The week started out great but took a bad turn. Last weekend Kate and Kenny came to Shelton and we had a great visit. We made a bunch of wedding decisions, opened some very nice wedding gifts, and organized the seating for the reception, which went much quicker than I expected. Then on Sunday Carolyn returned from her semester abroad in Granada, Spain and one the way home from JFK we met Kate & Kenny at the Dinosaur BBQ in Stamford for a welcome home dinner! Carolyn had a great experience in Europe and is already exploring possibilities of returning to Spain after graduation. Monday Carolyn was working with the Perry Hill School Marching Band for the parade and Kate & Kenny had to return to Milton, MA. In the afternoon we went to a friends for a combination birthday party/Memorial Day picnic and we had a great time. Tuesday morning Carolyn and I got to work on the myriad of items we had to get accomplished for the wedding. There are a lot of items that we have decided to do DIY rather than renting or purchasing.
On Tuesday mid afternoon I noticed a swelling on the side of my face, under my ear. I first thought it was like a bug bite but it was fairly small so we just put some ice on it to see if the swelling would go down. At dinner after like two bites I couldn’t eat anymore due to the pain and the selling ballooned up to like the size of half a baseball. After dinner I called the transplant center at Yale and explained the situation and they told me to go to the ER. At 8:00 PM we went to the Yale New Haven Hospital ER because they would have access to my kidney doctors and anything that might affect the kidneys is of major concern. Obviously the ER felt the same because when we got there the waiting room was full but I was taken right in and saw a doctor within the first three minutes. The first thing done was to take a blood test to determine if my Kidney Function. They wound up doing two blood tests of kidney function and both came back and showed great kidney function. The doctors didn’t find any evidence of a bug bite so they ordered a CT Scan which I finally had done at 1:00 AM. Then we had to wait three and a half hours for the results during which time I was examined by an ENT Doctor who consulted with the kidney staff. Eventually it was determined I had a viral infection of the parotid gland (gland that produces saliva) and because of the recent transplant and fear of damaging my new kidney they decided to admit me so around 6:00 AM I was taken up to the Kidney Ward, the same ward I was in after my transplant.
The course of treatment was pretty straight forward – I had to suck on sour foods (lemon wedges and lifesavers), I had a mouthwash with antibiotics in it, warm compresses and then a drip antibiotic. I was also on a saline IV so as not to get dehydrated and had to drink lots of fluids. Nothing particularly complicated at all but it did take a while to build up and start to work and I had no sleep Tuesday night so I was very tired and it was boring in the hospital. Meg and Carolyn had left the ER around 5:30 AM and were able to get a little sleep. I tried to eat some breakfast but the pain from chewing was just too intense. I was hoping to be released Wednesday afternoon but that wasn’t to happen since the swelling was not going down yet. I was finally able to eat at dinner and had an omelet which I could chew easily since it was soft to begin with. I did get a good nights sleep from around 10:30 PM until like 4:30 AM when they woke me to take blood. then I went back to sleep but at 5:30 AM a procession of visitors came in for vitals, with medicines and various doctors, none of which apparently could make a decision that would let me go home. By this point the swelling had gone down substantially but was still there. Around 9:00 AM my nurse told me I was to be discharged but the orders weren’t in the computer yet. Then I saw a transplant surgeon that wanted to see my wound and how it was healing. He had one of his minions return to clean it up and to burn off some of the dead skin. This did not hurt at all since when they did the initial incision they cut all the nerves so I essentially have no feeling near my wound. I was finally released and Carolyn arrived and we left around 10:45 AM.
We went to the pharmacy in Shelton to pick up two prescriptions – one for the mouthwash and one for a pill form of the antibiotic that I was on in the hospital. I feel much more relaxed at home and that is helping the swelling to go down even more. I have a follow-up with an ENT doctor next week. The frustrating part is while they know what it was and how to treat it, they don’t know what caused it and that is annoying. I don’t know if I ate something or drank something that caused this. I would like to know so that I can avoid whatever I did or ate or drank that made this happen. But I woke up this morning and it seems that the swelling is almost gone!
So it is one month until Kate & Kenny’s wedding and we are starting to get overwhelmed with details. We are trying to track down the last invitations to make sure we contact everyone so we have as accurate a count as possible. Once we know who is coming we get to start with the seating arrangements for all the guests. That is compounded by not knowing a lot of the guests – we don’t want to sit people with people they don’t like etc…. Once the seating is done we get to make the place cards and of course we have decided upon a DIY card that we have to individually cut out – fortunately Carolyn is coming home this weekend and she will be a help in cutting out pineapples and with all the other ancillary details. We also have to make the favor, print programs, gift bags for out-of-town guests, and more that I can’t remember right now – all DIY projects. Wedding gifts are also starting to arrive. Fortunately they came and took away all my dialysis supplies so we are using the pallet in my garage that used to store dialysis supplies and now it is getting full of wedding gifts. This coming weekend Kate and Kenny are visiting and Carolyn is returning so hopefully we will get some things on the list accomplished this weekend.
So my High Blood Pressure problems are continuing. The doctor increased my blood pressure medicine but my pressures seem to be staying high. I go back again to Yale next week to see the nephrologists and hopefully my BP will be getting lower. Right after my transplant my pressure went up but not too high. Now it is hovering in the 180/60 to 190/80 area and that is way too high. My doctors tell me they want it at around 130/60. Also this past weekend I spent a lot of time in the yard bending over and picking up sticks on the ground. I woke on Monday with some pain in my kidney, or at least in the area where my new kidney is installed. I called the Yale Transplant Center and spoke with my contact nurse. If the pain continues I am to go to the Yale ER. In the meantime I am to scale back what I am doing in the yard and to stop going to the gym. The pain seems to be less and also seems to be in different places so I am thinking this is mainly a joint issue rather than a kidney problem, but I am not going to do anything to risk any damage or rejection in my new Kidney. On the 1-10 scale the pain is only at around 2 but any pain near my kidney is troubling.
I had my regular appointment with my nephrologist on Monday at the Yale Transplant Center and there is both good news and bad news. My kidney function is doing great! My creatinine level is down to 1.2 which is great. When I went in for my transplant it was at 11.0 and that was when I was on dialysis. It started coming down right away and has consistently been improving until it leveled out about a month ago at around 1.3. I was told that was great and not to expect it to get lower since the kidney I received was 7 years older than I am, but that they (my nephrologists) were very happy with a level in the 1.3-1.7 level. Also on the good news front my scar is finally healing and I am not leaking any fluids anymore. The nephrologist told me that I no longer need the visiting nurse coming twice a week to check on my wound and re-bandage it, that whatever it would need either I can do myself or Meg can help me to cover it over.
The bad news is my blood pressure is way too high and they are concerned about this. It has been hovering at the 180/80 level and they want it at around 130-140/60. They have increased my BP medicine and we are hoping that will bring down the blood pressure but it takes time for that to work. This is a big change for me since while I was on dialysis my Blood Pressure kept getting lower and lower almost to where is was too low. I had totally stopped taking any medicine for blood pressure. Also on the bad news front is some potential joint issues caused by my anti-rejection meds. I have been having some joint pain in my ankles that gets very intense, mainly when I am at the gym or doing yard work. She told me to cut down a little on the walking as I was doing two forty minute sessions at the gym each day. I am still not to do any weights yet, primarily just until I am totally recovered. I am now down to only one session of like 60 minutes and then I will do only like an hour or two of yard work.
This past weekend Kate and Kenny came down for Mothers Day and they were a big help. I had spent a couple of weeks clearing brush that hadn’t been cleared for the two years that I was on dialysis, so I had lots of piles of brush all over the yard. They hauled all the piles into the woods in the back yard and then they cleared some areas I hadn’t gotten to yet. Now my back yard is even larger than before. My yard is kind of a never-ending project. After I get all the clearing done I want Meg want to do some more planting of some ferns and ivy and also we have a dozen bags of mulch to spread. I also have several stone walls that need some selective re-building but I am still limited in how much weight I can lift so I am holding off on the stone work until I can safely lift. Saturday afternoon Kate, Kenny, Meg and I went over wedding details and made some more decisions. Then for Mothers Day we went out for dinner Saturday night to an Italian Restaurant in the village, Aribella’s. It was a great meal and we had a nice visit with Kate and Kenny. Sunday they had to leave early to get back for Mothers Day in MA but they will be back for Memorial Day Weekend when we will have to organize the seating for the wedding reception. Also that is the weekend that Carolyn will be coming home from Spain!
It has been two months since my transplant and parts of the recovery process are going well and parts are not going as well. On the positive side; I feel great as compared to pre-transplant and incredibly better when compared to pre-dialysis. My kidney function is doing very well and it seems to be doing everything it is supposed to do very well. My stamina is slowly coming back. I am walking every day, like 2-3 miles, but I seem to get a shortness of breath when walking up hill or on flat ground after like 20 minutes. I am able to power thru it and continue walking unless it happens while I am doing yard work or walking up hill. My doctor (surgeon) told me that this is due to a continued low red blood cell count. He did start me on an Iron supplement to bring up the red cell count. Also this week my nephrologist put me on vitamin D supplements. My wound that they re-opened three weeks ago to drain excess fluids has finally healed although the visiting nurse is still coming and today I had an overly high blood pressure reading of 180/80. She got all worked up and called the Yale Transplant Center and now I may have to go in on Monday to get checked out. While my blood pressure has been running higher than they want it has not been that high so I am concerned since when I previously had high blood pressure issues I had a stroke.
Kate’s wedding is now under the 50 day countdown mark. RSVP cards are coming in every day and we have started to receive wedding presents. Today, Saturday, Meg and I went to Rhode Island for a dress fitting for Kate’s wedding dress. It was also the start of Kate’s bachelorette party/weekend, so there was a lot of her high school and college friends that descended on this small bridal shop in Warwick. After the dress fitting, Kate and her friends headed off to Newport to party. Meg and I went into Providence to run some errands for the wedding. We are down to the little details to get done.