Babygirl failed to improve with the first two migraine treatments yesterday. So Neurology and Nephrology put their heads together and picked a third move. Steroids.
Cortisone-family steroids are a two-edged sword for sure. Babygirl takes prednisone 5 mg. daily. This is the lowest she's been on: At various times she been on twenty times as much, and some of the other 'flavors' of the drug (prednisilone among them) have been used in substantial doses as well. Prednisone is one of her anti-rejection medications. Its benefit is that it keeps her immune system from 'seeing' the new kidney. The other benefits of this class of drugs is that they can act as potent anti-inflammatories.
The down side of this class of drugs is a terrifying list of side effects. It makes you more likely to get infections. It causes osteoporosis, weight gain and diabetes. And long-term daily use can convince your adrenal glands that they are no longer needed in a crisis. Steroids are our foes.
And that last one is something no one really thinks about. Your adrenal glands do more than run your fight-or-flight responses. Or to be more precise, you need your fight-or-flight responses in many subtle ways aside from the ability to lift cars off of injured children.
Which brings us to Babygirl. Migraines have an inflammatory component, so high-dose steroids are frequently given to break protracted migraine attacks. This was tried once a couple of weeks ago, although strictly speaking she got a more moderate dose and a rapid taper. So trying a true high-dose pulse is a reasonable thought. Steroids are our friends.
But Babygirl has a fever, origin unknown. Steroids can make infections worse. Her heart has been racing, and her blood pressure is too low OFF of all of her antihypertensive medications. So adding more steroids seems, theoretically, to be a seriously bad idea until you think of this: Her adrenal glands should be producing adrenaline (epinephrine) and other hormones to increase her blood pressure under stress, and they are not. That 5 mg. of prednisone is telling her adrenal glands that they are not really needed right now, thank you. So her body's secondary defenses (fever for example) are trying too hard to fight something that they are not designed to fight.
So they have two reasons to give steroids. Therefore we are in the process of receiving "stress dosing." This is my first experience with using hydrocortisone as anything but a topical cream for bug bites. Babygirl is getting large doses IV every six hours. I failed to ask "how long?" Clearly we aren't going to make it home in time to go Christmas tree hunting this afternoon. I'm homesick.
DeeDee
Showing posts with label immune suppression. Show all posts
Showing posts with label immune suppression. Show all posts
Sunday, December 2, 2012
Sunday, September 9, 2012
Shaving.....
Among the many things that transplant patients need to think about are the many potential sources of infection. Some are obvious: Don't clean the cat box. Some are clear when you think about it: No raw veggies, scrub all the fruit. Some seem a bit obscure: No cold cuts. Babygirl and I have had plenty of talks about all of these. But today we tackled a tougher issue.
Beware. This was an icky conversation.
Most people are aware of MRSA (methicillin resistant Staph. aureus). This mutant skin germ developed in part because of overuse of antibiotics. Remember when everybody got a shot of penicillin 'just in case'? Or when every runny nose got amoxicillin or Ceclor? The germs remember. So now what was once a harmless commensile germ has become aggressive. Not only is MRSA harder to treat that ordinary Staph. aureus, it's MUCH more likely to cause infection. Studies vary, but it's probably safe to say that more than 1/4 of us are colonized with this bug at some point.
Now consider the current "war on pubic hair" (http://www.guardian.co.uk/commentisfree/2012/aug/07/pubic-hair-has-job-stop-shaving). It used to be that people shaved faces, armpits and legs. Now there really isn't any part of the body that isn't exposed to razors. And razors cause cuts - anything from microabrasions to flat-out needs-stitches lacerations. And applying a razor to a body part that can't actually be easily seen by the razor wielder? Waxing is not really any better. Yanking a hair out by the roots breaks the skin surface as well.
Doctors see a LOT of abscesses, far more in the last few years than we ever saw before. And we are seeing a tremendous increase in the number of abscesses located on the labia, inner thighs and buttocks, as well as the axillae. I don't go a week in my office without treating at least one, and the ER doctors see them at least daily. I've seen them spread inward to infect artificial joints. I've seen them spread through the bloodstream to the liver. And I've more than once had patients who developed severe kidney infections from them. And most of those people were healthy to begin with - not on Babygirl's immunosuppressants.
So today I discussed shaving habits with Babygirl. I frankly described abscesses and how they are treated (cut a hole, squeeze the ick out, insert packing and re-pack daily), and asked her to consider whether shaving was worth the risk of having total strangers looking at her private parts to see how bad the infection is. Or whether having an exquisitely painful lump the size of a walnut or bigger right where she has to sit seems like a good idea.
Like many parental warnings, I'm not sure whether it was an in-one-ear-out-the-other conversation, or something taken to heart (although to judge by the appalled look on her face I think and impression was made).
When I had my roses-and-ice-cream dreams about motherhood, I never imagined having to broach such a subject. Heck, they never even covered this in med school, let alone What to Expect While You're Expecting. I'd rather talk about teachers in Spandex.
DeeDee
Beware. This was an icky conversation.
Most people are aware of MRSA (methicillin resistant Staph. aureus). This mutant skin germ developed in part because of overuse of antibiotics. Remember when everybody got a shot of penicillin 'just in case'? Or when every runny nose got amoxicillin or Ceclor? The germs remember. So now what was once a harmless commensile germ has become aggressive. Not only is MRSA harder to treat that ordinary Staph. aureus, it's MUCH more likely to cause infection. Studies vary, but it's probably safe to say that more than 1/4 of us are colonized with this bug at some point.
Now consider the current "war on pubic hair" (http://www.guardian.co.uk/commentisfree/2012/aug/07/pubic-hair-has-job-stop-shaving). It used to be that people shaved faces, armpits and legs. Now there really isn't any part of the body that isn't exposed to razors. And razors cause cuts - anything from microabrasions to flat-out needs-stitches lacerations. And applying a razor to a body part that can't actually be easily seen by the razor wielder? Waxing is not really any better. Yanking a hair out by the roots breaks the skin surface as well.
Doctors see a LOT of abscesses, far more in the last few years than we ever saw before. And we are seeing a tremendous increase in the number of abscesses located on the labia, inner thighs and buttocks, as well as the axillae. I don't go a week in my office without treating at least one, and the ER doctors see them at least daily. I've seen them spread inward to infect artificial joints. I've seen them spread through the bloodstream to the liver. And I've more than once had patients who developed severe kidney infections from them. And most of those people were healthy to begin with - not on Babygirl's immunosuppressants.
So today I discussed shaving habits with Babygirl. I frankly described abscesses and how they are treated (cut a hole, squeeze the ick out, insert packing and re-pack daily), and asked her to consider whether shaving was worth the risk of having total strangers looking at her private parts to see how bad the infection is. Or whether having an exquisitely painful lump the size of a walnut or bigger right where she has to sit seems like a good idea.
Like many parental warnings, I'm not sure whether it was an in-one-ear-out-the-other conversation, or something taken to heart (although to judge by the appalled look on her face I think and impression was made).
When I had my roses-and-ice-cream dreams about motherhood, I never imagined having to broach such a subject. Heck, they never even covered this in med school, let alone What to Expect While You're Expecting. I'd rather talk about teachers in Spandex.
DeeDee
Wednesday, May 30, 2012
And the Results......
We got the biopsy results about 2 in the afternoon. She has significant lymphocytic infiltration in her kidney (well, Jorge's kidney) but no evidence of permanent rejection. In English? There is evidence of early acute rejection. There are no antibodies against the new kidney in her blood, but lymphocytes are the cells that make the antibodies. The fact that they are snooping around in her kidney, where they have no business doing more than passing through, is alarming. The fact that they haven't visibly gone on the attack yet, reassuring.
The bottom line is that they must be stopped. So today, tomorrow and Friday Babygirl is getting more steroids. A LOT more - for those who speak this language, she is getting prednisolone 300 mg. per dose. I can tell you from personal experience that 32 mg/day nearly made me insane, but so far she is merely giddy.
And speaking of giddy, the meds they gave her to overcome the tickling sensation of the biopsy procedure (yeah, really. Tickling?) had not worn off yet when she got up this morning. Those of you who have seen her trip over the carpet at church with a lit flame while accolyting will have to take my word for it: She surpassed all previously known levels of uncoordination. Picture the trajectory of Woodstock's flight, only on the ground.
Next news is on the neutrophils. She's still low, so they (after I nagged steadily for 36 hours) called a hematology consult. The went back to her original blood work, while on dialysis, and made a way cool graph of all her counts from then until now. I was able to pinpoint dates - transplant, last hospital stay, Neupogen injections.
They feel that this is related to the transplant/meds (well, okay, since she was never sick a minute before this) but admit it could be a random coincidentally timed separate disaster (okay, pick one, boys.). At this point they are going to watch what happens when they give the steroids. If it's transplant/med related, her counts will come up as a side effect of the steroids. If not, then they need to consider, at some point, whether her bone marrow will need to be looked at, which would give us another fun run with the sedation team, but that's a question for another (hopefully distant) day.
The best news is that they feel she can attend school if her count is over 500 (currently we've been out for counts under 1000). So barring some new disaster, she'll return to school on Monday.
So all in all it's not as bad as it might be. But these people owe a HUGE apology to Mr. and Mrs. O. If I had known we were going to be here for FIVE days instead of two they might have wanted to keep their car LOL. And frankly, if I'd have known we were going to be here for five days I'd have brought more clothing (and some WINE).
DeeDee
The bottom line is that they must be stopped. So today, tomorrow and Friday Babygirl is getting more steroids. A LOT more - for those who speak this language, she is getting prednisolone 300 mg. per dose. I can tell you from personal experience that 32 mg/day nearly made me insane, but so far she is merely giddy.
And speaking of giddy, the meds they gave her to overcome the tickling sensation of the biopsy procedure (yeah, really. Tickling?) had not worn off yet when she got up this morning. Those of you who have seen her trip over the carpet at church with a lit flame while accolyting will have to take my word for it: She surpassed all previously known levels of uncoordination. Picture the trajectory of Woodstock's flight, only on the ground.
Next news is on the neutrophils. She's still low, so they (after I nagged steadily for 36 hours) called a hematology consult. The went back to her original blood work, while on dialysis, and made a way cool graph of all her counts from then until now. I was able to pinpoint dates - transplant, last hospital stay, Neupogen injections.
They feel that this is related to the transplant/meds (well, okay, since she was never sick a minute before this) but admit it could be a random coincidentally timed separate disaster (okay, pick one, boys.). At this point they are going to watch what happens when they give the steroids. If it's transplant/med related, her counts will come up as a side effect of the steroids. If not, then they need to consider, at some point, whether her bone marrow will need to be looked at, which would give us another fun run with the sedation team, but that's a question for another (hopefully distant) day.
The best news is that they feel she can attend school if her count is over 500 (currently we've been out for counts under 1000). So barring some new disaster, she'll return to school on Monday.
So all in all it's not as bad as it might be. But these people owe a HUGE apology to Mr. and Mrs. O. If I had known we were going to be here for FIVE days instead of two they might have wanted to keep their car LOL. And frankly, if I'd have known we were going to be here for five days I'd have brought more clothing (and some WINE).
DeeDee
Tuesday, May 22, 2012
Aw, Crap......
I finally got a call from our nurse practitioner about yesterday's lab results. It's not pretty. The only really good news is that her tacrolimus level is adequate and not high enough to be the cause of all the bad news.
The bad news? Well, we already knew her creatinine was too high. But her bone marrow is not happy. Her anemia is worse, her white cell count is too low, and her neutrophil count is below 1000 again. It's not as bad as last time, but it's enough for us to need to keep her home from school until we get the results of the labs we're going to do on Thursday morning.
The worse news? There appears to be only one medication left on board that can be causing the problem with her bone marrow, and that's the mycophenylate. They already decreased the dose in case it was the cause of the problem originally, and they stopped two other medications. And they can't decrease it more because her creatinine is going UP which of course could be a sign of rejection and not merely dehydration.
And if her creatinine IS up because she was dehydrated, it was my fault. We drove to Philly on a hot afternoon, and Rhonda the Honda does not have functioning air conditioning. Babygirl slept, as usual, but I was pounding down water the whole way, and I should have made her do the same.
I guess we're going to have to start taking the big green van, but that will increase our gas costs about threefold, and I'm pretty sure it won't fit in CHOP's parking garage. We simply cannot afford to fix the AC in Rhonda for a while.
Lord.
And that's a prayer, not a cuss.
DeeDee
The bad news? Well, we already knew her creatinine was too high. But her bone marrow is not happy. Her anemia is worse, her white cell count is too low, and her neutrophil count is below 1000 again. It's not as bad as last time, but it's enough for us to need to keep her home from school until we get the results of the labs we're going to do on Thursday morning.
The worse news? There appears to be only one medication left on board that can be causing the problem with her bone marrow, and that's the mycophenylate. They already decreased the dose in case it was the cause of the problem originally, and they stopped two other medications. And they can't decrease it more because her creatinine is going UP which of course could be a sign of rejection and not merely dehydration.
And if her creatinine IS up because she was dehydrated, it was my fault. We drove to Philly on a hot afternoon, and Rhonda the Honda does not have functioning air conditioning. Babygirl slept, as usual, but I was pounding down water the whole way, and I should have made her do the same.
I guess we're going to have to start taking the big green van, but that will increase our gas costs about threefold, and I'm pretty sure it won't fit in CHOP's parking garage. We simply cannot afford to fix the AC in Rhonda for a while.
Lord.
And that's a prayer, not a cuss.
DeeDee
Saturday, April 28, 2012
The Paralysis of Fear....
Babygirl's been sick for more than a year now. I've been worried, saddened, angered and disappointed. I've had a million emotions, but until this week I think I really did not have Fear.
I've felt it before. There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game. She missed, and went down like a bag of bones. There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.
But both of those times the fear was motivating. It made me alert to the risks, and more able to take action. It wasn't like this. This is paralysing.
I've always thought that it's tougher to be a parent when you know what can go wrong. Kids with eating disorders and asthma die, for sure. But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.
In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health. This illness, this hospitalization, were caused by medications given ostensibly to save her life. Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today than yesterday. If things pick up we may go home tomorrow. Or not. And there is now way she's going to school for at least a week, maybe two.
I have never seen the fight so taken out of a child. I never expected my Babygirl to look so beaten. I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.
I make these kinds of decisions for and with patients all the time. ALL the time. I'm not sure how I'll be able to organize my mind to continue doing so.
DeeDee
I've felt it before. There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game. She missed, and went down like a bag of bones. There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.
But both of those times the fear was motivating. It made me alert to the risks, and more able to take action. It wasn't like this. This is paralysing.
I've always thought that it's tougher to be a parent when you know what can go wrong. Kids with eating disorders and asthma die, for sure. But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.
In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health. This illness, this hospitalization, were caused by medications given ostensibly to save her life. Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today than yesterday. If things pick up we may go home tomorrow. Or not. And there is now way she's going to school for at least a week, maybe two.
I have never seen the fight so taken out of a child. I never expected my Babygirl to look so beaten. I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.
I make these kinds of decisions for and with patients all the time. ALL the time. I'm not sure how I'll be able to organize my mind to continue doing so.
DeeDee
Friday, April 27, 2012
It's Like Having AIDS......
People have been in touch, but the computer here is so slow that I can barely load FaceBook, let alone view the comments! Text messages are going out in groups, and coming back in droves. But some of the questions are fairly universal:
Have they figured out what is wrong yet? Nope. This is really a two part question - first, what is causing the fever? Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds? If so, which one(s)? Virus? Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'
How is she doing? Better. The good news is she ordered chocolate chip pancakes for breakfast. The bad new is that she could only eat one bite and has been doing only clear liquids since. The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!
Is this a sign that she is rejecting the kidney? No. The kidney is managing pretty well and appears not to be involved in the fever in any way.
How serious is this? Very. At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason.
What's the plan? They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils. They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow. We stay until her immune system starts to pick back up.
How long do you think you'll be there?
As long as it takes.
DeeDee
Have they figured out what is wrong yet? Nope. This is really a two part question - first, what is causing the fever? Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds? If so, which one(s)? Virus? Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'
How is she doing? Better. The good news is she ordered chocolate chip pancakes for breakfast. The bad new is that she could only eat one bite and has been doing only clear liquids since. The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!
Is this a sign that she is rejecting the kidney? No. The kidney is managing pretty well and appears not to be involved in the fever in any way.
How serious is this? Very. At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason.
What's the plan? They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils. They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow. We stay until her immune system starts to pick back up.
How long do you think you'll be there?
As long as it takes.
DeeDee
Tuesday, April 24, 2012
Out of School Again....
When we went to see the doctor yesterday, we discovered that Babygirl's white blood cell (WBC) count is very low. More importantly, she is neutropenic (critically short on neutrophils, the WBC's that fight bacterial infections). Since her meds already make it hard for her to fight fungi and parasites, taking out yet another arm of her immune system is a very, very bad idea.
This problem is a side effect of one of her meds. She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant. This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem. Well, crap happens, right?
The problem I'm having with this is that they knew LAST week that this was a problem. They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention. Problem is, they never told US, or called the new prescription to the pharmacy. So last week her WBC count was 2.7 (normal is 4.5 - 10). This week it's 1.4.
If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle. So she's home until the counts come up. We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.
And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat. There's no fever, and it doesn't look to terrible, so we ride it out. Yup, crap happens.
On the lighter side, you should SEE the medication she gets instead. It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick. It looks utterly disgusting. Poor Babygirl!
DeeDee
This problem is a side effect of one of her meds. She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant. This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem. Well, crap happens, right?
The problem I'm having with this is that they knew LAST week that this was a problem. They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention. Problem is, they never told US, or called the new prescription to the pharmacy. So last week her WBC count was 2.7 (normal is 4.5 - 10). This week it's 1.4.
If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle. So she's home until the counts come up. We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.
And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat. There's no fever, and it doesn't look to terrible, so we ride it out. Yup, crap happens.
On the lighter side, you should SEE the medication she gets instead. It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick. It looks utterly disgusting. Poor Babygirl!
DeeDee
Monday, February 13, 2012
Let's Suppress the Immune System!........
Every once in a while nearly everybody has one of those, "I really didn't think this through too well..." moments. Like when my brother, holding a bag of frozen peas at the top, used a letter opener to cut the bag. Completely across. We had to pick a new veggie for dinner, and I was finding peas in corners for weeks.
Some parts of kidney transplantation feel a bit like this. The good news is, we have a working kidney! The bad news is, we have to make her body not notice that it's new! While she was in ICU they gave her medication to a wipe out a large percentage of her infection-fighting white blood cells, and now we are suppressing the rest of her immune system with three really toxic drugs, all to make the new kidney "invisible."
For the kidney this is a great idea. If we fail to do this, her body will recognize that this is not her original kidney, and do it's darnedest to kill it quickly. For the kid, this is NOT a great idea. If her immune system can overlook two pounds of fresh kidney, it's also likely to overlook a few small viruses, some bacteria, and a fungus or two. If it does, she gets sick. Really, really sick. Maybe deathly sick.
For the time being we are avoiding exposure to new germs. We don't go shopping, won't go to the library, turned down an offer (difficult as you can imagine it was!) to tour the Three Stooges Museum. A trip to the local pharmacy for lip balm (after all, she can't share MINE anymore!) required extra layers for warmth and a face mask. We timed the trip for ten AM Sunday to avoid crowds, and succeeded. I am teaching Babygirl to spell all her meds, and to learn what each of the nine medications are for. Eventually she will learn the doses as well, but since the doctors are still adjusting doses, I'm waiting on that.
The hardest part of all of this is not teaching Babygirl to be careful. It's not teaching her about her medications. It's educating everybody around her! Her school wants to do her "home teaching" AT THE SCHOOL, or at the local library. Seriously? We have had several kind invitations to go out for dinner. Um, thanks, no can do. It's a bit difficult to wear a mask and eat at the same time.
This is one of those things that I am discovering is a lay person-versus-medical person thing. Like the "Are BOTH of her kidneys failing?" question (yes, of course, you only need one functioning kidney and she has neither), the "Can you take your immunosuppressed kid out to dinner?" question seems to have an obvious answer to ME that is clearly not obvious to everybody else.
Three of her new medications are for infection prevention. But there is no way that only three medications can prevent thousands of infectious diseases. Her vaccinations help. Her innate good health is certainly beneficial. But the single best thing we can do for her is to keep her away from any NEW germs. And for that, we mostly stay home.
So stop by, if you are healthy. Use the hand sanitizer by the door. Bring a meal? Thanks, but check with us about what's okay to eat THIS week, since it has totally changed since LAST week! And leave the little kids home. They are adorable germ incubators on feet.
DeeDee
Some parts of kidney transplantation feel a bit like this. The good news is, we have a working kidney! The bad news is, we have to make her body not notice that it's new! While she was in ICU they gave her medication to a wipe out a large percentage of her infection-fighting white blood cells, and now we are suppressing the rest of her immune system with three really toxic drugs, all to make the new kidney "invisible."
For the kidney this is a great idea. If we fail to do this, her body will recognize that this is not her original kidney, and do it's darnedest to kill it quickly. For the kid, this is NOT a great idea. If her immune system can overlook two pounds of fresh kidney, it's also likely to overlook a few small viruses, some bacteria, and a fungus or two. If it does, she gets sick. Really, really sick. Maybe deathly sick.
For the time being we are avoiding exposure to new germs. We don't go shopping, won't go to the library, turned down an offer (difficult as you can imagine it was!) to tour the Three Stooges Museum. A trip to the local pharmacy for lip balm (after all, she can't share MINE anymore!) required extra layers for warmth and a face mask. We timed the trip for ten AM Sunday to avoid crowds, and succeeded. I am teaching Babygirl to spell all her meds, and to learn what each of the nine medications are for. Eventually she will learn the doses as well, but since the doctors are still adjusting doses, I'm waiting on that.
The hardest part of all of this is not teaching Babygirl to be careful. It's not teaching her about her medications. It's educating everybody around her! Her school wants to do her "home teaching" AT THE SCHOOL, or at the local library. Seriously? We have had several kind invitations to go out for dinner. Um, thanks, no can do. It's a bit difficult to wear a mask and eat at the same time.
This is one of those things that I am discovering is a lay person-versus-medical person thing. Like the "Are BOTH of her kidneys failing?" question (yes, of course, you only need one functioning kidney and she has neither), the "Can you take your immunosuppressed kid out to dinner?" question seems to have an obvious answer to ME that is clearly not obvious to everybody else.
Three of her new medications are for infection prevention. But there is no way that only three medications can prevent thousands of infectious diseases. Her vaccinations help. Her innate good health is certainly beneficial. But the single best thing we can do for her is to keep her away from any NEW germs. And for that, we mostly stay home.
So stop by, if you are healthy. Use the hand sanitizer by the door. Bring a meal? Thanks, but check with us about what's okay to eat THIS week, since it has totally changed since LAST week! And leave the little kids home. They are adorable germ incubators on feet.
DeeDee
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