Caregiver Diary -- Ray Jonez
Caregiver for my wife, Rose Jonez

Hello, My name is Ray, I am caregiver and husband of Rose. Today is January 25th, 2001. I was reading the diaries, and knew I wanted my own. My wife has been on Flolan for four years, and her pulmonary pressures started around 110. The Flolan and her efforts to live with the disease have resulted in pressures in the 30's. I have found that each patient has their own road to travel with PH, each story and treatment is quite different. There are some threads of similarities too, like the type of person who gets PH - unusually strong people, who seem to bear up well against the odds. There is the thread of terrible mis-diagnosis, and all seem to have the same confrontations with medical professionals who don't know anything at all about PH, yet act like they do. I know about the good, up days, and the down, bed days. I have seen my wife waste away, only to find that a new medical problem has surfaced, to be treated along with the PH. Following threatment for that, (thyroid/pituitary problems) she bounced back, ready for an other round of adjusting the Flolan. It has been five years, and we are up to the challenge of another five, and beyond....

I was moved to tears repeatedly, it was the best read in my life, since she has such ability to capture the feelings we all share at times. I cried for the losses and the insights, my heart goes out to her family, and to my own. I respect her, she speaks the very words my wife finds at times, strong words, anchored in the teachings of life and PH. I am, like her husband, so lucky to have married our best friend, going through the finest and then the worst of times. I am fiercely proud of my wife Rose, and I underestand Sharron's words deeply: "When people get ill, it only heightens what they are inside and sometimes it isnt something nice or even pleasant but it is true." Everything has changed, yet Rose is Rose. She doesn't laugh at my dumber jokes as much, and she enjoys her family so much more - and she really used to enjoy them a lot, so that is something! I love her, and even spoil her a little, and I know how much she means it when she says 'thank you'. You are welcome. (Boy, are we serious today...whooeee!)

OK, I apologize to Sharren for mis-spelling her name the second time, and thanks to her for her email. How about some caregiver secrets: >Get your person a 'Handicapped Parking' plate. >Get a folding wheelchair and have them use it. These two are Quality of Life rules. Your person will not want to use the items for a little while, because our society teaches that these have a negative connotation, and are a sign of weakness. In truth, each will save you both a lot of energy. >Social Security and and Disability are made for people who are ill. E'nuff said. Little things: I take responsibility for having the 'life support pack' in the car when we travel. I mix the Flolan - yes, she can do it, but so can I. I have it down, 11 minutes. Flat. Ask for the hotel room at ground level when making reservations. Ask for an in-room refrigerator too. Learn all you can from the internet, be as educated as you can stand. Watch ALL hospital personnel at all times! Half of them will tell you things that simply are not relavent...The rule is: They do the tests, then we talk, anything not in that order is hot air in your face. A good number will try to stop the pump for some reason, tell them NO. Most GP-level doctors cannot say 'I don't know.' The term is not taught in medical school, what thet are taught is to keep spouting medicotech-talk, and the patient will assume you are god and quit asking questions. You may call a stop to any medical procedure if there is no one (besides you or your significant other) present during the procedure who knows about Flolan or the pump. Tell them you will scrub and attend, I have, and would again. (My wife looked up from the table and started laughing...hmmm) Find a specialist you trust, if they are not a good fit, you will know. It's worth it! Stay calm, and in love. I know it can be difficult, but it is worth it. So this is how I sound - preachy....I will shut it down for now.

Caregiver - What a loaded word. I got up early today, to try to write down my thoughts - I take good care of my wife in this disease, to the point of losing myself in it all sometimes. I have heard myself saying 'we' when talking about it, and have heard other people do the same. The funny thing is, I don't give myself the same level of care that I give her. I am going to my wife's specialist today, I have sleep apnea, discovered late enough to do damage. She asked her doc to see me, since he is a pulmonary specialist, he agreed to look me over to see if the apnea had done any permanent damage. Rose said 'we' would go up to Stanford at ten AM, and I asked her when her appointment was - she answered "It's your appointment, silly." Then I asked her why she was going, wouldn't it tire her, the long drive, and all the waiting around? She stared at me and said "You just don't get it - I am going so I can be with you." She is right and wrong. I get it - and I don't. I get so wrapped up in her illness that she is the patient, and I am the nurse. This is not how I want things, I need to be her lover, and she, mine. But I get things so sideways at times, when her stuff flares up, and I have to push her in a wheelchair, and help her out of the tub, or come home from work and cook. I can get into the 'control issues' thing, the "ego-separation' stuff, even the 'Oh, it's so hard/ I have to do everything' place - and she will look at me and say something like 'Snap out of it!'. Rose is awake, more later, bye.

Friday, February 02, 2001

Back from Stanford, they ran the tests, the last one was a stress-echo...WOW. Laid on the table hooked to EKG, probed with the sonogram while an IV drip ran my heart up to 144 beats per minute and held it there for five minutes - the test took a total of an hour, and told me: GREAT! Not bad for someone with 50 years on him. Gotta take care, got near-borderline diabetis and cholesterol and a bit overweight, but healthy. Now that the sleep apnea if in check I am feeling like doing things again, and I am ready to get going. Rose was pleased too, she had been worrying about me because I took PhenFen for six months during it's heyday, and the sleep apnea had ground me down, the results took the stress off her. Again, my hat is off to Stanford, and Dr Kao.

Speaking of Dr Kao, I was remembering when I first met him, when Rose's family had gathered in her room at Stanford while she had her cardio-catheter test. She looked so pained with the catheter sticking up from her neck, she had to hold her head crooked just to keep from resting her chin on all the tubes, and an IV in her arms to hydrate her while they ran the tests. I believe there were twelve people in the room when Dr Kao entered, and started talking. He spoke softly, and was clinical in his delivery of her prognosis: without sucessful treatment, the average person dies within two years of diagnosis, and it had been a year since the Santa Cruz specialist diagnosed her and sent her home with a 'see you in six months' goodbye. Dr Kao went on for a while, each one of us soaking in as much as we could bear, hearing 'fatal' and 'progressive' and 'brittle health'. He was the angel of death, solemn an cold, reserved and yet very present, with a bitter message. Then he said he could offer a new drug to combat the disease, Flolan had been approved for public use six months ago, and he believed it could help Rose. All she had to do was sign a consent form and she would be wheeled off to have a catheter placed in her chest so the drug could be ported to the damaged lungs, to do its work. I remember her Mom saying "She will sign the paper", and Rose saying she had to think it over, and Dr Kao said "You do that". Some family members looked so stricken I was worried for them, and when the doctor left the room, hugs and tears were the order of the day. Yet, looking back, he was really the first person who gave us hope, Rose's health rebounded following treatment. I respect Dr Kao, and feel that things are never quite what they seem. What was the worst day, turned out to be the best. Gotta go change a Flolan cassette, later.

Sunday, February 04, 2001

It's funny, I click the link for the 'patient diary entry form', and everything I was thinking about writing down vanishes...and when I see some of the mistakes I made in typing the previous entries, I think I should write these in a word processor and do spell-check, but I find that too weird - so here goes:

Loss. My wife and I were very physical lovers, then one day we weren't. No lurid details, but it ended with PH. I believe that her lung pain was so severe, we had to stop. We are still close, and intimate in new ways, but there is loss. I feel I have gone through a time of maturing, of finding that my needs were not the first order of business. I feel that she has been overwhelmed with her adjustment to having a serious illness everyday, that she can have a series of bad days, and not have the energy to say goodnight. We both are bowled-over by the everyday at times. Finding new ways to show that I care has been an eye-opener, I am not sure I have found the way just yet. I see in the other diaries that people think 'Five - ten years left?' and I know what they are feeling, but I find that if I think like that, it never takes me where I want to be - in love with Rose. We just never know - that is the rule on this planet, the bus jumps a curb and the caretaker is gone first. I've read enough O'Henry to see what is up with that thought process. We PH people do find that time is more dear as we go on, smiles are warmer, and kisses more sweet. We say more of what we really mean, and get things out in the open more often than we might have before. We are still the same people, but different. I guess it is never too late to grow up.