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.

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.

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.

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 .

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.

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.

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.

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.

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.

My brother has almost finished his testing to donate a kidney

My brother Hector came up from Orange County on Tuesday, Nov 18, 2008. He had 8 appointments the next day between 8 and 4 PM. A blood draw, an EKG, a CAT scan, chest x-ray, etc. The Donor Coordinator said that if all goes well, we can have the surgery on Dec. 16th. I am not on dialysis so far, although my doctors are not very happy about that. I will watch my symptoms and blood results closely to decide if I need dialysis before my transplant. My latest results from Nov. 13 are Creatinine 7.03, BUN (toxins) 75, and I have 7% kidney function left overall. The normal range for Creatinine is under 1.2 and normal BUN is under 25. My blood pressure goes up to around 150/105 about 3 times a day. Yarid gives me an Epogen shot for my anemia every week. My blood count has improved a lot. I have to get it every week to maintain my numbers (hematocrit, hemoglobin, etc) from falling again.
P.S. Thank you Brenda for offering your kidney to me, and for all of your advice, and for staying by my side every step of the way. Thank you Hector for the kidney you will give me. I can't thank you enough. It feels good to know how much my family cares and loves me.

About My Kidneys

My kidney disease started in 1997 when I noticed blood in my urine and my doctor said I only had a urine infection. But besides the blood, they also found an abnormal amount of protein in my urine. They did a biopsy in 2001 and found it was IgA Nephropathy. That is a kidney autoimmune disease where my immune system attacks my kidneys as if they were foreign. Doctors said I was stable enough to have a baby in 2006, so they took me off my meds, and I had Chris. But, by the end of my pregnancy, the protein in my urine increased, as well as my blood pressure. They induced me because of preeclampsia, and gave me Magnesium drugs before, during and after labor. My blood pressure never came down, even with a high dose of new medicine (Nifedipine 120 mg/day). As weeks went by, I retained more water weight, but it eventually went away after 2 months. My blood pressure remained somewhat high, but the doctors said I was stable enough to wait 8 months until my next check up. I didn't get approved by Medi-cal, so I didn't get my blood checked until July 2008 at the Davis Community Clinic. The doctor noticed my Serum Creatinine was at 2.56 mg/dL and decided to retest me. A normal number is .8mg/dL. It took the clinic a month and a half to get me seen by a Nephrologist, only after I kept pressuring them to refer me. My Serum Creatinine went up to 4.0 in July. They did a new biopsy, a few EKG's, gave me lasix for my high potassium. The biopsy showed scaring, and tubular necrosis from the chronic IgA Nephropathy. They don't know what made it worse. They gave me 3 days of the liquid form of Prednisone in huge doses, through an IV. They gave me an EPO injection for anemia and also a blood transfusion. When I was released, they added Fosamax to my prescriptions, they also added additional Clonidine for my blood pressure, I now take 40 mg of Prednisone each day. A few days after spending a week in the hospital, my blood pressure was 192/111 so I went to the ER, where they lowered it by giving me lasix again, which reduced my edema too. I am on a renal diet. I applied for Medi-cal in July and was approved 2 months later. My husband, Yarid took a month of work to care for me. He doesn't get paid for his time off. And he will have to take more time off after I have my kidney transplant. Plus my antirejection medications will cost me $6,000/month. I am not sure if I can get full coverage for them and my Medi-cal is only temporary. I may also have to do dialysis before my transplant, which would take about 15 hours away from his work time every week. Because he would need to drive me all the way to the hospital and back, and watch our 2 year old son while I am hooked up. I was told to go on dialysis 5 weeks ago but I am trying to hold off as long as I can. My anemia is the biggest concern at the moment because my blood count has dropped down to a critical number (hemoglobin 7.6). If I drop one more number, I will need a blood transfusion. The EPO shot for my anemia takes a long time to kick in and if it works, it will be very slowly. We are trying not to stress too much about our financial problems so we can focus on my health. We are letting God guide us and watch over us. We are asking for any help that can be offered to our family during this hard time.
Thank you and God Bless,
The Acosta Family.