The whole point of my appointment (in my mind) was to figure out when I need to start dialysis. I've been feeling more and more rundown, nauseous and itchy, and I figured we were pretty close now, and my labs agree. My creatinine is 6.3 and my GFR is 7. My potassium is low (which is good for me still) but my BUN is 55.
I brought him up to speed on all things transplant and talked about dialysis. My biggest question was, "When do I start?". Basically, he told me that I'd know when I need to start. Not exactly the answer I was looking for.....I just wish there was a magic number that would tell me that I need it. For some reason, I don't like this decision being in my hands.
I always envision this getting worse, but how much worse is something I don't know? Of course, I thought the same thing about childbirth, and somehow managed to make it to 10cm while at home because I wasn't sure it was time....basically what I'm trying to say is that I'm not a very good judge of this. I always thought my pain tolerance was really low, but apparently it's quite high. The doctor put it this way: my body has had 9 years to adjust to the buildup of toxins in my blood. If you were to put a healthy person in my shoes in a day, they'd probably be dead. My body has just gotten used to the toxic environment over time. He DID say that it would be wise to get the dialysis access done soon though, because it's a bad situation when you're not prepared for it. So, I guess I'll be getting that access surgery done in the next week or so, but I'm waiting for his office to call me back with date/time. Once the access is in place, it'll take a couple of weeks to heal, and then I can start dialysis training after that. My instructions are to call him whenever I'm ready, and he'll get the orders in place. At that point, my care will be transferred to a dialysis nephrologist, likely affiliated with the dialysis center I choose. The group that my doctor is a part of works with Freesenius, but I haven't visited any of them, so I need to try to do that on Monday or Tuesday to see if I prefer them over DaVita.
I wan't sure bout DaVita after my first visit, but this time I went to the facility in St. Louis Park, and it was a MUCH better experience. Joacim came with me this time, and we went through all of the ins and outs of peritoneal dialysis, and my decision was made easily after I asked to see the hemo dialysis needles. Holy HELL!!! They're a HUGE gauge! There's no WAY I could stick that in my arm, and Joacim agreed. We did go into the hemo side of the clinic to see a dialysis machine....it was completely empty at the time we went because it was Thursday (which is an off-day for most) and the day patients were finished. The nocturnal dialysis patients wouldn't be in for a few hours, but the place would be full....there were maybe 30 chairs or so. It's definitely their largest facility.
My application is in for the waiting list for PD (due to the solution shortage) and I hope to hear something on that this coming week.
Based off of how I have felt today, I'm thinking this all needs to happen soon. I have been so cold all day. I spent the day wearing 2 shirts, sweat pants, lying in bed (because the sofa hurts my hips) on a heating pad, with a this blanket and a space heater nearby. It's at this extreme that I'm "comfortable". I've been fighting nausea all day....only managed to eat some scrambled eggs and a baked potato. My weight is down to 138.8lbs as of this morning, and I'm just so physically spent doing the most menial of tasks right now.....it's just getting really hard. Joacim went fishing today, and I spent all day feeling guilty that I set Izzy down in front of the TV to watch movies because there was little else I could do. Ahhhh...more guilt.
Everyone tells me that I'm going to feel better once I start dialysis....my biggest fear is that I won't.
Hi Jenn,
ReplyDeleteGlad to hear that you are choosing PD as your treatment option. I have commented to you before about my success on PD with FSGS. It has been life changing after spending 2 years decreasing in kidney function and a swollen mess. I never want that life again. It seems like you are getting good information. I was really scared when I was getting close to dialysis, I heard horror stories and thought this was the beginning of death. BUT, now I know after being on PD for 3 years and feeling great most days, that I can extend my life the longest with PD and have a very normal quality of life. I still work full time, run around and keep up with 3 children, I hike mountains, walk 3 miles a day, its great! Also, I am sure you have an albumin issue from protein loss...I actually have gone from an albumin level of 1.4 three years ago to 3.2 today. It takes awhile to get it back up but it will recover once you start dialysis because you will not make as much urine, no urine, no protein loss. Don't worry about PD...it will make you feel better and you will have NO EDEMA, its amazing how in 1 week you will be back to normal weight. When you get the catheter placed, the surgeon may tell you about a build up of acites. When you begin filling your peritoneal membrane with fluid you will clean out this acites (protein build-up). Have you ever noticed that the fluid build-up always starts in your lower abdomen?What I learned is that when the abdomen is filled with ascites the fluid has no place to store so it spreads to the legs, arms, face, where ever else. You will remove the abdomen build-up everyday so it won't travel around to the other places. NO Edema!!
I hope everything goes good with your PD catheter placement and training. Oh, one more thing, I swim and take baths by using a 6x8 Tegaderm, it is a waterproof "second skin" that covers the entire exit site and catheter. They are expensive ($30 for 10) but worth the money if you love to do something.
kandykane23
I have nothing that I can share with you to improve a single aspect of this, so I won't even pretend to. I'm glad that it seems to be getting close to have a better treatment plan and I know that you have been struggling with that for a long, long time.
ReplyDeleteMy GFR is still quite a bit higher than yours (anywhere from 14-16), but I was given a very similar answer to you when I asked about how it's determined when somebody needs to start dialysis.
ReplyDeleteThe nurse I spoke to said that "I'd know" when I needed it, and although my GFR was continuing to decrease, the fact that I am still able to work full time and function normally without really feeling ill means that no doctor would say it was in my best interest to start.
I haven't visited a dialysis clinic or anything yet, even though we've talked about it possibly being worthwhile. I just don't want to go there.
Interesting point about our bodies getting used to the toxins etc. I hadn't thought about it like that before, but I suppose it makes sense.
when you do start dialysis, you will feel a million times better, and almost instantly. I also had FSGs, all the horrible memories sound exactly like yours, too. I am only 17, and I can say that having dialysis was the best thing to happen to me. It isn't the greatest thing, as being so young I would hope to have my kidneys, but it is a FAR better alternative than to be suffering for so long. My creatnine reaches 6.9 before I finally made the decision to switch to PD.
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