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.
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 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!
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.
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!
Construction on the addition started and was going great until the winter finally caught up with us in Mid-March. The old porch and foundation have been removed, the foundation has been excavated and the footers and the walls have been poured. Then it snowed and we were in a holding pattern but they returned after two days to uncover the walls and then to waterproof the walls and the top of the footer. The building inspector has approved us for spreading the back-fill, but we must wait for the snow that is on the pile of dirt to melt. My back yard, especially where the majority of the fill material is, gets very little sun so this may take a while. The other option is that we shovel off the snow so they have access to the dirt. While we are waiting for the snow to melt, they cut the hole in the basement foundation that will serve as an entrance to the crawl space. Originally I thought they wouldn’t be able to even start any construction until at least the start of spring, so we are still way ahead of our plan. At this rate we may be done before June, so we will get to use our new deck for the whole summer.
Our new puppy, Griffin, is turning out to be an incredible handful, but an absolute joy. He really enjoys the snow. During the snow storm last week we had about 16 inches of snow with drifts in areas up to 24 inches. Griffin had a blast playing in the snow. At first he was a little tentative but he was soon diving in head first and charging all around the yard. He was afraid of the snow blower. The week of the storm my daughter Carolyn was home from college with her cat Ollie and the two of them hit if off after a day or two of getting to know (sniff) each other. At the end of the break when Carolyn and Ollie had to return to Ithaca, Griffin would look all over the house, even sneaking down the hall to Carolyn’s room looking for Griffin. Meg and I miss Ollie (and Carolyn too) mainly because he was able to get Griffin exhausted so that he sleeps at night. Ollie will be visiting for a weekend in early April and then he will be with us all summer starting in late May until Carolyn goes to law school in August.
Of course my surgery to finally remove the cyst from my neck was scheduled for the same day that the storm came, so it was postponed the day before and now won’t be until the beginning of April. The more time that passes the smaller the cyst gets, but they want to get it out so they can make sure that it isn’t growing inwards. Now the cyst has reduced in size dramatically since this photo was taken but we still need to get it out. I did have a major spill in my driveway on the ice/snow and wound up landing on my back. I landed fairly flat and it was spread over my whole back but then so was the pain. It took about a week but now I am fairly pain-free except for the arthritis in my knees. I did have an appointment with the transplant center in early March. My kidney function continues to remain at 1.0 and my prograf level is also doing well. I asked if I could stop the prednisone but the answer was no and they may even increase it. It will depend on my next blood test which is not until the beginning of May.
So this week is the two-year anniversary of my kidney transplant! It is hard to believe it has been two years since the transplant and so much has happened to both me, and my family. My kidney disease was a long developing problem that started with my diabetes and at some point I was prescribed a BP med that kind of put me over the edge and shut down my kidneys, but I drove myself to the edge. My lowest point was during the winter/spring of 2013 prior to starting dialysis on May 2, 2013. The transplant was a long involved process, but as I’ve detailed that process in earlier blog posts, I’ll skip to my transplant on March 3, 2015! It came up very suddenly and involved 4 women donating to 4 men. All 8 surgeries done on the same day at Yale New Haven Hospital. It has been two years with many ups and downs (health wise), and many ups in my personal life! Many thanks to everyone that made this possible but two people really stand out. Meg – the love of my life – was with me thru my dialysis and helped me to put two giant needles in my arm every day, sat with me thru hours of dialysis and then gave a kidney to a stranger so that I could receive a kidney. And also my donor, Patricia, who just wanted to help someone by giving the gift of life! I will never be able to thank these two enough!
This past weekend WE picked up our new puppy – Griffin! By WE, I mean a large contingent that included Kate & Kenny, Carolyn and her boyfriend – we kind of descended upon Fox Creek Farms like an invading army. We spent the night before in Hagerstown, MD and my sister Carol who came up from Washington, DC. We had a very nice visit and night out for a very nice dinner. Griffin is a Goldendoodle that was born on 1/1/17. At only 8 weeks old he is still very little (weighs only 5 lbs.) but is very cute and lots of fun. He was pretty quiet on the ride home and alternated sitting on Meg and Kate’s lap, but did get active when we got home. This week, during the day, it has been just Griffin and me at home working on housebreaking and all the other puppy activities – learning not to chew on everything, playing games, and lots of sleeping. He sleeps in a box next to our bed, mainly for housebreaking, so if he cries too much we can take him out at night. It will be a long several months until this process is complete but we will survive.
Our Spring construction project began today (March 2, 2017), with the taking down of our old back porch. It was taken down today and the next step is to take out the foundation and dig out the ground for the new, and bigger, foundation. The dumpster was also delivered today and hopefully the excavation starts tomorrow! When complete it will be a 16′ x 20′ addition with a 15′ x 10′ attached deck. The addition will be our new living room and what is now our living room will become a formal dining room. We have been thinking/dreaming/planning for this since we bought the house 13 years ago, but it wasn’t until the 2016 HGTV Dream House win that this became anything more than just a dream.