Day 7 husband's 2nd ATG cycle

[SherryM]

GOd willing today will be the 4th and last ATG infusion. Jim's been in the hospital for 7 days. Fevers, diahrrea, rigors etc. They're trying to bring down a fever right now; he's had fevers almost every day and shaking. They started the ATG 2 hours ago. I do hope he does well and can come home tomorrow.

I'm really worried for him today. Just needed to share that.
Thanks
SherryM

[Neil Cuadra]

Sherry,

I'm disappointed to hear that Jim is still getting the rigors. After his reactions the first time I had hoped they'd know how to make adjustments to avoid it.

How are Jim's blood counts? What do they say about his liver?

[SherryM]

Hi Neil
Actually he just called and said they had got the fever down and he did not have rigors today or last night....just fever and diahrrea. Today they had already given tylenol before he got the fever (103) so they had to use ice packs and his brother Tom gave him a sponge bath. He did have rigors again since the first day ...day 2 (of ATG) I think.

He tells me his liver enzymes are good. Which blood counts do you mean? Neither he nor his brother are very proactive in getting details. I know poor Jim is totally exhausted....was up all night with fever etc.

SherryM

[Neil Cuadra]

Good news about the liver enzymes.

Jim's doctors are keeping track of his CBCs (complete blood count) results so I asked in case you were following them too. that's one of the ways to gauge recovery from ATG and the benefits of the ATG treatment over time.

How Jim feels day-to-day is a more immediate concern. Getting though the infusions was a challenge. Waiting for improvement, not something that's easy to do patiently, is the next challenge.

[Lisa V]

Sherry, have they tested him for C. difficile? I hate to sound like a broken record, but if he's got diarrhea too, that sounds just like what happened with Ken after they gave him broad spectrum antibiotics. It kills off all of the beneficial gut flora. It's scary and miserable, but very common in hospital settings, so you'd think they'd be on the lookout for those symptoms.

http://en.wikipedia.org/wiki/Clostridium_difficile

Of course it's also possible it is serum sickness, but if he didn't have those symptoms the first time, I'd be suspicious.

[SherryM]

Hi Neil

just spoke with him again and he was too exhausted to even get the copies of bloodwork he's been collecting. He says WBCs are "up", hemoglobin is "up there" (hope you can follow these medical terms), bilirubin and liver enz are "down". The infusion should be finished tonight around 11 or so.

Yes, I remember the long wait after ATG #1; it was 6-8months before hemoglobin started rising and he was transfusion independent for about a year.

I don't really know what to expect this time with the cyclosporine...haven't dealt with that before.

SherryM

[SherryM]

Oh Lisa.....I certainly hope he doesn't have C difficile. I'll ask him if he's been tested for it...I don't know that he would even be aware if he had been. Still has the D tho...so I'll be sure to have him check into it.

I thought serum sickness was something that began a couple of weeks after the treatments?? I looked it up here but couldn't find a real definition. Wouldn't he have a rash too or what? What do they look for in addition to fever?

Thanks for your input...and Neil too of course.
SherryM

[SherryM]

Jim just finished the 4th dose of ATG...YAY! and I guess I lied or someone did....he says he DID have rigors early this AM at 5. Hopefully he will not again tonight. He had them after Day 1, Day 2, and day 3. He's been sweating like crazy and was just going off to sleep...hopefully to come home tomorrow. I'm sure they'll keep him an extra day if he has fever and all. No?
SherryM






"Hi Neil
Actually he just called and said they had got the fever down and he did not have rigors today or last night....just fever and diahrrea."

[Neil Cuadra]

He's been put through the ringer. Getting to go home will be the best medicine of all!

[SherryM]

Jim is on his way home! Had a good night and ready to leave. Thank you all so much!

I'm sure I'll be back with followup questions and cyclosporine questions.

Thank you for this venue to share and learn.
SherryM

[donna j.]

Sherry,

I am so happy for him and you and your family. I followed your posts and was praying all would be good.

Donna

[SherryM]

Thank you Donna!
Wow...Jim got home at 5 (about 6 hrs ago) and he's pretty much flying high from the 100 mg of prednisone this AM. He has a tapering schedule for a month and I don't envy him coming down. I just read thru all his bloodwork while at the hospital and my head is swimming. He's got a spreadsheet worked out for when and what to take over the next month. Seems like evrything has worse side effects to watch for than the other.

Speaking of side effects I had asked Jim and his brother repeatedly about rash. Both of them assured me every day they had seen no rash. Tonight when he took his shirt off I couldn't believe it....not scaly or itchy but huge dark red blotches all over his trunk, butt, upper arms and legs. I asked him when the rash started and he said the day after the first infusion. (duh??) He was told to just put lotion on it.

He absolutely insists on driving to work tomorrow about 1/2 hr. away. Even tho all his meds say not to drive until you're more certain how a med will affect you. I can't do anything about this...I know I have to let alot of stuff go in the next few weeks/months. Especially right now...he is just not thinking clearly and he knows it. I'm not about to initiate an argument with a headstrong guy on all these meds. Am I wrong?

Lisa....his WBC count did indeed spike for a couple of days and (yay) they tested him for c diff right before he left.

Here is a list of his meds:

acyclovir 800mg 2x/day 30 days

aspirin 81 mg daily (discontinue if platelets get lower than something or other)

cyclosporine Gengraf 200mg 2x/day

lisinopril 10mg/day (confused as cyclo insert says it interacts with this)

metoprolol tartrate 25mg 2x day

multivitamin 1/day

prednisone 100mg for 5 days, taper over 30 days

ranitidine 150 2x day ( he doesn't even know why he's on this..I know what it is but also wonder)

Bactrim 800/160 1tab 2x a day on Tuesday and Friday

Bloodwork 2X week, temp 2X daY

I can post today's bloodwork if anyone is interested. Right now I have to give my dtr her meds. Good Times!

SherryM