I Got the First Call
Posted by CherylynK, Feb 12 2010, 10:57 PM
Well, today I recieved a call from the University of Washington hospital to make my first appointment with the Nephrology department. I can tell already it's going to be a paperwork-filled experience. I go to Seattle for the appointment on March 18. There I will meet with a nephrologist , a dietician, a hematologist, a social worker, some surgical staff and the actual surgeon. Wow! Thousands of transplants happen a year and I'm sure they all go through similar things. It should take about four hours and I assume they'll discuss my insurance, also.
What I really want to do is show them all how (relatively) healthy I am, how enthusiastic and happy and willing I am and that they won't be getting any problem from me. My only worry is that they say the wait could be a couple of years, so I hope I can stay that way that long. I guess two years is a long time to me now.
It's funny, but I'm now much more relaxed at work than I have ever been. I'm one of those annoying people who doesn't take a lunch, doesn't do personal phone calls except emergencies, and pretty much just works except for checking my email and talking to people. It's like deep-down I'm afraid of getting fired if I do anything that's not work-related. But now I'm much more relaxed and figure that the worst that could happen is that I'd take an early retirement if they wanted to get rid of me (we're going through some really bad budget crises at our school right now.) I think it's because any problems I might have at school are dwarfed by my needing a transplant and nothing else matters as much. I just have to stay employed long enough to stay insured for the operation.
I have to admit, one of the first things I thought of when he said it could be a 2-year wait is that I'll have to stay on this incredibly boring and limited diet for that long! No tomatoes, no diary products, white bread only, 5oz. of meat a day, no potatoes unless they've been peeled and soaked, no canned goods, no salt, no salt-substitute (potassium), <2000 mg of sodium per day, including that which is hidden in foods so essentailly no prepackaged food. I can have bread, rice, pasta, a little butter, most (not all) vegetables, most (not all) fruit, a little mayo, sour cream for some reason, spices that have no salt in them, no cola but I can have Snapple (hooray!), tea, coffee (non-dairy creamer only), a plain donut. Exciting, huh? Actually, I'm lucky that a symptom of kidney trouble is a real loss of appetite so it's not bothering me nearly as much as it would a "normal" person. I try to look at it as a "challenge" to my recipe file. I love to cook and I almost always homemake everything so this is just a little more stringent. And we found that a restaurant with a well-stocked salad bar is a godsend if we really do want to go out.
But I REALLY hope that the transplant will make this eating style temporary. I was in class with an 82-year-old lady and her family who had to go on this diet--and that's it for the rest of her life because she's not a transplant candidate; she has to do dialysis for the rest of her life. I felt so sad for her, although she was a cheerful and plucky ol' lady.
So, off to Seattle in a month which would normally be exciting so we could make a stop at some fun new restaurant but, oh, well...
The "official" visit
Posted by CherylynK, Jan 27 2010, 08:56 PM
I went to my regular doctor today and gave him the lowdown on the neph doctor's comments, and to tell him that my first follow-up with him was this afternoon. He actually made me feel better in that we are on a very open and friendly medical basis, and "Dr. Blunt" (not his real name!) would tell me if anything were really seriously wrong. So we discussed what I was told at the time and since I have every test I get sent to him also, we looked at a few things and he told me what I should ask the neph about. He also said that the neph will probably be my main doctor for a while but I'll still check in with him every 3 months or so.
The I went to the nephrologist and had my husband come, too. The doctor's a really nice guy and very thorough in discussing tests and he said I need to be on super-duper calcium supplements and Vitamin D supplements because kidney disease can make those low and cause bone problems. Again, who knew? But he was very complimentary about how I've handled my diabetes over the DECADES, and was enthusiastic about how I would do with the transplants.
Both doctors made me fell so much better and hopeful after a fairly depressing evening after the dietary talk. It wasn't the dietician's fault--it just was amazing how an enjoyable activity has become so complicated. But the good thing is, when I get the transplant (notice I said "when") I can go back to my regular diabetic diet which is totally natural and enjoyable to me. I've eaten that way since I've been 11 so it's no big deal. Hey, I sneak madeline or a gingersnap once in a while--I'm human and I compensate for it and it's my fabulous treat. It works out fine.
Now I have to wait about 4-6 weeks for the University of Washington Hospital to call me and they will get me set up for surgery while we all the wait for the "parts to come in".
My First Real Entry Into Another World
Posted by CherylynK, Jan 26 2010, 08:03 PM
Today I had my first "official" appointment at the nephrologist to talk with the dietician because I have to go on a special diet (I found out) because I'm technically in kidney failure (not completely, but for all intents and purposes). Being diabetic, I'm used to most of it, so I don't think it will be that odious to me, but it will put me at odds with my husband, because he should eat better but he doesn't. He eats better than he would if he had never met me but he likes his mass quantities.
But they also explained why certain thngs need to be restricted and what happens if they aren't. Sodium, okay, everybody probably should. Phosphorus? Who knew and what the heck has phosphorus in it? Well, we got a list. And also potassium. I'm pretty much limited to fruits and vegetables (but not all), bread, and probably some other things--I haven't memorized it yet. No cheese, no milk or dairy products, no nuts, no tomatoes, no potatoes unless you peel and soak them for two hours...Sheesh!
The other patient there was an old couple (80s?), who were there with their 3 kids (50s), who help with all the shopping, cooking and dietary and dialysis needs. They were a friendly, funny family and they were taking notes and asking questions. I was there alone because I didn't know my husband could come, but also, I've gotten a less than embracing reaction from my family. My brother was sweet, but he's unemployed and in South Dakota. My sister has said, loudly, for years that just ask, I'll give you my kidney if you need one. When I told her of developments, she went, "Oh,..." and I haven't heard from her yet.
The doctor says that my (probable) dialysis will be considered trasitional becasue he wants me to get a transplant as soon as possible. I'll find out further tomorrow during my follow-up with him.
Next on the list, early retirement or long-term disability? Ugh!