albumin - 2.3G/DL (up from 2.1)
potassium - 5.3 MEG/L (up from 4.7, but still within range)
phosphorus - 5.7 mg/DL (down from 6.6, but out of range)
adequacy - 2.58 KT/V (up from 2.52)
hemoglobin - 9.3G/DL (up from 9.1)
Overall, I'm seeing improvement, but I think I expected bigger changes, especially with my adequacy. The minimum number to be considered receiving adequate dialysis is 1.7, so I'm well ahead of that, but I had expected that such a drastic change to my program would result in a drastic improvement. Of course, I had only been doing the program for 3 days prior to the test, so hopefully I'll see continued improvement the next time I do it, IF there is a next time. I do these every 3 months usually, but my transplant is tentatively scheduled for November 3rd, so I may never have to do another one!! I'm really glad about the phosphorus one, because that's the hardest one to lower (at least it is for me), so the combo of program change and increasing the binders seems to be working. The potassium is creeping up, and that's the one that can be most dangerous due to the affects it has on my heart, so I'll keep checking on that one.
All in all, things are still going well. I've been on short term disability for 3 weeks now, but I'm a little frustrated in myself at how little I feel I've gotten done. I'm pretty sure this is just me being too hard on myself, but I always struggle with keeping up with my own expectations. I DID visit a lawyer this past week and got the process started on my will, power of attorney and health directive, so that's a great thing to have checked off.
Izzy's back in school, and since I've been home she's been riding the bus to and from school. It's kind of book-ended the days a little, meaning that I don't feel like I can do a lot of spontaneous things in the afternoon because I heed to be home before the bus gets here. I'll work on getting her back into going to after-school care this coming week, but it's been kinda nice to have this as well. She's been able to play with a lot of kids in the neighborhood and is doing great at making friends.
I'm REALLY struggling with exhaustion this week, and I still can't put my finger on what's causing it. I'm going to start giving myself EPO injections at home next week, so I hope this will help things out. My legs feel like they're full of lead, and my blood pressure is higher than I'm comfortable with. Again, going back to the expectation thing....I think I thought that, if I wasn't working, that I'd have energy to do other things at home, but that's turning out to be completely untrue. Turns out, I'm still sick, and I'm still tired, and I'm still incredibly frustrated by it. Today was the first day that I slept in in 3 weeks, and I slept until 1:30pm. Yes, I slept the whole time, and yes, I could've slept more. I figured that I'd do absolutely NOTHING today in the hopes that I'd have some energy for this weekend, since it's my birthday and all. Fingers crossed that my plan works!
Hi There !
ReplyDeleteMy name is Victor. I am also from RA but from South Africa. I am currently emotionally drained and very anxious. My mom passed away recently (16th July), my father now spends life alone in Portugal, I found out I was the reason my wife and I can not have kids and a business venture is going south and I could loose everything I own. I am very scared and feel quite lonely.
Having said that, my wife is absolutely awesome and I think these last few months have shown me just how much I take her for granted. She is currently on a medical mission in Madagascar with Operation Smile. She is a superstar and I believe that with her at my side we will be able to reach whatever best solution we can and build from there - whatever that may be. I need to believe.
Having read your story on RAIN I must say that you have already come a very long way and have achieved a lot. Don't beat yourself up about being slow with your progress and with your recovery. Don't be anxious (I know that's easy to say, I am dealing with that myself). Izzy sounds like she is your rock and your routine and believe me that making it home before the bus arrives is a little thing that you should cherish .... I am sure she does.
Finding a donor in your office was not a fluke. It was your energy that found it and your being positive - remain positive.
I know that you will be fine and that you will see your life through new eyes very soon. Enjoy every day. Enjoy Izzy. Enjoy all the little things .... in the end you will notice that they were the big things.
All the very very best and feel free to drop me an e-mail to vent if you like .... vsoares@ra.rockwell.com
Cheers for now
Vic
Thank you for sharing your story. I was diagnosed with FSGS 21 years ago and my kidney function has been steadily declining. Your experiences scare me a bit but at the same time I am amazed at how strong you are for both yourself and your family. Good luck with everything and I agree....FSGS sucks!:)
ReplyDelete
ReplyDeleteWe are urgently in need of kidney donors in wockhardt hospital India for the sum of $500,000,00,( 3 CRORE INDIA RUPEES) All donors are to reply via Email: wockhardthospital7@gmail.com