General What’s Your Ailment?

[Huntn]

@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.

Thanks for your perspective! Nothing has been said about infection, all reports so far that my kidney is functioning normally. I'm due to see the Kidney Doctor in Feb.

Chap 11- Feb2024
Kidney- It’s been a couple of weeks since the dreaded catheter was removed. I’m back to using the pool and gym. I can tell it’s been 3 months since I worked out. I had to spend some time remembering how I organized my lap swimming sets as it was not set in writing anywhere.

I’m due to get a CT Scan on Monday to check my kidney and see if it is stable or has reverted to leaking, fingers crossed.

I have occasion noticed some slight aches on my right side, but they are not the same as when I first got symptoms for the kidney issue back in October, discomfort in my lower back while sleeping. I have been working out, and those aches could have something to do with exercise.

Temporal Arteritis- I’ve been on a schedule weening myself off of Prednisone (steroid). I started at 60mg of Prednisone, and am now down to 9mg. Last month I started taking Actemra. The purpose of this medicine is to lower the body’s immune response. Remember Temporal Arteritis is an auto-immune disease, so it’s purpose is to keep the body’s immune response in check while lowering the amount of steroid’s I’m taking. My understanding is that helps you increase the rate at which you reduce steroid consumption. The end game is to get off medicine completely or to remain on steroids at a low amount of daily consumption, as if this was something that might go away and not come back. That remains to be seen.

One shocker is that last year I was with Anthem Medicare PPO and my first 1 month order of Actemra was $250 to me. This year we switched to Aetna Medicare Preferred PPO and the price was substantially higher. No, I did not check the cost of this medicine in advance of switching. It just did not occur to me.

The way it breaks down is that that the manufacturer’s approx cost is $9800 asking price for 4 single use self injection pins, taken once a week. CVS Specialty RX negotiated the price down to $4500, and agreed to pay $3300, leaving me with a $1200 copay.

My understanding this is because medicare pays up to $5k, then you hit the “donut hole” approx $2k. gap in coverage, before Medicare catastrophic coverage begins and at that point, if I understand it correctly, I have to pay 5% of the $4500, which is $225. I’ve told my wife, that if this is incorrect, and next month they want $1200, I’ll pass and revert to just weening myself off Prednisone at a slower rate (with doctor guidance). The entire reason this medicine exists is to speed up the process of getting off of steroids. I asked for financial assistance, and was advised there was none available. Stay tooned.

 

[Roller]

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.

Also sorry to hear @Huntn is going through this!

Unless you do renal imaging or are in a specialty that involves it (such as urology or nephrology), you wouldn't be in a position to encounter them. Sub-capsular urinomas are not common, but I've seen several. For the uninitiated, a urinoma is a collection of urine in a place other than the kidney's collecting system, ureter, or bladder. The capsule is a tough layer that surrounds the kidney. It's usually devoid of fluid, but urine may find its way there, either spontaneously or after an interventional or surgical procedure.

 

[Huntn]

Also sorry to hear @Huntn is going through this!

Unless you do renal imaging or are in a specialty that involves it (such as urology or nephrology), you wouldn't be in a position to encounter them. Sub-capsular urinomas are not common, but I've seen several. For the uninitiated, a urinoma is a collection of urine in a place other than the kidney's collecting system, ureter, or bladder. The capsule is a tough layer that surrounds the kidney. It's usually devoid of fluid, but urine may find its way there, either spontaneously or after an interventional or surgical procedure.

Do you work in medicine? What is unusual for me is the sub-capsular urinoma is usually caused by an injury, which I did not have, at least not knowingly, which makes me think it could be a blockage of some kind.

 

[fooferdoggie]

well there are no meds that I can take that don't effect my esophagus. BP meds are really bad. so I get to take to a pain management phycologist all free over Skype. I told her most likely I have ADHD so she got me to get tested for that and I did I have it and ow taking group classes over Skype. again free. also suggested getting the calm app to learn to deal with anxiety and stress and such. and thats usually about 15.00 a month but free for a year through my plan. Found ADHD needs to change from attention deficit to attention management. I have things thats come to the medication things I am using to calm my nerves and teach my body that the pain on my esophagus is not really a danger and help calm it down. one cool thing is my arms have been weak and tired for many years. my legs used to be till I started riding so much. well I finally figured out how to deal with them. no way I could just exercise on a regular basis. butI found I can read a book and wok my arms. I have those bungie cords at work work them standing up while raiding book on my phone then at home I work my wrists and hands whole sitting and reading.
I don't know how much I can change or if it's worth changing this late in life but some is. it's effected my future and my income audits too late to really change that.

 

[Huntn]

well there are no meds that I can take that don't effect my esophagus. BP meds are really bad. so I get to take to a pain management phycologist all free over Skype. I told her most likely I have ADHD so she got me to get tested for that and I did I have it and ow taking group classes over Skype. again free. also suggested getting the calm app to learn to deal with anxiety and stress and such. and thats usually about 15.00 a month but free for a year through my plan. Found ADHD needs to change from attention deficit to attention management. I have things thats come to the medication things I am using to calm my nerves and teach my body that the pain on my esophagus is not really a danger and help calm it down. one cool thing is my arms have been weak and tired for many years. my legs used to be till I started riding so much. well I finally figured out how to deal with them. no way I could just exercise on a regular basis. butI found I can read a book and wok my arms. I have those bungie cords at work work them standing up while raiding book on my phone then at home I work my wrists and hands whole sitting and reading.
I don't know how much I can change or if it's worth changing this late in life but some is. it's effected my future and my income audits too late to really change that.

Sorry you are dealing with this.

 

[rdrr]

@Huntn I cannot believe all that you have gone through and for so long. I really didn't realize until I read through your journals. I am so sorry you have gone through all of this. However, I am admiring your documentation and your holding them accountable attitude.

I wish I was a forceful with my own ailments. My Primary seems to be just as useless as yours was.

 

[fooferdoggie]

Sorry you are dealing with this.

I have had ADHD or whatever all my life and never got any help. at school they just put me in the dummy class cause they thought I could not read till I flew through all their books. at least now I am getting help for my problems.I did it early so my daughter will get my granddaughter tested so she can get the help she needs.

 

[AG_PhamD]

well there are no meds that I can take that don't effect my esophagus. BP meds are really bad. so I get to take to a pain management phycologist all free over Skype. I told her most likely I have ADHD so she got me to get tested for that and I did I have it and ow taking group classes over Skype. again free. also suggested getting the calm app to learn to deal with anxiety and stress and such. and thats usually about 15.00 a month but free for a year through my plan. Found ADHD needs to change from attention deficit to attention management. I have things thats come to the medication things I am using to calm my nerves and teach my body that the pain on my esophagus is not really a danger and help calm it down. one cool thing is my arms have been weak and tired for many years. my legs used to be till I started riding so much. well I finally figured out how to deal with them. no way I could just exercise on a regular basis. butI found I can read a book and wok my arms. I have those bungie cords at work work them standing up while raiding book on my phone then at home I work my wrists and hands whole sitting and reading.
I don't know how much I can change or if it's worth changing this late in life but some is. it's effected my future and my income audits too late to really change that.

I think I’ve mentioned this before, but clonidine is available in a transdermal patch- same concept as a nicotine patch. It’s not really conventionally used BP medication for general hypertension these days, but if your BP is super high it is an option. It’s an alpha-2 agonist which primarily reduces BP by relaxing blood vessels and to some extent reducing heart rate.

Clonidine as an alpha-2 agonist can also reduce gastric secretions (stomach acid production) which may be benefitical considering your situation.

Furthermore, Clonidine can be said to help dampen the sympathetic nervous system (“flight or fight response”), making it a useful medication in the treatment of anxiety. In my opinion, it’s one of the best rapid acting non-narcotic anti-anxiety medications available.

You might also be interested to know Clonidine is also used in the treatment of ADHD. It’s not well understood why helpful but I suspect it helps people relax, which can helps with clear thinking, being more attentive, less impulsive, etc. To be clear, it’s isn’t considered the most effective ADHD medication (often used in combination with others)

It has also been shown to be useful in reducing both neuropathic and somatic pain. It’s not going to be as effective as morphine, but may take the edge off.

The biggest downside of clonidine is that it can be mildly sedating, but people almost always adapt within a few days. Dry mouth is the most common chronic complaint. You also have to be sure to taper off if you discontinue after prolonged use as suddenly stopping it can cause you BP to spike.

I consider it a bit of a wonder drug just because of how versatile it is. It can also be useful for muscle spasms, ptsd symptoms, Tourette’s,
insomnia, restless leg syndrome, migrates etc. It’s extremely effective curbing withdrawal symptoms (ie alcohol, opioid withdrawal). It’s quite remarkable stuff but also quite safe and non-addictive.

As someone who primarily works in psychiatric medicine, I can say it’s never too late to be diagnosed or to get treatment for ADHD. It’s an extremely under diagnosed condition (but is also over diagnosed and mid diagnosed). There are many ways to address ADHD, medications are not the only solution, and stimulants are not the only medications that help.

As I am sure you have notice, mental health conditions become intertwined. For example, increased anxiety makes ADHD symptoms worse. Pain perception is inextricably linked to mental health. Therefore, it’s important to you get whatever help you need.

As someone who has dealt with chronic pain since age 15 (now in my mid 30’s) I get the struggle. I have nerve damage in my back. I’ve seen over a dozen doctors, a dozen other practitioners, tried probably 20+ medications from anti-inflammatory drugs to opioids without much benefit. My best advice- try not to focus on the pain. Easier said than done. The more you think about the pain, the more you notice it, the worse it feels- physically and emotionally. The worse you feel emotionally, the worse the pain, therefore the worse you feel emotionally. It’s a cruel and vicious cycle.

 

[fooferdoggie]

tanks for the info. I will keep the med it mind. but its not swallowing the meds thats the issue its in my blood stream. I dont think my esphagau hurts because of the meds but more that it reflects how my body is reacting to the meds. its like liquid fats like oil and juicy meats and such hurt my body and then the makes my esophagus hurt. so its not taking the meds thats the issue its having them in me.
but as far as pain I have been getting counseling from a pain management phycologist and she also got me diagnosed with ADHD. But dealing with pain is a matter of accepting it and even embracing it. lots of medication to be aware of it. she has taught me methods that are helping and they are some of the same or close methods as dealing with ADHD. I cant explain how she told me the body and pain. basics is your body is screaming fire (for me all my life with my esophagus) but the fire is not real. so you have to show your brain that the body is ok and not in emergency mode.
it used take a couple of weeks before a new med would get my esophagus hurting now it is a day or two. all my life meds have not worked well or done much for me. Morphine when I had a kidney stone just gave me a headache. the shot they give you before an operation when I was 13 did not even affect me. booze does not make me feel good pot does not really effect me.

 

[fooferdoggie]

a example of how my wacky body works is I took a mild laxative a couple days in a row. I think I had taken this once or twice before. it never bothered me. but Monday I took it afternoon and my esophagus was killing me around 4 am. I was pretty sure I ate enough but not sure. (my esophagus can really hurt at night if I dont eat enough) but I took it in the morning the next day and my esophagus woke me up around midnight with a really strange bad throbbing. I Knew I ate enough and I remembered the laxative. eating only helped a but my medications allowed me to get back to sleep. it seems almost any med will do this now its just getting worse.

 

[Huntn]

a example of how my wacky body works is I took a mild laxative a couple days in a row. I think I had taken this once or twice before. it never bothered me. but Monday I took it afternoon and my esophagus was killing me around 4 am. I was pretty sure I ate enough but not sure. (my esophagus can really hurt at night if I dont eat enough) but I took it in the morning the next day and my esophagus woke me up around midnight with a really strange bad throbbing. I Knew I ate enough and I remembered the laxative. eating only helped a but my medications allowed me to get back to sleep. it seems almost any med will do this now its just getting worse.

Sorry to hear this. What kind of laxative do you take? I take a generic equivalent of Metamucil twice a day.

 

[fooferdoggie]

Sorry to hear this. What kind of laxative do you take? I take a generic equivalent of Metamucil twice a day.

well looks like thats not what it was. as it happened last night and I did not take anything. I guess its part of whatever made me sick. but my medication sure helped and I could sleep. I use Whole Psyllium Husks like 4 to 6 tablespoons a day since often I have no fiber if I cant eat veggies every day. but for me I think its mostly gut bacteria. 40 years ago I got antibiotics way to often and it really nuked my gut bacteria for many years. so its been a ongoing battle to keep it ok. probiotics work for a bit then stop working. so I am always changing them. plus gut bacteria like carbs.

 

[AG_PhamD]

tanks for the info. I will keep the med it mind. but its not swallowing the meds thats the issue its in my blood stream. I dont think my esphagau hurts because of the meds but more that it reflects how my body is reacting to the meds. its like liquid fats like oil and juicy meats and such hurt my body and then the makes my esophagus hurt. so its not taking the meds thats the issue its having them in me.
but as far as pain I have been getting counseling from a pain management phycologist and she also got me diagnosed with ADHD. But dealing with pain is a matter of accepting it and even embracing it. lots of medication to be aware of it. she has taught me methods that are helping and they are some of the same or close methods as dealing with ADHD. I cant explain how she told me the body and pain. basics is your body is screaming fire (for me all my life with my esophagus) but the fire is not real. so you have to show your brain that the body is ok and not in emergency mode.
it used take a couple of weeks before a new med would get my esophagus hurting now it is a day or two. all my life meds have not worked well or done much for me. Morphine when I had a kidney stone just gave me a headache. the shot they give you before an operation when I was 13 did not even affect me. booze does not make me feel good pot does not really effect me.

That’s an awfully broad assumption to make. Different medications work in different ways.

Digestive system problems associated with oral medications that don’t have a pharmacological effect on the digestive system usually has to to do with irritation of the digestive act lining, That’s why constipation, upset stomach, diarrhea are always seen as side effects. Therefore, using an alternate rotate of administration (intravenous, transdermal, etc) can avoid this problem.

Another factor to consider is the psychosomatic. It’s possible given you’ve had this problem for some time, your mind can falsely associate causes and then you experience the side effect because you are expecting it. This is basically a manifestation of the nocebo effect, where a patient experiences a side effect associated with a medication despite actually receiving a placebo.

Don’t take this inquiry as offensive. It’s an entirely normal phenomenon. It doesn’t necessarily mean that it’s all in your head either, it’s possible your mind is inducing the physical effect (ie increasing stomach acid).

 

[fooferdoggie]

I think most of my esophagus pain is not directly from the meds. It started over 30 years ago with protonics I think then prednisone st it off a few years later. I went to 5 or so years ago without any prescriptions and only took Benadryl and Tylenol. When I tore my rotator cuff they had me take a ton of Tylenol and an anti-inflammatory. Between that and carbs it toasted my esophagus. The pain was so bad it made it a walking zombie for many months. I tried a few more tummy meds and one phyactric drug that was supposed to help my esophagus all made it hurt worse but it took a couple of weeks to do so. Pretty much gave up on getting help. Several months ago I tried two different BP meds. First one took a week ot cause severe pain and the next a day.
The whole time I was desperate for help and was very willing to try the meds.
But I don't think it is the meds hurting my esophagus its two they make my body feel. Anyone that bothers my body makes it hurt. Every time I get sick it hurts I get injured it hurts. If I eat liquid fat it hurts if I eat carbs it hurts. Anything my body does not like makes it hurt. I am very worried I wont be able to take any meds and meds never seem to do much for me so far. Plus my esophagus is hurting more andI think it's because my body seems ot be running out of energy. Two years ago I could ride my bikes 23o to 25o miles a week every week and not be very tired. Now I am lucky if I can do 150 miles a week and it really tires me. I coould do 40 to 50 miles on a weened day now I think I would nee lucky if I could manage 30 more but its more like 20 miles and I am tired afterwards.

 

[fooferdoggie]

I think a lot of it is that for now most of my life once the carbs became an issue and the food intolerance kicked in I have not been able to eat anything new on a daily basis. one thing unsweetened almond milk. other then that in 30 or more years I have not been able to add anything new. I have tried so many things and sometimes it seems fine for a month or so till I find I am tired and weak and I have to stop it. its as simple as changing brands of bacon or taking a electrolyte pill or a medication.

 

[Herdfan]

I think most of my esophagus pain is not directly from the meds.

Have you had a recent endoscopy to rule out Barrett's?

 

[fooferdoggie]

Have you had a recent endoscopy to rule out Barrett's?

yes and I had barretts but this last one I guess its gone now. my esophagus is not eroded either like I would think with what I thought was heartburn my entire life. stomach PH is normal too (god that was a horrible test)

 

[cbum]

Barrett's doesn't really go away, and since it's considered precancerous, it's worth keeping an eye on it.

 

[Huntn]

March 2024- Still weening myself off Prednisone, down to 6 mg per day, my impression of end game, get off prednisone completely, take Actemra for some period of time after (it lowers your immune system to prevent the return of an auto-immune disease) and just hope there is no relapse of the Temporal Arteritis or discover what level of medicine (steroids or Actemra) is required to keep it at bay.. This is what I’m getting from the doctor. Using the Actemra, I found a $6k grant to reduce my cost. Under Medicare with RX coverage, it appears that the medicine runs about a $100 a month, about $2000 during the Medicare donut hole (gap in coverage) and then back to $100 a month (4 injections per month).

So far no relapse with the Subcapsular Urinoma (Kidney leaking) as far as I know. In a couple months I’ll get another CT Scan which seems to be the way to identify the condition in advance of symptoms of abdominal pain.

Question regarding toenail fungus-. Anyone here ever get laser treatment for it? How many sessions and did it return? Over the decades, this is the third time I’ve had it. This last time, I took 2 rounds of oral medicine, 3 months each time, and it was no longer effective. I was going to see a podiatrist about laser treatment, but this other stuff popped up last fall, so I put it off.

 

[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.

I finally got a bill for last Nov, kidney issue as described in the post above. This was for one night in the hospital. A minor operation was conducted to put a drain in my kidney, they barely sedated me, and the procedure was about 15 minutes to poke a hole in my side. That part of the bill for the operation, including anesthesia was $10k. But it's deceptive on a couple of levels.

The Bill:
Hospital Charge: $39000
- Operation $8k (minimalist 15 min procedure)
- Anesthesia- $2.5k
- CT Scan- $9.5k
Total Insurance Adjust -$37740 (wiped away by insurance)
______________
Medicare Paid- $1360
I paid- $100.

• First off, Medicare! You've got to love it from a patient expense standpoint.There is no way that an average person could afford the initial bill listed above.
• 2nd- $39000 charge, even if it was not paid, for 1 night in the hospital? Ridiculous. Back when on regular company insurance before medicare, my wife spent 3 hrs in an Emergency room for heat exhaustion, where very little wa done and the bill was $5k that we had to pay.
• 3rd- How can the hospital operate getting reimbursed $1360 for what they did do?? Do they hate Medicare? But is the initial bill a huge tax scheme to show big losses??