No problems with my sodium levels – I just wanted to use this photo. I have been off sodium for 3-4 years. I don’t add any to any food, avoid processed foods and Meg doesn’t use any in cooking. After a while you don’t miss it and find you use other spices more and you get the same results. Having my own personal food Gestapo – Meg, Kate and Carolyn – has made giving up sodium easy.
So I have been having a series of doctors appointments and they had been going well. In March I had a very good meeting with my nephrologist and got a good report card on my blood work. Then I had a good appointment last week with my endocrinologist. He lowered my doses and then told me my H1C was 6.0 – the best result I have had in years. Then this week came and everything is going the other way.
I saw my nephrologist for my April appointment and my blood test results were going the other way with a much higher phosphorus and Calcium levels. My treatments are going well but he did increase the dosage for my phosphate binders when I eat and he lowered my blood pressure medicine dose. My BP was 90/50 when I arrived at my appointment and I hadn’t taken any of my bp medicines that day. Today I had a followup with my endocrinologist regarding my Thyroid Ultrasound. My thyroid while working fine has doubled in size since my last thyroid ultrasound a year and a half ago. We have scheduled a biopsy for next week to see if this is a problem or not. After the biopsy I have to go back to the endocrinologist. On Friday I get to go to the optomologist to have my eyes checked out – my least favorite of all my doctors. The prescription for my classes hasn’t changed in 15 years so I don’t expect any major changes, I just hate anything to do with my eyes.
Hopefully things are back to normal this week. I had a pretty good Easter weekend with no problems gaining access to my veins. Kate was visiting for Easter and we went to the movies on Saturday – saw Divergent – then dinner at Vazzy’s. Sunday we went to church then home for a nice rack of lamb dinner, with creme brûlée for dessert. We had a nice Skype chat with Carolyn while Kate was still here and then I did a treatment. Today I went to the gym and then this afternoon I had a thyroid ultrasound. I do this ultrasound every year but goat call from my endocrinologist’s office this afternoon – he wants to see me this week despite seeing him last week to review my results. This is making me nervous.
On Tuesday I have my monthly visit with the nephrologist. At this point this is just routine although he mat change (lower) my dry weight. On Friday I go to the optomologist for my yearly eye check. I don’t think I have any changes, but just hate anything around my eyes. So Wednesday is the only day this week without a doctors visit!
So my challenges with accessing my veins continue. Today I attempted to needle my arterial hole four times without success and finally gave up trying. I took a scheduled day off yesterday and had a great visit with my Endocrinologist today and then had to abort my treatment. This is getting very frustrating. After four needle attempts my arm is very sore. The Embla creme worked great for the first two attempts but after that it seemed to wear off and the last two attempts hurt a lot. The plan for tomorrow is to try to dialyze earlier in the day and have my training nurse come and see if she can help with the proper angle and so allow me to hit a vein.
I did have a great doctors visit today. My A1C level came in at 6.0 which is the lowest it has been in years. He didn’t have any brilliant ideas on how to lose weight other than what I am already doing. The doctor lowered all my doses for insulin and he wants me to let him know if I have any low blood sugar episodes and he will lower them more. After the success of this visit I scheduled visits with my cardiologist, optomologist and an appointment for a thyroid ultrasound. I have been putting off on scheduling all these visits and the associated poking and prodding that goes with them. I get enough of that from my nephrologists and my GP so putting it off for a while seemed prudent. Hopefully my nurse can get me back on track tomorrow.
So I was able to dialyze on Saturday and Sunday after missing on Thursday and Friday. Hopefully it will continue and I will start feeling better and be able to get back to my normal routine which includes daily exercise and daily treatments. Kate was in for the weekend and we wound up going out for a nice seafood dinner at the Black Rock Oyster Bar & Grill after church on Sunday to celebrate Meg’s birthday! I originally planned to take off Saturday from dialysis and take Meg and Kate out to a nice dinner but that plan got changed when I had to dialyze on Saturday. Meg is so much more than my wife – she is also my Best Friend, the best mother for our children, and for the past year my care giver. Without her I am convinced I would not still be alive. I certainly wouldn’t have gotten on dialysis without her. She was instrumental in the decision to do the much more involved home hemo-dialysis where she and I do the work rather than going to the center where a nurse/technician takes over. She has put up with dialysis taking over a room in her house and half of the garage with all the supplies. She also has put up with me and all the challenges and surgeries I have had to get my access set and maintained and all the complaining of pain I do while putting needles in my arm. She is now working very hard to make sure we both do everything to make this kidney transplant happen and I will never be able to pay her back for the gift of a new kidney – we will truly be soul mates. Happy Birthday Meg, the love of my life!
So it has been a bad couple of days. My treatments were going very well, actually too good to last and Thursday I ran into a stone wall. It started out fine, I got my arterial (lower) needle in without any issues, the problem was my venus (upper) needle. I couldn’t get in at all. It was like the access track was blocked. I tried for like twenty minutes and then took out the needle and tried to clean the hole and then picked at it again with a fresh pick and new needle. It would not go in. After trying three different needles and an ice pack in between I gave up. Friday we started out and never got going either. I couldn’t get the first needle in, the Arterial (lower needle) despite two attempts and about an hour of trying, so we called my training nurse Wanda. While she was en route we put a heating pad on my arm to get it to relax. She came over and I tried a third time with her help and got nothing so she then put in a sharp needle (ouch!) for the Arterial hole and then tried a sharp for the venus (upper hole) and was not able to tap the vein. So then I tried to put a blunt needle in the venus hole and was able to hit blood. Then when we started the machine the arterial hole pressure was so high it kept shutting the machine down. After an hour of playing with the arterial needle and getting no results, except for lots of pain, we shut down for the day. Did an emergency rinse back to return as much blood as possible to my system. So I have missed two treatments in a row.
The plan for today is to rest most of the day and then Wanda is coming when I start my treatment on the early side (like 4:30 PM) and we will have a late dinner after my treatment (hopefully around 8:30 PM). Originally today was planned to be an off day and my daughter Kate is in town and we were taking Meg out for a birthday dinner. That plan went in the crapper and now we hopefully will have a treatment and then a nice dinner, and tomorrow we will go out after church for a nice birthday lunch! Hopefully my treatment will be successful today!
The problem with missing a treatment is that my blood doesn’t get cleaned and builds up toxins and water in my system since I don’t really urinate it out and have to take off the water thru dialysis. Also I feel awful so I didn’t exercise today and only did an abbreviated session yesterday. One day missed I can deal with but two treatments is a serious set back. I can already feel the change and that makes it tougher to do everything. Hopefully it won’t last and I will get back at it today!
So diet is a big part of treating kidney disease. Watching the amount of Phosphorus, Calcium and Potassium that I take in is important and must be monitored. However I never even heard of phosphorus until my kidneys failed and I ended up in the hospital in June 2012. I had heard of Calcium and Potassium but didn’t know they were bad for me. Foods that are high in Phosphorus include all dairy, all dried beans, nuts, some vegetables like avocados, chocolate, whole wheat, salmon, tofu, dark soda’s (diet coke). Foods high in potassium include salmon, avocados, spinach, and bananas. High calcium foods include all dairy, nuts and broccoli. So I am on a very weird diet where I can’t eat wheat bread, or some vegetables I like and no chocolate and very limited dairy. Buying foods has been difficult as the current nutritional information labels do not include Phosphorus or Potassium, although it does have calcium listed. A new label is being proposed by the Food and Drug Administration. The National Kidney Foundation lobbying efforts were directed at getting Phosphorus and Potassium listed. It looks as though only Potassium will make the new label.
It is a step in the right direction which hopefully will make shopping a little easier. Hopefully in the future Phosphorus will be added to the nutritional label. Right now with all food I ingest I must take a horse pill that is a phosphorus binder that will prevent the phosphorus from going into my blood. I take about 10 of these giant pills per day and along with my diet it is controlling the phosphorus levels in my blood. The calcium and potassium levels go up and down and one month I am told to eat a banana and take a calcium supplement and then the next month it is voodoo.
So my exercise regimen is finally going full tilt. It has been three months of trying to get to the gym at least five days per week. Most weeks I have been able to make that and some weeks I have done even more. When I first started going in January, I could barely do 20 minutes on the treadmill and no weights. I have worked up to where I am now up to 75 minutes on the treadmill and completing over 3.5 miles per day. I usually do it in two sessions with a break in between to do some weights. My weight lifting is confined to machines for my back, legs and abs. I still don’t want to strain my fistula in my arm because that has effected my ability to access my veins for my dialysis treatments. I strained my fistula earlier this winter when I shoveled snow that had turned to ice. I was unable to access my veins and missed a dialysis treatment. Then I felt terrible the next day and missed a day at the gym and then I feel sluggish for not working out and it just snowballs from there. the weather has finally turned nice and I also want to do some outside walking so I may shorten my trips to the gym and then do some outside walking – either on the Derby/Shelton Riverwalk or on the hiking trails in Shelton.
The gym is not crowded at all in the morning when I go there. Back when I went after work it was very crowded. Now it is mainly some other older men and women like me, some young stud lifters and some trophy wives that inhabit the gym between 9:00 – noon. Right now the gym is on the upper level of an ice rink but it is about to close and the club is merging with a club that is actually closer for me to go to starting in mid April and my membership is transferring to that club. I have been trying to be good with my diet as well and at my last doctors visit had lost seven pounds. Today I am doing a blood draw both before and after my treatment and will be setting my doctors visit when I take my blood work in tomorrow. My seriousness in dieting and exercise got much more emphasis in March after hearing that I have a living donor potential for a new kidney. Hopefully all this will pay off.