I wanted a way to tell you about me... and to show you.
Hellooooooo, it's Tara! Welcome to my page.
A little about my journey with Lupus and Pulmonary Arterial Hypertension:
That's my Hickman catheter. It was placed this May, it'll be there until I die. They have a fabric-like piece that scar tissue grows into so that it becomes part of your flesh. By this time it's fully integrated into me, all the way straight into my heart.
That's also my MedicAlert tag. I have to wear it because of my conditions AND my meds.
You'll notice different dressings (bandages). Unfortunatelly I've been allergic to every adhesive I've encountered. I'm using a nice clear one now that's supposed to be hypo-allergenic, it still causes reactions though. You can see the redness but the blisters aren't pictured. Even paper tape causes me anaphlaxis. Anaphlaxis is a potentially fatal allergic reaction.
When I spent May '07 in the hospital @ UCLA I found out I have Pulmonary Arterial Hypertension. It caused a hole in my heart too. They call this "shunting." The right side of the heart is fragile and the excess pressure from the pulmonary system stretches it out and sometimes pops a hole through from right to left to alleviate the pressure.
I can't walk to the bathroom without getting winded and desaturating to 60. Under 90 damages organs including the brain. To know what PAH feels like. Imagine a plastic bag snuggly wrapped over your head. No matter how hard you try to breathe you just can't get enough oxygen.
While at UCLA I was given an option. Start Remodulin intravenously or cross my fingers that I would make it to see this fall. I chose Remodulin.
The Remodulin has to be mixed fresh every-other-day. It is such a specialized drug that only trained people can mix it. Not my doctors here in town, not the pharmacists either. I did the training while I was still in the hospital. So I have to maintain my own pharmacy of sorts.
The drug costs $10- $20K per month. It is harder on the body than chemo. It's purpose is to go in and remodel the vascular stucture of the lungs. So that the vascular system is more pliable and permiable to oxygenate the blood. Cost and pain are nothing. I went from maybe 6 months to live, to probably well into my eighties.
The medicine is so concentrated and powerful that if they "flushed" the line with saline it has enough to put me in a coma or even kill me (just in the line). I'm currently on 49 nanograms. But it's looking more like I'll go up to somewhere near 100 nanograms per kilograms per minute. It's a long climb to the top. I believe I will someday get there. Also a specific med for PH that I take is Tracleer. Cost is about $65 per pill (twice per day) . A 30 day supply costs $3,900. And the recipient must do monthly liver work ups and pregnancy tests. This is because Tracleer can have bad reactions for some.
Daily Oral meds. Pretty self explanatory. But with each ailment comes new meds. With each med comes the chance of side effects. Or (a few times I've had) potentially fatal allergies. For 5 years I was on chemotherapy to suppress my overactive immune system. I had to stop it because of possible pulmonary complications. I cannot take plaquenil or cellcept which are common choices for Lupus medications. My last attempt at a Lupus medication was Imuran. It is a good med but I am too sensitive to it. It is meant to suppress my immune system but it made my white blood cell counts to drop to critical levels. I was pancytopenic, low red, white and platelets, so had to stop. I am hoping to ty a new med next week. Something has to work eventually.
I tried Cellcept 3 times because of kidneys being attacked. But each time I had bad reactions indicating an allergy to it. I couldn't swallow or feel my legs and arms. It was scary but it cleared, no harm no fowl. Plaquenil was one of the first meds I was started on. Usually a great asset to a Lupus patients regimine. However I declined fairly rapidly. My brain swelled and caused me to go deaf. I then had many many seizures and was hospitalized for 2 weeks. I couldn't drive for almost a year after that to make sure I wouldn't have more seizures. Oh almost forgot I was allergic to the first seizure med, dilantin, they put me on. I itched everywhere so desperately, my skin filled with bumps. I was told next stage was my skin falling off. LOL Thank god we stopped the med before much of that ( I did have a few raw patches).
Pretty common in Lupies is anemia. Some of us are lucky enough to get Procrit for it. One of the reasons people are often denied this med is that tiny vial, just 1ml of fluid, costs $500. This for me can be weekly. I do the injections myself. For convenience sake. First few times I was proud but that wore off under the reality that it is just another thing I do to live. This prepared me well for giving myself daily Lovenox injections. Lovenox is an anticoagulant (alot of people say blood thinner). When I have to stop coumadin for anyreason (surgeries, dental cleaning etc) I start back up with Lovenox as it is fast acting and sort of a kick start.
I've had shingles in the same place 3 times now. I have small hands and they swell to over 3 times their normal size. These episodes left me with PHN- nerve damage. On good days it feels like someone's standing on my hand. On bad days I feel an ice pick stabbing through. Once a person has had chicken pox that virus lives in the nervous sytem for the rest of their life. Most people will not have to battle the virus again (but you know I'm not most people LOL). The meds I'm on are designed to supress the immunne system. And so the herpes zoster virus (chicken pox) can re-emerge. Over and over. I know the beginning signs and so hopefully in the future I can stop it with taking anti-virals before it becomes blistery.
I've been on oxygen since the holidays 2006. I need 5litres... that's pretty high, as most people are on 1 or 2. I had a constant nosebleed from January to May. The air that it forces into your sinuses dries and cracks them, so you bleed.
I bleed more. I'm thrombocytopenic(low platelets) and have to take the anticoagulants on top of that. I have APS anitphospolipid syndrom. It makes what platelets I do have randomly clot. Vitamin K aides in this clotting process. So I have to be acutely aware of my nutritional intake. Too much leafy greens can kill me. This is a bummer as I do really like broccoli!
I've had clots form and do damage already, so we know my APS is dangerous. I had a round with Pulmonary Emboli. Little clots travel and embed in the lungs, blocking proper function. Judging from the pain I thought I'd die. I was rushed to the emergency room and spent a week at the hospital. They got that part sorted out.
Not sure exactly when it occured. But MRIs this year show I've had 3 strokes. I'd assumed my memory issues were Lupus brain fog or lack of oxygen. Never imagined that I'd have 3 strokes in my twenties! I can't remember names very well. My brother's middle names included. It seems a given to be able to remember the street name a block over, but for me it's gone. I'm learning to adapt. I carry my memo pad with me and try to take notes.
You'll hear alot about malar rash or butterfly rash. It shows up in different ways at different times. Mine presents looking alot like acne (oh boy what fun). But when I'm not flaring my skin is very clear. There are also a bunch of skin Lupus issues. I also get discoid and subcutaneous and lupus papules. And from years of high doses of corticosteroids I've gained weight. Don't forget those chipmunk cheeks! Sometimes I feel like a cartoon, the cheeks are ridculous and sort of surreal. I've been on steroids for almost years. Most people will gain weight, grow facial hair, get "moon faced" and a buffalo hump. I'm lucky I didn't get all of those. I've also managed to fight the weight and have dropped the majority of it even while continuing steroids. The high doses of corticosteroids can cause Cushings disease. But if you stop them suddenly your body can go into shock and shut down. Lack of cortisone is Addison's disease. It's very painful as those hormones regulate pain too.
My great house in Southern California-- yep that palm tree is mine! I can't enjoy this view very often. If I had the energy to make it out of my house I couldn't make it across the street anyway. And to boot I'm allergic to UV rays. Without my sunscreen and long sleeved clothes and pants I'd take 10 minutes before passing out and getting rushed to the hospital.
I like to dress my oxygen tanks in fishnet stockings. LOL I'm 29 and hate dragging around a granny tank. Those suckers are heavy! If a place has stairs I have to carry it up and down them. If I want to go anywhere I have to be able to lift it into the car to go with me. And I have to know how long I'll be gone so I know how many tanks I need. They don't last long on 5 litres.
The handsom beast above is my concentrator. It takes room air and seperates the oxygen to send through the tube for me to breathe. I have a 50 foot line so that I can get around the house. The bottle thing on there has water to humidify the oxygen. Otherwise the dry air can crack your sinuses. I've had way too many nose bleeds to count. But you learn some tips and tricks to help minimize this as much as possible.
PH patients have to monitor their stats closely. We have to check our weight daily to make sure we aren't retaining excess water. If we are retaining alot of us have to take strong diuretics. We also must keep our blood pressure in line, so we check it at least daily. The thing on my finger is a pulse ox. It measures how well you are oxygenating. Unfortunatelly when I took the picture I was only oxygenating at 86 (on 5 litres). My personal goal is to keep above 90. I check this often and even carry the pulse ox in my purse when I go out.
My fuzzy kids. Definately can't have children of my own... but... They give such unconditional love. And yeah they're alot of work too.
Pain and fatigue were bad enough. Years ago, I asked" How low does low go?" There's a looooong way down to the botttom. And it might seem silly, but with all of this I haven't touched bottom. You probably wonder is it worth living like this. Yeah, actually it is. I have less than no energy, I accidentally lost 7 pounds in 36hours. I feel like vomitting and I have to get up early because my husband commutes.
We as humans aren't designed physically or emotionally to handle all of this. That's where support groups really do their work. Being able to redefine your new normal is important. Without contact with others in similar situations we could so easily slip through the cracks and get lost in the mix. It's also comforting to know that our struggles may someday help another person.
I'd love to help many more people. I'd love to donate my organs to see that others live on. But my organs aren't suitable for transplant. My immune system would attack the person who recieved tham and most likely cause damage and possibly death. So, I've asked my body to be donated to research. I hope doctors can train or see what these diseases do on the inside with my remains. Maybe my legacy will be one person with one less pain.
I'd like to urge anyone who qualifies, please consider donating your organs to those who need them. You have enjoyed a good and healthy life. Please give the same gift of a good life with a chronic patient. Your unbelieveable generosity will be celebrated each day by the recipient and all people who that person touches.
Lupus research isn't just valuable to Lupies. The information gained through Lupus research has generated so much information about the human immune system. This knowledge has contributed to the swift production of medicines to fight HIV. Understanding the immune system will benefit us all someday. If you run across a way you can help Lupus awareness I'd like to encourage you to do so. It's not just money for research. It's offering your conference room for support groups. It's volunteering at a fundraiser. It's volunteering you shop to print flyers at cost. It's driving your sick neighbor to the market. It's about understanding and opening a door so more people can understand.
Same with all other autoimmune diseases. They are all devastating and rare, making it hard for people to find good connections. There are a number of rare lung diseases that could really use your help as well. Not just PH, like I have. But imagine the gift of bringing together patients and family and friends together. They need not just peer support but support from their communities as well. If you have access to reporters urge them to spotlight one of the local rare disease patients occasionally.
It can really bring the community together as well. In the Santa Maria area we have 2 girls with the same very rare disease, IFOP. The community has come together with auctions, raffles BBQs etc to benefit the research of IFOP. Our community has helped in raising the majority of independent funds. I'm glad to say research in this disease last year has found the genetic marker for the disease. As gene therapies advance we hold hope that there can be developed something to help and even reverse their debilitating disease. There is hope for all diseases. Given proper time funding research and understanding they can all benefit to some degree!
My progression has been very aggressive. It's different for each patient. I think it's important for people to know it's not just about being tired and achey. This unfortunately is the struggle for many chronic illness patients. Some succumb to the process of the disease. I know it doesn't have to be this way.