Karen passed away yesterday.
I found out this evening.
We hadn't known each other long in terms of years of friendship - only the past 5 years - but we shared a bond of understanding that was of the forever kind. Although we lived in neighbouring communities our paths hadn't crossed until then. It took the internet to get us connected. When I was first having health issues and trying to get a diagnosis I posted a message on a forum for people diagnosed with PH, an illness bandied about by one of my doctors. One of the people on that message board wrote me to tell me that Karen lived close by and might be a good contact person for me. Was she ever.
Her story mirrored mine to some extent. She spent 4 years trying to get a diagnosis only to be told by one doctor to go home and get a life because there was nothing wrong with her. By the time she got diagnosed with PH her disease had progressed so far that medication couldn't halt it's progression. She was soon put on a waiting list for a double lung transplant. Fucking, fucking doctors.
Karen was my cheerleader. Because she had been doubted by doctors, which fed her own self doubt about whether it was all in her head or not, she was so supportive as I tried to get a diagnosis of my own. When I had a doctor look at me and tell me either I had all these funky things or I didn't and maybe I was simply hormonal (and he leaned towards the hormonal conclusion) Karen was there to listen to me cry and vent. In turn I could listen to her as she still doubted the seriousness of her illness, still worried that the fever she had or the abdominal pains were all in her head and she shouldn't bother the doctors. She knew I understood how it screws with a person's mind when the powers-that-be send you home like a chastened child. There was always a hint of this self doubt no matter how sick Karen got. I think it only left during the times she ended up in ICU.
Karen was there as I gave up on getting a diagnosis and stopped going to the doctor. She had done that herself at one point, too. She was also there to listen as my health declined. Eventually I got to see the doctor who was instrumental in getting her a diagnosis. This doctor believed me and told me she would be with me no matter how long it took to get it figured out. Figuring it out took 9 trips of 1500 kms each between June and November of that year plus a 10 day stay in a hospital far, far away. Eventually I had the gold standard test for PH and was found to be borderline. I remember the doctor telling me that even if my numbers had been higher he wouldn't do anything about it until the numbers got much, much higher. The medicine needed to treat it was so expensive that the government wouldn't pay for it before then. I looked at him and said, "so it's a crap shoot really - take me to the brink and then see if the medicine will bring me back." He nodded.
He did run every test he could. They even flipped me upside down for a second spiral CT scan of my lungs looking for the place where my blood vessels were bypassing picking up the oxygen. He was the doctor who referred me to a cardiologist who was so thorough in her listening that it led to a referral to a geneticist and eventually to a diagnosis. A diagnosis that scoops all kinds of funky health issues in because Elhers-Danlos has to do with the glue(collagen) that holds everything, even yours eyes, together in your body. When that's defective there's a never ending list of things that can be funky. I was thankful that funky won out over hormonal. Karen and I had a pet name for the doctor who had previously dismissed me. He had once treated her like a piece of crap, too.
Karen was the one who told me about the spoon theory to help others understand what it was like to lack the energy to do the simplest of tasks. We got so that we could tell by each other's voice how many spoons the other had.
Karen got her new lungs 4 years, 5 months, and 2 days ago. Her husband called on the way to the waiting air ambulance that would take them to a far off city to have the transplant. That transplant gave her several years of a much more normal life although she still spent way more time in the hospital than most people do in a lifetime. A year ago she spent every significant holiday and celebration from Christmas to Easter to Mother's Day to Father's Day to her birthday in July, to her wedding anniversary in August, in the hospital. We joked this year when she made it past several of those events without being hospitalized. Even throughout those days in the hospital she would call and be more interested in what was going on with me than talking about her. She had the greatest contagious giggle and even after she'd broken vertebrae in her back from coughing too hard, she still ended up in giggles. She'd sound like this....giggle, ouch, giggle, ouch.
Sometimes when she would call from the hospital I wondered if this time would be the last time I talked with her. I've lost count of how many times I thought to myself, "this is it, she won't make it through this time." only for her to bounce back once again and surprise even the medical team.
She fought to make it through when her daughter got married last year and when her parents celebrated their 50th anniversary soon after. How she summoned up the energy for either is a miracle. Sometimes she was let out of the hospital just days before the event.
About a year ago she brought up the subject of her death. It was the first time we had that conversation. In the time since she alluded to knowing she wouldn't be here to celebrate her 50th birthday or her 25th wedding anniversary. No too long ago she worried outloud about her remaining siblings because she thought that for sure within 10 years neither she or her parents would be here. Both her parents are battling terminal illnesses of their own. She felt bad that she would be leaving her husband alone.
I last saw her about a month ago. We didn't see each other in person very much. But we talked on the phone pretty much every week up until about a year ago. Even though we didn't talk as often we still connected regularly. I knew if I didn't hear from her for a while it meant she was most likely in the hospital either here or in the big hospital far away where she had her transplant. Sometimes her husband would call and let me know where she was and sometimes I had to wait until she was strong enough to talk on the phone then she'd call and away we'd go again. She always called eventually. I thought this time she would, too.
When I started this blog I wrote a post that explained how I chose the blog's title. I had just been diagnosed after several years of doctors and tests galore. Back then I could choose between breathing and talking but couldn't do both at once on the worst of days. Sometimes Karen would hear me take a breath between words and point it out to me. She always encouraged me to listen to my body. She could hear things in my voice that weren't on my radar screen. It's good for me to remember that. Life has changed so much since then.
When we saw each other last month she was surprised by my weight loss and I was surprised by her frailness. It was as if she'd come full circle from post transplant back to a pre transplant state of health. Her home care nurse helped her to the couch and got her oxygen straightened out before leaving us to visit. We sat on the couch and watched her favourite TV shows together. It was a comforting distraction. It was easier when talking on the phone to avoid thinking about her death. Seeing her in person made me face that she wouldn't always be here. I haven't grasped that reality yet. I'm remembering her voice in my head as I type and hoping it will never fade.
Tonight I opened up the file that holds all her emails. I only was able to read a few of them before I closed the page. I had to stop when I read the following:
"You know, I loved turning 40. My husband had a surprise birthday party for me which was great and although I was diagnosed with PPH, I was thrilled to be 40 years old."
Karen turned 47 last month. She cherished every day she had since diagnosis.
Tonight I will go to sleep in the same bedroom as she once slept. Ironically I live in the same trailer that she lived in over 15 years ago.
I stood at the kitchen sink tonight, the one that she'd once stood at too and let my tears fall into the dish water. I know goodbye isn't forever but tonight it feels so final. Breathe easy Karen, breathe easy.
Love & sympathy on the loss of your friend. When I got amoebic dysentery on a trip to Kenya, it took years for doctors to make a diagnosis and many of them minimised my symptoms or virtually accused me of lying. Such an arrogant profession.
Love and hugs
Requiescat in pacem.
(((Hope))) So sorry, dear friend.
Thank you all. Your words are a comfort to me today.
((((Hope)))) I'm so very sorry.
Oops, I was the anonymous above.
oh hope, i am so sorry for your loss. i will be praying.
Hope, I'm so sorry for the loss of your friend. Thanks for sharing your memories of her with us. You're in my thoughts.
Hope, I've been away from my favorite blogs for several days so I am late, but still, I am so sorry to hear about the loss of your friend.
Cycing up north all weekend (doing that fundraising for child sponsorship) means I am coming late to this news of your loss. I am sorry that loss yet grateful for all you gained in knowing each other.
I am so very sorry for your loss...
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