My story

Welcome to Renal Retentive, my blog about my journey through kidney transplant. I will take a moment to bring you up to speed.

I have had high blood pressure for a few years now, but because I responded so well to the meds my primary care doctor prescribed for me (Divoan), I never really thought anything of it. He also sent me for some bloodwork which unfortunately I never got done. I used to have a terrible fear of needles. I wish now that I had done what he asked, but hindsight is 20/20.

My husband & I found out we were pregnant just before Thanksgiving '07. It was a 'sort-of' planned pregnancy, but we were beyond excited! My doctor of course switched my meds right away to something for blood pressure that was pregnancy-approved. I started on Aldomet in a low dosage. In the following 2 months, they increased my dosage a few times and it seemed to be working OK.

The first week of Jan. '08, I started feeling badly, and my blood pressures at home were really starting to elevate. By the end of that week I was consistently getting readings of around 180/120. We were pretty scared so of course we called our OB. Over the next 2 weeks, they added a couple meds to my regimen. But after those 2 weeks and I didn't really respond, my OB was very concerned. I was also spilling large amounts of protein in my urine, but seeing as I was way too early in my pregnancy for preeclampsia, she had a feeling something else was going on.

I was admitted to the hospital on Jan. 8 '08 for testing and observation. They also started me on some IV meds to try and get my BP under control. I met with a nephrologist (kidney specialist) who suspected that I either had lupus, or FSGS (focal segmental glomerulosclerosis). In order to be sure, a kidney biopsy was ordered. For the record, it was no fun!!!

The biopsy results showed no lupus, but positive on FSGS. FSGS is, simply put, kidney disease.
http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis
http://www.nephcure.org/Info_aboutfsgs.html
They're not really sure what causes it, it can either be genetic, or it just happens randomly. FSGS basically scars the kidneys and leaves permanant damage. My biopsy showed that my kidney function was hovering just above 20%. Turns out that my reduced kidney function is what had been causing my high blood pressures fot the last 2-3 years.

We were also told that after the baby was born, I would need a kidney transplant. Pretty scary news... Husband and I were completely overwhelmed; our whole world got turned upside-down in a matter of a few days. Everything that we had planned for our futures was now uncertain.

I left the hospital after 10 days, and was sent home on total bed rest for the rest of my pregnancy. When I was discharged, I was 13 weeks pregnant. The high risk OB told me that getting our baby here safely would depend on keeping my BP under control, but even that was not a guarantee. We found out shortly after this that we were having a girl, and we named her Amelia Grace.

When I was almost 21 weeks pregnant, I woke in the night to terrible contractions that were almost immediately back to back. Within 5 minutes my water broke; we rushed to the hospital but deeo down we both knew that Amelia was just too tiny and there would be nothing they would be able to do. Amelia Grace was stillborn on 3/11/08 at around 2 a.m.. She was very tiny- around 12 oz. & 11 inches long, but she was perfect & beautiful. The doctors told me after Amelia was born that I had had a placental abruption, which is a result of high blood pressures during pregnancy.

The last 3 months have tested us beyond anything Husband and I could have imagined. We have cried and yelled, sometimes we have taken it out on each other, we have questioned every belief we thought was unshakeable. And we have loved each other more that we ever thought we could.

The greatest desire in our hearts that we have always been sure of is our desire to have a family. The doctors told us that it would be gravely dangerous for me to get pregnant again before I get a kidney transplant. And for the last 3 months, we have had very little information and sometimes very little hope. We didn't know anything about the transplant process and how long it might be- we didn't know if I would be sitting on a transplant list for years, or if we would ever be able to have the family we have dreamed about.

But we have finally gotten things in motion with the Mayo Clinic here in Jacksonville, and I am now on my way to getting on the national transplant list! We began all the testing and consultations yesterday, 6/24/08. I have decided to start this blog so I can keep family & friends informed while we take this journey together.

I must say that i have the BEST family and the BEST friends anyone could ever hope for. One positive thing about this whole experience is that we have come to see how much love and support we have. We have been just amazed by the kindness and selflessness of the people we know and love. I cannot say this enough- I don't know how we could have gotten through any of this without all of you.

So, our journey is really just now beginning. Please continue to keep us in your thoughts and prayers. There are still many obstacles along the way.

All our love,

Erin & Rick