Or, my New Reality. The past year has brought many changes into my life, most of them not good. I finally got my doctor to listen to me explain that my swollen ankles and rapidly increasing shortness of breath were not just due to my being fat and lazy. Nope, I have a heart condition called dystolic dysfunction, meaning the blood is slow to fill up my heart and move on to the other chamber. Nothing too serious, apparently, she didn’t even refer me to a cardiologist, I did that on my own. He confirmed that diagnosis, but said he was more worried about my lung function. Off I went to a pulmonary specialist … after months of tests, drugs, one blot clot scare, I was told my “exercise-induced asthma” is really pulmonary hypertension, and when my symptoms didn’t improve with drugs and a C-Pap machine for the sleep apnea that MIGHT have led to this, he put me on oxygen. Here’s what ph is: “Pulmonary hypertension is a type of high blood pressure that affects only the arteries in the lungs and the right side of your heart.” It is not necessarily related to overall high blood pressure – my bp has always been low to normal. “Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although pulmonary hypertension isn’t curable, treatments are available that can help lessen symptoms and improve your quality of life.”
That caused me to wonder “why me?” I have gained weight in the last 15 years, but most of my family are as large or larger. I exercised, until I couldn’t handle it any more, I never smoked, never did illegal drugs, have a fairly healthy diet, good blood pressure, but I’ve got a progressive health condition for which there is no cure except a lung transplant, and nobody else in my family has this. Why me? Why not me? Is it genetic, or does it have something to do with the miracle diet drug combination that was all the rage 15 years ago – until people starting have problems with enlarged hearts and other inconvenient side effects. I got checked, my heart was fine, no harm, no foul, and no weight lose. When I began researching my health problems, guess what popped up in the adds for lawyers in the sidebar – yes, that drug combo is rearing its ugly head again. People who took the combo as long as 15 years ago have developed primary pulmonary hypertension, among other things. I have to try to get my doctor’s attention to find out if that’s the kind I have – and if it is, I might get a settlement from the drug company, but I might not live long enough to spend it. If my granddaughter happens to read this – DON’T WORRY! This is probably not the kind I have. My mother has similar issues and a lot of other health problems I don’t have, and she is 89. She feels like hell most of the time, but she’s still here, and at least her mind is sharp, even though her body is shot. My doctor assure me there are new drugs in the testing stage, new treatments, we’ve caught the problems fairly early, time is on my side. But listen, I’ve had symptoms of both conditions for years, but when I told my doctors, they just blew me off. I was fat and out of shape but otherwise they found nothing wrong. Be your own advocate, you know your own body, insist on being taken seriously when you think there’s a problem.
It sucks to realize I may be disabled within the next decade, or maybe the next 2 years. My new reality is that I will have to lug a heavy oxygen bottle around when I “exert” myself – i.e. walk more than 5 minutes, do housecleaning, go to the mall … Doctors can diagnosis these things, but as my friend Connie, who has COPD and a long history of dealing with the medical profession, tells me, they don’t tell you how to deal with what comes next. After I had a lung catherization that showed no blood clot after all, the nurse called me to tell me to “keep doing what you’ve been doing!” with a big smile in her voice. Doing what I’ve been doing hasn’t helped, the breathing problems just keep getting worse. I’m trying to hope for the best but prepare for the worst, getting my affairs in order, trying not to let my mother know how serious my condition is becoming, learning how to navigate my world with a heavy oxygen bottle strapped over my shoulder, thinking it may be time to ask for a handicapped hang tag because I can’t walk up my stairs without gasping for breath.
My new reality – I had planned to travel after I retire in 2 years, but the rules and regulations involved in flying when you’re oxygen-dependent are mind-boggling. I have begun knocking items off my bucket list – I’ll probably never return to Thailand, never see Angor Wat, maybe soon I won’t be able to go to western Massachusetts for Arlo’s October concerts … Will I be around to see what my brilliant granddaughters become, will I be able to go to their weddings, hold their children? This sucks, did I mention that? Time will tell …
My other new reality – I’ve had my first Christmas as a fatherless child, the first Father’s Day with no one to send a card to, no one to call me his baby girl. I’ve had the first Memorial Day when I visited my dad and talked to a carved headstone. There’s a quote I think about by Mark Halliday in Keep this : “Everybody’s father dies But when my father died, it was my father.” I can say now that my father died last Christmas Eve, and I can believe it and accept it, but when I remember how his last minutes on earth were spent choking and gasping for air because a medical “professional” gave an unconscious man who couldn’t swallow a dose of liquid medicine, well, that anger is still with me, as well as my anger over the lawyers who said we had no case because he was so old his life had no value, legally speaking.
I’ve learned that now that he’s gone, some members of the family are not treating Mother the way he treated her, with love and respect, taking care of her until his frail body gave out. Her last months, or weeks, or days are not peaceful, her very large extended family are not flocking around her, and I have tried to make things better but I’m too far away and it’s breaking my heart. Here is a woman who devoted her life to her family being ignored, neglected, or treated as a nuisance. How can that be? Gotta stop now, my eyes are leaking …
Well, I think I’ll end this now. It’s taken me a long time to put the words on the screen. Isn’t there a quote about “misery shared is misery halved”? I feel better now.
Aug. 5, 2010. I’m feeling better today, physically and emotionally, and I’m ready to add the part where there’s Light at the End of the Tunnel, and It’s Not a Freight Train, Every Cloud has a Silver Lining, Into Every Life a Little Rain Must Fall … I was thinking of a song Pete Seeger, one of my personal heroes, wrote years ago about aging. Pete’s in his 90’s now and still going strong, BTW. The chorus is
“How do I know my youth is all spent? My get up and go has got up and went.
But in spite of it all, I’m able to grin, when I think of the places my get up has been.”
I have been to far away places with strange-sounding names that most people only dream about – China, Siam (Thailand), the Philippines, Taiwan, Cambodia, Turkey, Peru, Nicaragua, Mexico, Guatemala, Honduras, England, Scotland, Wales …and I almost forgot the Arlo Guthrie Blundering through the Alps tour that sent my life in a whole new direction – Germany, Switzerland, Austria, Italy …
Copper Canyon, Mexico
Shirley, Arlo & Annie in front of the Matterhorn
I have worked on archeological excavations in some of those places, even though I never finished that dissertation.
I had wonderful parents, and my dad lived to the ripe old age of 89, and my mother is 89 aiming for 90. I have known love, even if it wasn’t forever, and I have two sons I adore, and four granddaughters any grandmother would be proud to claim.
I’ve done some writing that got published, and even got praised. I’ve got a job I enjoy, and I’m not likely to lose it before I reach retirement age, and I have good health insurance. Way too many Americans don’t have that security these days.
I’ve followed a different path than I’d thought I would, way back in my youth, and it’s been interesting and exciting and sometimes strange, but rarely dull. I’ve met some wonderful people, some famous, most not, who have become great friends. You know who you are, and I want to tell you how much your support and love and strength has meant to me through the years, through the good times and the hard times, and I know you will be there for me in the unforeseeable future, come what may. I might have a lot of years left, there may be a miracle cure in somebody’s lab at this very minute, or maybe not. Whatever happens, I’ll still be able to look back and grin, when I think of the places my get up has been.
Latest news from my friend Connie, who keeps up with this stuff:
“Potential Treatment for Pulmonary Hypertension Discovered
ScienceDaily (Aug. 11, 2010) — Researchers in the Faculty of Medicine & Dentistry at the University of Alberta are one step closer to a treatment for pulmonary arterial hypertension, a potentially deadly disease.
Pulmonary arterial hypertension, which is high blood pressure in the lungs, currently has only a few treatment options, but most cases lead to premature death. It is caused by a cancer-like excessive growth of cells in the wall of the lung blood vessels. It causes the lumen, the path where blood travels, to constrict putting pressure on the right ventricle of the heart which eventually leads to heart failure.
Evangelos Michelakis, his graduate student Gopinath Sutendra and a group of collaborators have found that this excessive cell growth can be reversed by targeting the mitochondria of the cell, which control metabolism of the cell and initiate cell death.
By using dichloroacetate (DCA) or Trimetazidine (TMZ), mitochondria targeted drugs, the activity of the mitochondria increases which helps induce cell death and regresses pulmonary hypertension in an animal model, says Sutendra.
Current therapies only look at dilating the constricted vessels rather than regression, so this is a very exciting advancement for the lab.
“In the pulmonary hypertension field they’re really looking for new therapies to regress the disease, it might be the wave of the future,” said Sutendra. “The other thing that is really exciting is that TMZ and DCA have been used clinically in patients so it’s something that can be used right away in these patients.”
Clinical trials are expected to be the next step. Michelakis is currently working with a college in the United Kingdom to have patients with pulmonary hypertension take DCA.”
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