Mom of Newly Diagnosed 18 Year Old -- HELP!

[bboop]

Hi Doug,
Yes, it made me laugh that your orange tiger cat Lucy is actually Larry! Actually, I was told a number of years ago that for some reason, orange tiger-striped cats are almost always male -- I don't know why that is.

I am big into rescue and all of my cats have always been rescues. I hate to say it, but they've all been a bit messed up. Case in point: when my son was born, my neutered male cat started spraying me every time I'd nurse the baby. This was 18-years ago, so there were no antidepressants for cats back then. My vet put the cat on a tranquilizer and when that didn't work, on female hormones. That didn't work either, but we somehow "trained," the cat to only spray down in the basement, which was cement -- not finished thank goodness. We lined the basement with huge rolls of plastic that we'd change out every few months. But, I digress. Let's just say I will put up with just about anything from an animal -- call me crazy.

Fast forward to a year ago. Our cat (not the spraying one -- this one was a rather viscous biting one), died. I've always wanted a Maine Coon Cat and I finally decided that at the age of 56, I was going to break down and actually buy a purebred cat.

Whoa -- let me tell you -- this cat is *fantastic.* I'm not dissing rescue cats -- nothing of the sort -- but I've never met a cat quite like this one. He's more like a dog. He loves water and will splash in it and cup his HUGE paws and drink water out of his paws. He greets us at the door, trilling away (he doesn't mew, but trills). He follows me around the house nonstop and is a total love bug -- wants to be held and pet but doesn't make a pest of himself at all. We are all totally in love with this cat (all except the dog!), and my husband, who doesn't really like cats all that much, is completely smitten. So, that's my sort of cat story.

I hear what you're saying about Excel. I've mentioned here that my son has learning disabilities. The apple doesn't fall far from the tree. I too have LDs, mainly in spatial relationships and I cannot, for the life of me, figure out how to use or organize Excel. Many good and smart people have gone before you and failed in their explanations, so don't even try.

I can't believe what wonderful people you all are. I feel like from adversity, I've landed in a pot of gold.

bonnie

[Sangye]

Bonnie, I understand where your husband is coming from. Wegs is a very scary diagnosis with an unclear prognosis, so I'm sure the knowledge he has about it put him into shellshock. (As a holistic physician, I can tell you it did the same for me.) Wegs is barely covered in medical school-- most docs only learn that it's so rare they'll never see it and if they do, it's bad, bad news. Hearing from his peers that there's hope snapped him out of it and he probably feels that if he heard more about it, he might get scared or depressed again.

That very fear actually kept me from joining a support group for a whopping 2.5 years. My own case was so bad and relentless, that I worried if I heard anything worse I'd become despondent. The intense isolation finally got to be too much and a year ago I found this amazing group. For awhile I did get a little down. I'd only known what my doctors had told me (no Wegs doc then) and didn't realize how complicated Wegs is and how difficult to get to remission, etc.... Eventually I came to regard the uncertainty about Wegs as a positive, too. We don't know how bad things might get BUT we also can't predict how things turn on a dime for the better. Both happen all the time with Wegs.

Many MDs give little weight to anecdotal experiences. That's okay for diseases like cancer where the variables and responses are better understood. But Wegs is so rare that Weggies can tell you as much about the disease as the docs. Wegs specialists know to listen to their patients in a way that many MDs don't, because many of the signs of active disease don't show up on tests. My inflammatory markers don't increase until my lungs are fully hemorrhaging, even when I have signs/symptoms that indicate active disease. My blood work looks magnificent until I'm ready for the ICU. Hard to believe, but it's happened twice now.

Your hubby might not learn all this until he lives with it for awhile and sees how Wegs works. Meanwhile, give him the surgeon analogy since that's something he's familiar with. If he doesn't object, get your son to Dr Merkel and then you'll have piece of mind and more info. Sometimes with reluctant spouses you have to take action and they come around later!

[Sangye]

Forgot-- I'm 45 and was diagnosed at 42. I was nearly dead by diagnosis, having had Wegs for a year without knowing it. On my 3rd day in the hospital I developed uncountable leg and lung clots. (Weggies are 23% more likely to get clots) Between Wegs, the drugs and the clots I was so weakened. I couldn't stand long enough to brush my teeth for a year and was on oxygen for 1.5 yrs. I also lived at high altitude, which slowed my healing for sure! I've had a lot of complications--some life-threatening-- and haven't been able to work at all since June, 2006. I still can't walk a full grocery store. I have renewed hope that the new drug I just began will get this into remission and I can get strong and back to doing what I love.

[Jack]

I can echo Sangye's view that Weg patients often know more than their doctors.
The main clinic that handles my treatment is a Renal clinic that is associated with a vasculitis research unit. The doctors there listen to me and assume that everything that goes wrong is Wegener's or drug related until proved otherwise. However, when I have been referred to other departments, the blinkers go on and they try to treat just their own little speciality, usually assuming that the problem is being caused by an infection. In these cases, you often have to be bold and take control of the treatment.

[Doug]

I can echo Sangye's view that Weg patients often know more than their doctors.
The main clinic that handles my treatment is a Renal clinic that is associated with a vasculitis research unit. The doctors there listen to me and assume that everything that goes wrong is Wegener's or drug related until proved otherwise. However, when I have been referred to other departments, the blinkers go on and they try to treat just their own little speciality, usually assuming that the problem is being caused by an infection. In these cases, you often have to be bold and take control of the treatment.

As several of us have noted time and time again, weggies need to take charge in their care, to be their own advocate. Jack explains the why of it very well. If you don't take charge, you tend to be someone science experiment, win or fail. Weggies need to take the position of "I will be one of the 92% who survive and thrive with this disease!" On the positive side, I've found doctors appreciate an informed patient because explaining medical prodcedures, for example, take less time and they can be more sure the weggie understands the nature and ramifications of the treatment. There always will be the one like Jack describes above, however. Personally, I've found ENT doctors to be the worst listeners. Your experience may vary.

[bboop]

My son was released from the hospital today on 60 mg. of pred. He sees the rhemy @ Beth Israel on Friday and I'm certain she's going to put him on Cytox then.

The good news is that my husband just emailed Dr. Merkel at BU earlier today and said that we would take an appointment with him any day, any time, any hour. I'm hopeful that Dr. Merkel isn't traveling (I understand he speaks all over the world), and will be able to see us.

Unfortunately, I suffer from clinical depression and anxiety. I've been very stable on the same dose of antidepressant for 10-years or so now, but about two days ago I started becoming symptomatic. Scary for me -- very scary. The last thing I can afford to do right now is to go down the tubes -- my son needs me possibly more than he's ever needed me in his life. Damn brain chemicals. In any case, I have a call in to my psychiatrist who prescribes my meds and hopefully, he'll be able to pull me out of either my fear of spiraling down or actually spiraling down. Of course, not sleeping well for 3-weeks can do this too -- but I can't let myself go here.

bonnie

[Sangye]

Hooray! I'm so relieved. Very happy to hear that your husband really came around and is as interested as you are to have Dr Merkel's help. You won't regret it.

I recommend the book "The Gift of Fear." My therapist used it with me. The author says "The very fact that you fear something is solid evidence that it isn't happening."

His example : "As you stand near the edge of a cliff, you might fear getting too close. If you stand right at the edge, you no longer fear getting too close, you now fear falling." The falling person doesn't fear falling, they fear hitting the ground.

My example : In June I was hospitalized for the 3rd time in 2 months. I was really weak and had begun coughing up blood. My own Wegs doc wasn't able to treat me (long story) and the other JHU rheumys were in complete disagreement about the diagnosis and treatment. At one point, one of them was certain it was a Wegs flare. He said I needed to start cytoxan and 80 mg pred right away. That combo almost killed me in 2006/7.

It got worse. I have elevated intracranial pressure which can be worsened by pred. He said we needed to do a lumbar puncture first to measure my baseline pressure. So now it was lumbar puncture + cytoxan + high dose pred. THEN IT GOT WORSE. I'm on blood thinners due to a history of tons of clots, and if you do a lumbar puncture with blood that doesn't clot, you can become paralyzed. So he said, "We'll stop your blood thinners for a few days, then do the lumbar puncture, then restart the blood thinners and start 80 mg pred. And every few weeks we'll repeat all of it." Well, active Wegs makes you susceptible to blood clots, so stopping the blood thinner was terrifying. Also, because quickly lowering pred can cause the high intracranial pressure to worsen, if we started the 80 mg pred, it'd take at least a year to drop it slowly enough for me to get off it. And what if it wasn't even a flare??

By the time he explained all this, I was nearly under the bed with terror. He left the room and I began reciting to myself, "Are you on any pred right now? No? Then it isn't happening right now." I'd get terrified again, and ask myself "Is there an IV dripping pred into you right now? Are you in the middle of a lumbar puncture? Do you actually have new blood clots?" I stayed up all night (who could sleep?) telling myself this to stay calm. Morning rounds, and he returned. "I no longer think this is a flare." So all those things NEVER HAPPENED. It was amazing. Get the book!

PS It did turn out to be a flare, but my Wegs doc treated it much more conservatively!

[bboop]

As I said in my previous post, my husband emailed Dr. Merkel. Not only did Dr. Merkel call my husband within 15-minutes of receiving the email, he stayed on the phone with him for 45-minutes! He wants to see our son this week and is trying to fit him in on Thursday afternoon. I can't believe the generosity of this man. My husband liked him a lot. The only trick now is getting all of my son's records from BI tomorrow. Dr. Merkel wants some very specific things -- certain pathology slides, etc. and I just hope I'm able to get them from BI in a day -- normally these things can take a week.

I started feeling better this afternoon -- the anxiety seems at its worst in the morning and early afternoon. My psychiatrist is seeing me on Thursday morning and he'll pull me out, I'm sure. He thinks that once I get past the exhaustion and initial shock of things, I'll be OK. I certainly hope so.

I looked at the book you recommended on Amazon, Sangye. It appears to be about living in the moment, no? I didn't order it because I have a bunch of books about living in the moment and they've not helped me to date -- I really do have screwed up brain chemicals and when they're correctly balanced, well, I'm correctly balanced. When they're not correctly balanced, nothing helps because quite frankly, I can't think straight!

Sangye, I can't believe all that you've been through. This is a very scary, vicious disease, isn't it? Maybe that's why I'm becoming symptomatic myself. With all the medical knowledge we have in this country, it's amazing that they can save people's lives who have WG, but they don't understand the mechanism of how or why. And, like any parent, I don't want my son to suffer and I want him to be able to finish high school and go on to college - -which is what he wants to do more than anything.

bonnie

[Jack]

To try to put things in perspective a little - my general reading of the posts on this site leads me to think that there are far more Wegs patients out there in some form of stable condition and living fairly normal lives than ones who are in a real mess. The prognosis is generaly good these days if you get the right treatment.

[Carol]

So sorry that your son is burdened with this disease. It's 18 months since I was diagnosed and virtually everyday I feel an improvement. Things that helped me were to try to be as normal as possible in everytihing I did ---- so maybe going back to school is OK BUT it needs to be explained that to achieve even small things takes alot of effort and that rest will have to be built into his schedule. About 11am was usually when I felt the worst. The best kind of rest for me during the day was meditation - it is different to having a sleep. There are many prerecorded ones which you just listen to (on my Ipod) so it's not hard. Excellent diet is important and nutritious snacks ..... my weakness was cake so I made beautiful sorts of healthy cakes with real butter, good eggs, fruits, nuts, etc. Maybe you could make a good fruit cake for him to take to boarding school and lots of suplies such as nuts - I craved brazil nuts - dried fruit including dates, prunes etc. I always got up during the night for a cuppa and a snack for the first 12 months.
I'm sure a school that is catering for kids with learning problems can be very flexible and if it takes 2 years to do one year of school then maybe that's OK. i'm not sure how the US system works. For the first 3 months I certainly wouldn't have been able to work or attend school so just go on how it's all improving. My mother worried about me so much - I'm 55!! -
I consider myself very lucky that I have always improved except for when I dropped the prednisoline by 5mgs and my sight started to go. I've only had one cold in the 18 months and have recently had a mild case of shingles.
Good luck with it all. I learnt what convalsecing meant. I had never given it much thought but realise the value of doing it well. explain the concept to your son. It's not used very often these days but is helpful because you see your progress and value the effort you have put in to getting well.
Regards and love to your family
Carol Lakes Entrance Australia