Happy holidays and some better news...

To all of you out there that have supported us in so many different ways, we thank you so very much .. For now we think of you and thank you again! Yaffa has been in San Fransisco for 2 weeks now. We think that the combination of being in a much better facility, and that it was finally time, she has improved a lot. She is much less noshes, and much less in pain. She is able, most of the time to keep food down. The doctors here seem to be competent, much more attentive and human. ! We found a good Russian kidney doctor. She is on dialysis every day now and is much less swollen. She has started physical therapy and 10 days in to it, she is able to sit a little. It is all very hard, and very, very slow, but nevertheless this time, it really seems to be finally moving in the right direction. We are trying to get the insurance to cover the expenses of the Jewish home, when that time should come. Her improvements are very encouraging. although at the moment she is still very week. They are watching her very closely for the next 10/15 days to make sure no more infections flare up. If you know her, she is as positive as they come, but physically and emotionally she has been put through a lot, and we all know there is much more ahead. . Fortunately or unfortunately our reality is not new and or different. It seems just more challenging and needless to say we are tired. We are over whelmed with playing catch up with almost 3 month of everything on hold, or simply forgotten about. We lost out on so much work, and instead of having a moment to regroup we must keep moving. We are fairly depleted of any resource at the moment. We really hope that it gets better before it gets worse again!!! So please forgive us if we do not respond promptly to calls, and have had a hard time even keeping the blog updated as often as we would like. At the same time we want to thank all the people from the Jewish home that have shown there love and support. We really, really appreciate. For all of you who have expressed the desire to visit, we will let you know as soon as it becomes possible. Thanks again, we wish you all a very happy new year and send our love to all.


P.S. We still need a car ,please keep in mind, it would really make a difference.

Forward di Andre

m: andredb@fastwebnet.it
To: jdebrabant@arrakis.es; r.sarfati@traduzionivecchia.it

; jjlopez11@hotmail.com; joan.haim@libero.it; fmalcangi@tiscali.it; bassanmatteo24@libero.it; laurar37@libero.it; nahumfranca@hotmail.com; lirando@tin.it; yaffa@gmail.com; rosenholzm@hotmail.com
Subject: Yaffa
Date: Mon, 15 Dec 2008 22:21:56 +0100

Ciao a tutti

ho appena parlato con Miriam e poi con Orly che aveva appena parlato con un medico e provo a scrivere quanto mi hanno detto.

Ieri sono riuscite a far trasferire Yaffa dal Kaiser Hospital di Oakland a quello di San Francisco

Fino a 2 giorni fa Yaffa è stata sul filo del rasoio, con momenti di ripresa e momenti di ricaduta.

Continua ad avere una infezione all'addome e mentre i reni non funzionano, se non grazie alla dialisi che hanno deciso di farle giornalmente, ha il fegato danneggiato ma soprattutto non assimila le proteine. E' gonfia e sotto antidolorifici e con fatica le danno da mangiare. Yaffa non può essere nutrita via venosa, solo riesce a mangiare se imboccata, e non il cibo dell'ospedale, ma il pollo organico o pesce bollito che le preparano le ragazze. Però sembra ci sia un miglioramente. Le è passata la nausea. Oggi Orly ha parlato con il medico della dialisi (un russo) che sembra essere in gamba.

L'ospedale dove si trova è più pulito, la seguono meglio e per le ragazze è più facile da raggiungere.

L'urgenza dello spostamento è stata infatti dovuta dal fatto che a Oakland l'ospedale era sporco e l'assistenza scarsa. La Kaiser Foundation, proprietaria dei due ospedali e di altri negli Usa, è una compagnia privata nel campo della salute che Yaffa pagava tramite il suo lavoro come copertura malattia. Questa fondazione non sembra dare assolutamente una buona assistenza medica, i medici cambiano continuamente, non c'è assistenza infermieristica o almeno è scarsa etcc... Sembra che nel passaggio da Oakland a San Francisco, pur essendo ospedali della stessa fondazione, non ci sia stato il passaggio completo della cartella clinica.

Le ragazze stanno tentando di far avere a Yaffa un'altra assicurazione, non più privata ma pubblica che sembra potrà coprire Yaffa anche una volta uscita dalla situazione di emergenza ad un costo di 100 Usd mese. (con la Kaiser il costo sarebbe di 700Usd mese).

Sono in contatto con Tom un assistente sociale con cui Yaffa ha lavorato per 8 anni nella Jewish Home, che sembra essere molto in gamba e le sta aiutando a cercare di modificare la polizza assicurativa. Ha un appuntamento settimana prossima con lui per definire la questione.

Forse potrebbe essere utile che qualcuno di noi, che sappia parlare bene americano, gli telefoni. Miriam è d'accordo. Forse con un contatto diretto potremmo chiarire ancor meglio la situazione e dare una mano su cosa decidere. (da vedere)

Con la nuova assicurazione potrebbero anche cercare forse un ospedale migliore.

Vorrebbero anche cercare un medico che possa seguire meglio Yaffa, fino ad ora sembra che non ci sia mai stato uno solo che l'abbia seguita, ma non conoscono nessuno e per questo nel blog chiedevano aiuto medico.

Il blog non sono riuscite a seguirlo in quanto dovendo rimanere a turno in ospedale e avendo anche da seguire Dilan e cercare di lavorare, non è stato possibile.

La loro situazione economica è resa difficile dal fatto che dovendo seguire Yaffa costantemente, perdono ore di lavoro. Miriam mi diceva che ora che è a San Francisco volevano vedere se riuscivano a trovare tra qualche amico e i volontari della Jewish Home, qualcuno che le sostituisse in modo che potessero andare a lavorare.

Non hanno molti amici a San Francisco. Una amica che le ha aiutate con la macchina, ne deve arrivare una da Hawaii che dovrebbe stare con loro qualche giorno e aiutarle per la casa e Dilan.

Ritornando alla Jewish Home, ho chiesto a Miriam se si poteva fare qualcosa attraverso la comunità ebraica. Mi ha detto che il rabbino del centro è stato già due volte da Yaffa e che farebbe qualsiasi cosa per lei. Sembra che quando si era prospettato di portare Yaffa nel centro, avevano chiesto 400 Usd x gg. Quando lo ha saputo si è incazzato. Sembra quindi ci sia una buona sponda in questo senso, purtroppo per ora non serve ancora in quanto Yaffa è meglio che abbia cure ospedaliere.

Tornando alla situazione finanziaria: Yaffa sembra che fino a febbraio abbia il 100% del suo salario (2/2500 Usd) poi diminuirà non so come e fino a quando. Questi fondi però vorrebbero tenerli da parte. Le ragazze se riuscissero a essere un po' più libere potrebbero sostenere le spese di casa (1700 di affitto + spese). Orly al momento quando riesce a lavorare, fa 3gg alla settimana e prende 1500 Usd al mese. E poi c'è Dilan con tutti i suoi problemi e le sue spese.

Forse nell'immediato, come mi diceva Renata, potrebbe essere sufficiente fare una colletta da inviare alle ragazze. Orly mi ha detto che per loro avere un aiuto è sicuramente utile, quello che sia, ma soprattutto sapere se è una tantum o con una periodicità, in modo da sapere su cosa contare.

D'altro canto non vedo una cosa specifica che potremmo fare a parte parlare con l'assistente sociale se pensate possa essere utile e se qualcuno può farlo. Certo se potessimo dare un aiuto medico, chissà un contatto con un medico che possa seguirla, sicuramente sarebbe utile.

Parlando di prospettive, la miglior situazione che Yaffa potrà avere sarà di poter tornare a casa e di dover essere dializzata qualche volta alla settimana. Sicuramente non potrà più lavorare. Ma per il momento deve superare questa infezione e per farlo deve avere cure mediche, anche se l'ambiente ospedaliero alle volte è più a rischio.

Sono rimasto d'accordo con Orly che se la situazione rimane stabile e non ci sono cambiamenti significativi, loro non si fanno sentire. Cercheranno di aggiornare il blog quando possibile.

Possiamo comunque chiamarle quando vogliamo

Orly 0014154106589 Miriam 0014157240273

(Ps per le chiamate internazionali consiglio l'uso delle Calling Card tipo la Bright).

Le ho anche detto di usare sms per inviarci eventuali brevi news.

Lascio il mio n di cell 00393472618965

Un saluto a tutti e teniamoci in contatto

André

Nota: gli indirizzi che ho

bassanmatteo24@libero.it laurar37@libero.it nahumfranca@hotmail.com lirando@tin.it fmalcangi@tiscali.it joan.haim@libero.it jjlopez11@hotmail.com r.sarfati@traduzionivecchia.it
jdebrabant@arrakis.es

se ne avete altri aggiungeteli

e per comunicare con Orly e Miriam rosenholzm@hotmail.com


P.S.
Faccio piccola corezzione. Il miglior email per noi a San Francisco: support4joan.yaffa@gmail.com anche se hot mail rimane valido. Se riuscite a fare posting sul blog e meglio cosi tutti ......sulla stessa pagina!!

http://yaffa-joan.blogspot.com oppure andate in Goole to Blogger e dovrebbe funzionare

Oggi 18/12 pare che ci siano dei miglioramenti, abbastanza significativi nei risultati degli esami sangue e varie. Ma dobbiamo aspettare qualche giorno per i prossimi risultati per assicurarci non sia un errore. Andre' non ci siamo dimenticate di voi, ho dormito 22 ore di seguito. Sto muovendomi piu veloce che posso. Parlo con Tom. Avviso che vi sto dando il suo numero, spiego un momento chi siete e ti mando sms.entro Un Bacione a tuttti Miriam

Sorry it took so long to up-date

Ciao Tutti,



First and foremost, we want to thank all of you who have with out hesitation help us, we appreciate. Big, big THANK YOU !!! At the moment we can not thank you personally. Rest assure we know who you are, we will track you down, and get to you in do time!!!
The reason you have not heard from us is because the situation is static. Her medical condition is still a mystery. She goes from feeling a little better, meaning not feeling horrible, to feeling horrible. Today for example Orly has been able to make her eat a little. We take advantage of every minute she is not nauseated to get her to eat some protein, or anything she enjoys, otherwise they said they would halve to feed her with IV and that's really no good!!! She has not been able to get out of bed for at least 3 weeks. She remains full of fluid. Her white blood cells had gone down, and they went back up. They are very high. She is totally lucid, aware of the situation, and when passable maintains a good sense of humor. Up to now she has been incredibly resilient, and much to the surprise of the doctors, and all of us, she keeps on bouncing back!! Like if all of this was not enough we fined our self dealing with one of the worse health care systems in the WORLD. Its really pretty unbelievable. The 2 or 3 times we have had to leave her for 4/5 hr to change guard, there where problems. We know that they do not bring her any food if we are not there, they do not change her IVs if we do not check, and they do not turn her every 3 hours. She already has a bed sour!! That is just under the voice neglect . Then comes the malpractice!!! I will spare you the details. We have made official complaints with health department. We are working to transfer her to San Francisco hoping that the Kaiser facility is better, even just a little better. I have no more minutes I must run to try and take care of paperwork for insurance, transfer, and everything else.

We are hoping to be able to share better news in the near future.


Much love to you all Miriam, Orly, Dylan


P.S

For the Italians, please don't tell me you need this translated??? Too bad !!

Andre', cerco di mandarti un po' di informazioni tecniche che hai chiesto oggi piu tardi. Non ho piu un minuto. Bacioni, Miriam

support4 joan-yaffa.

Half of the world knows her as Yaffa, the other refers to her as Joan.

Initially, this blog was created just to alleviate some pressure for Orly and Miriam. The purpose,to allow them to up-date and keep everybody informed simultaneously, saving them a little time and energy. In these situations, every little bit helps. It's been 6 weeks since their mom has been hospitalized. They have really, really appreciated the out pour of concern they have felt from all of you, close and far away friends. Nonetheless it has been very arduous. Their mom has gone from very, very critical, to improving surprisingly rapidly, and just as quickly gone back to a very critical situation. At this point they don't understand what she has.They can not figure it out. It's been a real roller coaster. For the past 12 days she is so critical that 1 of them has to be there ALL THE TIME. The other one, trying to maintain some continuity for Dylan, his needs, and working when possible. So, we decided this was a more efficient way to allow them to communicate with all of you, no matter what time zone you may be in. At the same time it makes it possible for you to communicate with them. Fortunately their mom has surprised us all, including the whole medical team that is in disbelief at how resilient and strong she is. They say "a medical miracle, a medical mystery"

So there are many unknowns in this situation. One thing is certain , that in order for the girls to continue helping their mom, they are going to need some help from all of us who care. Here are some of their most urgent needs.

They need a car. Hospital is in Oakland . What they have done up to now is exhausting, time consuming, and most importantly unsafe. Waiting for buses late at night in the mission or in Oakland is not a great idea. If anyone out there is thinking of donating their car to charity, this seems like as good of a cause as any other. They obviously are in need of economical support. What they are going through is hard and nobody can change that. What we can help with is to alleviate some pressure . When the bills start coming in and you can't pay them, that's when the stress is off the charts.They need all the economical support they can get. Their mom was a big part of there day to day support system. They all lived together and were sharing all expenses, keeping there head above water. Now more $ going out, and much less coming in. Not to mention that they found out insurance will not cover even 1 day of transitional care. In lieu of such tragic life changing circumstances, an account has been created with paypal so that anyone who wishes to send financial support can do so over the internet by clicking here or visiting
https:// www.paypal.com In the paypal site, click where it says "SEND MONEY".
then send it to this email address. "support4joan.yaffa@gmail.com"
NOTHING IS TO LITTLE, EVERYTHING IS APPRECIATED. We would ask of you to please pass this on to anybody you know that is connected to Yaffa -Joan and her family and would like to know about this, and stay informed on her developments. We obviously don't have every bodies address.

They are working hard with the doctors and nurses to understand whats wrong and how they can help her. We are going to use this to voice some request the girls have made in hope that the word will spread and maybe someone knows someone, that can help.
They are trying to get medical records and would like some Kidney, liver, gastric, specialist to help interpret them and understand. We know that 1 of the big problems is that since kidneys and liver are not properly working, she is not able to flush toxins out, faster then they are putting them in. They are open, and welcome suggestions, ideas, alternatives.

No matter the course of events the road ahead is long. At this time, there are very few certainties and much is out of our, or anybody's control. Whether it's her time or not, is not for us to say. The one thing we as friends, as community, whether far or close have control over, is to help and support the girls, in supporting their mom however we can.



For those of you who may be hearing of this for the first time, here is the the story


Oct. 20Th Yaffa woke up with terrible abdominal pain, was rushed to the hospital where she went into “septic shock”. In order to save her life and attempt to find the cause Doctors performed an emergency, exploratory surgery. They found her colon infected. It had to be removed. She now has a colostomy bag.
The septic-shock hit her hard. Her kidneys shut down completely and she’s been on dialysis
ever since. Her liver was also affected badly and is not working properly, either. She is as yellow
as a lemon. The Doctors aren't sure if her kidneys will ever start working again. She may need to be on dialysis forever. The colostomy is reversible, when and if she regains full strength.
The first 10 days in ICU were really “scary” touch and go. All of a sudden, she regained full consciousness, and able to breathe on her own, was taken off the ventilator. The next few days were very promising. The doctors were very impressed with her rapid and dramatic improvements. They upgraded her out of ICU to a regular floor and immediately started talking about dismissing her from hospital, sending her home. Although very happy they thought she was well enough to leave the hospital, we where all shocked to learn that the insurance was not going to pay for any transitional care. With colostomy, dialysis 3 times a week, her blood pressure that see-saws dramatically on a daily basis, can barely stand up on her own; they where wanting to send her home 5 days out of ICU.
There is still no explanation for how or why this happened. Just hours before she was rushed to the E.R. she had been dancing at a street fair, shopping for ingredients to make chicken cacciatore.
Slowly her health began strengthening, again. everything she is dealing with is revisable, so, well worth fitting for. The girls started bringing food from home ( the good organic salmon and chicken) to help her get her strength back. She was enjoying it, and started to walk with the walker a little bit every day. Then about 2 weeks ago she had a big set back. another infection in the stomach. Now its more confusing. They don't know if she contracted it there, or if it has to do with original reason she went in to start with. Her (bile) levels are very elevated. Her white blood cell count very elevated as well. She is constantly nauseated. 18 milligrams of morphine each day, just to manage her pain, and it doesn't seem to be improving. Not to mention the cocktail of antibiotics, that they keep on switching around in hopes that something will work. They are running tests all day, and have a full team of doctors and surgeons studying her case.

Considering all of this, she is managing it like a real pro!!!
We would like to thank you again for all the support and please ,don't be shy ,if you have any ideas, or suggestions regarding her recovery, and or anything else it is more than welcome. We will update as we can, keep in mind it is hour to hour at this time ,She is back in ICU with very low blood pressure . we will keep updating with info as it develops.

Thank You for keeping them in your prayers as we are all in theirs.