No need to blog, unless I get bored...

Could this be it?  Could this be the last entry in this blog??  I doubt it as I will always find something to say but if updates appear weeks and months apart it is unlikely that anyone is still looking for them.

I am writing this on Sunday near midnight and Yvonne has already gone to sleep because she is getting up for work in the morning!

The next clinic visit is 2 weeks away.  We actually have social plans and don't need to work around dialysis 3 nights each week.  Pretty cool!

I'll end with  a post Yvonne made on Facebook this evening.  It features a photo of "the Wall of Love" as I like to call it.

Tomorrow is a big day for me. I will be going back to work after seven weeks of recuperation from my kidney transplant surgery. I want to thank everyone who called, sent me an e-mail or text, sent a card, flowers, food or who visited. They were all truly appreciated. Most of all I want to thank my cousin Kathy who gave me the most generous of gifts -- the kidney!!! I also want to thank my husband, Phil, who cared for me each and everyday and went to all my appointments with me and was my biggest supporter!!!

Back to work?

It was more or less expected but today at the clinic visit Yvonne heard those words... "you are OK to return to work".

There are still some restrictions as far as lifting anything heavy and physical exertion but these are not really part of Yvonne's work day anyway.

She will always have a suppressed immune system so it is a good idea to avoid sick people, crowded places and practice good hygiene like washing hands after contacting handrails, doorknobs, etc.  Keep that Purell stock!

Check that off

One thing that was done on transplant day (Sept 20) was to insert a stent.

That was scheduled to come out the day that Hurricane Sandy roared into town but was pushed back one week.

The doctor who did this removal yesterday is the same surgeon who removed Kathy's kidney.  I have no idea how good he is from a medical standpoint because all they talk about is how good looking he is!! 

Based on their description I came up with this...

Storming back?

This past Thursday marked 6 weeks since the surgery.  A few things happened as a result of meeting this milestone:

The first glass of wine!

The first manicure!

I'm not sure which was more joyful.  When these came up at a clinic meeting a few weeks ago I saw Yvonne put the date on her calender.

I have noticed that she walks faster and the discharge is still happening but at a greatly reduced rate.

On Monday Yvonne has the rescheduled appointment to remove the stent in the bladder tubing and on Thursday she will return to the clinic. One topic to be addressed is when she can return to work.

Stay tuned:)

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.

Massive food drop yesterday!

We knew we had a few visitors lined up for Saturday but who knew they'd all be coming with food!

Millie D showed up with an MRE consisting of baked ham, and a bunch of sides including her signature crumb cake.  And she didn't stop with one meal. I think we're fed for a few more days to come. It was the easiest dinner party we ever hosted... just add water:)

Ann spent the afternoon with Yvonne and too arrived with food in hand.  This recovery period could be rough on my bathroom scale...

Speaking of recovery... Yvonne reports that the discomfort of getting up from a chair or bed is lessening every day.  Yesterday was the first day with no pain killers at all.

I can't stop myself....

I admit it... My name is Phil and I'm addicted to blogging.  There, I said it.

No energy to fight the urge so here we go with a recap of last night and a look ahead to today.

PARTY!!

Last night a few of the boys came over bearing beer and we ordered a pizza.  Yvonne totally enjoyed being a part of my Friday night fun even if she was not offered any beer this time around. 

Fresh off my trip to South America I opened  a bottle of Chilean Pisco and mixed up a drink called a Green Hornet.  Yvonne laughed watching our faces as we tasted this thing fearing "the sting".  But it was good!

A little baseball on the TV and some music in the background from our talented friends and it made for a fine evening. It sure beats a night of dialysis!!

Earlier niece Brittany and a friend dropped in with some flowers for her Titi.  Purell-man was indeed busy:)

More visitors are expected this afternoon.  This should be a very nice weekend.

Clinic Visit #2

I have to laugh....  I "pre wrote" today's entry last night.  I was sure it would go like this:

This is already feeling "routine".  Walk in at 7:30 AM, check in at the desk, get called to draw bloods, see Physician Assistant who asks if all is well as she looks over daily log of weigh change, urine output, temperature and blood pressure.

This is followed by a very brief chat with the nephrologist and nurse who take a look at how the incision is healing.

Thumbs up all around and we are out of there in under 2 hours.

Well.  The "thumbs up" part was right but the rest was waaaayyyy off.

To start with the UN Traffic monster caught us going and coming back.  Both trips topped 30 minutes to go 1.5 miles in a cab.

When we walked into the clinic Wednesday at 7:30  the large waiting room was pretty empty.  Today there was no place to sit!  It seems when you have Jewish holidays neither Jewish doctors nor Jewish patients are in but the day after is going to be a busy day!!

We waited an hour to be seen by the Physician's Assistant who summoned the nephrologist to come in so they could make it a duel visit.  It lasted maybe 5 minutes.  Everything was good. Creatinine down to 1.1. Excellent!

This good news was followed by a 90 minute wait for blood to be drawn.  That was horrible.

And after that traffic..... Total trip was over 4 hours for 10 minutes of doctoring.

The next scheduled event is Tuesday Oct 2.  I'm not sure if I will post anything in between. maybe just a brief entry to say hello.

A day with no doctors. Cool!

After 9 consecutive days in some sort of health care facility (dialysis, surgery, ER, followup) we finally have a full day at home!  And Yvonne is enjoying it.  She has been getting some air on our balcony as well as up on the roof deck.  It's been a real nice day.

So while this good positive vibe is dominating I thought this would be a good time to look ahead a bit.

There are 3 parts to Yvonne's recovery and it can take up to 3 months but we're hoping it is half of that.

Part one is recovery from the surgery itself.  The incision is maybe 10 inches from top to bottom and it cut through every layer to get to the insides.  This was no "minimally invasive" operation.  Yvonne should be walking (in order to avoid any respiratory complications) but certainly no exercise or lifting or bending.  Yvonne has some super pain-killers but she is not really taking them that often.

Part two is adjusting the medication.  Post Transplant meds are about as important as the surgery itself.  Not enough immuno-suppressive drugs could lead to rejection and too much  could cause kidney damage.  So it is a balancing act that requires constant blood tests and constant monitoring and adjusting of the meds.

It actually is very complicated as other drugs impact the immuno-suppressive drugs.  One anti-fungal drug enhances the impact of the other drug so that dose will be increased when this drug is discontinued.  Some drugs take a few weeks to saturate your system so the dosage could be higher now and lowered later.  This is the main reason Yvonne will be going twice a week to the clinic.

Part three is the one I understand the least and therefore cannot explain very well.  The immuno-suppressive drug which was given intravenously in the hospital is a real immune system killer.  Yvonne is the most susceptible to germs right now.  Over time she will get back more of her immune system but it will never come back all the way.  It's being suppressed to prevent that.  So part of her recovery is just allowing time for a partial recovery of the immune system so she'll have some ability to fight off germs in the real world.

Having said that, Yvonne must always be careful about exposure to bacteria and viruses.  Purell bottles will be everywhere she is.  On her desk at work, at home, in her purse, etc..  Right now if you walk in here, I will squirt you with the jumbo bottle at the door.  I'll aim for your hands but my aim is not so good:)

So Yvonne will be home for roughly a month other than the clinic visits, a few other doctor appointments and the occasional walk on the roof.  She can certainly talk on the phone and visitors are welcome.  This will help break up the days and weeks of being home.

Rules for Visiting  (if you know me you know I'm detail-oriented or as Yvonne likes to phrase it, a pain in the ass).

1. Again the most obvious is to stay away if you are sick or have been around sick people.  If you have school age kids at home you are more likely to have some exposure.
2. When you do come the Purell-man will great you. Use it.
3. There is no touching the patient!  No hugs, no kisses. (this is tougher for me than you...)
4. Please don't expect a typical social visit. It's highly unlikely you will be offered anything to eat or drink. Sorry but I really don't need anything extra to think about!
5. Probably best if you come in small groups or alone.  Large groups may make it harder to keep Yvonne somewhat separated from people in the room.
6. Give us a heads up that you want to visit.
7. Finally if you decide to bring Yvonne anything to eat/drink please stay away from Grapefruit, pomegranate, herbal anything  raw meats and anything from an open-air salad bar.
8. Don't piss off my cats.

A fine evening

I'm just reporting that there is nothing to report.  But somehow you know that will take a few paragraphs to say it my way.

Yvonne is doing fine and those of you also on Facebook saw a few photos from the day. Cooking and getting "treated" by one of the cats.  It was a nice quiet night at home and it was just what we needed. I reminded Yvonne that in the hospital she was urged to get up and walk so now that she's home she probably should not just sit in the recliner and watch TV.  I further suggested she could do some cooking.  Well it worked!  LOL

I did all the bending to get the pots & pans out and put stuff in the oven but she's pretty capable when it comes to seasoning the chicken (as long as she didn't touch the raw chicken) or cutting up some veggies. Not much of a strain.

Speaking of straining.... we now have a little bit of a theory about the bleeding yesterday that sent us to the ER.  Yvonne noted that the hospital bed has a button to get her in a sitting position and then she swings her legs off the bed and she stands up.  But at home she uses abdominal muscles to get up and since that's where she was sliced open the strain probably caused some small blood vessels to pop.  We discussed this possibility at the clinic and it was agreed that additional motion of some sort probably caused it.  There was no concern.

Going back to add some detail
A few days ago in this blog I made a bit of a joke about Yvonne getting stuck in traffic and she might have to pee.  Well that humor would have been lost on you if you weren't aware that once the kidney failed Yvonne NEVER had to be concerned about that.  She produced no urine for the past 2 years.  It was perhaps the only good thing about kidney failure...

So since no fluid ever came out Yvonne drastically limited the amount that went in.  She might typically drink 2 or 3 ounces at a meal and tried to limit the total volume in a day to something around 8-10 ounces of fluid.  For this reason her favorite "drink" was ice cubes.  Just ice cubes.  Sometimes when we'd be out,  I'd get a soda on ice and drink the soda and give Yvonne the ice.  Of course ice melts and becomes water but you consume it at a much slower rate so it is more satisfying than a shot of water.

With that background you can now understand how exciting it is to drink again!  In fact the goal is 2 to 2.5 liters a day.  This is quite a change from before!!  And getting up and going to the bathroom to release it is also a change.... but that's what this whole surgery was about.

A time to catch my breath

Yvonne was watching TV but she fell asleep on the couch.  That's OK. She can use some real rest.

This morning she had her first visit to the Transplant Clinic.  This will be a twice per week ritual for 4-6 weeks followed by a slow down of once per week, once per month, once per quarter and eventually an annual followup.  That's the plan.

Today's visit included a doctor, nurse, physician assistant and social worker.  Like any team, each is there to play a certain position and together they get the job done.  We were pleased with today's starting lineup.

It was a pretty upbeat visit with lots of congratulations being offered and smiling faces as we ran across old friends in the program who just discovered Yvonne is among the lucky ones who found a matching kidney (or in this case, a matching kidney found her!). One person Yvonne saw in the waiting room is her former roommate from this hospital stay who also received a transplanted kidney last Thursday.

There is quite a community feeling in and around the clinic.  Yvonne saw a young nephrologist who asked which surgeon did the earlier transplants and you could see the smile as he heard the name of one of the legends in the field who is now retired.  Doctors, patients, nurses, admin staff.  They seem to be a stable bunch who we continually see in good times and bad.

That same young doctor took one for the team as I vented a bit about the poor communication that took place during and after the surgery.  I included yesterday's ER visit as something that need not have happened if there was better communication.  I'd like to believe at a minimum I raised the issue enough that it won't happen to the next person in my shoes.

Blood was taken for tests and a urine sample analyzed and this will happen at every visit.  The medications will be adjusted based on the results of these tests.Because of yesterday's ER visit the kidney function was already known and it is the lowest yet (1.2).  This is terrific.  Yvonne probably hasn't seen a number that low since early 1993.

And since I made such a big deal about traffic jams I should say that again were able to get there and back without much trouble.

All in all a good day:)

Clinic Visit #1

Post Transplant followups will be done at the Transplant Clinic 2 times a week.  They should take about 4 hours which includes leaving blood and urine samples and meetings with 2 or 3 doctors, nurses, etc.

My fears about traffic gridlock have not materialized after the first two nightmare rides.  The last two have been almost routine.

After yesterday's "lost day" Yvonne had a visit from my brother, his wife and daughter.  She caught up on some TV and had a restful evening.  The fluids dripping from the incision continue to require attention in order to keep the area dry.

Yvonne spoke to Kathy a few times yesterday. She feels pretty good.

What the bleep was that!

I can't decide if I'm relieved or totally pissed off.  I think it is the latter.

Recapping the day. Yvonne saw blood in her urine and we were concerned. We called the transplant team and were told to come to the ER. Blood and urine was checked and an ultrasound of the kidney was done.  All of this took the entire day.  Around 4 PM they said let's see one more urine sample to look at the color.  If that's good you can go.

Well it took nearly 2 hours after Yvonne provided that sample that a doctor looked at it and agreed it wasn't blood colored anymore.

The problem was first noted around 7 AM and we got home around 7 PM. But here's the problem....

The whole episode was avoidable if someone had explained to us yesterday what they explained today.  Namely that the cutting done in the surgery was so deep that we should expect this as well as a light red fluid escaping from the surgical incision which we also observed this morning.  We were loaded up with 50 gauze pads and told to change it every 2 hours.  Where was this information yesterday???!!???

So I'm relieved that we have no problems to deal with but man am I pissed off that we were put through this again. In 12 hours we'll be back for the scheduled follow-up with many of the same people we saw today.  Go figure.

Coming home, again

We're in a cab and traffic is moving!  Look for an update soon

Where did the day go?

Somewhere between 8 and 9 AM Yvonne suspected there may be a problem.

Around 9 AM she called the transplant center to discuss

By 10 we knew we were going to the ER.

We discussed options given the traffic situation and decided to ask cousin Peter for a ride.

This got us to the ER at 11AM.

There were a series of interviews over the next hour until Yvonne got her bed in the ER hallway.  The ER was packed.  Transplant team was called.

Between 1& 2 PM blood was drawn and sent to the lab.

Around 2 PM there was an ultrasound of the kidney.  That took around 45 minutes.  Maybe more because I had time for a nap

Another hour has passed. We are waiting for more lab results and a decision to keep her here overnight for observation. If we leave we face the dreaded UN gridlock. Yvonne has an appointment for 7:30 AM which is only 15 hours away. It isn't clear to me if going hone is really the best thing.

But some patients have been in the ER for 70 hours just waiting for a bed to open up. I think if we can get out we will. 

ER Update

We had concerns 5 hours ago. We still have no answers. We actually aren't sure there is a problem!

There was some unexpected bleeding and there was a decrease in urine output which is the kidney's main job.  So of course there is concern. But now the bleeding may have stopped and she's back to making urine so maybe we overreacted to something minor. Its hard to know.

ER visit #1

We knew that we'd be making trips to the ER now and then but to go the first day home is so cruel.
And with the UN gridlock out there this journey will not be easy

Yvonne has some unexpected bleeding that needs to be checked out.

Yvonne is home now!!!

Let the next phase begin.

Of course the exit from the hospital did not exactly go smoothly due to the UN General Assembly being in session.

I went out of my building attempting to take a bus up 1st Ave but seconds into that I was reminded that there is no bus on 1st Ave during the UN General Assembly.  So I decided to walk up 1st Ave only to discover there is no walking on 1st Ave during the UN General Assembly.

So I walked up 2nd Ave only to discover we couldn't go north at the corner of 47th St because of a motorcade leaving the UN General Assembly.  We stacked up at the corner for 10 minutes until some random head of state zoomed by with 50 of his closest pals...

I continued up 2nd Ave but when I hit 59th St I had to cross to the west side of the street because of the 59th St Bridge.  There an impatient motorist almost ran me over because he didn't care that his light turned red. 

Well I lost it and start pounding on his car screaming "YOU MISSED THE LIGHT!!!"  I called out to a nearby cop and yelled "this fool is running over people in the crosswalk.  He missed the light!!!!"  Actually I used a much stronger word than "fool" but it started with the same letter...

I left with Yvonne and directed the cab to go in a route that took us far from the UN.  But silly me... that route took us near the Waldorf and all the other places diplomats stay at when they leave the UN General Assembly.  It took about 40 minutes for a ride that is under 2 miles. 

And the big concern while we are stuck in traffic is now.... she might have to pee!

Reading my writing

I just reread the entire blog from the beginning.  This was my first chance to do that.  I think for the most part I faithfully recorded the events of the past 5 days with maybe one exception.

I did not really document the anger I felt towards the surgeon, who was is the main guy, with respect to telling me what happened in the OR.  I actually made a joke about taking old radios apart and putting them back together.  Basically I didn't want to get all worked up and start screaming at random doctors because it was really just one (or two ) that I think messed up in communicating with me.

Yvonne's surgery started late, took long, and she remained in the OR for even more time because there was reason to be concerned about her very low blood pressure.  There was a lot of bleeding.

The loss of blood which caused the low blood pressure prevented them from starting the immune suppressing drugs in the OR as they typically do.  It was delayed a full day because the reaction to this drug is often fevers, rapid heartbeat, etc and this would not help if the patient was not yet stable.  I have to believe this decision was made because of concern about keeping Yvonne alive even if it meant losing the kidney, though in fairness they didn't think the kidney was in any danger.  But had it been less of a match that would not be the case.

This massive blood loss required a transfusion in the OR and another in Recovery. It wasn't until the 3rd transfusion the next afternoon that I knew ANY OF THIS!!!  And this is the point when we realized we hadn't heard the full story. It would take almost another 24 hours until we did.

I gave it to one surgeon who assisted in the transplant surgery when she came to check Yvonne on Saturday afternoon.  I know I raised my voice when I told her "I have 100 pages of health notes covering Yvonne over the past 19 years but for the last 2 days I have nothing but blank pages!!"

She recognized the level of my unhappiness and took the time to explain everything in sufficient detail.  She then tried to defend the Physician Assistant who told me on Thursday everything was routine but she saw the look on my face and gave up on that pretty quickly.

I bitched about this to a lot of doctors, nurses and janitors in the hospital but I always ended with "If they had to mess up on one thing I'd rather it be on talking to me." 

And I do mean that.  We're told this surgeon is the best and he insists on handling the difficult surgeries.  I may have been told it was routine because he came into it knowing the IV's would be an issue, the two prior transplant surgeries would create havoc and the blood would be everywhere.  He knew he had a good matching kidney(*) and basically, everything that happened was in a sense "routine" under those circumstances.  Fucking know-it-all:)

The * above is to note that it was this surgeon who called off a potential transplant several months ago because he felt it wasn't a "good enough match".  We received a phone call at 4 AM that a kidney was available that might go to Yvonne and at 8 AM it was indeed going to be hers and as we were in a taxi heading into the hospital driveway we got a call that this surgeon said "nope" and we went home to cry.

Wow... I get all worked up just writing about it.  Thank God he is so skilled in the OR and thank God for Cousin Kathy!

OK. Leaving now to pack up Yvonne and bring her home. I'm hoping the arrival of the heads of state of every country on the planet into my neighborhood doesn't cause any traffic jams.  Ha!  Yvonne just told me that FreshDirect cannot deliver to us until they all go home...  That's life in the Frozen Zone.

Breaking News... She's comin' home!

Yvonne called me after the doctors came to see her and they said she is going home today!

The exact time is still a mystery but I'm thinking mid to late afternoon. (you know, that 4-5PM period of no cabs...)

I know Yvonne is feeling OK because she gave the surgeon some shit for not telling me what was going on and not coming to see me after the surgery.

The end of the hospital stay does not mean the end of the blog.  I'll probably keep it going until Yvonne returns to work.  Sure you can call Yvonne at home and email, Text, Facebook, etc... but it's better if you read the latest news here first so she doesn't have to repeat it over and over.

I'll update again when she gets here (through the UN General Assembly traffic).

Could this be the last night here?

I really didn't think this was possible.  But we keep hearing that Yvonne may go home on Monday.

She has been getting an IV treatment at noon every day that has run over 12 hours but we are told that since she tolerates it now, they will start it earlier and run it faster and be done at a reasonable time to go home.

I should say that Yvonne graduated to solid food a few hours ago. Yes, a tray showed up with hospital salmon! Not as good as my dinner last night, but still she enjoyed her first meal in 4 full days.

The fevers are a thing of the past, normal heartbeat, pressure is good, electrolytes are OK and there is plenty of urine in da house!  Hurray for urine!

The Monday discharge plan is still awaiting approval by the doctors that get the weekends off.  So stay tuned for an update tomorrow morning!

Yvonne had by far her best day yet.  She had 10 visitors today that spaced out nicely over an 8 hour period without me coordinating that.  Who knew that was possible?  LOL

Sunday morning report

Yvonne was my wake up call today. Her voice sounded the strongest yet and I was encouraged.

I had a conversation with a nurse in the hall yesterday about Yvonne and when she might go home.  To my surprise she said Monday.  She later backed off when I reminded her that the surgery was extra difficult but still she thought Yvonne's situation dd not look like anything that might keep her much longer.  I thought about that and decided that today was the key day.  If there was even a possibility of leaving Mon or Tues we'd need to see dramatic improvements today. Like eating.

And that phone call was good and we may indeed have that! She was already back to having clear fluids, which is not quite bacon & eggs, but it's a start.

Some more random thoughts....

IV problems:  This has been a big issue since the surgery started.  Yvonne seems to offer no good spots to hook up an IV line.  Her blood vessels have been beat up over the past 20 years with various IV connections and what's left behind is narrowed by scar tissue that the vein clots as soon as they get the line in.  She had one in her neck and that one got messed up yesterday.  They seem to need 2 since the meds are coming in one and blood is being drawn from the other.

Rapid heartbeat: This popped up yesterday afternoon during the Yankee game.  I don't think it was related. The cause was not obvious but the IV meds were blamed and the rate was slowed down and the problem went away.  That's something to monitor today.

Blogs & Facebook posts:  It isn't easy to know how many people see my Facebook posts but the number of friends that have commented or "liked" is higher than anything I've ever posted. 85 "likes" and 76 comments on the original post and that number keeps climbing.  There have been virtually no comments on the blogger site (this) but I can see that over 1,000 of my entries have been read. Wow!! I knew close family members would be reading but it seems to have gone well beyond that.  And while it is digital communication from afar, I can tell you it helps. It seems any hour of the day that I post something I immediately get some sort of feedback from somewhere around the world.

Brother Pete came to visit:  Yvonne's brother stopped in last night to see Yvonne.  I took the opportunity to let them speak privately and I walked a few blocks, sat at an outdoor restaurant, ordered a grilled salmon w/broccoli & potatoes and a glass of wine.  It was nice to eat something other than deli food! No it wasn't raining at that point:)

Bites, Bowels, Bladder & Blood

We keep hearing references about how difficult the surgery was.  I' m super disappointed in the fact that the surgeon has not spoken to me at all.  Yvonne saw him on Friday and I'm sure he doesn't work on the weekends so maybe he'll stop in on Monday when I'm here.

The most recent reference was from another doctor who was in the OR saying that when you go through such a difficult surgery it isn't unusual for bowels to not work normally for a while.  I can't dive into all the details (Yvonne insists on some privacy!) but the bottom line is that until the bowel reboots Yvonne will not be fed.  Anything.

Yesterday they allowed her to have clear fluids but today they cut that out and all she has had is ice chips.  Yum.  Her last solid food was 72 hours ago.

The blood levels are all good but in particular there is one number that tells them that the kidney is working.  Creatinine should be 1.0 with a normal functioning kidney.  Kidney failure is around 8 or higher.  The earliest reading in Recovery was 5.8 which was unexpected but it was in the 3's yesterday and most recently 1.7 which is awesome.

The amount of urine the kidney is cranking out is measured very carefully.  It started off with an impressive volume and then slowed up but recently it picked up again.

I may have lost count but fevers have come and gone either 3 or 4 times in the past 2 days.

All of this I hope explains why I cannot post each little thing that happens as soon as it happens.

OK, some miscellaneous things:
Flowers: I may have been mislead or maybe there isn't total agreement. I asked if people could send flowers and was told yes.  But as a few arrived a nurse said flowers are not a good idea.  So maybe they no longer ban them but they also don't encourage them. The ones Yvonne got are beautiful by the way...

Kathy:  she did check out of the hospital as scheduled. She stopped in to see Yvonne (which was when I posted the photo on FB)

Me:  a few people expressed concern about me.  Thanks. I'm OK.  I haven't missed a meal:). I spend a lot of time in the hospital but I have a comfy chair by a window with a fine river view, cable TV, free wi-fi and a convenient outlet to keep all the toys charged up.  Two 24-hr delis provide the meals and an entire fleet of taxis gets me to and from when I don't feel like walking the 1.5 miles home.

Period of Adjustment

I got off the phone moments ago and Yvonne reported that another fever of 103 came and went.  This will likely continue for a few days I'm afraid.  The medicine she is taking is essentially killing her immune system so it doesn't reject the kidney.  The fever is a common side effect that takes place while this is going on.

Of course I take the position that the fever could be from other causes and they think it is the expected side effect.  I discussed that with an arrogant doctor who dismissed my concerns saying that if they had grossly messed up the surgery the infection would not have caused a fever this quickly.  Me thinks he is a bit too defensive as I merely suggested that fevers come from other things and was asking how they'd be sure what caused this one.

As long as I'm on the topic of lowered immune system I may as well say a word about visiting.

• It's probably best to check with me before planning to see her.
• Don't come if you are sick.
• Don't come if you have been around anyone who is sick
• She isn't hugging or kissing anyone. (yes, even me).
• Use the disinfectant that you see on the wall before entering the room.
• Unlike the past years they no longer ban flowers but the space for them is quite limited.
• Yvonne was not yet eating solid food so that won't work now either.

It's sort of a given that once you get an organ transplant and a lowered immune system that you will get sick. But this is not something you want to deal with while the kidney adjusts to the new surroundings.

Because I expect the situation to change by the hour I'm probably not going to document every change.  Expect maybe one or two updates each day.

Lastly, I heard that Kathy is going home this morning. I need to stop typing and head up there to see her before she goes.  Bob went home last night to get his car and is probably already driving into the city to pick her up.

Night 2

An interesting day for sure. Yvonne started good, got better, felt worse and now seems to be comfortable. She saw her nephew Dan and niece Emily (via video chat) this evening as well as a friend from dialysis who stooped in after his treatment.

A fever came and went which is believed to be a reaction to medication that she is getting.

Yvonne is going to go for a walk now and then settle in and watch the Yankee game. Almost sounds lie a normal night:)

There will be bumps in the road

Yvonne looked and sounded great this afternoon.  I stepped out to pickup a sandwich and returned 15 minutes later to find 2 nurses around the bed arranging blankets and discussing a fever.

Damn it changes fast.

The fever is 101,4 and it just "appeared".  I think it is a common side effect of the drug being used to lower her immune system.  But really it could be from any other cause as well.

The afternoon was pleasant.  Another dialysis nurse named Rocky (not to be confused with a certain Siamese cat with the same name) came to say hello. Yvonne's dear friend Millie dropped in and so did Cousin Kathy!

This is the first time the Kidney Sisters were together other than a very brief wave as Kathy was leaving Recovery.  I took a photo in their matching hospital gowns to remember but I think I will get treated badly if I post it anywhere.

Checking in on Cousin Kathy

I stepped out of Yvonne's room for an hour to visit Kathy. She looks good and seems to be on course to be discharged tomorrow. While I was there, Yvonne's Aunt Carmen and Cousin Freddy (who flew in from Puerto Rico) came to thank Kathy for the gift she has given Yvonne.  It was a great moment and I was fortunate to witness it.

Kathy and Bob said they feel like they are now part of another family and we all agreed that we were one.

So cool!

Really!? Who knew...

She probably thought I can't handle the truth.  Why else was I told by the PA that the transplant was "routine" when I now know it wasn't?

It seems like the operation was rather difficult and there was substantial bleeding which caused the low pressure and required a transfusion in the OR, another in Recovery and another here this morning. This explains why Yvonne was in surgery so long and recovery even longer.  

We heard from a nurse who was in there watching the transplant that Yvonne's intestines were pulled out and were next to her on the table during the procedure.  It seems that the prior transplants cause some tissue to fuse to another requiring a bit of cutting and I guess a lot of bleeding.

I couldn't help but think about times as a kid when I'd take apart a radio and then reassemble it only to have one piece left over that I had no clue where it belonged:). I joked about this when a nephrologist was here and he said that piece is usually the appendix.

Goooooooood Morning!

Well don't I feel refreshed after a .... Never mind. i could use 5 more hours of sleep!

But it's a new day.  I've been awake for 90 minutes without a making blog entry:)  Seriously I hope I didn't overload you with updates yesterday.  But I guess you had the chance to share the frustration as things moved so slowly.

Anyway I spoke to Yvonne around 8 AM and she sounded pretty good.  Her voice yesterday was very strained because the breathing tube inserted down her throat during surgery left her feeling very sore and dry.  And she wasn't allowed to drink anything making it that much worse.  So the fact that she sounded OK on the phone is very good.

Today will be a full day for us of talking to doctors and getting a better idea of her recovery situation.  My memory from last time is that she should not be around many people because that only increases the odds of being exposed to bacteria, virus, etc..  Certainly anyone sick and coughing/sneezing should stay far away.  Her immune system was severely suppressed in order to prevent rejection of the new kidney.

I don't know how much time Yvonne will have to answer you but I'm sure she'd love to get some emails, FB messages or text messages today.  I would ask that you not call her since it could get overwhelming.  You can always text her and ask her to call if she can.

MISC Notes:
Thanks Greg for researching where the Blogger setting for Time Zone is!  I think all my posts now show the correct time.

Kathy plans to visit Yvonne today. They are in different wings on different floors but I think it will happen.

We heard some mention yesterday that the surgery was indeed more difficult than expected. "Technically challenging" is the term I heard.  I hope to see someone from the surgery team who can explain that in more detail.

Bed time

I arrived home at 2 AM.  Yvonne checked into her new room and was being quizzed by the night nurse on the floor as I slipped away to get some sleep.

This is not the time for deep thoughts on all that transpired today.  But maybe I can compose a few comments on the more obvious ones.


Wow.... my cousin Kathy is an amazing person.  I have always known her to be kind, giving and caring. But this one was hit way out of the ball park. Home Run Kathy!!

And then there is Yvonne....  19 YEARS of dealing with serious illness and most people who she comes in contact with don't suspect a thing.

Two very special people who now share a very special bond.  God bless both of them! AND THEIR KIDNEYS!!!!

The 20th hour

This will have to be my last hour here today.  I'm so tired I can't even think of anything to write about.  We had a shift change and havent even bonded with the new nurse...

But as I started writing this a renal doctor came by and I think just said Yvoone can move on to a regular room. Ten hours in Recovery seems excessive but really they know that this is Yvonne's 3rd time down this path and I think they want to be very sure of each thing they do so since her pressure was a little low they just kept her here where the supervision is almist 1-1 until they got the level they were looking for.

Hoping to move to new surroundings soon....

8PM - midnight

Yes, a long day... And it is not over.  Nothing bad is happening so relax:)

I have some time to fill so let me catch you up on things.

I went out to a deli to get some food and took it up to Kathy's suite to eat up there with her and Bob.  Yes, I said suite.  It seems organ donors are a special type of patient.... Hospital Royalty?

Kathy has a single room in the corner with windows on 2 walls, space for a King-size bed and a mini-bar.  OK, just a mini fridge:)

But she was in real good spirits, ate some food and was planning to do a little walking later this evening.

Dialysis Nurse Gloria found her way to see Yvonne in Recovery on her break and now came up to check in on Kathy.  What a sweetheart!

At 9PM I said goodnight to Kathy and Bob and headed down to visit Yvonne.

She was more alert and talkative and we started talking to her nurse Kristen about getting her into a regular room.  It seemed we were close.  But nope.

The red count was low so a transfusion was called for.  This seemed to take hours for some reason.  But it did give us time to tell Kristen about how we met, exchange nail polish tips (Yvonne), show her pictures of our cats and give her a Miramar card (Phil). Along the way I was given a pass and allowed to stay beyond the 30 minute visitor period. I'm in my 3rd hour now!  I promised to behave and Kristin said I could stay.

We watched the Yankee Game end on Slingbox (iPad) and now Yvonne is sleeping.

Her pressure is a little low and they are expecting that to go up into the normal range with the transfusion and then she will go to a room and then I will go home.

7PM visit

There will be a 9 PM visit  soon.  At 7 i decided to let Yvonne talk to her Aunt Carmen on the phone. I spent the entire 30 minute visit trying to figure out how to make that happen.

There was no cell signal so that killed the initial plan.  I then recalled i had just installed Skype on my iPhone so I could call home from Chile last month. Great! Except that it insisted on dialing as if it was an international call and Aunt Carmen's 646# was calling New Zealand instead!

Well I eventually got it connected and the nurse said cell phones are not allowed in there.  But she was impressed with my ingenuity and let them talk on the phone for a few minutes. 

Yvonne saw her surgeon who said all us well

Time Zone is off

By the way, you may have noticed my updates are not showing the correct time. If you have a chance to research how to set teh time zone for Blogger send me an email so I can fix it.  I seem to be on Pacific Time.

The 7 PM visit is coming up soon

I was just reminded that it doesn't always go as planned

I was sitting in the family waiting area just reading emails and typing replies when the silence was shattered by the anguished screams of a family that just got the news that their loved one died in the operating room.

I only know he was 19 and his family is devastated...

The 5PM visit

I left Yvonne around 4 PM after seeing her for a few minutes.  My next chance was at 5 PM and after that 7 PM.

But I suddenly realuzed I never fed the cats and I had to get home and back in 1 hr!!!

This is normally not that hard unless that hour is 4-5 PM. For thise unfamiliar, that is an impossible time to get a taxi!  And if you do get one you'll just sit in traffic. All cabs drive around with "off duty" lights on but still I was able to talk two of them into taking me home and back in time for the 5 PM visit.

Yvonne was more alert this time and we were able to have a better conversation. She saw her nephroligist who gave her the thunbs up. She also saw Kathy as she was being wheeled out of Recovery and up to her room

She found out she cannot eat or drink at all today so she had to settle for a few ice chips instead.

She is uncomfortable because she is pretty wired up and can't move around. Just lay still on her back. One IV is in her neck just below her ear.

She may still be under the anesthesia somewhat because she didn't yell at me for not feeding the cats.

Getting tired of this...

***** this actually posted before the last one but technical error kept it as a draft ******
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I still haven't been allowed to see Yvonne!  I was told an X-ray, then told an ultrasound, then told doctors were with her.  I'm surprised she didn't tell them she wants to see me.

I don't think there is a problem other than the fact that I'm not happy...

Just got a chance to see her:)

As soon as I posted that last update i was allowed to see Yvonne.  She was concerned that it was so late in the day and wondered if something was wrong.  She saw doctors whispering near her and felt even more like there was a problem.

But as far as I can tell there is no problem.  She will remain in Recovery for at least 6 more hours.  I can see her every 2 hours for a few  minutes. Of course I'll post updates.

PS. I also saw Kathy who seemed to be OK too.