Right after my Transplant!
As I write this (February 22, 2018) it is my 57th birthday! It is very hard to believe but it is true. I am also about 9 days out from the 3 year anniversary of my Kidney Transplant – March 3, 2015. Earlier this week I had my three-year check up with the Transplant Center at Yale, and my Kidney function is doing Great! The morning of my transplant my Creatinine Level (a measure of my kidney function) measured 14.o and right after my transplant it went down to 1.0 and has basically stayed there for 3 years! It has gone as high as 1.3 but basically, it has flatlined at 1.0 and my Nephrologist is very happy with my Kidney Function – BP/Weight etc… are something else – but my Kidney is doing well. I am hoping to get back to walking daily but have been hampered by some extreme pain in my knees. I saw an Orthopedic specialist about this and he has prescribed a variety of stretching exercises that seem to be helping quite a bit. I have started doing some mall walking this week and hope to get back to the gym next week.
Last weekend Meg and I went to see Kate, Kenny & Kiera in Franklin, MA! Keira has changed so much in the month since we have seen her. We had a great weekend. Friday night Meg and I babysat while Kate and Kenny had a date night. Now Kiera was awake when we first started watching her, but she quickly fell asleep in Nana’s arms and stayed asleep for 3+ hours until Mommy and Daddy returned from their date night. Saturday we all (including Kiera) went to the Nadick Mall, basically to exchange some baby clothes that she already had outgrown! Late that day my other daughter Carolyn arrived from Hartford for a visit. She is doing extremely well in Law School and has just landed a summer internship as a clerk for a Federal Judge in New Haven, CT. We all went out for a nice dinner and Carolyn had to leave, which surprised me, so she could get back and do several hours of reading before going to bed – ah to be 22 again! She left just as it was starting to snow, but she made it back safely, and was able to complete her reading.
With my transplant donor – eight days post transplant!
It is hard for me to believe that it has been three years since my Kidney Transplant on March 3, 2015! I feel so much better than when I was on dialysis and am able to more than before the transplant. But I seem to have hit a wall in my energy level. I am not increasing my energy and have definite limits in how much and for how long I can actually do things. I recently took a woodworking class and had to stand for about 8 hours with only a half hour lunch break. After the class, I was in incredible pain and just had zero energy. The next day I was in a similar boat with lots of pain in my legs and feet. I am working with the doctor on these issues. I talked with the nephrologist and as long as my Kidney function is doing well, then he is happy. So I am seeing my Primary Care Physician later in March so I will talk with him about these issues.
So it has been over three months since I last posted and while not much has changed in that time, many things have happened. Meg and I went to Maine for the Columbus Day weekend in October for our 32 Wedding Anniversary and Meg had a long weekend since her school was closed on Monday for the holiday. We went first to Bath, and then we backtracked to Freeport where we were staying for the weekend. It was the Freeport Fall Festival weekend so there were a variety of crafters and bands in and around the LLBean Campus. Needless to say, we did lots of shopping and we ate lots of seafood – lobster, crab, shrimp, cod, scallops etc… We also did a short hike in a state park in Freeport that took us out to the water. At the end of October, we visited with Kate and Kenny again for a weekend of Kate’s Baby Shower. For Thanksgiving, we went back to Franklin, MA, to Kate & Kenny’s and had a nice holiday with them. Meg did have to do the turkey dinner since Kate was just too uncomfortable being 8 months pregnant. I am sure that we did more than this in October and November, but I can’t remember right now.
The big news of December and maybe the whole year was the birth of our Grandaughter, Kiera Maureen Carberry, on December 6, 2017. She was born at 12:30 AM and weighed 7 lbs. 1 oz. Meg and I arrived at the hospital in Boston about 11:00 AM the next morning. Kate was looking remarkably well and especially happy despite having gone thru childbirth and staying up all night. We stayed in their house in Franklin until they came home and then we spent a day with them to help them get settled. We worked to lay in some groceries for them and cook some food so they wouldn’t have to scramble after we left.
We have only been Grandparents for a short time (one month) but I think it is something we are going to take to like a duck to water (especially Nana!). We both already have several projects in the works for Kiera – Knitting, and Woodworking! during the final build-up to Christmas, it was very tough to restrain from buying all kinds of presents for her. We did return to MA for Christmas and spent several days with her and even had our own first stint at babysitting while Kenny went to work and Kate & Carolyn went to see the new Star Wars Movie. She slept for the all but the first ten minutes while nana held her and rocked her to sleep. Then she spent the time in her bassinet until dad got home and she was waking up from her nap. Kate, Kenny, and Kiera are hoping to visit for a weekend in Connecticut with us in January. We can’t wait to see her again and look forward to her visit.
It is fall and that is usually one of my favorite times of the year but this fall seems very different from most falls. This week Meg and I went up to Candlewood Lake boat and cleaned out our boat in preparation for taking it out for the winter. We got all of the cleanings on the inside done and we emptied it of most of the stuff that lives on the boat while it is in the water (PFD’s, safety equipment, maps, registration, extra towels, shoes, dog toys etc), but I can just as easily bring it back to go out again. I am hoping to get out in it again one last time this year. Our goal was to get one last trip on the lake when all the leaves have turned and that may happen or we will get that outing with lots of green leaves, then take the boat out and all the leaves will change! This weekend we are off on a long weekend trip to Maine so if we make it out it will be a late afternoon next week or next weekend because the following Monday the boat comes out for the season.
Our construction projects on our house have finally come to an end – or at least until we think of more that has to be done to the house. The final projects included re-finishing the dining room floor, some misc. electrical work and re-paving the driveway! The dining room floor was re-finished to match the kitchen and the living room so that all the rooms match and you can’t tell when they were finished. They sanded it and then put on 3 coats of polyurethane. It came out very nice and once it was done we put the final floor moldings in place and we built some white bookshelves (Ikea) to go next to the fireplace and give the appearance of built-ins. Now we just need to make a rug decision and I have to re-finish two plant stands that are pretty substantial and an old kitchen table of my parents that my dad built that we will use as a dining table. The electricians came and connected the new chandelier as well as hooking up the two new outdoor sconces by the front door. The electricians also fixed a problem with the outdoor outlets and driveway light post that happened when had the vinyl siding installed.
Re-doing the house has been a very long process but it has been very rewarding. Since the middle of June 2016, we have constantly had some work going on or we were in the planning stages and getting permits to do the work. Our goal was to make our home our ‘dream home,’ and while we have much improved our home it isn’t to the level of the Merritt Island Dream Home, but it is vastly improved. We haven’t really done anything to the bedrooms and we hope to tackle them at some point but we can really only replace the trim and paint, so I guess Meg and I will tackle those projects.
This weekend Meg and I are commemorating our 32nd Wedding Anniversary. We were married in West Virginia on Columbus Day Weekend and while it was on October 12th, Meg does have this weekend for a long weekend so we are heading to Maine for the weekend. My Grandfather and his second wife, Helen, lived in Maine and when I was young and we visited them every year 2-3 times each year, so I have been to Maine many times. Meg and I did a couple of trips to Maine when we were first Married but haven’t been back together since around 1987. I did go with my daughters on a Church Mission Trip to Calais, Maine in July 2008. We are going to stop first at Kate & Kenny’s in Franklin, MA and leave Griffin with them and then on Saturday morning, we are off on our weekend adventure. No real plans except for some shopping at LLBean but we are hoping to mosey up the coast. I am sure the change will be incredible since our last visit!
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.
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.
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.