Thursday, March 1, 2018

Care giving and me

My hubby by Feb 2014, had had 3 strokes. He had lost some brain and could no longer drive, but still was a great best friend...we’re in our 51 year of marriage and both are 73 years old... what he didn’t tell me was he was suffering a lot of angina, like for 2 hours at a time. Finally, diabetic and like many men, non compliant to a healthy diet and exercise (he hates veggies and loves fast food and although he was about 30 lbs overweight, he could get away with things like pizza etc, which I hadn’t been able to eat since High School) ... I have a weak gall bladder and a hiatal hernia and a hereditary condition called eosinophilic esophagitis which causes immune challenge and narrowing of the esophagus.... He seemingly got away with his less than healthy lifestyle...he first experienced erectile dysfunction in 1994 which the doctor laughed at and offered him, Viagra...(great for a diabetic prone to heart disease right...😩😩) ED is actually was the first symptom of vascular disease and CAD... no medical provider ever warned a toe turned black in 2016, we were totally unprepared for what was to the ER, they gave him a heart cath test (I later found out that when there is blockage in the legs, there is likely blockage in the heart - another thing no one ever warned me about) and announced to me that he needed a quadruple coronary bypass! Imagine my shock --- he walked into the hospital and seemed "OK".  *sigh*  They also did a popliteal to femoral bypass in the left groin and amputated 3 toes. He came home for a couple of days in the end of February, 2016 but with no wound care, so he came down with septicemia and osteomyelitis and back to the a toe on the right foot turned black!  He lived but was 8 months in the hospital and came home sort of a different person...even his voice had changed, was more high pitched, probably from intubation...and I was thrust into the role of caregiver and had no clue how hard that would be! Not only losing my best friend but tons of work, living with being very tired etc.and grieving the life we had together only a year previously.  He came home from the hospital in November 2016 and I am just getting over the grieving. The shock of a new life in the last few months...very difficult...probably the most difficult thing I’ve ever done in my life but I AM feeling better now and enjoying life more...I suffered depression though, for a long time. I want to write about this because no one prepares you for things like this, and least of all, the medical profession.  I watch TV with him...he’s lost large parts of his brain so I have to explain the story on TV to him often ...I do my workouts...40 minutes a day or 50 minutes and that’s my “me” time, important for care givers. I take a short drive in the car also some days, errands but also "Me time". I sneak some therapy in for him, like hugs for his upper body (he loves that), making him walk to the kitchen, he uses a walker, for his meals, changing his “briefs” while he’s standing up and I do have a CNA come in twice a week to give him a “bed bath.”  I take it a day at a time...sometimes an hour at a time...all we can do. Caregiving is hard! But there is life after the first difficulties.  We even go out together on mobility scooters (those are really nice) and his favorite outing is a scooter ride ending up in a fast food place (what can I say... he still loves fast food... I have been on a low fat diet since 1994 so I don't indulge except an occasional Wendy's junior frostee -only 165 calories and yes, I count my calories daily to keep my weight down - am 9 lbs below my WW goal and about 11 lbs higher than what my physician wants but frankly I don't think I'll ever get down there again. The current WW program doesn't work for me.

Monday, May 8, 2017

Gilenya (Fingolimod) for MS - worth the side effects?

Gilenya, or Fingolimod, was originally developed to treat cancer but in the trials, was considered "unsafe" (too many side effects) for cancer patients.

So now they are really pushing it (heavy TV advertising) for MS (Multiple Sclerosis).

It's, at best, what they call a "disease reducing" drug meaning, it MAY reduce the symptoms of MS and now they apparently have a couple of trials of short duration (1 or 2 years) suggesting this in some patients. Were you to read the trials, you would likely, find they were on newly diagnosed patients who don't have many relapses anyway.  But the side effects, if you read them through, should scare anyone away from this drug (especially if one considers that it was too dangerous for cancer patients!).

Here are some of the side effects...

1. the slowing of heart rate (especially after the first dose). In the safety info they warn the patient to get an ECG to make sure all is OK.  Good stuff, not! Heartrate "usually returns to normal rate". Usually is not "always" and patients are warned to immediately seek attention if they feel dizzy or tired or feel like their hearts are beating slowly. They suggest 24 hour monitoring for the first dose at least. UH, I don't think trading heart disease for a slight reduction of symptoms would be worth this drug, and living with someone with heart disease, I can attest to the fact, it's not pretty.  MS patients are often desperate enough to grab at straws... this one may not be worth grabbing at.

2. But we are not done with side effects.  People with MS tend to have a compromised immune system so I'm not sure they will be pleased to find out that Gilenya might FURTHER compromise their immune system that is, they may get other diseases (including meningitis). Just what you always wanted, right? So the safety info says to warn your doctor if you are feeling confusion, dizziness, neck stiffness, or light sensitivity. (which you can have anyway with MS).

3. Gilenya can cause a usually rare but serious illness called PML because it works by reducing ALL the lymphocyte cells in your blood.  The lymphocytes are kind of like the police officers which go through the blood stream searching for invader bacteria - they attack the bacteria before it can cause a lot of damage.  You don't want to reduce these cells.  They are important and especially in folks with weakened immune systems to begin with. Symtoms of PML can include, lack of balance, weakness on one side of your body, or trouble using your arms and legs (according to the Gilenya safety info)

4. Macular edema or swelling of the macula part of the eye can also occur with this drug, causing vision problems including blurriness, shadows or a blind spot in the middle of your eye.

5. Swelling or narrowing of the blood vessels of the brain which they warn, in the safety info, can cause a stroke (and you do NOT want a stroke which can cause serious disability ADDED to any disability MS may be causing or worse.).

6. Gilenya can also cause shortness of breath or breathing problems.

7. And liver problems - Gilenya can cause liver problems too.

8. Finally last but not least, Gilenya can cause cancer (basal cell carcinoma) so you have to be on constant cancer watch.

A no brainer is, if you are pregnant (which if you have MS you should consider NOT being), Gilenya can harm the unborn baby.

And for all these risks, you are not guaranteed, it's going to help your MS.  The safety info states it CAN cut down MS relapses by 50% - Those don't seem good odds for me.

Not when the old advice the MS society used to give (before they were uh, "romanced" by the pharmaceuticals) of "some sitting, some standing, some lying down" worked the best (with no medications!).  MS typically starts earlier in life than diagnosed - sometimes even in kids and runs a course of about 25 years (as long as it takes your body to replace the lyphocyte B cells some of which are affected by the virus).  It's well worth waiting it out because after it runs its course, you can pretty much regain your former health.  I know that from experience.

Buyer beware - be very careful because in today's crazy society, risky medications are being heavily sold on TV. Knowing that MS goes into arrest after 25 years, if carefully handled, may make it worth waiting for and light range of motion exercises while you are waiting, are a good idea in addition to good diet, lots of rest and patience. And perhaps not indulging in a medication which isn't all that effective and can cause side effects you don't want.

Sadly, some MS patients are desperate for immediate relief of symptoms - so they don't bother reading the small print - I met a lady who had 2 boys and was using a wheelchair.  When she told me she was on "Gilenya", I said,"But that's a risky medication." Her response?  "Who cares", she said, shrugging her shoulders.

Bottom line, medicine is a business, first and foremost.

Friday, June 24, 2016

Medications which can cause hearing loss and balance impairment...

According to an article in the AARP Magazine, certain medications, including some antibiotics used for serious infections like Septicemia, can permanently impair balance and cause hearing loss. Also included in the group of medications causing damage to hearing and balance are large amounts of pain killing NSAIDs like acetaminophen, ibuprofen etc... To check the list of medications, click here.

Monday, June 13, 2016

Essure birth control - lawsuits and many problems

Essure came out in 2002  and was touted as a permanent birth control.  What it is, is a coil placed in each fallopian tube (the passageway to the uterus).

By 2011, complaints were pouring in and an article on CNA in 2016, described some rather horrific side effects.

"Perforated organs, metal coils lodged in the colon, fetal disfigurement due to nickel poisoning, Chronic pain, bouts of depression and suicidal thoughts - it's the stuff nightmares are made of. But these are real symptoms...observed with ...a device, Essure."
(from CNA article, Dec 2015)

The Doctor who invented it, has stopped doing it and a Facebook group to list complaints has grown to 24,000 members.

The listed side effects include "mild to moderate pain and/or cramping, vaginal bleeding and pelvic or back discomfort for a few days. Some women experienced nausia and/or vomiting. In rare instances, an Essure insert may be expelled from the body."

An administrator for the Essure Problems group, said the women in the group have experienced these problems to the extreme.

And should a woman want the insert removed, might have experienced device migration with the Essure coil being embedded in the colon or somewhere in the pelvis.  Essure coils in the colon can cause a blockage.

One woman experienced bankrupcy since the removal of the Essure was not covered by insurance. Worse yet, apparently the only safe and sure way to remove the Essure coils is a hysterectomy.

There is a lot more on this device - but suffice it to say it seems like a very bad idea.  I did a Google search and the first hits to come up were all lawsuits by unhappy Essure people - so you know the attorneys are making bucks.

Friday, October 30, 2015

PPI's for GERD, can cause side effects which can be serious

PPI's for heartburn and GERD were found in a large study, to increase the risk for kidney disease according to an NIH bulletin. Interestingly enough, the prescribing info for Nexium admits kidney disease as one of several side effects. 

Among the other side effects listed in the Nexium info was "atrophic gastritis" (when you kill the stomach acid, you leave the stomach open for that).  In addition to increased fractures from  osteoporosis and more.

I suffered from severe GERD and since the 1980's, had slept sitting up to avoid stomach acid in the lungs (and was unwilling to take Nexium or any of the PPI's because of the side effects). In 2008, my hubby had an arachnoid brain bleed and I lost my appetite.  He was in the hospital for 13 days - the first night I was home alone, I slept better than I had in 20 or more years because I did not have any GERD.  That day, I had a lot less to eat.  On the second day, I decided to go on Weight Watchers (I was a member of the website) and since then, I've never had any GERD. (gastric esophageal reflux)...

Turns out being on Program with Weight Watchers causes GERD to go into remission - no medical provider had ever told me that and when I told  the medical provider I was going to at the time about this, she said "Even before you lost all the weight?"  I answered, "yes! from the first day of calorie restriction on!"

I ended up losing 106 lbs and to this day, I've kept it off - a nice side effect of being on Weight Watchers!

Bottom line, if you suffer from GERD, going on program with Weight Watchers will not only work to put it into remission from the first day but also cause weight loss and more good effects.

Sunday, July 26, 2015

CoEnzyme Q10 for cancer?

According to the NIH, the supplement CoEnzyme Q10 may be effective in protecting against some types of cancer.  They write:

--- Cancer. Research suggests that low coenzyme Q-10 levels are associated with an increased risk of skin cancer. Also, early research suggests that taking coenzyme Q-10 along with other antioxidants increases survival time by 40% in patients with terminal cancer.
 Since this supplement offers all kind of other benefits (it's a great anti oxident for one), my take is can't hurt to take it daily.  It's expensive but then, protecting one's health might be worth it! :)

Wednesday, July 8, 2015

More Bad news about birth control meds and more

update on pills and more

Haven't updated in a while so here is a catch up....

 New birth control device has nasty side effects and is not any more effective than the BC pill (about 60%), if that.  Natural Family Planning... 95% effective and 100% safe - any reason to not switch?  Essure is an implanted device in the uterus but the small coils have been found in several other places in the body like embedded in the colon.  Other side effects women have experienced with Essure, are include perforated organs, fetal disfigurement due to nickel poisoning, chronic pain, exhaustion.

S/ex change operations -  Johns Hopkins is still not doing "gender reassignment" surgery because they found in their studies, a greatly increased rate of suicide in post ops (suicide rate in post ops of gender reassignment surgery is 20% higher than in the general population).

Weight Loss - And in case you were thinking of using "Garcinia Cambogia" (advocated on TV) as a weight loss supplement, you might want to reconsider it - apparently recent studies found it neither safe nor effective.