getting there

Dave and his entourage went to the kidney doctor Tuesday.  It is always an adventure when we go anywhere.  This time caregiver Cindy had the honor.  First she opens the door and the ramp creaks out, then I roll in, turn and roll my chair onto the locking bracket.  This might take several tries.  Finally, it is Dave's turn.  He pushes the walker up the ramp, parks it and sits down.  Of course this entire process is repeated in reverse when we arrive at our destination.  Is it any surprise that Todd meets us so he can save time?

Once there we fill up the waiting room.  It is always fun to see the nurses face when the 3 of us head for the exam room.  It was bad enough with my chair, but you add Dave's walker and the room gets smaller still.  We had stopped to pick up copies of all the labs just in case.  The doctor did have all the blood tests, and she was pleased that the kidney numbers were continuing to drop.  There is no way to predict where they will settle, but she did say that seeing him in a month would be fine.  She also noted that he was anemic, probably caused by all the blood tests.  He had blood work every day in the hospital and ended up getting two units of blood.  (No, I don't know how much that is nor how much was taken for each draw.) The first week home he had blood work Monday Wednesday and Friday.  His was unsure how often he was supposed to go the second week. 

Once a month would make her happy but I think the cancer doc may want it once a week.  We see him next Thursday so we can find out then.  Things could get interesting soon.  The cancer doctor would love to get a scan of the tumor with contrast because it is a much better picture.  This means drinking some kind of liquid followed by an IV.  I thought the kidney doctor was going to jump out of her skin at the thought of doing that.  She managed to calm herself and say that any IV for a scan would be too much for Dave's kidneys.  Part of me wanted to laugh at her reaction, but it was nice to get a direct answer.  The blood draw on Monday and the doctor’s appointment on Tuesday were the only medical events this week.  YEAH -- sure makes it easier to have fun when the day does not focus on medical stuff.

So we will wait to see what the cancer doc will say on Thursday.  He has told us that the kidneys and liver must come around and start working as good as possible before he can recommend any type of treatment.  Right now all Dave is taking is a few pain killers during the day, and some Ativan at night to help sleep.  The night sweats are the worst in his opinion because he has to change shirts several times a night to try and stay dry.  He gets tired easily, and usually takes a nap after lunch.  Nothing new in that for those of you who know him well.  So we will try to keep you up to date as the week unfolds.

Tidbits of Knowledge

Next time you need some brilliant piece of trivia to enlighten those around you, remember these earth shattering tidbits.  Fabulous Fact 1:  Did you know that men and women sweat at different rates?  Women start to sweat when their body temperature goes up a half degree.  Because women don’t have to drop their temperature as much, the body does not have to send as much moisture to cool down.  Therefore it is true that women don't sweat they glow. 

Men don't get their act together as quickly as women (is that a surprise?), and start to sweat when their body temperature goes up a full degree.  Men bodies have to work much harder to cool down.  That is why men show sweat more. 

Fabulous fact 2:  When kidney function is not good,  it also impacts the cognitive ability of the brain.  I think we started to believe this after three doctors told us.  The fact that Dave started to be more rational helped too.  Once the brain worked better, he also remembered better.  So if your brain function is related to your kidney function, does that mean the phrase that Dave likes to use about some people, “ **** for brains”, might be true?

Great Weekend

Every thing is brighter now.  When given the prescription for appetite enhancement we were told that Dave would gradually start wanting to eat and really enjoy food again.  He is definitely interested again and is eating a greater quantity.  His sister and brother-in-law, Margie and Mike were here this weekend and we went out for a huge breakfast. After that went on a good walk .  After sitting for a while he was ready to enlist Mike to help him downstairs and talk about a project Dave had in mind.  The strength of his voice was back to normal now that he had a project.  Between eating more, getting out to Todd and Cindy's house and the restaurant and having a project his attitude is so much better.  We are interested to see if tomorrows blood test reflects the change.

Time Flies When .........

Wow. it is Wednesday already.   Between follow-up doctor appointments. blood tests. interviewing and training night caregivers. and generally getting organized time has flown by.  Sunday was an interesting day.  The service man from dish network was here to hook up the TV  the kids had moved from the basement to the bedroom.  In our advanced day and age you can't just plug in and expect things to work.  Good thing there was no charge because he was here for 3 hours chasing down broken cables etc.  Cindy was smart.  She suggested Dave go for a pedicure so off they went leaving the boys here with Todd.  Did you know that nurses are not allowed to cut nails?  We knew my caregivers were not allowed to do it so I have been getting monthly pedicures and manicures.  Dave can choose between going to a foot clinic or having a pedicure.  Which would you do? No he did not get color.  After a peaceful time talking talking with Cindy he came home to 3 hungry boys and 2 hungry adults.  Everything did calm down and Kari finally headed home. She had been here since Wednesday and had to catch a 5 am flight Monday morning.  Sure hope she slept on the plane.

Roller Coaster Ride

I started to write this on Friday when we knew Dave would be coming home on Saturday if nothing new reared its ugly head.  For some strange reason I could not concentrate.  :-)  I decided to still post because of the content and explanations. 

What a week!  I never did like roller coasters, and this week was no exception.  Tuesday was the low point.  The daily blood test showed Dave’s kidney function numbers were elevated from the previous day after the doctors tried going without the IV fluid overnight.  If the kidneys did not start working better soon, we would need to decide what we wanted to do.  When hospice becomes part of the discussion you know tough times are ahead. 

Fortunately Wednesday brought better news as the numbers improved.  He began to look less yellow and was more on top of things.  One of the interesting things we learned this week was the impact poor kidney function had on the brain.  After hearing this from several doctors several different times, we finally believed it.  Even more convincing was the change we saw in Dave.  One doctor did say he might not ever have a clear memory of the previous days.  Once there was some improvement then they could start switching from IV drugs to oral medications.  Getting Dave off of the IV drugs was important because they were not going to release him until he was off them.  Having 3-4 doctors checking on you every day makes a busy day.

He Is Home !

Dave got home about 5 this afternoon.  Yahoo!   It was a long day for him and Todd and Kari.  They came home armed with lots of instructions and lists.  Included were new prescriptions and over the counter medicines that would not stress his kidneys. An even bigger list prompted a clearing of the medicine cabinet of the cold remedies. head ache or body ache and other.  We did keep a few things to put in the guest bath.  After the past week we did not want any chance for further damage.  The last meeting was with the dietitian.  Basically he needs a low fat diet with natural foods.  One of the big concerns is the additives in packaged or prepared food.  Another concern was with alcohol.  He can have one very small glass - 4 ounces a day.  The last direction was to eat often and slowly. For a person that tends to eat quickly and not snack these two could take some time to change. Limited wine might also be a problem but I got the impression that how he felt the next day would take care of wanting it.  Now we just have to figure out our new routines.

overly optimistic

Saturday Dave went to Emergency with dizziness and very low blood pressure.  After some investigation they found that he had a kidney infection caused by the blockage of the bile duct.  He was admitted to the hospital and given fluid and antibiotics by IV.  The ER staff was wonderful as they explained each step and kept us informed.  Thanks to computer records they were able to quickly compare Saturdays blood test and Mondays test with all his previous ones to see his normal.  (our experience shows again the value of computer records - they are NOT an invasion of privacy) Our primary care doctor was out of town but his fill in is wonderful.  Not only did he have time to talk to Todd in the hall and acknowledge our frustration with the nurse and doctor running the clinical trial but he actually called with an update on Sunday.  No matter how hard you try it is very difficult to always be there when the various doctors are there.  I was fortunate to talk to the renal specialist.  In answer to my question she explained that the kidney function was slightly elevated in  Mondays blood test and unless you looked back over several tests it would not be significant.  After 24 hours of antibiotics the blood levels had remained the same.  This is good, now we wait for the lower levels to appear.  They want Dave to walk but only with supervision.  Obviously they have learned from experience - his bed is wired to alert the nurses station if he gets up.    I will try to post up dates as things change.

MUCH BETTER

The day started with sunshine that was a good indication of how the day would be.  It takes a special type of friend to drive Dave at 6 AM so Todd could stay with me.  Thanks Tom.  Caregiver Cindy came early, but even so we had already had a call from Dave saying he was going into the “room” soon and expected to be in recovery about 9:30.  Sure makes a difference being the first one of the day.  Todd had him home before 11:00. 

The stint had been blocked so that was probably the cause of most of his misery the last few weeks.  Now the new stint is stainless steel so that should help.  Hmmm, I didn't ask the “shelf life” of this stint.  After fluid and a snack he went to bed and slept almost 5 hours.  That is probably the longest stretch of undisturbed sleep in weeks.  Already he looks less yellow.  (How many of you remember the commercial - you wonder where the yellow went when you brush your teeth with Pepsodent.)   An expected sore throat makes his voice raspy.  Thinking what went up and down his throat makes me want to gag.  (This from someone with a permanent tube down her throat.)   Saying he had an endoscopy sounds better. 

Continuing on the sunny day theme was my BCI session.  When I had scheduled it Dave was going in for his first listeria infusion.  I thought it would be a good distraction and make the time pass for me while he was in for an all-day session.  Having a 93% success on the calibration section last time put some pressure to duplicate that.  Just after I started, the cuff in my throat that makes the air go to my lungs rather than out of my mouth, started to leak.  It was a very small amount that made a slight noise on each breath.  Being the stubborn/bull headed person that I am I continued on thinking I can do it.  Well I could not; the score was a dismal 73%.  We added some more air to the cuff and started over.  Time now to FOCUS, FOCUS, FOCUS.  Next round was much better with a 91%.  YEAH, now onto spelling real words. 

Starting with level 4, I was able to quickly go through it.  Moving on to level 5, I was successful even though Dave came home in the middle.  Betts paused the computer and when we resumed I was able to go right back.  That was very satisfiyng and something I had wondered about.  Each session had been in a quiet calm atmosphere.  How successful would I be in a more normal environment?  Today certainly tested that. 

After finishing level 5, I went on to free spelling.  This was my opportunity to spell whatever I wanted.  It followed the same format, letters would be flashed in random order and I was to FOCUS on the letter I wanted.  This time the phrase was my choice, and it was the first time I had needed to use the space symbol.  On the two sentences I only had to back space once! This time I had enough sense to stop when I was beginning to get tired so I ended on a positive note.  The only negative was that I had finished everything.  Betts will soon be going to an international conference so I hope she will come with new ideas and the team will find more ways for me to play.  As you can see it was a sunny day in many ways.

UPDATE ON DAVE

Many of you have asked how Dave is doing.  Depending on the day my answer would vary.  Last Monday I would have said not bad, you can tell his body is working because of his need for sleep.  Tuesday probably would have been the same.  Wednesday was a different story as he felt yucky and slept most of the day.  Fortunately Thursday was better and he enjoyed having a friend take him to Costco.  Just getting out of the house was a boost to him. 

The previous paragraph was written Monday afternoon while Dave and Todd were at an appointment with the palliative care nurse practitioner.  I think I had mentioned meeting with them early on.  For some reason we had not followed up on the meeting.  Dave had been checking in with the nurse handling the clinical trial and getting very frustrated.  Everyone commented on how yellow he was and he was always tired.  Each time he talked or emailed the nurse about back pain or his yellow color, or that his urine was darker than before the bile duct stint was put in, she would tell him to drink more water.  Drinking 64 ounces a day of water also means having to go to the bathroom lots.  How much more can anyone drink?  

Getting the palliative team involved was the best thing to do.  Besides really listening, the focus is on the person not the trial.  Coordinating care, follow-up on prescription, ordering lab work and adjusting medications are all part of the job.  Good thing Todd got the appointment because the blood tests for some of the liver functions were terrible.  Bad enough that changing the stint was moved from the 20th to the 5th.  So now we might get an idea if the fever and pain are because of the cancer or the trial or a blocked bile duct.  Moving the date for replacement of the bile duct required moving the first infusion of the modified listeria bacteria.  This is good and bad.  Dave has been told that it will make him feel like he had a terrible case of the flu.  Good that he doesn’t have to deal with it this week.  Bad that he has another week to worry about it.  In addition 2 weeks after the infusion he will get another full set of CT scans that will show if the tumor is smaller, the same or grown.  I think that will help us mentally.

Oh, and then to top everything off, our Hotmail account was hacked, and several people were told Dave was stuck in England and needed money.  Fortunately none of them sent any, at least not to our house.  So when it rains (opps – bad word to use in Oregon), it pours.

Thanks to all of you for the heartfelt continuing questions and concerns about both of us.  You cannot imagine what a help they are.

irritating

As most of you know we were hacked.  Hope it did not mess up anybody else.   Of course if you want to throw away $1500 you can send it to us instead of the hacker.  :-)