Wednesday, December 24, 2008

Starting the search all over again

Yesterday, my potassium went back up to 5.9 . My sister Silvia is waiting for the kit to start the testing process for donation. Hector is a last resort option, if Silvia doesn't pass the screening. But they said that if you graded his kidneys for me, they would be a C-. 3 people can have their blood checked for compatibility, from which one is selected to move forward for more testing. I can have 2 more people check their blood against mine right now. If any of my friends reading this would find it in their heart to choose to get tested for me, please email me at baabuni@yahoo.com, to let me know. Thank you.

Sunday, December 21, 2008

Potassium too low

This morning my head became hot and I couldn't hear anything except a loud ringing, and I almost vomited. We looked it up on the internet and loud ringing is a side effect of having a dangerously low potassium level. The new nephrologist, I saw on Monday, Dec 15th told me to take Kionex every day. But it must have lowered it too much. I ate some high potassium foods and the ringing hasn't come back. I started taking protein supplements I read about in my Kidney Disease book by Dr. Walser. I feel a little pressure in my chest sometimes, where my heart is, I hope I am imagining or it goes away. We don't know how to decide who should try to donate. I wish nobody had to. I can't make that decision, I am scared for my brother and sisters. I can't find any info on the internet telling me if it is safe for Hector to donate if he has kidney stones. They told him they are tiny and he has 4 in one and 2 in the other, he never knew he had stones. My GFR last Monday was 5.

Friday, December 19, 2008

No transplant for now

The committee doesn't want my brother to donate unless no other donors are found. They want my sisters to consider donating instead. That means months of more testing. Months of more damage to my body. I give up on rushing them (the transplant clinic), they don't care. They took 2 weeks to tell my brother he had stones when they already knew. And another 2 weeks to take it to committee, just to deny the transplant. All along, not allowing me to test any more donors. Maybe I should go to another country.

Tuesday, December 16, 2008

Transplant cancelled again

The transplant doctor doesn't feel it would be safe for Hector to donate because he has kidney stones. The committee will talk about it on Thursday. I don't think I'll make it more than another week without dialysis, my creatinine is at 9.56 .

Friday, December 12, 2008

New Possible Transplant Date

The clinic received my donor's new info. Big possibility that the new transplant date will be Dec 23. I just need God to help me extra for another week without dialysis.

Thursday, December 11, 2008

Emergency Room


Spent the day at the emergency room at Woodland because my potassium result from yesterday was at 6.4 . Another blood test today showed that it went back down to 5.1. But my BUN went up to 106 from 88 (last Wed). I am taking Kionex powder to control my potassium and seeing a new nephrologist on Monday. My theory is that they gave me too high a dose Epogen for too long, which raised my blood count too much, which depleted my iron and raised my blood pressure a lot. And that must have made my kidneys even worse but the doctor disagreed. I think it makes sense. The ER doctor admitted that he is not familiar with the Epogen drug and neither is my primary doctor. I should have done more research on it. My brother's latest results are not back from out of state so my case won't be reviewed this week, so the transplant is off for now. I hope they tell us the new date soon. My kidneys are getting worse fast.

Thursday, December 4, 2008

Potassium down, Blood pressure up


My Potassium is back down to 5.2. But most of the day, my blood pressure machine shows me an error sign because my pressure gets so high. I left my doctor a message asking for an increase of my new medication but she didn't call me back.
All 3 of us went Downtown for the Tree Lighting and Chris met Santa for the first time. He says he wants to see him again.

Wednesday, December 3, 2008

Delay in transplant plans

My transplant coordinator, Barbara called me today. She told me that they are not sure when my transplant will be anymore because some extra testing needs to be processed for my donor. I won't know what the next step will be until they get new results next week.

Tuesday, December 2, 2008

High Potassium Level

My doctor's nurse called me yesterday to tell me to come in right away for my latest blood results, from Nov. 26, 2008. My Phosphorous went up to 5.6 (normal is 4.5), and my Magnesium went up to 3.2 (normal is 2.5). But the emergency was for my Potassium level, that was 5.9 (normal is 5.3). 6 and above is very dangerous and can stop my heart. An EKG was performed and it was ok. The doctor said I can either go on dialysis or take Kayexalate for 3 days and see if my Potassium lowers. My next blood test is on Dec. 3. She also added a new (this makes 3) blood pressure medication, Atenolol 50 mg, because the first two haven't been able to control it anymore. I just have to watch that it doesn't lower my heart rate too much because taking it with my Nifediac can do that.