Last Monday, I took a positive pregnancy test. Today, at the OB/Gyn, they stuck a probity probe up in Lady Town and confirmed it.
There's a baby in there.
I think I need to change the name of my blog. Being on dialysis is interesting, but being pregnant on dialysis makes for far better reading material.
So how does dialysis affect pregnancy, you ask. Well, first off, a disclaimer. If you are on dialysis and thinking about getting pregnant on purpose, don't do it. The statistics vary somewhat, but most medical communities agree that dialysis patients are only 50% likely to have a healthy baby at the end of this.... And to get to that healthy baby, it is necessary to dialysis at least 20 hours a week.
I'm only 6 weeks pregnant, but I have already upped my dialysis regimen. Instead of going MWF for 3.5 hours, I am going MTWFS, for 4 hours, nearly doubling my time spent on the machine. I may end up increasing the time after lab work, if it shows that my pre-treatment BUN is still too high. Despite the fact that this pregnancy was unplanned and unexpected, it is not unwanted. We won't let mistakes in fertility happen again, so this is my one shot at a biological child.
I've adjusted my diet to focus heavily on fruits/veggies/and protein. I used to cheat with Coke, despite the fact that it's a dialysis no-no. I figured if it was just that one cheat, and I took my binders, it was no big deal. I had tried before to give up those delicious cans of phosphorous and sugar, but was never able to go more than 8 days without. I haven't had one since 6 Nov. Turns out all I needed was the proper motivation.
Since vitamins for the general population would dialyze out, my doctor has doubled my dose of Nephplex, which when doubled is roughly equivalent to a prenatal vitamin. I can't wait for all the hair and nail benefits.
All of my dialysis meds, Phoslo, Renvela, Toprol, Calcitriol, Epogen, Ferrlecit, have been approved by the OB, but are considered Class C drugs for pregnancy, meaning that there is not enough data to deem them harmful, but also not enough to give them a full green light. The doctor seemed somewhat concerned, as he has never delivered a baby to a woman on this combination of drugs. This worries me, but as I need them all, what can we do? Hopefully as I dialyze more often, my need for the binders will go down, but we'll see.
I had also been concerned about the use of heparin in my treatments, but the OB assured me that heparin does not cross the placenta, and so poses no issue.
So far, the symptoms have been pretty standard. I've been exhausted (it's hard to grow a person from scratch), a little nauseated without too much vomit, experiencing light cramps as if the area down there were stretching and preparing, and also breast tenderness. According to What to Expect, all of those things are perfectly normal.
Because of my unique situation on dialysis, my outlook is somewhat different from that of a healthy woman. Virtually ALL dialysis patients are hospitalized in the last month of the pregnancy. Of the 50% of women who deliver a child, about 80% of those deliver way early, around 32 weeks. The babies spend 1-2 months in the NICU.
This isn't how I would have chosen to do this. I had planned to adopt a child who already exists and needs love, rather than taking all of these risks. Now that it has happened though, I am going to do everything I can and focus on the best possible outcome.
Thursday, November 17, 2011
Tuesday, October 25, 2011
Psych
Last week I took a long series of tests to evaluate my IQ and mental status. These things tell doctors how well I will cope with the strict regimen imposed on patients after transplant.
The good news is that I am not crazy. My IQ is 87th percentile, and according to the doctor, I am either perfectly healthy or perfectly in denial. And I say, why can't I be a little of both? The questions ranged from faith to coping skills to whether or not I hear voices. I was somewhat worried after all of the faith questions, because I answered negatively. I don't believe in God, and I don't think that He's helping me through this. In fact, I find comfort in knowing that there is no invisible man up there judging me or withholding miracles.
My responses told the doctor that I am fine, if not a little bit preoccupied with my illness. When it's this sort of illness though, aren't we all?
This was one of the last steps on my road to a new kidney. After I see the dentist next week, my case will be presented to the committee, and I will either be approved or denied.
The good news is that I am not crazy. My IQ is 87th percentile, and according to the doctor, I am either perfectly healthy or perfectly in denial. And I say, why can't I be a little of both? The questions ranged from faith to coping skills to whether or not I hear voices. I was somewhat worried after all of the faith questions, because I answered negatively. I don't believe in God, and I don't think that He's helping me through this. In fact, I find comfort in knowing that there is no invisible man up there judging me or withholding miracles.
My responses told the doctor that I am fine, if not a little bit preoccupied with my illness. When it's this sort of illness though, aren't we all?
This was one of the last steps on my road to a new kidney. After I see the dentist next week, my case will be presented to the committee, and I will either be approved or denied.
Tuesday, October 11, 2011
Bad Doctor
It's no wonder that some doctors come with a god complex. The power they can wield is tremendous. I consider myself to be very involved in my care and rather knowledgeable, but even I am more likely to take a doctor's advice than not, even when that doctor is wrong. It's natural to assume that whether or not the doctor is the best in their field, he or she has my best interests at heart.
Alas, doctors are human too, and therefore prone to the same sins as the rest of us. Judgement. Arrogance. Lust. Why those three sins in particular? Well, let's discuss my top three worst doctors.
I met the first three years ago while I was in the hospital with an unknown infection. At the time I had a kidney transplant, so when my fever did not abate, I went to the emergency room to make sure that everything was OK. This being a small town, unused to seeing cases of a kidney transplant with recurring FSGS, they admitted me. The next morning, when the neighborhood nephrologist made his rounds, he came to visit me. We went over my history, and I explained to him that I had had a transplant four years earlier, and that my disease, FSGS had recurred immediately. I had recently moved from a larger city to this small town to live with my boyfriend at the time (now husband) and was under the care of a doctor an hour away.
When I mentioned moving in with my boyfriend, his eyes narrowed and the tenor of the conversation changed completely. He berated me for having moved from the larger town, saying that because I had left the care of my transplant doctor there, I would undoubtedly lose my kidney and never get another.
He then went on to ask my what had caused the FSGS. Was it cocaine? Was it crack? Was it heroine? It continued like that, him listing off every drug he could think of until I was in tears, overwhelmed by the fever and the unexpected need to defend myself.
The thing is that when FSGS is caused by drug use, which it sometimes is, it does not recur in the transplanted kidney. This man made a moral judgement about me and allowed it to affect the way that he treated me.
The second doctor I mentioned is currently in charge of my treatment at my dialysis center. Actually, he's in charge of every one's treatment, as he is the director of the entire dialysis/transplant program. While having one of our rapid-fire chats about my health a couple months back, he mentioned that my clearances (the measurement of how well my blood is getting cleaned while on treatment) were very good. I asked if that meant we could possibly decrease my treatment time by 15 minutes. He deferred, saying we'd see what it looked like next month.
So the next month rolls around, and I ask again. Without really looking at anything, he replies, "Well, your clearances are barely above the state minimum." ... Say what?!
I knew right away that he was lying to me. My clearances have always been exceptional, and further more, I have done treatments for 30 minutes less than my current time and been fine. Better, in fact, because I recovered faster after those treatments and was able to get more out of my day, rather than simply lying comatose afterward.
I called the state and asked what their minimum was. 65. I asked the charge nurse what my clearance had been. 85. I knew right away why he'd lied to me. He made the assumption that I did not know what I was talking about, and said what he did to shut me up, not expecting that I would look in to it and not take him at his word. It's usually a safe assumption, given that he is a doctor and does know more than his patients, but that does not mean that he can simply blow them off. Had he told me that yes, my clearances are good, but that he just did not want to decrease my time, I would have been alright with that. I would not have complained or felt betrayed by my physician.
Most recently, I met the worst doctor of my long experience in health care. I had heard stories about this particular surgeon long before I met him. Firstly from a nurse who worked in the recovery room at this hospital. When I mentioned to her that I needed to see a vascular surgeon, she told me that there were two at this hospital and that one was great, and the other one should be avoided at all costs. Then from a dialysis nurse: If you have the option to go to anyone other than this particular surgeon, do it. From a doctor on staff: Do not let that man touch your dialysis access with a ten foot pole. Don't even let him look at it. Go somewhere else.
Alas, I need to get on the transplant list, and he is a member of the team that must evaluate me. I had never planned to actually get the transplant here, merely to get on the list so that when I move into the vicinity of a better hospital, I will have accrued some points and be closer to getting a kidney. For that reason, I felt no fear when I saw him because this would only have been a minor consultation, not an actual situation where he was trusted with my care.
During the interview, he asked about my history with FSGS
Dr. Handsy McHanderson proceeded to touch my breasts. I was so confused that I didn't say anything, using that moment to think: "Wait a second, does he have a reason to be doing that? No, he doesn't have a reason to be doing that, and even if he did, he's not touching me in a medical way, he's just testing to see if they are bouncy."
He moved on to my abdomen while I lay there staring holes into the ceiling and trying to puzzle out whether or not this was really happening. Then he bypassed my abdomen and went straight to the pelvic region. Not quite down to my girlie parts, but way past where he needed to be.
I wish I had said something then, but it was so confusing and unexpected that I just got out of there as fast as I could and put it away to think about later. The next day I called the hospital and complained and am now on a mission to get him fired. He's clearly not trustworthy as a doctor, and now I find that he's not trustworthy as a man either. Perhaps it's time he retired.
As patients, I think that our quality of care is much better if we feel that the people taking care of us are on our side. We don't need studies or research to tell us this, it's common sense.
Alas, doctors are human too, and therefore prone to the same sins as the rest of us. Judgement. Arrogance. Lust. Why those three sins in particular? Well, let's discuss my top three worst doctors.
I met the first three years ago while I was in the hospital with an unknown infection. At the time I had a kidney transplant, so when my fever did not abate, I went to the emergency room to make sure that everything was OK. This being a small town, unused to seeing cases of a kidney transplant with recurring FSGS, they admitted me. The next morning, when the neighborhood nephrologist made his rounds, he came to visit me. We went over my history, and I explained to him that I had had a transplant four years earlier, and that my disease, FSGS had recurred immediately. I had recently moved from a larger city to this small town to live with my boyfriend at the time (now husband) and was under the care of a doctor an hour away.
When I mentioned moving in with my boyfriend, his eyes narrowed and the tenor of the conversation changed completely. He berated me for having moved from the larger town, saying that because I had left the care of my transplant doctor there, I would undoubtedly lose my kidney and never get another.
He then went on to ask my what had caused the FSGS. Was it cocaine? Was it crack? Was it heroine? It continued like that, him listing off every drug he could think of until I was in tears, overwhelmed by the fever and the unexpected need to defend myself.
The thing is that when FSGS is caused by drug use, which it sometimes is, it does not recur in the transplanted kidney. This man made a moral judgement about me and allowed it to affect the way that he treated me.
The second doctor I mentioned is currently in charge of my treatment at my dialysis center. Actually, he's in charge of every one's treatment, as he is the director of the entire dialysis/transplant program. While having one of our rapid-fire chats about my health a couple months back, he mentioned that my clearances (the measurement of how well my blood is getting cleaned while on treatment) were very good. I asked if that meant we could possibly decrease my treatment time by 15 minutes. He deferred, saying we'd see what it looked like next month.
So the next month rolls around, and I ask again. Without really looking at anything, he replies, "Well, your clearances are barely above the state minimum." ... Say what?!
I knew right away that he was lying to me. My clearances have always been exceptional, and further more, I have done treatments for 30 minutes less than my current time and been fine. Better, in fact, because I recovered faster after those treatments and was able to get more out of my day, rather than simply lying comatose afterward.
I called the state and asked what their minimum was. 65. I asked the charge nurse what my clearance had been. 85. I knew right away why he'd lied to me. He made the assumption that I did not know what I was talking about, and said what he did to shut me up, not expecting that I would look in to it and not take him at his word. It's usually a safe assumption, given that he is a doctor and does know more than his patients, but that does not mean that he can simply blow them off. Had he told me that yes, my clearances are good, but that he just did not want to decrease my time, I would have been alright with that. I would not have complained or felt betrayed by my physician.
Most recently, I met the worst doctor of my long experience in health care. I had heard stories about this particular surgeon long before I met him. Firstly from a nurse who worked in the recovery room at this hospital. When I mentioned to her that I needed to see a vascular surgeon, she told me that there were two at this hospital and that one was great, and the other one should be avoided at all costs. Then from a dialysis nurse: If you have the option to go to anyone other than this particular surgeon, do it. From a doctor on staff: Do not let that man touch your dialysis access with a ten foot pole. Don't even let him look at it. Go somewhere else.
Alas, I need to get on the transplant list, and he is a member of the team that must evaluate me. I had never planned to actually get the transplant here, merely to get on the list so that when I move into the vicinity of a better hospital, I will have accrued some points and be closer to getting a kidney. For that reason, I felt no fear when I saw him because this would only have been a minor consultation, not an actual situation where he was trusted with my care.
During the interview, he asked about my history with FSGS
Dr. Handsy McHanderson proceeded to touch my breasts. I was so confused that I didn't say anything, using that moment to think: "Wait a second, does he have a reason to be doing that? No, he doesn't have a reason to be doing that, and even if he did, he's not touching me in a medical way, he's just testing to see if they are bouncy."
He moved on to my abdomen while I lay there staring holes into the ceiling and trying to puzzle out whether or not this was really happening. Then he bypassed my abdomen and went straight to the pelvic region. Not quite down to my girlie parts, but way past where he needed to be.
I wish I had said something then, but it was so confusing and unexpected that I just got out of there as fast as I could and put it away to think about later. The next day I called the hospital and complained and am now on a mission to get him fired. He's clearly not trustworthy as a doctor, and now I find that he's not trustworthy as a man either. Perhaps it's time he retired.
As patients, I think that our quality of care is much better if we feel that the people taking care of us are on our side. We don't need studies or research to tell us this, it's common sense.
Tuesday, October 4, 2011
Depression
The coordinator for transplant at my local hospital called me this morning to follow up after my evaluation appointments last week. Apparently the social worker that I met with thinks that I am depressed and would like me to touch base with a psychologist. I phrased that as if I didn't know perfectly well that I am depressed. Of course I am.
This isn't my first attempt at a kidney transplant. I tried this 8 years ago while I was in college. I was Christian then, and had spent the years leading up to the surgery praying and believing that God had my back. Whether or not there is a God and whether or not He heard me, all of that praying was really me psyching myself up and hoping. Once the kidney was in me, it didn't work. Still I prayed. I spent a week in the hospital being loaded down with 10 liters of saline to jump start the kidney while nothing happened. Every second that it didn't work broke my heart a little more. When it finally woke up and began to work, it immediately showed symptoms of the disease which caused my native kidneys to fail in the first place. My heart broke a little more.
I still found some hope though, because after all, my native kidneys hadn't failed over night. I had some time before I would have to be back on dialysis. Everything was just fine, I told myself, and after all, it could be worse.
When I went in for a follow up appointment with the transplant clinic, I found out that my body was rejecting the kidney and underwent a heavy steroid treatment. My heart broke some more.
Over the course of the next month, I rejected my kidney 3 times, each time fighting the rejection with a steroid that messes with your appetite, weight, mood, and general sense of self. I had 5 kidney biopsies, learning along the way that if I am going to have a mini-GrabIt poked into my abdomen and have to listen to it grab a chunk of my kidney, I am going to require a Valium. Did I mention that I was taking a full course load at a large state university four hours away? I didn't have much heart left by this point.
It did eventually calm down, and with a regular treatment called plasmapheresis I was able to keep the kidney for 6 years, but the reality was so far different from my hopes that I had had so much faith in, that I just haven't been the same since.
I know that I have changed from who I was before that transplant, and a big part of that is this depression. I don't feel that it is severe, but it is definitely constant. I can't seem to help the pity party; never forgetting that this is forever. I live, and I feel that sometimes I do a very good job of living. I form relationships and attachments. I have married the best man I've ever met. But I still feel apart from the world.
The transplant coordinator wanted me to see the psychologist to ascertain whether or not I have the necessary coping skills to make logical decisions regarding the kidney. I'd like to say that absolutely, I can take care of a kidney. I know what a gift it is to receive one, and I would never let that gift go to waste by not taking care of it.
But how do I know that this coming transplant won't change me further? Will I like who I become?
This isn't my first attempt at a kidney transplant. I tried this 8 years ago while I was in college. I was Christian then, and had spent the years leading up to the surgery praying and believing that God had my back. Whether or not there is a God and whether or not He heard me, all of that praying was really me psyching myself up and hoping. Once the kidney was in me, it didn't work. Still I prayed. I spent a week in the hospital being loaded down with 10 liters of saline to jump start the kidney while nothing happened. Every second that it didn't work broke my heart a little more. When it finally woke up and began to work, it immediately showed symptoms of the disease which caused my native kidneys to fail in the first place. My heart broke a little more.
I still found some hope though, because after all, my native kidneys hadn't failed over night. I had some time before I would have to be back on dialysis. Everything was just fine, I told myself, and after all, it could be worse.
When I went in for a follow up appointment with the transplant clinic, I found out that my body was rejecting the kidney and underwent a heavy steroid treatment. My heart broke some more.
Over the course of the next month, I rejected my kidney 3 times, each time fighting the rejection with a steroid that messes with your appetite, weight, mood, and general sense of self. I had 5 kidney biopsies, learning along the way that if I am going to have a mini-GrabIt poked into my abdomen and have to listen to it grab a chunk of my kidney, I am going to require a Valium. Did I mention that I was taking a full course load at a large state university four hours away? I didn't have much heart left by this point.
It did eventually calm down, and with a regular treatment called plasmapheresis I was able to keep the kidney for 6 years, but the reality was so far different from my hopes that I had had so much faith in, that I just haven't been the same since.
I know that I have changed from who I was before that transplant, and a big part of that is this depression. I don't feel that it is severe, but it is definitely constant. I can't seem to help the pity party; never forgetting that this is forever. I live, and I feel that sometimes I do a very good job of living. I form relationships and attachments. I have married the best man I've ever met. But I still feel apart from the world.
The transplant coordinator wanted me to see the psychologist to ascertain whether or not I have the necessary coping skills to make logical decisions regarding the kidney. I'd like to say that absolutely, I can take care of a kidney. I know what a gift it is to receive one, and I would never let that gift go to waste by not taking care of it.
But how do I know that this coming transplant won't change me further? Will I like who I become?
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