I have been waiting for this day

I finally met with my new kidney dr today.  I was so relieved to be getting a new one and when it got close to meeting him I was just nervous. I guess being with one who in my opinion was horrible for so long I just didnt know what to expect. Well the appointment went great. This new dr is amazing. He is experienced and personable and I was so comfortable with him. This guy seemed to know his stuff. So if your in my situation and reading this just know having a dr your comfortable with can make a world of difference. My 24 hr urine results were 4700. Dropped from 5900 in 4 weeks. I wasnt expecting that. Nice surprise though :) Also my creatinine is staying stable from 4 weeks ago. I am still at 1.3. I was so relieved to hear to find that out. My blood pressure was also great during the appointment but he did raise one of my bp meds just 5 mg to try to keep it under 130s/80s.
I dont have another appointment for 3 weeks. I wont know what to do with myself in that time. But I am happy and confident that things are going to be okay.

16 weeks and gender ultrasound

IT'S A BOY

I am so happy that I will have one of each. And my hubby of course is on cloud 9, he gets his boy. Jaxon Allen Shuman. Now I am ready to shop. And I am feeling upbeat and positive at this point so I think I am going to let myself do that. My appointment went very well. My blood pressure has been slowly creeping up there this past week. But the highest it got was ONLY 147/75. I say only because although that is HIGH, its been worse in my earlier weeks. So the dr has decided yet again not to raise my medicine which is a blessing. The higher the does the higher the risk of baby Jaxon not growing. And so far my little man is doing great. I am 16 weeks and he is measuring at 17 wks 5 days. And his arms alone are at 19 weeks. The tech laughed at that one. Well above scale but mommy and daddy arent so little ourselves. All in all there was no abnormalities they could see on the pictures and it was an overall great appointment. I dont have another OB appointment for 3 weeks and that will be another ultrasound to monitor growth.
I meet my new kidney dr tomorrow and am excited about that. I think that will be another positive in all of this.

When am I in the clear?

When GOD solves your problems, you have faith in HIS abilities; when GOD doesn't solve your problems HE has faith in your abilities.


I think I should live by this quote from now on.  Going through all this and being as scared as I have been has tested my faith in so many ways. I have lost hope and got it back again during this road. I have had so many different emotions in the past few months. I am at times jealous of everyone else who is pregnant and glowing and excited. Mostly because while they are shopping and planning and getting everything together I am fighting the urge and dealing with so much hesitation because it's not as easy for me to do all that knowing the things that I know and that the outcome for me may be very different then most.  It's taking me months to be able to allow myself to get attached or excited about this pregnancy because of all the negative surrounding it. And let me tell you trying not to get attached is actually impossible. I love this baby with all my heart and I havent even met him/her yet.  I bought a stroller.. It was a sale item and I loved it so I jumped at it. And we did a layaway with the crib and dresser.. the whole time thinking if anything happened it could be cancelled.. Why do I have to keep thinking like that? Why can't I just shop and get excited without any hesitation?
I am 15 weeks now. Usually thats "in the clear" for most. That is the time when woman start to really get involved in the pregnancy because the risk for things going wrong drops so much. When is my risk going to drop? I just wanted to vent a little. I am actually doing good right now. I am back at work after a long week off and feel good, tired of course but thats normal.

Definantly not one of my best days

If it's not one thing it's another. I woke up at 3:30am to use the bathroom and noticed I was bleeding. Like a heavy period. So of course I panicked and woke up my husband and rushed to the emergency room. They did an ultra sound and the baby was fine. At 14 wks the baby was measuring at 16wks and moving all over the place. The heart beat was great. But I was still bleeding. They sent me home saying it was due to a low placenta. ???? I emailed my OB and she called me and told me to get into the office so by 1pm I was on my way to the doctor again. Another ultra sound and same thing so I was sent home and advised to be on pelvic rest for a couple days and not to worry. So that is what I am TRYING to do. How do you not worry about bleeding like that during a pregnancy. I am so exhausted. I am thankful that the baby is okay of course. I tend to forget about my well-being and am only concerned about baby. The er doctors did check my kidney function and my creatinine was still 1.3 so its stable from my last check a couple weeks ago. Also the OB dr said he may have seen a little "bud" on baby :). We aren't going shopping just yet but I hope he is right

14 wks today

I know I am posting a lot in one day but I am trying to catch everything up to date.
I had come across a girl on the Northwest Kidney Center's Facebook page who had kidney disease and lost her baby at 10 weeks. I think I was about 6 weeks when I was messaging her back and fourth and of course I automatically thought the worse about my own situation. So I was constantly thinking it was going to happen to me. I hit my 10 week mark and was so relieved to have been there and still be doing ok. And they I hit my 11 week and 12 week and even though my doctors appointments werent going so great I was still carrying my baby and doing okay. Here I am today at 14 weeks. The first day of the 2nd trimester and I am sitting at work doing my blog. Baby Shuman is safe and sound.  I see the dr. every week now to check my BP which is still stable and under the "danger zone" I do not know how the kidneys are doing because I have yet to see the specialist. I have 3 more weeks to go until I meet him and I cannot wait.  I will see my OB again in 2 days and I have another list of BPs for her so I am praying all goes well. I am only working 4 hour days now and I believe that has helped so much with the blood pressure. My husband is also such a blessing. He is working full time and looking for a 2nd part time evening job to make up the difference in my pay. He is taking care of me, Jordan (my daughter) and the house and hasnt complained at all. I love that man!
So Happy 14 wks to me!!!

Pregnant at last

2 lines on the stick!!!!!  I started out by going to my kidney dr and telling him I was pregnant. After all he is the one who said I shouldnt have anything to worry about right? So sitting in his office and telling him I was finally pregnant he acted like I had just made a huge mistake and he had no idea where to go with me from here. That isnt very reassuring for me sitting across from him so I left his office with no advice, no treatment plan just a "see you in a month". What kind of dr is this guy and how has he made it this long? My OB immediatly switched me to a Maternal Fetal Medicine dr which is a high risk OB to monitor me more closely. They started off with the most routine test and labs. Knowing about my history they started me on Lovenox which is a blood thinning shot. So far so good there no problems with that. They wanted a base line to check for protien in my urine becuase of the kidney disease. A normal pregnancy is around 100. I am not sure what those numbers mean but its the amount the protien is being spilled I guess. Mine however was 5000 (Novermber). The nurse practitioner used the word "terrible" when telling me the results. But followed up with "thats the baseline so dont panic." Also my creatinine which is my kidney function was 1.1. That is stable and it had been that for some time before my pregnancy. That number never changed much. The high risk OB said that anything under 1.4 is best for a successful pregnancy. So that was positive. I was told by week 8 or 9 that a delivery by 24-28 weeks is a very high possibility for me due to the kidney disease and BP. I left the office in tears.  My blood pressure was an issue from my first appointment. It was in the 150s/80s range and they dont want to see it about 140/90. They put me on 2 blood pressure medicines and it was still not coming down. The highest it got was 164/90. I panicked, I was so scared and had so much anxiety that the first 2 months, maybe a little more were miserable. I felt terrible becuase the BP was always running so high and I couldnt do much of anything. I was seeing the OB every other week but still had yet to go back to the kidney dr. I was determined to find another one at this point. By the beginning of Decemeber my blood pressure seemed to be coming down to the 130s/70 even in the 120s/70s a few times. I was feeling great. I was more positive then I has been for months and things in my eyes were finally looking up.
Oh but then I go to my dr. first week in January with my piece of paper in hand with all my great blood pressure results on it. I had been keepig track at home and at work. I was so excited. I even had a great BP when they checked it in the office. So expecting a great positive appointment for the first time I quickly realized I wasnt getting off that easy.
My husband and I saw the baby which is an absolute miracle no matter how many times you see it. Baby Shuman was kicking and rolling around and was measuring at 13wks 3 days and I was only 12 wks 2 days along so that was perfect. Doctor comes in and says "Your blood Pressure looks great" Yay I am all smiles... "But I dont expect it to stay like this" Really? Is it to much to ask to just have it good for a minute? And then I get the news that my kidneys are doing worse. My 24 hour urine results are not 5900 and my creatinine is now 1.3. Only 4 weeks after my first results. That is a pretty big jump. The good news is that my great OB dr has found a kidney specialist who is familiar with pregnancies and high BP and I will be going to see him at the end of the month. YIPPEE!!!! I feel better with that because I was not wanting to go back to the old kidney dr at all. So once again I leave the dr scared and nervous and anxious and not at all as positive as I was. They are still talking about an early delivery but I am hoping this new kidney dr can turn some things around.

Not all this again

In June 2009 I got engaged to the most wonderful, caring, handsome man in the world. We were planning our wedding for 2010-2011. We talked a lot about having a baby and expanding our family and decided to get some consults from drs to see how safe and successful it could be for us. So I bit the bullet and called my kidney dr from years ago becuase I knew he would remember me and would already be familiar with my situation. We met with him and I was still as apprehensive about him as always. I asked for another biopsy and he said since it had been over 5 years that that was probably a great idea. I was hoping in the back of my mind that nothing had changed. I wanted the same diagnosis as before Minimal Change kidney disease, because from what I had learned about that was it was exactly what is says it is, Minimal Change.  But of course my luck isnt usually on my side and I seem to be prone to bad news so the new diagnosis came back that I had now developed FSGS or Focal segmental glomerulosclerosis which is scarring of the kidneys. And unfortunantly the scarring part is failed. So over time 50 percent of patients with this disease will need a transplant and there is no cure at this time.
My genius doctor who made years of my life miserable for no reason and who very well could have misdiagnosed me years ago discussed pregnancy with me. He said he did not thing pregnancy would complicate my kidneys any further or make things any worse on them. However he also stated he had never had a patient as young as me. And he had been in this practice for 20 + years. Also this genius had never had a pregnant patient. But hearing him give me the okay I took that as a yes and didnt pay any attention to the fact that he probably wasnt qualified to give me an okay or not due to his lack of experience. We wanted a baby and his answers were good enough for us at that time.
We followed through with a consult from a high risk OB dr who said because of the kidney disease and oh yea I developed a blood clot in my lung in 2004 that it wasnt a good idea to get pregnant. His main concern was the blood clot and I knew there was blood thinners safe during pregnancy so I wasnt concerned about that. Basically if the kidney dr said ok then it was something we could try and would just be monitored very closely.  So with an ok from the kidney dr and a we'll you're going to do it anyway (more or less) we had hope that we would be able to do this and do it safetly under close supervision of many specialist.
We were married in August of 2010 and went in September 2010 for our final pre pregnancy consult with of course another OB. We figured the more opinion we had the more likely to get the go ahead. This dr seemed very positive about us being able to do this pregnancy even with my history. So out came the birth control that day. October 2010 I got my first positive pregnancy test. Now this is when it all really starts...

From the beginning

I have decide to do this blog because when I was going through the process of talking to drs before the pregnancy and even after I got pregnant I was constantly told that I was the only one. That kidney patients dont get pregnant and my drs had no idea how to handle the situation. I had never felt so alone in my life.
I looked for others in my situation and was coming up empty every time. Then I was told about the posibility of a very early delivery and I decided to join the March Of Dimes facebook page and came across someone else who went through it. And who delivered early and succesful. So for the first time I felt hope and that person has really been a blessing for me. I wanted to make sure no one else ever had to feel how I felt. And now hopefully with this out there no one will have to.



I was diagnosed in 2003 with Minimal Change kidney disease while pregnant with my first daughter Jordan. Due to toxemia and pre-eclampsia in my pregnancy the doctors scheduled me for a biopsy of my kidneys after my daughter was delivered.
I was treated with in my opinion are some of the worst medicines out there. I was on Prednisone for months. I do not remember how long but I know it was almost a year if not longer and the only result from that was a 60-80lbs weight gain. I was miserable and none of my kidney test ever came back any different. My doctor then put me on cytoxin which is a form of chemotherapy in a pill form. I was promised to not have any side effects of chemo and ended up losing my hair. Well most of it. Enough that my aunt took me wig shopping. It was horrible. I was depressed and never wanted to leave my house because of the results of these 2 medicines. In 2005 my then husband got orders to England UK. So I called my kidney dr and told him I was stopping all the medications. My labs had never came back any different so neither of these medicines had any positive effect in the almost 2 years I was on them. I was fed up and done feeling like his guinea pig. 
2006 England UK my primary care dr. sent me to a hospital in Cambridge to a kidney specialist. They ran a bunch of test and my kidney function had improved a little since being there and being off all the medicines. That was the last time I had any follow through with my kidney doctors until 2010.