Got a call this morning from the YaleTransplant Center. They called looking for Meg but agreed to talk with me. They called to give Meg the results of her tests and wouldn’t speak to me about the results, but they did inform me that I have been listed on the transplant list although it is still conditional upon my having to loose about 20 lbs. and completing some of the other tests they need. They promised to call Meg over the weekend with her results. The rest of the week has been spent just catching up on things.
I was hoping to complete my taxes this week but it turns out I don’t have all the forms back, mainly still waiting for the K-1 forms for partnerships that apparently are not due to me until March 1st. Also this year I think I need some professional help with my taxes as I don’t really understand all the forms I have been sent and don’t want to screw it up this year. I should be able to get Kate and Carolyn’s taxes done this weekend since they are not that complicated. Also this week I completed the FAFSA forms for Ithaca College. I will have to update them when my taxes get finished but that was always going to be the case. This was a unique week in that it is the first week this year that I didn’t have a doctors visit of some kind. I did take a blood sample in today to the dialysis center but no poking and prodding this week.
In addition I completed treatments on Tuesday, Wednesday, and Thursday and I went to the gym every day this week for an hour of cardio and some weights. I am still afraid to stress my arm out so I have mainly been concentrating on backs, legs and abs in the weights I choose. I need to start pushing my workouts so I can lose some weight but I don’t want to upset the fistula in my arm and mess up my treatments. It is a balancing act – when my treatments go well I have the energy to go to the gym but at all costs I need to make sure I don’t do anything to mess up my treatments.
This past weekend was my birthday – I turned 53 on Saturday. I have always felt honored to share my birthday with two men I greatly admire – George Washington and Robert Baden-Powell. Not that I in any way compare myself to these individuals but I have always admired both their accomplishments and how they lived their lives. In growing up – especially in New England – we learned about Washington and I have also visited Mount Vernon and was fascinated by its beauty and innovation. Having worked for the BSA for years BP is a fixture but it wasn’t until I read the biography of BP that William Hillcourt (Green Bar Bill) wrote – Two Lives of a Hero – that I became enamored of his accomplishments in India and Africa, not to mention his work with Scouting.
I felt pretty awful on Saturday, from low blood pressure issues, but still had a nice visit with Kate. We all had a nice Lobster dinner Saturday night with Creme Brûlée for dessert. Sunday we went to church and then had an early dinner so Kate could head back to Rhode Island. We also made some preliminary plans for a family vacation for the last week of June this summer. Between my health issues and family concerns, our vacations have been limited to trips to West Virginia it seems like for ever, but this year we are hoping to do a week at a beach cottage in Rhode Island or Massachusetts. Not sure yet but I think we know which week we can all make it now I just have to find a place.
Traveling on Dialysis is possible. I just need to take my NextStage Machine with me, make sure I have all the ancillary supplies and have NextStage deliver bags of dialysate, cartridges etc… to wherever we are going. We did this last summer when we emptied Megs mothers home in West Virginia so we know what that it is possible. One of the few benefits of my mode of home hemo dialysis is the ability to take it with me and be able to continue my treatments on the deck looking over the ocean – at least that is my goal.
Apparently I had a dream/nightmare the other night but I don’t remember any of it. When I was a teenager I would wake up in strange places and talk in my sleep or play games with my radiator. Once I remember waking up in the bathtub taking a bath with only like two inches of water in the tub. But other than occasionally waking up from nightmares or some talking in my sleep, I hadn’t done anything noteworthy in years. I wouldn’t even know about it except my wife told me about it. My talking/complaining about the pain woke her up and she thought she was talking with me since I can answer her questions while dreaming. How she tolerates me at all is still a mystery but that is a subject for it’s own post – back to the dream/nightmare.
In the dream I was complaining, loudly, about the pain in my arm from my training nurse putting in sharp needles for a new button-hole. I have had three button holes put in since last May and it is a very painful and extended process. It takes about 7-9 sticks over time, with an incredibly sharp needle, to create a button-hole, each thru the same spot at the same angle to create a hole that is similar to an ear-ring hole. This dream happened right after I had some difficulty last week accessing my arterial hole for treatment. The next day my training nurse came by to watch me insert my needles and made some suggestions to improve the process. She also said if the problems persist I might need to have a new button-hole created. I think this is what triggered the dream. I have been accessing my veins with only moderate pain and challenges, so I think the fear of new button holes is put off for now.
Meg and I went to Ithaca this past weekend to visit Carolyn and see her last swim meet. Friday night we stayed home for my treatment which didn’t go so well. I am still learning the new angle for my arterial button hole and the first two attempts missed. I did find it on the third attempt. I also have been having low blood pressure issues during treatments this past week. Thursday I wound up doing BOLUS (infusion of 100 cc of saline into my blood). Thursday I had to do this 5 times to get my BP back up. Friday I only had to do one at the end of the treatment. Saturday we left for Ithaca around 7:30 AM and got to drive thru the catskills in a snow storm.
Although Meg and I lived for 15 years in Central New York we had forgotten what the winters are truly like. It was cold and windy in Ithaca. The swim meet went very well with Carolyn getting best times ever in the 50, 100 and 500 free. She also swam in two relays – the 200 and 400 free relays. After the meet we went out to dinner with Carolyn and then to Wegmans for groceries. Then back to the hotel to rest. Sunday we took Carolyn out for breakfast at the Ithaca Bakery and then left her at her dorm and we left Ithaca around 11:30 AM. the ride back was snow less.
Wednesday was my initial screening with the Yale Transplant Center at Yale New Haven Hospital. Meg accompanied me for this very long and somewhat overwhelming experience. We got there around 7:30 AM and it lasted until just after 3:00 PM. It included an initial check of height, weight and blood pressure, which was cooperating and came in at 108/60 this morning :). Then we were in a conference room for about two hours for presentations by a surgeon, the insurance counselor, the dietician and then the pharmacist. Then we had individual meetings with a social worker, the dietician, a doctor (just an MD not a Transplant surgeon), and the pharmacist to review what medications I am currently on and what would change post transplant. Then I had a blood draw. On the best of days this does not go well from my end. Three different nurses tried to find a vein and failed. So they sent me on to the Kidney/Gallbladder ultrasound, while they called in a nurse from the ER to draw my blood. In the end it was only two needle sticks and they got the blood – all 15 vials – a record draw for me. Meanwhile Meg met with a Doctor about becoming a donor so she had to have some of the initial screening (height, weight and blood pressure). After then waiting for a while we were sent to a different floor for more blood draws for both of us and an EKG for me. I got stuck twice more and eventually they did the draw from the back of my wrist (OUCH!). I still don’t know why they needed more blood or why they didn’t take it earlier when they had me tapped! After this I had a final chest X-ray and we finally were dismissed.
We learned a lot about the Transplant process. The difference between having a living donor kidney as opposed to waiting for a kidney from the transplant list. The improvement you can expect from a new kidney vs. living on dialysis, looking forward to experiencing this! They also discussed at length in both the group sessions and the individual meetings, that the current health of the potential donor is very important and can prevent a good match from being a donor. We also learned some of the finances of this and how I now need to apply for medicare now rather than waiting the 30 months. I also learned that while my BMI (Body Mass Index) is low enough to go on the transplant list it is not now low enough to do the actual transplant so I have to drop about 20 lbs. to get my BMI to where they want it. BMI is also important to the donor as well. We also learned about Living Donor Kidney Exchange where someone wants to donate a kidney to their loved one but it isn’t a match. They can try to find a match for that Kidney and in the process look for a kidney that would be a match. It sounds convoluted but they say it happens all the time.
Overall the visit went well. I still have some more things to get done and more of my regular doctors need to sign off on this but we are moving forward with this process. I have to get the results to Yale from my most recent colonoscopy, stress test, thyroid ultra sound and some other tests. It is not going to happen tomorrow but I am gaining confidence in the transplant procedure and hope to make it happen.
Lots going on this week but my concentration needs to be on my treatments and their success. Since my challenges last week I have had some very good treatments. I changed the angle that I am putting my Arterial Needle in at and that seems to be going well. It is going in faster (5-7 minutes) now and I am also putting the Emla Cream (Pain Cream) on for longer periods before I start putting in needles and I am using a bigger dose of the cream. This seems to be working (knock on some wood for me). This morning I am expecting to receive a shipment of supplies from NextStage for my treatments. This afternoon I have my monthly appointment with my Nephrologist. Tomorrow Meg and I go to the Yale Transplant Center for screening and to find out about this whole Transplant potential.
I am nervous/excited/scared and probably some more emotions I can’t even verbalize. I have been waiting for this appointment for months since my doctor told me in October I should call. I kept not getting any response from the Transplant Center and then around the first of the year we started playing phone tag, finally connecting and setting an appointment for Mid-February. The appointment includes meetings with Nephrologist, surgeon, anesthesiologist, insurance specialists and a complete physical. They require endorsements from my Nephrologist, Primary Care Physician, Dentist, Optomoligist, Gastroenterologist, and my Cardiologist. I will probably spend the next several months updating all my tests from the past several years including a Stress Test (I hate those), echocardiogram, thyroid ultra-sound and probably more I haven’t heard of yet.
I also have a funeral to attend this week for a great Scouter from Westport, Jack Berry, who passed away this week from Pancreatic Cancer. Jack was a great scouter who will be missed. We also have an overnight trip to Ithaca planned to visit Carolyn. Her last swim meet of the year is this weekend and we will have some more time to visit on Sunday before heading home. I also have a bunch of my house elf responsibilities to catch up on. Oh – and I saw a weather report and we are in the band of snow expecting 8-14 inches on Wednesday into Thursday. I love the four seasons but I am over this winter and can’t wait for Spring to get here.
Todays treatment went surprisingly smoothly! After last nights debacle I faxed in my daily flow sheet with the aborted treatment and planned to call my training nurse when they opened. She called me at 9:05 this morning wanting to know what happened yesterday. She agreed to come by for the start of my treatment today so I decided to set up early and she came by around 5:00 PM and watched as I put the needles in. Needless to say I was very nervous putting in the Arterial Needle, expecting a rough time. She told me that my over-exertion shoveling snow yesterday probably forced my muscles around my fistula to contract and thus hid my vein from the needles yesterday. She also had some ideas on the angle of access to my vein and I was able to hit blood in less than ten minutes. It was a welcome sight to see the blood pop into the tube attached to the needle. The run went smoothly from that moment on with no problems at all.
The weekend will see me hoping to attend an event in Stamford for the Powahay District – the Llamapalooza! This will be a one day winter event for Cub Scouts. There will be around 400 boys and their parents and lots of snow on the ground. The activities are both indoor and outdoor but there is a big lunch for everyone – total chaos for the lunch. I can only attend for a little while in the morning as I am committed to a church meeting at noon in Shelton. The rest of the weekend will be spent probably watching olympics. I had hoped to have Saturday as an off day from Treatment and to take Meg out on a date night, but now Saturday is a treatment night.