Questions about initial eval and testing, and coping

[rfranzi]

Hi all. First of all, I have to say that I am grateful for this site and the people on it. Having said that,.....

I am meeting with a transplant team next month. What I know is it will include a class and a meeting with the surgeon, nephrologist, social worker and a finance person. I guess I will find out what the testing involves then, but am curious as to other people's experience and how extensive it is. I am trying to decide, pre-emptively, whether or not to pursue a transplant. I think it is the right way to go for me, that is if they deem me healthy enough. I hate doctors generally, have no trust and don't like the idea of having to see them as often as I do now. So, going to dialysis three times a week is not appealing.

My creatinine is hovering around 2, my protein is through the roof, and I am stable for the moment. My nephrologist and I have decided against steroids and rituximab due to the side effects. I am currently being treated for anxiety, ptsd and depression so this would just send me over the edge. Also, I don't feel comfortable with the "shot in the dark" approach of these drugs. I would be more comfortable in a clinical trial, if I could find one. But that's besides the point.

Obviously, when my kidney function drops I may need dialysis and I know this. But I do prefer the idea of an operation that can restore some normalcy to my life ultimately. But for now, my gut instinct is to pursue the transplant option.

I should also mention that I am alone. Like, completely alone. I have a grown son who is about to take a job in Ireland (I live near Seattle). Honestly and I know this sounds terrible, but he might as well, because since I found out I had this disease (fibrillary glomeronephritis) last fall and reached out to him to spend more time together, he seems to be avoiding me like the plague and is taking no interest in my disease. When I first found out, I imagined he'd be knocking at my door and sending me all kinds of internet research on kidney disease, but the opposite happened.

I moved to Seattle from the East Coast about 7 years ago to put my son through college. My career ended in 09 and so the friendships I was developing out here have faded away as we had less in common when our mutual activies were taken away. I am trying to be productive and do my own research and so on, but I am fighting a mother of a depression, and I am just broken hearted. The only real support system I've found is other people with this disease online. There aren't any in person at the hospitals or anywhere that I've found.

I am trying to stay in the moment, and I am trying to be positive, but I admit it is a struggle. I am trying to get out of my comfort zone and meet new people, but people are so hostile, it sends me back to the solace of my humble abode.

I admit I haven't done enough research and educating myself about dialysis and transplants, because I have just felt overwhelmed with it all. So, here is a start. I guess my post is part question and part sharing, but I just had to be honest about where I'm at. I would appreciate hearing about how other people deal with some of the issues and questions I spoke of. Thank you for all of your courage and support.

[willowtreewren]

My heart goes out to you, rfranzi!

I realize that the friends you meet on-line cannot make up for being with others in the flesh and blood, but hopefully it is better than nothing.

I notice that you have made a few posts and I hope you have gotten some feedback.

FWIW, even if you don't like doctors and seeing them, it still makes sense to go for your transplant evaluation. That leaves the door open for the future.

 

I'll be thinking of you.

Aleta

[cattlekid]

I had my transplant evaluation in late February.  Like you said, I met with a transplant surgeon, PA and SW.  We also had a group class where the transplant surgeon and the head transplant nurse gave an overview of the transplant process and the program.

The meeting with the surgeon and PA was quick and easy.  There was just a brief medical exam and review of my history.  The surgeon then chose all of the tests that he wanted me to complete prior to being listed.  Here's the tests that I had to go through:

Bloodwork, including blood typing
EKG
Chest X-ray
Nuclear stress test (due to an anomaly being found on the EKG)
GI clearance, including colonoscopy (due to my history of ulcerative colitis)

I was semi-lucky in that my Pap and mammogram were both up to date, if those are not up to date, you'll have to have them as well (if they apply to you). 

The SW meeting was pretty uneventful, she just wanted to make sure that I had adequate insurance and was starting to think about my care plan post-transplant.  She also explained the Medicare requirements as well.

Unlike others have found, my center did not have a requirement that I have a care partner attend this evaluation with me. 

I was given a deadline of twelve weeks to complete all of the necessary testing.  The coordinator explained that the deadline was just necessary to make sure that patients don't drag their feet if they have a lot of testing to do.  I had all of my required tests done in eight weeks.

I agree with you that in-center dialysis is the worst.  Unfortunately, I did not have very much of a choice as I went from a creatinine of 1.2ish to over 9 in the space of three months.  This was after years of having my creatinine hover in the 1-1.2 range.  It was pretty much an emergency situation as I could not even walk more than 10 feet without having to stop and rest due to the fluid buildup. 

It is good that you are addressing your options now - I was calling the transplant center from my hospital bed after getting my chest catheter placed and my first dialysis session.  Even though I literally changed colors (for the better!) during my first dialsysis session, I knew that this was not the way I wanted to live for the rest of my life, considering that I am relatively young (only 40).  It irritated me to no end that I had to wait four weeks for the transplant evaluation meeting - I wanted answers NOW!  Then when I left the transplant evaluation, I was calling to set up the testing appointments the same afternoon.  No time like the present!

As far as the support system goes, would it be feasible for you to move back to the East Coast if that is where your friends and family are from?  I would hate to see you stuck in Seattle with no support system.

[rfranzi]

Thank you so much for that. It meant very much. All the best to you. I keep you all in my prayers as well.

My heart goes out to you, rfranzi!

I realize that the friends you meet on-line cannot make up for being with others in the flesh and blood, but hopefully it is better than nothing.

I notice that you have made a few posts and I hope you have gotten some feedback.

FWIW, even if you don't like doctors and seeing them, it still makes sense to go for your transplant evaluation. That leaves the door open for the future.

 

I'll be thinking of you.

Aleta

[rfranzi]

Thank you for sharing, that is helpful. I have considered moving back, although I think I would have trouble with the climate. I am hoping to reach out and find more support/friendships here. I don't sound like it today, but I have been a very strong, independent person in my life. Hey, I moved 3,000 miles so my son could attend the college of his choice and I raised him alone, having put myself back through college twice. I used to think I was superwoman and that I could do anything! (lol) The superwoman syndrome may have indeed burnt me out.....live and learn. We'll see, I also just found a neprhologist I like (he is my fourth try), so lots to figure out. While I am tempted to go into denial about the whole kidney disease, I will show up for the transplant evaluation and my doctors appointments, I do take my meds and so on. The great thing about this site is I can be pro active in my own disease (you have to be when doctors only have 15 min every 2 months to spend educating you and treating you) and b*tch about it at the same time, safely. Hanging in there and trying to get with the program. Thanks again, it really helps a lot to hear others experience. All the best.

I had my transplant evaluation in late February.  Like you said, I met with a transplant surgeon, PA and SW.  We also had a group class where the transplant surgeon and the head transplant nurse gave an overview of the transplant process and the program.

The meeting with the surgeon and PA was quick and easy.  There was just a brief medical exam and review of my history.  The surgeon then chose all of the tests that he wanted me to complete prior to being listed.  Here's the tests that I had to go through:

Bloodwork, including blood typing
EKG
Chest X-ray
Nuclear stress test (due to an anomaly being found on the EKG)
GI clearance, including colonoscopy (due to my history of ulcerative colitis)

I was semi-lucky in that my Pap and mammogram were both up to date, if those are not up to date, you'll have to have them as well (if they apply to you). 

The SW meeting was pretty uneventful, she just wanted to make sure that I had adequate insurance and was starting to think about my care plan post-transplant.  She also explained the Medicare requirements as well.

Unlike others have found, my center did not have a requirement that I have a care partner attend this evaluation with me. 

I was given a deadline of twelve weeks to complete all of the necessary testing.  The coordinator explained that the deadline was just necessary to make sure that patients don't drag their feet if they have a lot of testing to do.  I had all of my required tests done in eight weeks.

I agree with you that in-center dialysis is the worst.  Unfortunately, I did not have very much of a choice as I went from a creatinine of 1.2ish to over 9 in the space of three months.  This was after years of having my creatinine hover in the 1-1.2 range.  It was pretty much an emergency situation as I could not even walk more than 10 feet without having to stop and rest due to the fluid buildup. 

It is good that you are addressing your options now - I was calling the transplant center from my hospital bed after getting my chest catheter placed and my first dialysis session.  Even though I literally changed colors (for the better!) during my first dialsysis session, I knew that this was not the way I wanted to live for the rest of my life, considering that I am relatively young (only 40).  It irritated me to no end that I had to wait four weeks for the transplant evaluation meeting - I wanted answers NOW!  Then when I left the transplant evaluation, I was calling to set up the testing appointments the same afternoon.  No time like the present!

As far as the support system goes, would it be feasible for you to move back to the East Coast if that is where your friends and family are from?  I would hate to see you stuck in Seattle with no support system.

[MooseMom]

Hiya!  I find myself nodding in agreement with so much in your post.  I am lucky that I have a supportive husband, but I have no friends nor other family around, and his family is the very opposite of supportive, so I often feel like I'm in this alone.  My husband has a very demanding job, and while in theory he is right with me, in reality he is not.  Not his fault, just the situation as it is.

Having sufficient support after transplant surgery does seem to be a concern at most transplant centers.  Mainly, you need to be able to get to your many appointments post-surgery; they will take labs obsessively, and you need to show up.  You need to take your meds on time.  So, if you don't have family or friends around who could help with that stuff, make an alternative plan.  If you had an accident tomorrow and needed surgery, how would you cope once you got home?  It's the same question.  So, maybe you can start thinking about this.  Could you investigate hiring someone to help you?  I know we're talking a fair amount of money here, but the transplant center doesn't care what your support system is as long as you some semblance of one.

My transplant eval took about three hours.  It was mainly just me and the coordinator, and then a chat with the surgeon along with a cursory examination.  I got a list of tests they wanted me to complete.  The most important thing I got out of it was my coordinator's email address at the hospital so that I could just email her with questions that popped into my mind at 3 in the morning.  She's very good about getting back to me quickly.  Good communication is key.

Remember that you are interviewing THEM for the job.  They may decide you are a great candidate for transplantation, but you might decide they are not the ones to whom you will go for that service.  They have to show what they can do for you. 

I understand the idea of feeling very alone and of, ironically, this making you less desirous of getting out and meeting people.  I went through exactly the same thing.  I forced myself out of my comfort zone and signed up to volunteer at our local hospital, reuniting patients with their family members after day surgery.  It was the hardest thing I had ever done, but 1. it got me out of the damn house, 2. it made me aware that I wasn't the only one suffering from a terrifying malady, 3. it got my mind off of myself, which is great because I often bore myself silly. 

I have spent the past seven years researching dialysis and kidney disease, and I'm still learning new things.  You are right; it is very overwhelming.  You want to be pro-active and educated, but at the same time you don't want to become so immersed in all things renal that you end up having no life.  Been there, done that.  Soon you will reach the point when you finally recognize that you've learned all that is potentially helpful to you at this time.  I'm always reminding myself that it is pointless to look too far into the future because when you see how fast things are progressing in the renal community, the future will look quite different by the time we get there, if you see what I mean.

You've made a good start by joining IHD!

[paris]

I hope you make some good friends here.  I have and they have helped me every step of the way.  "In person"  friends have avoided me.  They don't know what to say because they don't understand this disease.   Every one here understands.   Also, there are members of IHD in the Seattle area.  Maybe there could be a lunch meeting together?   Meeting people in person will bond you for life! 

The evaluation process isn't too bad.  Tests we probably all should have anyway!   I use to hate doctors (my Mom was a hypochondriac).  But one transplant surgeon explained that the tests aren't there to rule me out.  They do them so they can fix anything before going ahead with a transplant.  My opinion of doctors has changed greatly.  Mine do care about me.  I am very complient.  I treat the transplant team with respect and they do the same with me.  Several have told me that I am the most informed patient they have had ---thank you IHD!!   Try to remember that they are on your side. 

Keep asking questions.  Some one here will have the answer.  You have our support and friendship.            Good luck with the process. 

[Chris]

Remember that you are interviewing THEM for the job.  They may decide you are a great candidate for transplantation, but you might decide they are not the ones to whom you will go for that service.  They have to show what they can do for you. 

I would also say that they are also interviewing you.
 
Also if I can help you in some way MM, I'm a train ride away to the city.

[rfranzi]

Thank you for your comments and encouragement. It is greatly appreciated.

I hope you make some good friends here.  I have and they have helped me every step of the way.  "In person"  friends have avoided me.  They don't know what to say because they don't understand this disease.   Every one here understands.   Also, there are members of IHD in the Seattle area.  Maybe there could be a lunch meeting together?   Meeting people in person will bond you for life! 

The evaluation process isn't too bad.  Tests we probably all should have anyway!   I use to hate doctors (my Mom was a hypochondriac).  But one transplant surgeon explained that the tests aren't there to rule me out.  They do them so they can fix anything before going ahead with a transplant.  My opinion of doctors has changed greatly.  Mine do care about me.  I am very complient.  I treat the transplant team with respect and they do the same with me.  Several have told me that I am the most informed patient they have had ---thank you IHD!!   Try to remember that they are on your side. 

Keep asking questions.  Some one here will have the answer.  You have our support and friendship.            Good luck with the process.

[Jie]

    Rfranzi.

You are at Seattle and you don't want steroid. I am not sure there is still any non-steroid center at Seattle. SMC used to be 100% steroid free center. However, it went through a leadership change during the last two years and now it uses steroid during the first 4 days post transplant. It is only for 4 days. I heard three years ago that VM had 50% steroid free and 50% with steroid. UW seems to be a 100% steroid center. Have you found any of these three centers which will not use any steroid?

[Deanne]

I just finished the transplant evaluation in Oregon. I treated the whole process as a job interview. Mine went like this:

Day 1: 8 am - 2 pm
Meet with dietician (I had to fill out a diet form for this. If you have eating issues, you might want to work on them now.)
Three-hour training class (required to bring a friend/"caregiver")
Three vaccinations (tetanus, Hepatitis A, pneumonia)
Meet with nephrologist

Day 2: 8 am - noon
Blood draw (20 tubes)
Abdominal ultrasound
EKG
Chest X-ray
Meet with social worker (be prepared for questions about post-surgical care)

In addition to the tests above, my gynecologist needed to fax over the results of my recent gyn appointment, and now I need a follow-up CT scan because the ultrasound showed a cyst on my pancreas. I also need a follow-up ultrasound in December because they say pollyps on my gallbladder. I also need to provide a dental release, eye check form, post-surgical care sheet (several pages of "who will do xyz for you" after surgery). I need a series of hepatis B vaccines and a follow-up hepatis A vaccine.

I think the care form is the biggest challenge. Like you, I live alone. My family is all in Minnesota. My impression is that it's critical to find people who'll commit to providing post-surgical care. I talked to two transplant centers and this struck me as one of the biggest concerns of both places. Centers won't list someone without knowing the care system is in place.

The first center I tried I rejected because their care requirements were so stringent. They wanted someone attending every appointment with me, including all appointments for the evaulation. They refused to talk to me unless I could provide the name of the person who would be attending each appointment with me.

The center I'm at now wanted someone there for the training portion only and they want me to provide information about who will be doing things for me after the surgery. I can live with these requirements. In addition to having someone haul you to appointments three times/week after surgery, first thing in the morning, I learned there are lifting restrictions of 10 pounds for a month or two. Ten pounds isn't much.

I hate steroids, too. I tried them to treat my disease with horrible results. I'm not diabetic but ended up in the hospital with a blood sugar level of 1500 (not a typo). Within two weeks, I had trouble walking because of the muscle-wasting. Someone bumped into me once - just gently. I ended up flat on my back, whopped my head hard on a concrete floor, and couldn't get back up without help. Living alone like this was scary, but I got through it. I dread having to go on steroids again, but I know I have to and I know I'll find a way to manage. The transplant center knows I had a hard time with them and they said they'll reduce my dose as fast as possible and watch my blood sugar level very closely. I appreciate they know it's h*ll and will help me through it.

I understand your disappointment with your son. I can understand his point though, too. He's a grown man now. He wants/needs to build his own life. While I know it's hard for you not to be able to count on him the way you'd like to, congratulation yourself on raising a normal man who's adventurous enough to strike out for new territory.

In what ways are you finding people hostile to you? Have you analyzed this? Since having post-surgical care is a show-stopper for the transplant centers, it's worth thinking about to see if there are things you can do differently to draw people to you. I'm not a social person either, so it's something I've been paying attention to in myself. I try to be as kind as I can to people. I try to notice when people need help and I offer assistance. I grow veggies and sometimes bake and give some of it to my friends and neighbors. In general, I try to be a giving kind of person without asking for much in return.

MooseMom's idea of volunteering is a great one!

[rsudock]

I understand your disappointment with your son. I can understand his point though, too. He's a grown man now. He wants/needs to build his own life. While I know it's hard for you not to be able to count on him the way you'd like to, congratulation yourself on raising a normal man who's adventurous enough to strike out for new territory.

So what if he is a grown man...his mother gave him life. She needs his help now. Families need to understand NO ONE is guaranteed good health. If for some reason he would get sick, I suspect he would want his mom to be there for him. Sometimes in life you have situations come up and are force to make a decision do what I think is best for me or help someone I love? The son sounds like a jerk to me....sorry I love my family and would do whatever it takes to help them, but of course I am the one who is sick....If you can't count of your family who can you count on?

xo,
R

[rfranzi]

Thanks, all, you both make good points, and I have felt conflicted regarding my son. On the one hand, I don't want to be the mother who is inappropriately needy and all that, but I feel let down and hurt. I feel like hey, we are the only family each other has, it's been he and I against the world all these years. And yes, I was successful in raising a self supporting, independent young man who I am very proud of, or was until I got sick. Any young man that continues to earn my pride would not turn his back on his mother. He hasn't completely done that, don't get me wrong, but we do need to communicate better and it will take some time.  It is great to be able to vent here, but it is him I need to talk to. I think he is amenable to helping me post surgery, but I think he is having a very hard time accepting and understanding my disease, because I don't always look or appear sick. My doctors were so grim when I was first diagnosed, that I tried to reach out to him to spend more time and get to know one another better, because I really felt like an expiration date had just been stamped on my forehead. It is only by coming to this site and reading about other people who are living successful lives, living with dialysis, and having successful transplants and I felt less despondent and more hopeful. I quit smoking, started excercising and altered my diet. I am talkiing on here. I see a counselor every week for my depression and so on. I stepped back from my son to give him time. I didn't mean to come on so strong, I just really felt time was of the essence.  The timing couldn't be worse for both of us, me an empty nester and he, asserting his new found independence. He was always a wonderful son who never gave me any trouble. His father passed away last year, though we seperated when my son was a year old and I think this is just hard on both of us and we have different ways of dealing with it. Lately I feel very disconnected as he is not really talking to me about it. And I feel hurt that he seems uninterested in my disease and what is going on with me, or in getting to know me better, or in learning about who I am. I don't want to be angry with him, but it is not often that I reach out in that kind of vulnerable way, and it really hurts to feel rejected when you do. So, yeah, we need to talk to one another in the right way. I spoke with him today and told him that I needed to talk with him and asked to get together soon. I requested that he not drive his motorcycle to see me today, July 4th as I worry about him on that thing. So, next week, I will make an attempt to have a candid conversation and repair whatever feelings may be bruised. We have always been very close and until now I was always the strong one.

[rsudock]

I hope the conversation opens up the lines of communication and you both can feel happy about how to go from here and move forward. It is hard being vulnerable and feeling like no one is holding your hand....thinking of you!   


xo,
R

[rfranzi]

I am glad to report that I had a good conversation with my son. He is attending the transplant evaluation with me and has told me he will be there for post transplant support when I need it. He is 25 years old and I know it is never a good time for anyone to get sick, but the timing really sucked here. He was just becoming independent as I always had strongly encouraged. I raised him alone, working two or more jobs and going to night school. I put him through college. We made it to europe and I managed private school for him for a while. I always told him we could do anything if you were willing to work for it and wait for it. Then these past couple of years, I couldn't do all of that any more. At first I didn't know I had the kidney disease, but I crashed hard. My anti anxiety meds stopped working, I was completely burnt out and exhausted, I was nauseaus and just feelling ill. I went for a physical last fall and was diagnosed. So I know it has been hard on him. And honestly, I remember what it was like to be 25. But this child was always a loving, supportive kid who loved animals and offered to help at guest's homes. He never gave me a day's worth of trouble, so I was a bit shocked when I felt like he was being distant. After our talk, I felt like I had my son back. I had stepped back for a while prior to our talk, to assess whether I was in fact coming off as needy, to gather my thoughts and write them out, to give him time to process things. So finally, when we did talk, even though waiting sometimes felt excruciating, it came out right and we had one of those good conversations. I think, having recently quit smoking, I may have indeed been being a bit ultra sensetive, but I also was able to state my needs in an appropriate way and feel like they were heard and received. I appreciate the support I've received here. At the end of the day, it's definitely up to me to do the work. I have stepped out of my comfort zone and started to make a new friend, and am taking a water excercise class to get my fitness in. And as a consequence, feeling a bit less alone. Amazing what a difference a day makes. Thanks so much for all of your kind support. Moving straight ahead....

[Deanne]

Well done all around! 

[MooseMom]

This is such terrific news.  In re-reading your previous posts, a few things come to mind.  One is that you worked hard to bring up your son to be independent.  That's a great lesson, but there are many other lessons to be learned along the way, and those are things like compassion, empathy and the desire to help someone who is in some difficulty.  Your son now has the chance to learn THOSE lessons, and it sounds like he is well on his way.  Your post surgery need for help won't go on forever; it's not like you are asking him to change his life completely to look after you for the next 20 years.  If he can just get you to your appointments, that would be an enormous help.

I also wanted to speak to you about being the "strong one".  Dealing with CKD/ESRD takes an inordinate amount of strength and courage, so don't sell yourself short.  Needing help with a health issue doesn't make you weak or needy.  It makes you pretty much like most people.  Most people I know have some chronic health issue.

[Jie]

... I managed private school for him for a while.

As a single parent working on two jobs, the cheapest way to get your son through college in the U.S. is to send him to a good private college.

Glad things work out for you.

[rfranzi]

You are right on. Lessons to be learned all around. I had to learn to ask for help. And he had to learn to, well, help and also to be compassionate. At first, it seemed like a curse and I fought it. But I can already see how we have both grown and will be closer still through this. It is never too late or too early to learn these things, and also how to talk to one another. So many things to learn.

Necessity being the mother of invention, we are a small family, so there is not siblings for either of us to help shoulder the burden, unfortunately. I am an only child and so is my son. My mom is still alive, but she is on the East Coast and we are near Seattle. My son's dad passed away last year. So it is just the two of us as things go. For this reason we have always been very close. My instinct was first to protect him and sugarcoat the whole thing, and it took a lot to reach out and ask for his support. But I cannot explain the joy I felt when his response was, without hesitation, of course, mom, your health is the most important thing. It meant the world to me. I feel like, okay, I can do this now.

This is such terrific news.  In re-reading your previous posts, a few things come to mind.  One is that you worked hard to bring up your son to be independent.  That's a great lesson, but there are many other lessons to be learned along the way, and those are things like compassion, empathy and the desire to help someone who is in some difficulty.  Your son now has the chance to learn THOSE lessons, and it sounds like he is well on his way.  Your post surgery need for help won't go on forever; it's not like you are asking him to change his life completely to look after you for the next 20 years.  If he can just get you to your appointments, that would be an enormous help.

I also wanted to speak to you about being the "strong one".  Dealing with CKD/ESRD takes an inordinate amount of strength and courage, so don't sell yourself short.  Needing help with a health issue doesn't make you weak or needy.  It makes you pretty much like most people.  Most people I know have some chronic health issue.

[rfranzi]

Exactly what I did! Not easy for two parents today...

... I managed private school for him for a while.

As a single parent working on two jobs, the cheapest way to get your son through college in the U.S. is to send him to a good private college.

Glad things work out for you.

[MooseMom]

rfranzi, I'd like to tell you a story about protecting your kids.  As parents, of course we want to protect our kids from any and everything that might make them sad or afraid.  As you may or may not know, I have a son who is mildly autistic.  He is more vulnerable than most kids, and I could have chosen one of two paths...to wrap him in cotton wool or to toughen him up and help him understand that the world can be tough and that he needs to know that.

My mother had a cottage on the Mississippi Gulf Coast; it was the retirement home of her parents.  When they passed, my mom was left the house.  I've been going to that house since I was born, and although my married life took me to live in England, I would bring my son to the US several times a year, and from time to time, we'd visit Mississippi.  We happened to be there the week before Katrina hit.

Miraculously, the cottage survived despite being just 4 blocks from the beach, but just about everything else down to the beach was obliterated.  The news photos did not do justice to the devastation.  A year later, my son and I had the chance to return to the coast, and I was really in two minds about it.  I didn't know what his reaction would be to the destruction that was still very much apparent.  He loved that area of the world, and I didn't want him to see what had happened.  He doesn't always communicate his emotions very well, and I didn't want to unwittingly subject him to scenes that might be upsetting to him.

However, I also wanted him to know that bad things can happen but that people can survive them.  I wanted for him to see the real world and to appreciate the places he loved because they could be so transient.  So I decided that he should go and see it all for himself.  I explained the circumstances and told him what he was about to see.  I prepared him the best I could.  And he understood.  He expressed how sad it all was but also asked all the appropriate questions, like "how long will it take to all get back to normal?", etc.  I took him to the Friendship Oak, which is a sentimental favorite spot near the house; I had taken him there before, and he saw that even after Katrina, it still stood, and he was glad.

You can't protect your kids from life forever, nor would you want to, because that would leave them woefully unprepared for dealing with the hard knocks that life so consistently seems to serve up.

We always want to "do the right thing", but when we are struck with such devastating news like having a disease for which there is no cure, sometimes it is really hard to know just what "the right thing" is.  But you obviously did find "the right thing", and I'm so glad for you.

[rfranzi]

Thanks so much for your kind words and for sharing such an intimate story. So far I feel like this disease has brought out both the worst and the best of me. But yes, I agree that being a good parent is explaining as best you can and remembering that the support is mutual. Even though I am sick, I still have great advice, a funny joke here and there, and well, I will always be his mother, and that includes, like Kahlil Gibran said, you are the bows from which children as living arrows are set forth....thanks again for your support, and I admire how you handled returning to the South. Go Mom!

rfranzi, I'd like to tell you a story about protecting your kids.  As parents, of course we want to protect our kids from any and everything that might make them sad or afraid.  As you may or may not know, I have a son who is mildly autistic.  He is more vulnerable than most kids, and I could have chosen one of two paths...to wrap him in cotton wool or to toughen him up and help him understand that the world can be tough and that he needs to know that.

My mother had a cottage on the Mississippi Gulf Coast; it was the retirement home of her parents.  When they passed, my mom was left the house.  I've been going to that house since I was born, and although my married life took me to live in England, I would bring my son to the US several times a year, and from time to time, we'd visit Mississippi.  We happened to be there the week before Katrina hit.

Miraculously, the cottage survived despite being just 4 blocks from the beach, but just about everything else down to the beach was obliterated.  The news photos did not do justice to the devastation.  A year later, my son and I had the chance to return to the coast, and I was really in two minds about it.  I didn't know what his reaction would be to the destruction that was still very much apparent.  He loved that area of the world, and I didn't want him to see what had happened.  He doesn't always communicate his emotions very well, and I didn't want to unwittingly subject him to scenes that might be upsetting to him.

However, I also wanted him to know that bad things can happen but that people can survive them.  I wanted for him to see the real world and to appreciate the places he loved because they could be so transient.  So I decided that he should go and see it all for himself.  I explained the circumstances and told him what he was about to see.  I prepared him the best I could.  And he understood.  He expressed how sad it all was but also asked all the appropriate questions, like "how long will it take to all get back to normal?", etc.  I took him to the Friendship Oak, which is a sentimental favorite spot near the house; I had taken him there before, and he saw that even after Katrina, it still stood, and he was glad.

You can't protect your kids from life forever, nor would you want to, because that would leave them woefully unprepared for dealing with the hard knocks that life so consistently seems to serve up.

We always want to "do the right thing", but when we are struck with such devastating news like having a disease for which there is no cure, sometimes it is really hard to know just what "the right thing" is.  But you obviously did find "the right thing", and I'm so glad for you.