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« Last post by okarol on January 30, 2023, 02:13:05 AM »
Dear okarol, I am very sorry that you feel like that because your comments do sound very harsh indeed, especially since receiving a kidney-transplant does not only depend on the efforts of family members but mainly on the assessments, efforts, planning and some particular medical thinking of medical staff, nephrologists and nurses … and it also depends on the medical assessments and particular needs of patients etc., it also involves lots of medical skill and help again from doctors, nephrologists and nurses etc.
Are you really sure your family members would still be on dialysis if you would not have mounted a campaign on the Internet? Would not doctors and/or nurses have helped your family members? How about kidney-transplant waiting lists? Of course, there is no need to “go on begging”, because there are surely some non-medical people out there who perhaps could be convinced through humanitarian appeals and plights on the Internet etc. to part with one of their body-parts i.e. kidneys? Especially since there are so many reports of donors suffering terribly after having parted with one of their kidneys (especially the left kidney)?
But, it does come over as pretty unbelievable to imagine that our society can now use the Internet, and especially, that the Internet can now be used as a vehicle for “searching to exchange/receive etc. particular body-parts of living human beings” etc. It just sounds very raw and a bit “Frankensteinish” and comes over as extremely shocking indeed and I am still hoping to have misunderstood your comments?
Best wishes from Kristina. 
Sorry, I am very surprised, I don’t understand how you think my comments are harsh. It’s just our reality. The waiting time in Los Angeles is 10 years for a deceased donor kidney for a type O recipient. At 65 years old my sister might not have lived long enough to get one. With my daughter having 100% antibodies, they said she could wait 20 years. As it was it took 5 years on dialysis to find a living donor for my daughter and 7 years on dialysis for my sister. We were fortunate that 2 people were willing to donate in swaps to save them. No hospital, social worker, transplant team or anyone else helps find a living donor. And tons of people die every year waiting for a deceased donor. I am grateful for the gifts they received. It happens every day, strangers saving others. So sorry if you’re offended.
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« Last post by kristina on January 29, 2023, 03:22:57 PM »
Many thanks SooMK for your kind reply because I try to get my mind around very confusing & negative health-care changes here. Our health system appears to undergo terrible changes which do not make any logical sense and this is very confusing & distressing because surely even people who try to "demolish" a formerly pretty good health system may sometime in the future need a good doctor as well and I wonder what happens when they realize that? Many thanks again for your kind reply and I send you my best wishes for good luck in the New Year from Kristina.
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« Last post by SooMK on January 29, 2023, 02:35:18 PM »
I’m in the US so it’s probably different for you. My insurance doesn’t require me to get written referrals. My neph/clinic might tell me I need to see a specialist and I’m sure they would give me a name if I asked but it would be too far away from my town (two hours) for me to consider it. I usually get a name from either my primary care doc or I ask friends and acquaintances. I also spend hours doing my own research on docs online but I’m not sure how valuable that is. Many common meds are prescribed (after approval from the neph) by primary care. At my yearly clinic visits they always ask about my routine screenings, vaccines, any medications changes, etc. It’s my primary care doctor who does a complete physical exam, labs and evaluation. So some labs might be out of whack and she might be concerned.The patient is the liaison between these specialists, at least for me.
I’m very fortunate to be able to navigate this system (make appointments, remember them, get there, check my results, etc), have good health insurance and am able to make the trek into the clinic once a year. I believe that different recommendations will be made for different patients. I am sure that all these doctors are always evaluating the competency, fragility, finances and support systems of each patient. At least I think that’s true at the clinic which is a large university-affiliated big city hospital. Meantime, I know that many of the doctors—any specialists or primary care—in my area will not give appointments to people who don’t have enough insurance.
I always see the same transplant neph at the clinic who was assigned to me when I had my transplant. I think the system is very flawed and I feel vulnerable sometimes but I think a lot of it, for me, is my location so far from my clinic in the city.
Sending my best to you Kristina!
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« Last post by plugger on January 29, 2023, 08:10:42 AM »
I remember Epoman too! He was a Human Dynamo! Anyway, I thought I would mention it looks like we've got some ugly coming up. I posted about it already in the General Discussion, but this looks like a good place for it too since I believe it will involve our favorite mouseketeer. And I did do an update on the webpage on DE2 I keep up concerning little kenny and davita. And just as an aside. I was listening to some classic Rock this morning and the song 'Mayor of Simpleton' came on. Few people know the story behind the song. It is said the band came upon little kenny singing to his money. (I crack me up) I think there are many good people working for dialysis companies, too bad they are forced to dumb down (hence the village of Simpleton). The first people I think of are the techs who aren't even required to have phlebotomist training. I got that idea from a source I trust - and a state regulator who interviewed us back in the day when we got a Colorado 2007 bill through the the statehouse for the certification of hemodialysis techs. But really, really I'm hoping for a path to redemption for little kenny - through jail!
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« Last post by kristina on January 29, 2023, 01:18:42 AM »
Hello ... and ... I would like to know how many different specialists are generally consulted as a transplant-receiver? For example, if one takes medications to keep the BP under control, is there a hypertension-specialist at the transplant unit or is it “sorted out” through the GP? Another of my questions is, do you consult with one specialist only at the transplant unit or do you consult with a different specialist every time? And, if one needs to see any other specialist for whatever, who precisely makes the referral, is it the transplant unit or is it the GP? Many thanks for answering my questions from Kristina.
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« Last post by MooseMom on January 25, 2023, 09:31:35 AM »
Emil Gilels (19 October 1916 – 14 October 1985) plays the Prelude in B minor (Johann Sebastian Bach / Alexander Siloti)
From the legendary recital at the Great Hall of the Moscow Conservatory.
https://www.youtube.com/watch?v=Yu06WnXlPCY
It is gently snowing outside today; it's beautiful and calm, and this music is perfect for the day. Thank you for posting this. It's lovely.
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« Last post by kristina on January 25, 2023, 03:03:47 AM »
Emil Gilels (19 October 1916 – 14 October 1985) plays the Prelude in B minor (Johann Sebastian Bach / Alexander Siloti) From the legendary recital at the Great Hall of the Moscow Conservatory. https://www.youtube.com/watch?v=Yu06WnXlPCY
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« Last post by kristina on January 21, 2023, 02:51:29 PM »
Alexandra (Doris Nefedov née Treitz, May 19, 1942 – July 31, 1969), better known by her stage name Alexandra, was a German singer. "Grau zieht der Nebel - Tombe la Neige" https://www.youtube.com/watch?v=bAZ9WNToR3shttps://www.youtube.com/watch?v=guE3ig4zTbc&list=RDMM&start_radio=1&rv=xHskeo9ceL4Translation: On a tree in the park of the big city hung a leaf among thousands of leaves. When the night wind sang in the trees the leaf swayed in dreams about the wide glorious world. "If I could just once, like the wind fly with the clouds over the sea, oh I would give my life if I could fly, if I only could fly ..." Autumn came soon and gave the leaves their most beautiful colours and again the leaf complained of its sorrow: "I have to stay and fade away if I only could go with the swans where the summer never ends..." Then the autumn wind cried: "You shall fly! Fly!" And he tore the leaf from the tree, drove it into the great city, let it fly, let it fly. Happiness was brief ... The leaf fell wearily on the street, into its rain-soaked grave Already at the end of its life the little leaf cried in vain up to the silent houses: "If only I could once more fly in the wind! I'd fly back to my tree and the dream would be forgotten about flying ... forgotten ... ...from flying ... from flying ...
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« Last post by kristina on January 16, 2023, 03:28:28 PM »
Beethoven - Overture to "Egmont", Op. 84 (Kurt Masur, Gewandhausorchester Leipzig) https://www.youtube.com/watch?v=ChcrZX2rZ1MFrom the Church of St. Nicolai, Leipzig, Germany (Starts at 1:30) 20 Years Peaceful Revolution - Leipzig commemorates the 9th of October 1989 Gewandhausorchester Leipzig Conductor: Kurt Masur On 9 October 1989, 70,000 people staged a non-violent demonstration calling for more freedom and democracy in the GDR. Thanks to the claim “Peaceful Revolution”, initiated by Kurt Masur as one of six prominent citizens of Leipzig, everything proceeded peacefully. That evening, the Gewandhausorchester played under his baton Brahms’ Second Symphony at the St. Nicolas Church. The following regular "Monday Demonstrations", which came to be described as the “Peaceful Revolution”, became a major milestone on the way to open the Berlin Wall one month later on November the 9th in 1989 and paving the foundations for the reunification of the two German states. Exactly 20 years later, the Gewandhausorchester and Kurt Masur commemorate the beginning of the German reunification by presenting the same symphony at the same location. 
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« Last post by plugger on January 15, 2023, 09:33:47 AM »
Thank you! And I'm wishing for a gentle path for you and yours!
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