So I have zero faith in my transplant team.So like i said after ending up in hospital with Cmv levels of 200000 very very sick for 10days got out finally at level of 10000 then bloodwork a week later 5600.I was on 450mg valganclovir BID .Then next bloodwork jumped levels to 11000.Had a resistance test sent off and then bloodwork done 2weeks cmv levels jumped tp 22000.They doubled my dose to really high if Valganclovir to 900BID.Went from feeling energetic and well to absolute shit, leukocytes dropped too and my lymphocyes dropped really low too.I know from side effects from high dose Valganclovir, as symptoms of Cmv were very different in April then what experiencing now.I did alot of research and asked to be on new drug maribavir,but they instead told me to stop the sulfatrim which i had been on for along time with no issues (they had stopped it in jan to get my higher then level lymphocytes up but didnt then started again when i was in hospital in april as lungs were effected.)Keep up with the valganclover till resistance test comes back and new bloodwork.Well Cmv level jumped to 760000! and resistance to the valganclovir.Well duh doesnt take a freaking genius to see that the valganclover not working as lowest level was 5600 right out of hospital on that drug.So instead of being proactive and getting me on the Maribavir no lets keep giving you toxic doses of valganclovir.They did the same thing to me with the tacro.
So pissed: So I have zero faith in my... - Kidney Transplant
So pissed
I’m truly sorry you’re experiencing all of this.
First, how are you actually feeling? With CMV data as high as yours is, although yours has been fluctuating, are you experiencing a lot of CMV symptoms (temperature, sore throat, headaches, etc)?
Second, how is your white blood cell count holding up?
And finally, how is your kidney doing?
Have you requested an additional appointment to speak with your medical team specifically about your concerns, i.e., you set the appointment and the agenda, If so, have you approached the hospital administrator who oversees all transplants to share your concerns? Another option might be requesting a patient advocate to attend all appointments with you. It just sounds like better communication may be needed for all parties involved. It’s hard to advocate for yourself when you don’t feel well…
I just had a conversation with my transplant nephrologist about a slight increase in my CMV data from labs last week. I specifically asked her to help me understand her treatment approach etc. I shared my concerns about my CMV data with her to be sure she understands them. I now have a much better understanding what she’s doing and why.
I find the stress related to dealing with all of this to be tiring. It seems to be unending. Fortunately my CMV is mild. They run labs on me weekly. My highest CMV data was only 8350. And I’ve experienced very few CMV symptoms. However, after 4 weeks with CMV data <35 it was up to 84 last Wednesday. It literally exploded from not detected to 8350 over 2 weeks when I initially tested positive. Thus my concern seeing the data up to 84 this past Wednesday. I don’t want to see it explode again!
However, when my CMV initially exploded, I had very low white blood cell count (1.89). Last week Wednesday my WBC count was just below normal at 3.95 (normal 4.0-11.0). This is the first week my WBC count has been this high since last February. And, it is rising now without Neupogen injections. So, hopefully, I have enough WBC now to fight this CMV. Plus I was CMV negative pre-transplant. Now that my body has had one go around with CMV, my body should recognize it… Well, this is my hope anyway. But we’ll know more with labs this week Wednesday.
I’m very glad my transplant nephrologist runs labs weekly to keep a close eye on all of this.
You are definitely in my thoughts.
Jayhawker
My lymphocytes have always been on the low side even prior to transplant.My leukocytes though never an issue until the sick bout of CMV in April, they were low then rose fell slightly at the 11000 cmv level,then weirdly rose again at 22000 level,at which point was put on the 1800mg per day of the valganclovir and cmv level have jumped to 76000 and leukocytes and lymphocytes have crashed.Because of side effects of valganclovir and Cmv symtoms so much alike whose to say what is causing my sysyems.Tiredness has definitely increased.Thankfully though my creatine with last bloodwork 118 lower with cmv lever at 76000,than the previous bloodwork 2 weeks ago ,at the 22000,my creatinine was 136.
Further to note my kidney wasnt a 100 kidney but a 60% donor one and i had no idea it was cmv positive when i was neg putting me in the highest risk catagory ,or the implications of that.That's on me for not asking more questions proir but you think the transplant team kniw what they are doing but big mistake in assuming that.
I don't need an advocate, I've done all of it myself so many times in this last years I am mentally exhausted from it. That is the worst from fighting to get right treatments,right doses, right meds especially during my hospital stays ,I want to scream at them read my fng records why do I have to beg and fight and plead for the right care and treatnent.My main contact doctor should have retired but so short on nephrologists he stays on.The team cgecks my bloodwork not right away but i get the fesults on my app and they typically do t call me with info or changes till close to two weeks later which at that point im due for new bloodwork and now different results so then behind the eight ball.The mental exhaustion is wearing me down,waking me up at night,depressing me.I just want to live and not be worried every freaking day about this that or the other thing.Like i said before im a contestant in the squid games.
Yes, I may have mentioned this already but I, too, was CMV- pre-transplant with a CMV+ donor kidney. People in this group are extremely high risk for CMV post-transplant. Plus they typically get a severe initial bout with CMV. My nephrologist told me when we talked in my last appointment that this group is also very high risk for recurrent CMV.
I monitor my data religiously. If I see something like the increase from <35 cmv to 84 cmv in a week like I did this past week, I call the transplant center that day to see if I should be concerned. Sometimes no concern needed; other times they change medication dosage or hold a medication for a while.
I did mention when visiting with my nephrologist last week that I probably should have waited for a cmv- donor kidney. However, given that 80-85 percent of the population is CMV+, I’d have been waiting a long time. I just turned 70 on Aug 3rd. Frankly, adding another 3 or more years to my time on the list wouldn’t be optimal either as I’m not getting any younger.
You and I are in a very small group of transplant recipients who were CMV- pre-transplant. We’re the group that is high risk for CMV post-transplant and being quite sick when we get it. As my nephrologist told me, CMV is treatable so nephrologists typically recommend that CMV- recipients move forward with the transplant from a CMV+ donor. The transplant is still the better treatment for stage V.
So, I watch my data religiously. I am in touch with my transplant team after each lab. We’re working together on this situation. I’m trying to remain patient and manage my stress level. I’m doing everything I can even as I know that much of this is out of my control.
I’ll be 9 months post-transplant on Aug 17th. IF my WBC count will improve a little more without Neupogen that will be a great sign! Meanwhile they’ll continue to tinker with my medication dosing to find the best dosing and medication combination for me. It’s a process and just takes some time.
Jayhawker
Another thing i was going to mention, being valganclovir resistant and me wanting maribivir doesnt look too promising even though so much better as cost of 8 week course valganclovir 974.00. Maribivir 68000.00! This new drug why they bothered creating it if it is so expensive. Oh yeah only the rich get the best treatments.
If you have legitimate reason why you shouldn't be treated with valganclovir (proven resistance to it), your insurance company should cover for alternative med regardless it's retail price.
Agreed, my insurance wouldn’t cover home injections for Neupogen but would cover home injections for Nivestym. My nephrologist was fine with Nivestym.
One of the nurses actually told me late last week that they were pretty impressed with how I got that set into place for myself. It’s really just taking time to work with your insurance company. While they’re pretty good with that at the transplant center, they won’t know my policy in detail… BUT, as the policy holder, I can certainly come to know it well.
Just as transplant management is complex, so is medical insurance. I’d rather have my transplant team focused on my follow-up care. I can figure the insurance out and then forward them what I’ve learned.
Jayhawker
I am so sorry to hear you are going through this. A transplant is supposed to be a miracle gift of life, but instead you are really just trading one illness (being on dialysis) for another (living with a transplant.). A transplant is just a treatment, not a cure. The doctors never ever talk about how hard it might be for you post transplant. After about three weeks - I was going though a really hard time on tacrolimus and was eventually changed to cyclosporine - I told my transplant coordinator that I regretted getting a transplant. I felt sick and dizzy and sedated all the time. At least on dialysis I had good days, sometimes, in between. She said I’ve actually heard that from quite a few patients over the years. No one talks about that!
Yes they really dont tell you all the problems,they make it seem like you get kidney and you ditty bop down the road and they definitely didnt tell me the donor kidney was cmv positive and me being negative and 61 years that i woukd be at such a high risk for it and how awful it woukd be to get it and mortality rate,tgat what realky pisses me off.
It is just odd they told me about the kidney and I being a “mismatch:” for CMV and EBV virus right up front. Meaning the kidney donor had it and I didn’t. They may not had told me on the phone when they offered it to me but the transplant surgeon definitely told me about two weeks later in the hospital.
Send them written complains with copy to the hospital President. Transplant and dialysis are a very profitable business for hospitals and doctors. They do not tell you the reality that good TX results are a lottery. Due to medical errors and negligence of my surgery and transplant team, my first year post transplant was a hell. I had to threat them with legal action, bad publicity and complain in written to an authority at the hospital in order to have better care. They immediately changed the TX coordinator and doctors put more attention in my case. Still in process of recovery.
I literally could write a book on tge mismanagement and screws up from day 1 of transplant.I have written to everyone and their dog each time and gets tge usual blah blah lip service.
