Had another lot of blood tests done.

[Cazzy41]

Well got called back to the hospital yesterday morning as my transplant coordinator called me. When I was told about the BK virus I was gonna we of my level was 4.8. Now I stopped my Cellcept and was put on to Prednisone 10mg. I have been in them about 3 weeks and got a phone call asking me what my virus load was at when my meds were changed so I said 4.8 only to be told oh it’s now 5.8 we need more bloods ASAP. I feel like I am absolutely full of flu, horrendous sweating anytime of the day but really bad at night. It’s got to the point I have a shower before bed, then need to change my nightwear up to 3 times a night and change all my bedding as well. But even though I am obviously exhibiting these symptoms outward and I am asking why this is happening I am getting no adequate answers or explanations. I’m aching all over and I’m a single mum that gets no help and their answer is “ take it easy” I think I’m going mad really struggling to cope with this now. Oh and I have clinic on 21st of this month.

[smashandgrab]

O so sorry to hear this and I take it the transplant co-ordinator never said if this was a side effect of the BK or just a bug?

My blood test showed my BK was negligible before Christmas but I am back on the 24th to Clinic and I am not well either with sweats, dizzy spells and an ting to sleep all day but not seeming to get any answers.

How are your blood sugars as if high or low can make you sweat profusely and can cause mood swings and depression. There is another person on this blog being treated for BK and they have added another steroid to his meds so maybe your Consultant will discuss this with you. I think you maybe more optimistic after the Clinic appointment.

Is there anyone near who can help you with the kids until things improve?

Do let me know how things go. I can give you my FB contact but I mainly post about dogs and politics and going somewhere sunny for a while...😎🙏

[Cazzy41]

Sugars are spot on. But I am so lethargic. Like you said wanting to sleep all the time. I am getting no answers and this morning I have to go to the GP as think I have another chest infection and I don’t know how they are going to treat it as normally it’s steroids and antibiotics but I am on steroids so don’t know how this is going to work. The kids are okay but it’s simple things I do everyday that seem nothing to me, but they are telling me not to do. I have no appetite, feel constantly drained try my best to eat little and often and I feel like giving up right now( but I won’t). Clinic Monday, but was told yesterday on a phone call the my creatinine is stable so taking that as a good sign.🤷🏼‍♀️

[mdelponte515]

if you stopped cellcept it could be withdrawals from the drug, along with the virus.

[Cazzy41 in reply to mdelponte515]

Nobody ever said that Cellcept could cause withdrawal symptoms so think this needs to be brought up in clinic on Monday. Thank you for pointing that out. Much appreciated 😊

[mdelponte515]

my husband experienced something similar when he had CMV & temporarily had to stop cellcept. I'm not saying that could be the only cause, but it might be a contributor. Your body gets used to the drugs and when you stop, there's a reaction.

Hope you feel better.

[toeragthecat21]

HI HOPE CLINIC WENT WELL...REGARDS CHRIS

[Cazzy41 in reply to toeragthecat21]

I went again today. Now last Wednesday I went to see my doctor and was sent to a winter pressure clinic. Which basically means I was sent to a practice where they never had any background on me or any of my medical notes. I was given Clarithromycin for a chest infection only to find out we are Renal patients should never take this antibiotic. So on my urine screening I had many pluses of protein which is not a good sign. After discussing my results I nearly ended up having a kidney biopsy, it was by sheer luck I mentioned this antibiotic to which my consultant and coordinator went absolutely mad. It seems that just by taking this tablet for 4 days has caused problems. Fingers crossed now I have stopped them the protein should slowly go back to normal. But not only does it cause those problems it also makes your Tacro levels go bloody sky high. So back to clinic again in the morning to check my Tacro levels and urine clearance for the next 3 weeks. I cannot believe the hassle one stupid nurse and a stupid antibiotic can cause. So please to all of you if at any point you are prescribed CLARITHROMYCIN PLEASE PLEASE PLEASE DO NOT TAKE IT AND CONTACT YOUR RENAL TEAM DIRECTLY!!!!!!

[toeragthecat21]

HI THAT INFORMATION MIGHT SAVE LIVES..HOPE ALL GOES OK NOW😊

[Cazzy41 in reply to toeragthecat21]

That’s the reason I posted it hunny. I didn’t know and that makes me think many people on here will have no idea. Just trying to do my bit you know. Next week will let me know if any permanent damage has been done. But thank you so much for asking hunny x