Tag Archives: doctor’s appointment

POTS UPDATE ON SARAH

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A great deal of progress has been made since I last posted two months ago about Sarah’s POTS’ saga.  The purpose of sharing our journey is to get the word out about POTS (Postural Orthostatic Tachycardia Syndrome) and dysautonomia.  We also want to share any treatments that have worked for Sarah in hopes they may help others on this journey.

First of all, we’re very happy to have found an Electrophysiologist (which is a subspeciality of cardiology) who treats POTS.  This new doctor is only about an hour from our house so we’re very glad to have found him.  We met with him for the first time in February with subdued hope that he would be able to treat Sarah.  So far, after seeing him only twice and following his recommendations, Sarah is so much better!  Let me explain…

During our first appointment, this doctor informed us that she was drinking way too much water.  Whoa!  Wait a minute!  Everything we read and have been told up to this point (for the last six months) has instructed POTS patients to increase water intake!  Of course, she has been increasing her salt intake also during this time, but apparently by drinking so much water, she was simply flushing it right out of her system.  He also told her to begin drinking Gatorade because she needs the electrolytes.  This was revolutionary for Sarah!

We immediately stocked up on Gatorade but also found an organic sports drink on Amazon that is on order, along with the salt tablets that the doctor suggested.  Now, the Gatorade and decrease in water alone have not been miracle cures; however, they have single handedly aided more in her recovery than anything else aside from the Florinef!

She has had far less fatigue and her stamina has increased incredibly so.  She is still experiencing heart palpitations and the doctor has ordered a 24 hour heart monitor for her to wear for two weeks.  We should receive that any day now.  I think that will tell the doctor in greater detail exactly what she is experiencing.

Her former cardiologist ordered a post-event heart monitor but it only captured tiny snippets of cardiac information, so I feel this will be far more telling.  Sarah is off the Atenolol, which was disastrous.

Also, another disastrous drug for Sarah was Corlanor, which the new doctor prescribed.  She only took one dose, but its effects almost sent her to the ER.  We had a very scary few days.  As with any drug, some work for some patients and not for others.

We met with the doctor a few days after the bad episode and were apprehensive that he would simply write out a new script for another potentially disastrous drug. We prayed he would have wisdom to know how to treat our Sarah and I believe he did.  That was when he ordered the heart monitor.  I am thankful that he is digging deeper to seek to understand rather than gloss over her symptoms.

Before meeting with the Electrophysiologist, I prepared a cover letter to the doctor along with Sarah’s medical history and recent lab work results.  In the letter, I stressed the importance of obtaining treatment for our daughter and if he felt that he could not treat POTS, to please let us know prior to her appointment.  I stated that we did not wish to waste his time, nor ours.  We’ve seen enough doctors in the last six months and cannot afford to run in any more circles than absolutely necessary.  Included in her medical history was a chart with all of her diagnostic testing she’s had done (CT scans, etc.) so that he could clearly see the larger picture.  I believe the more information any doctor has (especially a specialist), he is in a better position to accurately treat the patient.  (not to mention, this prevents redundancy)  Yes, we have requested medical records from previous doctors, however, we have become keenly aware that often times, things fall through the cracks.  So, we take it upon ourselves, in the interest of trying to obtain effective and thorough treatment, to deliver as much information as possible.

So, I said all of that to say … After the doctor read through our little package that preceded our visit, I’m certain he understood the importance of attempting to find treatment.  I do believe Sarah is finally in competent hands…finally!  Her last cardiologist flat out told her that he could not treat her for POTS, which is why we had to find another doctor.  So many doctors, even specialists, know very little, if anything about POTS.  Since our family has never encountered a situation like this, it has been very frustrating.  I don’t think one could truly understand unless you walked through it.

POTS is not necessarily a common illness, however it is estimated that between one million and three million people in the U.S. have it!  Wow.  Sadly, it is often misdiagnosed or not diagnosed at all. It has been called the “Invisible illness”.  If you looked at my daughter, you would see a beautiful young lady, inside and out.  She’s lovely.  Sarah is our only daughter and she’s so very special to her mom and dad!  A priceless gift!  We always tell her she’s so beautiful!  (because she is, even if she rolls her eyes, understanding that her parents are naturally biased!)  But, to look at her, you would think she is just fine.  However, POTS is a dysfunction of the autonomic (things that function on their own) nervous system.  So, all these functions are happening on the inside of the neurons and axons … all invisible to the eye.

In reality and every day life for Sarah, there are lots of things happening!  When she gets up, she feels dizzy sometimes.  She’s often nauseated because the digestive system is also impacted by POTS.  She eats gluten and dairy free and is very particular about what she eats, but problems still persist.

The fatigue has improved with the advent of Gatorade but she still has limitations.  Sleep is a big problem.  Perhaps the greatest problem at the moment is the heart palpitations and sometimes heart racing.  Those are scary symptoms for anyone, let alone an 18 year old.

Lately her joints and muscles have really been bothering her and per the new doctor’s advice, she will see a rheumatologist in May.  Often she will use essential oils on her joints to ease the pain.

I’ve only outlined the most prominent symptoms at the moment, there are seemingly countless others.  There is virtually no part of the body that POTS does not affect.  It’s all very mysterious in a way, like a maddening puzzle to solve.

We are, however, very encouraged these days to be on a good path after so many dark days!

I just want to encourage you to never give up hope if you or someone you know is sick.  Keep knocking on doctor’s doors until you find someone who knows something!  I used to think doctors were experts in all things.  Nothing could be further from the truth.  Often through this ordeal, I have felt like they must be handing out medical degrees these days!  There are excellent doctors out there … it just may require a great deal of work and patience to connect with them!  But don’t give up!

My belief is that God is healing our Sarah bit by bit every day and that one day, she will walk out of this phase – completely healed!  Some days are dark.  Some days give us such hope.  But no matter what we see, our faith encourages our hearts to keep putting one foot in front of the other and press on!  Our miracle is just around the corner!

 

 

{Disclaimer:  I am not a doctor.  Nor do I play one on t.v.  Any medical advice is for informational purposes only.  Do research and seek out professional help for your particular situation.}

 

 

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Gallbladder Pain, Surgery & Recovery Tips

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Well, if pain isn’t an effective teacher, I don’t know what is!  It’ll make a believer out of you, that’s for sure.

Abdominal pain sent me to the ER on January 20th and subsequent, persistent pain led me to have a HIDA scan, which confirmed my gallbladder was only functioning at 36%.  Big surprise there.  I was in pain and I knew something was amiss!  Thankfully at my follow up appointment with my primary care doctor, he suggested I immediately make an appointment for a consultation with a good surgeon.  He gave me the name of the same surgeon who performed my daughter’s appendectomy this time last year, so I felt like I was in good hands there.  His office was able to schedule my laparoscopic cholecystectomy (gallbladder surgery) within days and I am happy to report that just a week post-op, I feel like I have a new lease on life!

Because surgery is such a big deal to those who are generally in good health and because knowing some useful tips can aid in the recovery process, I decided to post a few ideas that helped me.

So, here we go:

  1. Be your own health advocate!  Research the best doctors and hospitals in your area.  No one has your best interest at heart more than you.
  2. If something doesn’t feel right in your body, do not delay seeking medical treatment.
  3. Communicate effectively with all involved in your health care.  I prefer to type up my own “Medical History” information sheet, which includes herbal supplements I routinely take, thorough surgical history, allergies, etc.  I give this to each and every specialist I visit to ensure we are all on the same page.  I have found my efforts to be appreciated by the providers.
  4. Research but don’t over-research!  Searching medical advice out online can be a catch 22 situation.  First of all, everyone is unique in their symptoms, previous medical history and surgical outcomes.  Just because someone else has a horrible reaction to a particular drug, doesn’t mean you will.  And just because someone else has pervasive digestive issues post-op, doesn’t mean you will either.  Take everything you read with a grain of salt and discuss any concerns with your doctor.  This will temper science fiction with reality.
  5. Once your surgery date is scheduled, try to occupy your mind with useful tasks in the meantime.  Don’t spend your days worrying yourself into an ulcer.  Trust that the hospital and surgeon will do what they do every day – and that is, care for you in the best possible way.  And don’t forget to pray.  Ask God to give you peace.  He will.
  6. One thought that helped me a great deal leading up to my surgery was the fact that I would go in at 6:00 a.m. on that Monday, surgery would commence at 7:30 a.m. and by 8:30 a.m. it would all be over!  What a comforting thought!  Within hours, I would be on the recovery side of things and on my way to feeling better!  This thought process helped me tremendously!  This way, I didn’t solely focus on how scary the looming surgery seemed to me, but instead, on the positive side of things.
  7. Ice chips!  I have never in my life (well, outside of giving birth) loved ice chips more than post-op!  They soothed my throat, which was a little sore due to the breathing tube during surgery.  I was on ice chips only for the whole day post-op and they helped me so much.
  8. If given the option, stay overnight post-op!  My surgeon left it up to me and I really needed to stay based on my pain level and the fact that I had been also battling a raging UTI.  The nurse gave me a shot that helped to counteract the occurrence of blood clots, plus they attached these inflatable wraps on your legs to promote adequate circulation.  Both gave me a lot of peace.  Blood clots post-op are serious and can be fatal.  I wound up staying in the hospital for a day and a half.  Although I didn’t get much sleep, I did receive wonderful care.  It was a blessing to have my husband stay the night with me as well.  I think he slept better than I did.
  9. Pain meds … If you experience any unusual side effects at all, call your doctor.  You are not bothering them.  This is the job they signed up for.  I actually felt like I couldn’t catch my full breath on the first pain medicine they gave me after taking it for a little over a day.  Thanks to my brother-in-law, I finally called my surgeon to see if they could prescribe something else.  Don’t just live with the problem.  It could be serious.  Thankfully, I got a different pain medicine and only needed to be on that for a day or so longer before switching to Advil.   —   Going into the surgery, I thought I’d need to be on the prescription pain meds longer, but by Day 5, I was off of them.  I don’t like how they make you feel anyway and was overjoyed to be done with them!  (I plan on letting my primary care doctor know about the side effects of the initial pain med for future reference.)
  10. Bloating & Fluid Build up.  Because they fill your abdomen with carbon dioxide and the after affects from the surgery in general, your middle will be very swollen.  Expect this.  Plan on wearing the loosest clothing you can find post-op!  The first few days I definitely preferred wearing a gown.  It seemed to me that I appeared 9 months pregnant!  Ah!  I weighed myself once I got home from the hospital and I was up 12 lbs.  This is Day 7 and has gone down to only being up 1.5 lbs.  I expect to be at my pre-op weight very soon, if not below, based on my current diet.  The bloating will pass.  Give yourself time.
  11. Get up and walk around!  This seems like cruel and unusual punishment initially post-op, but it is crucial to recovery.  My husband and I did a couple laps around the hospital floor, pulling the i.v. cart and all that first night post-op.  I was glad to have my husband there with me since they didn’t want me to walk alone.  Even once I was at home, I continued to get up and walk to the living room and kitchen a couple times a day.  Do as much as you can tolerate…and proceed slowly.  Stop when you feel tired to rest for a moment.
  12. Sleeping.  Ah, this is the tricky part post-op!  At least it was for me!  I slept propped up in a sitting position for the first five days!  This felt best for me.  I also had a pillow under my knees for comfort.  While the pain medicine made me sleepy, it also had this undesirable side effect of making me feel “on edge”.  So, my sleep was really broken up (even more than usual) for the first several days.
  13. Burping and Carbon Dioxide.  Surgeries kind of throw proper etiquette to the way side.  I have never burped so frequently in all my life as I have post-op!  This is one of the ways your body expels the carbon dioxide they fill your abdomen with during surgery.  Of course, air exudes out of both ends naturally.  Many people experience intense shoulder pain post-op due to the carbon dioxide getting trapped.  A heating pad can help ease this.  I only had a little of this pain, thankfully.  I did, however, keep the heating pad close by to use on my rib cage.
  14. Bowel Functions.  Resuming normal bodily functions post-op is top priority, for sure.  Apparently, general anesthesia temporarily halts bowel function, in addition to the pain medicine’s common side effect of constipation.  (Of course, prior to gallbladder surgery, I had constipation due to it not functioning properly so the stage was really set for me.)  I was so glad the surgeon suggested Miralax as it is GENTLE on the stomach and will not cause further pain as it works.  I mentioned that I had Senna at home and was going to take that and he noted that it tends to cause cramping.  So glad we had that conversation because I didn’t need to add insult to injury!  Miralax worked like a charm and the best thing about it is, it does not contain gritty granules that are hard to swallow.  It is flavorless and can be mixed with water or juice.  I chose to mix mine with apple juice and I honestly couldn’t tell there was anything in my juice!  Be patient with yourself.  I am accustomed to my body working like “clock work” and begin to worry when it doesn’t.  But it is important to allow your body time to adjust.  Obviously if things do not begin to resume normal function in several days to a week, it’s time to put in a call to the doctor.  Allow common sense to prevail.
  15. Diet.  My post-op dietary instructions were to resume a “normal diet”.  I can eat whatever I like.  Stop.  Wait.  However, because the previous pain I experienced when my gallbladder issues were raging placed me on a chicken noodle soup, crackers and fruit diet, I hesitate to deviate far from that so soon.  I prefer to err on the side of caution and delay eating fatty foods, meats in any real quantity and any processed foods.  This is simply my preference.  I also have recently learned that I have a (non-alcoholic) fatty liver, so that is a factor for me.  Of course, we know that fatty  and processed foods place more of a demand on the digestive tract, so I’d like to ease my system back into optimum health.  Obviously this is a personal choice but I am choosing to eat bland foods, soups, fruits and vegetables and generally, as healthy as I can.
  16. Stay hydrated!  I keep two cups of water on my nightstand at all times right now.  This way when I empty one, my husband or kids do not have to go racing to refill my cup.  Plus, it encourages me to drink more.  The prescription pain meds dry out your mouth so much, you will want to drink anyway.  But, because our bodies are primarily made up of water, it is imperative to the healing process.  I do drink a cup of coffee in the morning, several cups of apple or cranberry juice throughout the day but primarily water otherwise.
  17. Shower as soon as you can.  My instructions were that I could shower pretty much right away.  This makes a world of difference in how you feel.  Even if you are still in pain, it helps to make you feel human again.
  18. Moods.  Your post-op moods may vary from euphoric to feeling a little sad.  I think this has to be normal in most cases, based on the medications and the surgical experience.  You will likely feel back to your normal self very soon.  Give yourself grace and focus on better days ahead as your body heals.  Obviously if low moods drag on, consult your doctor.  Again, common sense.
  19. When friends, neighbors, family want to help … Let them!!  Now is not the time for pride.  If someone asks if they can drop off a meal, graciously allow them to and thank them from the bottom of your heart!  Your family will thank you.  Be sure to write out thank you notes once you recover for all the thoughtfulness others have shown.
  20. Schedule your follow-up appt!  My surgeon wants to see me two weeks’ post-op, which means I will see him next Monday.  At that time, he will ensure my four incisions are healing nicely and offer the surgery pathology results.
  21. Primary Care Physician follow-up … Because my white blood cell counts were elevated upon discharge, I will follow up with lab work with my primary care doctor in a few weeks.  This is probably a good idea after any surgery just to ensure that your body is healing properly.

{Note:  These tips and ideas are based solely on my experience and my health history.  I am not a medical doctor, nor do I play one on T.V.  I offer this advice as considerations if you or a loved one has to undergo a similar procedure.}

I hope this list is helpful.  If you’d care to add anything, please do so in the comments below.  Thanks for reading!  Here’s wishing all of us good health!  God bless!

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Surgery in T-4 Days…

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The next four days cannot pass soon enough!  I’m focusing on my recovery period more so than the upcoming gall bladder surgery.  (at least that’s what I keep telling myself)  The truth is, no one wants to have surgery, but, in this case, I so want it behind me so I can move toward better health!  I’ve been on bed rest for the last three weeks since my ER visit and this is entirely contrary to my normal routine.  I’m usually very busy, so this little “vacation” of sorts, a miserable one at that, has been very strange.

The nurse called from the hospital yesterday to review my medical history, etc. and really put my mind at ease when we discussed my past vasovagal response.  She noted on my file for them not to place the i.v. in my hand, but in my arm rather.  What a huge answer to prayer this was!!  I really did not want to pass out again in pre-op, like I did previously with another surgery.  This offers a great deal of peace of mind for me and is so comforting to know they will respect my wishes.  Of course, I may have to remind the pre-op nurse of this on the morning of my surgery, but now I feel comfortable making my preference known and knowing they can accommodate it.

It is never a good feeling being out of control and that is exactly what a vasovagal response is.  It’s an involuntary reaction to pain or a situation that your physical body wants to escape.  And so, you pass out – sort of a self-preservation response.  So, I’m very glad to remove this scenario from possibly reoccurring altogether.

I’m so looking forward to feeling better!  I’ve been trying to reassure my kids (16 & 18) that this is a very routine surgery and I may be home the same day, etc.  They’ve been so concerned about me but I think they’re relaxing a little now.  I hope so.  I don’t want them to worry.  First of all, I know ultimately I’m in God’s hands and there is a great peace knowing that!  Secondly, I believe the surgeon is highly skilled and the hospital is very competent.  So, I believe my surgery should go smoothly and I’ll be on the mend very shortly.  This time next week, my body will be in the healing phase! Praise the Lord for that!

Then, I will recover for a couple months and have a hysterectomy.  (glutton for punishment, huh?)  Again, while I’m not looking forward to the surgery itself, I am excited about my recovery.  2016 will be a humdinger of a year but I know that God is walking beside me each step of the way and that gives me great peace!  I also am confident that He is working ALL things together for my good and His glory!  (Romans 8:28)

My husband and kids have been wonderful caretakers of me and I’m grateful for that.  I am, however, looking forward to resuming my normal responsibilities once I recover.

Last night our Bible study leader brought chicken, rice, salad and cupcakes for dinner, which was very thoughtful.  The kids were very excited.  And a couple neighbors have offered to bring dinner post-surgery too.  And our Bible study leader will bring dinner again next week.  We appreciate their kindness so much.  I think the last time we had someone bring us dinner was when our daughter was born – 18 years ago!  We are so accustomed to blessing others that sometimes it’s a little strange being on the receiving end.  Although if there ever was a time when someone needs a blessing – it’s when they’re going to have surgery, I have to say.

If you would, please say a prayer regarding my surgery and for peace for our family.  Thanks so much!  Blessings!

“God is our refuge and strength, a very present help in trouble…Be still and know that I am God.”  ~ Psalm 46:1,10

 

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Waiting for Surgery

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Surgery is such a common occurrence these days that it is possible you or someone you know will have surgery in the near future.  As I find myself in that category, I thought I’d offer some useful tips for both the patient and friends and family.

To the patient first – 

  •  My best advice is to arm yourself with as much knowledge as possible regarding the type of surgery you will undergo.  The more you know, the less you will worry.  The fear of the unknown is a terrible thing.
  • Discuss any questions or concerns with your doctor.
  • Prepare your household (stock up on groceries, make sure things are taken care of in advance that usually rely on your efforts.)
  • Pay all bills and make sure spouse knows where important papers are.
  • Pamper yourself a little.
  • Pray and leave the surgery in God’s hands.
  • Relax.  Before you know it, the surgery will be history and you’ll be on the road to recovery!

To friends & family –

  • Ask your friend or family member how you can best offer assistance.
  • Plan to prepare a simple meal to drop off after surgery. (Don’t linger.  They need rest and are likely in pain.)
  • Offer to do light grocery shopping.
  • Write a thoughtful get well card.  (Everyone loves to be thought of, especially when they’re not feeling up to par.)
  • Give a little thinking of you gift. (lip balm, lotion, word search puzzle book, etc.)
  • Pray for their healing, comfort and peace during this time.

 

I hope this was helpful.  If you’d like to add any tips, please leave a comment.

Here’s wishing all of us a healthy year!

 

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Lobster Bisque & Update

My thoughtful and kind husband was at the grocery store on his way home from work this evening.  He picked up rotisserie chicken and sides for dinner for himself and the kids.  I don’t have much of an appetite these days so I didn’t know what I wanted to eat.  Not much is appealing to me.

He really surprised me when he came home with lobster bisque and saltine crackers.  I must admit I didn’t know if I’d like it.  Boy, was I mistaken!  It is one of my very favorite soups now!!  I have a feeling this may become a standard item hubby picks up for me.  🙂  I told him that he has good taste!  😉  This was a real step up from the standard chicken noodle soup I’ve had for the last week.

My future daughter-in-law picked me up this morning and drove me to my GYN appointment.  During my ER visit last week, the CT scan showed a sizable fibroid tumor, so today was my follow-up regarding this new discovery.  We were there for over two hours!  It certainly was a comprehensive visit, I have to say!

First of all, I love my GYN doctor!  The entire facility is very elegant and modern.  The waiting area is set up with many groupings of comfy couches, chairs and coffee tables.  It has an overall very relaxing feeling.

We discussed the options I have regarding the fibroid tumor and I think a hysterectomy is the best course of action, given my symptoms.  It was great that they could do a sonogram right then as well.  They also took some blood to run a genetic cancer screening test, which will determine whether or not she also removes my ovaries.  Very interesting.

It was a great comfort to me having my future d-i-l by my side throughout the entire visit.  My head was swimming with information, which she helped me recall later.  She works in the ER at an area hospital and is a good person to have by your side.  If we hadn’t bonded before, we have now!  😉  She’s wonderful!  If I had to walk through all of this alone, it would’ve been far more daunting.  I didn’t know I even needed or wanted someone to go with me.  It never crossed my mind really, but when she offered yesterday, I quickly accepted.  I’m so glad I did.  She helped me raise questions to the doctor and just was an overall blessing to me.  (I think my son chose well.)  🙂

Regarding my gall bladder issue, the next step is the Hida scan in about a week and a half.  Depending on what that shows, we’ll see whether or not I will require surgery.  Naturally, I hope not; but whatever the case may be, I just want to feel better!  I just had another round of blood work done a couple days ago also, so the G.I. doctor will review that as well.

So, as soon as I get these “maintenance” issues taken care of, I’ll be good as new!  It is a lot to face all at once but I am so thankful that the Lord always makes a way.  He is a good and loving God who takes care of His children.  I’m so thankful for that!

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My Recent ER Visit

I had my Land’s End red, flannel pajamas on and had settled in for a long winter’s night. My blue eyes had been asleep for about an hour and woke up as my husband was brushing his teeth, preparing to go to bed himself.

A gnawing pain in my abdomen grabbed my attention, along with the fact that I was now shivering uncontrollably.  And it wasn’t because I was cold.  It seemed my body was really going through something.  I wrestled within myself as to whether or not I should go to the emergency room.  I really didn’t want to go.  However, my then 17 year old daughter just had an appendectomy last year and I was worried it may be my appendix!

My husband discarded his green and blue plaid, flannel pajamas for jeans and we proceeded to the hospital at 12:30 a.m.  I had to literally hold my jaw closed on the ride there just so my teeth wouldn’t keep chattering.  I had never had anything like this to happen before.  I’m the healthy one.  I generally don’t get sick.  Mom has to stay strong for the rest of the bunch, right?

Fortunately, once I completed the necessary registration paperwork, the nurse called me back to triage.  It was pretty miraculous that the waiting room was completely empty!  From there, once she took my vitals, she got me situated in a room in the ER.  She had me change into the hospital gown, which, by the way, is entirely frustrating to wrestle with!  Upon shifting in the bed, this gown literally could choke you.  I pondered a better design…maybe an elastic neckline?  After all, the patient is already encumbered by a plastic tube in their arm, otherwise known as an i.v.

The cheery nurse brought me morphine for the pain and a medication for the nausea. Interestingly enough, despite the morphine, I could still feel the pain.

My poor husband was restlessly attempting to nap on two, hard chairs beside my bed in the midst of all the circus.  I don’t know if he ever got more than two winks.  He was up all night and still went to work!  I felt so bad for him and prayed for strength.

It took a couple hours before the doctor came in and then more waiting for my blood work to come back.  Depending on the results, she would order an MRI if it was my gallbladder or a CT Scan if it was my appendix.  I was also feeling nauseated, so I think everyone concluded it was likely my appendix.  I even was preparing myself mentally for the possibility of having emergency surgery.

Around 4 a.m. the male tech wheeled me down to radiology to have a CT Scan.  The nice tech noted that we shared the same birthday.  He injected a dye in my i.v. for the scan and I forgot the odd sensation one receives along with that.  Glad when it was over.

Well, we finally got the news from the doctor that it was, in fact, not my appendix.  Everything looked fine.  For a split second, I felt a little silly there, laying on the hospital gurney, having abdominal pain for nothing.  Until the doctor explained…

There were some “incidental” things noted on the CT Scan.  For one, apparently I possess a “fatty liver”.  I thought there must be some mistake.  I don’t drink, never have.  It’s called “Non-alcoholic fatty liver” and from what I’ve subsequently read, 1 in 4 Americans have it.  They likely just don’t know.  It’s when more than 5-10% of your liver is fatty.  The heartening news is that it is completely reversible through proper diet, lots of vegetables.  But it can take over three years to rehabilitate.  Untreated, it can lead to sclerosis of the liver, which can lead to liver failure.  Well, that’s good news in the wee hours of the morning, isn’t it?

I thought I was having appendicitis… But, wait, there’s more …

I also have Diverticulosis, small holes in my colon.  If those holes become infected, then it becomes Diverticulitis.  Both, not good.  But, with a proper diet, can be treated.  Well, looks like a more stringent diet is on my horizon…  But, wait, there’s still more for this 45 year old body…

Gee, apparently, I’m not as healthy as I thought!  Ironically, despite the fact that I am overweight, I eat very healthy.  Probably the most healthy I ever have.  My now 18 year old daughter preaches, lives and breathes healthy living to all of us.  How can I not?  No, the truth is, because I lost my Mom to breast cancer when I was 23, I have been on a quest for optimum health ever since.  But, I digress…

So, the third bit of good news this ER doctor shared was that I have a sizable fibroid tumor.  Upon further research online, this explains so many other symptoms I’ve been experiencing, but I had no idea.

So, I have three doctor’s appointments scheduled for next week: the G.I. Dr., my primary care physician and the GYN.  I’m looking forward to having many questions answered.

My husband and two children have been wonderful, taking care of me as I try to rest in bed.  Even my daughter, who has POTS, has made hot tea for me and brought me snacks when she’s up to it.  Today is not a good day for her, so hubby and my son are filling in.

Now that I’ve given hubby instructions on how to operate the dishwasher, he loads and our son unloads.  Last night, the kids collaborated on dinner.  Part of the time I heard fussing and the other part was mutual laughter.  It’s always interesting how things come together when mom is out of commission.  I call them kids but they are 16 and 18.  I’m thankful they both know their way around the kitchen very well and are very kind and thoughtful.

I’m so thankful for my family, for good health care, for our home and for the hope that I have in God.  The hope that He is with me every step of the way, even if that includes upcoming surgery.  He is a God who walks beside me and that gives me great comfort.  I also know that He is working ALL things together for my good and His glory!  I will not fear the future, but will rest in knowing that God is already there, for He transcends all time and space.  Nothing catches Him by surprise.  And all my days are planned by Him.

 

 

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Being a Healthcare Advocate

An advocate is one who stands in place for another, who fights for another.

I am Sarah’s greatest health advocate.  Sarah is my 18 year old daughter who was recently diagnosed with POTS.  (I wrote a lengthy post on this that you can check out if you’d like.)

I suppose being a mother predisposes one to being an advocate.  After all, no one wants what’s best for their child more than their mother.  I have become a “Mama Grisly Bear” when it comes to my daughter.  My further training in this regard came in recent years, caring for my aging father.  He particularly has needed an advocate during doctor visits and his hospitalization several years ago when he survived sepsis.  I told him then that I would always be his best advocate and I meant it.  I still am.

In recent months my role as “Health advocate” has expanded to include my teenage daughter, Sarah, who has seen more specialists than one can imagine over the last year.

Last October I became convinced that my daughter’s symptoms matched those of patients with Lyme disease.  In fact, I was pretty sure she had it.  Of course, I have no formal medical training (unless you count being a nurse’s daughter).  🙂  I read articles online and really researched this.  I spoke with friends about it and they, too, were fairly convinced.

So, when we met with Sarah’s new primary care doctor, we strongly requested her being tested for Lyme.  And not just any old test.  We had read that the Western Blot test was the most accurate and that was what we wanted.

Not only did her PC order the Western Blot test, but also ordered another Leukemia round of blood tests as well as any markers in her blood indicating other diseases.  We were glad she was so proactive in ordering these tests but were sent on another emotional roller coaster while we awaited the results once more.  Thankfully, all results were negative!

Because Sarah has seen so many specialists, we always type up a “Medical History” information sheet, which is typically several pages long and includes all recent MRI’s and CAT scans and other diagnostic testing.  I also photocopy all recent lab work results so they know instantly what she’s already been tested for at a glance.

I’m sure some smile at this and perhaps think my efforts are “over the top”, but most thank me wholeheartedly for doing this.  It eliminates many questions and saves their time so they can concentrate on the bigger picture.  It also means we do not have to answer the same questions over and over again, specialist to specialist visit.

Part of being a patient advocate is steering the treatment in the direction you are most comfortable.  Example: Our family tries to eat very healthy and veers toward a more holistic path when possible.  We’re not opposed to medications, but only when necessary and if a supplement couldn’t work just as well.  I am reminded of this because several doctors have suggested birth control for Sarah as a treatment for a couple different issues (that have nothing to do with birth control itself actually).  Sarah has done some research into this drug and is adamantly opposed to using it.  I have to say that I am not a fan either and wouldn’t want that necessarily for her.  My mother died at age 53 of breast cancer and studies have shown increased estrogen levels lead to breast cancer.

Each time we have politely declined using it, both doctors were certainly understanding, which we appreciated.  (I had a doctor years ago discharge me as his patient because I refused to go on a steroid because we were trying to conceive at the time.  So some doctors believe it is their way or the highway, apparently.)

Side note:  Sarah wanted to be a midwife for a while and during that time, educated herself greatly in every aspect.  She even was able to attend a home birth, which was a memorable experience for her.

So, you might say I am a Captain of the Healthcare Sea on my daughter’s behalf, in a way.  Obviously, my daughter’s care is ultimately up to her doctors, but if I believe a leaf needs turned over, I will advocate for it.  Steering is definitely a part of being a good advocate.  So is educating yourself on the symptoms and known diagnosis.  Don’t be afraid to speak up.  In this case, it’s my daughter’s body that we are dealing with.  She may be a stranger to the specialist, but to me, she is a huge part of my world!  And my heart.

At the end of the day, I must know within myself that I’ve exhausted every avenue in an attempt to restore my daughter’s health.  I feel like I’m fighting a battle for her wellness and recovery.   One on one time with each doctor is very limited, so having medical history documented and any questions written down is vital for a successful visit.  It also eliminates “brain fog” during the visit.  It’s an amazing thing that happens when you’re finally face to face with the doctor, often after months of waiting to get in, and then all pertinent questions fly out the window.  Another thing that happens is, whatever the doctor says during the visit winds up becoming a “brain blur” afterward.  I recommend writing notes, asking questions and later documenting the visit for clarity.

I am present during every doctor visit my daughter has, even now that she has turned 18.  She’ll say that sometimes I answer the doctor’s questions and that she wished I would allow her time to do that.  So, I’ve scaled back and attempted to allow her to do most of the talking when possible.  Often what happens is that she experiences POTS “brain fog” and goes on bunny trails in response to the doctor’s questions, which can be confusing and time consuming.  And each visit is so key to Sarah’s recovery that I feel like much is at stake and we must make the most of our time.  So, I speak up when I think it’s useful to the doctor’s understanding of her symptoms.  Sarah thanks me.  Most of the time.  😉

Follow up is another major component of advocacy.  It has been amazing to me the degree that I have had to involve myself and relentless messages to doctor’s offices in order to obtain lab or other diagnostic testing results.  It matters to no one more than you and your family.  Why wouldn’t you follow up?  If the doctor says the lab results should be ready in three days.  Guess who’s calling in three days?  Me!  The sooner we have the results, the sooner treatment and recovery can begin.

Have you ever had to be a staunch advocate for a loved one who is ill?  If so, can you offer any sage words of advice?

 

{Medical Disclaimer:  I am not a doctor.  I don’t even play one on t.v.  I am a mom.  A very loving and dedicated one at that.  The information contained in this blog and any other article on my page are based on our experiences, what we’ve read and our opinions or understanding of POTS.  Please consult a licensed physician for advice and conduct extensive research on your own.}

 

 

 

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