We may have figured it out!

Ron has been plagued with several odd conditions: night sweats, weight loss, fever, over all weakness and fatigued.

We've been told the problems are side effects from the anti-rejection drug Rapamune; and we're living with that explanation.

We spent so much time (years) dealing with the Hep C, ESLD (end stage liver disease); we are ready to get on with our life.  We want normal and I'm going to do all I can to make that happen.

So we're spending a week on Tybee Island (off the coast of GA.) very soon.  We can't wait.  This time last year, we thought it could be our last visit together; and now, with a new liver, 5 months post transplant, we'll spend another summer at the beach. 

There's a gorgeous sunset every night - I have our quilt and our favorite spot - and we'll sit and watch those sunsets together.

Cervical Injections and Fevers

CERVICAL INJECTION

Ron has had problems with his neck and shoulders over numerous months; after a visit to his bone and joint physician, they decided to try cervical injections (makes me kinda' sick thinking about it). 

A couple of weeks ago (after wonderful mind altering drugs) Ron received cervical injections (eeeehhhh); he spent the day completely oblivious to the world - and his blood sugar went totally out of control - over 500.  The following day was no different - sleeping and high blood sugar.  Finally on the second day after surgery he felt a little more like himself.

A follow-up visit (which was a waste of co-pay) the doctor decided Ron wasn't a candidate for the additional two injections (we had already decided Ron wasn't having any more injections) due to high blood sugar (duh).

FEVER

But the craziest thing has been happening to Ron over the past month - fevers - not everyday or every other day - low grade - and over 101.  The doctors aren't sure what is happening. Ron has an appointment to see a doctor in the transplant clinic tomorrow.

I'm not a doctor - but I'm wondering if the Hep C has begun attacking the new liver and the body is trying to fight the infection.

I'll update after the appointment tomorrow.

Negative

Caroline called today (transplant coordinator) to say that Ron's blood work came back normal - NO CMV!  That's great!  The ulcer cultures are still out - but she suspects they will come back normal as well.

She is concerned about Ron not feeling well - and his extreme weight loss.  The clinic has a meeting every Wednesday to go over patients considered for transplant, and patients with complications - she requested Ron's name be submitted for discussion - so the doctors can put their heads together - to see if they can come up with what might be going on with Ron.

Caroline said she would call us tomorrow with any news.

Hmmmm.....still don't know for sure

Ron had an appointment with the transplant team today; he's been feeling, weak, fatigued and sick to his stomach.  He has ulcers in his mouth - making it very difficult to eat, and he's lost 13lbs in 2 weeks.

We have 'transplant' friends, Jerry and Chandra (Jerry received his new liver 5 weeks ago) and Jerry is in the hospital in Cincinnati - with blood clots and being tested for the CMV virus. (Jerry's a little better this evening and hopefully they'll be going home Monday). 

I never heard of the CMV virus until Chandra mentioned it yesterday.  So of course, I Googled it...........

When Ron went to the clinic today - I asked that he be tested for the CMV virus.  So what is CMV? Caroline at the transplant clinic explained it this way:  the CMV virus is  in the Herpes virus family; 80% of the population have been exposed to the virus.   Ron was tested prior to transplant and he was one of the 20% of the population which never has been exposed. But word came today, the donor had been........meaning once the new liver was transplanted, the virus was introduced.

Healthy individuals exposed to the CMV virus usually aren't  affected at all, but someone with a compromised immune system (transplant patients taking anti-rejection drugs) - well, it can be serious. 

Post transplant the patient is given a medication, Valcyte,  for the first 6 months, which usually prevents the CMV virus.  Ron was tested for the CMV virus today - we'll hear something first of the week.

In the meantime, Ron's  back on Valcyte for 3 months.  His liver enzymes look great.  His kidney function is high - meaning he's dehydrated.....we're upping his fluid intake to 2-2.5 ltrs daily.  Because of the ulcers in his mouth (unsure if it's a side effect from the Rapamune or caused by the CMV virus), a culture was taken, and he's 'swishing' with an anti-fungal rinse.  His Rappamune levels are high - so they are lowering the dose from 5 a day to 4 daily.

Caroline will call us first of the week.

Fever anyone?

We're not sure what's going on with Ron.  It began early Sunday morning with a fever of 102.7 - sick to his stomach - couldn't keep anything down.   We called his transplant coordinator, who didn't seem concerned, I'm guessing because Ron's blood work looked good on Friday.

Sunday morning after a couple of doses of Tylenol his temp was down to 99.0.  Ron slept all day - wouldn't eat a thing. 

Monday he still was running a low grade fever and sick to his stomach.  Monday evening he began to feel a little better and had a bite to eat. 

This morning he had breakfast and went to work - sometime in the afternoon he began feeling weak, also complaining of a strange electrical surge going on in his eyes.  By the time he arrived home this afternoon he was tired and weak AND still running a fever 100.5.  Ron was able to eat dinner.

He's calling the transplant clinic tomorrow to see if he can get in to see them Thursday when he goes in for his weekly blood work.

I know there are signs of organ rejection - I feel like he either has food poisoning (wings Saturday night) or he caught a bug.

Routine and Tybee Island (our home away from home)

It's nice, the routine of the day.  For many years I watched Ron's life circle become smaller and smaller - less time and energy for the things he liked to do - more time spent at doctor appointments, days in bed from pure exhaustion, and an occasional trip to the ER.

Now our days are filled with glorious mundane happenings: work, doing the dishes together, watching movies, and visiting with our grandchildren.  Life couldn't be simplier and it's perfect.

This summer we'll spend 8 days on Tybee Island.  We rent a large cottage just a block from the beach and invite all the kids to come; last year our middle child, Michael, got married on the beach and the whole family was there.  This year will be a quieter house.....and we hope to continue our annual 'Summer on Tybee'.  Ron and I were talking about our trip the other evening - hoping one day the beach house will be packed with all the kids and grandchildren  - but this year a quiet time of rejoicing - sleeping late, great food, walks on the beach, and to end each day with our comfy old quilt sitting quietly together at 'the point' watching the sunset.......all as it should be.

3 Months

Ron is stronger day by day - it's been a little over 3 months; I remember the doctors telling us at 3 months we would have our life back - at the time, I didn't see that happening.  After the surgery with medication complications - I wasn't sure if he'd ever be himself again....what a difference 3 months makes.

Here are a few recent photos of Ron.  He looks as good as he feels.