Thursday, November 30, 2017

A Long (Detailed) Explanation and a Decision

This week has been... crazy. Forget the school stress (and the massive final project I had to turn in for the class from heck); I had a lot of big decisions to make regarding my health.

As many of you (who've been reading this blog for a while) now, I have had lower than normal platelets for years. We're talking a minimum of 8 years. It's never dipped under 100k (that we know of) which is the cut off for non-critical/emergency. For years, my doctors have fought with the hematologist to see me. For years, the hematologist canceled all my appointments saying I didn't have my numbers low enough to be seen by them. My doctor (whose residency was up in June and left) fought and fought until the hematologist agreed to see me starting in May.

For the past 6 months, it's been a whole lot of nothing; just "monitoring." My platelets had a steady decline in those 6 months, from around 123k to 105k. No explanation, other than a possible poor diet and not enough iron and protein in my diet. It's happened before. The hematologist ordered a bone marrow biopsy for next month, to rule out any bone marrow problems. Finally! It only took, what, 8+ years and a doctor who would not quit bugging him until he agreed to see me... and then another 6 months of my platelets falling. I knew it would hurt but I was determined to go with it because I want answers. It could be nothing; it could be that I have ITP and that there is no explanation for my platelets fluctuating. Still, I wanted everything ruled out. Now... the bone marrow biopsy isn't even happening. At least, not anytime soon.

Over the past week and a half, there was a lot of unraveling that happened with my doctors and the hematologist that forced me to make the tough decision to leave their care, go elsewhere, and start anew. Why would I do that, when I was so close to having the biopsy? Because I no longer trusted these doctors and if you can't trust them to take care of you and do what's in your best interest, you need to go elsewhere.

As I said, it started a week and a half ago. I went in to get my blood work results. My red blood count went down below normal for the first time in months, but the iron and everything else was normal, including my white blood count (which is rarely within normal range). My platelets also took that dip to 105k which prompted the bone marrow biopsy appointment. They were worried about my red blood count has dipped. I knew why it had dipped... but they weren't listening to me. That's when we started having problems.

I'll be completely honest with y'all: Mom and I struggle financially more often than I admit to anyone, my friends included. I don't talk about it because I don't want anyone's pity. I've gone to bed hungry (and did go to bed hungry) several days a week in recent and past months. No one except my mother knew this. I've cried out of hunger. This has been a reoccurring problem since my father passed away because the only source we have coming in is my mother's now that I have put freelance writing (which paid peanuts anyway) on hold to focus on finishing this SLP program I'm in. I max out my student loans so that we have a bit of money saved in case her paychecks aren't enough and we need to "borrow" from those loans. Guess what happens when I'm not in school. No extra student loan money, no extra money... more tightening of the belts.

In recent months, I wasn't eating well... and I went several days without having anything containing protein to eat. That's why my protein level dipped for the first time ever. That's why I think my red blood count dipped. I could have tortillas, rice, and potatoes... and nothing else that day, for several weeks. I would eat, yes. I would get "full" on some days but I wasn't eating a healthy diet. That will cause your body to stop producing what it needs to produce to keep you healthy. I also wasn't taking my iron pills for two reasons. First, with my acid reflux as bad as it had been in recent weeks, I wasn't able to swallow the large pills. Second, my bottle I had expired and I had to wait to buy a new bottle. But, once I did, I started taking them regularly. Unfortunately, that was only twice before my blood work was done so, you know, it wasn't going to show up right away.

Back to the doctor problems -- the hematologist wanted me to start iron infusions because my RBC was low. Having a history of medical and food allergies, I asked what the side effects could be. I was told "nothing; none. You'll just feel better right away." Furthermore, I was told that my iron levels were "never" normal and that it was crucial that I have done." I had to two options: iron pills and the iron infusions... except they ruled out the pills without consulting me first, saying that I haven't had success with them before. They pushed and pushed for me to have the infusions. I had a gut feeling that I shouldn't do them but they pushed so hard and made it seem like I had no other choice but to do that or else the hematologist could no longer want to see me... and would not even try to get to the bottom of my platelet issues. Reluctantly, I agreed because I felt I was forced to say yes.

After I left, the doctor caught up with me... "Oh, by the way... turns out there is a chance of an anaphylactic shock." I'm sorry, what? Didn't you just say there was NO chance of ANY side effect? Red flag. I went home and later that day I got my blood work results via the hospital's website. Surprise: my red blood count wasn't the lowest I've ever had it. Furthermore, they had also lied about my iron "never" being normal. All my iron panels except the red blood count were normal and have been normal for months. Red flag number 2.

I tried to get a second opinion so I went back this week. It was a different doctor but within the same hospital. This doctor told me that, with my history of allergic reactions, she wasn't sure why they wanted to do the infusions. She looked at my blood work results and said, "you're not even that anemic; just slightly! It's not a 'if you don't do this, you're going to die!' situation." She sent a message to the hematologist saying that I preferred to keep taking the iron pills that had worked for me in the past. I asked her if I could cancel my scheduled infusions. She said "yes". I double checked before I left. I felt relieved. I knew I didn't need the infusions. In fact, I had other folks who know about medicine (other doctors included) who agreed that infusions weren't necessary.

It wasn't even 5 minutes after I left that I received a call from the doctor. The hematologist insisted I do the infusions because they were worried that I would lose more blood and get worse. I didn't understand how that was possible. I had felt more energetic in the past month than I had in several months. The mental fog hasn't been much of an issue over the last couple of weeks, even when I was tired. Sure, I was oversleeping and the fatigue overwhelmed me some days, but I'm also under a ton of academic stress and I had a little thing called chronic fatigue. Feeling tired when I'm overwhelmed isn't new to me; it's happened even when I've been healthy (read: no anemia or other medical problems). I bet some of you feel tired when you're overly stressed out as well.

I called my mother and told her what happened. Before this appointment, we'd discussed my leaving if they were going to be difficult about it. I didn't think I would have the guts to go through with it. I also talked to my godson's mother (who is a dear friend) and I vented and ranted about it through FaceTime. She also suggested I leave the doctor and go elsewhere. Everyone I talked to that day encouraged me to leave. Everyone my mother talked to, including friends/co-workers (she works in a convalescent hospital so they know their stuff), said that I should go elsewhere. One particular friend/co-worker who is a doctor said, "Don't let her go through with the infusions! She doesn't need them. Go elsewhere for a second opinion."

In order to get a second opinion (with my particular insurance), I had to switch doctors and hospitals. I called my insurance company and asked if I could make the switch. Because of the enrollment period, I had to wait almost 24 hours before they confirmed that I could. It was done within minutes. I picked the hospital. It's the same one where my father had his operation when he was first diagnosed with cancer; the same one where the ambulance took me after my car accident two years ago. The woman who switched me over to that network asked me if I had a doctor in mind. I said I didn't. She could choose for me. It was a risky move but I just wanted to go elsewhere and so I would take whichever doctor was accepting new patients and was covered by my insurance.

I'm going to back up just a bit (before I go on) to tell you one more thing to make all of this make sense: I had St. Giuseppe Moscati pop up at the most random times over several weeks prior to his feast day. I would be doing one thing and his name or image would pop up. I received an Ignatius Press catalogue and while I was ripping into pieces to throw in the trash (because I can't afford anything right now and I didn't want the temptations), I somehow came across a DVD of his life in the catalogue... again, randomly not thinking anything about it except "this saint is stalking me. lol." Yes, I think "lol" sometimes. lol.

I finally looked him up. St. Giuseppe Moscati was a doctor. He remained a bachelor all his life and dedicated his life to helping the poor. Even if they didn't have money to pay for their treatments, he would give me the treatments... and money for food so they'd eat. He was an extraordinary man. The weekend before my last doctor's appointment, Mom and I watched the movie based on his life (thanks to a friend who let me borrow her account to watch the movie for free). It (the movie and his life's story) left both of us completely speechless. Oh, and what was one of the first things Dr. Moscati talked about in the movie? Platelets. Yep, it was a sign. lol.

Mom and I started praying, asking St. Giuseppe Moscati to please intercede for me. I left the doctor's office (prior to the call 5 minutes later) feeling at peace. That peace was replaced with anger and internal confusion and disturbance. Only minutes before I was informed I could make the switch to a different hospital and doctor, I had a nightmare in which the devil and I fought control over my body. I woke up with my heart racing, praying the St. Michael Archangel prayer. 5 minutes after I woke up, I received the call. While they checked to see if there were any doctors affiliated with the hospital I wanted to switch to, I kept praying to St. Giuseppe Moscati. "Please, let them find someone. Please, let them find someone, St. Giuseppe!"

I called my mother with the news after it was all said and done. She sighed in relief. The peace I had (which had settled in my heart immediately after I made the decision to leave my now former doctor) was still there. Yes, I would have to start the process over with a new doctor and a new hematologist (something that I had been informed before they made the switch) but I didn't care. I knew that God would help guide me. If the new doctor and hematologist say I should do the infusions, too, I'll do them. However, I want that second (well, more like 4-5th professional opinion at this point, lol) opinion with people who will regularly see me and will know my case.

I found out that my new doctor has an amazing reputation. Keep in mind that I didn't choose her and that she was chosen for me while I was invoking St. Giuseppe's intercession. Most of her former patients lament that they've had to leave her because of changes to their health insurances (different from mine) have made it impossible for them to continue seeing her. I still feel that peace and even hope that the change will be good for me and that she will be proactive in helping me get healthy once again. I'm actually going to make the appointment as soon as I finish this post; they're probably out to lunch until 1 p.m. which will be in 25 minutes from the time I'm writing time.

The doctors and hematologist didn't think I would leave. They thought I would go along with what they wanted, even when I had my reservations about it. The doctor I saw on Monday called me earlier this morning to inform me that the hematologist still wanted me to do iron infusions but, if I still didn't agree to them, I could take the iron pills. I didn't say anything except "thank you." The hematologist knows I left two days ago. They informed him that I canceled all my infusion appointments and even my follow-up appointment in late February with him. They knew I made the change to a new doctor/hospital.

As much as I wish I could say that I think they are worried about my well-being, I think it has more to do with the $$$ they're losing. They would've charged my insurance company a lot of money for the infusions (which apparently everyone believes was the reason why they practically forced me to do them) and now that money (plus whatever money they got every time they saw me) is gone. It's such a jaded way of looking at things (and it goes against my very nature to accept it as a possibility) but it seems like this is the case. For years, the hematologist refused to see me and now that I sought help elsewhere, they want to help me? No. Red flag, my friends.

Did I fail to mention that I never actually met the hematologist? They would send a new resident doctor each time I had an appointment with them. The same with my regular doctor until my beloved Dr. M (who left after her residency was up) said, "no, this is crazy. I'm going to request that you get assigned exclusively to me so I can help you." After she left, back on the "new doctor every appointment" rotation. I couldn't continue doing that. There was no consistency and stability I needed for my chronic health issues.

OH! I should also mention that the last blow-up with my former doctors happened on the last day of petition for the 54-day Rosary novena (where my platelets and health are one of the biggest intentions) and that I got my new doctor and hospital on the first day of Thanksgiving of the novena. Also, my new hospital is Catholic. Sure, let's call a coincidence. ;)

That's where I am right now. That happened over the last week and a half... when I had school stuff to go through. No one said doing the 54-day Rosary novena was easy but it's so worth it.

Right now, I'm focusing on taking my iron pills regularly and on staying as relaxed as I can about school. I have 4 quizzes due this upcoming Saturday. I have my portion of a group project due on the 5th. My final exams are happening between the 9th and the 15th of December. After that, a 3-week break. If I can miraculously pass all my courses (I need a 76% or higher on my final exam in one class to continue the program; for COMD 3400 if anyone is feeling charitable enough to pray for that score or higher on my behalf), I'll be headed for my final semester on January 8th.

I don't know when my next doctor's appointment will be but I will keep y'all updated on any developments. I know some of you have been praying unceasingly for my health and for school to go well for me. Sincerely, from the bottom of my heart, I cannot thank you enough. In your charity, I ask you to keep praying for me, especially now that there has been a big change with my health providers and with my exams coming up.

I feel at peace. I spent an hour before the tabernacle last Tuesday (exactly one week before the switch was made) and asked for guidance and peace. I know God will continue to help me, especially now with Mama Mary (through the 54-day Rosary novena) and St. Giuseppe Moscati's interceding for me. I even feel at peace over my school situation. It doesn't mean that I will pass or that I won't. I think it just means that I'm learning to trust God more and that is the peace I'm feeling.

Anyway, I'm really sorry for the super long post but I wanted to get it out of my system... and give a shout out to St. Giuseppe Moscati who Mom and I are now counting as my patron in health-related matters. Look him up; he is incredibly inspiring!

I slept away the day yesterday (don't worry; it's nothing to be concerned about) so I'm going to try to catch up with things.

I hope you're all having a lovely week thus far! Oh, don't forget that the St. Andrew Christmas novena begins today! I'm linking you to one of my favorite websites since they have a lovely graphic of the novena that you can bookmark if you want to do it. :D

As always, thanks for reading and God bless. :D

3 comments:

AnneMarie said...

Wow! What a story. The more I interact with and learn about healthcare of various sorts, the more sad I get that even though it shouldn't be about money, sadly, for some practices out there, money is such a huge factor and takes precedence over the actual needs and personhood of the patient. It's so sad. I'm really glad that St. Giusepe interceded for you (what a cool story!), and I will be praying for you!

Emmy Cecilia said...

I've noticed it, too. A lot of people into careers that are supposed to help people (e.g. doctors, nurses, etc) for the money rather than for the good they can do.

Thank you for your prayers!

crouss said...

A very well written blog. I can follow and picture what is going on. We are strongest when we are at our weakest. The fact that you writing this and able to do so well is a gift from God. You are glorifying God by your actions and your persistence.


A strong woman you are. Strong because you are using what has been given and rely on HIM!

Will be praying for you.