Value of Life vs Medical Costs

I'm drinking Numi's Gunpowder Green Tea with Vital Protein's Coconut Collagen Creamer and Redmond Real Salt and doing some reflecting before heading to my post-operation appointment with my gynecologist.

What is the monetary value of quality of life for a person with chronic illness who lives in a first world country with access to excellent doctors? Is it worth paying $14,000 for a medical surgery that might give a ton of pain relief, may result in fewer sick days at work, possibly improve fertility, and has potential to make a person feel human again? $14,000 could buy a year of college, a good reliable car for the long-term, a down payment on a small starter home, or a new roof for your home that will last long-term. What if I told you this surgery might only benefit the person for a couple of years at a time? Is short term quality of life (that isn't guaranteed) worth $14,000, when that money could buy long term services or possessions that also give quality of life?

Yes, my laprascopic surgery for endometriosis and my cardiology visit added up to $14,000. That's before my uninsured discount and my cost-sharing program benefits. My next step, after I wake up and am thinking clearly enough, is to make some phone calls about this bill.

In 2 years I can give an answer to this question, because I've been told people with endometriosis can need surgery as often as every 2 years. It's too soon for me to say if it's benefited me at all yet, given the fact that I'm still healing and my period hasn't yet come. The problem is, I wasn't aware that I was gambling with this much money when I agreed to the surgery. I was told that surgery was around $2,000. That turned out to be true. What I wasn't told was that I would pay $750 for each of the 3 anesthesia treatments I needed during the surgery, $7,000 just to be in the operating room, and lots of other charges for the staff that helped me in different parts of the hospital. If I dug deeper I'm sure I'll find the charges for the multiple IVs I needed, the time I spent in the recovery room, etc. Had I known the cost before surgery, would I have opted to do it? Probably, yes. It's a gamble, a bigger one than I anticipated, but I believe one worth taking.

The older I get, the less confident I am. Endometriosis has definitely been holding me back from living my life. I didn't want to apply for certain jobs because I knew I couldn't get away with calling in sick for my period in that position. I have had to fight some bosses over my needs around my period for years, and this has lost me the chance to get scheduled for better shifts or in better positions. And due to all of my health issues, I've never been able to focus on a career. I'm 30 with a college degree and I'm still doing shift work. It's not below me. I have a lot of respect for us shift workers. I'm paid well, I like my job, I like my co-workers and boss. I'm not complaining. But if not for endometriosis and my other health issues, would I have a career going by now? And given the fact that I don't make a salary, am I worth a $14,000 surgery?

I received my GED at age 16, married at age 19, and graduated college at 20. I was set up so well for a life with a good career and children. 10 years later, none of that has happened. My husband and I are happy together, but we're both very stressed by money, careers, health issues, and living within our needs. His career is very difficult because it's facing budget cuts at every turn, and his Master's degree isn't enough, but a doctorate doesn't guarantee a job. So am I worth a $14,000 surgery when we have these huge struggles? Would I be financially better off not getting medical treatment at all, and therefore not working? I could save money by just being disabled at home, not contributing to the work force. But I would be miserable. Is being miserable financially smarter, and could it lead my husband to more happiness if he didn't have to work as hard to afford me, someone who can't work much?

Don't misinterpret this post -

I'm not degrading myself. I'm not putting myself down. I believe I made the right choice. If I were evaluating another person in my situation, I would say that we each only get one life to live and all life is equal. Everyone deserves to live life in the healthiest way they can so that they can participate in life the most fully. I might have self esteem and confidence issues, but I know my value is the same as any other person. I carefully considered the pros and cons of this surgery over years. I've talked to countless people who have had it done. I've discussed with multiple doctors. It was a carefully made decision.

But what upsets me isn't that I have to spend this kind of my money for my health, it's that many people simply cannot afford the surgery or treatment and have no choice but to suffer. Why do I get to have the surgery to help me when others might suffer worse than me and can't have the surgery? I accept that the medial system is the way it is in the USA - I am all for improving it, but I can't afford the stress to worry about it. So I'm not. It simply is what it is, and until something can be done to improve it, I just accept what it is. I'm thankful for the good the medical system can do me, and my doctors and all the staff and nurses were excellent and I really appreciate all they did for me. But in the end, what makes me special?

Just some of my thoughts, but I hope my experience helps some of you make the right decision for you. After this Post-Op appointment I'll write about the surgery experience itself. 

Metaprolol Experience

In this post I explained that I was diagnosed with POTS and put on a beta blocker to manage it. I'll go into some detail on this post about what it did for me and to me.

I was prescribed Metoprolol Extended Release 25 mg. I was not allergic to any ingredients in this option, but the regular non-extended release version contained lactose. I don't know how a small amount of lactose in the pill would affect me, but I do not do well with dairy at all. The advantage of the extended release version is that I only take one pill a day, but the disadvantage is being unable to cut the pill in half if the dose is too high. I think I would have been better off with the regular version, taking a couple a day, because I think I would have responded better if I had been able to cut the pills in half and work my dosage up. In the end, however, my doctor and I decided it's not the right drug for me.

Beta Blockers lower your heart rate, so it made perfect sense to try it. What I didn't know at first was that it also lowers blood pressure. If you have low blood pressure then I'm warning you against Metoprolol.


I decided to take it at night since it makes me sleepy. The first night I took it I had vivid terrible nightmares. When I woke up I felt all the symptoms of low blood pressure: eye pressure, headache, weak, freezing cold, and out of breath. I took my blood pressure. I can't remember specifics, but I remember it was in the upper 80's over lower 50's. My heart rate wasn't any lower. Through the day my blood pressure ran low, but slowly improved until it was back to my average 100/60 in the evening.


The second night I didn't have the nightmares, but it started to make me feel slightly more depressed and darker than usual. I did wake up, again, with low blood pressure, and once again my heart rate wasn't any better. My toes were dark purple and icy most of the day. I was starting to feel even worse going from sitting or laying to standing. Normally I feel POTS symptoms about 50% of the time when I get up, but it was turning into 100% of the time with increased symptoms (mainly extra dizziness with bright light colors spinning around me longer than normal.)

By the 4th day my blood pressure wasn't quite as bad, but still around 92/55 most of the day (that was one measurement I have recorded.) My heart rate, however, was down to the 50's at rest. My average resting heart rate is 88, so that's a big drop for me. Upon standing it was going up to the 80's to 110 range. So even though my resting heart rate was lower, it didn't fix the POTS. By the 5th and 6th days the deep purple and ice cold in my toes had overtaken my feet and shins. By the 6th day my resting heart rate was back up into the 70's and 80's most of the time with a few periods of it being in the 50's. It wasn't consistent. That isn't so bad, but I was going into the 120's and 130's when standing up. The other issue is that my fibromyalgia was coming back in a big way. My leg muscles and shoulders were getting achy, tender, and felt like acid. I lost my ability to control the muscle pain.

I took it for 8 days total, and I never improved more than that. I asked my cardiologist his thoughts on this and he said it wasn't doing what it needed to, and the side effects were not worth it. So he told me to stop. He said I might be better off being untreated based on how I reacted to it. There are other options I could try, like Calcium Channel Blockers, but he didn't suggest it. He said because my heart itself isn't in danger and it's working well, I should be okay without treatment. I'm also not a fainter. If I were a fainter it might be important to try something else. But for me POTS is a cause of fatigue, pain, discomfort, and exercise intolerance. It's annoying and draining, but not damaging... we think. I'm not sure I'm ready to try the next thing anyway... exhausted from all the changes to my body!

Metoprolol was a teaching experience. Without it I feel fatigued all the time from being too revved up all the time. On it, I felt the same level of fatigue from not being able to rev up at all. It felt different. It might have been better for my body to be more calm on it, but it made it just as hard for me to function. I think I had less adrenaline to help me function while on it too.

So I'm going to do what I have been doing that seems to help: extra salt, electrolytes added in all water and tea I drink, licorice root as needed for low blood pressure, green tea as needed to cut down on fatigue (other sources of caffeine make me worse, but green tea does help), and going for walks as often as I can tolerate. I may want to try other prescriptions in the future, but I have a feeling I don't tolerate any prescriptions well due to my chemical sensitivities. I haven't had lucky on any so far for any condition...


Best part of getting off Metoprolol? My feet can feel the sun again and it feels good! They were so ice cold not even the sun would warm them up! They still turn purple from blood pooling, which is helped by elevating my feet, but not the dark purple and numbness that Metoprolol caused. 

Surgery and Diagnoses... It's Official!

In the past few weeks I was officially diagnosed with POTS, Inappropriate Sinus Tachycardia, ovarian cysts, and Endometriosis. It only took 5 years to get medical proof that I'm suffering, but I have it.

Here's the thing: POTS, Endometriosis, and Mast Cell Activation Disorder (MCAD) tend to go hand-in-hand. I haven't tried seeing a doctor for MCAD, but I have obvious chemical sensitivities that my Naturopathic Doctor helped me figure out. It could easily be MCAD - in fact, given the fact that I have POTS and Endo too, it probably is. I'm uncertain at this point in time if there's any point in me getting my chemical sensitivities diagnosed as MCAD by an MD.

The POTS diagnosis story:

If you follow my blog then you know that last December I saw Dr. Jeffery Cohen, a neurologist in New Hampshire to have some autonomic testing done to rule POTS out. The testing equipment broke, however, and he tried to cancel the appointment on me the day before my flight out there. He was willing to see me and look at other test results, at least. I went to cardiology clinic first and had a Tilt Table Test performed and an Echocardiogram. I did not faint on the tilt table, so the nurses said the test was negative, but Dr. Cohen pointed out that my heart rate did go up over 30 bpm (the requirement for POTS). He put me on a Zio Patch heart monitor for more information. He wouldn't diagnose me without more info, and after seeing the results of the Zio Patch he said I needed to see a cardiologist. My plan was to travel again to see a cardiologist familiar with POTS. My POTS support group said they didn't like Dr. Cohen because he wouldn't diagnose them, but honestly, I really liked Dr. Cohen. He gave me the tests I needed for an accurate assessment, and he was careful and thoughtful. I'm not upset that he wouldn't diagnose me, because I have better information for the diagnosis from someone else because of what he did for me.

I ended up finding a Cardiologist here in Bismarck that is familiar with POTS. I was really surprised by him, and I'm fairly certain he's the only cardiologist locally that is familiar with POTS in adults. I did a lot of digging and asking around last year and couldn't find a doctor who was familiar, and I think this doctor might be new since my asking around. Dr. Stephen Boateng, D.O. at Sanford in Bismarck. I don't think he's an expert on dysautonomia, but he is a very good and careful doctor. I really like him. Dr. Boateng was able to look at all my testing and see the evidence of POTS. He was concerned with my high heart rates on the Zio Patch results, particularly one spike I had. He diagnosed me and had me try a beta blocker: Metoprolol ER 25 mg. In short, it both worked and made me worse at the same time, so he took me off it. I plan to explain this in another post (or this one will get too bulky.)

What is POTS? This explains:





Endometriosis story:

Before seeing him, I went to a gynecologist at Sanford to discuss all my menstrual issues. 2 months of bleeding heavy every day, abnormally long PMS, extra pain... you get the idea. This wasn't the first time I've tried gynecology. Last time, about 4 years ago, I went to a very experienced doctor that I really liked, but she retired just a couple of months ago and I wasn't able to return to her. I initially saw her because I had a MRSA abscess on my vulva - and before you freak out and wonder what I was doing to get it there I can explain. A family member had MRSA who I was taking care of. I probably didn't wash up often enough. Anyway, she helped me recover from the abscess, but did other gynecological tests while I was seeing her. She told me I needed to consider a laprascopy to look for endometriosis, but warned me about the cost. My insurance would not cover the cost, so I decided against doing it. In retrospect, I really wish I had done it then instead of waiting until now. Why? Because I was worse back then and I would really like to know just how much worse I was - I'm fairly certain my naturopathic doctor and acupuncturists have helped me recover from most of my endometriosis before I had the surgery. But the fact of the matter is that I still have endometriosis, and it's officially diagnosed now.

This new gynecologist I saw first had me get an ultrasound, and it showed a few cysts on my ovaries where I have complained about pain. She said a laparoscopy was a very reasonable next step, and so I finally decided it was time to just have it done. I think I'll write a different post about the surgery itself, because I think I can share a lot that will help those of you considering having it done. Especially those of you with chemical sensitivities. I had problems,  I went through 3-4 IVs, but I believe it was worth it. My doctor said she found a lot of scar tissue, probably evidence of past endometriosis. I had endo in a few places that she was able to burn out of me, but I had some on my ovary (the one causing me pain) and she couldn't remove all of it without damaging the ovary. She said she burned it though. I had to have 3 incisions, and now for 2 weeks I've been nursing my belly and trying to let it heal. I'll share photos in the next post where I go into detail. My post-op is in a few days, and we'll discuss treatment options. Endometriosis is a life long illness that will have to be managed.

What is Endometriosis? This video explains:
https://www.youtube.com/watch?v=yM88T1R8HD4

(Blogger doesn't let me embed all videos on youtube - so I had to link to this one.)

Between recovering from surgery and going on a beta blocker for 8 days that made me worse in some ways, it's been a difficult time for me. Very difficult. And our finances are scary bad now. But I'm glad I went through all of this. I'm glad to have official diagnoses, and I'm glad to have this on my record in case I need more medical help - especially in emergency situations. No more arguing with doctors, they can just look at my records and see I'm not a psychopathic hypochondriac. That alone is worth everything I've been through!