Re: reply to Nukhet's post

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Thank you so much, Nukhet.Love to you and to your family,nTo: MSersLife Sent: Fri, March 18, 2011 2:56:53 AMSubject: Re: And now, for something completely different, via n

Wonderful article n, thank you for sharing your life with us.

Love,

Nukhet

Subject: And now, for something completely different, via nTo: MSersLife Date: Thursday, March 17, 2011, 10:36 AM

The following is an article that I was invited to write by Burroughs, Director of the Reachingout Foundation for Cystic Fibrosis.I know and finally got around to sending her some anecdotesfrom my life. I think this is copywrighted by her foundation, so I shallnot post it on the CF lists or groups, but I assume that it will be safe here.Feel free to ignore, delete, shred, or risk the worst by reading this ratherhilarious account of my life with some of my medical conditions, especiallyCystic Fibrosis, which my youngest child, who also has it, referred to it inchildhood as "See IF things get better!"Here it is; I was not able to make the type larger:

Hello! I am n Rojas, age 73+ 8 months and I have ourall too familiar cystic fibrosis. I am a mother and a grandmother.I was diagnosed within the first year of my life by a wonderfulphysician, Dorothy H. , M.D. at Columbia University,who "coined" the term cystic fibrosis, having first found it in thepancreas, then the lungs, then in most every organ in the body.http://www.nlm.nih.gov/changingthefaceofmedicine/physicians/biography_8.htmlI was born on June 7, 1937, premature and underweight. I was diagnosedwith what is now called Meconium Ileus, and my pediatrician, in Detroit,Michigan, knew of Dr. 's work and arranged for me to be seenby her. She advised my parents on vitamins, a high fiber diet, and"lots and lots of fresh air," and cautioned against my being over-heated,over-dressed, and against my losing excess water from my body.My mother took this very seriously; I think that my pediatrician, whomI can well remember, must have been a bit stunned to find that I wasnapping on a 3d floor porch in a perambulator, for the "fresh air"--inall seasons, outside of Detroit, Michigan.This pediatrician advised my mother, should I run a high fever, toput

light-weight

cotton pajamas on me and stand me under a tepidshower, and just allow me to run around the house in the wet pajamas!Part of the reason for all of this is that I was and am intolerant to Aspirin(Acetaminophen and Ibuprofen were decades away), and was severelyintolerant to the Sulfa drugs, though not then to Penicillin.There were few vaccines back then, so I managed to avoid croup, andto survive the real Measles, whooping cough, streptococcus and staphylococcus bacteria, and all the menaces of the 1930s and 1940s. Justbefore I was ten years old, our family moved to Southern Californiaand my medical care became modern--for that era. I had hospitalizations,pneumonias, chronic intestinal problems, the works, but survived longenough to make it into the era of more modern antibiotics, and to

thrive.In fact, I survived, despite all odds, long enough to marry, bear fourchildren, now middle-aged, and to experience widowhood. Whenmy husband was told that his cancer was terminal, he was given elevenmonths to live; he dutifully did so and succumbed on April 15 ("deathand taxes"), having told me that he had always just assumed that Iwould "go first!" He died just before his 58th birthday in 1983, whenI was just short of 46.So, I just kept on, finally, in about 1960, had begun being seen in thethen new Cystic Fibrosis Centers, and I think that I would still beemployed--I am a psychologist--were it not for an injury in 1989,and the fact that having CF does not innoculate one against havingother conditions, and I also have Multiple Sclerosis, osteo-arthritis,four replaced joints (one done twice, five surgeries), and a few otherinherited oddities.At this point in my life, my primary care doctor is a very skilled internist,who has all my past medical records; I have a superb gastroenterologist,a neurologist, and orthopedic surgeon, and ophthalmologist and evena rheumatologist (gout).I have been fortunate to have had superb medical care all my life,and to have come from a family where longevity is the norm. Mymother lived to 101.5 and my father to just over 97 years. Mostof my family, no matter what their medical histories, seem to tendto live long and well. Dr. Dorothy H. was born in 1901,just two years after my mother was born and four years after myfather was born. She, alas, did not live so long as did my parents.I do give myself a little credit for longevity; I am a careful and attentive patient,and

unless I

have some ridiculous doctor, tend to be a compliant andco-operative patient, though an assertive one.There is, of course, humor in every life, and my medical life has beenno exception. Many years ago, on the recommendation of my internist,I had changed CF Centers. All seemed to go very well. . .for a time.Then I was admitted for a Staphylococcus infection with some Pseudo-monas Aerugenosa, and had been treated and all was going reasonablywell. Then the Attending physician visited me--the one who oversees allthe residents. He pulled up a chair and sat at my bed, prepared to talk.I am very tall, relatively dark-skinned, with rather short hair. I was lyingin bed with the sheet and one blanket pulled up to my chin. The doctorleaned forward and said to me, "I think we have identified what is wrongwith you." (I prepared myself for the ridiculous.) He leaned forward andsolemnly said, "We think that you have CBAVD." (Congenital BilateralAbsence of the Vas Deferens, often found in males with CF.) I keptlistening as he explained the ramifications for me, that I would be in-fertile, and that were I to marry, I should inform my wife that I had beendiagnosed with this condition.I waited for him to say more, and mulled over what I might say. Atlast it came to me: "Doctor, you know, that makes sense, as I amfemale, and I rather imagine that most of us have Congenital Absense of the Vas Deferens."I thought that he might fall to the floor in shock. Then I asked him,politely, what he planned to specialize in. He informed me

that

hehoped to become a cardiac surgeon. The thought DID cross mymind that at least his patients would be unconscious. I wishedhim the best, and thanked him for his time.About and hour later, the Director of this particular CF Cliniccame in and apologized and explained that they had both mysweat chloride results and my genetic testing results from theprevious CF Center, and that he was sorry that I had had to putup with what I had endured. I assured him that the humor of itall would get me through it.I myself have mild lung disease, significant pancreatic insufficiency,CFRD (Cystic Fibrosis Related Diabetes), GERD (Gastro-EsophogealReflux Disease with former Barrett's esophagitis, and yet have donereasonably well.

Arthritis

and MS have caused me more anguish.My mutations are: Deltaf508/R5443X; I think that X has been doing itsjob well!I graduated from college in physics, physical chemistry and math--only to discover that in my era it was nearly impossible to go to graduate school in physics, so I considered the other part of life anddecided to study psychology, with an emphasis on the buddingfield of neuroscience. I do not regret it. Seldom does one pick aprofession in which one learns more from the clients than frommost anyone else, especially from the children!Let me say a bit about my parents (My surviving siblings and mychildren have requested that I not say too much about them, soI shall not, save to say that they are all terrific people.)My mother was a professional pianist--someone has to play withthe symphony before the great star arrives; she loved music andenabled me to learn piano

and many other instruments. My fatherwas an attorney, and was of the opinion that I should listen to mymother and do what she said. They did well with all their children,but were heroic with me, their last and unexpected premature baby.I think that I owe my lifelong interest in learning, especially in thesciences, to my having had to live with cystic fibrosis; it affordsone a continuing opportunity for education.And then there is the infamous "www," without which I shouldnever have met the fascinating people whom I have the pleasureof knowing--and sometimes, of meeting, Burroughs among them.Love to all of you, and to your families and your children, grandchildren,all. Thank you for this opportunity to recount the best parts of my lifewith Cystic Fibrosis.n Rojas, Oakland, California

Love to you all,

n