When a Blogger becomes a Storm Chaser

Sorry for the lack of updates but Hurricane Sandy has taken over my life.  Not in a material way... We never lost power, TV, Internet, running water, etc...  Plenty of food.

But we have become TV  junkies watching non-stop storm coverage since Monday.  Every once in a while I ventured out to see for myself.  This gave me an excuse to dig out some foul weather gear that I haven't seen in decades.  Tall rubber boots, rain pants, jacket w/hood.... Armed with a waterproof camera I headed toward the river (at low tide) to see what I could see.  Another walk took me to Times Square to hang with the tourists with useless Broadway tickets.

Power went out across the street (39th St) and south. So we are lucky to be on the north side of this divide.  last night I walked up to a bar on 47th Street and it was business as usual.  Quite a different scene compared to other parts of NYC.

So how is Yvonne you ask....  Well I ended the prior post saying if there was anything in the lab tests we'd get a call.  We got that call.

UTI#1 had indeed arrived.  They called in an antibiotic and Yvonne started taking them and presumably it is gone by now.  She feels great.

A doctor appointment and a clinic visit were cancelled because of teh storm but neither was critical so they will happen as soon as they can happen.

One thing we talked about at length was how different this might have been if Yvonne was still on dialysis.  Braving the storm for a few photos is one thing but getting to and from a hospital over a mile away might have been a real challenge and would the dialysis unit be operating as usual??

So so lucky....

A solo flight

Yvonne went to the clinic today for her weekly visit.  The biggest difference is that she went alone.

This caused all sorts of questions from the medical staff.  Where is he?  Is he OK?  What happened??

Perhaps there weren't really that many questions but it sure didn't go unnoticed:)

I didn't go because I had some work to do and figured (correctly) that it would be a "no change" sort of visit.  We can tell at our end because every day Yvonne checks temperature, pressure, urine output, weight, etc. Plus she is keenly aware of how she feels and she feels fine!

We notice everything and there was a mild concern because 3 or 4 days ago Yvonne commented on how cold it was in the apartment and I wasn't even wearing a shirt. <insert your own joke here>

In the past this might have been the first sign of a fever (we checked temp and it was normal) or maybe something else was off.  The expectation was that hemoglobin was low (because it has been slowly declining since the transfusions) but in fact it was up from the prior week.  Another thought was a UTI but no other symptoms backed that up.

But urine and blood tests will be done using today's samples and we will get a call if there is anything to be concerned about.

So yes, no news is good news.  Next visit is next Monday.

Stepping it up a notch

Captain's Blog:10:20:12

The ship's name is not Enterprise, it is "Manhattan".  It's not a spaceship it's a yacht.  Our mission isn't to explore distant galaxies, it's to eat brunch.  Sometimes it's OK to aim low.

Enough with Star Trek, this is Yvonne Trek:)

On Friday I received an email with local news, etc and near the bottom was a link to a "Foliage Brunch Cruise".  A few clicks later we were all sat for a Saturday morning ride up the Hudson River!

Allow me to brag for just once.  I was pleased with my creativity in finding an activity that was not at all strenuous yet got us out of the house and was actually a lot of fun.  It was also not a crowded situation.  The boat could hold 80+ people but the tables and chairs and serving tables took up so much space that there was maybe 40 on board.  And plenty of room so Yvonne didn't need to be too close to anyone on the ship. 

Yes, Purell-man as on duty every time she held a handrail.  He's everywhere!

The weather was outstanding starting around 60 and heading up near 70 and sunny on this 3 hr journey.  The yacht left from Chelsea Piers and went close to the Tappan Zee Bridge before turning around and heading back down the Hudson.

I won't call it peak colors but there was enough orange, red and yellow out there on the sunlit Palisades to make it worth the price.  The food was good and the Mimosa (I had mine plus hers!) was a nice touch.

Since we were on the West Side it was easy to decide to make a slight detour to Central Park to sit on the grass and listen to our friend David Ippolito sing some songs and entertain the crowd.  He's been doing this for 21 years and today was the final day of playing in the Park in 2012.  He was happy to see Yvonne and we were both happy to be there too.

As we were walking through the park I said to Yvonne that the period coming up after recovery could be the best she has had in maybe 5 years.  The last two on dialysis are obvious but the 3 before that were really not great as Yvonne battled a digestive disease or disorder (we never really knew what it was) that made it so hard to have fun as she was nauseous all the time and could never be far from a bathroom. (figure it out).

Today just might have been a sneak preview of what we will find as we explore the next galaxy.

Stepping out!

As reported yesterday, Yvonne was cleared to get out and go places as long as it is somewhat isolated from other people (and their germs).

As luck would have it, one of the bands we like was playing a gig at 2:30 PM.  Who goes to see live music in the middle of the afternoon?  My guess was nobody.

Perfect!!  So Yvonne and I went to see Julia Haltigan's band at the Rockwood Music Hall following a pastrami on rye from Katz Deli.  Not a bad day at all:)

This tiny little club has 3 tables and 12 seats and only 5 of the seats were in use. (there were another 30 people along the wall and at the bar).  The set was only 30 minutes and we left immediately but still it was nice to go out again. We also sat with Julia's mom who we hadn't seen in a while.

But getting out also means Purell-man is busy. Yvonne touches a door knob... Squirt.  She touched a chair to pull it away from the table... Squirt. Touched the table. Squirt. Touched the door to the cab. Squirt. Squirt Squirt!

My advice is to invest in whoever owns Purell.

The weekly visit to the Clinic

That's right. We are now in the weekly visit phase of recovery. This means Yvonne is stable enough to go a full week between checkups & lab tests.

We went this morning and met with the usual 3 people:

The PA does the most work. She asks Yvonne a bunch of questions to determine if things are on track and reviews the latest lab results and if medication changes are needed she is the one to communicate that. She was aware of  the "lozenge fight"  from last week as we asked her to settle it.  To do that, she and another PA each popped a table at the same time. One sucked on it while the other allowed it to dissolve.  Sucking was  7 minutes while dissolving was 20.  They realized that in fact it is ambiguous to say "put it in your mouth and don't chew and wait 30 minutes...".  After a good laugh it was agreed that Yvonne should suck it...

The nephrologist comes in next and essentially is there to deal with the new news. Since there wasn't any that was a brief chat.

The lab tech draws the blood and off we go.  Later today we should get a call if the lab results require a medication change or some other discussion.

I know it was 3 days without an update and so many of you were on the edge of your seat.  Well the fact is they were pretty uneventful days. I left for work Monday & Tuesday and came home in the evening. We ate dinner that Yvonne cooked, watched some TV,  discussed the events of the day and went to bed. Pretty boring stuff, right?

Yvonne has been getting out more.  Walking is encouraged and she has been taking walks that are getting longer and longer. Yesterday's walk was to 45th & Vanderbuilt which is just under a mile round trip.

This has led us to raise the question.. what can Yvonne do and what shouldn't she do?

The essential elements of the answer is that she should try to stay in a place where we can control her exposure to sick people or the places sick people have been.  She should avoid bending and anything that will stress out the abdomen.  Generally no exertion.

So how about shopping???  Well yes, if the store isn't crowded. And she doesn't do any cartwheels in the shoe department:)

How about restaurants?  Well yes, if again, the place is not so crowded that you can't help but be in a crowd.  So beer and wings at the bar at Brother Jimmy's BBQ is out.  But a walk to a neighborhood restaurant at off hours should be fine.

Going to the Movies got the thumbs down.

So slowly but surely life is returning to normal.  It will be a new normal and that is a good thing.

Saturday in the Park

Autumn is one of our favorite seasons.  Saturday started off rather chilly (low 40's) but the forecast was to reach mid 50's and I thought we should take advantage of this and get outside for a while..

We left around 1:30 by cab and got dropped off at the 72nd St entrance to Central Park.  It was great to be out of the apartment and not heading to see a doctor!

Our route took us to Bethesda Fountain where it was warm and sunny.  Then walked through the Bethesda Arcade where the Boyd Family Singers drew a crowd and finally arrived at the Bandshell where a dog-fest was going on.  Big dogs, little dogs, hundreds of dogs!  Yvonne loves dogs but there is too much risk of germs to pet them.  However I grabbed a pair of gloves in case she got cold and thus that problem was solved.

From there we strolled slowly through The Mall sitting and resting as needed.  We even stopped to "climb" on some rocks to check out a nice view.

Next we visited the Zoo for two reasons that have nothing to do with the animals.  Years ago we became members of the Wildlife Conservation Society because that gave us free entry to the zoo which has the only really clean bathrooms in the park!  It also has a cafeteria that would  give us a warm place to sit down a while and grab a bite to eat.

But you can't walk in the zoo and not take a look at the Sea Lions at least.  And these guys (or gals?) were really animated.  Where they happy to see us or was it almost feeding time??

Sure enough the schedule said feeding would begin in 8 minutes so of course we waited since we had secured the best viewing location for the show.

One sign that Yvonne is feeling better was her reaction when a dad thought it was reasonable to stand in front of us with his kid on his shoulders.  Let's just say she displayed a degree of unhappiness and he lowered his child and walked away...

I think we walked roughly a mile by the time we hailed a taxi to take us home.

The evening was fun too with some friends coming over to eat & watch the Yankee game.   It was a fun  night including the dramatic bottom of the 9th comeback.

What happened in that game after midnight is part of the Sunday story.  Saturday was perfect.

Enjoy some photos from the day!

(sorry but I haven't figured out how to resize and rearrange them!)

I got nuthin'

No Report.

maybe the Yankee loss in Game 4 zapped my spirit...

Yvonne had a few uneventful days at home. Status quo.  The pain is less which is good news.

- - - - -

Yes this blog is all about Yvonne , her new kidney and her recovery but I wanted to just mention that I finally started fundraising for the Bike MS event which is 9 days away.  I set a goal to raise $10,000 for the Multiple Sclerosis Society which is what I did last year ($75,000 since I started doing this!). I  know a lot of people and I ask a lot of people and I find that so many of you are really kind and generous and supportive of my effort.

If you can help with a large or small donation I would appreciate it

http://main.nationalmssociety.org/goto/PhilCaracci

Thanks.

The Lost Blog Post

I was so bothered by the "lost blog post" that I attempted to recreate it from memory.  I know the original was better but this is pretty close.

The Monday visit to the clinic was less than satisfying for me.  We came there a day early because we thought here was a problem with the discharge from the incision.  The clinic visit was all about checking kidney function which is great and the questions about the incision was being left to the surgeon... who didn't have time for us on Monday. 

But hey, we still have the Tuesday appointment so we'll just have to come back.  At least that's what we thought before the 4:30 phone call on Monday told us that the surgeon didn't feel the Tuesday visit was necessary.  It seems he heard all was well from the clinic and so it was cancelled.

Bullshit!

A phone call back and forth and the appointment with the surgeon was reinstated.

So we show up Tuesday morning and we follow the protocol: weighed, pressure checked, temperature checked and oxygen level in the blood checked.  Then they ask Yvonne how tall she is.  They asked her that question yesterday.  Were they really looking for much of a change in 24 hours?

Next up is the Physician Assistant, the very same PA that told me the surgery was routine (see this entry).  She said that Yvonne was doing OK considering how complex the surgery was.  That's all I needed to hear. I pounced.

Here you are telling us it was very complex and when you saw me after the surgery you said everything was routine.  I have been hearing ever since that it wasn't and I was frankly annoyed that you didn't take the time to tell me the truth.

She started to defend herself but instead dug the hole a little deeper.  "We don't typically say things people can't understand".

If you know anything about me you know that wasn't what I wanted to hear.  I glared at her saying that we've dealt with 3 dozen people in these fancy white coats over a 19-year period and never did we feel this way before.

She countered by asserting that there were not one but TWO expert craftsmen involved in the surgery and everything was done the proper way.  She wasn't getting it. 

It was clear that what we have here is a failure to communicate....

I made another attempt to explain that I wasn't complaining about the medical decisions but rather the communication that should accompany them.  Finally I said that she should consider this as feedback others might not give her but she was getting it from me.  Do with it what you want...

She was quiet for a few seconds and then left to get the surgeon.

Mr. Big strolled in and glanced at the incision and declared everything was fine.  He was unaware that I was armed with charts with dates, times, lab results and questions.

"On Day 9 Yvonne had no pain and no discharge but here on Day 19 she had ample amounts of both. Why is that?"  He began explaining the complexity of the surgery and I interrupted saying "do you know this is the first time I'm hearing this?"  He seemed confused and Yvonne reminded him he said he didn't have time to see me after the surgery so he sent the PA.

I went on to say this was the first time I saw him since the pre-surgery meeting a few weeks in advance.  I thought his expression changed at this point and he was aware that there might be something to this.  He started to explain...  You could see the gears shift as a person who was mentally out the door now realizes there is more work to be done here.

Mr. B. explained that the surgery was so complicated because he decided to attach the kidney to the "main line" which is very difficult to access.  The surgery to clear a place for the kidney was far more involved than either of Yvonne's first two transplants.  The two prior transplants caused the internal organs to adhere to each other requiring a lot of cuts and bleeding. That's why the recovery time would be so much longer.

"Ummm, ya know Yvonne's been telling the world she's back in 4 weeks or so...."

No way he said.  8 to  12 weeks is more realistic.

I again reiterated the point about the lack of information on the day or the surgery. I told him I had bloodied his PA on that point. He jokingly said that's why he sends her in first.  Then he asked why I didn't call his office if I had questions. 

I sat here silently.  The answer was that it never occurred to me.  Checkmate.

We left with the understanding that there was probably some fluid trapped in the layers of skin/fat/muscle that was leaking out and it would continue to do that for another few weeks.  He wanted Yvonne to take pain killers if need be but to keep walking.

We left there to get a CT scan which proved he was correct about the pockets of fluid. He's always correct. Damn it.

Conclusion: The big news of the visit is that the surgical "wound" would take a lot longer to heal than was anticipated.  We will therefore be spending a lot more time at home together which can be somewhat dangerous.  Today we started off screaming at each  other over how long it takes a lozenge to dissolve. I'm thinking we have the ingredients for the next big Reality TV show...

 

 

Meeting with Mr Big (Take Two)

This is so sad...  I wrote a fairly lengthy update about today's visit with the surgeon.  It was posted and then auto deleted.  It was quite long but  also fun, informative and now... gone.

So here is the less-fun, less-informative version.

Yvonne was examined by the surgeon today and he said all is well.  He heard Yvonne's concerns re the discharge and abdominal pain and felt this was normal given the complex surgery.  So he ordered a CT scan that showed some pockets of fluid trapped just below the skin. All normal and should be gone in a few more weeks.

He stressed that this surgery was not like her first or second transplants and she should not expect to be back to normal as quickly.  He is saying 8-12 weeks. Wow.

I wanna cry

I started a blog entry on my iPad in the waiting room. I wrote one sentence.  I came home and wrote 2 to 3 PAGES more and then and published it.

I later picked up the iPad and the auto-save feature in blogger saved that original one sentence draft effectively deleting my long post. Shit!!  trying to recover it.  if by chance you have it on your screen please cut and paste and email it to me....

Phil

Her answer surprised me

A quick recap first... Friday some fluid started to leak from the incision. Saturday discussed with doctor on the phone and he suggested the Tuesday clinic be moved up to Monday.

So we returned from that visit with no new information.  The site was examined and no redness or heat suggesting a fever was observed.  The PA thought all was well.  The nephrologist (who we spoke to on the phone) took a peek and didn't see a problem.  Something was leaking and the surgeon should handle it since the kidney function is perfect.

Next was an unscheduled visit to see the surgeon.  His appointment was on Tuesday but we are here now and we have this issues and.... he didn't have time to see Yvonne today. So we'll be back here again tomorrow morning.  Unbelievable...

But I gave this entry the title above because when the surgeon's Physician Assistant asked Yvonne to describe the pain from 1 to 10 she said "5 or 6".  What?!  I expected to hear 2 or 3.

Yvonne has been mentioning that she feels pain on her left side (not where the kidney is) but she never said to me or to any of these medical folks how bad it was.  Until now.

AND... she never said to me until the cab ride home that it has been getting worse!

I was pretty upset that she failed to make that point at all.  I'm sure they are all thinking as I was thinking that this was still soreness from the surgery that would fade over time.  But the fact that it has intensified over time is something that would be looked at differently.

So that is what we'll talk about tomorrow.

No ER trip this time

The doctor called Yvonne back and didn't think the ER was necessary based on what he heard. No fever now, no elevated white count from yesterdays labs.  Still instead of waiting until Tuesday he wants Yvonne in Monday morning for a look.

So I went for a bike ride and Yvonne hosted a visit from her 4 aunts.  We both had a good day!

Later that evening I tried to introduce laundry into our relationship.  Yvonne pretended that she had totally forgotten everything on this subject.  A few examples: she put clothes in the dryer but never started it.  They remained wet.  She complained that "someone" left their clothes in the other washer.  It was us.

In a few days we will repeat the lesson.

A fine way to end the week

Yvonne is doing so well that the clinic visits will drop from 2 per week to 1.  The next visit is on Tuesday and besides the usual suspects we will meet with the surgeon.  It will be the first time I'll talk to him since the surgery.  You may recall I didn't see him that day either...

I also should mention that the reddish colored urine was a single incident. So really not a concern.

But the subject of this post is about how much fun yesterday was.  particularly yesterday afternoon.

Kathy came over following her doctor visit and reported that all was well.  In two weeks she can resume totally normal activities. Hurray!!

Earlier I had suggested to Yvonne that once Kathy gets here that we go up to the roof.  This idea was met with resistance.  Too cold. Too windy.  Too much trouble. Blah, blah, blah, blah blah.  Didn't matter, I knew we were going to the roof.

Kathy was in the living room when her husband Bob arrived after parking the car.  He was in shorts. "Nice day out there?" I queried.  They both responded how beautiful it was.  Indeed the NYC  forecast was for sunny skies approaching 80 degrees.

So I suggested we go upstairs and looked at Yvonne assuring her if it was cold or windy we'd return to the apartment.  Well it was nothing short of perfect weather!  Clear, sunny, gentle breeze and warm.

I quickly made a trip down and back with water, ice tea, cheese, crackers, and the party was underway.  We were joined by a neighbor who just happened to be up there, then by  two of Yvonne's coworkers, then another neighbor. The change of venue was very welcome as we've been spending way too may hours in our living room.

Earlier in the day we went for a short walk to the East River and back which I estimate is just over half a mile.  I will try to get her out every day weather permitting.

But I unfortunately have to close on a down note.  It started Friday afternoon and again over night... Yvonne noticed a secretion from the incision. It is not blood and we aren't sure if it is a problem or not.

Damn it if these things don't ALWAYS seem to pop up at the worst time!!  Friday at 5 PM was the first sign of this.  The Transplant clinic is Mon-Fri/7AM-5PM so if anything needs to be done or just looked at... it means a visit to the dreaded ER.  We are now awaiting a call back from the covering transplant physician to discuss that very topic.  In this case you could safely assume that "no news" = "good news".

Be careful what you wish for!

In the prior entry I said everything was routine and pretty much happened as expected.  It may have sounded as if I wanted a more interesting update

Well it was not expected to see blood tainted urine on Thursday night after going 5+ days without any.

Could it be my fault?  Well maybe.

I was expecting them to say the extra moving around that Yvonne did on Thursday (following my Wed night rant) could easily explain the blood.

The medical team heard of this at this morning's clinic visit and they aren't concerned.  The PA believes it is from the stent. It is not uncommon.
On a different topic... I previously mentioned the balancing act with the anti-rejection medication. Last Friday the level was low and the dose was raised from 1 to 2 mg at night. Then earlier this week it was lowered back to 1 mg. and 0.5 mg capsules were ordered so they could maybe balance it at 1.5 mg.

Cousin Kathy is on her way in for a follow up appointment. We hope the timing works so the "Kidney Kousins" could spend some time together.

I'll close by noting that yesterday when I reported that there were only 2 clicks on the blog in the entire day I was wrong.  Either stats don't update immediately or I just messed up but it seems my readership is 17 times bigger....34!

Not so interesting anymore?

Blogger shows me statistics about the readers out there.  On the day of the surgery the link was clicked 242 times.  Yesterday it was clicked 2 times.  One of them was me.

So maybe this has transformed from a blog to a diary.... maybe the blog Jumped The Shark when I went on at length about urine color.  Who knows.

Wednesday was a regular day.  Yvonne had 3 meals, took two batches of pills, had 3 visitors drop in and the Yankees finished off the regular season with a convincing win over The Enemy (Boston Red Sox).  All of this was expected.

This update is too short so allow me to make it longer.

I mention Yvonne's meals but there is something abnormal going on here.  They are tiny meals and often she is eating but has no real appetite.  We learned 4 years ago that celebrating weight loss is not so good when it is a symptom of a medical problem.  The short dietitian wants Yvonne to eat more but so far that isn't happening.

And perhaps this is related.... Yvonne seems to have no energy to get up out of her recliner.  I will concede that if she can't lift anything, touch anything, bend down, or go out it drastically cuts down on the reasons to get out of the chair.

I got a bit loud and my annoyance showed when I said she really needed to get out of that chair.  She did. And went to bed.

Less pain today

Yvonne took some Tylenol for the pain in the evening yesterday and hasn't needed any more since.  The pain is not gone but clearly less of an issue today.

The ultrasound yesterday did not reveal anything that could be causing it.

Thanks to Iva's MRE we had another great dinner at home last night.

and how about those Yankees! That win last night is probably what cured Yvonne's pain.

Mixed results.

Clinic Visit #3 is behind us and two topics dominated.

First the good news.  Yvonne's creatinine was 0.9 which is BETTER than a person with normal kidney function!!

But we couldn't celebrate because Yvonne is having pain in her mid-section that is really making it hard for  her to move.  She just took the extra strength prescription pain killer that she hasn't needed for maybe 5 days.

An ultrasound has been scheduled for later today to see if it shows any explanation for the pain.  It is not on the side of the transplant so nobody is thinking this is a kidney matter.  It seems to be muscular since it is only evident if she stands or walks.  No pain at all if she sits down.

Yvonne has a stent in the surgical connection between the bladder and the kidney which will be removed at the end of the month.  This is not in the area of the pain.  But right now we are without even a guess so everything is being considered.

On the non-medical front I thought I'd mention cab fares.  They recently went up and I'm feeling it with hospital and followup cabs probably between $200-250.  Each ride has been $10-$20 and there has been more than 20 in the past 13 days.  On the other hand if I drove and used the valet parking (forget street parking around there) that is a minimum of $19 and if I had to call a car service it would also be more.  Since Yvonne is not up to a mile+ walk and since she is banned from mass transit for now there really isn't any choice.

Yvonne had her first meeting with the dietitian.  She is so short!!  Probably 4'10" as Yvonne at 5'2" seemed to tower over her.  LOL

The Color of Urine

I like that title. Sort of sounds like an Off-Broadway Play:)  Ha Ha...

Some of you may have been "lucky" enough to see a photo I posted on Facebook for about an hour and then removed.  It was a photo of a urine sample.  Yvonne was not nearly as amused as I was.

But the point of the photo (yes, I had a real point), was to show that the urine was not red as it was that morning when we arrived at the ER.  If it was red Yvonne would have been admitted for observation but since it wasn't we could leave.  We waited 90 minutes that day to have a Doctor say it isn't red which of course was obvious to anyone who saw the bottle or my picture of the bottle.

I bring this up now because the color, while not red, was also not normal.  It was dark in color (dark yellow/Green) and cloudy.  But here we are 5 days later and the color now is normal!  If this topic is interesting you can continue reading here http://www.urinecolors.com/  (who knew that web site existed??)

I'm leaving Yvonne home alone and going to my clients in NJ. I'm sure she'll be fine and the urine will be the right color.