My Lazy Kidneys

2009-03-27T11:08:00.000-07:00

Well, today is the first day of starting all the medications. I've been stalling a bit on weaning Brady and wanted to at least make it to 7 months with him nursing. I realized this morning though that I've been hesitating on starting the drugs more than I thought even though I know they will likely help me get my protein numbers back in order. I guess I've been dreading taking them again and was pawning it off on not wanting to wean which wasn't my only concern. I upped my Prednisone from 2.5mg to 20mg daily in hopes that the steroid alone would help and that I might be able to continue nursing but my urine has remained foamy this past week so it doesn't appear to be helping by itself.

The realization hit and I know now that I've started taking the Ace Inhibitor and the Cyclosporine, I can no longer feed Brady, simply not an option anymore which is sad. I'm trying to spend today focusing on getting my kidneys back in shape and trying to remember all the perks of not nursing. Now I'll just keep my fingers crossed that at my next check in, the numbers have dropped considerably.

Back in the (Drug) Saddle Again

2009-03-17T12:04:00.000-07:00

I just got back from my doctor's appointment and am feeling disheartened. So even though my protein spill went from 5.6 to 4.9, it is still way too high which means it's time to take action again. Getting back on all the medications is bad enough news but the part that feels like the biggest hit is having to stop breast-feeding Brady. The plan is for me to take the next week or so to wean him and then start 100mg Cyclosporine daily, 20 mg Prednisone daily and a small dose of an Ace inhibitor daily. The Dr. is hoping if we hit it hard, I'll have immediate results like I did when I was first diagnosed. I asked about Cytoxin because the previous Dr. had mentioned some success with it but this new Dr. said it is even more hard hitting than Cyclosporine and wouldn't really feel comfortable starting that unless we did another biopsy.

My rational side knows that weaning and starting the meds is the smartest thing in the long run - I won't be doing my family any good if I don't keep my kidneys is top working order. I also know that I am so lucky to have been able to nurse at all and that Brady will have received 7 months of nursing benefits. I also know there will be some freedoms that come along with stopping now but to have the decision made for me and knowing this will be my last experience with it, I can't help but feel emotional about it all. I have no doubt I will be shedding some tears over the end of this era and then I will buck up but today I feel like I'm in mourning over this new development.

Long Time, No Write

2009-03-06T11:15:00.001-08:00

It has been ages since I wrote in this blog and this is because of several factors. First, my kidneys have been excellent, reacting to my recent pregnancy better than I could have hoped for so there really was nothing new to report in that arena. And secondly, I have a newborn at home again (well, not so new - he is 6 months already) but let's face it, I'm sleep deprived and haven't been intensely motivated to write.

So in a nutshell, here are the updates: Brady is awesome, a terrible sleeper but adorable as all get out which makes it all worthwhile. His older brother Parker has been a rockstar on the big brother front. My kidneys were doing great up until January at which point I started noticing foamy urine again and slight swelling around my ankles. Also, my kidney doctor who I absolutely love, left her practice after my last visit with her which was a huge bummer in the wake of this new bad news. In January I had 5.6 grams of protein in my urine which was astonishingly high (the highest it's ever been since I was diagnosed was 3.6 and back then I was WAY more swollen.) I met with the new kidney Dr. who was pretty cool and he had me do another 24 hr urine to see if the protein was a bit of a fluke or not. We also preliminarily discussed options if it remains high, none of which are good. Maybe increase Prednisone again (kill me if I have to go back to moon face), get back on Cyclosporine (oh joy, potential future cancer risk not to mention muscle spasms), or start Ace-blockers which sound ok but not good for people with already low blood pressure like me because, as he said, it can turn you into the living dead.

The main thing that bummed me out during this discussion of options though was the fact that all these paths mean I would have to cease nursing Brady and it just plain made me sad to think about. I guess I'm just extra nostalgic about it this time around because I know he is our last child and we'll never go through any of these stages again so I resent the idea that I could be forced to stop breast-feeding. I know that probably seems silly in comparison to keeping my kidneys in full working order and of course that remains my top priority but it still made me sad. Regardless, I guess I'll cross that bridge when I come to it.

The 24 hr urine came back with 4.9 grams of protein - still very high but I was at least encouraged that it had come down and wasn't even higher. I guess I'm hoping this allows me to stall for a little more time. I'm meeting with the Kidney Dr. in a couple weeks to discuss what this means for treatment. I also started acupuncture again which I had stopped in the middle of my pregnancy. It was getting uncomfortable laying on my back not to mention I was getting a little cocky I think because my numbers were so good. Apparently this is my reminder that this disease can and will likely ebb and flow but I can at least be grateful that I made it through my pregnancy and delivery with flying colors and that my kidneys are still functioning at 100%. I know lots of other people out there haven't been nearly as lucky as I have been with this disease.

God Has a Sense of Humor

2008-08-19T15:10:00.000-07:00

So here I am 2 days after my due date and still no baby. Unbelievable - I have to laugh when I think back to the Nephrologist saying she doubted I'd make it past 37 weeks and might have to be on bed rest. Now, don't get me wrong, I'm ecstatic that my health has been great - no protein in my urine the last few months, no preclampsia like they thought I might get and my blood pressure has been perfect. Not to mention the baby is large and healthy. But I am ridiculously impatient at this point and thought for sure I'd be done by now. Parker was 3 days early so I figured the 2nd time around, its supposed to be even faster right? Well, the joke is on me - just God's little reminder that I am not the one controlling all this and life is unpredictable.

I started my maternity leave last Thursday assuming I'd be in labor by the weekend and it has been a blessing and a curse. It's been nice having my days free to hang out with Parker and not to have to drop him off anywhere. On the other hand, I've got so much free time and not much energy to fill it so I tend to focus way too much on the waiting game and it drives me insane to have this kind of time and not get anything done.

I had another check in with my OB on Tuesday where she said I was still 1cm dilated, 50% effaced and that my cervix was softening. She did another "aggressive" exam hoping to bring on some contractions but so far I've felt nothing. The other crazy thing is that she had my due date as the 19th so they didn't have me as officially over it yet. I told her I'd been told the 17th all along and she said that was based on the ultrasounds and she was basing it on my last cycle. She said she would let me go 5 days over and then would induce me but since she is working off the 19th date, that doesn't mean I can go in for induction until Sunday the 24th. Oy vay! I know, I know, I've made it this far so what's a few more days but truly 5 more days feels like an eternity at this stage. Well, at least there is an end in sight if all else fails.

Any Day Now . . .

2008-08-11T14:43:00.000-07:00

So here we are just waiting any day for something to happen. It is such an odd place to be: waiting for a huge event in your life and not knowing when or how it will happen and also knowing there will likely be some pain involved. My due date is the 17th, 5 days a way so technically it could be any time. I had a check in with my OB yesterday and the baby is back to normal position with his head down. The last few times I've been in, he's been transverse with his head slightly off to the left. A huge relief since I really do not want a c-section this time around. She also said I am 1cm dilated and 50% effaced so hopefully that means something will start moving and shaking soon. Did I mention today that I am SO ready to be done??

Big Boy

2008-07-25T11:31:00.000-07:00

Had another ultrasound today and everything looks good. "Fatty" is no longer in breech position which I am thrilled about (I really was not excited about a c-section) and they estimate him at 89%, 7lbs 3 oz. Oy vay - Parker was 7.4 when he was born so this guy could definitely get a lot bigger with 4 weeks to go (they say they can gain 1/2 lb a week in the 9th month). Now watch, he'll be like 6lbs and it'll all be a big lie.

Either way, despite all my complaints about pregnancy, I'm glad to see him looking so filled out and cute in the 3D pictures and just knowing that he and I are both healthy is a huge blessing.

Parker is starting to show more interest in his baby brother recently too which is heart warming. My sister was over the other night and he very excitedly told her he was going to "have a baby brother!" He has also been patting my stomach and asking if the baby is reday to come out yet. The other day I asked him if he was ready for the baby to be here and he said "yes, because I love him." I know just watching them together will be one of the best things to experience and I really look forward to watching their relationship grow over the years to come.

Not So Lazy Kidneys

2008-07-01T11:31:00.000-07:00

My check in with the the Nephrologist was good and she looked at the 24 hr urine and bloodwork I did with my OB at the end of May. Turns out my protein has dropped again to 124 from 360 the last time so I was pretty excited about that. A good sign that it continues to go down even despite me stopping the Cyclosporine. Maybe carrying around "Fatty" is good for my body after all :) She said she doesn't need to see me again until a month after I deliver, barring any unforseen complications. Now the only remaining concern is that once I deliver, my hormone levels will naturally get a little haywire so we're just hoping that doesn't affect my kidneys in a negative way. So far so good!

Little Fatty

2008-06-18T10:47:00.000-07:00

The upside of being considered "high risk" during pregnancy is that I keep getting ultrasounds so they can check the baby's progress. The most recent one at 31 weeks showed this little guy as still measuring large: 4lbs, 13oz and 95th percentile. Oy vay. My OB said she wasn't too concerned but that we should still remember that they usually gain about 1/2 pound a week in the last month and that some things I could do to help would be to eat more protein, less carbs and more exercise. Hmmm, I think that was her subtle way of telling me to get off my lazy butt and chill on the food. She did mention that a lot of it can just be genetics and since I was a 9 lb + baby, this kid may just be following my lead this time around. She also mentioned that she wouldn't order up a c-section just because a baby was measuring big, that they would watch for things to progress instead which I am glad about. I really would prefer not to go the c-section route if possible. Also, I had zero protein in my urine this time around. I'll take it!

Test Results

2008-06-17T10:45:00.000-07:00

I got my 24hr urine results back from Maternal Fetal Medicine and the numbers looked pretty good. My overall protein was 360 (the last time, which was in April, it was 500) so that is improvement. I have to admit that initially, I felt a little disappointed just because I was hopeful at having zero protein show up in my urine at my last OB visit. Realistically though, I know I shouldn't complain because it is still progress and that's even with me being off the Cyclosporine since May 1st. Hopefully I can keep them at this level so that I'll be able to nurse when the baby is here (which isn't an option if I have to go back on the Cyclosporine.)

27 Weeks and Counting

2008-06-03T14:56:00.000-07:00

I saw my OB today for a check up and ultrasound (one of the benefits of being considered "high risk" is getting more ultrasounds so they can keep an eye on the baby.) He looked great and so much bigger than at 19 weeks - far less alien this time around. At one point the technician said "he is measuring slightly bigger" and when I asked what that meant, she said he was 2 1/2 lbs and in the 96th percentile. I had to laugh - so much for their concern that the Cyclosporine has the potential to cause growth retardation in fetuses. Parker was such a long string bean, what do you want to bet we get a chubby linebacker this time around? Bottom line though was that he is looking good and healthy and that's exactly what we want to hear.

The OB also told me that no protein showed up in my urine test this time around which shocked me because I've been off Cyclosporine since May 1st. Maternal Fetal Medicine had me do a 24 urine test and bloodwork as well so I'll be especially curious to see how that comes out.

Looking Good (well, at least feeling good)

2008-04-15T16:00:00.001-07:00

Saw the kidney Dr. today and she's letting me lower my Cyclosporine to 25mg on Mon's, Wed's and Fri's and then nothing on the other days until May 1st. Then I can go off it completely. Prednisone will stay the same. We are keeping our fingers crossed that my numbers will remain steady once I'm tapering off. My last round of tests came back pretty good. I did a 24 hr urine and my protein ratio was .40 (last time it was .50) and the protein in my urine was 568 mg (down from 1500 at the June 2007 24 hr urine.) She said a normal person's protein in a 24hr urine can be up to 150mg but sometimes people have up to 300, so according to her, I'm really not too terribly far off the mark.

She said that the 3rd trimester can still get tricky but that I probably would have exhibited some signs by now if things were going to get a little crazy but she seriously doubts I'll make it full term and guesses I'll deliver somewhere around 37 weeks because they won't want my body to go through any undue stress. She also said I may have some bedrest coming between 34 and 37 weeks. I'm not so sure though - at least based on my last pregnancy, my body held up really well and I have to say that the whole labor part was not a stressful time.

We talked about the importance of making sure the nurses know that I cannot have any advil, ibuprofin or anti-inflammatories of any kind during the process. She was telling me a story about how she got one of her patients with Lupus into remission and then a couple years later the woman took some ibuprofin and it made her relapse and it took them 6 months to beat it again. I don't see the need to ever take that stuff again - tylenol will do the trick and she did give me the go ahead for narcotics during labor so I should be fine.

She also mentioned that if we can keep my levels at this point once I'm off everything and get into remission, I shouldn't be surprised if this disease shows up again several times down the line. She said often it is sparked by some immunity thing like the flu or a bad cold and then the symptoms start showing up again and we'll treat it with the drugs again.

I've been curious about something that I was able to get clarification on. I've always read that with this FSGS disease, the glomureli (blood vessels) in the kidneys are damaged/scarred and that's why the protein leaks out of the blood (where it belongs) and into the urine. I've also read that you cannot repair these damaged blood vessels and yet they talk about remission and stopping that protein leak, so I've always been confused as to how that is possible. The doctor explained that in my case, the glomureli are not so much scarred as leaky but they don't know why this happens. So basically, if they can get you in remission, they have been able to get your blood vessels back to a normal state and stop leaking for the most part. She related it to having a burn on your skin, it's raw and damaged for awhile but then it heals - you may be left with a scar but for all intents and purposes, your skin is back to working and protecting you the way it should.

At this stage of the game, I feel so fortunate to even be having a conversation about remission. I read so many other blogs and stories of people who are far worse off with this disease than I am that it is very humbling to see what people are dealing with out there.

Drumroll Please . . . .

2008-03-24T16:43:00.000-07:00

We found out today that we are having another boy! I will officially be living in a testosterone filled house between Dave, the boys and our 2 male cats. I wondered if I'd have a pang either way but I really didn't, I just felt happy and relieved that the baby looked great. Neither one of us were surprised since it seems like the odds are with 2 of the same sex and frankly boys at this point are familiar territory so it'll probably be easier and more fun to have two little crazy boys ripping around. Hopefully with the 4 year age gap, Parker and his brother will have a close relationship but without the competition piece.

I did notice too that ever since we found out the sex and Dave got to see the ultrasound, he appears to be more tuned in to the whole idea of child #2. Not that he was necessarily tuned out and lord knows he's really picked up the slack when I've felt lousy, basically doing everything, but I think it just became more real for him. When I told Parker we found out he was going to have a baby brother, he said "Great. Can I have a snack in the car?" What is super cute though is that periodically now he will say good morning or good night to the baby which warms the cockles of my heart.

I was reflecting today that when we 1st found out about my kidney disease, they told me its likely I'd be on dialysis within 5-10 years. On top of that, we didn't know if having another baby would ever be in the cards for us, especially not knowing how I would react to the medications. What a whirlwind year. I am feeling really blessed at this point.

Good Results!

2008-03-14T08:35:00.000-07:00

Got the results back from my last round of tests and my protein/creatinine ratio was down slightly to .50 (it was .56 the month before). The doctor said if it's down again when I see her in April, she'll take me off Cyclosporine altogether.

Also got my genetic testing results back from the OB and it was negative (which is good). Basically they did an ultrasound at 12 weeks and did blood work, then more blood work again at 16 weeks. They combine the 3 to come up with a statistic about your chances of having a baby with birth defects and mine was 1 in 5000 for downs, spina bifida and another one. A HUGE relief for me since I'm already at increased risk because I'm 35 now and then with all the kidney issues and medications, I was feeling a lot more anxious about the defects this time around. I'm ecstatic to not have to worry about that anymore. Now I can fully concentrate on keeping my kidneys and the rest of my body healthy for the rest of this pregnancy.

Routine Check In with the Nephrologist

2008-02-26T15:27:00.000-08:00

Met with the Kidney Doc today for a basic check in. She said she was really impressed with the Fetal Medicine Doctor at Evergreen who gave her a nice summary report on what we talked about. Had me do a urine and blood sample today but said I could go ahead and reduce my Cyclosporine to 25mg daily now. She's assuming the numbers will look good but if they don't, then she'll bump it back up. She said if things look good, she'll probably wait 3 more weeks and then try to reduce it again or take me off it completely at that point. Ultimately she wants me to be off the Cyclosporine within 2 months of delivering but we've got lots of time for that and as far as I'm concerned, the sooner the better. She also said she predicts this baby will be a girl.

She reiturated that I cannot take any advil or ibuprofen post birth either (apparently sometimes that can precipitate the disease to come back). So, it's all Tylenol and narcotics if necessary.

The Doctor also told me that she will keep me on Prednisone through the duration of the pregnancy and probably for awhile afterward (although probably at a 2.5mg dose). Number one, if they end up having to take the baby early because of any complications, the prednisone can help it's lungs develop giving it a little boost. And number two, apparently 3-4 weeks post labor can also be a scary time because the disease can come back strong and the prednisone might help combat that (it's still ok to nurse on it.) I asked why that is and she said they think it's because your body has established this hormonal balance during the pregnancy and then once you go through labor the hormones are all in flux and that dramatic change can cause it to go nuts. She said sometimes the kidneys will just stop working at that point in harsh situations but she didn't feel like I was a big risk for that part.

At this stage of the game, I'm just happy to be over the hump of the 1st trimester and feeling better and not sickly anymore. Not to mention getting a little energy back. That was too brutal. I also haven't noticed much in the way of foamy urine for awhile now so I'm very hopeful that my numbers from this visit will continue to be good. We shall see.

A Reprieve

2008-02-07T10:51:00.000-08:00

I haven't written in awhile and there is a good reason for that. I've just plain felt awful. My list of complaints feels neverending: I'm sick all day and night with a nausea that won't give me a break and has been going on for 7 (!) weeks, peppered with occasional vomiting. I don't know what's worse, the actual getting sick part or just feeling like I want to be ill day and night. Also, headaches and pressure behind my eyes, constipation, heart burn, indigestion, and a ridiculous lack of energy where I could easily sleep the day away. I'm sure I am a joy to be around, (poor Dave), not to mention I feel like the worst parent in the world because I have had zero energy for Parker so he's been entertaining himself without much participation from me for weeks. Ick - have I mentioned I hate being pregnant? It is merely a means to an end for me and the only thing getting me through is knowing that we are done after this and I will never put my body through this again.

So here I am in week 12 now and am starting (knock on wood) to feel like my sickness is subsiding. I'm still a little nauseated in the mornings but it seems to fade fairly fast and then I'm ok. I couldn't be more thankful. Bring on the 2nd trimester where your energy comes back and you feel somewhat healthy again. I bought Candyland last night and Parker and I played and he was loving it. I think he was just thrilled to have me back to play with again and hang out with him like normal.

Had my ultrasound and bloodwork on Tuesday to check for birth defects but unfortunately they didn't give me any answers and won't until I get more bloodwork in 4 weeks. I'm definitely a little more anxious about that part of things this time around so that's a long time to wait. I keep thinking if they saw any markers they may probably would have said something because I might want to do further testing but who really knows. I guess it'll be what it'll be and although I know I wouldn't really make any drastic decisions based on the info, I would like to be prepared for what's in front of us at least so there are no surprises at the birth.

Maternal Fetal Medicine

2008-01-31T10:37:00.000-08:00

I had a check in appt with a dr. from the Maternal Fetal Medicine group at Evergreen. My O.B. thought it would be a good idea to have them consult with us throughout this pregnancy because of the kidney complications and then the MFM, the OB and the Nephrologist will all work together to keep an eye on my numbers.

The Dr was great - she told me my creatinine level was low enough (.57) to not cause big alarm (usually once you hit the 1.30 area or more is when it gets scarier for complications.) Amazing considering when I was first diagnosed, I was at 3.67! It really makes me feel blessed to be where I'm at now - no wonder the original nephrologist wouldn't even discuss pregnancy with me initially.

We talked about the risks of taking prednisone and cyclosporine to the fetus. She said the prednisone is not a risk really at all and is often used throughout pregnancies for a variety of ailments. Apparently it can once in a while have the potential to cause cleft palate although she said she's been doing this for 25 years and has never seen a case yet. She said the stats on Cyclosporine are fairly inconclusive but it appears that in most studies, the risk isn't so much with birth defects (which has been my main concern all along) but more with the potential of lower birth weight. She said people get alarmed when they hear doctors refer to it as retarded growth but that it is not indicative of mental growth, just the size of the baby. Big relief if that's the worst we have to worry about. She said they'll keep an eye on the baby's growth development along with everything else at each check point. She did say I'm at a higher risk for high blood pressure and preclampsia because of the FSGS so she recommended I get a blood pressure monitor to track it once a day. Typically blood pressure naturally comes down in the 2nd trimester and then goes back up in the 3rd which is another reason the doctors get nervous at the end.

She explained the integrated screen process to me which is how they check for birth defects now. Basically, I get an ultrasound and bloodwork done at 14 weeks. Then more bloodwork at 16 weeks, then they combine the 3 tests to give a better ratio of odds. She said it's a lot more accurate than the quad screen they used to do and gives a lot less false positives. She also said it would be a good idea to have my 20 week ultrasound done with them because they have some sort of doppler that is helpful is looking at the placenta and can be a good predictor for how it will do in the 3rd trimester.

Two Scary Words: High Risk

2008-01-15T09:51:00.000-08:00

Had my first check in with the kidney Dr. since I found out I'm pregnant. We talked about the risks of taking Cyclosporine during pregnancy. She said her transplant patients have to take it during their pregnancies but in a case like mine, even though it's not supposed to be harmful to a fetus, there just isn't enough research to be sure. She's letting me lower my dose to 50 mg / daily of the Cyclosporine and stay on 5mg / daily Prednisone. It will be interesting to see what happens at the next check in. (Come on kidneys, work with me here!) The basic facts she told me were:
-10% chance of disease going crazy because of the pregnancy
-20% chance of it going away (not common but it has happenned)
-More likely 50-60% chance of the disease remaining status quo and not changing much.

She said the 3rd trimester always makes them nervous because of all the pressure on your body and pregnancy is hard on the kidneys anyway. Sometimes everything can be fine and then the labor itself can make the disease go crazy and sometimes there is a chance of the mother hemmoraging. Basically she will work with my OB and will fax them all my test results as we go so they can watch me closely together. I actually felt pretty good about everything when I left there. Yes there are clearly risks but frankly, people who are much worse off than me with this disease and transplant patients have given birth to healthy babies so I feel pretty good about where I'm at. not to mention the fact that I really haven't noticed much in the way of foamy urine since I've been pregnant so hopefully that's a good indicator for how this will be throughout.

The Never Ending Hangover

2008-01-08T10:45:00.000-08:00

Did I say this pregnancy felt unfamiliar? All of a sudden it is all coming back to me. Starting with week 5, the morning (er rather, all day) sickness began and hasn't let up yet. I remember in my 1st pregnancy describing it as a constant, never ending hangover feeling where it's not quite strong enough to get sick but enough to just feel nauseated all day long. Oh yeah, and it comes with a side of headache and fatigue. The other night it was just awful when I went to bed so I prayed for a reprieve, just some kind of break to get me through because the thought of dealing with this again for 8 more weeks is enough to make me want to cry. Well, wouldn't you know, the next day I felt the best I had felt in 3 weeks and actually had some energy back. I guess its a good reminder that some times you just have to ask.

Second Time Around

2007-12-30T10:43:00.000-08:00

I've been down this road before, I have a 3 1/2 year old son so it's not like this is all new and yet everything about this pregnancy so far (in its few short weeks) seems so unfamiliar. Maybe that's because the way it began was 180 degrees different than last time. With Parker, we tried for 9 months before anything happened. This time, it was a complete (although happy) unplanned shock. I figured we wouldn't even get the go ahead to start trying until March. And even then I figured we'd likely wait a couple months so we'd be clear of the potential holiday birthdays (soooo not for me, the poor kid gets so jipped!) Who'd have thought we'd have a new addition to our family this August? I'm still in awe over the whole thing. I must admit I am happy about the timing though - I always thought a summer birthday would be fun doing outdoor parties, swimming etc. (Talk to me again when I'm 8 months pregnant in the dead of summer with swollen parts . . . )

Finally Some Answers

2007-12-27T15:34:00.000-08:00

I finally got a call back from the kidney doctor today about my concerns. She said that it is fine for me to continue the Cyclosporine and Prednisone, that her transplant patients take them when they get pregnant all the time because they have to in order to keep their kidney from failing. She told me to meet with her in January like we planned to review everything and also to make an appointment with my OB. I have to say I was much more relieved after that and feel a lot more at ease with what's going on. I called Dave and gave him the update. He said that there is a part of him that's excited about the prospect of having this new addition to our family and that he's a little more anxious just because of the medication piece but now he feels a little more at ease. It was really nice to hear that he's excited this soon after the surprising news. Ok, so now we just go forward with our lives and see what happens in the next couple months and what the Dr's say in January. I'm really anxious to tell my friend Jen the news but I'm debating waiting until January when we have some more info. We'll see how long I can last on that front.

Still Processing

2007-12-13T14:21:00.000-08:00

I was able to get an appointment with the kidney dr. on Dec. 19th so at least that is much sooner although it still makes me very nervous about continuing to take the medications until then. I called my OB/GYN's office but they don't want to see me to confirm the pregnancy until I'm between 8-10 weeks so not until Jan. 21st. I've been trying to research anything I can find online about Cyclosporine and Prednisone and pregnancy but most of the tests appear to be inconclusive.

On another note, when I told Dave the news last night he was shocked just like me. He took it pretty calmly but I know it will take a while for him (and me) to process it. He said he just wasn't thinking about the possibility at all and wasn't worried even when I told him I was late. He said, "its not like we didn't know this would happen at some point down the line, I just wasn't in the mind frame at all right now because we had talked with the dr. about figuring it out in February sometime." I asked him if he was bummed out and that he could tell me because it wouldn't freak me out but he said no, just shocked and that he was just really worried about birth defects and the medications and that there is enough to worry about just in this age bracket without adding meds to the mix. As usual though, I always feel better once Dave and I know about an issue and can think/work/brainstorm it together as a team so now I'm feeling more at ease and figure there is not a whole lot I can do until next Wed.

Speechless

2007-12-12T15:41:00.000-08:00

I spent all day at work today in sheer anticipation, just waiting to start my period. I hate this not knowing and sitting in limbo - I know I'm going to get it so enough with the suspense and just come already! I couldn't take it anymore so I slipped out in the afternoon to buy a pregnancy test and sat in the bathroom with it (never really thought I'd be at work the 2nd time around figuring this out.) I just wanted to see the negative and be done with this mind game but 2 minutes later, low and behold . . . it was POSITIVE! I was shaky, jittery and just plain in shock and awe. Considering it took us 9 months of trying with Parker and then nothing happened when we were trying for 7 months before I found out I had FSGS, I can't believe it. I called Dr. Perkinson's office to try and get in to see her soon but the earliest appointment she's got is January 14th. Yikes, I can't wait that long wondering if I should stop taking the meds. I left a message for her nurse to call me so we'll see what she says. Now I'm just wondering how Dave will react. Lord, now I'm nervous about both of their reactions . . . .

Hmmmm

2007-12-11T16:16:00.000-08:00

So I'm a little concerned, (is that the right word? Maybe I should say "interested"), I was supposed to get my period on Saturday but so far, nothing. Now let me just say that this is fairly par for the course considering ever since I've been off the pill (over a year) I'm fairly sporadic: some months 22 days, others 28, even as many as 35 but this last year I've been running pretty close to 25 which is why it caught my attention.

At first I was feeling a little panicked thinking about what the ramifications of an (unplanned) pregnancy would be: what would it do to my protein levels? The Dr. & I specifically talked about waiting until March or so depending on how my numbers looked so I know she'd probably scold me harshly. But most importantly, would my being on 100mg Cyclosporine cause any birth defects?? But now that a couple days have passed I find myself feeling a little hopeful that I am actually pregnant (just saying it out loud seems so weird and fairly selfish) and consoling myself with previous comments the Dr. has made like transplant patients get pregnant all the time on the drugs because they don't have the option. I'm sure I'm not, we've been in this boat before Parker and sure enough, as soon as I took a pregnancy test, I got my period a couple days later. And yet I find myself contemplating it more and more throughout the day.

Good Numbers

2007-11-28T15:42:00.000-08:00

Had another round of labs at the Doctor and sure enough my protein level is at .066 now. I feel so good about that considering I was around 3.67 when all this craziness started. The Dr. is keeping me at 5mg Prednisone 5 days a week but letting me do 2.5 on 2 days. (Maybe I can start losing some weight! I've been hovering around 20lbs more than my usual lately and that's such a bummer.)

She is also keeping me at 100mg Cyclosporine so I'm curious to find out at my next appointment what the holdup is in lowering that one. I wonder if she is waiting until I stop spilling protein altogether? I'm anxious to get off that - I don't like the future cancer scare it brings, plus the whole future pregnancy piece not to mention the fact that I'm just plain curious to see if my body will maintain these levels on lower doses. Needless to say I'll take good news anywhere I can get it.

The only downside is that apparently my Vitamin D levels were low (20) and they like them to be anywhere between 32-100 but preferable around 45. She wants me to make sure I'm taking 800 units daily. I've been taking Calcium Citrate which is a calcium pill including Vitamin D so I'll just have to take a couple more daily and see if that helps. Lord knows I don't want any bone issues plus I read that Vitamin D may have some correlation to cancer prevention.

I wonder what the difference is in these lowering of numbers. I've had months where I'm very strict about my food and others where I've eaten whatever I want and the numbers don't seem to be too affected either way. Maybe it's just better living through chemistry or maybe it has something to do with the acupuncture I've been doing (sporadically). There is a part of me too that wonders if it has something to do with me challenging myself more going back to school and trying to find my life's purpose.

Yahoooo!

2007-10-29T11:13:00.000-07:00

I'm elated! I got my results back from the last urine and blood tests and they were great. When all this kidney business started back in March my protein spillage was 3.77 and this month it is at .70. I'm so happy and the Dr. is letting me reduce my prednisone dosage to .5 (wow, down from 40 originally makes all the difference). Dare I think I may be lucky enough to have this disease slip away for awhile like Dr. Perkinson says can happen for some folks? My concern at this point is that I want the numbers to stay positive when I'm finally able to start reducing my Cyclosporine dosage. I guess we'll see about that when the time comes and for now I'll just relish the moment.

Another Check-in

2007-10-22T15:08:00.000-07:00

Check in with the Kidney Dr today. Did a regular urine sample and some bloodwork (nice to not have to do the 24 hr catch this time around - it's a blast bringing it back downtown to work with me on the bus :) . I'm always anxious to hear the results to see if I've made good progress. This time we talked about getting a flu shot but she said it's debatable because it has sometimes caused more protein spillage but she ended up recommending it to me anyway so I got one there. Also talked about the importance of staying healthy especially during the cold season while I'm on two drugs that suppress the immune system.

She mentioned the following: Always wash hands; Dave and Parker need to wash their hands when they come home; I shouldn't be touching the cat box; I shouldn't be changing diapers (I told her this was probably not realistic since Park is not potty trained yet); She told me to avoid anyone with Shingles and anyone who has received vaccinations or flu shots orally as opposed to via a shot. Also mentioned marijuana is out because it has a fungus on it that is hard on your body when smoked but "you can have it in a brownie because it's safe to ingest." I laughed and told her that one was really not an issue at this point in my life.

I told her I was concerned about the long term cancer causing effects of Cyclosporine and she agreed that it was bad but basically said - what are your options? She said, we know that spilling protein will cause damage to your body so we can't just let that go. We know that Cyclosporine is helping but it can be bad long term but at least that's a chance. Also it is less harmful when it has been taken for a shorter period of time overall - she said she's more concerned with the people who have been on those harsh drugs for 2-3+ years.

She also told me a case study about one of her patients who she had been treating for 15 years with Cyclosporine - every time she took her off the drug, she would relapse. Finally she put her on Cytoxin (very harmful to reproductive system and babies can get serious birth defects if pregnant while on it). She said in 3 months the disease completely went away and has never returned. She is off the drugs, waited a couple of months, got pregnant and had a healthy baby and is currently pregnant with her 2nd. Perkinson told me there are lots of drug options, all have pretty bad side effects, but it's a matter of finding the right cocktail for each person.

She also mentioned that my creatinine level is .7 which is that of a baby (very good) and that she gets concerned when it gets in the 1.2 - 1.4 range. Level 6 is where transplant people are. Good news on that front. I mentioned that it seems like my urine is foamier during the week of ovulation and she said that's not surprising - many diseases like this are hormone related and that they've seen some women go through menopause and then all traces of the disease disappear.

Check-In with the Doc

2007-08-21T20:40:00.000-07:00

I met with Dr. Perkinson and she requested a 24 hr urine to check numbers against last 24 hr catch. Urine was at 2000 last time. (I asked where it should have been and she says she would have been ok with 150) Says she’d be happy with 1000 and if that’s the case she’d like to lower my Prednisone dosage. Actually if its under 2000 she might lower it anyway just because that shows progress. I will also do blood work at the lab at same time to check protein and cholesterol since that hasn’t been tested since Dec. 2006. Blood pressure today was 125 over 76. Told her I’m doing acupuncture (she’s all for it) and says she supports anything like that which helps but doesn't have you taking more drugs. Also told her about the ovulation pain I experienced around the same time as nephritic syndrome symptoms showed up – she said kidneys can swell and that may have caused pain but I told her the pain was lower abdomen like ovary area not in the back. Also, I had never had the pain before and it only lasted for about 3 months.

She was very happy about my weight loss (about 15lbs) and said that can only help. Much of it is water and swelling I’m sure but she checked my legs and said there was no swelling today which is good. Told her I was feeling tired – asked if it is same as last year and I said yes. Told her I cut out dairy, coffee, flour, sugar etc – not so much for kidneys but more because I feel better without them and figure that can only help everything else.

She told me when I turn in the 24 urine catch – go to the lab right at 7:30 a.m. Get bloodwork done too and fast for 11 hrs and don’t take Cyclosporine before the test. Take Cyclosporine the night before before 7:30 or so so there is 11 hrs before test. She said her goal is to get me off prednisone completely by the end of year, taper off to no Cyclosporine within 1 year (March) and get me pregnant by summer. Obviously that will depend on how all the #’s go but I love that she’s got those goals in mind. Definitely left that appointment feeling very hopeful and positive so now I'm keeping my fingers crossed for good protein numbers out of this latest urine.

July Test

2007-07-19T20:48:00.000-07:00

Gave a urine sample for this month and got a call from the Dr. a couple days later saying it appeared as though my protein may be up slightly although its a little hard to tell since my previous Dr. never had me do a 24hr urine sample so the one last month was the 1st baseline we have to check against. I've been keeping a spreadsheet of all my stats each month and I'm actually showing it having gone down slightly so I'm not too worried. She told me to meet with her again in August.

(Parker & I watching fireworks)

New Doctor, New Outlook

2007-06-08T15:39:00.000-07:00

I changed kidney doctors today. My old guy and I simply did not seem to click and I feel like he was tough to get answers from. This new woman is one of the top nephrology doctors in the Seattle area, plus being a woman I felt like she would be a better fit for me especially since I have hopes of having another baby at some point. She was great: straight forward, sympathetic and much more accessible with answers.

We went through a host of questions trying to figure out some kind of trigger for this disease: Have I ever had mono? strep? hepatitis? a bad rash? subjected to aids? anything different? All no's but still begs the question: what happenned between my clear physical in March 06 and the 1st set of symptoms in Sept 06?

She told me that I was in remission (new information to me and furthers the point that I needed to change doctors - why wouldn't he tell me that??) and she was basing that on the fact that my protein # was 57 and a normal person can have anything from 0-150 so 57 wasn't something she was concerned with. She also said that because I don't have all the typical markers for this disease (ie: black, diabetes, not genetic, high blood pressure etc) that she felt good about my case. I asked if that meant I might be able to delay dialysis/transplant for several years and she said that I may not ever go down that path. I had never heard that outlook before and I can't tell you how much more hopeful I felt after hearing it. My previous Dr. basically led me to believe that once you have FSGS, it progresses at either a slow or fast rate but always ends the same: with renal failure at some point. She explained that this disease can float in and out of your life for some people. It can't be cured but may go away for all intents and purposes and then come back in a few years and you treat it again. Also said it can precipitated by sickness. I asked her how common this disease was for people like me and she said very common, you'd be surprised.

I asked her about getting pregnant and she said she would like me to be on the drugs for a full year and watch my protein levels before she gave me the ok. A couple reasons for this: research has shown that the more starts and stops people do with the medications or stop early into it, the harder it is to stay in remission and those people don't have the same success rates. She also said that pregnancy is hard on any body but particularly on your kidneys so she'd like to see how things play out for several months and how my numbers look over time so that we can make sure I won't be too high of a risk. She said she has seen people go from where I'm at now to full renal failure within a 9 month pregnancy - very scary. Also, the more times you relapse, the worse your odds for remission. Assuming my levels stay where they are now or at least remain consistent, she would then taper me off the prednisone. She'd like to get me down to 10mg, then 5 then 5 every other day and eventually no prednisone at all because it is such a bad drug in the long term. I was really happy to hear that because I've never been thrilled about being on it and my previous Dr made it sound like he was going to keep me on both for years. She said that Prednisone does not put you at a higher risk for miscarriage and that actually fetus do well with it because it helps their lungs develop especially in risks of premature birth. They actually sometimes give it to women who are higher risk for miscarriage. She said the Cyclosporine dosage is really not considered that high at 100mg / daily (she has some patients on 200mg 2 x daily.) According to her, its not a super bad drug but does put you at a higher risk for cancer and that many of her post transplant patients have gotten pregnant on it because they don't have the option of being off it. She said in Feb or March of next year we could revisit the pregnancy option and then if she gives me the go ahead, she would watch me closely and then possibly do a small dosage of ACE inhibitor after the pregnancy was over depending on protein levels. She thought it was interesting that Dr. King didn't start me on an ACE inhibitor initially but at this point, what he did prescribe is working so we'll stick with it.

Next Steps

She asked me to do a 24hr urine catch so we can have a baseline for how much protein I have in my urine over that period. As soon as I'm done with that, she ok'd me to lower my Prednisone dose to 10mg. We also did lab work today to get blood work and to do another Lupus and Hepatitis test and to check my thyroid. She said from my chart she sees that over the last couple of years my thyroid function seems to have gone down but I'm still on the same dosage so she wants to double check what I need to be on. She said that thyroid issues can cause protein spillage as well.

She recommended that I stay active and that I should never take advil or ibuprofin but that Tylenol is ok. She also said she's all for using naturopathic medicine as well as standard western medicine as long as they don't prescribe drugs/herbs, even natural ones, because they all still get processed through the kidneys.

Reality Check

2007-05-20T08:17:00.001-07:00

I had an epiphany recently. My numbers were really positive last month and because the Dr. let me reduce my prednisone dosage I got cocky. I haven't been running like I was and I have been pretty much eating whatever I wanted. What was I thinking? When all this first came on, I was hell bent on doing everything within my power as far as diet and exercise to increase my odds of staying healthy so how did I get to a point where I was eating treats every night after dinner?? Especially when I know the long term side effects of cyclosporine can lead to high blood pressure, diabetes and a host of other

(Serious moon-face going on here)

problems. Not to mention that the very nature of FSGS is damaged blood vessels in the kidneys, well, I'm quite sure eating like garbage isn't exactly going to help.

Needless to say, I'm really disappointed in myself and it makes me nervous. I'm supposed to do a urine and blood work check for this month now and I'm scared that all of this behavior is going to prove just how detrimental it can be toward my condition.

In the physical side of things, here's what I've been noticing: my skin has cleared up dramatically as a result of cutting back the prednisone. The moon face has gotten quite a bit better but is still really evident to me which has bummed me out. My feelings of endurance and powerfulness have dropped off so when I do run, I struggle when I wasn't before. And I'd be ok with that as long as the full face thing would go away with it but no luck yet. My upper body is feeling and looking heavier - starting to look a little more apple shaped where I've always been a pear before which is hard because even though I've always struggled with my weight, it was never really my waist line that was a problem so it's frustrating to have a "muffin top" in my jeans now. I know that if I get back to eating and exercising the way I was and the way I should, it would help. I keep thinking, its hard for the body to redistribute fat if you're eating healthy, building muscle and burning calories.

Great News

2007-04-17T14:16:00.000-07:00

I gave my first urine sample on Friday after one month of being on the drugs. I spoke to the kidney Dr. today and he said my protein spillage went from 3.16 last month to 1.84. He said this is a good sign that I am responding to the drugs and have nearly halved it. I am ecstatic! Especially since he initially told me it could take 2-5 months to see a response. Also, I was fairly discouraged on Friday because I was really starting to feel the acne and puffy face side effects of the prednisone and was retaining a little water so I was feeling like I shouldn't get my hopes up so soon.

I talked to him about the side effects and he agreed to let me reduce my prednisone dosage from 40mg daily to 30mg for the next week, then down to 20mg indefinitely after that. The Cyclosporine will stay at 100mg forever. He said it won't get rid of the side effects quickly but should help reduce them. I'll take whatever help I can get at this point and besides I'm just thrilled to be able to cut the steroid dose in half - that's got to help all kinds of things in the long run. I'm walking on air!

Side Effects

2007-04-13T13:18:00.000-07:00

I've been taking the drugs for a few weeks and only felt a few side effects initially. The first couple of weeks, I actually felt nothing bad and the prednisone was making me feel a little more endurance and strength (I'm starting to see why athletes like being on the juice :) I also noticed that my skin was noticeable softer (I don't remember reading anything about that but that I'll take it.)

Another week into it, I am feeling a few negatives. I had a few weird hand cramping episodes where my hand got stuck in a claw for a few seconds. I've also had a few leg and foot cramps in the middle of the night where my foot was turning odd angles on its own and cramping like crazy. Creepy but short lived at least. My hair has become slightly frizzier and I have noticed more facial hair on my chin and neck. The worst part so far though is all of a sudden this past week, my face has completely broken out and there is nothing I can do topically to help it. The other thing that has been less than attractive is that my face is getting fuller which is especially odd because I have actually lost weight in the rest of my body and my clothes are fitting better. Maybe this is the "moon face" I read about early on. I'm still grateful that I don't feel sickly though - anything is better than that.

I turned in my first urine sample on Friday and am waiting to hear back from the doctor about the protein levels. I'm hoping it has gone down but realistically I know its probably too soon for progress. We shall see.

And the Hits Keep on Coming

2007-03-15T10:35:00.000-07:00

Now that I've digested this information for a few days, I was able to talk to the doctor again and get some more questions answered. My main concern at this point is how this will affect our plans on having another baby. He told me that this is an active disease and its never a good idea to try for a pregnancy with an active disease. Since we don't know how quickly the disease will progress, a 9 month pregnancy could be a scary time with no options of taking the autoimmune drugs (they can cause birth defects) if my kidneys starting shutting down. Also, the prednisone is ok to take after you become pregnant but they discourage it at conception because there can be higher rates of miscarriage. Even though I know it all makes sense, this was another devastating blow.

It is just so hard to have that control over our family building taken away for the time being especially when we are at a point where we were so ready for the next phase. Parker is 3 years old and I'm less concerned about my own age (although looking at defect statistics never helps), and more concerned about the age gap between him and a possible sibling. In my perfect world, I don't want them to be too far apart. I've always said I was ok with 3-4 years and here we are without that option right now.

I was dreading the response I thought Dave might give, saying that my health is the most important thing but that maybe us having another baby wasn't in the cards for us or something to that effect. Of course I expect him to put my health first and this would be a completely rational and logical thing to feel, but I guess I really wanted him to be equally as devastated by this news as I was because I wanted to know he wanted another child as much as I do to feel like our family is complete. Dave was in typical form though and said exactly what I needed. After some thought, he said I should just stay off the pill and that if, in a few months of progress on the drugs, we get the go ahead to get pregnant, then we won't have the timing issue of getting my body off the pill again and we'll be ready to go.

The doctor said that he would consider a "remission" as 1-2 months of no protein spilling into my urine. He also said that the drugs can often take 2-5 months to give us an indication if they are working and that sometimes Cyclosporine in 100 mg dosages can cause remission.

Concerns and Blessings
I'm worried about the side effects of the drugs. Everything from nausea, acne, weight gain, hair growth in the face, high blood pressure, diabetes, renal failure, moon face (?!), buffalo hump (!) and the list goes on and on. I just don't want to feel sick all the time and I'm afraid of how that could affect my ability to be an active, healthy parent, wife, person. At this point, I'll just have to start the cocktail, hope for the best and see what happens.

I have so much to be thankful for. I have always been a pretty optimistic person and I really think that's going to help me keep this all in perspective. Right now I feel good and my kidneys are only damaged at a microscopic level so hopefully catching this early could help me delay the long term affects and prevent further damage.
I can't tell you how thankful I am that this is happening to me and not Parker - as a parent that would be so much harder to bear. I'm also extraordinarily thankful that this is not something I have passed onto him genetically.
I have an incredible husband, family and friend support network to rely/lean on at any given time.
I don't have diabetes, high blood pressure or other diseases which tend to bring on kidney damage much quicker.
Its not a death sentence - in the scheme of bad things this could have been, I'm better off than a lot of people out there and I'm so grateful they didn't come back and tell me I have some incurable cancer etc. Yes, dialysis and a transplant would be awful but at least they are options and there are lots of people out there who continue to lead normal lives before, during and after.

I talked to my sister Stacy and she was a little choked up, saying she was trying not to focus on why is this happening to our family. She was great though and was immediately taking care of what business she can control. She said she's going to find out what to do to see if she's a donor match so that we'll know now and that way, even if we don't need to go down that road for a long time, it's comforting to know there are options. She also sent me a bunch of naturopathic research and gave me a list of the top nephrologists in Seattle for a 2nd opinion. See this is what I'm saying, I am blessed with support and love from so many people - its absolutely overwhelming.

The Beginning

2007-03-12T11:52:00.000-07:00

My name is Heidi. On March 12, 2007, I found out I have a kidney disease called Focal Segmental Glomerulosclerosis (FSGS). I'll remember this day for the rest of my life because it instantly put me in the category of being someone with a "disease". I'm 34 years old and have always been pretty healthy with clean bills of health at every physical, so needless to say, the news was shocking.

Here's How it All Began
My husband, Dave, and I went to Vegas in September of last year to celebrate our 6th anniversary. We had a great, adult only time (leaving our 2 1/2 year old son, Parker, with my sister for the weekend). The last day there, I started to feel swelling in my legs, ankles and fingers but didn't think much about it because I assumed it was from all the token vacation drinking and eating. When we got back, it got a lot worse, to the point of being very heavy and uncomfortable and visibly retaining water so I went to my doctor who, after asking what things might be different for me recently, determined it was edema induced from the flight and high altitudes. It did seem a little odd since I've flown a million times before but what else could it be? She prescribed water pills and after a week or so of taking them, I was back to normal.

Then in October, I went to Philadelphia with my sister and parents and came back with similar results. Since this again involved a flight, I took some leftover water pills again which took care of it for the most part. I did have some residual ankle swelling from time to time but I've retained water in the past so I just figured it was kind of typical for me depending on how I've been eating.

Fast forward to November. Dave and I decided to finally check into taking life insurance policies out on each other which we've been meaning to do since Parker was born. We order up the policies and the travelling medic comes to our house to do in home basic physicals on both of us. A couple weeks later, I get a letter in the mail from the insurance company saying that they cannot cover me at this point because some protein showed up in my urine sample and I should follow up with my doctor. This seemed very atypical for me but in all honesty, I still wasn't too worried because I didn't have a whole lot of faith in an insurance company test and figured I would follow up and it would be some flukey thing or I hadn't fasted enough or whatever. I went to the doctor in early December who did a urine test and confirmed there was protein in my urine (which should not happen at all) and then took some blood. The bloodwork showed that the protein level in my blood was low so it indicated that protein was leaking from the blood into the urine which sounded like a kidney filtering issue. The doctor referred me to a nephrologist.

After rescheduling a couple of times, I saw the nephrologist in late February. He checked urine and blood with similar results as before and sent bloodwork off to the lab to rule out some of the big stuff like Lupus. He also confirmed that the swelling I was experiencing was a textbook case of Nephrotic Syndrome which is what happens when the filters in your kidneys are not functioning properly. I was relieved when he called a couple days later to tell me the bloodwork came back clean for the scary stuff and to be perfectly honest I figured I was out of the woods. He had forwarned me that if the protein level in my urine was a 3 or higher, (it was a 3.2), he would request a kidney biopsy but even he felt like it would give us a definitive answer to what was going on but that often times things like this come up and we just watch it for awhile and see where it goes. Meanwhile, more water pills would help the swelling.

The kidney biopsy was on March 8th and was actually not bad. Very painless and I felt much better afterward than I expected. I've never really been in this boat before (last time I was in the hospital was for Parker's birth) so it was surreal being in the hospital for 6 hours by myself waiting for it to start and sitting in a gown on a bed, hooked up to an IV. (I had my parents drop me off since it would be awhile and I'd be out of it recovering for the last half anyway and didn't want Dave to take off from work). I had a lot of time to think but I was feeling very calm and at ease about everything.

The Big Blow
The nephrologist called me at work on Monday the 12th with the news. I remember trying to stay calm but I was trembling just trying to soak up the information, unbelieving this is happenning. He gave me the basics: its a disease where some of the blood vessels in the kidney are scarred which is why the protein is not processing correctly. Often it is a result of diabetes or high blood pressure but since I have neither, they don't know what causes it. It is not genetic in this case since there is no familial history of kidney disease. It is chronic which means there is no cure and it is something that will be managed for the rest of my life. It is early stage so the goal is to try and stave off kidney failure as long as possible (meaning it will inevitable happen at some point?!?) He told me at this point the treatment is with Prednisone (a steroid) and Cyclosporine (an immune suppressive drug) which in some cases can cause a type of remission. The scarring can never be repaired but can hopefully be slow to progress or stopped. The drugs can have some serious side effects long term (diabetes, high blood pressure, failure to fight disease, more prone to skin cancer, and of all ironies, renal failure). I tried to think of all the questions I could off the top of my head and keep it together but he knew it was a lot to absorb and told me to mull everything over, get on the web and research and then call him back with questions.

Thankfully it was lunchtime and everyone in my office was gone so I could have some privacy. I called Dave at work which seemed like a terrible thing to do but there was no way I could wait several more hours to tell him. I started crying the minute he answered and told him I got the results and they weren't good. I could hear the attempt to control the alarm in his voice. He stayed calm outwardly (always the rock) and took it in and said he would try and get off early to meet me at home so we could research it together and get some more answers. I told him I couldn't stick around and finish out the day with all this on my mind. I called my sister, Laurie, and told her too. She was great and asked if I wanted her to come pick me up and take me home and hang out but I told her I really just wanted to pick up Parker and head home.

My mind was racing the entire way home: How is this happening to me at 34? How will this affect the future of our lives and my abilities to be a healthy, active mother to my son? What about our plan to have another baby? (we've been trying since September) How will I tell my healthy 68 year old parents that their 34 year old daughter has a life changing disease? What is going to be the end result of all this down the line? Will I be sickly and on dialysis 3 times a week or getting on a waiting list for a kidney transplant? Will that happen in 2 years or 20? Will I ultimately die or be ill from complications associated with this disease?

Dave came home at 3:00 and we surfed the net which was filled with a lot of doom and gloom and worst case scenarios. I was emotionally exhausted afterward just crying and taking in the information. It was therapeutic though to get to that tired stage where I didn't even want to talk about it anymore. Dave of course, said all the right things which is why he is so great in these situations. He told me when I called him, he thought I was going to say I had cancer so by comparison, this feels like a gift. He said he's always been able to trust his instincts and vibes that he gets off these stressful situations and he can always tell when something is very bad and he does not get that feeling about this situation. He said he knows in his gut that we will get through this and it won't be a terrible end result. Later that night, he said "We will get through this - I know in my heart we were meant to be together and do great things and even though I don't know exactly what that will entail, I have to believe it because my whole world is in this house." I couldn't have asked for a more perfect response from him and will add it to my long list of things to be grateful for on this journey.