Money

Ah money. Something that we need and most times never seem to have enough. Money is so vital in our society that many bands have written songs about it. Most known Money songs include the ones by Pink Floyd, ABBA and even the Beatles. I'm not one to complain much about money because I'm blessed beyond words with my husband, kids, family, friends, home etc. But I want those of you who are going through a stem cell transplant to be aware that there is a significant cost involved with keeping a decent quality of life post transplant.

I am currently 3 years and 1 month post allo SCT for relapsed AML.  I am one of the lucky ones with very few cGVHD complications. Here is what I have going on: extremely dry eyes, vaginal adhesions, minor GI issues, dry mouth, brittle nails and alopecia (my hair on my head never returned). I also don't sweat much or at all and my thyroid is not functioning well. For all of this, I am thankful because I know of people at my stage that are on lists for lung or liver transplants or have such horrendous GI issues that they can barely leave their house.  So please understand that this post is not for pity or seeking financial resources/help, it is an informational post for those who are unaware that life isn't back to normal when you are post transplant.

Here is a typical month of costs for my minor GVHD issues:
Copay for dr: $30
Prescriptions thru CVS: $69.09
3 month supply of thyroid med (Nature Throid March-May): $40/month
Bioidentical Hormone cream: $65
Contact solutions: $75 (preservative free saline, drops, conditioning solution)
OTC medications: $30 (acid reducers, vitamins, omega 3s)
Personal care items: $45 (sunscreen, chap stick, sanitary napkins,  various creams and ointments)
Wig supplies: averages to about $10 a month
Wigs $580 this year so average to $48 a month
Scleral Contacts: $600 a year so average to $ 50 a month
GRAND TOTAL:  $462.09

That's not including the labs and phlebotomy or various specialist or random hospital stays because I've met out of pocket limits so I don't know what those costs are without going through files and since its a beautiful day outside as I type this on the screen porch, I just don't want to go through files. You get the point though that life is expensive.  I believe my husband mentioned that he just paid my recent hospital bills and they were around $500.

These costs are not optional. They are necessary to have a decent quality of life. Sure, I could go without a wig. I could go without contacts but I wouldn't be able to drive or go out in public without feeling like everyone is looking at me and pitying me.

So please, if you are a family member or friend of a transplant survivor, understand that they have a financial burden that is necessary to keep them living life to their fullest ability. You may not see it or they may not discuss it, but it is there. Please be respectful of that. And if you or your loved one are just starting on this adventure, please don't assume that the costs end when you've finished treatment.

I am fortunate to have a husband who has a job that pays enough for us to make ends meet. I shop sales, use coupons, we don't spend needlessly and (usually) live simply. I am also on Disability through SSA which helps a great deal. I hope to go back to work one day but I am still on immunosuppresants and cannot go back to working in a school setting.

As you plan for your future financially, make sure you consider the cost of quality of life expenses. I'm only 38 years old and these expenses will probably only grow as I age. Maybe one of my kids will land a job as a professional athlete or superstar actor and they can support me!! If not, we will be fine because we are aware of these costs and are planning accordingly. I hope you do the same.

Heartache Tonight

Back in the late '70's, The Eagles came out with the song "Heartache Tonight" that reached No. 1 on the Billboard charts. While I've never had a song reach anything on any chart, I sure did have a heartache one night. No, my husband didn't break my heart and my kids didn't break it either although they may break my patience almost every single day! While The Eagles sang of emotional heartache, I had physical heart ache.

April 3rd was a cloudy day and I needed to exercise so I jumped on the elliptical and pushed myself to get through an intensive aerobic workout. My jeans were fitting a bit tight after months of Christmas and Valentines and birthday celebrations and it was time to get back to regular exercise. I finished my workout and felt great! That evening, I felt a pain between my shoulder blades in my back. It was a gnawing pain and I assumed I overdid on the elliptical and pulled something. I went to bed that night hoping it would subside and be better in the morning. I awoke around 3am with intense pain in my upper back and minor pain in my chest making it difficult to take a deep breath. I got up, took two Advil and went back to bed still thinking I pulled something.  By morning, it was worse still and I decided I better go see my dr for something to help my "pulled muscle".

I went to see my GP and explained my elliptical workout and told her I assumed I was out of shape and over exerted myself.  The weird part though was that it hurt much worse when I laid down or changed positions from sitting to standing or vice versa. She said I should get some tests done so off I went to the outpatient center. There I had labs drawn, two EKG's, an ECHO and a CT of my chest.

Labs were fine. Whew, no relapse. CT showed slight opacity in my left lung which could be minor pneumonia or cGVHD.  The big issue was my blood pressure was very high at 156/94 and my pulse was racing at 113. The first EKG they did as I laid flat on my back and the pain was almost unbearable. I could hardly breath and certainly wasn't relaxed. That EKG showed that I was having a heart attack. Thankfully, the technician ran upstairs to the Cardiologist's office and showed him and he told her to do it again but have me sit up. When we did that, the pain was less intense and the EKG showed pericarditis. It meant that the lining around my heart was inflamed.

This landed me in the hospital overnight for observation and a large dose of antibiotics "just in case it was bacterial". Turns out it was either viral or another cGVHD symptom. I left the hospital with some meds for my blood pressure (which I'm now off of) and just minor lingering pain. I had my follow up with the cardiologist and he released me "unless I need him again". My transplant doctor wasn't overly concerned and said it was likely viral and a "one and done" experience but it could be cGVHD and may reoccur. But at least now I know what it is and will get into doctor promptly instead of taking Advil at 2am.