November 24, 2009
Tuesday
Reading the NephrOnline today and found an article about quality of life for transplant people over time. The authors report that usually transplant get more medical attention and support the first year after surgery and less as time goes on. I think we all know that. The interesting point, however, is that as people get less from the medical support system, they have more hospitalizations and the group representing one year post surgery had generally a better outlook about their future than did the group representing 3 years post surgery. "The side effects of immunosuppressive medication had statistically significant effects on selected psychosocial variables, such as how they judged their health, what they felt they could achieve, how well they coped and their health-related quality of life."
The authors suggest that continued medical support should continue more regularly for more time post surgery than currently. "They also need to provide patients with advice on post-transplant care, immunosuppressive medication and self-care skills, together with initiatives that enhance their positive appraisal of their health, their belief in what they can achieve and their ability to cope effectively."
This research makes sense, and I myself find that I am getting lax on my self care as I meet less with my post-transplant team. It seems like the desire to return to a "normal" life post transplant, at least in my case, has an impact on keeping to the strict timing of taking my meds and no matter how I try to keep the timing a priority, it easily slips into the background, especially when there is a busy social or work schedule, like going to a sporting event and realizing once I am there that I'll still be there when my medication time happens.
I think that as the post transplant team sees me less often, I also pay close attention to my situation less strictly.
11/11/09
385) HAVE A SAY --- TODAY!
November 11, 2009
Wednesday
From the PKD Advocacy Network:
I took time out today to put in my two cents... and you can too...
Wednesday
From the PKD Advocacy Network:
I took time out today to put in my two cents... and you can too...
Immunosuppressive drug coverage must be extended
E-mail your Senators today
Congress is on the verge of reforming our nation's health care system, and now is the time to take action. As you know, maintaining lifetime immunosuppressive drug coverage is one of the biggest challenges kidney transplant recipients face. We can't miss an opportunity to ensure Congress addresses this issue.
Take a moment to send your Senators an e-mail asking them to include the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 565) in whichever health care reform legislation Congress may approve.
Immunosuppressive drugs are vital for surviving a kidney transplant. Under current Medicare law, coverage of immunosuppressive drugs are only guaranteed for 36 months after transplantation. S. 565 will end this 36 month limit.
Kidney transplant patients need vital immunosuppressive drugs for the rest of their lives. Currently, Medicare only covers the cost of these drugs for 36 months. The annual cost of these drugs is $15,000 to $20,000, which is far less than the cost of dialysis ($50,000 to $75,000 per patient, per year) or the cost of a second transplant ($100,000 to $125,000 per transplant).
Immunosuppressive drugs are vital for surviving a kidney transplant. Under current Medicare law, coverage of immunosuppressive drugs are only guaranteed for 36 months after transplantation. S. 565 will end this 36 month limit.
Kidney transplant patients need vital immunosuppressive drugs for the rest of their lives. Currently, Medicare only covers the cost of these drugs for 36 months. The annual cost of these drugs is $15,000 to $20,000, which is far less than the cost of dialysis ($50,000 to $75,000 per patient, per year) or the cost of a second transplant ($100,000 to $125,000 per transplant).
11/7/09
384) November Report
November 7, 2009
Saturday
Home: I had a participant in a training yesterday who started a conversation during a break by saying, "Do you mind if I ask a personal question?". Of course, I seldom mind and my own mind calculated quickly that it had been some time since someone has asked about my kidney, dialysis, or any of those topics that used to come up frequently. "No... I don't mind" I replied.
She continued, asking, "Are you on dialysis?" and I countered, "Not anymore...." to no response but a blank face... so I continued, "I got a kidney in March, so I haven't been on since then". That explanation data entered for her and so she began to ask about dialysis, dialysis centers, and other details of the dialysis experience, explaining that her 38 year old daughter has just had her "kidneys collapse" and has ended up in dialysis. She continued that the daughter has had complications from some exotic genetic disease that docs don't usually know about, so she was treated primarily for being HIV positive and so on and so on..."developing chronic hypertension" and numerous other listed medical conditions. I replied something like, "so, the hypertension impacted her kidney function..." which supported her continuance of ventilating the story. I am thinking all this time that it is sad that people search out others they imagine have some sense of understanding of their crisis and then they open up like a dam long bursting with water's weighty energy when stopped up. Aside from the daughter's debilitating disease and her current needs for medical intervention, and my training participant's consternation about the medical care she is receiving, the nephrologist's lack of building rapport with the patient's mother, and such, it is clear that the woman in front of me wanted some "advice" without really ever coming to an answerable question.
I offerred that it is important for such medically involved dialysis patients to feel a sense of connection with the others and the staff in their dialysis center. They can get excellent information, sounding boards, and patient-to-patient support from other patients and staff in the dialysis center if the dialysis center is an open, collegial-type of facility where patients are encouraged to build supportive relationships, and staff are friendly and encouraging. Based on the woman's response, the center where the daughter is, is not like that at all and the patients are all separated by hospital privacy screens and staff are very business-like. I suggested she google davita and look at their information about finding a good facility, saying that I am not necessarily recommending Davita facilities... but they have a useful website.
Around this time the break was over and all the other participants re-entered for the training and I was left bringing other thoughts to the fore and gently setting this concern and consideration of these kinds of conversations to the rear. I do, however, think it is curious how people search out people they think are in similar situations to begin very intimate discussions with, without knowing really anything more than their hallucintation of the similarity between them and the person they are inquiring with.
Next Tuesday (November 10) Mordechi the Miracle Kidney will be 8 months old... 8 months post transplant and all still continues to go well!
News: I was going to follow up with Dr. Leary about the telangectasia in my gum and had an appointment that I went to and still missed. His office has moved and I couldn't find the new office. I did find out that he CAN zap that spot in my mouth. Still need to get that done sometime. Then onto my dentist to get needed teeth work I've been putting off while I got further into the healing and acceptance of Mordechi.
NOTE: Of recent past I find myself doing much more family sharing with friends on FaceBook and less of the personal reporting here on the blog. For friends from afar who are used to finding details and thoughts about those non-kidney related personal items that used to reside here on this blog, they can now find me on FaceBook.
Saturday
Home: I had a participant in a training yesterday who started a conversation during a break by saying, "Do you mind if I ask a personal question?". Of course, I seldom mind and my own mind calculated quickly that it had been some time since someone has asked about my kidney, dialysis, or any of those topics that used to come up frequently. "No... I don't mind" I replied.
She continued, asking, "Are you on dialysis?" and I countered, "Not anymore...." to no response but a blank face... so I continued, "I got a kidney in March, so I haven't been on since then". That explanation data entered for her and so she began to ask about dialysis, dialysis centers, and other details of the dialysis experience, explaining that her 38 year old daughter has just had her "kidneys collapse" and has ended up in dialysis. She continued that the daughter has had complications from some exotic genetic disease that docs don't usually know about, so she was treated primarily for being HIV positive and so on and so on..."developing chronic hypertension" and numerous other listed medical conditions. I replied something like, "so, the hypertension impacted her kidney function..." which supported her continuance of ventilating the story. I am thinking all this time that it is sad that people search out others they imagine have some sense of understanding of their crisis and then they open up like a dam long bursting with water's weighty energy when stopped up. Aside from the daughter's debilitating disease and her current needs for medical intervention, and my training participant's consternation about the medical care she is receiving, the nephrologist's lack of building rapport with the patient's mother, and such, it is clear that the woman in front of me wanted some "advice" without really ever coming to an answerable question.
I offerred that it is important for such medically involved dialysis patients to feel a sense of connection with the others and the staff in their dialysis center. They can get excellent information, sounding boards, and patient-to-patient support from other patients and staff in the dialysis center if the dialysis center is an open, collegial-type of facility where patients are encouraged to build supportive relationships, and staff are friendly and encouraging. Based on the woman's response, the center where the daughter is, is not like that at all and the patients are all separated by hospital privacy screens and staff are very business-like. I suggested she google davita and look at their information about finding a good facility, saying that I am not necessarily recommending Davita facilities... but they have a useful website.
Around this time the break was over and all the other participants re-entered for the training and I was left bringing other thoughts to the fore and gently setting this concern and consideration of these kinds of conversations to the rear. I do, however, think it is curious how people search out people they think are in similar situations to begin very intimate discussions with, without knowing really anything more than their hallucintation of the similarity between them and the person they are inquiring with.
Next Tuesday (November 10) Mordechi the Miracle Kidney will be 8 months old... 8 months post transplant and all still continues to go well!
News: I was going to follow up with Dr. Leary about the telangectasia in my gum and had an appointment that I went to and still missed. His office has moved and I couldn't find the new office. I did find out that he CAN zap that spot in my mouth. Still need to get that done sometime. Then onto my dentist to get needed teeth work I've been putting off while I got further into the healing and acceptance of Mordechi.
NOTE: Of recent past I find myself doing much more family sharing with friends on FaceBook and less of the personal reporting here on the blog. For friends from afar who are used to finding details and thoughts about those non-kidney related personal items that used to reside here on this blog, they can now find me on FaceBook.
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