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Winner’s Weekend Part Duex

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Well the Friday of Winner’s Weekend was a very long day for us.  It was a fantastic day and an amazing visit to the Dream House.  It was tough to leave but it was getting late and we knew we had a big day the next day.  We finally got back to the hotel around 10:15 PM and having missed our dinner reservation at Norman’s we headed upstairs long enough to change clothes (mainly shoes), and then meet downstairs in the lounge for a drink and dinner.  We wound up having a variety of appetizers and drinks.  We finally headed off to bed and I barely remember my head hitting the pillow.

Saturday we had to leave the Ritz-Carlton and transfer to a Hampton Inn for our day at Universal.  Originally thIMG_3428ey had us scheduled to fly home on Saturday but I asked if we could stay to do Universal.  They agreed but there were no rooms at the Ritz so after finding no rooms in any of the Universal Hotels, I made reservations at the Hampton Inn.   We headed there and because it was so early we had to leave our bags at the desk since we couldn’t check in yet.  We had like a five-minute wait and then boarded the shuttle to Universal and were at the Park by 10:00 AM.

IMG_0453We were mainly interested in the ‘Wizarding World of Harry Potter,’ primarily because my daughters are huge fans and my wife and I are fans, while not as intense as Kate and Carolyn.  Kate goes back to reading the first Harry Potter book before it was published in the US.  My niece and nephew brought a copy back from England and Kate had heard about it so she started the series.  I think the experience surpassed their expectations.  We started in the Diagon Alley side and they had a great time.  I couldn’t participate in the rides due to the location of my new kidney.  It is in the front and slightly below and to the right of my stomach and the nephrologist told me to avoid the rides since the safety harness, when secured, IMG_0470would press pretty intensely against the kidney.  Considering the alternative, I do not think I missed anything as compared to having a working kidney.  While they did the Escape from Gringotts ride I scoped out the rest of Diagon Alley which included lots of shops, and I saw 3-4 mini shows that were very interesting.  I also spent far too much money on souvenirs and considering how much it cost just to get into the park, they should have given me the stuff!  After having our fill of Diagon Alley we headed to Hogsmeade via the Hogwarts Express.  It was a cool ride that I could do.  We had a nice lunch at the three broomsticks.  I wasn’t feeling well so I had a salad with some Cornish Pasties and my problem tuned out toIMG_0499 be that I was low blood sugar and just needed food.  After lunch we headed to Hogwarts Castle and they all did the rides there while I explored Hogsmeade and at one point wound up taking a wrong turn and entered The Jurassic Park section of the park.  There was a lot of shade in this section so I took a break and rested.  I also had to log onto Southwest and register for the cattle call for the flight home on Sunday afternoon.  That done I went back to Hogsmeade and explored the shops and watched a couple of performances.  Once everyone was done doing the Harry Potter stuff we headed on to the other parts of the park.  Overall it was a very nice day to visit a theme park in Florida.  It was overcast and not too hot so we didn’t get too overheated.  Occasional rain came down but I’m told that is normal for Florida.  The rain that fell was very light and would last only a few minutes and afterwards it would clear and the sun would come out and dry most of what had gotten wet.  We then took the Hogwarts Express back to Diagon Alley side of the park and did that side.IMG_3439

After finishing in the park we headed to the City Walk outside the park to look for a drink and some dinner.  We wound up at Jimmy Buffet’s Margaritaville and had Margarita’s and some Nacho’s to start and then dinner!  It was a great end to a long but exciting day!  We finally left around ten and headed back to the hotel and fell into bed for a great nights sleep.  Sunday we could sleep late since we weren’t flying out until the afternoon.  Carolyn had to leave earlier than the rest of us as she had an earlier flight – at least that was the plan.  Her ride to the airport came at 10:00 AM and she left but texted us like 5 minutes later cause her flight to Philadelphia was delayed and she would now miss her connection to Ithaca.  She made it to the airport and was working with a ticketing agent when her flight was “voided” whatever that means.  We had contacted the travel coordinator who organized the travel for the whole weekend, not just us but also the sponsors and the HGTV Execs and he eventually got Carolyn on a later flight thru Detroit and then Ithaca.  By the time we made it to the airport Carolyn was all set,  she just had to spend the afternoon in the airport which is half mall and half food court – kind of like heaven to a 21-year-old girl.  Our flight and Kate and Kenny’s flight flew on schedule and we even landed like 10 minutes early.  Even stopping for an early dinner at Katz’s Deli on the drive home from the airport, we arrived by 7:00 PM totally exhausted but having had a once in a lifetime weekend!   Thanks HGTV!!!

 

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                                          At The 2016 HGTV Dream House Sponsor Dinner

 

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HGTV Winner Weekend in Florida!

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Pool At The Ritz Carlton

So this past weekend we all went to Orlando for the HGTV Dream Home Winner Weekend!  We stayed at the Ritz Carlton (WOW!) and had some free time the afternoon we arrived so we took a walk around the property and then relaxed at the pool.  That evening there was a cocktail reception followed by a dinner for the Sponsors of the Dream Home.  There were representatives of the various companies that donated materials, i.e. the flooring, faucets, paint, Quicken Loans and GMC etc…  There were also some Execs from HGTV and the Scripps Networks Senior Management as well.  Part of the program included the story of my transplant as well as the ambush that happened at church on Palm Sunday.  They then showed a short video clip of the ambush when Tiffany Brooks announced me as the Winner, which was very exciting to see.  I also said a few words of thanks to the sponsors and HGTV.  After the dinner I met as many of the sponsors as I had time for which was very nice.  After the dinner Kate, Kenny, Carolyn, Meg and I went to the lounge in the Ritz Lobby.

IMG_0386At The Sponsor Dinner

Friday we had the morning and early afternoon free to ourselves.  Meg and I had an early morning walk around our hotel grounds and over to the Marriott in the same complex then to the golf course and back to the Ritz and then had the buffet breakfast.  As we finished the rest of our crew texted that they were finally up and had we had breakfast.  We stayed for another cup of coffee/tea while our crew had breakfast.  After breakfast they went off to try out the pool at the Marriott and we  did some window shopping at the Ritz and Marriott and then went to relax at the pool.  At 3:00 PM we headed to Merritt Island to tour the Dream House.  It was about an hour drive to Merritt Island where we stopped about 15 minutes from the house to get miked up and have some make-up applied.  Then we headed to the house stopping just short of the driveway so they could install go-pro camera’s in our vehicle and make sure everyone was in place at the house.  Once everyone was set and in place we drove the last 100 yards and turned down the drive to the Dream House.

IMG_0399It was an amazing experience!  There were like 80 people in the driveway and I was greeted by HGTV Host Tiffany Brooks when I got out of the car.  I was brought over to the GMC Acadia Denali  where the GMC Executive gave me the keys and the keys to the Bryant Speranza Boat.  Then Tiffany brought me to the Quicken Loans Executive and he presented the big check for $250,000.  Then Tiffany introduced me to the project manager and contractor for the Dream House and they presented the biggie – the Keys to the HGTV Dream House!

IMG_0412We approached the house and I was introduced to the designer, Brian Patrick Flynn and he took me to the door and we opened it a crack and then time stopped for  about 45 minutes while the crowd dispersed and they moved the camera and sound crews inside the house and re-set everything after the tour they gave the sponsors while we drove to Merritt Island.  During this time we hung out in the brand new three car garage that is probably bigger than my whole house in Connecticut.  It was so beautiful I probably would be afraid to put a car into the garage.  Once we were all set again we went back and did the big dramatic entrance into the Dream House.  It is hard to describe but fortunately we will all see it on May 27th!

The house is amazing!  The photo’s on the web site are impressive but in person the Dream House is much more impressive.  The sheer scope and magnitude are hard to imagine or describe and the attention to detail is amazing.  The floor to ceiling windows in the Living Room allow amazing access to the million dollar view.  My family was the first to actually sit in the furniture and touch all the furnishings.  It was also fun to hear Brian

IMG_0426Patrick Flynn tell stories about why he choose different pieces in the house, or dis-agreements with contractors about the back splash in the kitchen (which he won and the back splash goes to the ceiling).  We toured the Living Room, Kitchen, Dining Room, Media Room, and the two down stairs bedrooms – the Terra Cotta Room (which on the web site looks Coral or even Orange) and the Blue Terrace Bedroom.  Each room seems to be more impressive than the previous room.  Even the bathrooms are amazing and huge – we actually had six of us plus a camera operator or two and a photographer comfortably in the bathrooms.  Then Brian took us up to the Master Bedroom – WOW!  It is hard to describe.  It has a huge bed and a sitting area in the main room and two leather chairs at the foot of the bed.  Off the bedroom is the bathroom, which is bigger than my living room in CT.  It has a shower that like 10 friends could shower in together (not that that is ever going to be an option).  There is also a large soaker tub and lots of floor space.  There is also a giant walk-in closet.  Almost forgot there is also a deck off the master bedroom so that you can enjoy the view.

After the bedroom Brian had to leave to catch a flight but we stayed and toured the back yard which includes a Lanai, Outdoor Kitchen, Patio, Pool, Luxury Dog House – it goes on and on!  Then there is the dock and the Bryant Speranza 21 foot Speed Boat.

We ended the outdoor tour with a sunset toast to our new Dream House!

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I Won’t Ever Tire of This View!

After the toast on the back deck we had to get inside as a storm was coming across the river.  Once back inside we did final interviews in groups.  First Meg and I were asked questions in the Kitchen, then Kate and Kenny in the Living Room and finally Carolyn in the Media Room.  I hope they got everything they need for the Reveal Show.  We finally left the Dream House around 9:00 PM, and got back to the Ritz at 10:00 and had drinks and dinner in the Lounge.  I am sorry for not having more pictures to share with you but they did have two photographers there and they will get me their pictures in time.  The weekend didn’t end then for on Saturday we did Universal Orlando but that is a story for another time!

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2016 HGTV Dream House

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HGTV Host Tiffany Brooks, Dave & Meg with Father Amjad and Ron Marcho Right After the Announcement

So it is official now so I can write about it here.  I was named the winner of the 2016 HGTV Dream House in Merritt Island, Florida.  It is an amazing prize and includes the House (which was totally renovated and remodelled), the furnishings and original artwork, a $250,000 cash gift from Quicken Loans, a 2016 GMC Acadia Denali and a new Bryant Speranza speed boat!   I still can hardly believe it but I have signed a bunch of paperwork about it all.  My daughters and son-in-law worked with the Rector at our church and the crew from HGTV to set me up for the ambush.  The church was planning to do a blessing for me and my wife for the 1 year anniversary of our Kidney Transplants at the Palm Sunday Service, very much like they did the Sunday before the Transplant last March.  At the end of the Blessing, Tiffany Brooks, who  is also a Transplant Recipient, was at the Lectern and things got really crazy after that!  After the service was over, we went outside and they had a GMC Acadia and the big check for $250,000 from Quicken Loans.  We posed for a bunch of pictures with the check, with the car, and with everyone.  After we did some more interviews in the parking lot and in the church, eventually it calmed down and everyone left.

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After the Chaos of the Ambush at Church

Meg and I had been totally in the dark but my daughters and son-in-law had been in on it for a couple of weeks!  They were all planning to come for the palm Sunday Weekend since it was Carolyn’s spring break from college.  My name was selected in early March and they wanted to reach out to a family member but only could find a number for my son-in-law, Kenny, at his office.  They finally convinced the receptionist to put them thru to his voice mail and we are eternally grateful the she did and that Kate and Kenny decided to return the call and the it wasn’t a scam, which was the first reaction!  Over the next two weeks Kate & Kenny enlisted Carolyn to the cause and they worked with HGTV, and Father Amjad at our church to set things in motion.  We didn’t know any of this until after everything had quieted down and we went out to brunch and they spilled the beans!  The time since has been a blur!  I thought getting the new Kidney was my 15 minutes of fame  – this is like winning the lottery for a second time!

dh2016_front-yard-full-house-straight-on_h.jpg.rend.hgtvcom.966.644Courtyard of our new Dream Home

Sometime in the next few weeks we will go to Florida to see the house!  There is a big dinner with all the sponsors of all the different aspects of the house.  We will have a tour of the house that will be filmed and hosted by Tiffany and Brian, the designer of the house.  We are very excited and hoping for great weather and a great weekend in Florida!

 

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One Year Anniversary

th-3So it is March and that is the one year anniversary of my Kidney Transplant – March 3 last year 4 women donated to 4 men and changed our lives forever.  This was all made possible by the altruistic donor, a wonderful woman from Mystic, that wanted to help someone so she donated her kidney and I was fortunate to receive her kidney.  Then Meg donated to a man from Old Saybrook, then his wife donated to a man from New Haven (who is a volunteer BSA leader), then his wife donated to a man from Stamford who had been on dialysis for over five years waiting for a kidney.  It is hard to believe it has been a year and my life has improved immensely.  I am not 100%  recovered and I have had some significant challenges since the transplant, including three additional hospital stays, but I feel so much better and can do so much more than when I was on dialysis.  Dialysis saved my life first – the lowest point I was at was the several months prior to dialysis.  Having said that I don’t miss Dialysis at all!

IMG_0548Me with my Kidney donor, Patricia!

My kidney function continues to be doing very well.  I had a Kidney Biopsy in February where they put needles in my new kidney and take 2-3 tiny slivers of the kidney out.  One they will do some chemical tests on and the others get viewed under various micro-scopes.   Apparently there are some forms of rejection that they can catch this way where is they wait for it to appear in my monthly blood work it is already too late.  I have an appointment at Yale Transplant next week to get the results of the biopsy.

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My job hunting is not going particularly well.  Everyone is very interested with why I was on disability and they lose interest in me once they hear about the transplant.  I am starting to look at opening my own part time business from home to generate a small income and give me some sense of purpose.  Hopefully I will have more to post about that as it comes to fruition.

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Going Stir Crazy

th-7Being basically healthy enough to return to work and not having a job to go to is starting to make me go a little stir crazy.  I have been having some minor health concerns but nothing that would prevent me from working.  I saw the transplant nephrologist earlier this month and had a good visit, my new kidney is performing very well, and we seem to have gotten the side effects from the immunosuppressant drugs under control.  I have had some minor balance issues when walking or on the treadmill, but the doctor didn’t seem to be too concerned, only that I should monitor it and let him know next month if it is increasing in frequency or severity.  It has been almost two months since I interviewed with my old BSA Council and still I have not heard back from them and they have not responded to my several attempts to contact them.  I know, thru other sources, that they can’t hire the position as they have to cut payroll and even further than just not hiring this position, but it would be nice to get some feedback on my interview.  I have also contacted the other councils in CT and there is nothing currently available.

th-5In addition to my work situation, or lack there of, I am also going crazy from the loneliness.  I see very few people on a daily basis to talk with, so when Meg comes home I talk her to death, just because she is another human being that I can converse with.  While she obviously wants to talk with me also, I think I am starting to freak her out, since she comes home and wants to relax.  Frodo and Snickers are not particularly good conversationalist so I seem to be forcing conversation on Meg when she might not be ready.  I find myself talking to strangers more and more – at the gym, the grocery store and even instant messaging (not strangers, but friends).  When Carolyn was home for her Christmas break I had someone to talk with, but she is now back at school.  I am scheduled to go to my old council’s annual dinner this week so I will get to talk with some people.

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New Year – Decisions – Job Hunting – UGH!

th-6It has been a couple of months since posting here and a lot has happened, but I seem to be no farther along in getting back to work than I was.  In November I had an interview with the BSA Council I worked at for 10 years before I went on disability.  It was a very weird interview – they had two candidates and we did interviews with most of the staff in twenty to thirty minute blocks, with 2 staff members at a time.  I think I answered the same 3-4 questions in each block.  Several of the people I met with were very good friends I had worked with for years, and the others were new employees since I had gone on disability.  This lasted for three and a half hours and then they told me I was done as they “had to meet.”  I knew then that I didn’t get the job, but not the reason.  I have been interviewing with BSA Council’s since 1987 and I have never not been told the results before I left the building.   I was either offered the job and given a contract to sign right then and there or I was told I didn’t get the job and here are the reasons why.  Even in interviews with multiple applicants at the same time, I have never left an office without knowing the results.  I have since found out that they didn’t have any money to hire the position and will have to also eliminate other positions, but since the interview in November nobody has called me or responded to my calls or emails.  I hope it had nothing to do with me, just the situation they find themselves in but I would like some feed back.

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The interview was the week before Thanksgiving and we had a very nice Thanksgiving in Waltham, MA, at Kate & Kenny’s apartment.  Kate got to use most of her wedding gifts.  Meg helped, mainly with the Turkey and Gravy, and we had a nice dinner with Kenny’s family.  The day after, rather than going shopping, we went into Boston and did part of the Freedom Trail and wandered the North End and had a great time.  Christmas was very nice.  Christmas Eve it was just Carolyn, Meg and me and we had a nice dinner and then went to the late church service.  Christmas day Kate and Kenny arrived around 4 PM and we had a great dinner (Roast Beef Tenderloin) and then did exchanged presents etc…  They stayed thru Monday and we had a great weekend.  New Year’s was fairly low keyed with Carolyn having some friends over and Meg and I trying to stay awake long enough to see the New Year.  We were in bed by 12:30!

th-4Now that the New Year has started I have to get the job search going again.  Since my old BSA Council won’t/can’t hire me back I have to decide if we are prepared to stay with the BSA and move or we stay in CT and I look for work outside the BSA.  Having been with the BSA since 1988 I don’t really know how to job hunt in the real world.  Also, there are a lot of other reasons to stay in CT – Meg has a good job she likes, I am close to my many doctors/specialists and the Transplant Center, and I would lose my shirt on the sale of my house – if I can even get a buyer.  The other option is to stay in CT and get any job to pay the bills and wait for another opening at my old Council.  The BSA is fairly fluid and positions are open fairly frequently and I think I know of some people who are looking to leave so jobs may be open there soon.

 

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Stalled and Frustrated

th-3It has been quite a while since I have written anything on this blog.  Quite a lot has happened and at the same time I seem to be stalled and not getting any closer to moving forward.  In September I was suffering from a long-term bout of diarrhea but it was getting to be manageable.  I had an initial interview with the Scout Executive from the Council I was with prior to disability and it seemed to go fairly well.  He was interested in having me back and had some ideas of part-time positions that I have some extensive experience at doing.  It seemed to be a win win situation but I needed to get final clearance from my doctors and he needed to get final clearance as well.  The goal was for me to start working part-time on November 1st and then to hopefully get back to full-time by next summer.

th-4Then I wound up in early October in the hospital (AGAIN!), but just overnight, due to a couple of viral infections that they needed to get under control.  Usually I am a pretty good patient, but this time I didn’t really understand why I was in the hospital, so I was not a very cooperative patient.  They only kept me overnight so that they could start me on drip antibiotics and then transition me to the same medicine in pill form.  The antibiotics started very quickly to stop my diarrhea and over time would take care of the CMV virus which is common with Kidney Transplant Patients.  I got out in less than 24 hours and had two weeks of prescription antibiotics to continue taking and started to feel better.

   IMG_0605     The weekend after getting out of the hospital Meg and I went to Ithaca to see Carolyn for the Ithaca Apple Fest.  Kate and Kenny also came to Ithaca and we all had a great weekend.  In addition to doing the apple fest we also went hiking at the Taughannock Falls State Park.  the following weekend Meg and I went on a trip for our 30th Anniversary to Cape Cod.  We had a   gIMG_3317reat time.  The highlight of the trip was a whale watch out of Provincetown, MA.  We saw three different species of whales – Fin, Minke & Humpback Whales.  We only saw the Fin & Minke from a distance and they dove deep each time and stayed down a long time after they dove.  We did see several pods of Humpback Whales and we even saw a mother / cub grouping.  The whole weekend was a lot of fun and a great way to start our next 30 years.

Upon returning from the Cape I was scheduled to have a final meeting about the Job Prospect, but right after pulling out of my driveway I received a call telling me not to bother coming in, since the funding for the job didn’t come through!  I have some feelers out with the other nearby Boy Scout Councils but so far no luck in any openings.  Now I have a form to return to Met Life and the doctors at the Transplant Clinic tell me they can’t complete the form and that my primary care doctor (who I have not been seeing, on advice of the Transplant Clinic) is supposed to complete the form.  My primary care doctor tells me he doesn’t know enough of my recent history to fill it out the form and that the Transplant Clinic has been in charge of my care.  I am now stuck in a round robin and adding into that I keep getting put on hold with Met Life.  I think I can return to work, but I can’t get anyone to fill out the paperwork saying I am able to return.

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Six Month Anniversary!

th-3So this week is my six month anniversary of my kidney transplant.  The transplant happened on March 3, 2015 and a lot has happened since then and in many ways I am making progress, but in some ways I still feel that I am not making progress.  My kidney function is doing very well and I don’t miss dialysis at all, and I especially don’t miss the dialysis diet.  I have started exercising and just when it seems like it is going well and that I am making progress, something gets in the way and I miss some days and have to start all over.  The same happens around with chores around the house.  I build up energy and am able to do more yard work or house elf chores and then I get sick and can’t do anything for most of the week and then when I go back to doing work I can only do about half of what I was able to do the week before.  I am trying to determine if I have the energy to go back to work so I am trying to simulate the level of activity that a typical day working would entail.  My problem is that I haven’t been able to get two days in a row complete so I don’t know if I will have an answer until I actually have to go back to work.  I had an appointment with a Nephrologist at the Yale Transplant Center this week and got the final approval and a note to take to the BSA saying I can return to work.

th-1I realize that I will frequently catch bugs and viruses due to the amount of immunosuppressive drugs I take in order to prevent rejection of my new kidney.  This is what cause both of my recent stays in the hospital, in May, right after Memorial Day, with the blocking of my Parotid Gland and then on the Fourth of July with Pneumonia.  I am hoping that I can get thru Labor Day with no problems.  My inability to fight infection is one of the main things that scares me about going back to work.  In her second week of the new school year Meg caught a cold at school from a student.  She only missed one day of work but it is another reminder of the germs she can be exposed to and bring home with her.  My doctors have told me there is not much that can be done, that my immune system must stay suppressed.  This is just the burden I have to get used to living with.  I feel like my life has just been one big burden for my family, especially my wife, for like 3-4 years now and there is no end in sight.  I need to learn how to avoid situations where I can be infected or to take steps to prevent the germs from developing into major issues.  Making changes to lifetime habits is possible but does take time for new routines to become habits.

th-4Summer is winding down, although we are still in the middle of a seemingly never-ending heat wave, but fall is coming!  Meg started back at school last week & Carolyn’s classes started last week and the swim team has started captain’s practice this week.  I am hoping to re-enter the work force since I did receive a letter from my doctor saying that I can return.  I am nervous about this as I don’t know if there are any jobs at the BSA Council I was with or if they even want me back.  I would prefer not to have to relocate – Meg has a job she likes here, I like my various doctors, we like living here, and we would lose our shirt if we tried to sell our house.  We also have a couple of weekend trips scheduled for this fall.  The first weekend of October is the Ithaca Apple Festival and we are going and Kate and Kenny are also going to be there, so we should have a great weekend.  The following weekend Meg has a long weekend and it is also our 30th Wedding Anniversary so we hope to do a long weekend trip – possibly to Maine or Cape Cod or Boston – location still to be finalized.

IMG_3189We also had a major problem this past week with water.  We had no water Wednesday thru Sunday.  We had service on Thursday and they thought they fixed the problem but didn’t.  Friday night we wound up spending the night at the Hampton Inn in town so we could shower etc…  Finally on Saturday they came back and after several hours of looking, we brought in a backhoe and they were able to dig up the yard and find the well.  They had to replace the pump and then we spent from like 5 pm to midnight trying to clean the water enough so that we could run it thru our filter.  It is now (Sunday Morning) running fine.  The water is clear and we have pressure and things are back to normal – except the $3000 it cost is gone now!

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End of Summer

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I have been going to the gym since about 6 weeks after my transplant, but I have only been walking on the treadmill and not lifting any weights.  This past week I was cleared to lift weights and started to lift again.  I had not lifted at all while I was on dialysis because any isometric sensation in my fistula would make it move and then I wasn’t able to hit my vein when I was putting the needles in for dialysis.  The doctor told me to start with very light weights, but apparently his idea of light and my idea are very different.  I started with like 1/3 of the weight I was lifting prior to my kidney issues and had significant trouble lifting that amount.  Also I could really feel my fistula reacting to the isometric of the exercise.  After having difficulty with the first 2-3 reps, I reduced the amount of weight even further and that seemed to work better for me, though it made me feel slightly like a wimp.  I have managed to get in a couple of days of Chest/Triceps, a day of Back/Biceps and the dreaded Leg Day.  Upon Doctors advice I am not doing anything having to do with my waist or abs, so as to not damage my new kidney since that is where it was put.  I have kept the weight very low and will continue to do so for the first few weeks of doing this and then gradually increase the weight.  At the same time I have been increasing my walking, both the speed and the amount of time, on the treadmill.  I am trying to push myself for a couple of reasons;  #1. I need to lose some weight – since my transplant the prednisone causes weight gain and I want to get back to my pre-transplant weight, and #2. I am trying to push myself to see if I can handle doing activity for an extended period so that I can return to work.

th-4I am very nervous about the prospect of going back to work.  I really want to go back to work at the BSA, but I don’t know if I will be able to physically work an 8-10 hour day, and there are many days that exceed that requirement.  It is hard to explain, but I don’t know if I want to know the answer that question.  I am afraid that I won’t be able to work or at least I won’t be able to work at the level that I worked prior to my Kidney Issues.  Not knowing is somehow better than knowing if the answer is no – if that makes any sense.  I talked in my last post about not wanting to relocate and how I may not have a job with the local council that I was with prior to dialysis.  That is a concern and is kind of always seeming to be on my mind.  I am hoping to start in October part time and see how that goes before going back full time.  I have 28 years working for the BSA and need to make it to retirement and I would have no idea how to go about looking for a job outside the BSA.  I expect to be finally cleared to go back to work at my September appointment with the transplant center.

th-3The coming months should prove to be a busy time.  This coming weekend we are planning a trip to Waltham, MA, with Carolyn, to visit with Kate and Kenny.  We hope to go to Providence for the WaterFire on Saturday evening and then return to their apartment in Walthm.  Carolyn goes back to Ithaca the following weekend and moves into her apartment on August 22 and Meg goes back to work next week (Wednesday, August 19th) but her students don’t come back until Aug. 24th.  In September I have a lot of Doctor visits scheduled including; Yale Transplant Center, the Cardiologist, the Dentist, my Endocrinologist & my primary care physician.  I am also suppose to have a biopsy on my new Kidney at the 6 month mark, but that has not yet been scheduled but should happen in September.  We are also planning a weekend trip to Ithaca for the first weekend of October for the Apple Festival.  We are hoping that Kate & Kenny can come with us to Ithaca.  October is also Meg and my thirtieth wedding anniversary!  It is over a long weekend so I am hoping that we can get away to somewhere for a couple of days.

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Living A Movie For Life

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I spoke with my doctor about my immune system issues.  He did check my test results and while I had one recent test that showed my immune system to be too low he wanted to wait until the current test result came back.  Of course that test came back normal so they didn’t change any of my medications that impact my immune system.  I did talk to my doctor about a problem I have been having with urinating and they put me back on Flomax and the problem has since gone away.  I was originally on Flomax after my Transplant but was taken off when I was having some issues with balance/dizziness.  So far I haven’t had any problems but am careful not to get up suddenly, especially when I wake from sleeping.

My doctor also told me that I should be able to go back to work this fall, although he recommends starting with part-time at first and work back in to full-time.   The problem is that I don’t want to relocate, but I am not guaranteed a position with the council I was with prior to disability.  Also I don’t know if they even want me back.  If I leave the BSA I wouldn’t know how to look for a job, I have been with the BSA since 1988 and have no idea how it is done today.   I am not sure what to do.  I like the idea of part-time and will explore that with the SE at my old council.

Some good news is that I am now on a monthly schedule of appointments with the transplant center!  This schedule will continue, basically for the rest of my life.  Hopefully, nothing else will happen causing me to return for more treatments.  This is the same schedule that most transplant recipients are on to get their kidney function checked.  My next appointment is not until the first week of September, due to everyone’s schedule, but if something happens to me I can always get in on an emergency basis or just go to the emergency room if it is a major issue.

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This week I went in for my annual Thyroid Ultrasound.  Two years ago I had an issue with my thyroid and had a biopsy done but it was benign.  My thyroid is slightly enlarged so I now do annual thyroid Ultrasounds just to make sure it is still OK.  The nodule they were concerned about last year is still there but has not increased in size.  There is a new nodule in the center but it is not yet big enough to be a concern yet but they will talk with my doctors (GP and Endocrinologist) about this and then I may have another biopsy.  I also need to schedule annual appointments with my cardiologist and ophthalmologist.  I like my cardiologist but anything to do with my eyes freaks me out!  I haven’t been in like a year and a half and can only put it off for so long!

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The heat is currently an issue for me, as it is for many.  Since I am feeling a little stronger I am trying to get some things done around the yard but it is tough to work in this heat/humidity we have had the past two weeks.  Prior to that I still had problems with the pneumonia so I wasn’t trying to work in the yard anyway, but now that I can but it is just too hot.  I did get some brushed cleared on some bushes that I hadn’t been able to get to for the past 3 years.  I still have some more to cut but I have started.  I also have killed a bunch of weeds in an area of the yard I am trying to reclaim.  I have also started collecting some rocks from the woods for some stone wall projects I have planned. Last week it was hot but I could work for like forty minutes and then take a break.  It took a while but I was able to get projects done in time.  Now it is so hot that that I am covered in sweat before I can even gather all the tools I will need.  I am hoping that August will provide better wedding so I can get more accomplished.

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Meg is off on a trip to West Virginia to see her brother and her sister who is coming up from Houston.  They plan to see what has been done on their mother’s house and make decisions about what still needs to be done so that we can put it on the market.  Originally I was planning to go with her  and on the way back we were planning a couple of days for ourselves with some side trips in West Virginia and Virginia.  Unfortunately at my last doctor visit at the transplant clinic travel was discouraged as I am susceptible to all kinds of bugs/viruses that fester in hotels. I am OK for trips if I’m not staying in a hotel or likely to do mass transit.  I miss not going because I have been traveling to Charleston, WV since like 1980 with my wife and have many great memories of these trips, and once we sell Meg’s family home I don’t know when we will be able to get back to West Virginia.  It is like another major part of my life is coming to an end.