because although I had been given trusty hard core pain management”medicine on the previous Saturday, about Tuesday my abdominal pain had increased to a point where I had to start taking hydrocodone pill every 4 hours and where I could no longer sleep in bed due to pain, where my easy chair had sufficed to sleep in for several nights, it was no longer sufficient to stave off my abdominal side, back pain. In other words things were coming to a boil for a second time.

Then I get an “oops” message from Dr. S’s office the order had been delayed to the hospital. No, not possible?

I arrive at Thursday (30Nov) morning 4am with acute pain on my right side. Joe, my kidney is very unhappy, but not yet spasing out. That would be the pulsing, undulating, pushing nails out into my cut feeling that freezes me in my tracks. I wake my wife and ask her to take me to the hospital, a 20 mile drive. I recline the seat on the Toyota to about 50 degrees, gingerly climb in and fortunately Joe is semi-satisfied it is not being abused by me.

At the hospital, I get the CT with enhanced contrast, constantly in debilitating “give me a couple minutes” pain as any pressure put on my abdomen based on normal movements sets off Joe. The ER doctor consults with someone and they decide to put a drain (needle, tube, external 600 ml bag) into the “liquid filled” cyst.

I’m lightly sedated in an operating room, am told there will be a slight pinch as a needle is inserted into my side. Almost immediately the pain recedes as the bag starts to fill. Repeatedly emptied about 2.5 liters flows out, like formerly having an extra half gallon milk jug taking up space in my gut pressing up against my kidney.

I’m admitted to the hospital for observation. I have to say I had the best hospital food I’ve ever eaten. The next morning Dr.S. the urologist walks in my room with good news, I don’t have a giant damaged kidney with big cyst inside, but a giant liquid filled cyst that is semi surrounding the kidney and that now that the cyst is draining, relieving pressure on the kidney, the kidney is function is returning to normal! Great news, and they were going to release me from the hospital. The plan is to meet with the urologist, this morning 5Dec and decide on the next step.

Because they had been recording how much liquid was draining from the cyst at the hospital, no one asked me, but I continued to monitor this from home as I continued to empty the cyst bag that I keep in the pocket of my pants. It’s been draining at a variable rate of 22-100 ML per hour. The liquid was red, then over the weekend transistioned to pink, and now is a light tan color, but it still flowing. The doctor had mentioned something about it drying up, but so far it has not. I could easily imagine, the next step is to pluck that sucker out. Not so fast, more to come…

Chapter 10- December
Through out this ordeal, regarding my right kidney, there were some pronouncements made that turned out not to be accurate.

• “Enlarged kidney full of cysts”- emergency room doctor after viewing initial CT, when asked by me, the finishing touch, “it will probably have to be removed”.
• “A large liquid filled cyst attached to the kidney”- when first look at by my urologist.

This was later corrected to be a “subcapsular uranoma”.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7930576/

“Subcapsular urinoma is defined as the collection of urine between the parenchyma and capsule of the kidney.”

https://my.clevelandclinic.org/health/diseases/24094-urinoma

The Urinary Tract & How It Works - NIDDK

Describes how the urinary tract works, why it’s important, what affects the amount of urine produced, and how to keep the urinary tract healthy.

www.niddk.nih.gov

Any knowledgeable medical professionals, feel feee to correct me, but in essence a urinoma forms when urine stops flowing from the kidney to the bladder as it should, completely, in total, and instead leaks out into the subcapsular membrane that surrounds the kidney. This can be caused by a blockage, in the kidney or the ureter that is the tube from the kidney to the bladder.

My case is unusual because often this condition is associated with an injury which as far as I know did not occur. However it has been noted on my right kidney a bend, possibly a kink in the ureter, that might have restricted urine flow enough to cause this condition.

The doctor’s plan was to encourage the urine to start flowing back to the bladder as it should. So plan A was to insert a stint from the bladder, though the ureter, into the kidney. This was an out patient procedure, the stent would provide a definitive path for urine flow from the kidney to the bladder. However in early Dec when this was performed, about 20% of my total urine output continued to drain into the kidney bag, fluid coming from the kidney membrane area.

The doctor explained that the bladder can actually provide back pressure to the kidney, and to further encourage drainage, plan A-2 would be to insert a catheter into, yes I’ll say it, my penis and into the bladder. This procedure, conducted by Nurse Ratchet (kidding) was very painful, as no numbing agent and no warning was given, as compared to a cystoscopy when they examine your bladder with flexible, rod, camera, and use a numbing agent before any hardware is inserted. In this case, I exclaimed “OUCH!!!” and could imagine I heard a chuckle in response.

So over the Christmas holidays I suffered with a tube hanging out of my privates, strapped to a bag on my leg, and varying degrees of discomfort from, burning to occasional razor blades, to being pierced by nails. I even managed to attend a family Christmas gathering where most people knew my condition, thanks to my wife, but were nice enough not to ask me about it. Besides me walking with a limp, it was not obvious that I had 2 tubes coming out of my body. It was easy to stuff the kidney bag into my pants pocket and it not be noticeable.

This catheter achieved what the doctor wanted, my kidney bag stopped filling urine. After 2 weeks, on Friday (Jan5) I went in and had the dreaded catheter removed. It came out easier than it went in. Over the weekend, the kidney bag remained dry. On Monday (Jan8), I had a Cystocope to remove the stint and the bag remains dry. And this coming Friday, I’m scheduled to have the kidney bag removed.

What next? There is more to be done, I’m just not sure at this point. I can’t say, I am cured at this point, but things are looking up. I believe my kidneys will be studied for functionality via CT scan, urine, and blood work. They don’t know why this condition formed, it’s possible, that any blockage was removed, but no blockage was cited. I believe this bend/kink in my ureter will be further examined as something suspect.

So I’ll close this chapter with, don’t forget about my Temporal Arteritis. I’m still working with my rheumatologist, I’ve reduced my prednisone intake from 60mg to 20mg per day, and now they have started me on a scary medication called Actemra, (read the possible side effects) a once a week injectable whose purpose reduces your body’s immune response, to increase the rate at which I can get off the prednisone, or stabilize at a low rate of steroid exposure, and my understanding is to get off the Actemra too.

@Huntn, so sorry you’ve had to go through that. Sounds absolutely terrible but it sounds like you’re on the mend. Don’t you love the inefficiencies and problems of the healthcare system presenting themselves when you need healthcare the most- all things considered it seems like you didn’t have to deal with too much of such nonsense.

I don’t recall ever seeing a case of a subcapsular uranoma- that’s quite rare. It’s also extremely dangerous- leaking urine into places it should not be risks infection. Polynephritis- infection of the kidney obviously risks serious damage to the organ and could progress to sepsis. In cases of septic shock you have a 1/3 risk of death. Perhaps less obvious uranomas also risk electrolyte imbalances which can cause further kidney damage, blood pH issues, and most notably nervous system dysfunction that can present as seizures, coma, respiratory distress, arrhythmias, cardiac arrest.

Understandably that was not a pleasant experience but it could have been far worse. Glad things are improving.

As for the temporal arteritis, that’s another not so common condition. Interestingly someone I know just got diagnosed with Granulomatosis with polyangiitis aka Wegener’s- it’s an autoimmune disease affecting blood vessels- similar in some regard to TA. He told me the pain was the worst he has ever felt- coming from someone who once had a compound fracture of his femur.

Anyways, TA is also a serious condition that can have disastrous implications. I’m glad you sought out treatment for that too.

Prednisone is a wonder drug but at the same time something to avoid taking longterm if possible. Actemra does have a lot of potential side effects but in my experience it generally well tolerated. Keep in mind all potential side effects from the clinical trials are listed regardless of whether not they are proven to be associated. The infection risks mentioned in the “black box warning” exists with any immunosuppressant- including prednisone. Prednisone doesn’t have the specific BBW but likely only because it’s so old and it’s common knowledge for practitioners. It should be said however Actrema has come under increasingly scrutiny due to new risks being discovered and these risks not being well communicated to patients.

But there is often a lot of in my opinion unjustified myopic focus drug’s long list of potential side effects and dangers when you consider the serious conditions such drugs are treating. High risk diseases warrant drugs with a narrower safety profile in the absence of the existence of better options- it’s all relative.

Unfortunately there’s not a lot of options for TA. Off the top of my head the only other alternative to Prednisone and Actemra is methotrexate.. which is literally a chemotherapy agent use to treat cancer that also works well as an immunosuppressant (for reasons not well understood despite being used for 70+ years and being used extensively). But Take a look methotrexate’s side effects, contraindications, and etc. I’d say Actemra is the better option.

That said, methotrexate costs pennies. Actemra is what? $1200-1500 per injection? It’s also a speciality drug so I imagine you’re paying co-insurance rather than a copay? That’s usually 20-40% these days. Happy New year! hope your pharmacy benefits are part of your deductible!

I’m sending you a PM to mention a couple things offline.