Daphne at PWS

More Doc Visits

Went to the nephrologist yesterday. My kidney function is calculated to be anywhere from 16 to 22%. My creatinine level has basically remained the same at 3.3 for a year. Dr. Tank is surprised. I did have to ask though if kidney function can go downhill fast. She, of course said yes. Now, I guess I have to be realistic and know that, but at the same time if I take care of myself well, that plateau, I'm sure, can be extended. Everything I read is that this is not a reversible disease. The doctor feels my left kidney half way down my abdomen. That does indicate a pretty big kidney. But the creatinine level or how I'm feeling is what they go by for when to bring out the big guns. I am still feeling pretty good. Yes I do get tired, but my brain still works and now that my hemoglobin has been increased by the epogen, I even have a little more energy. More red blood cells, more oxygen to the brain and body.

My next visit with her is in February.

She does want to extend my anti-coagulation treatment as she thinks it is possible that I have some sort of predisposition to blood clots. That is somewhat of a bummer because those good healthy dark leafy greens have to be limited, or regulated. And of course, it means more appointments, costs, etc.

Yesterday, I had two visits. The one in morning was with Dr. Orwall, the hematologist. I had missed an appointment with her back in
September. Their office staff is hard to get a hold of, no reminders for that visit and I neglected to call to ask when the appointment was. Meanwhile, I had developed a blood clot in my leg and my anemia was being treated with epo and I was starting to feel better. I gave my blood and asked them to be sure to get the order from Dr. Tank for my nephrologist visit next week. I don't like to give so much blood all the time. That worked out and then I had a short visit with Dr. Orwall. My white count and platelets are pretty much the same, but my hematocrit is near enough to normal, at least where they want it to be. They don't want it to go to high because it raises blood pressure and it can cause blood clots. Well, it has done that already. She implied I may have to be on blood thinners while I am on the epo. I will have to ask Dr. Tank. She also gave me a good lecture on my needing to not resist treatment, when I basically refused to get a flu shot. I am waiting for someone to convince me that I need one. Maybe it would be a good idea, but I know what doctors would say, so who do I listen to. I have to listen to myself. (I forgot my camera for that visit.)

The next visit was my introduction to the Transplant Process. Two hours with the social worker and one with the financial counselor. The state of the medical world is that if you have a major medical problem, you need some one to advise you and help you navigate the world of insurance and medicare. I probably know more than most people about insurance and it is confusing to me. Anyway, the first picture is of one of the John's, who is a transplant coordinator. He was very nice and may be the John that navigates me get through all the procedures, appointments,etc. Joy and Jonathan came along to here about the ins and outs of the process. Joy also got to get a picture of her possible role as a donor although that wasn't the point of the visit. So where do I start. First, I would like to know when to start following the path. With all the checkups that I need, and then that the donor needs, it sounds like it will be at least 6 months away. So my big question is, if I still feel as well as I do now in 6 months, why would I need a transplant. What is the optimum time to make a move. I really don't want to move too soon. Is any time too soon? I am one of the luckier patients and my donors possibilities are lucky too that we live in Portland. Oregon and especially Portland have short waiting lists if I go with a cadaver donor. We are close to home for all of the necessary visits, of which there are many after a transplant. Jonathan has time that he can take from work to take care of me. PWS would have to do without me, but there would be time to prepare for that.

The picture on the left is of Cari, the social worker and Lisa, the financial counselor. All the people I met had wonderful senses of humor. Is that how you say that? Lisa knew all of the ins and outs of the insurance, well not quite all, but had some suggestions as to how to work the 2 insurances and medicare. It will add up to quite a lot even with the insurance.

So now they will get all of my reports from all the doctors I have seen in the last two years and from them will see if it is time to go on with all the other tests including another colonoscopy. Oh, goody.

We are having unusual, warm, sunny weather here in the beginning of November. Some trees are bare. It seems abnormal, well it is abnormal.

My energy is up the last few weeks. I seem to be taking more care of myself maybe because I have more energy.

Another Beginning

This week I had to drag myself finally to eating well again. I had been getting into the mindset of what is easy, I can change tomorrow in the tomorrow that never comes. And after one week, the pounds come off, which I know they do from past experience. 3 pounds this time even while drinking a lot of good fresh juice. Grape juice from our yard and apple cider from Fir Point Farms where 1st and 2nd grade have gone on field trips. It makes a difference in how I feel. Or something has been making a difference. Maybe the epogin (sp?) has been finally kicking in. Maybe it was kicking in and I had enough energy to think about changing the diet. Whatever.

I also am getting more into getting things organized at work. Still dragging a little, but more than for awhile.

We are having a beautiful end of October. Sun with some warmth. The smell of drying leaves on the ground. The colors.

Started the photo blog too. We will see how this comes along. It is fun. I am wondering about picture taking opportunities when the light is shorter and the colors are dimmer. We will see.