Can we have a forum for "older" people with bc?

Wren44

What a wonderful response from a doc. He's right that you've been a real trooper and it's ok to break down once in a while.

Stopping smoking was the hardest thing I ever did. It took multiple tries before I succeeded. It's hard because smoking can be whatever drug you need it to be. Relaxing, energizing, swallowing anger. They say you can smell better after but not that things don't necessarily smell good. It's been 29 years now and was the best thing I ever did for myself.

ChiSandy

Nanette, have you tried vaping? It’s nicotine (and the ritual) that’s addicting—and vaping eliminates the tars that are both the carcinogens and lung-destroyers. It takes awhile to get the hang of it—Bob (yes, he’s a doctor) just finds it easier to light up and smoke his 2-3 cigs a night than to figure out just how strong a vape he can tolerate and how weak a vape will satisfy, but he’ll get there. My mom smoked 3 packs a day for 50 years, and after my dad (a never- smoker) died she.finally went to a hypnotist to quit at the urging of her own cardiologist—she finally did it cold-turkey at 67. She passed at 85 of “cor pulmonale” (right-sided CHF caused by COPD) and had she never smoked might well have been gearing up for her 99th birthday party this Nov.

MCBaker

Vaping is generally still taking in nicotine; still has the vasoconstrictive properties of smoking. It is still a no-no. BUT part of the addiction is the hand-mouth habit. It might be helpful to try vaping without nicotine. I never had to calculate nic; the weaning process was natural. I would get nic-sick from less and less nicotine as time went by. At the end, I was entertaining myself with no nic. Then I switched to CBD, but I found that to be more effective when taken orally.

Bob could increase his nicotine in order to eliminate the last few cigs.

I am probably more vulnerable to vertigo than people without hearing loss, however.

Nanette could try no-nic vaping. If members of her family are still smoking, she has the right to ban them from the house, since she is queen of the castle, and for her it is an immediate health issue. Those who vape could vape indoors, so long as they refrain from big-cloud vaping.

carolehalston

I quit smoking 36 years ago when dh and I went to Europe for 5 weeks and travelled through Portugal, Spain, France, Italy, and Greece. He smoked a pipe and I was a light cigarette smoker. We took soft luggage that we could carry easily since we would be traveling by train from place to place, using 1st class train passes. We decided to leave his pipe at home and I would not smoke cigarettes because there was a shortage of space in our luggage and we had heard that European cigarettes were horrible.

When we returned home, we became non-smokers. I bummed cigarettes at parties for a few years and then eventually became a total nonsmoker. Now when I look at cigarette smokers, I think, "What a stupid habit." I'm so glad not to be one of them. Admittedly I was never as addicted as some people who reach for a cigarette first thing in the morning.

DH and I set up our booth at the farmers market yesterday and did not do as well as the two previous Saturdays. Shoppers were more interested in the veggies a few of thee vendors had brought from their gardens. I paid $2 for 2 cucumbers and $5 for two small bunches of beets.

Today I am enjoying a lazy Sunday morning and watching the three political talk shows that I enjoy watching. I particularly like listening to the panels discuss the week's happenings.

IllinoisLady

You are something new in this world. Be glad of it. Make the most of what nature gave you. In the last analysis, all art is autobiographical. You can sing only what you are. You can paint only what you are. You must be what your experiences, your environment, and your heredity have made you. For better or for worse, you must cultivate your own little garden. For better or for worse, you must play your own little instrument in the orchestra of life. -Dale Carnegie,

IllinoisLady

Nice morning ( warmer than I like though ) today with the sun out and a very slight breeze. Not enough to cool you off. I think rain is coning tomorrow.

My parents were smokers so I grew up with it. Back in the earliest days of my smoking warnings had not come out and frankly, I do think there were tobaccos' that were slightly better and less chemicals in the papers that were used. Also, I'm not sure how many 'addictive' chemicals were being added at the time. So despite having your same feelings Carole ( what do you think putting something in your mouth ( and lungs ) that is on fire is going to do ) I skated a long time with the notion that I didn't smoke enough to worry about disease. That was entirely foolish because in time I did. I count myself fortunate to be a non-smoker now for a long time. I did feel many of the benefits too -- clothes and houses and cars that weren't smoky. Better taste sensations, and more 'breath', so lots of positive things. Dh smoked as well when I met and married him, but he quit long before me.

Even if we had not done it before, the price is now atrocious and we'd have to take the cure somehow just strictly due to unaffordability. It was a good thing. I'm not into drinking much ( never was save for one brief period ) so my only slightly negative addiction is food. The really good addiction is loving and wanting to care for animals though I am cutting back due to age and ability to keep up physically and financially. It is for the best. I wish to outlive any/all of the animals we have as I'd like to feel sure what happens to them.

Hope you all have a wonderful Sunday.

Anneb1149

Hi everyone,

Just stopping in to say "Hi" and let you know I am still around, but as usual my chaotic life doesn't give me much free time. Welcome to the newbies- you've found a great bunch of friends to hang out with.

I had my 6 youngest grandchildren here the weekend after the 4th, and enjoyed every minute. They hadn't seen each other in a year, and I was pleasantly surprised to see how quickly the youngest two became close buddies.

My brother came back the Tues after the 4th, so he missed the chaos – or we thought he had. Yesterday, my son and his family came over about 2pm. They stay at his MIL's when they are all here. I didn't know they were coming, but I was very glad to see them. They said they were only going to be here for a little while as they were meeting one of my DIL's closest friends at the beach later. They were here for maybe 45 minutes when my son's best friend arrived. We've known him and his family for about 30 years, so, again, I was glad to see him. Long story short, we all left for the beach about 5. The girls played in the ocean with their dad, then we all ate pizza there for dinner. After dinner my brother and I decided to head home at about 8:15. I had just picked up my phone, iPad, etc and told my brother I was heading to bed about 9:15. I usually watch some TV, then read for awhile before actually going to sleep. As I got out of my seat, my youngest son came in. He lives locally, but it's so hard to get together (his bad, not mine). I knew my other son had to come by on his way home, because his friend had left his car here, so I texted him to come in to see his brother. Next thing I knew, we had a party going on. I gave up about 11 and went to bed, my youngest son any my brother stayed up talking till after 2am. Neither of them smoke or drink a lot, but they have this tradition that when they get together, the drink shots and smoke a cigar. I am very happy that Tim is close to my brother. My husband and Tim were not close and I am so glad he has found a father figure.

Other than that, days have been busy. We turned our office/playroom/bedroom in to a real guest room, and, to be honest, I don't know where all my time goes, but I don't spend my days watching TV or reading books. Hope you are all well, and enjoying the summer.

Anne

nanette7fl

Mary and IllinoisLady...thanks for your understanding. And Mary NO APOLOGY NEEDED!! I need to be gotten onto sometimes. I think my family is afraid to tackle me so I'm glad I have friends who will. I did quit in December for a few months but when the mastectomies started going side ways I stated back up again. Well now I will tell on myself. I mistook my chantix for 2 days I thought I was taking week 1 but after vomiting for 24 hours and spending that time in bed sick as a dog i decided to look at my pill pack and realized my mistake of taking week 2 instead...still feel a little queasy and have a poor appetite but still tons better than yesterday. They still make and use Zyban but chantix and wellbutrin are better tolerated.

IllinoisLady

Our smile will bring happiness to us and to those around us. Even if we spend a lot of money on gifts for everyone in our family, nothing we buy could give them as much happiness as the gift of our awareness, our smile. And this precious gift costs nothing. -Thich Nhat Hanh

A smile costs nothing but gives much. It enriches those who receive without making poorer those who give. It takes but a moment, but the memory of it sometimes lasts forever. None is so rich or mighty that he cannot get along without it and none is so poor that he cannot be made rich by it. Yet a smile cannot be bought, begged, borrowed, or stolen, for it is something that is of no value to anyone until it is given away. Some people are too tired to give you a smile. Give them one of yours, as none needs a smile so much as he who has no more to give. -unattributed

ChiSandy

Zyban IS Wellbutrin—just in a different color pill and dosage. Generic bupropion is much cheaper. Chantix may be effective at getting you to cold turkey more quickly, but bupropion—though it does require more discipline—has fewer side effects and the added benefit of controlling other cravings. (In my case, I switched from Prozac to control carb cravings and have been on it now for 20 years—also, as maintenance after postpartum depression 35 yrs ago)

Wren44

I've been on Wellbutrin (generic) for years also. I had a postpartum depression which was followed by 4 or 5 more over the years (I lost count). Each one was worse than the one before and I'm in the 90th percentile to have another, so I'm staying on it the rest of my life. I have no side effects and there are no known dangers, so why not. Certainly depression can be life-threatening. I was taking it when I managed to quit smoking.

keywestfan

Just saw MO for 3 month check. All is normal. Started taking Teva generic every other day on June 15. Every day on July 12. He asked about SEs. Said best way to protect bones and deal with any stiffness is walking. Risk of reoccurrence for me is 10% at 5 years, 18% at 10 if I do not take the pill.If I stay on it, risk is 5% at 5 years, 9 at 10. Says I will most likely die of something else (I'm 85.) If something else rears up, we'll stop the pill, but to stay on it now and prevent metastasis.Also calmed me down says hypofractionated partial radiation was as effective and in no way compromised me. I was worried that I hadn’t had whole breast. So a good day with good news. Very grateful v

HikingLady

keywestfan Thanks for sharing this great news! Yes, walking and exercise are a great plan. You are amazing, and you'll continue to be so for many more years, I can tell!

ChiSandy

keywestfan, mazel tov on the great news and your indomitable spirit. You are an inspiration to us all (and I'm still holding you to that meeting for gelato once my diet allows).

One month into the near-keto diet the N.Shore Bariatric Clinic put me on, at my MO's insistence. (She made the referral back in March, when I was 211 lbs., and thanks to Invisaligns, by the time I had my first clinic appt. in June I was down to 196). I am at 186-3/4, which is the least I've weighed since before I turned 60. (1-1/2 lbs. lighter than when I went on Jenny Craig at age 38). My goal is to get my BMI down below 30, out of "obese" and into "overweight;" will take it from there. I ought to walk more, but I do get some dizziness and palpitations--my BP med may have to be adjusted due to weight loss, maybe even lose the diuretic component. I know I should get back to the gym to resume (actually restart) strength training, now that my L arm has fully healed from last summer's surgeries. Will message my orthopedic surgeon to ask if I need a one-year followup--and if I can have the hardware in my ulna removed (no problems with the screw in my hand, but the plates & screws in my arm occasionally irritate the muscles).

Tomorrow morning I have an early (ugh) appt. with my DDS to not only swap out my temporary acrylic lower molar crown for the permanent porcelain one, but also trim the lower edge of one of my front incisors to make it closer in length to its neighbor. (When it was flared out all those years, the length discrepancy wasn't noticeable when viewed head-on; but now that it's perfectly vertical it's readily apparent. Going through the expense & hassle of Invisalign and leaving my smile off-kilter doesn't make sense). I am a week away from completing the last of 7 aligner trays, and seeing my orthodontist next week for re-scanning for either some "refinement" trays or (fingers crossed!) my retainer. The ortho says to have my dentist do the "equilibration" before the re-scans. My dentist thinks that there's enough enamel to work with without getting too close to the pulp & nerve. But as to whitening, he says to wait and see. Maybe use some whitestrips while the tray is out after dinner; laser whitening might make the teeth too sensitive.

(I love that they do computer scans rather than take those goopy, gaggy impressions)!

IllinoisLady

Hooray to everyone with good appts. Keep up the good work and hoping for good reports from others. Its a hard road but w/o knowing why it can straighten right out.

keywestfan

Hiking Lady, ChiSandy, Illinois Lady- thank you for being with me on this, as I am with you. I’ve learned so much from you and it is so good not to be alone as I was exactly 50 years ago with my. cervical cancer, when I was forbidden to mention the C word to anyone, and knew no one who had ever had it. It is so good to have community

And Sandy I marvel at all your Dr. resources and knowledge and vivid writing. And determination to lose the weight. Gelato on Dempster or whatever, anytime.

ChiSandy

Thanks, keywestfan--right back atcha!

As to the weight, it is true that the estrogen deprivation caused by AIs, just like that at menopause, does slow the metaboliam. (In primitive days, it was probably a survival mechanism to conserve energy and body mass in the face of waning strength due to living past fertility; back then, it was extremely rare for women to live to complete or even begin menopause. But though human existence is but a mere blip after eons of the earth, evolution moves very, very slowly. It's only in the past couple of centuries that scientific knowledge finally significantly outpaced evolution).

However, even though weight gain is likely on endocrine therapy, it can be controlled or reversed. The key is to throw everything we've been taught about "calories in/calories out" out the window and focus on the metabolic changes and processes that are affected by the lack of estrogen. It isn't just about how much we eat vs. how hard we work to burn it--blood pressure, blood lipids and the triad of pancreas/liver/kidneys all interact and have the potential to change as we age. (They don't call hypertension, hyperlipidemia and insulin resistance "metabolic syndrome" for nothing). I've learned that not only is portion control important, but what we eat--regardless of the calories it provides--becomes more important over time. Not just for getting nutrients, avoiding inflammation and optimum digestion--but also for how the body treats it, especially the endocrine system. (And the endocrine system includes all the organs that secrete hormones, not just sex hormones. In fact, the subspecialty of endocrinology was originally developed for the treatment of diabetes). And regarding diet & exercise, exercise is desirable but diet alone is better than exercise alone.

So the diets that worked for us in our youth may not work now. In my case, portion-controlled and low-fat (Jenny Craig, Seattle Sutton, various iterations of Weight Watchers, etc.) which worked before menopause stopped working once I began an AI. For me, tightly controlling carbs (far more tightly than diabetic diets) is crucial. What I'm on is more carb-restricted than the original WW or later stages of South Beach. Its only similarity to original WW is that protein portions are relatively ginormous, and some veggies are "free" vs. some restricted (but unlike WW, the restricted ones are not mandatory). But I can have stuff like babaghanouj, hummus, any meats I want (including prosciutto or Spanish ham), all the eggs I want, olives, nuts, unsweetened almond milk, and occasional cream, whole milk or Greek yogurt. No skim dairy, no sugar, no starches other than the highest-fiber/lowest-carb and only occasionally at that.

Oh, and a tiny piece a day of very dark chocolate--preferably sugar-free. A little goes a long way.

IllinoisLady

The cure for all the illness of life is stored in the inner depth of life itself, the access to which becomes possible when we are alone. This solitude is a world in itself, full of wonders and resources unthought of. It is absurdly near; yet so unapproachably distant. -Rabindranath Tagore

carolehalston

Yesterday made me wonder about my location. MN or LA? It was hot and humid. We had to turn on the A/C and even left it on last night. A rare necessity. It's supposed to be a little less humid today but temperature will get up into the 80's.

I'm signed up for women's 18 holers golf. Sadly my golf game has become so poor that I'm considering quitting. DH enjoys Friday couples golf and I offered to try to get someone to play with him. Then I could meet him afterwards and go to dinner. We'll see what happens today with my golf game. One way or the other, it won't be the end of the world.

This Friday dh has an imaging procedure scheduled in Bemidji. His left leg (vascular issue) is still bothering him. The stent procedure that he had in April hasn't kept his ankle from swelling. He wears elastic stockings, which help somewhat.

Before I started taking the "little white pill" (the name eludes me) in 2009, I read the discussion forum and many women recommended keeping active. So I took that advice and walked three miles and resumed playing golf. Maybe I was just lucky, but I tolerated the AI pretty well. I blamed it for weight gain, higher cholesterol, higher bp, but the real culprit may have been aging. There was no miraculous return to normal when I stopper taking arimidex (I remembered the name!!!). I will forever regret having to stop HRT, the pill of youth. Once I stopped the hormone replacement, I started to age.

Happy Tuesday to all.

IllinoisLady

Wow !! Sandy, that is a lot to take in for being wt. conscious but I do think your right. I've been up and down and know that there is too much fat in my diet and too much sugar. I have lost two or three pounds -- thru a lot of hard work, but its really rugged hanging on. I have been practicing portion control and that is helping more than I'd have thought. It is also easier than I thought. What are your thoughts on Fairlife milk. We have been using that here for awhile and like the fact that it has a great shelf like ( like the Almond/Silk Soy ) milks. I used un-sweetened Almond for a long time before Fairlife came along. The local nutritionist uses it and gave us the nod on it. I lost 33 lbs. on the Wt. Watchers - counting points and 33 lbs. on South Beach -- downfall on both. Not getting right back on after holidays.

Rained yesterday and will do so today as well, but it is making it cooler. The first warn, even partly sunny day will really stoke the humidity. Not looking forward to that, but we are having this El' Nino yr. so it is what we can keep on expecting.

I hope you are all going to have a good day.

I forgot to say how good it was to hear from/about you and your having such a great time with the grands. Hope all stays well with you and hope your brother gets to spend lots of time with you too.

You were in there too Carole. I think ( I've heard it so many, many times ) that walking is one of the VERY best exercises you can do. This really goes for Srs. I would imagine light core exercises and stretchy band work while sitting and some yoga would all be nice additions, but walking is one almost anyone can do. I'd love to walk more around my own neighborhood. Dh doesn't do as good it seems as he used to in walking our roads so I don't get too much.

Puffin2014

Saw my oncologist this afternoon. Originally she'd said that the most current research showed that since I'd had chemo I should stay on the arimidex for another 5 years, and only ordered the Breast Cancer Index test when I insisted. It came back showing that the arimidex would have little effect on preventing a reoccurence for me in the next 5 years. Today she told me that because of those test results I can stop taking my arimidex the end of October. I'm so glad I insisted on the test.

Goldfish4884

Does anyone have any thoughts for me, I am so conflicted on what to do. I am meeting with my oncologist tomorrow to decide where I go now with my treatment. I have tried all three of the AI's, in fact I tried Anastrozole twice. All three gave me terrible bone and joint pain, felt like I was 90 years old. So I have been on a 5 week break but I am sure my oncologist will want me to try Tamoxifin but I just don't know what to do. My onco type score is 16 which puts me at 20% chance of recurrence if I don't take any treatment, with the AI's my risk is 8% and with Tamoxifin my risk is 10%. I had a double mastectomy in October 2017 and started AI's November so have been on them pretty much for a year and a half. I am 71 years old and I don't want to spend the rest of my life in pain and unable to enjoy life. Oh and I'm also having a total knee replacement this September. Any advice would be appreciated, thanks

GiddyupGirl

Goldfish could you perhaps try a half dose of tamoxifen and see if that is tolerable. I have read that even 5mg (a quarter dose) offers some protection.

HikingLady

Goldfish4884 So sorry you're going through all those discomforts with AI's.

I was on Tamoxifen for 5 years (b.c. #1--see my Dx history in my signature), and I tolerated it just fine. No pain, no discomfort.

I hope your discussion about options, benefits, risks, side effects, quality of life, etc. with your MO tomorrow will guide you to a plan that feels comfortable.

Goldfish4884

Giddyupgirl: Thanks for the suggestion, I might just do that, try to slowly introduced the Tamoxifin.

HikingLady: Thanks for the reply, I might give the Tamoxifin a try. I've enjoyed reading your encouraging posts, in fact I started a water exercise class last week, love it. I had to give up my regular walking program, having knee replacement surgery, but water aerobics should help keep me strong for upcoming surgery

ChiSandy

Goldfish, one side effect Tamoxifen should not give you is bone pain, since it actually has some bone-strengthening effect. It works differently from AIs, which drastically reduce the body's estrogen production; whereas Tamoxifen blocks the tumor cells' estrogen receptors so they can't access estrogen. If you do get bone pain, the over-the-counter antihistamine loratidine (aka Claritin) does a better job of relieving it than anything else, even opioid painkillers--though doctors still aren't sure why. (It's not because it's a non-drowsy antihistamine, because the other drugs in its class Zyrtec, Xyzal, or Allegra don't work against bone pain).

Carole, I had a blitheringly easy (and quite late) menopause, so HRT was never a plan for me.

Jackie, low-fat diets have been discredited for weight loss for several years now--in fact, the low-fat and fat-free diet craze of the 1970s-90s has been shown to have triggered not just the spike in the obesity epidemic but also the sharp rise in incidence of "metabolic syndrome," pre-diabetes, and Type 2 diabetes. Commercial low-fat and especially fat-free foods are notoriously high in refined carbohydrates (especially sugar)--remember those Devil's Food Snackwells? As bad as Hostess Ding Dongs. The only type of dietary fat that should be completely avoided is trans fat: Crisco, peanut butter made by hydrogenating peanut oil, margarine, any fat listed on label as "partially hydrogenated vegetable oil." (I keep Crisco around...but only to season my cast iron pans). And dietary cholesterol does not raise serum (blood) cholesterol.

Fat is not the dietary villain, but sugar is (especially added sugars--including "fruit juice concentrate" sweeteners), either alone (table sugar, maple syrup, honey, molasses, agave nectar, rice syrup) or as simple & refined starches (white flour, cornstarch, corn, white potatoes, rice) and pastas & baked goods made from them. Whole grains are not completely blameless, but their fiber content slows their conversion to glucose. So good on ya for cutting down sugar--but no need to cut back on fat. Not everyone needs to ditch sugar, grains, and spuds--but after mid-life, they're a major contributor to the "spare tire" that has been found not just to play havoc with clothes fitting but also to drastically pose a cardiovascular risk (as well as metabolic syndrome).

As to FairLife, it's touchy. On the one hand, its sugar content (due to its ultra-filtration) is half that of conventional milk--and that goes for its whole, 2%, and skim versions. (Sorry, but the flavored stuff is liquid candy). It does have an exceptional shelf life and rivals conventional, even organic, milk for taste. It froths for espresso drinks just as well as conventional milk. On the other hand, its sugar content is triple that of unsweetened almond milk--so my bariatric NP says it is okay only in occasional small portions, and only the whole milk version. And on the third hand--which is definitely now the dealbreaker for me--are the animal cruelty issues exposed at the Fair Oaks Dairy complex in IN where it's produced.

ChiSandy

Goldfish, as a two-time veteran of total knee replacement surgeries (at age 61 & 62), here's my advice:

1. Unless you know you can safely go home after a night or two in the hospital post-op (e.g., you don't have to climb stairs to get out to & from outpatient physical therapy and you have someone to help you for at least those first few days), start looking at in-patient rehab facilities now. Find a few your insurance will cover, tour them, talk to patients, ask your orthopedic surgeon, and make at least two reservations--in case your first choice is unavailable when you're due to be discharged from the hospital. If it turns out you can rehab at home, you can always cancel the reservations--if it's a really good facility they'll be grateful, as they'll doubtless have a waiting list.

I goofed when it came to my first TKR. Yes, I went to the hospital's "joint replacement boot camp" educational session, but cockily declared I could do my rehab at home (especially since I have a housekeeper). WRONG! I thought I could get to stay in the hospital at least 3 or 4 nights, but was informed I had to be discharged after the second night. (This was at renowned Northwestern Memorial Hospital in Chicago). I could barely shuffle down the corridor with a walker, tethered at the waist to the physical therapist. I was in severe pain on two opioids, plus tramadol and gabapentin. And my house is one of those in which the first floor requires a 7-step climb up to the porch & front door (never mind that the bedrooms are on the second floor). Informed that rehab would require two trips a day to the outpatient PT clinic (and doing the math as to how much two round-trip Medi-Car rides, including being hauled up & down my front stairs in my wheelchair would cost), I realized that I could not yet rehab at home--and NWM wouldn't let me stay even one extra night.

My orthopedist and the hospital's social worker went into overdrive trying to find an inpatient facility--any inpatient facility--that accepted my insurance and had room. They found a seemingly lovely one in a nice Lincoln Park neighborhood--but the food sucked (they ignored my warfarin diet protocol, fed me too much sugar, and I had to pay the nurses to access their caffeinated coffee). As someone using a walker & then a cane, I couldn't carry my own tray and so was not allowed into the cafeteria--I had to take all my meals in my room. Activities were limited to one Sabbath service, daily word-find puzzles aimed at the Alzheimers patients, and one concert on July 4. (When I found it was given by a folk music colleague of mine, I had my guitar brought in and I joined him for a few songs from my wheelchair). It was an "all-illnesses" continuing-care convalescent facility: I was placed on the same floor with hospice, memory care, MRSA and an AIDS patient or two. (One dementia patient kept wandering into my room, castigating me for being his ungrateful daughter who never called or visited). PT was only once a day (in a minimally-equipped room), OT only 3x/week. There was one LPN (no RN) and the rest poorly-trained and uneducated CNAs who were either incompetent, uncaring or overwhelmed. Pain management was a struggle. And there was one off-sitenMD on call, who visited once a week.

So the second time around I asked my surgeon--two months ahead--what facilities he recommended. Two of three were covered by my insurance (I was too young yet for Medicare). I toured them and decided on two I really liked in the same chain (one was joint-replacement only, the other orthopedic rehab only)--and made reservations for both. Good thing--the night before I was admitted (this time to Skokie Hospital, which was like an upscale hotel room with drugs) my first choice called to tell me that both patients in the room I'd booked had to hold over at least a week. The other facility actually gave me a private room. It had an ice cream parlor/espresso bar, regular & decaf coffee (and homemade chocolate chip cookies) available 24/7, first-run movies 3x/week (with popcorn), twice daily PT and daily OT, a full-service salon, and actually had me give a concert. I could have dined in my room, but was also assigned a seat at a table in the dining room--which was a lovely restaurant (we could have one family meal there a week) with excellent food (alas, the wine was off-limits to blood-thinner patients, which was most of us). There was one LPN per unit, one RN per floor, an MD on-site, and caring & experienced CNAs. By the time I was released to home, I had been trained to use a cane to safely walk half a mile to the nearby mall, climb stairs and get a ride to the outpatient PT clinic (after 2 weeks of visiting PT).

2. And I can't stress this too strongly: get a referral for at least 3 weeks of 3x-weekly outpatient "prehab" at your PT clinic of choice. It helped me ambulate more easily when I woke up from surgery, do the brutal 2x-daily PT with less pain and more range of motion, and wean off the prescription painkillers more steadily & quickly.

3. Survey your home and clear it of all obstacles & safety hazards now. Have furniture moved, paths cleared, rugs removed or secured, cords & cables moved out of the way. Get a rollator so you can cook and then use it as not just a walking aid but a cart to get your food to & from your table or easy chair. Have a grocery-delivery service, food ordering-out (GrubHub, Postmates, Caviar) and rideshare account (depending on which knee, you won't be able to drive for 4-6 weeks after you get home, at least till you're off opioids). Set up your base of operations--including a recliner or daybed--on the main floor of your house (or in your apartment). Get a shower transfer bench for your tub, and a supply of trash bags & duct tape to protect your knee when you shower. If you don't have or can't afford these things, check local churches' "lending closets." (You'd be surprised). If you can, have a handheld shower installed (a plumber can easily put in a diverter that allows you to switch off between your regular showerhead and the handheld). Get a special knee-support wedge pillow in advance (will let you elevate with full extension). You will likely also be sent home with an ice-water circulating machine.

4. Get your hair and nails done before your surgery. (Clear or French manicure is best. Toenails will have to be transparent so the anesthesiologist can see how well you're oxygenating and your blood is circulating). You'll feel much better if you don't look like a trainwreck.

5. If you know you will be discharged straight to home, make sure the hospital sends you home not just with prescriptions but the actual meds themselves, already filled at its pharmacy. If it won't send you home with the pills, then get a prescription in advance for your first supply and have it filled before you have your surgery.

6. If your hospital offers a "joint replacement class," take it. If it has an "Emmi" video about your surgery, watch it first. Know that you will be on blood thinners for several weeks to prevent clots that--along with infection--are the two major risks of orthopedic surgery; a nurse will visit you every other day to test your INR (making blood thinner "tweaks" as needed) and take your vitals to ensure you're not getting an infection. You will learn what you should and should not eat when on blood thinners or for as long as the threat of clotting persists.

7. Make absolutely clear which arm is off-limits due to lymphedema risk. Wear a medical ID bracelet if you have one (or ask for an ugly loud pink wristband). Be a pest--tell everyone who comes in to treat or test you not to use that arm. If you have any spinal anomaly (like, in my case, mild scoliosis), warn the anesthesiologist (or resident) before (s)he attempts to place the epidural catheter. (Ask for imaging assistance, like a portable fluoroscope). First time, I neglected to mention it (since I had no problems getting an epidural placed for my C-section 25 yrs. before) and the electric-shock-like pain was unbelievable. Have someone drive you there and stay through the end of visiting hours--and have them take home any valuables if you don't have a secure locker in your hospital room.

8. Expect to be rousted out of bed and walking (with ample assistance) very shortly after you get settled in your room post-op. It will hurt like hell and maybe feel scary (no, they won't let you fall), but it is crucial to prevent clots & embolisms and begin to improve your flexion & extension. Also, after you get to your room & after your first walk, ask if you can change to shorts & T-shirt or nightgown. It'll make you feel better.

9. During your rehab (no matter where), you will curse and swear (go ahead, that's what salty language is for) and wonder why the hell you were ever willing to do this to yourself. BUT by six months out, you will kick yourself for having waited so long. You might not be totally flexy & painless for longer than that, but the freedom you will feel with a new, working knee will amaze you.

Goldfish4884

ChiSandy: Thanks for all the excellent information about TKR surgery. Luckily I have only 1 step into my house and it is all on one level. My husband will be with me and he will take care of all meals and driving me to physical therapy, so thankful for that. I have started taking water aerobics classes to help build up my strength and also have been doing upper and lower body exercises at home based on my surgeons recommendation. I will ask for a referral for pre-op PT, wouldn't hurt just to be sure. My hospital fills your discharge prescriptions for you before you leave. Great idea to take some pj shorts to the hospital. I will be going to a TKR class about a month before surgery. I'm sure not looking forward to the pain but after 3 breast surgeries in the last year and a half and 6 months with the tissue expanders I will get through it , hopefully. Thanks again for all your suggestions. Going to the oncologist this afternoon and will probably start Tamoxifin, low dose. I will try Claritin too, it didn't help when I took the AI-s but maybe like you said I won't get the joint pain.

IllinoisLady

Everybody avoids the company of those who are always grumbling, who are full of "ifs" and "buts," and "I told you so's." We like the people who always look toward the sun, whether it shines or not. It is the cheerful, hopeful people we go to for sympathy and assistance; not the carping, gloomy critics,--who always think it is going to rain, and that we are going to have a terribly hot summer, or a fearful thunder-storm, or who are forever complaining of hard times and their hard lot. It is the bright, cheerful, hopeful, contented people who makes their ways, who are respected and admired.
Gloom and depression not only take much out of life, but detract greatly from the chances of winning success. It is the bright and cheerful spirit that wins the final triumph. -Orison Swett Marden

Wren44

ChiSandy, That was wonderful information. I wonder if someone like AARP might publish it. It's a pretty likely operation for us the older we get. At the very least, orthopedic surgeons should hand it out to patients. It's the little things you might not think of.