This morning Joey was sprung from hospital and we are back in PR. He will need to go into the Powell River hospital twice a day for his CMV meds for the first bit, then once a day, and after that we await further instructions. No home IV; the medication he’s on is apparently pretty strong and scary, so it has to be given in hospital instead. Turns out that the whole treatment is 3 ½ months. Yikes.
All is not settled with his liver. One of his enzymes is still very high, but the docs couldn’t see anything on the ultrasound yesterday, so home he came. He’s still a little yellowish, but not nearly as bad as he was before. They aren’t really sure what’s going on with the liver if there aren’t any stones in there: could be CMV related hepatitis (but you can’t diagnose that without a biopsy, which the GI wasn’t keen to do at this point), or it could just be regular old CF related liver disease. Fun, fun.
In spite of all of this, he is in good spirits and is really excited to be out of hospital. So excited that this morning he was re-programming his IV pump to deliver the cytotoxic CMV medication at a faster rate so that he could try and catch an earlier ferry home. Sometimes I seriously do not know what to do with him. We’ll see if he can actually follow the advice to “take it easy” at the golf tournament this weekend.
Outlook not good, but at least he’s feeling better.
K & J
Apparently what CMV means is 3 months of treatment. The doctors are hoping to be able to arrange for Joey to go home on the home IV program, but this requires training and we’re not sure when that will take place.
His liver enzymes are also still high and this morning he woke up with a cold, which also throws a wrench in things. So we’re waiting on more results before we have an idea of what is going to happen. Surprise, surprise.
So who knows? Maybe we’ll be able to make it home for the tournie this weekend, maybe not. If not, we’re expecting a full report of all of the fun that was had and all of the funds that were raised in our absence.
In case you didn’t notice, the two salient points in that sentence were: have fun, spend money. *Sponsored by Visa.
Kirstin and Joey
The results are in: it’s CMV. Now what this means, we’re not totally sure. Joey had another PICC line inserted today to get his antiviral medication through. Hopefully we’ll be able to find out more about the treatment tomorrow.
Not too much to report today. Yesterday Joey was tired from his busy day on Saturday; today his energy level plateaued to something more normal. No more results from the bronch yet; hopefully we’ll hear something tomorrow.
His breathing tests for the last two days have been worse than on Saturday, but he is much less yellow today. He had an X-Ray today that looked just as bad as the one last week. Bummer.
More when we know something.
Today was soooo much better. Not perfect, but way better. His fever is down and his stomach is less swollen. He still looks like a banana, but his eyes are less teen-wolfish. His liver enzymes are slightly less elevated (although they are still very high).
We went for a couple of walks this afternoon (yesterday he was having a hard time even going to the bathroom because it would set off the chills). His FEV 1 readings (daily breathing test) are almost up to normal again and he is much less sleepy, although I’m sure he’ll be tuckered out tonight.
So whatever they are doing is working, I hope. Whether that’s the CMV medication, the restarted anti-rejection medication, or the stint that they inserted into his bile duct for drainage I do not know at this point. Hopefully we have more answers by Tuesday.
The bronch came and went without any punctured lungs. Yeah! Now we are crossing our fingers and hoping that Joey’s cepacia didn’t get stirred up and brought down into his lungs by the scope. Not even going to go there until (and if) this becomes a concern.
Preliminary findings lead the docs to believe that Joey has developed CMV, but conclusive results won’t be in until next week after all of the cultures have been given a chance to grow. CMV (Cytomegalovirus) is a part of the herpes virus family. It is not usually harmful to people with healthy immune systems, but it can cause problems for transplant recipients. So the plan for the weekend is to presume that it is CMV and treat Joey for that, with the option to revise the plan next week after all of the results are in.
He also had another ERCP today where a stint was inserted into his liver to help with drainage.
He was restarted on the anti-rejection drug that he was taken off of for a couple of days as well. I am happy about this.
Kidneys look good.
DIOS is still present, but giving him less pain today.
Lucky for us, Ed and Debbie Mullin know how to run a golf tournament. So it looks like they’re going to be holding down the fort while we’re away. Anybody who needs to get in contact with them can email us at firstname.lastname@example.org and we’ll pass along their contact info.
We are very, very lucky to have such supportive friends and family. Thank you to everyone who’s rooting for Joey.
Well, not quite sure how to begin, so here it goes.
On Saturday morning Joey was admitted to hospital in Powell River for problems with his liver (his liver was producing gallstones that had plugged up his bile duct). The procedure to remove these stones is called an ERCP, which they don’t do in Powell River, so he had to be air ambulanced down to Vancouver.
He was unable to get the procedure until Tuesday morning due to staffing issues (they don’t staff enough to do ERCPs on the weekend and on Monday he didn’t get done either. Don’t ask me why. Not too impressed about this. Write letters to your politicians about health care cutbacks).
Usually he bounces back after ERCPs. Not so much this time (his first post-transplant ERCP). Then he started having kidney problems, which thankfully seem to be resolving themselves. Let’s hope that it keeps going in this direction.
Now for the bad news:
-He had another DIOS flare up as a result of all of the painkillers and not being able to eat or drink for three days prior to his ERCP. Still trying to deal with this.
-Worse: for the past two days he has been having problems with his lungs. The doctors aren’t sure whether it is rejection (they had to hold one of his anti-rejection drugs for two and a half days to help increase the kidney function. This particular anti-rejection drug is really hard on the kidneys), infection, or fluid on the lungs from his kidneys not functioning properly. So to summarize, it’s either: rejection, infection, or fluid, but they’re not sure which.
Tomorrow morning they are going to do a biopsy of his lungs (bronchoscopy) to help determine what the problem is. We will likely not get any results until early next week.
So, there you have it. Things are not going well right now. Hopefully stuff gets sorted out soon.
Oh yeah, anyone know how to run a golf tournament? It’s happening in 8 days in Powell River.