Apple Watch, With Some Maneuvering, Can Deliver 12-Lead ECG

From today’s news.  I have actually done this when I was feeling unusual after water aerobics.

 

A “quasi-standard” multilead ECG can be recorded using just the Apple Watch, a report showed.

The ECG function on the Watch is designed to monitor electrical activity of the heart in the direction of lead I only, ignoring the superoinferior axis captured by the standard leads (II and III) and the horizontal plane captured by the precordial leads (V1 to V6).

Yet certain workarounds can give the Apple Watch the “quasi-standard” 12-lead information of a proper ECG recording, according to Miguel Ángel Cobos Gil, MD, PhD, of Hospital Clínico San Carlos in Madrid, Spain, reporting online in the Annals of Internal Medicine.

Users can generate lead II by touching the digital crown with a finger on the right hand and lead III by touching with the left hand after moving the smartwatch to the ankle or somewhere on the leg, he said.

And although it’s not possible to generate the conventional precordial leads (V1 to V6), bipolar chest leads (CR1 to CR6) may be sufficient: those can be obtained by placing the back of the watch on the chest and touching the digital crown with a right-hand finger, according to the author.

Cobos Gil showed the similarity in ECG recordings between a standard 12-lead device and the Apple Watch in three test subjects: a healthy person (the author himself), someone with ST-segment-elevation MI, and another with non-ST-segment-elevation MI.

“Standard limb leads (I, II, and III) obtained using both methods are identical, and the precordial leads (V1 to V6 vs. CR1 to CR6) bear a strong resemblance,” he reported.

“Considering the sales figures of Apple devices, the watches likely outnumber conventional ECG machines worldwide. The availability of a method to record an ECG with diagnostic potential anytime and anywhere could potentially revolutionize our approach to cardiac emergencies,” the author suggested.

This report presents a “new twist” on how the Apple Watch can be used and shows that getting the 12-lead information from this device is “definitely something that can be done,” commented Jeffrey Goldberger, MD, of the University of Miami.

But when and why it would be done are unclear, he told MedPage Today in an interview.

Perhaps it could be useful in an urgent scenario where a 12-lead ECG machine is not available, somewhere where medical resources are very limited and there are no hospitals or doctor’s offices around that can do the standard test, he suggested.

Yet the Apple Watch ECG recording would need to be transmitted somewhere to someone who can give advice over the phone — and that would require Internet access. “If it’s a remote area, where do you call for medical care and attention?” Goldberger said.

The smartwatch ECG could be a niche strategy in theory and is certainly not going to replace the conventional machines, he said.

“You need a fair amount of cooperation from the patient to do the various maneuvers to make the various recordings,” he added. “It’s probably more time-consuming to do than just a standard 12-lead where you make the recording and you’re done. Here you do everything in sequence.”

More clinical studies are needed to determine the role of smartwatch ECG recordings, Cobos Gil acknowledged.

Another consumer-oriented device, the AliveCor KardiaMobile 6L, provides 6-lead ECG recordings when paired with a smartphone app.

From https://www.medpagetoday.com/cardiology/arrhythmias/83583?xid=nl_mpt_SRCardiology_2019-11-30&eun=g1406328d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=CardioUpdate_112919&utm_term=NL_Spec_Cardiology_Update_Active

Bee’s Knees – Bad Knews

And here, I’ve been worried about a Cushing’s recurrence instead of knee pain relief.

 

Joint Injections: Are They Worth the Risk?

Adverse outcomes hastening joint replacement have raised concerns

  • by Nancy Walsh, Senior Staff Writer, MedPage Today

Intra-articular injections of corticosteroids for relief of the pain of hip or knee osteoarthritis (OA) may have adverse long-term consequences, researchers suggested.

These injections are commonly performed and have been “conditionally” recommended by the American College of Rheumatology and “should be considered,” according to the Osteoarthritis Research Society International. The American Academy of Orthopedic Surgeons, however, has advised clinicians to be on the lookout for emerging evidence for or against the use of intra-articular injections in the knee, explained Ali Guermazi, MD, PhD, of Boston University School of Medicine, and colleagues.

However, a review of the outcomes following 459 injection procedures performed during 2018 in a single center now has identified four potential adverse events that should raise concerns, particularly for certain patients:

  • Accelerated OA progression, reported in 6% of patients
  • Subchondral insufficiency fractures, seen in 0.9%
  • Complications of osteonecrosis, in 0.7%
  • Rapid joint destruction including bone loss, also in 0.7% of patients

These findings were published in Radiology.

The Background

Cochrane meta-analysis evaluated 27 trials that included more than 1,767 patients found moderate improvements in pain and slight benefits for physical function following intra-articular corticosteroid injections for knee OA. However, the review noted that the quality of evidence was low, concluding that the results were inconclusive.

“Whether there are clinically important benefits of intra-articular corticosteroids after 1 to 6 weeks remains unclear in view of the overall quality of the evidence, considerable heterogeneity between trials, and evidence of small-study effects,” the Cochrane reviewers wrote.

In an editorial accompanying the Boston University report, Richard Kijowski, MD, of the University of Wisconsin in Madison, wrote, “The use of intra-articular corticosteroid injection to treat OA remains commonplace in clinical practice despite the lack of strong evidence supporting its efficacy.”

In vitro and animal research has revealed that corticosteroids actually can have negative effects on cartilage. “The action by which corticosteroids are chondrotoxic is complex, but it seems to affect cartilage proteins (especially aggrecan, type II collagen, and proteoglycan) by mediating protein production and breakdown,” Guermazi and colleagues explained.

Moreover, the local anesthetics often combined with the steroids also have been linked with chondrolysis.

And a recent retrospective study of 70 patients with hip OA found that 44% of patients who were given injections of triamcinolone with ropivacaine had radiographic progression and 17% experienced collapse of the articular surface.

“Thus, there is a growing body of evidence to suggest that intra-articular corticosteroid injection can accelerate the progression of joint degeneration,” Kijowski observed.

The Events

The injection protocol used at Boston University involved 40 mg triamcinolone, 2 mL of 1% lidocaine, and 2 mL of 0.25% bupivacaine.

Accelerated OA progression, characterized by rapid loss of radiographic joint space, was first observed in trials of nerve growth inhibitors, wherein some patients required joint replacement earlier than had been expected. Some experts have suggested that a loss of joint space exceeding 2 mm within a year can be considered accelerated progression, which can be accompanied by effusions, synovitis, and local soft tissue changes.

This accelerated OA progression was seen in 26 patients, following hip injections in 21 patients and knee injections in five.

Subchondral insufficiency fractures were the second type of adverse outcome observed, and were seen in four patients undergoing intra-articular hip injections. This event was previously thought to occur in elderly patients with osteopenia, but has now been reported in younger, active patients who present with acute pain but no apparent trauma.

The affected area often is weight-bearing and may involve loss of cartilage and meniscal tearing. Radiographic findings can be normal or subtle, while on magnetic resonance imaging (MRI) subchondral hypointensity may be detected. If the condition is identified early, before articular collapse has occurred, healing can occur, but once the articular surface has collapsed, the joint must be replaced.

Early identification of subchondral insufficiency fractures also is crucial before intra-articular injections, because the steroid may interfere with resolution of the fracture. Moreover, if an injection is performed and results in pain alleviation, the patient may increase weight-bearing and worsen the insufficiency fracture, hastening collapse.

The third type of event the researchers identified involved complications of osteonecrosis, which typically present with insidious onset of pain or can be asymptomatic. MRI is required for the diagnosis, and can help predict collapse by the extent of osteonecrosis and bone marrow edema. Once collapse has occurred, the only option is joint replacement.

The fourth adverse outcome, rapid joint destruction including bone loss (also referred to as rapidly progressive OA type 2), occurred in two patients with hip injections and one following a knee injection. Some previous authors likened this event to accelerated osteonecrosis, and others have hypothesized that the joint destruction results from undiagnosed subchondral insufficiency fractures.

The Advice

There are currently no recommendations regarding imaging before performing an intra-articular corticosteroid injection, and in some cases, findings may be subtle. “However, given the relative ease of performance and the low cost of radiography, there should be a low threshold to obtain radiographs before performing an intra-articular corticosteroid injection, as the intervention may affect the disease course (i.e., it may result in accelerated progression),” Guermazi and colleagues wrote.

Of particular concern are patients who have no apparent OA or very mild changes on radiographs who have been referred for injections because of pain. In these cases, the indication for injection should be “closely scrutinized,” as destructive or rapidly progressive joint space loss tends to develop in patients with severe pain but minimal structural change on radiographs.

“Clinicians should consider obtaining a repeat radiograph before each subsequent intra-articular injection to evaluate for progressive narrowing of the joint space and any interval changes in the articular surface that can indicate subchondral insufficiency fracture or type 1 or 2 rapidly progressive OA,” the authors advised.

“We believe that certain patient characteristics, including but not limited to acute change in pain not explained by using radiography and no or only mild OA at radiography, should lead to careful reconsideration of a planned intra-articular corticosteroid injection,” the authors concluded, adding that MRI may be helpful in these circumstances.

“Patients might be more than willing to take the small risk of an adverse joint event requiring eventual joint replacement for the possibility of at least some degree of pain relief after intra-articular corticosteroid injection,” wrote Kijowski.

“However, patients have the right to make this decision for themselves,” he stated.

From https://www.medpagetoday.com/rheumatology/arthritis/82753

Bee’s Knees 6

This is a continuation of an ongoing knee issue.  It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.

What’s happened since the “quick kneecap recap” below:

In mid-August, 2019 my knee started getting really uncomfortable again.  The brace I’d bought for latex and neoprene allergies on March 27 was too hard to put on because I had to bend my knee to pull it up.  so I bought a wraparound one from the same company.

This one, which I hope is the last, is a mouthful of a name  “BIOSKIN Wrap Around Compression Supportive Knee Brace for Patellofemoral Pain and Patella Tracking Disorders – Q Brace“. That being said, it’s way easier to put on but I really don’t like wearing it all the time.

September 2. I was sitting on the sofa and went to straighten out my leg to put on a footstool.  Major owee.  On went the brace and three Tylenol.  I may be saving my one kidney by not taking other pain meds but I’m not sure what is going to happen to my liver  😊

September 4.  Hooray!  The next injection with yet another doctor.  This one, I know, though.  She’s my mother’s doctor and the reason I go to this practice in the first place.  When my mom was in the nursing home last year, this is the doctor they sent. She saved my mother’s life.  I had been complaining about my mom bleeding internally and the nursing home basically said “someone will check”.  I got Dr. Vo in there and my mom immediately left for the hospital where they took care of the bleeding.  Who knows, if I’d let her stay in the rehab/nursing.

I have no idea how she’ll do with knee injections, though

Actually, she did wonderfully well.  We started with the traditional PA, Jack,  who asked the traditional questions, did the weighing, blood pressure, temperature.  He asked if I could have a medical student come in and I said oh yes.  I’d definitely used to helping out with med students thanks to my many weeks at NIH.

David, the student, came in and asked similar traditional questions.  Then, Dr. Vo did the same.

Then, all 3 of them were there along with DH and my knee.  A little cramped but it worked.  She did a really good workup, Apparently, my patella isn’t moving as well as it should.  As always, they say my left knee is swollen but I can’t see that.  According to my pain when she pressed various places, she thinks I have a small tear (Patellar tendon rupture)  She was the first person to ever mention this possibility.  Years ago, another doctor thought it was a possible “lateral collateral ligament vs meniscus tear”.

Injury to the patellar tendon generally requires a significant force such as falling directly on the knee or jumping from a height. (I had most definitely fallen on my knee in 2013) – from https://maryomedical.com/2013/02/18/icy-days-and-mondays/

Ice

January 28, 2013, I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.

I had fallen on black ice and had been wearing flannel-lined jeans. Still got banged up a bit!

Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.  Luckily, I hadn’t let go of the dog’s leash.

I ended up sitting in a puddle of icy water for a long time, figuring out how to get up.  I finally sort of crawled up the trash can that was sitting in the driveway.

The dog had an abbreviated walk, I changed my wet, cold clothes and headed to the hospital.  I was showing DH my knee and one of the staff bandaged it up for me.  I told him I hadn’t fallen at the hospital and wouldn’t sue but I guess he wanted to be sure.

(February 18, 2013, my knee still had a huge lump under the skin and hurts when I touch it, although I’m no longer limping,  The bruise/pain from cellphone finally went away)

~~

Back to 2019: Risk factors for Patellar tendon rupture include patellar tendinitis, kidney failure (DUH!), diabetes, and steroid or fluoroquinolone use (DUH, again – taking daily steroids, Growth Hormone and 2 previous Kanalog 40 shots). There are two main types of ruptures partial and complete. In most cases, the patellar tendon tears at the point where it attaches to the knee cap.

After all that, she showed the PA and med student how to find a good “line” for the needle to go into.  The injection includes lidocaine so it doesn’t hurt so much going in and kills pain fairly quickly in the knee.

She made a little circle with a marker (the others did this, too),  the PA really went to town with the spay antiseptic, including my sandaled feel.  She did quite well with the injection.  Tom said she hit the circle exactly.  There was a bit of discomfort when she hit/nudged something in there but it was fast.

As the first injection, this was on the lateral, outside, part of my kneecap.  The second was on the inner part.  I mentioned this to everyone, commenting that the second (medial) didn’t seem to work as well as the first.  I’d told the second doctor my pain was more on the inner side, so maybe she was going by that.  It’s my theory that the needle went right by the pain but what do I know?

More spray and a bandage.  They told me to move my knee around a lot before I could leave.  This was a first.  I used my time to go to the ladies room.  LOL

She gave me some exercises to do at home, some similar to what I do in Water Aerobics (Hooray!) which I have done for several years.  Both she and past doctors have said that’s one of the best things I can do for this.  However, I have to stay out of the water for a few days to be sure nothing gets into the injection site.

Dr. Vo also prescribed a tube of Voltaren 1 % topical gel to use as needed on our upcoming cruise.  This cruise is one reason I wanted to get the injection now.

She’s recommending 3 times a year group for this injection – the last doctor said 3 to 4 times a year.  I don’t want to get into the steroid-induced Cushing’s group so I’m trying for 3 (or less) times.  Starting September 4, 2019, if I get 3 shots a year the next Could be January, May,  September.

  • So far, the last 2 were September 12, 2018 (If it were not for the cruise, I could have held out a bit longer to make it more than a year since shot 1!)
  • Shot #2 was April 22, 2019.
  • Current #3 was September 5, 2019

The following list includes any diagnoses that were discussed at your visit.

1. Osteoarthritis
• arthritis: care instructions
• osteoarthritis: care instructions
• Voltaren 1 % topical gel
• Kenalog 40 mg/mL suspension for injection
• injection/aspiration large joint/bursa (PROC)
2. Tendonitis of left patellar tendon

 

Patient Instructions

Knee osteoarthritis – Discussed treatment with exercises. Continue water aerobics.
Knee injection done today.
Exercises given to strengthen patella tendon at home after pain improves.

 

Like 4/23/19, I also had an issue trying to run to the bathroom a little quicker than usual.  Actually, twice.

September 5, 2019.  I was sorry that I fell asleep quickly and didn’t get my watch off the charger but I know that I slept until 4:35am

Often, i’m tossing and turning to get my knee comfortable, even with the knee pillow from April 10, 2019.  I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!).

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

When I woke up at 4:35, I did have to get to the bathroom quickly but it was ok. Later, about 6:00 it wasn’t so good 😊

Later in the day, I was still limping a bit, perhaps more from habit than anything else.

A bit of pain on the inside of my knee but nothing that required a brace OR Tylenol.

I ordered a new travel container for my growth hormone.  The last “system” was kind of clunky.  It worked fine but required too many components.  This one looks like it will fit in the water bottle compartment of my backpack.  I definitely don’t want another failure.

I’ll be posting a review of the Dison Care Insulin Cooler Travel Case Medication Cooling Bag when we get back  I find it amazing that I ordered the black for $59.00 with a 10% coupon.  The same thing in white is $65.00 with no coupon.

I fell asleep almost immediately, but woke up about 12:30 and never really got back to sleep.  I think I’m obsessing about what to pack for the trip and getting all my work done that should be done before I go.  Also, an ear work of a handbell piece we’re working on.

September 8

I got 6 hours sleep last night!  7. 37 with a nap.  WooHoo!

September 9

The big pains are mostly gone.  Every now and then will be a little twinge.  Yesterday, I felt a little unstable on my knee but nothing major.

I think I’m ready knee-wise for this cruise.

September 12

I had a new type Death Dream last night but I doubt that it’s related to the injection. In this one someone was coming at me with a knife.  Hopefully, this was a one and done!

So, I’ll post this just before the cruise, then, the next update will be…later.

A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.  Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/

May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

 

September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection).  I did notice some sleep issues that first night, probably since I had the cortisone so late in the day

It was wonderful and got me through a cruise to Maine and Canada.  In Bar Harbor, I overheard some women talking about their knees.  One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee.  I’ve asked a couple doctors and Dr. Google.  No one seems familiar with that idea at all.

It also got me through our son’s wedding in October, including climbing stairs! 

It also produced one of my only smiling photos, ever!

December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection.  We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots.  He hadn’t thought I should get this.  But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.

By then, the knee pain had returned, anyway, so no issues.

March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women”
This is very good – much stronger than the one I mentioned below on September 8, 2018.  The only real issue I have with it is that it bent, so I have to bend my knee to put it on.  The other one is completely straight and just wraps around.

The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.

I do love that they’re making products for people with latex and neoprene allergies,  though!

 

April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.

On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.  Not fun!

When I got home, Tom was sure he could do it…but he couldn’t either.  He drove it into Advanced Automotive.

One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.  

Could have been even more serious!

They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.

Car runs like new now 🙂

So, I missed my first appointment but got a “new” car.

April 10, 2019, I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.

I think over time, the elastic may stretch out, making it harder to keep on.

The whole is covered with a washable velour-like fabric.  The price was reasonable enough that I could buy another one if/whey that strap expands too much.

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

During this time, my pain was so bad that I was considering surgery – later.

April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection).  This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.

I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September.  These look like places I will want to walk!

She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months!  I could have saved myself a lot of issues in early 2019 had I known that   So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.

For reasons known only to her, she did the injection in my inner knee-cap.  Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.

She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.

Death Dreams.  I don’t think I’ve posted about these before but I used to have them quite often.  I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection.  The first was about 6:00 PM.  I’d fallen asleep for a nap and DH was talking to me (in real life).  I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service.  I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.

The next was similar about 3:00am on 4/23/19.  I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was.  I just knew I needed to take “something” to stay alive and wasn’t sure what that was.  I looked through my phone for ideas and checked the meds by my bedside.  Nothing.  Finally, I woke up more completely and realized it had been another dream.  I also picked up my Kindle and went back to sleep for another hour.

This morning (4/23) there’s still a bit of discomfort but I can deal with that.  I also had a bit of trying to run to the bathroom a little quicker than usual.  I also don’t remember that from before but I assume it will go away soon.

I hope this shot lasts nearly 3 months, too!  That would take me to mid-July. 🙂

I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:

 

Starting September 2, 2019, if I get 4 shots a year they would be: September, December,  March, June, September.

Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May,  September


After my April 22, 2019 injection, things were mostly better for a while.

May 12, I went to a Celebration of Life service where the chairs were so incredibly uncomfortable.  They looked really nice but… I had trouble sitting.  I’d have to bend part way, put my arms on the armrest and fall the rest of the way.  While seated, it was a weird angle, so I didn’t like to sit but standing back up was very difficult.  My knees were stiff and painful through the next week.

Things were okish for a while.

June 7, we went to NYC and did a lot of walking/stairs which always makes things a little worse.  Around this time, my right leg started having an aching (bone?) pain.  I’m hoping that it’s “just” sciatica.

June 18, it was time for another stupid accident.  I got home from work, put my car in gear and the emergency brake on.  I stepped out of my car with my left foot planted on the driveway.  Somehow, the car rolled backward, twisting my knee.  Three Tylenol and a brace.  Of course, it was one of the braces I’m allergic to so I then had to take a Benadryl.  I’ll find one of my non-allergenic braces a little later.

June 22 – back to “normal” knee pain. Rest, keeping my knee up, a non-allergenic brace and Tylenol all helped.

 

Stay tuned for…

PSA—to test or not

How should a man decide whether to have a PSA test? In the UK, routine testing isn’t offered, but men over 50 years old can request the test from their GP. Digital decision aids abound, but do they help men to reach a decision compared with usual care (discussing the pros and cons with a doctor)?

This systematic review and meta-analysis of 19 randomised clinical trials comparing decision aids for prostate cancer screening in 12 781 men found that decision aids are probably associated with a small reduction in “decisional conflict,” possibly associated with an increase in knowledge and possibly not associated with whether physicians and patients discuss prostate cancer screening or what screening decision the man makes.

PSA is an imperfect test, and no amount of shared decision making can get round that.

From https://blogs.bmj.com/bmj/2019/07/03/ann-robinsons-journal-review-3-july-2019/

Bee’s Knees 5

This is a continuation of an ongoing knee issue.  It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.

What’s happened since the “quick kneecap recap” below:

After my April 22 injection, things were mostly better for a while.

May 12, I went to a Celebration of Life service where the chairs were so incredibly uncomfortable.  They looked really nice but… I had trouble sitting.  I’d have to bend part way, put my arms on the armrest and fall the rest of the way.  While seated, it was a weird angle, so I didn’t like to sit but standing back up was very difficult.  My knees were stiff and a pain through the next week.

Things were okish for a while.  June 7, we went to NYC and did a lot of walking/stairs which always makes things a little worse.  Around this time, my right leg started having an aching (bone?) pain.  I’m hoping that it’s “just” sciatica.

June 18, it was time for another stupid accident.  I got home from work, put my car in gear and the emergency brake on.  I stepped out of my car with my left foot planted on the driveway.  Somehow, the car rolled backward, twisting my knee.  Three Tylenol and a brace.  Of course, it was one of the braces I’m allergic to so I then had to take a Benadryl.  I’ll find one of my non-allergenic braces a little later.

June 22 – back to “normal” knee pain. Rest, keeping my knee up, a non-allergenic brace and Tylenol all helped.

 

A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.  Next thing I knew, I had fallen on one knee, my cellphone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/

May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

 

September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection).  I did notice some sleep issues that first night, probably since I had the cortisone so late in the day

It was wonderful and got me through a cruise to Maine and Canada.  In Bar Harbor, I overheard some women talking about their knees.  One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee.  I’ve asked a couple doctors and Dr. Google.  No one seems familiar with that idea at all.

It also got me through our son’s wedding in October, including climbing stairs! 

It also produced one of my only smiling photos, ever!

December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection.  We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots.  He hadn’t thought I should get this.  But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.

By then, the knee pain had returned, anyway, so no issues

March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women”
This is very good – much stronger than the one I mentioned below on September 8, 2018.  The only real issue I have with it is that it bent, so I have to bend my knee to put it on.  The other one is completely straight and just wraps around.

The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.

I do love that they’re making products for people with latex and neoprene allergies,  though!

 

April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.

On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.  Not fun!

When I got home, Tom was sure he could do it…but he couldn’t either.  He drove it in to Advanced Automotive.

One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.  

Could have been even more serious!

They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.

Car runs like new now 🙂

So, I missed my first appointment but got a “new” car.

April 10, 2019, I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.

I think over time, the elastic may stretch out, making it harder to keep on.

The whole is covered with a washable velour-like fabric.  The price was reasonable enough that I could buy another one if/whey that strap expands too much.

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

During this time, my pain was so bad that I was considering surgery – later. April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection).  This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.

I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September.  These look like places I will want to walk!

She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months!  I could have saved myself a lot of issues in early 2019 had I known that   So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.

For reasons known only to her, she did the injection in my inner knee-cap.  Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.

She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.

Death Dreams.  I don’t think I’ve posted about these before but I used to have them quite often.  I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection.  The first was about 6:00 PM.  I’d fallen asleep for a nap and DH was talking to me (in real life).  I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service.  I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.

The next was similar about 3:00am on 4/23/19.  I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was.  I just knew I needed to take “something” to stay alive and wasn’t sure what that was.  I looked through my phone for ideas and checked the meds by my bedside.  Nothing.  Finally, I woke up more completely and realized it had been another dream.  I also picked up my Kindle and went back to sleep for another hour.

This morning (4/23) there’s still a bit of discomfort but I can deal with that.  I also had a bit of trying to run to the bathroom a little quicker than usual.  I also don’t remember that from before but I assume it will go away soon.

I hope this shot lasts nearly 3 months, too!  That would take me to mid-July. 🙂

I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:

 

Starting September 2, 2019, if I get 4 shots a year they would be: September, December,  March, June, September.

Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May,  September

 

Stay tuned for…

National Cancer Survivor’s Day

 

 

Observed annually on the first Sunday in June, National Cancer Survivor’s Day has been set aside to “demonstrate that life after a cancer diagnosis can be a reality.”

Each year on National Cancer Survivor’s Day, events and celebrations are held and hosted around the United States by local communities, hospitals and support groups honoring cancer survivors.  Events may include parades, carnivals, art exhibits, contests and testimonies. President George W. Bush and the National Cancer Institute director each included a commencement at the 2008 celebration.

 

So today is my day and my mom’s day and countless other people’s day.  I’m a kidney cancer survivor – 13 years now!

My mom survived colon cancer TWICE

My sister-in-law survived breast cancer TWICE

My DH survived melanoma and is working hard at surviving prostate cancer.

It hasn’t been all good though.  There have been many more in my extended family who did not survive, including my dad and my aunt. 

 

Congratulations to the survivors on this special “Who Knew” holiday, National Cancer Survivor’s Day

 

 

13 Years Kidney Cancer Free!

WOOHOO

Amazing! It’s Been 13 Years, Already.

Today is the Thirteenth Anniversary of my kidney cancer surgery.  These thirteen years have been bonus years for me.  For my cancer stage, the 5-year survival rate was 81% and I’ve made it more than twice that long – so far.
What were the odds I’d get kidney cancer? According to my “risk factors”, I “should” have had colon cancer because both parents and an aunt had it twice each.  Of course, there’s no guarantee that I won’t get that, too.

And the risk factors for kidney cancer aka renal cell carcinoma? The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

  • Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing’s gift

  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn’t clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op but it’s back now.work

  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?  

  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic kidney disease.  I don’t have that but half my husband’s family does.  Hmmm – wonder if that’s contagious

  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I’ve wondered about this but, you know, it’s too “rare”.

  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you’ll develop one or more renal cell carcinomas.

Not that I know of. 

I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma).
April 28, 2006, I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.
When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthesia they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.
When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.
Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my kidney and cancer.
I owe him, the original doctor, and my Cushing’s doctors, my life.
The following are extracted from posts that were made during my kidney cancer diagnosis and surgery in 2006:
From Alice April 29, 2006
This is Mary’s friend, Alice (Dearest of Power Surge).
I’m not going to go into every detail at this time. I will fill you in on more details as I receive them from Mary and Tom. I’m sure Mary posted on the boards that she recently went back to Johns Hopkins in Baltimore to be retested because the tests that had been done the past year were incorrect and she was getting the wrong dose of hGh for the past year. In any event, she was tested again on Thursday and then returned home. The above is just a preface to create a time frame of events. It isn’t the reason I’ve come here to ask for prayers for Mary.
This is: Mary mentioned to me last week that she had noticed some blood in her urine. She was going to get it checked. As it were, when she returned from Johns Hopkins, she drove her husband, Tom, to get his regular biopsy for his history of prostate cancer.
While in the emergency room, Mary started having cramps in her stomach and when she went to the rest room, discovered a great deal more blood in her urine. Fortunately, she was at the hospital with her husband when this occurred. The cramps were becoming more severe. The doctors checked her out and they found a tumor in one of her kidneys – the tumor is actually the size of the kidney.
At this point and time, the doctors are recommending removal of the kidney and one of her adrenal glands. One surgeon recommended immediate removal of the kidney. Mary and Tom wanted to first talk with her other doctors and will decide on what surgeon performs the surgery. She never left the hospital where she simply went to take Tom for his test. Instead, she was admitted. She had a great deal of pain last night, but it was helped with pain killers. I will provide hospital details later.
She’s scheduled for an MRI later this morning or early afternoon.
I don’t want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.
I know how much all of you love her (as I do), how much she’s done with this site, how hard she’s worked to provide you with so much wonderful information about Cushing’s — plus what a good friend she’s been to so many of you. I also know that those of you who talk to her may want to call her. She needs time to go through all the preliminaries before being inundated with calls.
I will do my best to keep you apprised of Mary’s situation as I receive information. When she gives me the go ahead for giving out the hospital and is ready to take calls, I’ll pass the information along.
Please take a moment to send prayers for {{{{{MaryO}}}}} (she’s “our” MaryO on Power Surge, too) that everything will turn out all right and she will get through this crisis with flying colors.
Dearest
~~~~~~~~~~~~~~~
From Alice April 30, 2006
* Addendum: 9:30 AM – made some corrections to the 5 something AM post.
What a beautiful show of love and support.
I spoke to Mary last night. She had the MRI as scheduled. She spoke with her own doctor and they decided on a surgeon, but it means going to another hospital. She said she’d probably be coming home for a day before going in for the surgery.
I hesitated to mention in my first post that the doctors said they * think the kidney tumor is malignant due to it’s size – 5 cm. I’m sure many of you surmised that, or why would the emergency room doctors recommend immediate surgery. However, as I said earlier, Mary and Tom wanted to consult with her own doctor first. She was told that if, in fact, it is kidney cancer and is detected and treated early and confined to the kidney, the chances for a full recovery are good.
Considering what she’s going through, Mary sounded good. Lord knows, she’s been through so much already. God willing, this may resolve some of the other health issues she’s been experiencing.
Knowing Mary, when she returns home for a day before checking into the other hospital for surgery, if she’s up to it, she’ll post here herself and provide you with additional details.
For now, I’ve told you just about all I know.
Keep up those prayers!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
11 AM Update:
Mary had a brain scan this morning. She was supposed to have a bone scan today as well, but they’re doing it tomorrow instead, so they told her she could GO HOME TODAY (until she checks into the other hospital for the surgery)! She’s thrilled to be going home and I’m sure she’ll be here posting to all of you herself. You know Mary can’t stay away from computers very long. I’d venture a guess that if they looked inside, her arteries and veins would look more like computer cables (ducking).
We love Mary – so keep on praying that everything goes well, that the tests all yield good results and that she’ll be getting better ‘n better until she’s finished with this whole ordeal
(please, God!)
Reminds me of the phrase . . .
Good, better, best
Never let it rest
Til the good is better
And the better, BEST!
Alice
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice April 30, 2006
Update – 2:15 PM:
Spoke with Mary. She’s home. She’s resting. The brain scan, chest/lung x-ray, abdominal scan all came out clean. The only test remaining that I know of is the bone scan, but it’s excellent that the above tests yielded good results.
She’s going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.
Her attitude is very good. She sounds very good and I know, with God watching over her, and everyone showing so much love and caring, she’ll pull through this with flying colors.
It’s easier for me in conveying information to you to do so with an upbeat attitude. I try to avoid thinking of these things as tragedies or things that make me sick. Of course, I’m saddened and sorry that Mary is going through this — and has gone through so much, but such is life. You all certainly know that very well. Nobody hands us a guarantee that life is going to be without problems. And, yes, as the Morton’s salt container says, It never rains, it pours. But my M.O. is to try to keep as positive as possible, especially when in the throes of life’s unanticipated crises.
I believe the expression, “Attitude” is half the battle won.
Mary’s attitude is excellent and I know in my heart she’s going to come through this just fine.
Alice
P.S. An expression I remember my mother using, “The things we fear never happen. It’s the things we never think about that do!”
~~~~~~~~~~~~~~~~~~~~~~~~~~
From Alice May 2, 2006
There wasn’t much to add yesterday. Mary was scheduled for a bone scan, but first had to have the radioactive tracer substance injection (I presume it was injected — she wasn’t sure herself). She was scheduled to have that around 10:30-11 AM, ET, and then had to return five hours later for the bone scan.
I didn’t speak with her last night, but she text messaged me around 6:30 that she was finally home and that the surgery had been scheduled for a week from today, Tuesday, May 9th at 9:30 AM.
I’ll post the hospital information as the time draws near.
That’s about it for now. She’s still sounding pretty good and wants to get the surgery done already!
Let’s keep those prayers going!
Alice
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From Me May 2, 2006
First off, I’d like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say “…and I can’t deny the fact that you like me, right now, you like me!” but I won’t 🙂
I plan to print everything out and take it with me to the hospital as a cheery-upper.
Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.
As it is, I’m currently feeling “normal” whatever that is. If I didn’t know I had a problem, I would think that I was just fine.
I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.
I know that the tumor has been growing for quite a while – it’s very large. I saw the MRI images and even I can tell that it’s not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.
When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an “emergency” (not scheduled weeks in advance) bone scan. Oh, well.
My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital (http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I’m expected to stay there for 3-5 days post op and they don’t anticipate any pesky complications like chemo or radiation at this time.
For now, I’m keeping my normal schedule, avoiding reading horror stories online, eating, sleeping – even napping! – as usual. Sometimes I even forget that I have this little medical appointment next week.
For a non-phone person I’ve talked with so many people these last few days, it’s mind-boggling.
I’m happy to report that all is not lost on the (Cushie) cruise. Someone will replace me – and there will be another cruise later in the year. YEA! My main “concern” on that now is that I’ll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.
In thinking back, I think it’s a good thing that my arginine test was messed up in Sept of 05. If it hadn’t been, I wouldn’t have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.
So, it’s all good
Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like…
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From Alice May 9, 2006, 09:10 AM
I’ve been in constant contact with Mary. Spoke to her at 7 this morning. She, Tom and their son, Michael, were on the way to the hospital. Mary sounded very good as she has all week. She’s going in with an excellent attitude.
She’s probably being prepped right now. The surgery is set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 – 4 hours.
Now, all we can do is pray and wait. Tom will call me after the surgery is over. As soon as I hear something, I’ll make it a point to come back and post what I know.
Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it’s over.
God? You listening? You’ve got someone very special to watch over this morning. We’re counting on you!
Alice
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From Alice May 9, 2006, 12:33 PM
Mary’s husband, Tom, called me at 12:15
He said it’s going to be another 3 hours – around 3:15 PM – before they’re done. Surgery didn’t start as scheduled at 9:30, but more like 11:30. There wasn’t that much he could tell me except that the doctors said, so far everything is going as expected and Tom said, “so far, so good.”
I hesitate to draw any conclusions from that statement because I’m not 100% sure of what the doctors expected, so it’s a matter of waiting until it’s over.
I’ll keep you posted. Keep praying, please!
Alice
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From Alice May 9, 2006, 2:00PM
Tom called at 1:15, but we had a bad connection. We finally connected.
The operation is over. Mary was being sewn up. Tom said according to the doctor, “the tumor and the kidney were removed.” The doctor is calling the operation a “complete success.”
I asked if they saw any signs of cancer anywhere else because Mary had told me originally that they’d said they might remove the gallbladder, too, but they didn’t remove the gallbladder – which is a good sign.
It appears as though everything was concentrated in the kidney.
Thank God. It’s over!
Alice
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From Alice May 9 2006, 07:39 PM
Someone said: “… I told her that I would wait until she was home and feeling much better before I talked to her again and she agreed that she wasn’t sure she would be up to taking phone calls. Again, thank you so much for keeping us updated… this way we can know how Mary is doing without her having to take so many calls…”
That’s exactly how Tom and I feel. Tom suggests people not call the hospital. I wouldn’t even call his cell phone all day. I waited for him to contact me. I know he’s also exhausted. I figured he’d call when he was up to it. He called about 15 minutes ago.
It’s important that Mary get all the rest she can while recovering. Yes, everything turned out well, but she still had major surgery, is on morphine and needs her sleep. It’s important that we all allow her this time to rest.
It just so happened she was awake when he called and he turned on his cell phone’s speakerphone so Mary and I could talk for a minute. I was so happy to hear her voice. She sounded tired, her mouth was dry, but she sounded good.
Because this is a public message board, I prefer not to post details of the room she’s in. If anyone wants this information for the purpose of sending something to Mary, please E.mail me from the address you registered with on the board, and please include your user name. Thanks.
Another thing is that Mary has allergies, so for those wishing to send something to her, Tom and I (and Mary, as we discussed before she went into the hospital) agree she’s better off without flowers.
Finally, Tom said the doctor was very pleased with how her surgery went – that her body was quite robust, that there was very little bleeding, so no transfusion was needed, and he was generally very pleased with the surgery.
It’s been a very stressful day. I love Mary like a sister. We’ve been good friends for 11 years. I cried so after he initially called and said everything went well. I know all of you love and care about Mary, too.
All I’ve thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.
That’s about it for now — she even cracked a personal joke when we said goodbye — she’ll be back to her old self again before too long.
Alice
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From Alice May 13 2006, 08:10 PM
Saturday Update on Mary:
When she’s back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.
She’s doing well. The worst part is the incision which is quite large because the doctors originally anticipated the possibility of having to remove the adrenal gland above the kidney that was removed and the gall bladder as well. However, as I posted earlier, once they got in there, everything was found to be clean so they just took out the tumor and the kidney (as if that’s not enough). So, when she gets up to go to the bathroom, the incision is quite painful. I imagine an incision of that size will take a while to heal. Other than that she says she feels good!!
Additionally, the doctor was awaiting the results of the lymph node biopsy (just to be sure) and he told her yesterday, “everything looks clean.”
She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!
Spoke to her after she arrived home (sorry I didn’t post earlier, but also have my Web site to deal with).
She sounded great and was glad to be home especially since a new person checked into her room yesterday and Mary wasn’t able to sleep all night.
That’s all for now – and all very good news, thank God!
Alice
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From Me: June 17, 2006 post-op:
Thank you all for your prayers, good wishes, cards, phone calls, gifts, general “cheery-uppers”. They all really helped me on my road to recovery.
I do have a ton of thank you cards to send out to lots of people – I’m very slow at that. Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse 😦
I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren’t so great. Of course, they were awful before. I can no longer take the GH even though I’m deficient. In 5 years (if I survive!) I can take the GH again, supposedly.
I’ve had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed – at least I think that’s what set it off. If I hadn’t had all the blood and pain for one day only, I’d have had no clue that I had this cancer and who knows what would have happened in that next week.
I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.
During my time of thinking, I have also been thinking about making changes to the boards based on what I have heard was going on here. I am not yet sure how these changes will manifest themselves but I do know that bashing others will not be tolerated. More on this later, in another area.
Again, thank you for all your support!
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From Me July 6, 2006
Since I recently had surgery for kidney cancer, I’ve been looking around for another board to read and talk about this with other survivors (hopefully!) I haven’t found anyplace I’d like to visit or feel comfortable with yet, so I decided to make a new area here.
I know – or I think I know – that no one else here has had kidney cancer, although I know at least 1 other person has had a kidney removed and several others have reported kidney stones and other possible kidney diseases.
I’m sure that my recovery will be much the same as for any other major abdominal surgery, although I’d like it to be faster.
Before my surgery, I didn’t have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe… Just boom, there it is. Cancer.
Now that I’m about 8 weeks post-op, I’m thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn’t a cell hiding out.
I know I have to be careful with meds – no NSAIDs so my arthritis is worse. No GH – it’s contraindicated for 5 years…assuming I’m cancer free then.
I’m supposed to be eating less protein, more fruits/veggies, drinking more water.
And I’m supposed to avoid playing football and other things that might damage my remaining kidney.
Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.
Sometimes, at night when I can’t sleep, I wonder why I was lucky like this. What haven’t I done with my life that I should. Seems to me that I’ve accomplished what I should already.
And, in the night, I worry about the cancer returning, taking my other kidney or worse.
At this time, there’s no standard chemo unless it’s metastasized, although there are some promising clinical trials and radiation doesn’t seem to work for this kind of cancer, so if it returns it’s more surgery.
I suppose I could/should have put all this in my blog, but I put it out here in case anyone else should need this in the future. I hope not!
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From me Aug 19 2006, 01:25 AM
Thanks so much for asking!
Unfortunately, I haven’t read the boards much lately – I’m spending most of my online time deleting/banning the InstaChat intruders.
I have been working on the websites, though, and that’s always fun! I’ve even added a new one to the roster and it has some cool stuff on it. New features to be announced in the upcoming newsletter.
I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.
I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.
I’m having trouble sleeping (1:20 AM here, now) although I’m always tired. My mind plays all kinds of tricks in the night. Those InstaChat people don’t help, either! When I wake up just a little, instead of falling back asleep, I’ll go check to see what they’ve done.
Whine, whine!
On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!
Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…
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From me May 8 2008, 11:07 PM
I am feeling very maudlin, a bit down and depressed. It’s very nearly the anniversary of my kidney cancer surgery. I posted this in my blog a few days ago:

I’ve been feeling weird for about a week now. Last Friday, I went through the whole “Sending Prayers” topic (MKO’Note: this thread) that my good friend Alice started for me.After I read that, I started reliving all the kidney cancer events…again. I know I shouldn’t do this. My counselor says that this is a very stressful thing to do and it’s not good for me, for anyone. But I do it anyway, especially the pituitary and cancer surgery anniversaries. I wish I did this with good stuff, could relive that instead of the scary and painful.
After I finished rereading all that, I went back to my post in the cancer section: I guess I’ve talked about this more than I think! I just wish there was someone I could get answers and support from. I have never met anyone in real life who has shared my particular brand of cancer, haven’t talked to anyone on the phone or emailed anyone.
I even asked at my local cancer support center about support for me – they have all kinds of meetings, mainly for breast and prostate cancer, but other kinds, too. But they said that there weren’t enough kidney cancer people to have a meeting. The one and only book that the library there has on kidney cancer was given to me by the author to donate there.
Lucky me – two rare diseases that no one gets. According to statistics I should be a black man who smokes and works in the iron and steel industry or is exposed to certain chemical and substances, such as asbestos (a mineral fiber that can be used in construction materials for insulation and as fire-retardant) and cadmium (a rare, soft, bluish-white chemical element used in batteries and plastic industry), also increase the risk for renal cell carcinoma. I should have polycystic kidneys and not drink the copious coffee.
So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?
And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.
Although I’m not afraid of death and would like it to be as peaceful and pain-free as possible, I still dream at night that I’m dying or have died. These dreams have been going on since before the cancer and I can’t seem to shake them although I’m taking them more in stride now and can go right back to sleep.
And from last year’s post on this topic, these still concern me:
What if the lung nodules that “aren’t growing” turn out to be something on the next scan? Is the stomach distress I’m currently feeling a cause to ask for my next colonoscopy a bit earlier?
Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?
What if, what if…?
Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.
Had they told me in 2006 that I only had a year or two to live, I’d have thought it far too short a time. I guess how long a year is depends on the frame of mind!
I hate going for scans because they could show something but I get nervous when there are no scans because there could be something else! Seems like my mind is setting me up for a lose-lose situation.
I’m sure as I get closer to Friday that other thoughts will come to me. I am so grateful that I’ve had these two “bonus years”. I feel like there is so much still to do with the Cushing’s sites and I will never get them done in my lifetime but I plan to keep trucking along!

And from Wonderful Words of Life…
I’m acquiring the title of an old hymn for this next post.
After I was finished with the long Cushing’s diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
i thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.
This verse has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. On my birthday, there was “my” psalm so I had to buy this book!
Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

I carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver. On the other side there is an article I found after my kidney cancer. I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

The Best Day Of My Life
by Gregory M Lousignont
Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!
Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.
I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.
Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.
Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.
Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.
I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.
And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!

When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.