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Saturday, December 22nd, 2012
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12:00 pm - Disclaimer.
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First of all, let me tell you a story.
As a teenager, I had an incredibly disorganized room. It was quite a notorious mess and there should have been a photo of my room in the dictionary next to the word "mess". Really. My mother insisted that I keep the door to it closed at all times because the sight was too unnerving for her to handle.
When I was about 15, during my routine search for Hanson posters down at the mall, I found a medium-sized poster that showed an orange-haired girl in a white nightgown, standing with the most nonchalant face expression in the middle of a horribly messy room. The caption read: My room. My mess. My business.
I bought it, took it home, told my parents what the caption means [they don't know English] and hung it on my room's door, on the outside, right underneath the traditional "Lois's Room" sign. I kept the door closed and the poster was there for all to see - and it served as a warning for what you're about to witness if you dare to come in.
A quick Google search yielded not the original image, but here's something similar:
[image taken from www.cjtent.com]
Why am I telling you all this? Because I grew up to apply the same rule to the apartment I share with my husband and our two cats [except that the "my" is traded for "our"], and I'm applying it to my LJ as well. It means that here, I'm free to write about whatever I want and in the exact way and language I deem appropriate to the subject matter. If you don't like it, take yourself to a room where there's a mess you'll like better. (Для особо любопытных - да, я имею в виду тебя - я же для тебя не существую, так что же ты сюда суёшься? А ну брысь отсюда. Цензуру будешь наводить у себя дома, а я верю, что вещи надо называть своими именами.) I am not particularly controversial - as far as I remember, there were no epic arguments here except for one, and I wasn't the one who started it - but there have been attempts to censor me and mold me to someone else's liking, and I will not bend down to that.
I friend people whose LJs I enjoy reading, both English- and Russian-speaking. I write in English and Russian, however the muse strikes me. Many entries here are friends-only, because some things are more private than others and there's a family situation due to which I don't want to write certain things for public access.
All comments to this entry are screened.
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| Thursday, April 14th, 2011
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11:53 pm - (Post by John about Donations)
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I was contacted by one of Lois's LJ friends, asking about to where one could donate in Lois's memory. The two foremost options that come to mind are:
* http://www.spayisrael.org.il/
This organization helps to spay and neuter street cats (and dogs, when needed), including mobile clinics. My mother (a veterinarian) is involved, and they are currently collecting donations for a mobile clinic that would run in the south, including Be'er Sheva, and it is to be in Lois's memory.
* http://www.cff.org.il/Articles.asp?Catid=104
The English page of the cystic fibrosis foundation in Israel.
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| Saturday, March 12th, 2011
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7:01 pm - Memorial Site
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| Friday, February 25th, 2011
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5:16 pm - The Funeral
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The funeral for Lois will take place on Sunday, February 27th, at 16:00, in Be'er Sheva, at Beit Ha'Almin Hachadash. Here is a link to a map:
http://maps.google.com/maps?f=q&source=s_q&hl=iw&geocode=&q=%D7%91%D7%99%D7%AA+%D7%A7%D7%91%D7%A8%D7%95%D7%AA+%D7%91%D7%90%D7%A8+%D7%A9%D7%91%D7%A2+%D7%94%D7%97%D7%93%D7%A9,+%D7%91%D7%90%D7%A8+%D7%A9%D7%91%D7%A2,+%D7%99%D7%A9%D7%A8%D7%90%D7%9C&sll=31.243774,34.770269&sspn=0.036985,0.07699&g=%D7%91%D7%99%D7%AA+%D7%A7%D7%91%D7%A8%D7%95%D7%AA+%D7%91%D7%90%D7%A8+%D7%A9%D7%91%D7%A2+%D7%94%D7%99%D7%A9%D7%9F,+%D7%91%D7%90%D7%A8+%D7%A9%D7%91%D7%A2,+%D7%99%D7%A9%D7%A8%D7%90%D7%9C&ie=UTF8&ll=31.244324,34.7507&spn=0.018492,0.038495&z=15&iwloc=A
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9:40 am - Rest in Peace
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Rest In Peace
Ella Lois Pechony-Levy
Beloved Wife and Daughter
Born December 22nd, 1982
Died February 25th, 2011
Breathe Easy, My Love
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| Sunday, February 20th, 2011
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1:43 pm - Reaching the End
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(Update by John.) We've reached the end-game. The blood pressure is too low (80/40) and they can't get it up. The liquids are escaping from her veins too much and she can't pass urine. It could take a few hours, maybe a day or two, but this is it.
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| Saturday, February 19th, 2011
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10:19 pm - (Post by John.)
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A follower of Lois's LJ sent me a message, asking for an update. So, here it is: The situation is very poor. She is deteriorating on the ECMO and has little time to get a pair of lungs; even if she gets them, it is thought that she cannot survive the transplant, due to her weakened state.
As such, although I'm not ruling out her tiny chance, the future looks bleak. I take comfort in the fact that she is sedated and no longer suffering.
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| Wednesday, February 2nd, 2011
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9:29 pm - Update (by John)
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(Post by John.)
I post on my Facebook more frequently, I had forgotten about Lois's LJ...so the story is this: Transplant from live donors has been ruled out, as it was decided that lobes would not suffice for Lois at this point, she is too weak; she needs whole lungs.
So we are waiting for a cadaver. If she doesn't get it soon, she will be dead. She is on an ECMO machine, which oxygenates her blood, and complications are beginning, slowly but surely, to arise.
This is the Channel 2 piece that was done on her (in Hebrew):
http://www.mako.co.il/news-channel2/Channel-2-Newscast/Article-aedddb348b2ed21004.htm
Here is the translation a friend wrote of what was said on the news:
Ella is a happy
27 year old, and next week she might die. That is the truth, and that is the grim
reality of those on the long organ donor waiting list. Despite the rising public
awareness, there are still very few donation. Mother: You're strong. I promise
you it will be OK. Narrator: There is a lot of love around 27 year old Ella
Pechony's bed. She had CF. She is unconscious and on an ECMO machine
since her lungs collapsed, but her relatives believe she can hear them. Mother:
I promise you that you can come home, and you can do everything. Ella has
fought this terrible disease, which kills most patients before the age of 40, all
her life. Fighting, and at the same time studying, getting married and
succeeding at everything. Narrator: Weren't you afraid of getting into a
relationship with someone who might die young? John: Maybe. I was inlove. I
still am. Ella's one chance of survival is a an urgent lung transplant from a
deceased who agreed to donate his or her organs. Prof. Mordechai Kremer,
lung unit manager: She is in a very critical state. Her lungs do not function at
all. We have about a week's window of opportunity in which, if a donor is found
that will give his lungs, we can save her. Narrator: And if that doesn't happen?
Prof: If that doesn't happen she will die. Narrator: Do you think she'll win?
Doctor Blau, Lung and CF unit manager at Schneider Hospital: Yes. Narrator:
But you're a bit teary eyed now. Doctor Blau: I'm teary eyed because I know the
clock is ticking. Narrator: Dr. Jonathan Cohen and the devoted tea at Beilinson
Hospital's ICU are keeping Ella alive in the hope of finding a lung donor. The
CF organization is outside, supporting the family. This is what these struggles
really look like. And they far too often fail. 70 Israelis are currently waiting for a
lung transplant. Unfortunately, about half of them will die, because there are
not enough donors. The Israelis have a big heart and they love helping – but
they draw the line at organ donations. Only 11% of the population have signed
organ-donor cards. Much less than in Europe. Prof: People don't donate. They
don't understand the importance of a donation. We don't have a solution for all
these patients. If we had a lung ten days ago, this patient would not be in this
situation. Narrator: Before we left, we asked Ella's relatives if they wanted us to
hide her face. They insisted we didn't, since it is important for them that we all
understand that behind the sad statistics of organ donors in Israel are people
who want to live.
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| Sunday, January 23rd, 2011
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7:08 pm - Lois in Intensive Care
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(Posted by John.)
Lois is in the intensive care, unconscious, incubated, and on a heart-lung machine which oxygenates her body for her. Her own lungs have lived out their usefulness; they can no longer supply oxygen to her body.
She apparently develop an infection and crashed as a result. They need to stabilize here, get rid of the infection, and only then can she be eligible for transplant. The heart-lung machine is a temporary solution, and has its risks as well. She will stay unconscious until her transplant.
If someone wants to see her, call me about visiting hours, 052-8-408-970.
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| Thursday, January 20th, 2011
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5:43 pm
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Hey all. I'm still in the hospital.
Had two surgical procedures so far, one one of which was a port replacement. Hello, port-a-cath number 3.
I'm on the lung transplant waiting list.
I made it to 28 years and two weeks before I was listed.
Kudos to me for that.
Cheers for 28 years and two weeks.
We are currently waiting to see if I can get well enough to not need an urgent transplant from living donors [one lobe each] but wait for a regular cadaver donor lung transplant. I am breathing with the aid of a B-PAP machine both night and day and the idea is to have me being able to breathe on my own [with oxygen] during the day - then it means I can wait.
I'm still very weak and with very limited internet access, and can't talk on the phone, so sorry for staying out of touch.I'm reading all SMSs, thanks for sending them.
I can't believe I was/am this close to dying.
This is taking ages to write.
This is all very scary.
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| Sunday, January 16th, 2011
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3:25 pm - Good News: No Cancer
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(Post by John.)
Good news: The biopsy showed that the enlarged lymph node that they had seen on Lois's CT was just caused by the infection she had gotten in her lungs, not something cancerous. She is also a little stronger today. Still a lot of work to do, though.
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| Saturday, January 15th, 2011
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6:54 pm - Update (by John)
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(This is John writing.)
Lois asked me to make a post. She is still very very weak, but shows small signs of improving - in terms of her breathing, almost no more fevers, C02 levels, and other medical mumbo-jumbos.
We are still waiting for biopsy results of something they saw on the CT of her chest - we are hoping it is just an lymph node which had become enlarged by the infection, and not something cancerous. They took the biopsy during a bronchoscopy last Tuesday.
She has a strong will to live, I think, even though she is very scared now. Her mother and myself are here around the clock; a mattress has been provided for us, and we sleep in shifts.
I hope she will have the energy herself to make the next post in the near future. (Although wifi on her floor is poor, so it might have to wait until she has the energy to go downstairs.)
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| Saturday, January 8th, 2011
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6:53 pm
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I'm still in the hospital, no release date in sight.
I think overall I'm a little better. It's definitely not the flu - test came back negative - just a severe respiratory infection. And I was sick as is, and too thin so immune system shot to hell, so there's your recipe for disaster.
This whole week has been a blur of running a high fever and generally being so weak, I was either asleep or otherwise out of it. Yesterday was a crisis of sorts - I don't remember most of it and maybe it's better that way. Today I'm better, I think I've been awake/sitting up for most of the day.
I'm still on oxygen, my saturation is only about 84-85 without it, so I'm on it 24/7.
I've often been too weak to reply to text messages - I apologize for that. But thanks for sending them, I could always read them =)
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| Friday, December 31st, 2010
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7:08 pm
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Сделавши свежий маникюр, решив, какое платье я надену сегодня вечером, и принявши горячий-горячий душ, созрела и я на новогодние пожелания.
Пусть у нас всё будет, как мой папа говорит, на радость друзьям и на злость врагам.
Чтобы со здоровьем всё было нормально и нервишки не пошаливали.
Чтобы отношения с родными и близкими складывались наилучшим образом.
Чтобы мы всегда получали удовольствие от того, чем занимаемся.
Чтобы любили себя, уважали себя и свои желания, и нравились себе в зеркале.
Чтобы у нас в жизни было много интересных книг, кино, музыки, спектаклей, концертов, и прочих развлечений.
А так же много вкусной еды, и при этом чтобы никто не испытывал вины за съеденное.
Чтобы мы почаще собирались в приятной компании.
Чтобы нас не беспокоили Хамасы, Хизбаллы и прочие Аль-Каэды.
Чтобы у нас всё было, нам за это ничего не было, а у наших недоброжелателей болел живот =)
С Новым Годом!
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| Thursday, December 30th, 2010
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4:01 pm
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Got a virus, have ran a fever most of the day, been feeling like microwaved shit spread out on the couch with a blanket, both cats, and a book.
Kathryn Stockett's "The Help" is a wonderful novel, by the way, and it's almost worth it to be sick so that I could shamelessly abandon my academic duties and read it for hours.
Hope I'm better tomorrow because we've been planning to go out for New Year's Eve. I have not been stealthy enough in attempting to hide his present - well, at least he didn't see what it is.
Today marks John and I having been together for five and a half years =)
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| Wednesday, December 22nd, 2010
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8:06 am
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| Tuesday, December 21st, 2010
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5:58 pm
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Life's great as long as kittens continue doing cute things like this =)
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1:47 pm
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| Thursday, December 9th, 2010
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10:30 pm
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Had CF check-ups yesterday.
Weight - up 1.1 kilograms and am now at 41.8 kilos [fully clothed, no shoes, after breakfast]. Woo-hoo! That's much better than the previous number =) Also L the nutritionist asked me if I'd be game for nightly IV (intravenous) feedings, if that's an option we could pursue in my case, and I said I'd go for it; she said she'll talk to gastro and tell them of my case and see if that's a viable option and if we could do that through my port-a-cath. I refuse to get a gastric feeding tube until I'm end stage/waiting for a transplant, but I could try the IV thing. Obviously nightly feedings will be a hassle, but if that's something that could be done, I will grab onto it. I mean, I have not been getting my period again as I've been under 42 kilos for a few months now - that's just fucked up. I'm holding my fingers crossed for IV nutrition.
Lungs - down to 37% [43 a month ago]. I'm on maximal treatment orally/nebulized as is, so I have check-ups again in 3 weeks [on the 29th! Not on my birthday! Yay!] and if it's not better, IV antibiotics.
And it seems that I've caught a cold yesterday. How ironic. I really, really need this one to NOT go into my lungs. I need pneumonia now like I need a zit on my arse, pardon the picturesque grossness.
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| Saturday, December 4th, 2010
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11:58 pm
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Last night I had a pretty dramatic ambulance ride and a jolly visit to the ER due to chest pain that was quite fantastic in its intensity. It felt like a knife stuck in my right lung and went from a 0 to 9 on the pain scale in about a minute and a half or two. I'm pretty used to various chest pains, but that was unique and I couldn't take a breath that wasn't a very shallow one, and I was on the verge of passing out from the pain, so decided to err on the side of caution and John called an ambulance.
I don't remember much from the ambulance ride except for clinging to the oxygen mask and the medic telling the volunteer girl that "cystic fibrosis is a special and difficult disease", but I do remember the deer-in-headlights look the doctor had on his face when he was told the patient is a 28-year-old cystic fibrosis patient. Boy, it's like they never saw an adult CFer before! Which just can't be, because they've seen me before there, and should have remembered me =)
It turned out to be a particularly nasty chest muscle cramp. Damn. I have those from time to time and yes, they hurt like a motherfucking bitch, and yes, they don't let yo draw a breath of air, but fuck, it was never that bad before. Well, I guess it's good to know that this can happen and it's normal, too, so next time I won't need to show up in the ER in my finest ratty sweatpants that are two sizes too big for me and my finest flannel plaid shirt that's four sizes too big for me.
The doctor was cute, though. He had no idea what to do with a CFer with severe chest pain, or, probably, what CF is and how it is managed, but he was cute, I'll give him that.
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lotus82's journal
