I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: donnia on July 03, 2008, 10:49:46 PM
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Okay, the more I read about this... the more scared I get. I was CMV- while my donor was CMV+. I am on Valcyte, but will only take it for 3 months. I have been doing ALOT of reading and from what I have read most people take the Valcyte for 9 months. I have also read that many times when the person stops taking the Valcyte, within a few weeks they usually get some degree of the CMV virus. I have not liked what I have read about this nasty little virus. I hear it can get pretty dang serious.
Anyone have any experiences they can share?????
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Ben there, done that twice. I was CMV - while my donor was CMV+ too. However I was on cytovene and to cut the story short, I developed CMV a few weeks after they had me stop taking it. They did not test for CMV afterwards and I got real sick bad with it and had to be hospitalized and then have a home health nurse for a few weeks for IV treatments. again I was put on Cytovene for a few months. They stopped it again and I developed CMV again. This time it was caught earlier and again treated with the IV and this time was on Cytovene for over a year and haven't had a recurrence so far.
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Jenna and her donor were both found to be CMV negative, but they still gave her 3 months of Valcyte as a precaution.
Here are some related threads:
Transplants and chicken pox, shingles, CMV and herpes http://ihatedialysis.com/forum/index.php?topic=4623.0
Viruses and Infections to ask about as a transplant recipient http://ihatedialysis.com/forum/index.php?topic=8039.0
CMV and My experience and no Holds Barred (May be graphic for some) http://ihatedialysis.com/forum/index.php?topic=6086.0
CMV http://ihatedialysis.com/forum/index.php?topic=4349.0
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I don't know if my donor was positive or negative, but I was positive, having had CMV about 18 years after my first transplant (yes, it was still functioning at the time). I was on antiviral medicine for about six months after that episode, and have not had a repeat. I was on valcyte for three months after my most recent transplant, the six month anniversary is in five days and I have not had any problems at all. In everything else, my team seems to be very careful, so I'm sure they've done their research and found that three months is sufficient. I wouldn't worry too much about the length of time you're on the medicine, but if you're that concerned about it, ask your team's nephrologist, or your coordinator (ours are nurse practitioners), whoever you feel comfortable with.
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My husband was cmv- and his donor cmv+. Our transplant coordinator (also a nurse practitioner) went over the issues with this and the use of Valcyte before he left the hospital after the transplant. He will discontinue the Valcyte at 3 months (currently taking 2x 450 mg/day). As I understand what the NP said, the goal is to get him through the risky period by having him on Valcyte. Then they take him off because Valcyte is the best drug they have to fight a CMV infection later on. I believe she said that if he stayed on the antiviral, it would become less effective as a treatment later on.
I agree with KT0930. Don't be shy about calling your clinic if you have a question.
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Oh, and thanks Karol for posting all of those links. I just read through them. If my husband starts feeling even the least bit like the flu is coming on, I am going to make him call the clinic.
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I had CMV post-transplant, even though I took Valicyte for three months. In my case, CMV manifested as exhaustion and sleepiness, and I was hospitalized for a week and had a month's follow-up of iv drugs at home, during which time I continued working. I did not find the experience any more debilitating than the average 'flu.
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I am thinking about this topic again because my husband is about to go off of Valcyte, which he has been taking for 90 days post-transplant. He was CMV negative, but his donor is CMV positive. He also had monoclonal antibody therapy. I believe that both of these factors put him into a high risk group for CMV infection.
I have been reading on the web (links below) and thought I would share some of what I gleaned out of a few different articles:
- greatest risks are for donor +, recipient - (D+/R-) before transplant
- patients receiving antilymphocyte antibody therapy (polyclonal, monoclonal) are also also considered high risk
- the peak period for infection to develop is within first 6 months with or without prophylaxis (drug therapy - e.g. Valcyte)
- in the first study, they state "In a D+/R- setting, prophylaxis is recommended with oral valganciclovir (Valcyte) 900 mg/day."
- in the second study, they state "In conclusion, ganciclovir prophylaxis diminished and delayed the onset of CMV infection but did not totally prevent it from occurring in D+/R- renal transplant recipients. Clinicians should be vigilant to the possibility of CMV infection in both seronegative and seropositive recipients, especially after anti-rejection therapy."
http://www.revistanefrologia.com/fileingles.asp?ID=4500
http://www3.interscience.wiley.com/journal/118576012/abstract?CRETRY=1&SRETRY=0
I also found this information on the signs and symptoms of CMV infection in transplant recipients:
Signs and Symptoms of Cytomegalovirus Disease in Kidney Transplant Recipients
Transplantation Proceedings. 2005. Volume 37 , Issue 7 , Pages 3056 – 3058 (abstract-only)
F . Pour-Reza-Gholi , A . Labibi , F . Farrokhi , M . Nafar , A . Firouzan, B . Einollahi
Purpose
To investigate the range of clinical presentations of cytomegalovirus (CMV) disease in kidney transplant recipients.
Materials and methods
We retrospectively reviewed the records of hundred kidney recipients who developed CMV disease between 1984 and December 2002 for demographic characteristics, laboratory findings, and presenting signs and symptoms.
Results
The most common presentations were elevated serum creatinine in 74 patients, fever in 71, thrombocytopenia in 43, nausea in 32, vomiting in 25, elevated alkaline phosphatase in 24, leukocytosis in 22, and leukopenia in 21. Tissue involvement was relatively rare, but six patients had pneumonia, two had conjunctivitis, and one had vascular dermatitis. Four percent of the patients had received intravenous ganciclovir prophylaxis, and 7% had received oral ganciclovir prophylaxis. Fever was associated with number of hospitalizations (P = .006), elevated creatinine (P = .006), nausea (P = .017), vomiting (P = .031), and previous posttransplantation infections (P < .001). All the patients with conjunctivitis, pneumonia, pulmonary symptoms, and abnormal heart sounds and most of those with arthralgia, nausea, and vomiting were febrile during their CMV disease course.
Conclusion
Our findings showed that leukocytosis should be considered as much as leukopenia when CMV disease is suspected. CMV-induced pneumonia is not common in renal transplant recipients compared to other organ transplant recipients. CMV invasion to other tissues is also rare. Finally, fever is a common symptom and important in assessing the severity and prognosis of the disease.
http://linkinghub.elsevier.com/retrieve/pii/S0041134505007955
leucocytosis = elevated white blood cell count; leucopenia = drop in white blood cell count; thrombocytopenia = not enough platelets
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I also had valcyte after the transplant, however a little over a year after getting the transplant, I got cmv. Initially I was somewhat flu-like:
- Extremely tired
- Kept having a low grade fever
- Chest pain
- Shortness of breath
Some bright Drs. told me I had acid reflux, prescribed reflux meds.... they were sorely wrong. Then one day, I felt as if all my life was leaving me. It was a scary time. CMV took out my liver function and attacked my pancreas. My transplanted kidney stopped working and I had to go back on hemo. I had to do home IV treatments and once the cmv was gone my liver and pancreas returned to normal function. A few months into hemo, the kidney woke up and worked again. The cmv damaged nerves endings in the kidney. Anyways, the kidney held on for 5 more years. Tomorrow 10/2 I will have a pd cath put in.
On another note, a friend of mines in MD had similar symptoms and his drs. immediately tested and treated the cmv before it did a lot of damage to his body. Two different cases, one caught very early and one late. Today, my friend is doing very well.
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can it be detected through bloodwork? im almost 6mos out now you have me worried
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my favorite place to find out about lab tests:
http://labtestsonline.org/understanding/analytes/cmv/test.html
Seems like most of the IHD folks who had problems started out with flu-like symptoms.
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can it be detected through bloodwork? im almost 6mos out now you have me worried
Hi chris, mines was found out by doing a blood culture. Don't worry yourself about this, its a positive thing that you know of others experiences and kinda know what symptoms to look out for.
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thanks for the response.......i feel better about now......chris
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Here's some info on CMV-IVIG treatment for protection against CMV infections:
"Cytomegalovirus immune globulin intravenous (CMV-IVIG) is derived from pooled adult human plasma selected for high titers of antibody for cytomegalovirus (CMV). CMV-IVIG is used to provide passive immunity to CMV in certain individuals at risk for CMV infection. CMV can cause problems for individuals with immunocompromised immune systems. CMV can cause increased bacterial and fungal infections that may be associated with an increased risk of rejection of a transplanted organ. CMV may contribute to morbidity and mortality in organ transplant recipients. CMV is not usually harmful to individuals with functional immune systems."
http://www.bcbst.com/mpmanual/!SSL!/WebHelp/Cytomegalovirus_Immune_Globulin_Intravenous_Human_CMV-IVIG.htm
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This site gives considerable information on CMV IVIG including dosing:
http://www.rxlist.com/cytogam-drug.htm
I also found this article at: http://www.cecentral.com/activity/894
Luciano Potena, MD, PhD, Clinical and Translational Research, Heart Transplant/Heart Failure Program, Cardiovascular Department, University of Bologna
"Cytomegalovirus disease (CMV) adversely affects short and long term outcomes following transplantation of allogeneic kidneys, hearts, lungs and livers. Disease prevention strategies, including prophylactic treatment with gancyclovir and related antiviral agents, are routinely implemented in seronegative recipients of organs from seropositive donors (D+/R-). CMV hyperimmune globulin (CMV-IVIg, CytoGam), containing pooled high titer anti-CMV IgG antibodies, is approved for prophylaxis of CMV disease in D+/R- solid organ transplant patients. While the incidence of primary infection is not significantly affected by treatment with CMV-IVIg, the severity of disease is diminished. The administration of CMV-IVIg has been associated with improved outcomes in lung, heart, heart-lung, and liver transplantation. Combination of CMV-IVIg with gancyclovir may enhance the effectiveness of both agents. Multiple lines of evidence support the conclusion that CMV-IVIg has immunomodulatory properties. CMV-IVIg may reduce the titer of anti-HLA antibodies in sensitized patients. Indeed, one study demonstrated a 5-32% reduction in PRA status following four weeks of treatment with CMV-IVIg. Additional evidence from the same study suggested that cytotoxic T cell alloreactivity and the response of T cells in the mixed lymphocyte reaction (MLR) are downregulated in response to CMV-IVIg treatment. Several studies document the role of CMV-IVIg in modulating the direct and indirect effects of CMV infection. In liver transplant patients, the results of one early study suggested a significant survival advantage following treatment with CMV-IVIg. More recently, a meta-analysis of studies conducted in all solid organ transplant recipients concluded that CMV-IVIg treatment is associated with reduced incidence of CMV disease, improved total survival, and reduced incidence of CMV related death. Taken together, the evidence suggests that the use of CMV-IVIg in transplant recipients at high risk for infection and disease addresses both the direct and indirect effects of CMV. A portion of these effects is likely due to the immunomodulatory properties of the hyperimmune globulin."
gancyclovir = the injectable version of Valcyte-like drug
Note: I can't find a pub date for the information posted above, but it appears to be associated with a continuing education site maintained by the University of Kentucky.