2.12.08

Random stats:
I’ve been getting questions about prognosis. I do not know. All I do know are these random pieces of info, you can do with it what you will...

• HS responds to steroid treatment. He responds, but only when it’s a very high dose. So it could be argued either way whether he is ‘responding’ or not.
• WG only responds to a combination of steroids and chemo.
• 1/3 of all WG tests come back false negative
• If he goes on the chemo, once he’s in remission, we have to watch him for two years for bladder cancer or leukemia.
• There is a 50-50% chance that he will get this back after it goes into remission.
  We wait for 3-20 years. If he makes it the 20 years then he is in the 50% that most likely won’t get it back. Anytime between 3 and 20 years it can come back and if it does he’d need the chemo again...and we’d wait the 2 years to see if it causes cancer, ...then start the 3-20 year wait again. This could go on for the rest of our lives.
  
  But let’s just take it a day at a time shall we?
  Let’s do today’s post...
  
  Well there’s the old news of yesterday’s events that I thought I’d be posting about today
  ...then there’s the new news of today’s unexpected events.
  
  For those who prefer the shorter version...

Old news: (yesterday, Mon)

• Saw the nephrologist. The urine work up he did for blood and protein in the urine was worse than it was two days ago. He does not know what kind of vasculitis John has.
• Said he did not want to do the biopsy with chemo present so he negotiated with the other doc that the biopsy could be done on Thurs if chemo didn’t start until Fri.
• Gave us a long list of what can go wrong with a biopsy and also why the results may be inaccurate for a list of reasons. This discouraged both of us but John was feeling pretty well so we went home and thought that would be that until Wed’s appt where he would get the prescription and instructions for the oral chemo that he would not start until Fri after Thursday’s biopsy.
  
  New news: (today, Tues)
  
• John has been up all night with severe pain, nausea, vomiting and diarrhea with a lot of bleeding. His vasculitis has stated a whole new third wave.
• John is being admitted into the hospital. He cannot take his steroids or pain meds orally b/c of the vomiting so it needs to be by I-V.
• Due to the pending ice storm we are being admitted into the lesser of the two desirable hospitals, so the doc can have easier access to John while he is admitted.
  
  Ok, for those who prefer detail...
  Old news: (yesterday, Mon)

We thought we were waiting for a date for the biopsy but apparently you have to see he nephrologist (kidney specialist) first. They called and said to come in at 1:30. (This was yesterday, Mon). We saw him and he explained about the biopsy, the procedure, and all the possible complications. That was a bit too much info and full of doom and gloom. He didn't want John on the chemo when he took the samples b/c he stated that it could hinder the accuracy of the results. He contacted the doc who ordered the chemo and they negotiated that the biopsy would be Thurs and John would not start chemo until Fri.

The biopsy itself may be inconclusive b/c of John's past kidney disease, b/c he's been on the steroids for a month, and (the new reason I just learned today) if it is Wegener's then apparently only random pieces of the kidney will show the disease. If you happen to take a sample (they would take three) from one cm to the left, or too high, or whatever, it will look like normal tissue and there is no way to know which parts will show and which won't so it's like shooting in the dark. Since there are already so many reasons that the biopsy may come back inconclusive, he didn't want to add another possible reason (chemo) to the list. He gave us the appt for Thursday and we went home. John was feeling relatively ok (by that I menan he was walking like a 60 year old as opposed to the 90 year old that he's been lately and his pain was relatively under control).

New news: (today, Tues)
While I was up most of the night taking care of a vomiting, feverish Mary, John was up vomiting and feverish with diarrhea with blood. Around dawn he told me that there was more blood than stool, ...almost completely blood, and he was still vomiting. I called the doc and he said to bring John in immediately. Mom stayed home with Mary, my nephew agreed to pick up the boys from school, and off we went. We are here now, he is sleeping, finally. They are doing the blood and urine work ups here at the doc’s office b/c if it was done at the hospital the results would take even longer. So we are waiting and after that they are admitting him into a private room b/c he is contagious (he probably caught what Mary has despite our best efforts at home for that not to happen) and b/c of his compromised immune system. He cannot have visitors in the hospital b/c of those same reasons.

The doc said that more than likely he has what Mary has and what would normally be a nasty flu is now much more serious b/c it’s on top of his underlying condition. His immune system is weak so he’s not in the best shape to fight this off. On top of that, the parts of his immune system that do work are the parts that are attacking his blood vessels and kidneys so as he gets sicker, the immune system ‘turns on’ to fight the flu, but instead fights his organs, thus making him sicker and even less able to fight the flu. It’s a terrible cycle.

B/c of the vomiting he cannot take his steroids, which helps to control the vasculitis and swelling and pain. He cannot take his pain meds orally either. In the hospital they will put him on IV steroids, pain meds, fluids and antibiotics. That should help. The next question becomes whether or not to go ahead with the biopsy on Thursday and whether or not to go ahead with the chemo on Fri, ...or even do the chemo earlier since this seems so aggressive.

We are in the hospital now,...I’ve been blogging throughout the day as I wait and he sleeps. I can’t get a wireless connection in this hospital to post this though so it will have to wait until I get home. He has been admitted and they are starting the IVs. Here’s what’s interesting, the nephrologist that we saw yesterday’s partner just came in to do a consult. He said that they may or may not be able to do the biopsy on Thurs, depending on how sick John still is. He went on to say that the chemo would not impact the reading of the biopsy one bit. When I pointed out that that’s not what his partner said he got all puffy chested and said, ‘I’m not going to dispute my colleague’. Whatever. I said ‘I’m not trying to say one’s right and one’s wrong I’m just pointing out that I was receiving conflicting information and you all need to get on the same page before a treatment plan is established’.
Geesh.

Question of the day:
Why can’t this hospital provide wireless internet access to patients? Geesh again.

It is now 10:30 pm. We went to the doc at 11:30am. Very long day. At the end it was just 5-6 hours of inept nurses and errors with medications and on and on. Ultimately I had to call the on-call doc and have her come to John's room to fix the mess (aka: yell at people). So, at 8:15 pm John got all the meds he was supposed to get at 2pm and he is now asleep. I am home with the sleeping (vomiting) Mary and (coughing) boys and tomorrow will start another day.
Thank you to everyone for continued prayers. It just seems like there are so many unanswered questions or differing opinions, as well as the lightening fast way John can be relatively ok one hour and a complete pain-wracked mess the next...it's all rather unnerving. I am exhausted and need to try and get some sleep. I will keep you posted as I am able.

k