The Waiting Room of Old People

Yesterday, I had my 6 month check-up with my nephrologist. I felt very out of place sitting in a waiting room with grandpas using walkers and barley able to hear. I looked the healthiest by far of anyone in there, but still, there I was sitting with the old people. Old people have a smell, have you ever noticed it? No offense to any "seasoned" person reading this. I'm sure if your reading this you're hip enough to have a computer and so you probable don't have the old people smell.

Enough of what the waiting room looked like, I'm sure you want to hear the results.

Everything either remained the same since my last appointment or got better! That's great news! Since I started the GAPS diet in April my protein spill has decreased a lot. It's really bad for kidneys to spill protein and it makes pregnancy even harder, but I'm so glad it has come down. I was spilling about 1.5 grams but now I'm only spilling about 300 mg. I've often been told to limit my protein by doctors and nutritionist but since I started GAPS I have been eating a normal amount and I saw improvement doing that. I also feel better when I eat a normal amount. That was the best news of the day.

My cholesterol also improved a lot since starting the GAPS and I have lost 20 pounds. Another amazing thing is that I have been able to completely stop taking a bp medicine. I wrote a post about how cutting out sugar helped bring it down enough to stop taking 1 but I had to go back up to half the dose because it was not low enough all the time and it sometimes would spike. I started using 2 essential oils last week and that's what has helped it come down. I used some before I left for the appointment and even though it was slightly high while there (130/90) it is normally even higher.

I was also given the green light to get pregnant again. He said I will still be high risk and I will have appointments every 2 months and more lab work but whenever we are ready he is supportive. That is going to mean a WHOLE bunch of doctor appointments because I already see the OB or MFM at least every week. I'm going to need a lot of babysitters. He also mentioned that he thinks my kidney function is very stable and does not think it will decline any more over the next year.

I'm going to be completely honest and say that even though the results were great I went in really hoping to see some improvement in my kidney function.   I'll just keep praying that God keeps me healthy so I don't ever have to worry about dialysis or a kidney transplant. God is my sustainer.

A Quick Kidney Update

I put the orange jug in the fridge and shut the door. Yup, it's time to do labs and, as always, it includes that orange jug of pee. It's not easy to mistake it for juice though, it certainly doesn't look like anything anyone would want to drink from ;) I'm pretty pleased with it, it's almost full. 

I usually get nervous before lab day and the appointment (which is at the end of the month) but I'm really not. I know I've Prayed a Bunch and God is going to take care of me no matter what those labs say. They are just numbers and sometimes I really wonder if my kidneys even know that most of their filters are damaged.

Since I got my last labs done (in April) I have been doing a new diet. I started GAPS in April and its an anti-inflammatory, low-carb diet. I did gluten free/ dairy free when I got pregnant with Baby M and this is very similar. I can eat cultured dairy now like yogurt and cheese but I have removed all grains from my diet. I can't say I feel a lot better but I have lost a lot of weight. I also have more energy and I think that's a pretty big deal since my biggest symptom of lupus is tiredness and I have a baby to take care of.

There is a book that goes into detail about the diet and it was really interesting. It talked a lot about the gut and how so many things can damage it. Almost everything that can damage it I have taken, like steroids (took to stop the kidney disease from progressing) antibiotics (I got sick a lot as a child) and the list goes on.

I've also tried acupuncture in the last few months. I didn't really like it and so after 2 sessions I decided not to go back. I just had a feeling about it. 

One thing I've seen a lot of lately and I am researching is Essential Oils. I'm going to start slow with it though. Hubby is a little nervous that they won't help and so we don't want to jump in and spend a lot up front. I did find this though:Olivia's Oil Testimony A testimony of how they help one fellow FSGS patient. It's a pretty amazing story!   

Why I Don't Want A New Kidney

I had a friend ask me why I can’t go ahead and get my family tested to see if anyone is a match for a kidney transplant. It’s a great question and one that I have been asked before so I thought that I would answer it on my blog today.

Scar from kidney transplant. Check out this cute blog, she has lupus like me too.

Check out her blog here:FlowonLupus

The quick answer is that while it sounds like a great solution, it’s really a double edged sword. Once I get a donor kidney, I will have to start taking anti-rejection meds for the rest of my life. These meds are no walk in the park and have serious side effects. Also, the kidney does not last the lifetime of the recipient, I know of one person that has had her kidney for 20 years now, but the average is much less.

A lot of people find it interesting to learn that the diseased kidneys are not even removed during the transplant; the new kidney just gets placed (normally in a different location) and the old ones are left. The reason for this is that even if they are only functioning at 5% they are still helping filter blood. As they die and stop working completely the body just reabsorbs them. The surgery to remove the kidneys would also be very invasive.

Currently, my kidney function is around 25% which means that for a person with healthy kidneys their blood is filtered through the kidneys about 8 times an hour and so for me it’s a lot less. In order to be considered for a transplant, my kidneys would have to be in failure, and I would likely have to start dialysis while the search begins. Sometimes, I wonder if my kidneys even know they are sick because most days I don’t feel like I have a serious disease. They are just down there doing their thing at a much slower pace.

The procedure is really tough, requires a long stay in the hospital, and is something I hope I can post pone for as long as possible. In fact, I’m waiting for advancements that will reduce the anti-rejection meds, and who knows how long that will be. Lastly, I'm praying for complete healing.

February 26, 2014 Doctor Appointment Update

I’m normally so nervous leading up to an appointment, but today I had an amazing amount of peace and calmness. It’s easy to be nervous when I go to appointments, it’s not as bad as I’m sure it would be if it were a check-up for cancer, but it’s pretty close. I’m always scared that I’m going to go in and hear that my function has dropped and I’ll need to start dialysis soon. I also feel so out of place when I’m in the waiting room and look at all the retired men and women who must be in their 60’s or even older. Many of them have obvious degenerating health but there I am, young and healthy looking (this is how I see myself anyways). It gets even more awkward when they call me back and ask me all the usual questions like: are you experiencing swelling in your legs, feet, ankles, or blood in your urine, or… the list is pretty long. Then they go over my medications and make sure nothing has changed. After I answer all these questions with the nurse I have to go and wait again. I’m sure your thinking to yourself right now, how long am I going to have to wait for this update…

Today, I saw the nurse practitioner and the doctor. I really like the NP, she is nice, soft spoken, and seems to have a really good understanding of kidney related issues. I met her in the hospital after delivery and today was the first day I had seen her since. She said that everything looks stable and it seems like my function has returned to base line for me. When I delivered M my creatinine had jumped to 3.03, it went down about 3 months later and today it is still where it was 3 months ago. The best news is that my protein spill came down to less than 1 gram (950 mg). She said that we can start trying to have another baby as soon as we are ready and everything looks fine to try again. My neph came in next and looked over my labs and said basically the same thing. He added that we would stop the Enalapril at my next appointment and then we can start trying to get pregnant then. He was happy with all the lab results and I’m happy that my protein came down. Even though my function did not increase it stayed the same over the last 3 months and that’s still really good news.  

I’m happy with the results and I feel relieved that my function is stable. We all agreed to talk about trying again in 6 months and for now I am going to try not to think about it too much. Getting pregnant can easily consume my thoughts, but I have more important things to focus on for now.

Kidney updates from last year:

http://2kidneybeans.blogspot.com/2013/10/october-22-2013-dr-appointment-update.html

http://2kidneybeans.blogspot.com/2013/08/kidney-update.html

It would make my day if you would "like" my Facebook Page for 2kidneybeans https://www.facebook.com/2KidneyBeans

Appointment Anxiety

My follow-up appointment is just 2 days away. I'm getting so nervous; it’s like I fear I am going to go in and he is going to say my kidney function has drastically declined. It’s very unlikely though, so I don't know why I am always so nervous before appointments. I actually feel like I'm doing a lot better here recently. My OB-Gyn was also more optimistic about getting pregnant again when I saw him for my yearly check-up. He was very impressed my protein was negative; he didn’t expect my kidneys to recover so fast. So I don't know why I am so nervous. Maybe it’s because I'm scared he is going to tell me I need to take prednisone or some other horrible med. Again, it’s not likely. I'm expecting that I will either hear that I have some improvement, or none at all, but I doubt that I would hear that I have had a decline. 

The reasons I think I have improved are mostly due to that fact that at my last spot-check for protein the test came back negative and this was in April. What that basically means is that after Malakai was born due to high levels of protein and sudden onset of pre-eclampsia, the doctors at UAB did not think I would recover this quickly (or at all) and had told me it would be unsafe to try again(due to the sudden decline in function). Since the protein has gone back to negative meaning there is none in my urine, my kidneys can start to recover from their loss of function. I hope that I see recovery when I get my results back. I know I have friends praying for a complete recovery, and that would be an amazing answer to prayer.

I've been going over some of the questions I want to ask him in my mind:

What are more specific signs of protein in my urine? My kidney support girls and I have been discussing this one a lot. We know that bubbles mean there is protein in our urine, but when I googled it, I read that it’s normally foamy and looks a lot like a draft beer, so just a few bubbles is normal, but that really doesn’t help me much.

What creatine levels or GFR would alert us to needing to prepare for dialysis or transplant? http://www.kidney.org/atoz/content/gfr.cfm
My baseline of function hangs out around 40 GFR and 1.8 creatine, but after Malakai it dropped to under 30 GFR and over 2.2    creatine. I also want to know the answer to this question because it’s been a topic with my kidney girls.

What could we do to lower the anti-bodies if we decide to try and get pregnant again? In my last two pregnancies (neither went full-term); I took prednisone to lower the anti-bodies that fight my pregnancies. The prednisone increases blood pressure and since I already have high blood pressure it made controlling my blood pressure harder and I developed pre-eclampsia before I was in my third trimester. I have been reading a book, Is your body baby friendly, by Dr. Alan Beer relating to auto- immune diseases such as APS and Lupus (I have both) and it’s been very informative. We have been so close to having the right treatment during pregnancy but missing little pieces of the puzzle to make it more successful. Dr. Beer suggests using a treatment called IVIG if prednisone does not help. It seems to be a pretty simple and symptom free treatment. It’s very expensive, but hopefully my insurance would cover it. I called last week to have him look into it to see if it would be an option. I’m sure he has since he is on board with us trying again.

Are my current medicines safe for pregnancy? The medicines that I am currently taking to control my blood pressure are doing an absolute fantastic job, not to mention I am feeling somewhat normal only having to take them once a day and its only 2 small pills. They were prescribed by the MFM at UAB after I delivered Malakai and had planned to pump breast milk. Since they said its safe when pumping I would also think they would be safe during pregnancy, but I need to be positive.

Would you recommend I see a Reproductive Immunologist? If he still supports us trying to have a baby again, and he thinks the IVIG treatments would not harm my kidneys I think it would be a good idea to have a Reproductive Immunologist give us a detailed treatment plan for the next pregnancy. There are only 3 well known and highly respected reproductive immunologists in the US and they are all out of state. Sounds like a good reason to take a vacation to me.

Can you think of anything I should ask?