Happy Birthday Daniel and Sophie!! and A DAMN GOOD KIDNEY

 

Daniel and Sophie in Minnesota in November

So i was feeling pretty bad about this blogging thing – or I should say my lack thereof.  I would like to do it more, but by the end of the day after working full time-ish and taking care of two toddlers, it is all I can do to grab a little exercise, some dinner, and crash in front of the TV. 

But – I did wanted to make a HUGE call out to my little ones who are TWO today.  Which means that two years ago today at about this time I was in the hospital and getting ready to crash and burn.  A little freaky to contemplate actually.  When I think of it I do get a little choked up – not because I was sick and yada yada yada, but because of all the love and support that I recieved and how many people went out of their way to help me.  It is something I will treasure for the rest of my life. 

The kids are doing great.  They are growing by leaps and bounds.  They take music and swimming and we are going to start tumbling soon.  They are a little late in talking which leads to some frustration.  Sophie has some words and has entire conversations with herself; we just can’t understand what she is saying.  Daniel doesn’t talk but he loves music and dancing.  We have taken a few plane trips and are taking a big vacation in December to Cancun.  Four hours alone on a plane with them.  Gulp.  We are going to need Valium and not for them. 

As hard as it is to believe, Brutus has now lived with me for over a year.  I had my one-year check up visit last month and the doctor could not have been more pleased.  Based on my creatinine (1.28) and the fact that I either had one teeny weenie episode of rejection that responded within 24 hours to steroids or it wasn’t an episode of rejection at all, he placed me in the top 20% of transplant recipients (have I mentioned I am a bit competitive?) That means there is a reasonable likelihood that this kidney will last me at least 15 years.  That doesn’t seem very long at present but I will keep my fingers crossed and hope for the best.  Rejection is always a concern and I asked the doctor how likely it was that rejection could be triggered if I missed a dose of meds.  He suggested that I had probably already missed doses – actually, no.  I may have missed one early on, but thanks to my trusty iPhone I can count on one had the times where I was more than 30 minutes late with a dose of meds.  He thought that was probably one reason why I was doing so well.

Other than that, life is pretty much, well, life.  I hope everyone had a wonderful thanksgiving and wishing you a wonderful holiday season.

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Going Home

I had the best of intentions of updating this blog at least every few days while on our wonderful Umbrian vacation. Unfortunately as I sit here in the Swiss Air lounge in Zurich I have failed. But better late than never. We had a wonderful vacation. Last Saturday I met Caz and Sally at the rental car agency in the Rome airport and we got our little Fiat and headed north to Umbria. Our destination was a fabulous house in the town of Molina Vitelli, just outside of Umbertide, that Caz had won in a charity auction.

After about 2 hours braving the Italian roadways, which would be wonderful if not for Italian roadsigns and Italian crazy drivers (or to be fair, maybe those were all tourists), we stopped for lunch in Perugia. Basically all of the cities in Umbria and Tuscany are at the top of a hill or mountain with thick stone walls around them but Perugia is truly in a class by itself given that it took 4 very long escalators (think DC metro) to get to the top. They also had some sort of laser beam exhibit thing showing, where if you ran something through the beams of light it made sounds like the strings of a guitar. Very cool.

We called the woman who was going to meet us at the house and she told us good luck getting out of Perugia. Not a very auspicious sign! Fortunately after going around in circles for maybe 15 minutes we did make it out of there. We stopped at the Coop grocery store in Umbertide and got enough provisions to last us just in case the end of the world did come this week and we had to stay for a month or two, then headed for the house.

The house was amazing. Located high on a bluff overlooking a valley, it was 3 bedrooms, 3 bathrooms, a beautiful Italian kitchen and lots of balconies and patios. we settled in and made some pasta for dinner and slept very well that night.

The next day, Sunday, it rained. We slept in then headed out for brunch – you may notice a recurring theme here of food and drink. You have to love a country where the wine is less expensive than than the soda! the brunch was in a local trattoria that served organic food mostly from their own garden. It was fabulous. We sat in the restaurant which was all windows on one side drinking cappuccino and watching the rain come down. That afternoon we hung by the house drinking wine and tea, reading books and watching the rain. That night we had arranged for an Italian chef to come to the house and cook us dinner. One of the highlights was a pecarino cheese served with homemade sweet and sour figs. Mmmm!

The rest of the week the weather was pretty terrific, sunny and high ’60’s and ’70s for the most part. (sorry mom weather in denver couldn’t have been worse!) We developed a pretty ambitious itinerary. On Monday we went to the town of Gubbio where Sally and I rode in a little furuncular, basically a chair lift in a little cage high up the mountain. The views were amazing. We encountered what would be one of our little issues on the trip which was the Italian schedule. Being that we were on vacation for the most part we were in no great hurry to get out in the morning. We would amble out around 9 or 10 am, stop somewhere for coffee, and get to our destination around noon ready to see things and shop. Well the Italians shut things down at noon to 2:30 so they can have lunch and a little siesta, so we ended up doing mostly window shopping. Then when we were ready for lunch around 3:00 or so, the lunch places would all be closing. I am sure they thought we were really messed up tourists.

So over the next few days we toured most of the highlights of rural Umbria and Tuscany. Having a car was the only way to go to see these places and we put some serious miles on. Fortunately our little Fiat got good mileage since gas is EXPENSIVE in Europe! We went to Montepulciano, probably our favorite town, had a fabulous dinner in Montone (thanks to Chris for that tip), and Caz and I went horse back riding one day near Citta’ di Castello.

On Wednesday Jamie and his friend Aaron joined us. We had a fabulous dinner cooked for us in the house on Wednesday and visited Todi and Orvieto on Thursday. Note to self, never try to park in Todi. The Duomo in Orvieto was unbelievable. All I could think of was how it would have looked to a peasant in the middle ages living in a hovel with nothing. It you have not, you must read Pillars of the Earth.

Our last day before we had to drive back to Rome was probably our best day. We got up (for us) relatively early. Jamie and Aaron made us a fabulous brunch and then we headed to Cortona. The town was great, steep as they all are and incredibly beautiful. Hopefully I will be able to figure out how to post some pics here from my iPad! We then headed to the town of Ossaia and visited a little winery called Il Castagno (wine is labelled under Fabrizio Dionisio) for a fabulous wine tasting. We sat among the vineyards drinking a new Rose’ that isn’t even on the market yet, as well as two Sangioveses, one of which just won a bronze medal from….. can’t remember who but it was a great wine! They gave us a huge spread of bread and cheese, salami and proscutto as well. It was amazing! But wait, not done yet! Then we headed to Il Falcionere, a place Caz had found that is a hotel, spa and winery, where we had massages and hung out in their hot tub with borrowed swim suits (don’t ask) watching the valley. They had amazing wine as well and I bought a bottle to take home as well as some of their EVOO. But wait – not done yet! On our way home, we stopped for dinner at Il Falconierie’s sister restaurant in the town of Montanare, called Locanda del xxxxx. They were having live music with a ’70s theme! We had appetizers and Pims cocktails on the patio and then went in for a terrific dinner. Unfortunately, we didn’t realize the live music would be essentially us but I am sure the other dinner guests really enjoyed us singing through our entire repertoire of ’70s songs. 🙂

Yesterday our week in Umbria was over and we had to head back. We stopped in Assisi on our way back to Rome and were wowed by the basilica there.

Last night we returned the car and just hung in the hotel too tired to head into the city. Just to show what a small world it is, at the hotel we ran into Bill and Joanne, whose flight to Denver had been cancelled. As Neal said, all roads lead to Rome!

Today I had to catch a ridiculously early flight to Zurich, where I am now waiting for my flight to DC, then to Denver. Not the most direct flight home but I got here and back on miles so the price was right. I can’t wait to see the babies who I am sure have grown 2 inches in my absence and have a new mouth of teeth! A huge thank you to my parents, Vilma and Ellen for watching them while I have been gone. I have missed them but jeez do I love to travel!

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Rome

I have a terrific life. I love my children and I love being a mother. I have a good job, amazing friends and a wonderfully supportive family. But there is a part of me that is only happy on the road.  It is here that I feel most myself, most at ease and frankly the most joyful.  I have friends who have this same wanderlust – you know who you are.  

I am in Rome.  I have been here for the past day and a half by myself, and I can’t tell you how happy I have been.  There is something about being on your own in a strange city with no responsibilities or obligations, no one else to please, no one to take care of, that is freeing like nothing else in the world. 

I flew in yesterday on United.  I used a mileage ticket to fly first class, although I have to tell you, first class international on United is mediocre at best – they are where coach class was on many Asian airlines a decade ago!  I was supposed to meet my friend Kathleen but because her mother is sick she wasn’t able to join us.  

I took the train into the city and found my hotel, a very nice (if expensive) place close to the main train station. After relaxing for a bit and cleaning up, I headed out and walked the length of the city, seeing the Parthenon, see pics, and many other sights, ending up at the Piazza Navonna where I sat in a cafe and got some dinner.  I walked back via the Roman Forum, which was beautiful at night. 

Some Ambien and a good  night sleep later, I got up and had a fabulous breakfast at my hotel and started out for the day. I had downloaded a Rick Steves app into my new iPad and had loaded several Rome waking tours.  Today I walked the Jewish Ghetto, Traverne, and about 10 more miles of Rome, ending up at the Coliseum. Since y feet were dead at this point, I took the subway back to my hotel. I rested for a while and then had wonderful dinner at a restaurant I found on my “trip advisor” app. Anyone who thinks you can make do without technology any more has not traveled recently or seen all the wonders technology can provide!  

Closing with my favorite “lemoncello” brought gratis by the cute Italian waiter, I am struggling to write this update before collapsing into bed. 

Tomorrow I will meet Caz and Sally at the airport and we are renting a car to drive up our wonderful house in Umbria. 

I couldn’t do this and wouldn’t be here without Brutus. The past 2 years when I couldn’t travel much or leave the country have been far harder than I would have ever expected. Thank you Sarah and Brutus and a very happy 43rd!!!  

Passage of Time

It is amazing how fast time goes.  Sixteen months ago today this all started for me when Daniel and Sophie were born and my kidneys went kaput.  I am also just three weeks shy of my 6 month transplant anniversary which is a major milestone.  Most days I almost forget there is this aspect of my life and history.  I was reminded yesterday when I met a resident in clinic (where I was being a doctor, not a patient) who had heard my story and told me how much they had all been pulling for me, even though they didn’t know me.  It was so nice, although I confess at first I didn’t realize what she was talking about.

I don’t identify myself by this medical event although I suspect people think of it when they look at me, especially those who I don’t see often.  This condition doesn’t define me; those of you with chronic diseases or who have had major acute illnesses may relate to this although I would be interested in hearing if you have a different perspective.  I was thinking about this very issue recently when I saw an acquaintance whose family had suffered a catastrophic event.  I think about it every time I see him, and I wonder if he thinks about it all the time (I am sure he does) but if he also wants to live a normal life without having it be top of mind 24/7.  It is something to ponder and consider when talking to folks with major medical issues, especially for clinicians.   

Brutus is doing pretty good overall although creatinine was a little high this week.  I will get it rechecked on Friday.  I blame it on OH State losing in the NCAA.  Sarah, what happened to your boys? Every time OH State loses my creatinine goes up.  At 6 months, hopefully the prednisone will come down and I will drop off some of the other meds. 

Kids are doing great, walking, chatting although not using real words yet, and getting in to everything! Thank god for child proofing. They are getting through their second batch of teeth and learning to use utensils (see photos of practicing using spoons with creamed spinach – NOT a good idea.)  Daniel loves books and music, Sophie is my little adventurer – she loves flying high on the swings and being tossed around in the air.  They love Bingley the dog and a favorite activity is throwing him the tennis ball and then break into peals of laughter when he chases it. 

We are taking our first plane trip alone (i.e. just me and the kids) going to Minnesota for Passover.  Should be interesting! I hope to see some of you when I am in town.

Way to go Brutus!

As Sarah mentioned in her great blog post yesterday, we have just crossed the 4 month milestone. Yeah! My labs today are really good – creatinine is 1.13 which is actually in the

Sophie at 14 months

Daniel at 14 months

normal range. My life is pretty much completely back to normal (or at least what passes for normal when one is a single mother of 15 month old twins!) We are gradually decreasing the immunosuppressant medications. My big concern is getting my prednisone as low as possible. I will be on a low dose for the rest of my life unless a great new trial comes out that shows how to safely stop it. As I have mentioned before it is a lifesaving drug but has lots of side effects. For me the big problem is weight gain. I like to eat way too much as it is, and the prednisone takes away the sensation of fullness so I have gained 15 lbs since the surgery – yuck. I think I am going to have to join Sarah on Weight Watchers. The round face (moon facies) that I had early on due to the prednisone has improved as my dose has decreased but my neck is still pretty jowly. The only other side effect I have from the other medications is a burning sensation in my fingers and toes when they get cold – called a neuropathy. It is not too bad but I am looking forward to summer for many reasons; my sympathies to those of you living in Minnesota.

It is interesting to live life immunosuppressed. So far I have not had any problems. I am at increased risk of what are called “opportunistic” infections – those organisms that attack the immunosuppressed host, so monthly I get a breathing treatment with an inhaled antibiotic called pentamidine to prevent PCP pneumonia. For those of you history buffs, you may remember that this was the organism that was causing pneumonia in gay men in the early 1980’s and led to the discovery of HIV. I was told that I should avoid sushi and raw fish and meat in general – like that’s going to happen – but at least I will make sure I am only eating it from a reputable source. A girl has to draw the line somewhere. I do try to make sure the kids stay healthy. I took them to the Children’s Museum for the first time this weekend. They had a great time but I cringed every time they put a toy in to their mouths (which was about every second).

The kids are doing great – walking, running in to everything, chattering up a storm although no words yet. They are teething now, which is not pleasant. Daniel is soaked with drool – imagine a steady stream coming out of his mouth, and poor Sophie just hurts – she will be fine one minute and crying the next with her fingers in her mouth. We are going to take the plunge and do the first big trip this weekend. I am taking the kids and Vilma, the nanny, to Phoenix for a few days. I have a meeting there next week. My parents and my aunt and uncle will be coming as well; my cousin who lives outside of Phoenix will also visit with her son, the twins’ second cousin. Pray for warm, sunny weather in Phoenix!

My First Bath

So tonight I took the first bath since I delivered the babies 14 months ago.  I am actually not a huge bath person – never seem to find the time, but the fact that I was unable to take a bath due to my dialysis catheter – was quite irritating and a constant reminder of the lack of normalcy of my life.  The catheter finally came out a few weeks ago, once it appeared like things were stable and I was not going to need it, and I am healed up enough to finally have a soak in the tub.  It was lovely.

Life has indeed settled into a new normal.  I am doing well; Brutus is performing and my creatinine has bounced between 1.1 and 1.35 or so.  Of course every time it bounced up into the 1.3’s I have a panic attack but it has behaved and bounced back down after that.  We have dropped the prednisone down to 10 mg, which is great and I am hoping some of the side effects – such as my round face, fat neck and increased weight, will get better soon.  I had a little trouble with my white blood count (WBC) – it got very low, into the neutropenic range, putting me at serious risk of infection.  We tried stopping some of the medicine first, like the antiviral pill I was on prophylactically, and when that didn’t work I got a shot of Neupogen, which is typically given to cancer patients after chemotherapy.  That is good stuff – my WBC rebounded within days and is now much better although something we will need to watch closely.

So what does this new normal look like? It is BUSY! On a typical day, I wake at 6 to shower and dress before the babies get up.  They wake at 6:30 or 6:45 and I spend an hour with them getting dressed and playing.  Vilma, their nanny who lives with us, starts work at 7:30 most days, so I bring them downstairs and she feeds them breakfast.  Then I finish getting ready and if I am not hitting the road, I head in to the office.  I work all day and get home by 5:30 when Vilma is off. More play time, baths, bottles and bed by 7:15 or so.  Then I clean up their tsunamis, and go down to the basement to exercise – that has been pretty consistent for the past few months, which I am really happy about.  Dinner at 8:30, then maybe a little work, and then I go off to bed.  I have also been traveling a lot – more than I expected frankly.  I have been on the road 1-3 days most weeks.  All of which doesn’t leave much time to blog.  I am sure Sarah is wondering if I will ever blog again! But here I am and will make more of an effort moving forward.

The kids are doing fantastic, walking and although not taking yet certainly making lots of sounds.  They are interacting a lot more and it so cute then they make each other laugh!  I will try to post some videos tomorrow.  It was great to see Sarah in Denver this week although I am not sure she properly aappreciated our -8 degree weather!

Happy New Year and ALS

Happy New Year!  Hard to believe that 2010 is almost over but i for one will not be sorry to see it go.  Please join me in a glass of champagne on new year’s eve drinking to a better 2011!  

I also wanted to send my good wishes to my father who was hospitalized early this morning for – wait for it – kidney problems.  He is at Abbott Northwestern in Minneapolis and sounds good – getting a bunch of tests and desperate to get out of there.  Hopefully he has just been too good taking his diuretics.  Water pills like Lasix make your kidneys pee out salt and water even if your body doesn’t have any to give.  It is essential for congestive heart failure  but can lead to difficult balancing between the heart, the body and the kidneys.  Truer words. 

I would also ask you to take a few seconds to read the info below from a colleague (Al Lewis for those of you in the health plan world) who is working to increase funding for research into Amyotrophic Lateral Sclerosis or ALS (also known as Lou Gerhig’s disease).  The wife of a dear friend has this terrible, progressive, debilitating disease.  There is no known cure.  This (along with HUS and TTP) is on my top 10 list of conditions not to get.  If you can take a minute to support this effort, i would appreciate it.  Happy New Year.  Lisa

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Subject: plz take 30 seconds (no money) to support ALS research in a unique and powerful way

Dear Friends of Al:

I am trying to raise money for ALS research, but I’m not asking you for money. All I am asking is that (for reasons described below) you go to www.whytheheck.com (my blog) and “like” the facebook fan page or put a comment on the blog itself, and then maybe forward this email as much as possible.

This free and fast simple step will help more than you could imagine as I try to get to 5000 “facebook fans” for my ALS advocacy project.

Some background: As a few of you know, I lost my second wife to ALS. (The whole story is on the blog now.) I would like to convince the Yankees to raise money for ALS research simply by selling Lou Gehrig #4 jerseys for maybe $100 apiece, and donating the profits to ALS research. Given the reaction from the 2100 people who have found my blog and “liked” the facebook page — and in many cases added their own stories of loss — the Yankees would sell a ton of ‘em.

This is the opposite of most fundraising efforts in that plenty of people are ready to contribute but they don’t have anyone to contribute to, yet.

The problem is that the Yankees don’t return emails from the general public. This is probably not because they are an Evil Empire as we Sox fans used to believe before we started signing all the free agents, but more likely because only about 0.0001% of those emails would contain anything worth reading. However, if I can get 5000 people in support of this idea, a PR person has agreed to approach them on our behalf.

The ironic thing is that we are not asking the Yankees for a favor. This is very much in their interest too. They’d have people all over the country wearing these jerseys, and almost everyone touched by ALS (about a million Americans have been touched somehow), would become Yankee fans. For instance, I would never wear a baseball jersey with someone’s name on it, and I HATE the Yankees, but both of those opinions would change overnight if they did this.

If you are one of the people touched by ALS, you could up your commitment to this worthy project by doing 1-4 other things too:

(1) Don’t just “like” the facebook page or the blog – put a comment on or add a photo or a remembrance;

(2) Write a polite note to dcarabello@yankees.com and tell him what a good idea you think this is;

(3) If you know any influential person in baseball or the sports media or New York media, forward this note to them;

(4) Many of you are in pharma — if you know of a project seeking ALS funding, send this to them;

(5) You could also listen to WBZ-AM 1030 January 3 in Boston between 9 PM and 10 PM at 617 254 1030 (I am doing an interview for this project and my book), or listen online at http://boston.cbslocal.com/ and call in when the ALS subject comes up.

That’s it. Although participation in this project should be its own reward, I would like to express my own gratitude in a unique way. Read the intro to my book at http://www.whytheheck.com/downloads/whytheheck-intro.pdf and if you like it and participate in the above project, you can have the entire book electronically, free. Just ask.

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