Hold Calls - EMAIL ME

Rudy is feeling really bad - all Hep symptoms (see update below).  The phone keeps ringing and I've muted most of them and am carrying the others with me.  I can't turn them off because I want the lines open for a couple of important calls.

If you want to talk to me, EMAIL ME.  I'll check my email as often as I can.  

I don't want to avoid anyone.  I CAN talk to you - that's no problem - but I just don't want ringing phones to wake Rudy up whenever he's able to rest.

In fact, it would be helpful if people would just do this indefinitely.  

You can also text me or message me on Facebook, but I don't check those messages quite as often.  I'll try to do better.

Hepatitis Symptoms

He's experiencing the full range of hepatitis symptoms and they are just as described to us - like a case of the flu.  This is a flu that could go on and on.  Fevers, sweats, nausea, loss of appetite, aches and pains... he's miserable.  

He didn't sleep last night.  He was too nauseous to take the pain meds.  He took one this morning and has been sleeping some off and on.  He may need to increase his pain meds again just to deal with Hepatitis, but that will have to be discussed with the doctors.  I'm about to start making some calls.

Apr 22 Update - Fever and More

This morning I celebrated Earth Day by carting off a car load of papers to be shredded.   Newnan had a special event going for free paper shredding and electronics recycling.  I had paperwork from way beyond the 7 year tax minimum.  It's gone now!   My sweet parents went with me.  They stay much more on top of things and only had a small bag of papers.  They only went to help me out.  ♥ ♥ ♥

Rudy felt horribly fatigued when I left this morning, but when I returned around lunchtime felt a tiny bit improved.

He went out on our porch for some fresh air and there were bit and pieces of a sofa that we have been trying to get over to the dump.  Foam and fabric was all over thanks to our pack of very mischievous dogs.  Naturally, none of them accepted responsibility.

Earlier in the day, Nancy and Mike had called to see if this was a good day to help cart the sofa away.  Rudy had said no because he felt so bad.  Once he saw the foam all over, he told me to call them back.

Mike helped Nancy and I load everything, then Nancy and I took a truck load of stuff to the landfill.  Our porch no longer looks like it belongs to the Senoia Hillbillies.

When I got back from the landfill, Rudy was feeling a good bit worse...  fatigued, achy, slightly nauseous, and running a fever - around 100.2.

Terri from CTCA had called with the latest Hepatitis blood test.  The C is still dormant, but the B is running wild.  I wish I had been there for that call.

I have read a tiny bit about Hepatitis B and it looks like there's not much to help ease the symptoms.  I found this article which gives 7 tips.  Most of the tips are similar to what someone with the flu might be advised to do.

Every time I read I keep coming across conflicting info about how rare it is for someone to get a Hep virus from a transfusion.  Many stats are incredibly low.  What the heck is going on?  The acute infection comes on after first being exposed, so this is recent.   It pretty much has to be from something medical.  He hasn't exactly been partying these last 6 months.

Here are a few more quick facts from a CDC article -

• Symptoms begin an average of 90 days (range: 60–150 days) after exposure to HBV.  
• Symptoms typically last for several weeks but can persist for up to 6 months.
• For acute infection, no medication is available; treatment is supportive.
• [Acute HBV] will be detected in an infected person’s blood an average of 4 weeks (range: 1–9 weeks) after exposure to the virus. About 1 of 2 patients will no longer be infectious by 7 weeks after onset of symptoms, and all patients who do not remain chronically infected will be HBsAg-negative by 15 weeks after onset of symptoms.

Everything I learn leads to more questions.  I'm tired of learning about medical stuff.  I think I'd rather learn about hang gliding.  I'm afraid of heights, but that would be less scary than all this mess!

Appointment with Hepatologist

We finally have an appointment with a Hepatologist.  It will be a little more than 2 weeks away. They *may* be able to get us in sooner.  If there is a cancellation, they will call us.  The appt is with Dr Divina Bhasin in Atlanta.

Rudy seems a little better today, but he's not wanting me to use positive words to describe how he feels.  :-P   I can say he feels less horrible than yesterday.   He's still super tired.  His only active time today was a brief ride in his hotrod.  When he came in, he crashed in his chair and he's still there sleeping.

Our nightmare began on this date exactly 6 months ago.  We thought he had bronchitis or possibly even walking pneumonia.  I still assumed I was married to a man who was strong as an ox.  It seems like yesterday and then again, it seems a lifetime ago.  Our lives have completely and irreversibly changed.  I am thankful for the knowledge I have now, but I miss the magic of ordinary days.  I will never again take days like that for granted.

On a different note, I'm so glad the sun is shining today.  I'm sick to death of the rain and humidity.  Yesterday when I left the house , my hair looked decent.  Just like Cindy Crawford's hair, only completely different.  :-D  Well, at least it was smooth and relatively frizz-free.  At some point late in the afternoon, I caught sight of myself in the mirror.  I swear, this was my new hairstyle -

I had plans to grow my hair long and then donate it to Locks of Love or some organization for wigs for cancer patients.  Now, I'm picturing some poor soul wearing a wig with my hair in it and how they would feel if they were out somewhere and it frizzed completely out.  Those patients deserve smooth, silky hair.

Symptoms - Hepatitis or Cancer?

Rudy has a number of issues going on and for some of them, we have no idea if it's the cancer, the hepatitis, or maybe even the after effects of chemo or radiation.

First, he still tired.  REALLY tired.  Walking from one part of the house to another requires a rest to recuperate.  He's still pushing himself to do a few things he enjoys.  The most taxing is going for a ride in his hotrod, but that's also the thing that's the most fun.  Other than that, he's either watching TV or playing solitaire with lots of catnaps.  It would be incredibly boring except he's too tired to feel bored.  He's not even wanting to talk on the phone.  This is a tired that is far beyond anything most of us have experienced.

He's running fevers.  We were told that if they ever went above 100.4, we were to call CTCA.  They haven't.  The highest we've seen in the last few days is 99.8.  He keeps breaking into sweats on and off, too.  Fevers are common with hepatitis, so it's probably that.

He's having a bit of joint pain.  Mostly in his neck.  That may be from falling asleep in his chair with his head at an angle.  He uses a heating pad pretty often for that.

He has some knots on the side of his neck. This is not on the side with joint pain.  These are new.  They don't hurt.  They might be swollen lymph nodes.  Is that the cancer?  Is it hepatitis?  Is it some other crazy thing he's been struck with?

With the way his luck is going, I wouldn't be surprised if he contracted leprosy from an armadillo.   I wouldn't even be surprised if he had a kidney stolen by aliens.  

His appetite stinks.  My cooking seems to be getting worse.  Not a good combination.  Rudy is still loving cinnamon rolls, but today, even cinnamon rolls are a challenge.  His appetite perked up briefly a few days ago.  He was almost too tired to lift a fork, so it took him forever to finish, but he was at least enjoying it.  Today, he's just not hungry.  I made a halfway decent meal - pork chops, pinto beans, collards and corn bread.  In the past, that would have made him very happy.  He tried to eat some of it, but only because he felt like he should make an effort since I'd gone to the trouble to make it.  I let him know right quick that I didn't care about that.  I would rather he have the cinnamon rolls and feel happy about it.  After a little while, he did just that.  He should just do anything that makes him happy.

As for me, I'm tired to the bone.  I'm going through another bout of not being able to sleep more than 3 or 4 hours at night.  Then I drag through the day, not able to get much done.  On the days when I can get a nap, I do pretty well.

Today, I tried to take a nap 3 times.  Each time, just as I fell asleep the phone rang.  Every charity on earth has us at the top of their list.  One particularly irksome breast cancer charity continued to try to get money even after I politely explained our situation.  Apparently, they have a plan so that people like me (who are scared to death that bankruptcy could be just around the corner) can give just $15 a month.  Seriously?  They did that to me twice in the last 2 weeks.  I think it's in very poor taste and I took the time to let them know.  On the other hand, the firefighters group that called was very nice.  Unfortunately, we're in no position to help anyone right now.

I don't want to end this post on a bad note.  Despite all these side effects and setbacks and trials, we are able to find things to smile about.  There are still good things in our days.  A good hug is one of the best.  There's nothing like a good hug.

Hepatologist Appointment - Hoops to Jump Thru

It's taking time to get an appointment with a hepatologist.  CTCA is setting everything up.  The hepatologist's office had a VERY lengthy referral form.  That was faxed over to them yesterday.  They required lots of additional records.  That was faxed over, too.  They need a scan.  That can't be faxed.  It has to be mailed.  CTCA is sending that thru expedited mail.  Once the hep. office has everything, hopefully, we'll get an appointment in 1 to 2 weeks - that's the fastest timetable allowed on the referral.

CTCA worked as fast as they could to get
 all the paperwork over to the hepatologists office.

If this doctor were part of CTCA, we probably would have already had our appointment.  They have lots of specialists there, but this is one field they don't have.  In fact, if you are a liver patient who lives in any city in Georgia other than Atlanta or just north of Atlanta, you're out of luck.  Prepare to take your ailing liver on a long haul.

Maybe, by the time Rudy sees this specialist, his acute infection will have subsided.  

Good grief.  Some days I feel like I'm a medical student and let's just say I don't think I'm going to be finishing at the top of the class.   We have so many questions.  Feel free to add to these - 

• If the acute hepatitis goes away (and just becomes antibodies) will he really be able to start Novolumab?  I read just enough online to wonder about that.
• If he can't use Novolumab, what then?
• Hep. is spread thru bodily fluids and blood.  Aside from the obvious precautions, is there anything we need to be cautioned about?
• Are caretaker psychiatric evaluations available at CTCA?  I think I may need one.  Seriously.

Hepatitis

According to Cancer.Org, "Hepatitis is the most common disease transmitted by blood transfusions."  It's rare, but it happens.  Rudy has full blown Hepatitis B, with antibodies of Hep C.  I don't know much about these, but I'm getting a crash course.

One of the screening tests done before starting Novolumab (immunotherapy) is for Hepatitis.  They got the results today and called us with the bad news.

Rudy has had 2 transfusions.  One of them probably had this little surprise.  Terri said this virus was likely contracted during the last 6 months.   Blood banks try very hard to weed out diseases and viruses.  They do a pretty good job, but it's not perfect.  There is about a 3% chance of having a transfusion with something in it.  Rudy, apparently is in the 3%.

Update: I have been worried ever since this diagnosis.  There was no way to know for sure when and where Rudy got this.  I had transfusions back in the 1980's.  Could I have contracted it and passed it along to Rudy?  Had we both been living with it all this time?  If either of us got it before the cancer diagnosis, it seems probable that we both would have it.  After Rudy died, I stuck my head in the sand.  I did not want to be tested until I knew I could handle the news without wanting to throw myself off a bridge.  I finally reached that point.  I decided that if I had it, I was going to learn everything I could about it and share what I learned with others.  I geared myself up and had the blood drawn yesterday.  I got my results today.  I don't have Hepatitis!!!!  Hurray for me.  But, that means it’s pretty certain that Rudy got it from one of his transfusions while he had cancer.  I have many thoughts and feelings about that, but anger is not one of them.  

This explains many of his current symptoms that have been hanging on - loss of appetite, fatigue, nausea.  It can also explain the grayish tint to his skin that I have been seeing for ages.  I thought that was due to his blood count or the cancer or something.

We will be seeing a specialist soon.  CTCA does not have a Hep. specialist, so we'll have to see someone outside the system.  Typically, the body will fight off the active infection and build antibodies.  Rudy is supposed to rest. He's out on the mower now, so he's not exactly adhering to advice.  He's supposed to drink lots of fluids and eat well.  He's good on the fluids, but the loss of appetite is making good nutrition a challenge.  There is also an antiviral drug that is sometimes used.  We'll know more after we see the specialist. We don't have an appointment yet.  CTCA is going to help us set that up.   It looks like immunotherapy is on hold 'til the Hep battle is won.

I was holding on by a thread emotionally before this news.  I even wrote a sad post about how low I was feeling this morning, but I took the post off this afternoon, because I had decided to fight thru and remain positive. Then came the phone call.  So much for staying positive.  After this news, I was stunned.  Now, I am mad and determined.  That feels better than drowning.  I am not mad at CTCA.  It's certainly not their fault. They get their blood from the blood banks, just like every other hospital.  I am not even mad at the blood banks.  I hope it's not a case of negligence. I'd like to think that everyone does the best they can.  I'm just mad, period, with no place to aim it.

God doesn't give us more than we can handle, right?  Well, God really must think Rudy and I are very, very strong.  My prayers lately, have been pitiful little cries for help.  Today, they are more like, "OK, God.  This is just plain crazy and we really need some help! And by the way, I think this is about all we can handle, so I hope there won't be any more crazy surprises."  I generally don't get sassy when I pray, but I feel sure He understands that I'm feeling pretty nuts right now and will forgive me.

My warped sense of humor is still intact.
I saw this when doing a little research and it made me smile.
Smiles are hard to come by.

As Rudy and I slowly lose our minds, I hope you will continue to pray for us.