Medication Issues

I take a variety of meds – for high blood pressure, arthritis, cholesterol, anti-rejection medications, vitamins, acid reflux, and probably more that I can’t remember.  I continue to have problems making sure I take my medications on time every day, twice a day.  I try to take them at 9:00 AM and 9:00 PM, and I have alarms set on my phone to remind me, and whoever is with me, that it is time to take my medications.  95% of the time this works out great and I take my pills easy peasy.  In fact, I have gotten so used to swallowing pills that I can just put all 14 in my hand and knock them back with a big swig of water even though a couple of my pills are like horse pills.  My problem is the 5% of the time when I don’t take my pills.  My alarm goes off and instead of snoozing it, I turn it off, usually by accident, or I’m out of the house at the time it goes off so I turn it off and forget to set a reminder to go off in like a half an hour when I get home and can take them.  I also have an issue with the drugs I don’t take every day but have to do once a month or once per week.  I am on a BP Patch that I have to change one a week and I take a vitamin B-12 Shot once a month.  I try to change the patch on Monday mornings but frequently forget until Tuesday.  Also, occasionally it falls off on its own at some point and I don’t notice it.

Most pills, if you miss taking them, will not really have an effect on you, but the Prograf, Prednisone and Cell Cept do.  The next day I will have a really bad day, with no energy, dizziness and general lethargic feeling.  I have talked with other transplant recipients about this and not everyone has problems if they miss their meds.  Everyone admits to missing taking their medications, but only a small percentage feel anything when they miss or the day after.   I’m not really sure which drug is responsible, but I suspect it is the Prograf, mainly because in my monthly blood tests this is the drug that they look for in my blood and that they make changes in the prescription depending on the blood test results.  While this doesn’t happen on a regular basis, it does happen often enough to be a concern.  While I’m concerned about this and want to correct my behavior, I don’t have any ideas of how to correct it so it doesn’t happen.

I went recently to my endocrinologist to have my diabetes checked.  My blood sugars continue to be too high, although the doctor thought most of my levels were acceptable. My A1C, while down from my last visit (a minor miracle in itself), continues to be high but he thought this a good sign.  This has been a constant battle for me and while they say that if you lose weight your blood sugars will go down, that didn’t happen with me.  I was like 50 lbs lighter at the time of my transplant (prednisone screwed that up) and my blood sugars continued to be the same that they are now.  I am testing myself again like four times and I take shots four times a day.  Meg and I are trying to improve on what we are eating.  I have had this issue for so long and have tried everything and nothing seems to work for me.


Light At The End Of The Tunnel

August is going by way too fast.  It is already August 24th and before I know it the leaves will be turning color and start falling.  My youngest daughter moved into her new apartment this week and is in orientation for Law School and will start classes next Monday.  My wife goes back to school next Tuesday and students start on Thursday.  WHERE HAS THE SUMMER GONE! We have used the new boat but not as much as we would have liked to.   We try to go out twice each week, but it is terrible when life gets in the way of your hobbies.  We did just have a great weekend with our family.  Kate and Kenny came as well as Carolyn and her boyfriend Wojciech, so we had a full house.  I fired up the smoker on Saturday and we did Ribs and Chicken and on Sunday we spent the day on the lake!

Wiffle Ball Game While Ribs/Chicken Are In The Smoker

Despite all this, I have made some progress on my home projects and we are coming to the end.  This past month we got the final delivery of the furniture for the new Living Room and my wife has gotten curtains up in both the Living Room and the Dining Room. The only thing left to do is to get some artwork and/or family photos on the wall.  This is far more complicated and endeavor than you can possibly imagine and involves first agreeing, then choosing, assembling and then finally deciding how to hang and eventually you get to the hanging of the picture.  And then we still have the dining room to go – oh and we have a lot of blank wall space in the kitchen as well.   We did also get the house siding completed in August!  The siding looks great and now we are down to the driveway paving, but it is not that simple.   First, we have to have the masons back to rebuild the retaining wall that was blown out by the cement mixer and dump trucks that built the foundation for the addition, way back in March!  We have hired the same masons that did our front steps/walkway and they will start on Saturday and it should take a week.  Hopefully, then we can hire a paving contractor and finally get the driveway paved.  My wife and daughters wanted the driveway done as one of the first projects, but I was advised to do it t the end since all the projects we had planned involved bringing in large vehicles that might damage new pavement.  However, if the snow comes and we don’t have a new driveway my wife may beat me to death.

We still do have a variety of small projects planned on the house and property for the future.  In September we are having the dining room floor refinished so that it will match the new floors in the kitchen and living room (the Addition).  Long term we want to get some new dining room furniture, but must wait until we have paid off our new living room furniture.  We also still have a variety of small electrical jobs that need to be done – new sconces by the front door, fixing the motion sensor in the back yard spot lights, outlets and light posts that somehow stopped working during the construction process, the list goes on forever it seems.  This year our energies were focused on the house, both inside and out, but the coming year we plan to work on the lawn and landscape.  I have an enormous amount of brush that needs clearing, and clearing so that it doesn’t grow back!  I have trees that I need to thin out to that more light can get through to the lawn.  And I have way too much crab grass that I need to replacee with nice basic grass.

9 Way Kidney Exchange – WOW

This past Thursday (July 27th) I was invited by the Transplant Coordinator at the Transplant Center at Yale New Haven Hospital to attend a press conference to announce and celebrate the success of an 18 patient  – 9 way kidney transplant exchange that the Transplant Center completed over two weeks in May/June!  It is a truly remarkable story and the largest transplant chain ever completed in Connecticut.  There were some great individual stories, but one lady in the chain was receiving her third transplanted kidney.   Her husband was a donor and they had donors/recipients from New Hampshire, New York City and as far as Florida.  Unlike my exchange that had all 8 surgeries in one day, they had to do this exchange over about 2 weeks because of the logistics involved with scheduling patients, surgeons, Operating Rooms etc..   It was great to see many of the people who worked on me two and a half years ago.  Also I spoke with one of the surgeons and he was saying how they learned so much from our 4 way exchange that they used in this exchange – especially to not do the press conference the week after the transplant when everyone is still recovering from surgery.   I also had the chance to talk with the surgeon that operated on me, Dr. David Mulligan (Head of the Transplant Center) and Dr. Sanjay Killkarney, the surgeon that removed Meg’s kidney.  I had planned to quietly sneak out after seeing my Doctors, but as I looked to the door I saw Patricia  Menno-Coveney, the altruistic donor that donated her kidney to me!

For more information about this extraordinary transplant chain you can read about it at the following link.

It was great to see Patricia!  Unless you have tried to live with kidney failure or experienced life on Dialysis, it is hard to describe the feelings I have for Patricia.  We also spent time being introduced by the Transplant Coordinator, Joyce Albert, to several of the donors/recipients in the saga and some of the administrators of the Yale Health System.  We also had a chance to meet the lady that started this transplant chain.  She was an altruistic donor, and she and her wife, who also donated a kidney about a year ago, both got inspired by hearing about Patricia and our transplant exchange.  It was very humbling to spend time with these three ladies who selflessly donated.  We were also interviewed as a group and while I tried to just stand there I did tell them they will never know the extent to which they have improved the quality of life for their respective recipients.  Patricia and I did get to have a nice visit where we mainly talked about our families.  She also wanted to know about the HGTV Dream Home hoopla.  She had read about it in a Connecticut Paper and then saw the TV show.  The whole day was a great experience and hopefully there will be more transplants to come because of the great press that they receive from these events.

Misc Summer Activities

It has been over a month since I have posted and I feel guilty because I don’t have a great reason for not posting, it’s just that I have been preoccupied with all that I have going on with my life.  The whole family went to Houston, Texas last month for my nephew Andy Huber wedding to Sarah Bean Huber.  We had a very nice time.  This was Meg’s side of the family and everyone is very spread apart, living in New England, West Virginia, Houston, Santa Barbara, & China!  We seem to only get together at weddings now and of the five cousins, three are now married (Christine, Kate & Andy) and two hopefully will get married (Tommy & Carolyn).   Once everyone is married we will have to come up with another reason to get together – family reunion, family vacation – something along those lines that everyone can come to.

The boat continues to be a lot of fun for us.  It is both relaxing and exciting at the same time.  Griffin is starting to really enjoy the boat and he really likes swimming.  He now just leaps in the water off the back swim deck without a second thought, but only when someone is already in the water, he doesn’t want to be the first.  We haven’t been out as much as we would like but we have gotten out a couple of times with Carolyn, once with Kate and Kenny and a couple of times just by ourselves.  We have finally gained enough confidence in our abilities with the boat that we have started inviting friends out with us.  We would like to get out more but we are still dealing with a lot of house issues that probably won’t be finished before the boating season ends.

Our house projects continue to move along, but not as quickly as we would like.  In June we completed all of the work for the addition and the painting but we were still with our old furniture.  During the first week of July we received part of our furniture order.  Apparently the love seat wouldn’t fit on the truck and the was damaged, so they had to fix it or make a new one, and the recliners were not yet made.  The pieces we received looked very nice but we want the rest of the furniture.  We also had the dining room painted in June, but now all the furniture that was in the living room is in the dining room waiting to be picked up.  We finally decided (well my wife decided) on curtains and we have those up in both the living room and the dining room.  This week our front steps and walkway were completed.  Hiring a mason was much more involved than I thought.  I talked with four and had bids all over the place.  We finally decided on a local Shelton company that had thirty years of experience.  We are very happy with the results.  Next week we will finish the siding and that will leave us only with the driveway, which we are thinking about different options.

So on the medical front I have not had many problems lately.  I did finally see a doctor at the transplant center.  I had been seeing PA’s and Nurses, and while they probably know as much or more than the nephrologist, it was nice to see the doctor.  My creatinine continues to be very good at 1.01 (it was 13 at the time of my transplant).  They are concerned about my BP and I am to start seeing my Cardiologist again.  I also saw my Rheumatologist about my knees and mainly because the transplant center refused to renew the script anymore.  After my transplant they had to be in charge of all my medications and which specialists I saw, now they have released me from that and won’t renew my meds, except for the anti-rejection meds.  There were no real changes in my arthritis in my knees, they still hurt!  He did give me some new stretching exercises for them and he renewed my prescription for Tramadol.  I have to now schedule my eye doctor (I hate the eye doctor) and my Cardiologist.

June Boating

June has started and we had our first outing on the new boat!  On the Wednesday after Memorial Day I had a training ride with someone from the Marina.  He showed me how everything worked and we did a tour of the lake.  It had been awhile since I was behind the tiller of a boat, but it slowly came back to me.  It was a weekday so the lake was not crowded and there was little wind so the lake was like glass.  I was able to really let the throttle out so we made great time getting down the lake.  I actually was able to dock it successfully the first time (I wasn’t on Sunday with all kinds of people around!).  Meg had her training on Saturday morning and everything was new to her but she did very well.  On Saturday afternoon I brought Carolyn, Wojceich and Griffin to the Marina and we met Meg and all went out!  After a rough launch by me, we made it into the lake.  It was cloudy and windy so the sun kept popping in and out of clouds.  When it was out it was very nice, but when it was behind a cloud the wind made it pretty cool.    We never got lost, but we were confused several times about where we were in the lake, but we were always able to figure it out and get back on course.  We were hoping to stop at an island so that we could try to get Griffin to go in, but when we tried there was already a boat there with a dog that kept blocking us from approaching shore.  Getting the boat back into our slip went better than I had expected.  Once you realize that you do not have brakes, like in a car, and can gauge the drift after you put it in neutral it goes a lot easier.

Griffin & Carolyn Swimming

Catching Some Rays After Swimming

The second weekend of June we went out again on Sunday, when it was like 90 degrees.  There were quite a few more boats on the lake this weekend and the waves were more intense but we had a nice time.  Carolyn went swimming and that encouraged Griffin to try.  He was nervous, but the dog paddle must be encoded in his DNA because he did a great job swimming with Carolyn.  We are starting to know our way around the lake a little bit and we found out way to chicken rock, but it was so crowded we didn’t feel comfortable anchoring near all the other boats so we wound up out of sight of the rock but found a nice spot to anchor so Carolyn and Griffin could swim.  In order to try to get to an island to park the boat at we either need to get there very early or go on a weekday when it is not as crowded.  We hope to do this so that Griffin can enter the water from the shore and not have to only go in off the back of the boat.  We should be able to go out during the week after Meg gets done with school next week!

Very Eventful Month of May

For Mothers Day weekend Kate and Kenny were scheduled to come visit and then Carolyn decided to bring a car load of stuff home from Ithaca, so we had a full crowd.  Kate and Kenny arrived Friday with a big announcement – Kate is Pregnant – so Meg and I are going to be Grandparents!!!!  Her due date is December 13, 2017 – two days after Kate’s birthday!  We were totally surprised.  Meg is already at work knitting baby things.  We are both in a state of shock, but when we talk about it we get very excited.  Most of our talks are about what Grand Parent name do we want to be called.  We had a great visit.  Carolyn came on Saturday with a car load of stuff from her apartment.  These visits are great but they always seem to end too soon and then everyone is gone.  Griffin had a great time, he exhausted himself, and then he sleeps all afternoon Sunday after everyone leaves.

So after waiting for a year for the Bryant Speranza boat that was a part of the 2016 HGTV Dream House Prize it finally arrived but due to a variety of paperwork issues the Marina wasn’t able to get it registered.  Finally after talking with the DMV, Bryant Boats and Echo Bay Marina we were able to get Bryant Boats to re-issue the Title directly to me so I could take it and get it registered.  I finally was able to take the paperwork to the DMV and get it registered and pay the sales tax.  Now I was supposed to pay sales tax on the full value of the boat ($57,000) and trailer ($4,500) however because of how the sales receipt was written I only was charged sales tax on the options I ordered – $9,900.  So instead of paying the $5-6,000 I expected to pay, I only paid like $700.  I tried to explain that I won the boat and owe the sales tax but they wouldn’t hear it.  So if anyone wonders why the State of CT is in such a financial mess look to the bureaucracy that is not at all flexible.  My one fear is that someone reviews the transaction but they went thru the same training as the clerk at the counter – so I should be safe.

The weekend after mother’s day we went to Ithaca for Carolyn’s Graduation!  Kate and Kenny met us in Ithaca on Saturday afternoon.  Saturday night we took Griffin to the Ithaca dog park and he ran with Kenny and Wojciech and he had a blast.  Then we went up to the IC campus for the Graduation Fireworks Show.  Sunday we woke very early and still almost didn’t get in to the Graduation.  We arrived in time but by the time we got thru traffic and actually parked the Academic Procession had started.  Kate, Kenny and Wojceich were on one side of the procession and Meg and I were on the other.  Of course we couldn’t get into the stadium from where we were, but on the  other side they could so they actually got a seat on the side of a hill in the end zone.  Carolyn Graduated Summa Cum Laude, with an honors program cowl and in the Spanish and English honor society.  We are very proud of her and look forward to watching her future in Law School and beyond!  Monday morning we packed up her apartment and headed home.  Because Carolyn has had a slight cold, Meg rode with her and Griffin rode shotgun with me!  We got home Monday night and Carolyn and Wojceich left on Wednesday for a post Graduation trip to California!


Meanwhile work on the addition continues, and we are nearing the end.  The back of the house has been sided, a new back door has been put in, central air conditioning is installed and working, a new front door is in, and finally the front steps and walkway have been ripped up.  Right now there is a big pile of concrete in the front yard waiting to be hauled away and I am looking for a mason to put in the new steps and walkway.  With the addition almost finished we are scrambling to get the final details completed.  As I type the painter is at work.  This past week we ordered some new furniture (we actually used a designers services – very unlike us), and purchased a new TV.  Hopefully by mid to late June we should be all set.

April – A Variety of Things Happened

So it has been a month since I have posted anything and a variety of things have been happening with the construction, family visits & movement on the HGTV Bryant Speranza Boat!  I had the surgery to finally remove the cyst on my neck at the end of March.  It went very well and all the stitches were under the skin and they will dissolve on their own.  There are three layers of stitches so there is still a small bump on my neck but it is receding as the stitches dissolve.  I saw the reconstructive surgeon and he told me there was nothing in the cyst – Good News!  It doesn’t bother me at all like the cyst did, but I feel a little friction when I wear a shirt and tie – fortunately that is not really a retirement look for me these days.

We have made a lot of progress on the addition this month!  At the beginning of the month they were just finishing pouring the foundation and since then they framed it out, put on the exterior walls, roughed in all the work for the AC, Electrical and plumbing, and the Deck is almost finished!  This coming week they are putting in the wood floor, putting up the wall board, putting vinyl siding on the addition and the back of the house, and finishing the deck.  The work is going well, but everything is just starting to be impacted by the weather – last month it was snow and this month it is rain.

Griffin, our new puppy, is an absolute joy to all of us, but Meg and I are having a blast with him, although he exhausts us out most days.  In April we had visits with our daughters almost every weekend.  Kate/Kenny & Carolyn and her boyfriend came to visit for the weekend and when they left the Dog was exhausted.  There was always someone to play with him and when done they passed him on to the next person.    It was a great weekend and nice to see everyone and we ended with everyone going with us to church for Palm Sunday and then we went to brunch.  After everyone left Griffin went to sleep and only go up to go out to pee!      We had a full house and Carolyn made her law school decision!  She will attend the UCONN Law School in Hartford, CT as a UCONN Presidential Scholar with a full scholarship!  She had a variety of very good options at very good schools.  UCONN will give her some opportunities that she is interested in doing, including studying abroad, summer programs and internships.  Now we are looking forward to graduation in less than a month!  A slight pause for trips to California and a family wedding in Texas then the summer job in Philadelphia and the frantic rush to get ready for Law School!

For Easter Weekend Kate invited Griffin to come to visit in MA, but his parents had to come as well!  We had a very nice visit and Griffin didn’t terrorize their house too much.  Griffin also got a chance to meet Kate’s in-laws new Poodle, Holly.  Holly is about Griffin’s size although she is two to three months older.  The meeting didn’t go as well as planned but they eventually interacted and had some active play time together. Griffin had just woken up from a nap and Holly had an over abundance of energy.  Eventually Griffin woke fully and was able to get active with Holly and show her who is boss!

The weekend after Easter we went to Ithaca to see Carolyn present a paper at a Literary Conference that her Honors English Class organized.  The conference was on feminism in literature and her presentation was on the Harry Potter novels by J.K. Rowling.  I am sure I would describe her paper/presentation wrong so I won’t even try, but needless to say it was well received by the audience and Meg and I had a very nice chat with her Professor that she has been working with all four years at IC.  While we were there Griffin spent the night with Carolyn her boyfriend, Wojceich, at Carolyn’s apartment.  Griffin had a great time playing with them and also with Carolyn’s cat Ollie.  Griffin had so much fun that he slept most of the drive home!  We have done several long trips with Griffin and many short around town trips that he is really enjoying time in the car!