Who prescribes the CellCept for you? The prescribing physician HAS to make a way for you to be monitored aggressively & appropriately.
Easy for me to say. Is the VA prescribing the CellCept? How do their transplant patients get access to a dr. who is on top of their game with this powerful medication?
Do they do blood tests to follow your progress (is there risk of suppressing white counts?) Do you take any meds to prevent other infections like shingles? since you are immune suppressed you are at increased risk of viruses. I am back on famvir and maybe an antibiotic to prevent pneumonia because I am still a bit immune compromised. My doctor has a nurse who I call and report issues and she consults with my doctor and either one of them will call me back and advise me.
Actually I'm in a kind of strange situation at the VA so I'll try and explain things.
I'm actually have a DX for both MS and Sjogren's Syndrome. Both of which have similar symptom which none of the Nashville VA Neuros know how to treat. As such they are having me see on a fre-base ( The VA pays the bills) a Neuro at the Vanderbilt University MS Clinic.
Because of the dual DX the Vanderbilt Neuro prescribed the CellCept while the VA deals with filling the RX and any other issues that come up ( brace for foot, Gabapentin for tremors, etc. ). Since the Vanderbilt Neuro is fee-based I can only see him when the VA approves visits ( usually 6-7 months in between visits ) and he also has no privileges at the VA. As such I can't go to the Vanderbilt Neuro if I am having some kind of problem.
I do see a Neuro at the VA as well and he deals with treating symptoms and puts in requests for the fee-based visits to the Vanderbilt Neuro. But these are not always approved by the bureaucracy of the VA which means the visits to the Vanderbilt Neuro can sometimes be delayed by 3-4 months until the next time I see the Neuro at the VA.
One other thing about the VA is all doctor visits are scheduled visits (at least 3 months between) and there is no way to see one of your doctors at any other time. If something comes up between visits with your doctors you have to go to the ER of the hospital and see whom ever the ER doctor is that is on duty.
Like with my hearing problems all appointments to see a specialist ( anyone other than your PC) has to be put in for by your PCP and then it is again up to the bureaucracy to determine if you will get an appointment. As such since I am not a transplant patient I do not get to see any doctors at the VA who deal with transplants and know this medication.
Think HMO on steroids. :)
Dennis
Yes they do blood work ( every 6 months) to check cell counts as the CellCept could lower WBC. So far they have been prefect. I guess that is why they haven't put me on anything else to keep me for catching any bugs. The only thing they have said regarding getting sick is if I have a high fever to go directly to the ER do not pass go and collect $200. :)
During the past week I have only had low-grade or no fever so I waited to see my PCP. I even had a low grade fever today ( at least for me as my normal temp is 97 so a 99 is a low grade for me).
The VA also has what they call a Tele-Nurse that I can call but my experience with that is you are lucky if you get called back with 2 days.
Dennis
Sounds really complicated.
Alex
I don't pretend to know a lot but I do know a little and I just have a few comments about your posts. Complicated is right! The VA does wonderful things (you are very similar to my father-has taken CellCept for 15 years) while they are not real good about communication with other facilities. They believe they are elite (and sometimes they might be) but communication is key. The glucose meter is of concern to me. Did they tell you they need to be calibrated every so often? They do get off of BS levels and need to be recalibrated. This is why our hospital won't let patients use their own. I have seen many way off when numbers become wacky (real highs/real lows). Usually when people get the equiptment a small class is manditory to explain the machine. Have you been to any or have they been offered? If you need me to I can find out how often they need to be and get back to you.
Definately monitor your temp often. Listen to your body. Because you are immunosuppressed a slight fever can be a real fever. If you don't feel well there is probab;y something up. This has been our experience with my father over the years. I wish you the best!
The meter I got for the VA doesn't have any calibration for it. The only thing it does have is a control solution to check if the meter is working correctly. If the control solution doesn't test within the given range you get a new meter. I am suppose to test the meter about once a month.
At least my doctors at the VA admit they don't know anything about the CellCept or my Sjogren's and MS.
Dennis
It sounds like a simple machine which is good. Diabetis can be tricky. You have a lot going on-I am sorry you are having to go through all of this. Cellcept is a wonderful drug but with every wonderful drug there are some down sides sometimes. I hope you start seeing the upside very soon! Many thoughts coming to you from Kansas!