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The Issue Continues: Anemia and Medical Warning

Health Update: Anemia

I received an iron infusion at the hematologist office today. I’ve lost over a unit of blood since Friday. (Last week, I lost that much in one hour in the ambulance).

The good news is I had enough blood to lose a few units; the bad news is I’m still losing blood. I go back to the hematologist Thursday for a blood test and was told to go back to the ER if I become symptomatic.

I’m a bit frustrated that no doctor seems to be in charge. The hospital sent me home Thursday night with a prescription to get blood work on Friday but didn’t tell me who to give the results to. I called my cardiologist who took it and gave it to the hematologist. The OB-GYN has no clue I’m still losing blood and hasn’t asked.

This medical system is for the birds. The left hand doesn’t know what the right hand is doing unless I squawk. Let me give you an example.

Medical Warning

One Long Horrible Scary Night in the Hospital

The fourth day in the hospital (after I had received 6 units of blood and they slowed down the bleeding) I was scheduled for a colon scope. To prepare I had to drink a gallon of a horrid solution to clean out my system (I know, too much information, but I have a point to make). I started drinking at 10 pm.

I drank the solution and it worked well by 2 am. Then I was not allowed any water so I was dehydrated. They were unable to start an IV or draw blood because they could not “get a vein” even after they tried in the top of my feet.

By midnight my legs started cramping really bad (I’ve had nine natural child births–I am no baby about pain). By 2 am I was crying hard. My legs hurt bad. The nurse had no idea why my legs would hurt except maybe because I had been in bed for a few days. She reported the leg cramps to the doctor who allowed me a mild pain medication. The doctor did not know why I was having leg pains.

In less than two hours I was begging for more pain meds but couldn’t have any for 2 hours. Then the pain went into my chest. At this point my BP was falling, my EKG was a bouncing all over with double, triple and quadruple beats. Many nurses were running in and out. They gave me morphine. It lasted 10 minutes.

No one on the entire cardiac ward at Vanderbilt (a billion dollar teaching hospital) had any idea what was happening to me.

I had my Kindle with me so I looked up leg cramps on the Internet (through the tears of pain). Within 10 minutes I found one of the major causes of leg cramps was a lack of potassium. This made sense because the cleanse had wiped out all my electrolytes.

Any elementary soccer coach would know I needed electrolytes (even Gatoraid) so why didn’t the cardiologist or nurses know? I asked for potassium, but they refused because they couldn’t do a blood test until 7 am when the IV specialist got in. Accck!

After crying for seven solid hours they gave me the potassium. Within 15 minutes the pain was gone. If they would have started an IV before I was dehydrated, with electrolytes, I wouldn’t have had to lose a night’s sleep, bear excruciating pain nor have the trauma happen to my heart.

That morning they took me downstairs for the colon scope. The nurse asked “How was your cleanse?” I explained the leg cramps. She said, “Oh, that happens a lot.” THAT HAPPENS A LOT!!!??? Why isn’t there a warning label on the bottle of solution????

The whole hospital experience was something out of Bizarro Land. And from the way my blood looks I may have to go back in for more blood transfusions within the week. Sigh.

Well, thanks for listening to me vent. Maybe there is a scriptural lesson in here somewhere? I’ll watch for it. I have learned that anyone who goes into a hospital needs to be a bold self-advocate or get one. Don’t face this system alone!

Please pray for me. Thank you.

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24 comments

  1. Dear Robin,

    My heart goes out to you. Send forth your angels to prepare the minds of the doctors and nurses before you get to the hospital. Pray for God’s favor, wisdom, insight, knowledge, and love. He is with you. I am sending prays toward you and your family for peace, health, boldness in the Lord, God’s favor, mercy, and grace.

    Are you able to find a different provider to support your needs? Alternative approaches? Doug Kaufman may be able to point you in a differnt direction.

  2. Tamara Scire

    Dear Robin,
    The Lord prompts me to pray for you at different times both night and day, and I have never even met you. That is how much He loves you and is concerned for you. God keeps reminding me that He created you and He knows your body intimately. He is the Great Physician and I am confident He is going to heal you completely. In the meantime I am praying for you to be salt and light to every single doctor/nurse you come in contact with, not through your power but through the power of the Holy Spirit!
    In Christ alone we stand,
    Tamara Scire

  3. Robin,

    May our God sustain you when you have nothing left. May He comfort you when you feel alone in the Valley. May He fill you with His abundant life. His portion is more than you could ever need or even want. You are His precious possession and nothing you did made it happen or could ever change it.

    I, too, pray for you throughout the day as I’m led. You sound like you are doing a great job of advocating for yourself, it is just such a shame, though, that you even have to.

    In my thoughts and prayers,

    Bobbie

    Bobbie-Jo’s last blog post..Dear God

  4. Do they make Doula’s for this kind of health event… 💡 💡

    Still praying.

  5. Ugh…SIGH…I’m speechless (and that’s a miracle!:)! Hospitals never cease to amaze me.:-/ We have a son with Type 1 Diabetes (diagnosed 10 yrs. ago), and I have (more than once) reminded his endocrinology team that they are truly “practicing” medicine.:o)

    As someone else already said…we know that HE is our great physician! We continue to trust Him to be with you, dear ((Robin))…to strengthen you…to give you AND the doctors wisdom…and to sustain you during this trial.

    Please continue to vent…and we will continue to pray…

    Much Love,

    P* (now realizing that I wasn’t totally speechless:)

  6. Thank you for sharing. I knew something was terribly wrong. I will keep praying. Keep us updated.

    kim’s last blog post..Calling all homeschoolers

  7. Sharon Nelson

    Wow! What an experience! I will be praying for you and for your doctors (they receive as much Wisdom that can be poured on them!).

    Love,

    Sharon Nelson

  8. Robin: What an ordeal. I will keep you in prayer in the days ahead, confident that your abiding faith will sustain you. Hang in there & remember that there is a reason for all of this, even if it is anything but apparent now. Blessings to you, HS

    Hopeful Spirit’s last blog post..The White Carnation: A Mother’s Day Remembrance

  9. ~Cheryl~ from HS Lounge

    Ugh! Robin, that’s awful. I know, after taking care of my parents, kids with chronic conditions, and my husband through various serious events and procedures..I’ve learned to do my research and not to trust everything that the medical professionals do or say.

    I’ll continue to pray for you. This has to get better soon.

    Blessings..
    Cheryl

  10. Praying for you.
    What an ordeal. Sorry you are going though all of it, but I believe you are right: there’s a lesson in there somewhere.
    ((HUGS))

    Jacque’s last blog post..The Duggar Family Home

  11. Very informative and well organized blog. A goldmine. Thanks for the posts.

    Jena Isle’s last blog post..ORTHOTOLUIDINE METHOD FOR BLOOD GLUCOSE DETER MINATION

  12. So sorry you are suffering so!!! I am keeping you in prayer. Just a word of encouragement/advice: I have had some similar horror stories about doctors and hospitals. Find a doctor who will take charge, make him very clearly understand what you want and how you expect to be treated and stick to your guns. If you do not get satisfaction fire the doctor/hospital and get another!!!!! If you don’t take charge you may loose your life!!!!! I know from experience that if you don’t take care of yourself, they won’t do it for you!!!!! I have had to do this for myself and most recently for my dying mother. Too many horror stories, so little time!!!! 🙄 It’s hard, hopefully your husband can help, but it has to be done!!!!!! God bless you dear, I pray this will all end soon!!!!!

  13. I often wonder….

    Do they even read the patient’s chart? Seriously. I went through the same thing with my son. He saw 4 different doctors, each of them thought hte other had swabbed the infection for testing (staph) but none of them had and we had been in the hospital for two days already. Finally, I did what you did. I took matters into my own hands. I asked for his chart, looked up some info on the laptop, then started calling doctors. Withing an hour he was in surgery. 🙄

    It is certainly a good thing that we have the GREAT physician, isn’t it? I’m praying for you!

    much love, my friend…
    Amy

    Amy Bayliss’s last blog post..Some Beautiful Sites To See…

  14. I have been praying for you! I had one of those “type” of experiences having my first child. At a top-notch teaching hospital in Oregon. It was a nightmare. 😯 The only good thing about it was that my baby girl was born and was okay, I wasn’t. But that’s besides the point….

    I have to agree that you HAVE to have an adovcate! Is there someone who can speak up for you when you can’t? You really have to be the proverbial squeaky wheel nowadays. It’s always good to know what they are doing and why, especially for reasons like what happened to you!

    I will keep praying that you will be surrounded with caring empathetic COMPETENT medical staff! From the phelbotomist to the top doctor. You have so many people praying and lifting you up to the Lord! Your strength and faith are so encouraging! Keep on fighting the good fight! (And thank the lord for your Kindle 😀 )

  15. Oh my goodness… I feel for you so much! I am sorry you are going through it, but praying that you will see and feel God’s presence and hand in all of this. I know that your spirit and joyful/humorous attitude in the midst of all this craziness is convicting and humbling ME, so if that helps any?
    We are praying for you, you have mighty prayer warriors lifting you up! Rest, get well, keep us posted and know you are loved

    Rachel’s last blog post..Good Find. . .

  16. Robin, I am a family physician and am horrified at what has been happening to you. You desperately need either an endometrial ablation, in which the GYN “fries” the lining of your uterus (under general anesthesia) so that the tissue is killed and cannot grow, and therefore cannot bleed anymore. No more periods! And more importantly dfor you, no more hemorrhaging!

    This procedure is very safe and very low-risk. The lining of the uterus that is “fried” is thin, but the thick muscle wall of the uterus is left intact, so there is almost no chance of going through and puncturing the uterus. The anesthesia is the risky part of the procedure, but for you it would obviously be worth it, and the GYN might be able to do it under a spinal or epidural, with less stress for your heart. Endometrial ablation would be tremendously safer for you than a hysterectomy, and you are back to your normal activities the next day. Very seldom does anyone even need any pain medicine afterwards.

    So I strongly encourage you to call your GYN and demand that he do this for you. If ever there was a patient who needs this procedure, it is you! If he seems reluctant, or does not do this procedure fairly often(2-4 times a month or more) then ask for a referral to a GYN who does do this procedure. The thermal balloon ablation has a better success rate than the laser type, so I would go with it.

    Please feel free to e-mail me at hsmomof3blessings@comcast.net if you would like. I wish I lived closer and could help intercede for you with the doctors there. You need a good family doctor or internist who is willing to look at and manage your whole health picture, rather than just “treat and street” as is so unfortunately common these days.

    By the way, it makes me furious that your potassium level was not checked when you had those hours of excruciating leg cramps. These were an obvious sign of low potassium, which will kill you through heart rhythm disturbances if it gets severe enough. It sounds like you were getting dangerously close to this! And your suffering was COMPLETLEY preventable, and should never have been allowed to happen. (BTW, it is rare for anyone’s potassium to get so low that they have agonizing muscle cramps and heart rate arrhythmias like you did, so they should have been suspicious up front that your leg cramps indicated a serious potassium deficiency!)

    Oh, Robin! My heart aches for you. You need a friend or family member with a little bit of medical knowledge to stay with you at the hospital. But you need one who is not afraid to make a scene, even yelling in the hallway if needed to get an answer or get something done. The residents can ALWAYS call the attending physician at any hour of the night, but seldom do because it makes them look bad, but if they are forced to do so they will. Or at least an intern can be forced to call the resident who is supervising him/her, or the nurses can be forced to call the intern, if a family member or friend is screaming in the hallway that the patient is not getting the care she needs.

    This is outside the comfort zone of proper behavior for most of us, but unfortunately is needed all too often for patients in the hospital, so get someone who is not afraid to make a scene on your behalf. I hate the shortcomings of our medical system also; it is tragically ironic that you had state-of-the-art angioplasty that saved your life one month, then nearly die the next for want of a potassium infusion!!!

    Anyway, my prayers are with you. Do write me and I will give you my phone number and we can talk, if you would like. Take care!

  17. Ignore the “either” in the second sentence – sorry!

  18. Robin, I read your blog faithfully but don’t normally comment, I do and am praying for you.
    I read today with tears for you.
    My heart is sick for you and My prayers will be frequent and heartfelt.
    May you find strenght in him.

  19. Dear Robin,
    As I read this post I kept thinking as to why???? I’m so thankful the Lord led Margaret on the post above to you.
    I am praying for you daily. May the Lord protect your footsteps as you go back into this hospital….may He surround the nurses and the whole place as you walk through it with a his Ministering Angels. May the darkness vanish as the light of His glory radiates through you.

    Katia’s last blog post..E-mail problems

  20. sheriemcm

    Hi Robin,
    I have been praying for you. I have to agree with your last thoughts ” I have learned that anyone who goes into a hospital needs to be a bold self-advocate or get one. Don’t face this system alone!” I had 5 major abdominal surgeries in 14 months – and believe me when I say – do not leave a loved one in the hospital without someone staying with them 24/7 EVER. Your description of the night in the hospital rings so familiar to me. I pray you will be healed soon, but you MUST avocate for YOURSELF and not wait or depend on Drs. or Nurses to do it. sheriemcm

  21. Robin, I just hate that you had to go through such an ordeal and be in pain for so long. I know the chaos of a hospital all too well but if they actually checked your doctor’s order for as needed medication. Usually doctor’s will have standing orders for those type of things esp. with cardiac patients. I am glad you are at home and claiming your healing in His name. Love you!

  22. Oh Robin *hugs* that sounds hard! Ouch, ouch! I’m praying the situation with your blood loss is resolved soon!

    Jennifer Bogart’s last blog post..Gluten Free, Corn Free Bread Machine Recipe

  23. Ohhhhhhhhhhh dear Robin,

    What a nightmare!

    Your experience leads me to think back to King David. Although these are 2 completely different experiences, I’m reminded of how he was most adament about choosing God’s mercy rather than fall into the hands of man. The occasion I’m thinking about occurred when he suddenly decided to number the children of Israel, which was evil in our Father’s site. As a result, our Beloved sent His angel to David to ask what consequence he would prefer as the least of all the evils that could befall him because of his actions. David’s choice was to depend solely upon our Father’s mercy.

    Mankind can sink to the unthinkable, even in the name of doing good. Modern medicine can be a miracle, but I believe it can also be full of unspeakable tortures. Unfortunately, you experienced the bizarre human side of the medical community, which really has no clue as to what it is doing and its results. Because of the many special physical needs in my family, I am no stranger to the medical community, so I’m well aware of what it can do, both good and bad.

    Please know that remain in our thoughts and prayers, and that I’ve been trying to communicate with you via the web but my internet’s been too flaky for messages to go through here and there. I’m hoping this message will at least make its way to you, full of love, hopes, and dreams for you to enjoy a complete recovery (or at least for you to find renewed strength and in the arms of our Lord)!

    In His mercy,
    Marty

    Marty’s last blog post..Theresa replied to the discussion What are you reading?

  24. Wow Robin;

    That is quite the post…you seem so calm…Praise God (I hope it is not just the post flavor, but evidence of the Holy Spirit blessing you with calm in the midst of this very serious storm.)

    Praying for you…may the Doctors have wisdom that only could come from God and may you be surrounded with compassionate ‘helpers’ and encouragment.

    May His mighty hand rest on you and mark your every step.

    Kimmie
    mama to 6
    one homemade and 5 adopted

    Kimmie’s last blog post..Adoption update

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