I think I took a double dose of these today!
So I started my treatment today and apparently when I set up my machine I failed to turn on the warmer that warms the dialysis fluid before it goes into the artificial kidney. So my blood was flowing thru cold dialysis fluid. Usually it takes around 45 minutes to warm the bag of dialysate that is sitting on the warmer but today it took it about twice as long since I was mid treatment before I even noticed that the warmer was not on. So I completed my treatment drinking hot tea, wrapped in an electric blanket on high, and, with a wool cap on, plus Meg put a hot water bottle onto the bag on the warmer tray. I have made this mistake before but then it was August and I was in West Virginia and it was like 90 degrees out. Today I found out this mistake when I realized my temperature had dropped and I was freezing all over.
Half way thru the treatment we got a call from Carolyn at Ithaca. She had just also emailed us that she made the Dean’s list for the first semester. We knew she had gotten good grades but hand’t heard from the school on Dean’s list yet. We also were just informed that because she had like 16 AP Credits in High School she is officially a sophomore now!
So my office has decided to throw a party for me and while I really appreciate the gesture it was totally unexpected, and I am still not sure how to react. My plan from the start, had been to go on to Long Term Disability and kind of sneak away into the night! I am hoping to return to work, somewhere within the BSA, after I am able to receive a transplant. I really miss both the people I worked with and the volunteers. I have plans to occasionally visit with people at work for lunch and/or happy hour and to also visit District/Council program events to keep in touch with the volunteers. Plus spending 3.5 hours a day on dialysis treatments I am in touch with everyone thru social media sites and instant messaging. My wife and daughters all think it is a great idea – in fact Kate is going to come home so she can attend the party. I have spent 26 years working for various councils in CT and NY and in my mind I still have more to contribute and hope to get back to that as soon as possible.
However the party is this Friday in Norwalk! I am sure it will be a great time and am expecting some good natured ribbing and undeserved adulation. I am nervous about how I will react but at the same time excited to see everyone again. Hopefully I will have a report next week on how it went.
So my treatment last night (Sunday) took an extra half hour and I got to put an extra needle in my arm – lucky me! Putting these needles in my arm is a daily torture. I have to put in two needles (16 gauge, 1 inch blunt buttonhole needles); one to take the blood out and the other to return it. Think of putting the ink cartridge of a bic pen into your arm. It must go in at the same angle and direction each time to get to reach the vein. My venus hole (return blood) goes in fairly easily and with only a minimum of discomfort. My Arterial hole (withdrawal of blood) is a very different story. I start about an hour before the needles go in with putting some Emla Cream (lidocaine) on both button holes. This helps to eat away the scab and the skin film that forms over each hole. It also seeps into the skin and helps to numb the hole so it hurts less (supposedly). Then it usually takes anywhere from 6-15 minutes to get the needle the 1 inch into my button-hole and pops into my vein. Most days this is the end of it but when I started my treatment last night the machine kept stopping due to a blockage in the base of the Arterial needle. So I had to take out the arterial needle and start again. After putting in the third needle in (only took another 9 minutes of pain) I did have an uneventful run but it is a pain to have to re-needle my access. But my arm still feels like a pin cushion and I have this habit of poking and bumping my access right where my needles go in – ouch!
So the rest of my weekend was great. Long day on Saturday driving to Ithaca to see Carolyn. The swim meet was great – both the Ithaca Men’s and Women’s team won vs. Alfred. Carolyn swam the 100 Free, the 500 Free and in the 200 Free Relay. She wasn’t happy with her times but the unbiased dad in me thought she did very well. After the meet we got to visit with her. We went out to dinner and then took her shopping at Wegman’s (I miss shopping at Wegmans) to stock up with snacks for her dorm (all fruits and veggies). Then we returned her to her dorm and started the long drive back. We had to drive thru snow both ways thru the Catskills it was fairly light snow and wasn’t accumulating on the highway. We got home around midnight very tired but happy to have spent some time with Carolyn. Sunday was the church annual meeting and, as expected, I was voted out of office as Junior Warden. While I feel guilty about cutting my involvement I realize that I must cut back for my own health reasons.
Big weekend ahead – so I have lots to get done today to make that happen. Saturday we are doing a one day drive to Ithaca – swim meet – visit with Carolyn (Dinner and grocery shopping) – long drive back in the dark. Sunday is the Church annual meeting. This is my last meeting as the Junior Warden at church as I am not eligible to run again as per the bylaws of the church. I have done 5 one year terms and am done! I feel guilty in leaving with the current state of our church – rector search taking much longer than it should, budget issues, persistent window leak issues – but there are plenty of great people to step in, but that doesn’t help my guilt. Meg has to be back for this also as the Discernment/Recruitment Committee she is on has an important meeting with the Diocesan Cannon for Transition.
We are looking forward to seeing Carolyn. She was only home for a short Christmas break so she could attend a Swim Team Training Trip to Ft. Lauderdale and then went back to Ithaca from Florida. We Skyped last night and confirmed we are trying to get to the meet vs Alfred. I think she is swimming the 100 and 500 Freestyle events but will have to wait and see. Her classes started this week so she is done with daily double practices but has lots of work to do for class. I think she is happy we are coming mainly because we will take her out to dinner (she is always hungry when swimming) and we will take her grocery shopping at Wegmans – she needs food (mainly fruits and veggies) for her dorm.
Before this can happen I need to get a lot done. Todays house elf duties include Laundry, dishes, grocery shopping, flower duty (Meg has flowers at church this Sunday and I get to buy them today and she will arrange them tonight) and then also a trip to the tax collector to pay auto taxes. Oh and I also have to get in a 5 hour dialysis treatment today and Nxstage called wanting their monthly inventory so they can arrange my next shipment. Sometimes it seems like I can forget my kidney issues but don’t worry, I have the scars and pain in my arm at all times reminding me of dialysis. Also, my struggles with Met Life/BSA continue. Nobody from BSA National or local Council will get back to me with any answers to the questions from Met Life so I still have that stress looming over me.
So since I stopped working and went on Long Term Disability on January 1, 2014 I thought things are going better (physically they are starting to), but then yesterday I just got a letter from Met LIfe telling me my claim has not yet been approved. They still haven’t received the required paperwork from my office – My office says they never received a request from Met Life so I am in this circle between my office, the BSA National Office and Met Life. I am told by everyone that this is only a technicality and that this will be approved but it is very stressful waiting for others to do things. Now it snowed today (we got about 10 inches in Shelton and it was -2 out this morning) and my contact at Met Life in NYC didn’t make it in so I can’t get to the office the paperwork they need until tomorrow just adds to my anxiety level.
I did have two doctor appointments today which added stress but went well in the end. One with my rheumatologist which went very well. My knee pain has not been bothering and doing my knee exercises every day while I do treatments plus getting back to the gym has helped a lot. My second appointment was with my primary care physician. He was very happy with how I am doing generally. My blood pressure was 120/65 at the appt. so he was very happy. Between my primary care doc and my nephrologist they keep lowering my BP medications so I am now on a minor does. For some technical reason he couldn’t do my A1C test but we have scheduled it for my next blood test. I do have to schedule a thyroid ultra sound in the next month but I don’t have anything else until my next blood work in April.
So I am entering my third week of long-term disability and while I didn’t expect major progress I am disappointed in myself in what I have not accomplished. My treatments are going fairly well although my January blood test was not great. My Kt/V level (adequacy of Dialysis) went below 2.0 to 1.85. My doctors are not sure why so I submitted a second blood test for January. My Phosphorus level went up to 7.8 from 5.4 and this is another test that puzzled my Doctors as I haven’t been eating any high phosphorus foods. Before my kidneys failed I had never heard of Phosphorus in food and now it is controlling everything I eat and drink. My other levels that they test for were all fairly good but I am concerned over the Phosphorus level and the Kt/V. Hopefully the blood work I turned in last Friday will show some improvements. I also got a call from the office of my primary care physician. I did a regular blood test on Saturday for an upcoming visit with my primary care physician and his office called (the on call doctor for him) because my Kidney function was very low and they were concerned. Now this test was done after an off day from treatment so of course my kidney function was low. I called him back and told him I was on Dialysis (which wasn’t in my file) and aware of my kidney issues. I think I calmed him down. I am also upset that I haven’t started any of the house projects that I have planned. I realize that it has only been two weeks and I have some significant health problems, but it is still frustrating.
On the good front I shave some more energy and I am able to do a little more every day. I have started going to the gym again and while the cardio (treadmill and bike) is going well the weights seem to stress out my fistula and I can’t have anything mess with my access to my veins. So I have only been working my back and legs and avoiding anything to do with my arms for now. I have been encouraged that I have been able to do more each day and that includes around the house stuff and my Mr. Mom activities. Tomorrow it is supposed to snow (4-6 inches expected). Hopefully it will be nice this weekend as we are hoping to go to Ithaca for the day for a swim meet and to visit with Carolyn on Saturday. She and Kate were only home for a short Christmas visit so we hope to see her this weekend!
So I am slowly adopting to my new life but lack many of the necessary skills of the ‘house elf’. Meg and I have discussed what I am to try to master which includes doing the laundry, dishes, grocery shopping, and cleaning. I am exempt from cooking dinner since that is the time I need to set up for my daily dialysis treatments. I have always tried to help around the house but taking over these activities is daunting. In the past I would go get whatever was on the grocery list, but now I have to create the list which is a different story. I also now have to know what brand of paper towels, toilet paper and tuna fish that we actually use. I have done dishes for years but now I need to know where everything gets put away and stored – which apparently is much more specific than you might think! The obvious solution of less kitchen implements that need storage space (my desire) is not an option – nor is the larger kitchen with more cabinet space (Meg’s desire) a viable option. I need to know the specifics of doing the laundry. It is not enough to sort by color, but also know what gets special treatment, what does not go in the dryer and gulp, what gets hand washed! Patience while I learn everything!