I guess you could say that it’s never a good thing when your Dr. calls you at home over Labor Day week-end, and begins his sentence with ‘Carol, I’m afraid I’ve got really bad news”.  That is what my Monday was like.  It has gotten better since then.

I had a brand new ‘thingy’ removed from my shin the week before.   After I noticed that it had just popped up out of nowhere, I showed it to family members- they all said it looks like nothing.   I watched it for a couple of days, as it grew rather quickly, was uneven with ragged edges.   I called my Dermatologist and got right in (I had a pre-cancerous lesion removed from my lip over New Year’s).   He took a quick look and said- “It looks like nothing”.   Then, he looked under his magical magnifying monocle, and said, it looks kind of unusual.

We’re going to remove it and get a biopsy.  And, they did.

And, it came back as malignant melanoma (Is that redundant)?

When I hung up with Dr- I immediately went on-line to trusted sources to see what I could learn.   I know the best and the worst now.  I spent about 24 hours stressed about this.

Then, I woke up on Wednesday morning, and I knew that I was prepared for whatever the outcome would be.   I am having a larger HUNK of skin, tissue removed bright and early Monday morning.

That will also get biopsied.  I personally feel that I was very vigilant and found it early enough that will be the end of it for now.    For now.

Cancer has gotten it’s hold on me, I’m nearly 61, and I’ve already lost my Dad and my sister to Cancer.   The C word- I never thought I would have to say it about myself.   You could say- OH- It’s just skin cancer- but do you realize that melanoma is the deadliest of all skin cancers?   The most rare too.   Only 2% of all skin cancers are melanoma.  And, they easily  metastasize to lymph nodes and organs. 

We also already know that the incidence of getting cancer is greatly increased by having PIDD.   I’ve heard lots of numbers thrown around - but since they don’t agree- I won’t quote any here.   But, the other thing about PIDD is that we mount a very poor response to fighting invaders= and I guess you could call Cancer – the DEARTH INVADER! 

So, I’m trying to get my house in order this week-end (literally and figuratively) as I prepare for the surgery Monday am.

Why am I doing this- well it beats sitting around and sweating it out.  Plus, being a Type A- it feels better this way.

I’m writing this so that you will also be more vigilant about skin spots- make sure to get them checked.  And, never let something you are suspicious of fester.   Get in to your Dr ASAP.

Emily was profiled on my blog, under the patient profiles section about 2 years ago.   She has just finished her freshman year of college and is a pre-med major.   She uses Vivaglobin and talks about doing Sub Q here.

Emily is also the daughter of our Director of Consumer Advocacy, Carol Ernst.   They are a remarkable duo.

This Q & A was originally written for CSL Behring clinicians who are teaching patients how to use Vivaglobin.

If you are trying to decide whether or not to switch from IVig to SCig (Sub Q) this interview with Emily might be helpful to you:

You were diagnosed with primary immunodeficiency (PI) as a toddler. What is your earliest memory of your Ig therapy?
My first coherent memory was when I was 3 or 4, sitting behind the recliner, screaming at the nurse that I wasn’t going to get my IV. I assume, at some point, someone pulled me out from behind the chair to infuse my therapy.

What was most upsetting to you about your IVIg?
It was probably a combination of the needles and the headaches.

When you were 10, you started Vivaglobin^®. What do you remember about that change in your Ig therapy?
I remember not wanting to do it. My parents entered me into the clinical study. If it was my decision, I wouldn’t have done it. But it was my parent’s decision at the time, and the right one.

Were you afraid of the needle?
I wasn’t afraid of the needle. I was really nervous about getting the injection in my side rather than the IV. It wasn’t normal to me.

At first I got the injections in the stomach in the front where I had very little subcutaneous tissue. Eventually we moved it to the side, where I have a little more sub-q tissue. That was better.

How have your thoughts or feelings about your Vivaglobin^® therapy shifted over the years?
I like it a whole lot better now. I’m so glad that my mom managed to meet Dr. Berger and to get me involved in the study. If it weren’t for Vivaglobin^®, I don’t know how I would have been able to be so far away from home, at college, living in a dorm.

Why do you like it better?
With IV, I still got sick a lot. I am so much healthier now. With Vivaglobin^®, I’ve missed only 1 day of college. In high school I probably missed 3-4 days of school a year. Back when I was on IV, I would miss 25-30 days a year.

When did your feelings toward Vivaglobin^® become more positive?
I was reluctant for probably a year or two. I refused to learn to do it myself. Finally, about 2 years later, I really wanted to go to overnight summer camp for 2 weeks. My parents said I could go to camp if I took complete responsibility for infusing my own therapy. I was probably about 13.

When I started doing it myself, that helped a lot. We switched needle sets which also helped. Originally it was this spring-loaded machine that shoots into you. The plastic wing set, I’ve been using for 3-4 years, it just pushes the needle in. The spring thing hurt more than the needle actually going in.

Tell me about learning to self-infuse your Vivaglobin^® therapy.
It’s really not that difficult. You put the needle on the syringe. Draw up the medication, and connect the tubing set. You prime it, and then you just inject it.

When I first started, I drew it up first, and then my mom would inject me. Eventually, I would do it, and my mom and dad would be around. They don’t even need to be around now.

What advice would you give to nurses who are teaching patients how to self-administer Vivaglobin^®?
It’s definitely not a process you can rush. For me personally, my mom was a nurse and my dad was a doctor. That benefited us a whole lot. If they don’t have that medical background, it can be a completely foreign process to them. It just can’t be rushed.

Have you had any problems with your therapy?
Sometimes I have a little site swelling right afterward. It’s not painful. And it goes away really fast. It’s not really a problem. Sometimes there’s redness from the tape. I can’t really come up with any real issues.

You’re a busy college student, how do you find time to work your therapy into your life?
It’s not like I have to work anything in. It takes about 1 to 1-1/2 hours. I’ll take the medication out of the refrigerator. Go to class. Come back. Just draw it up. Put it in, and do homework with it in. Sometimes I go to the cafeteria with it in.

I haven’t gone to class with it in. I just choose not to, because I’d have to carry my sharps container. Also, I get uncomfortable and a little stiff to sit with the needle in for a long time. The medicine absorbs better if I move around. If I’m just sitting, it absorbs more slowly. It gets a little stiff, and it’s sensitive to the touch.

How do you keep track of which days you’re supposed to infuse?
I write it down on my school assignment calendar. It’s really a bad idea to postpone it.

I just make sure I have time. If it’s on a Saturday, I just make sure I do it before my friends go out. I plan ahead.

Half my friends have been around when I do it. I don’t really care. I’m like, whatever.

What tips would you offer other patients about staying adherent with their therapy regimen?
Use a calendar or a log to keep a record. Don’t let it stop your life. Some people worry that it will take up time. Maybe it’s because I’m younger and more open-minded, but I’m going to do what I want. I’m not going for a jog with it in. But I do stuff. I hang out, go to meetings, walk to campus, go down to a friend’s dorm room.

What else do you think would be important for Vivaglobin^® nurses to know?
Patients are definitely going to be nervous — no matter how old they are. You probably need to convince them to do a few infusions. If they stick with it, they’ll probably find they’re healthier with Vivaglobin^®. You can run to the store or go to eat. With IV, you ARE stuck. You’re attached to this enormous pump and stuck in the room.

I think nurses should convince patients to stay with it long enough to see how it benefits them.

If the nurses reading this article could only remember one thing we talked about, what would you think is most important for them to know?
Probably the fact that Vivaglobin^® is a better choice in the long run. And that patients should stick with it, because it’s less intrusive in their lives.

Emily’s Advice includes:

• Patients are definitely going to be nervous — no matter how old they are.
• Learning self-administration techniques is not a process you can rush.
• Encourage patients to stick with their therapy long enough so they can see its benefits.
• Use a record or log to plan ahead and keep track of when therapy is due.
• Sitting still in the same position during an infusion can cause stiffness or tenderness at the infusion site.
• For improved comfort, infuse into a site where patients have more subcutaneous tissue.

We all get fed up with having a chronic disease.   It wears us out, and it grows old after a while.

How many times can we tell our family and friends and co-workers NO?

This is a very humorous take on this topic written by a PIDD patient and friend of mine, Shawne.

I hope you enjoy it as much as I did.

                                     I want a divorce!

Listen, this immune deficiency thing was fun for a while. I mean I’d been looking for so long, years and years. I had spent hours searching the Internet, reading profiles, talking to important smart people who seemed like they might be able help me find it. I even flew all the way to Rochester, Minnesota just because I thought maybe I’d meet it there. But even in Rochester, Minnesota, I didn’t find my immune deficiency.

I’d nearly given up hope of ever finding anything that was right for me, when that nice doctor in Boston finally introduced me to my immune deficiency. I was so happy. I mean some people look their whole lives and die before they every find something like my immune deficiency. I knew how lucky I was.

So for a while, it was great. Like I could finally relax now that I’d found it. It went to bed with me every night and it was always still there when I woke up in the morning. It even came to work with me. And if I didn’t feel up to doing anything much, it was perfectly content to hang out on the couch and watch bad movies with me.  With my immune deficiency, I finally felt heard after all those years of trying to get someone to listen. Especially doctors. I’d been trying so hard for so long to figure out a way to get doctors to listen to me and it turned out the immune deficiency was pretty good at helping me with that. It spoke up for me, when I couldn’t. Also, it introduced me to a lot of its other good friends, which I’m grateful for.

But here’s the thing…it’s starting to smother me. I mean all this closeness; don’t you think it’s just a little too much? I’m sick of the way it leaves my sheets all wet with sweat at night, and it leaves little balls of kleenex everywhere. It doesn’t seem to care if the house is a disaster and if the laundry hasn’t been done in weeks. In fact, I think it prefers things that way. It reliably attacks me every three months, dragging me to one of those doctors it seems to be so fond of. I’m beginning to find that experience to be a little boring. At night sometimes, it stays so close I can’t even breathe. Literally, I have to take a shower right away in the morning just to get it off my chest and get a little breathing room. Half the time, it follows me into the bathroom. Speaking of bathrooms, it even wants to control what I eat and, if I do eat something it thinks I shouldn’t, it goes out of its way to make me pay for it.

It distracts me at work. And it’s clear it doesn’t want me spending time with anyone else, because just about every time I make a plan, my immune deficiency finds a way to try to force me to stay home. I always go anyway; I refuse to give in to my immune deficiency! But then my immune deficiency insists on going with me and doing everything it can to mess up my good time anyway. I really fear it’s trying to convince me I should just stay home with it and watch bad movies all day. But see, that life may be fine for the immune deficiency, but it isn’t fine for me. I mean this business of controlling what I eat, keeping me from having fun with anyone else, attacking my body and forcing me to stick needles in myself - doesn’t that sound a little like a domestic violence situation?

So, I’ve decided to file for a divorce from my immune deficiency. I know it’ll be hard. It may try to attack me and it may do everything in its power to stop me from leaving it. I’m going to need a really really good lawyer. You see, I just don’t want to be married to it anymore. Maybe I’ll call that nice doctor in Boston who originally introduced me to my immune deficiency. Maybe he knows a good lawyer who can help me with my divorce.

It’s going to be hard some days to tell the patient from the caregiver.   I had gotten so used to being the patient, and my husband had been the caregiver, that I had not realized how many things- chores, activities, etc he had taken over for me.

Now, 2 weeks after he came home from the hospital, and is still learning his new ‘dance’, I realize how much I have to step up to the plate- even while exhausted.

He needs so much rest, and yet- the daily grind of keeping up a home must go on.   That leaves me doing the grocery shopping (which he had taken over), the cleaning, the laundry, the meals and clean-up, etc.   I had really gotten spoiled over the past few years.   He would not let me do anything if I got fatigued, as he would worry that I would end up sick.

Now, I’m very fatigued, and yet, I’ve found a way to carry on.

Is it adrenal that is keeping me going?   Am I a lot stronger than I realized?   Have I learned to care for myself, and stay healthy so well, that now, when it’s my turn to bat- I can easily step up to the plate?

I hope that all PIDD patients reading this, will make sure to take very good care of yourselves- eat right, exercise, rest, sleep hard and always stay compliant with your meds, as some day- you will also be asked to step up to the plate in some fashion- and it’s best to be prepared.

It’s actually a very good thing that I stayed in Girl Scouts for so many years – I learned the art of always being prepared.

It was our motto then – and it should be our motto now as well.

My life was turned upside down nearly 3 weeks ago.  On Super Bowl Sunday, my husband began what is known as a stroke cycle.

He started with some unexplained loss of balance, and lightheadedness.   He ate something, and appeared to be just fine.

The next morning, he went to work as usual, but felt very fatigued.   During his Monday morning sales meeting, he noticed difficulty taking notes. He phoned his Dr, who sent him to the ER.   We were there until 10 pm Monday evening, when they sent us home with a DX of a TIA.

Early Tuesday am, he woke and fell flat on his face and could not speak.   I called 911 and they were on the scene within 1 minute!!

When Dave got to hospital and had his MRI-he was in full stroke mode.   They admitted him to the critical stroke area- and watched him closely.    His stroke actually continued into the next morning, when he lost the motor control of his right arm and strength in his right hand.  

Luckily, by Thursday, he had stabilized, and was moved to rehab.   He has been there ever since.   He is doing incredibly well with rehab so far.

I’ve been staying at the hospital on a cot next to his bed.  Anyone who knows anything about PIDD patients, knows that I have no business being in a hospital.   Of course, the second week, I woke up during the night with fever, throwing up, shivering like crazy and sicker than a dog.   The nurses were in the room all night taking care of ME!!   I barely had the strength to walk through the hospital to get to my car to go home to sleep this one off.   I was back in the following evening- even though I’ve not fully recovered.

Dave comes home from hospital on Friday afternoon, and I would love to be able to sleep for 3 days straight- but now comes the really challenging part.   How will a patient have the energy to become the caregiver and take care of the patient.

I have this feeling we will be taking turns looking out for each other.

Actually, right this minute- I just have no idea how this will all play out- but I also have the sense we will learn a new dance, have different music and and a different beat.   Isn’t this what life is all about anyway?  It’s not supposed to be easy.

I will keep you posted as to how this new chapter of our lives evolves.

CONGRATULATIONS on your success in the People’s Health Blogger Awards Competition. Your readers have spoken, and you’ve been chosen as the Best Overall winner!

The competition was a huge success, with hundreds of the best health bloggers competing and thousands of votes cast. The competition during the last few weeks was intense, but in the end, your blog www.biorx.net/carolsblog/ was ranked as the best. This award is a recognition by your readers for the contribution you are making through your blog, so you should feel very proud of your achievement! As the Best Overall Winner, your profile now appears prominently on the top of the People’s Health Blogger award page at http://www.wellsphere.com/healthBloggerAwards.s , and a special badge now appears next to your name in all of your article listings on Wellsphere. Check out your profile page at http://www.wellsphere.com/a-profile/113005 to see your award displayed on your profile.

We have prepared your Best Overall Winner award badge for you, so you can display your achievement to your readers on your blog. You should feel proud to display this award on your blog; you deserve it.

THANK YOU TO EVERYONE WHO VOTED FOR MY BLOG.

WELLsphere has included my Blog about PIDD in their contest for the top 20 blogs about health issues in the country.

I would really like to win since I devote most of my time and life to PIDD- either living with it, or helping others live with it.

I would really appreciate a vote from you.

The deadline is January 31st.

Please go to the site and vote for my blog.

http://www.wellsphere.com/my-profile/113005

Thanks

Carol

My blog has been entered in a contest for the best health bloggers.

I would sure appreciate your vote.

Please go to

http://www.wellsphere.com/my-profile/113005

THANK YOU SO MUCH

Voting ends January 31st, 2009.

Carol

If you read my previous blog, you may know that I was waiting to get the results of a biopsy.   That news came in shortly before noon on Wednesday, Jan 5th.   My New Year officially began as soon as I hung up the phone with the news that my results were negative.   So, HOORAY FOR THE NEW YEAR finally!                                                   

I wanted a fresh start.   I wanted to erase 2008 (for many reasons).  I wanted to begin anew my promise to myself to live healthier, exercise more, visit family more often, work harder, study, and NOT GET SICK.  That is the plan, along with may others in 2009.  I hope, I pray that we all get our wish.

We need a better economy, we need a better leader, we need better healthcare – and the list goes on.

It’s hard to be actively involved in anything if you are laying on the bed feeling like crap, or down with pain, or anything else than can happen to someone with chronic illness.

The pledge to myself is one that many of us can make.

Eat healthier

EXERCISE – even if all you can do is walk for 5 minutes

Sleep more

Stay compliant with meds

Embrace a spiritual life

Keep family and friends close

PLAY

Pay attention to what your body is telling you.

So, now following my news of January 5th, I wish all of you a very Happy and HEALTHY New Year – and wish for you what I wish for myself – only the best.

I am aware that many of us are glad that 2008 is over for different reasons.   Many are tied to financial downturns.

Some are political.   Some reasons have to do with job loss and job security.   In the Land of PIDD, many of us are glad due to health reasons.

I AM ONE OF THOSE PEOPLE.

I felt so good in 2007, that I just assumed it was going to last forever.   Nothing lasts forever, and since I turned 60 this year, I should have learned that lesson by now.

Last January started out great.   I was in South Carolina on biz, and then visited my Mom and sister.   But, alas, I flew home to a very sick husband who was happy to share.   His germs that is.

Within one week, I had the same nasty virus that he and much of the country had.  I was sick for 3 weeks and thought it was the end of it.   I was off to Phoenix on biz, and while there, ended up with pneumonia, collapsed lung, pleurisy and bronchitis.

And, it came back 2 more times – finally ending in May.

AH- SUMMER.   It was great.  I felt healthy, energetic, happy and sunny.  I played, I exercised, and enjoyed life and once again, thought it would never end (WILL I EVER LEARN)??

I had my 6 month check-up at retinal clinic only to learn I had major retinal damage.   NO EXPLANATION WHY.   I went to Chicago to see an expert and ended up getting tested for cancer and autoimmunity (AGAIN). 

Tests for cancer came back the Monday before Christmas negative.  

AHHHH- BIG OLE SIGH OF RELIEF.  

Tuesday before New Year, on dental visit, learned I had very suspicious looking sore on lip that might be CANCER (AGAIN).

I had a lip biopsy on Friday and now look a bit like Count Dracula (forget the picture of me on the blog- this does not resemble how I look today)!   Dr sliced some of my lip away- and I was forced to drink milkshakes for dinner.  SOME JOY in this event at least – except that it’s only 7 degrees outside.

And, now the WAIT for results.

The thing is- I’ve added several new autoimmune disorders this year- I think the number is either 8 or 10- and this could be one more if it’s not cancer.

So much for starting the New Year with a clean slate.

I wrote down all of the lousy things that personally touched my life is 08 and mentally THREW THEM IN THE FIRE as the ball dropped on New Year’s Eve.   But, with that exercise, a new, better, improved 09 was to come up out of the flames.

We shall see.

I just may have to start my New Year after the Dr calls to tell me that I do NOT have cancer.   If he calls with any other news- all bets are off.

Here’s to a great year for my PIDD peers- hope you have good health- great doctors, a supportive network, no insurance hassles, and a smile on your face.