Wednesday, August 3, 2016

When your body has had enough...part 2

Hi Everyone. First of all thank you so much for all your affirmative comments from my previous post on this subject. I'm so sorry I couldn't get a personal reply to all of you, but thank you so much for taking the time to leave an uplifting note. We all agree that most women need and want to help other women, and part of that is by sharing our own experiences, good and bad.

As I said, I hate to put myself out there too much here on the blog, because inevitably there is some criticism and judgment, even if it's passive. There's a wide range of ages out here in the decor blogging world, and as an "over 50" blogger (way over), I think we are sometimes viewed more critically. No one wants to be thought of as an over-the-hill, sick person. I think opening ourselves up in the blog world can be majorly intimidating.

So, having put myself out there once again, please be sure that you read my previous post from last week, if you haven't already. Otherwise you might feel like you're walking into a movie at intermission. That first post will give you the background information and you will also understand why I'm sharing all this. I'm just going to tell you my own personal experiences and you can take from it what you'd like. If you see yourself in any of this, please know you're not alone.



Looking back I think the biggest lesson I've come away with after struggling through this last year can be entitled,


"Don't make assumptions" 

I've had heart problems for over 12 years. I've had a tendency to think that's been the root of all my other problems. I've had an Internist who is my Primary Care Physician that has felt the same way. Maybe that's been my problem, I've listened to him be reluctant to help me on many of my health concerns because he didn't want to step on the toes of his "doctor friend", meaning my original (former) cardiologist. (I have a cardiologist in St. Louis, but knew I also need one close to home, so this cardiologist I'd been seeing for about a year) There were so many symptoms that could and should have been investigated; many easily looked at through a simple Complete Blood Count test. This attitude has set me up for having to do a lot of digging on my own. I've said before, you have to be your own health advocate, otherwise you fall through the cracks of the system. It's tricky to try to be knowledgeable and informed on health concerns without offending your doctor or being too pushy. I've learned to preface my thoughts and ideas with "can I just share with you my personal thoughts on what I'm dealing with?". Otherwise they tune you out as some kind of amateur hypochondriac looking for a problem. So, for a year I had debilitating fatigue, dizziness, headaches, worsening chest pain, and severe GI problems that went undiagnosed because my PCP thought all my symptoms had to be the result of my heart problems, that he didn't want to get involved in. But here's the hangup, cardiologists don't want or have time to get involved in anything that's not heart related. There is a really big crack and I landed right in the middle of it. I'll just say at this point, that I'm leaving out tons of information, because I don't want to get into all of it. Much of it borders on malpractice and at the least, gross negligence. 

"Don't confuse your symptoms"

I started by keeping a health journal
and getting specific about what my concerns were. Back in October of last year I started having waves of fatigue and weakness come on me in the early afternoon. I get a full 8 hours of sleep and yet by 1:00 I was so tired I couldn't stay on my feet. Then came the dizzy spells that caused me to have to sit in the floor to keep myself from falling down or passing out. I was counting the days until my cardiologist appointment in early November, trying to wait it out.

Don't ignore symptoms just because they are confusing. I considered Diabetes, and all sorts of things, but blamed it on medications that maybe were too strong, or that I might need a different one. I had the standing appt. with my cardiologist for early November, but guess what? He decided to take a vacay and so my appt. was rescheduled for January. In a panic, I called the office but couldn't get an appointment until the January rescheduled one. I realize now I should have called the nurse, the Physician's Assistant or the Office Manager, anyone but the person that makes appointments. It's their job to keep the schedule, no matter what. Instead I tried to tough it out. The result was spending Christmas in bed because I was too tired and weak to do much of anything. The whole time I was having increasing daily angina and chest pain. I kept my appointment with the cardiologist in early January, but believe it or not, with all my symptoms and questions, they were disregarded and I was told to come back in 6 months. Cardiologists often don't know what to do so they do nothing. I guess he felt like I was just getting worse and that was inevitable. I'd had it. I said "can I have an appointment in 4 months, because I don't know if I'll still be here in 6". OK, the cardiologist said, "Have a nice day". I literally cried on the way home because I felt like I was a goner.

I've had so many problems, for so long, that unless they can prove I'm actively having a heart attack, they ignore the symptoms. I asked for a referral to a Hematologist, and had a visit with one who had just set up the cancer unit in an adjacent town. I had questions about problems with my blood thinner and could there possibly be a blood problem at the root of all these symptoms? But he emphatically said no, "there's nothing wrong with your blood." Interesting, I was diagnosed with severe anemia of an undiagnosed origin, just a few months later. He was busy with his cancer patients and didn't want to take the time to look into my appeal for a fresh eye on new blood tests. Not until I finally went to the ER later in March did things start to "unravel". I was looking at a lot more than heart problems.

"Don't take no for an answer"

By March I was feeling like an invalid. It was all I could do to get laundry done, and throw something together to eat at night. I was afraid to drive because of the dizziness. Finally I'd had it and decided the only way to get any help was to go to the ER and resign myself to 24-36 hours of being shuffled around. I called the cardiologist's PA, and let her know I was going. I had to leave a message on her voicemail. I was afraid that I'd had another blood clot as things were not getting any better.

As I said earlier, if you aren't currently having a heart attack at the ER, you are in no man's land. The last 2 times I've been to the ER I ended up being there over 24 hours without seeing a cardiologist. Stuck in a room, no meds but my own, no food, and no rest. They have a "Hospitalist", who is a general physician who in my case hadn't even read my previous cardiac history and wanted to send me home. I got tough and said, "I've been sick for months, and I haven't had any help. I'm not leaving this hospital until I know what's wrong with me!!!".

A standard chest X-ray upon admission showed I had a Hiatal Hernia, which was big enough to be seen on the film. That was the first indication of that problem. A hiatal hernia is a condition where a portion of the stomach pokes back up through the diaphragm and that causes food and stomach acid to come back up into the esophagus. This can cause severe heartburn and chest pain. I knew I'd had heartburn, but this was a complete other animal. I already had chest pain, but the possibility of a hiatal hernia hadn't occurred to anyone, least of all my PCP. They were talking about me seeing a surgeon. WAIT A MINUTE...I'm not ready for that route, let's look at the other issues, first. I don't want to confuse a hiatal hernia with a blood clot or worse. So next, I met with my PA, who ended up being a lifesaver. She was saying let's do an angiogram and see what's going on. The cardiologist should have been saying this back in January, but for whatever reason, that didn't happen. So that afternoon, they did the angiogram. Most people don't realize this, but you can do all kinds of others tests for blocked arteries, but an angiogram is the only definitive way to see what's going on in your cardiac arteries. Everything else is an educated guess, and you can have stent placement if they see blockages, so it's really the only way to go. It's not fun, but better than being misdiagnosed.

Generally, you're not knocked out during the procedure. You can hear what's going on, but you're drowsy, sort of in lalaland. But I was awake enough to hear the "Oh no!" and later, "we need to call Dr, So and so". At that point I knew I was in trouble. When my husband was called in and we met with the cardiologist, I got the news that both my arteries that had been grafted in during the bypass surgery were non-functioning; not clogged up, but collapsed. This had been my problem since early Fall and no one took the time to investigate, even though I'd questioned my cardiologist about that possibility. My heart bypass surgery was now null and void. Guess there was a reason for the fatigue, and dizziness...not having enough oxygen can do that to you. Can they be fixed? No, but there is the new heart procedure that's available...The Total Chronic Occlusion CTO Procedure for short. They go in your original arteries and roto-root through them. (or only one in my instance) But there's a catch...not everyone is a candidate. I would have to have more tests to find out. And the sad thing is, most heart patients don't even know about this new procedure. It's very costly and time consuming. Usually 4-5 hours on the table, and doctors don't make any money off of it, so not many cardiologists want to go through the training and then talking the hospitals into all the expensive equipment it requires.

Thankfully I had the procedure, and it was successful, but several weeks out, why was I not feeling drastically better? Losing a lot of blood brought my anemia to the attention of my new cardiologist. I started looking back through years of blood tests and found I'd been anemic for most of my life, but no one bothered to find that out. And even after several weeks of iron supplements,  I still wasn't feeling better...

"Don't be afraid to Take Action"

I hadn't meant to get so detailed in all this, but it has all just flowed out here at the keyboard. I've shared bits and pieces of this before, but I guess someone needed to know the long story, versus the short one. Apologies to all the rest of you. I had meant to get down to the progression of finding out all the reasons, but that will be the next "installment". I hope going through all this step-by-step helps at least one of you, or maybe a loved one. My focus on sharing all this, is no matter what you're symptoms, PLEASE don't feel like it doesn't matter and for goodness sake, take action instead of sitting on your butt putting up with dangerous health issues. Don't wait for someone else to make the decisions for you, because they won't!!

OK, next time I'll share the rest of the knot being unraveled.

xoxo,
telling my story here:

Share Your Cup at Mrs. Olson's
Feathered Nest Friday at French Country Cottage
Best of the Weekend at Ms. Toody Goo Shoes

29 comments:

  1. You are so right about being your own person on all of this. I am so very sorry that you have gone through all of this. Hopefully, everything will be found and corrected.

    A lot of my problems have come from having blood clots and I have the Factor V, which either was passed down by my mother or father. This was found out by being sent to a Hematologist who did a complete blood tests of everything. I have been anemic off and on all my life, but now I am taking Vit B 6 and 12, plus Folic Acid and blood thinners. I do have a heart murmur so they are watching that too. I also have COPD so when I have a spell I am extremely TIRED. So my dear you are not alone. Hang in there, hopefully everything will work out for you.

    Prayers are being sent your way for your speedy recovery.

    Mary

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  2. Wow! We just got our computer fixed after MONTHS of going without, so I am catching up on blogs. We had our own lesson in not just accepting a Dr's vague, laissez faire attitude in November/December! Without writing a book here, essentially I ended up taking my healthy, 43 year old husband to the ER because of chest pain. He'd had c diff, and was assuming his lungs hurt due to severe dehydration. I was doubtful, we went in, they ran every standard test and everything came back saying no heart attack. The Dr there at least warned that this could mean a heart attack was coming. He saw his regular Dr next day (I'd been trying to get him to change for some time) and that Dr expressed exactly zero concern over the chest pains and wanted to wait out the c diff first! (!!!!!) One miserable week later, having used up most of his sick days, his chest pains were increasing, but he felt like he was just being a wimp. Sunday night, he refused to go back to the ER, promised to call the Dr again. Monday morning, he did, got an appt for the afternoon, and just after 10 am, bolted upright, turned red and was unable to speak. I called 911, he passed out, I got to perform chest compressions for the 12 minutes it took for the medics to arrive. They performed 4 rounds of CPR before getting him to our hospital, he was then Life Flighted to a bigger hospital a couple hours' drive away. By the time the Drs there could see us, they had put him on an ECMO machine, which is complete life support, circulating his blood and working for his lungs. They were extremely doubtful, as it turned out he'd had a 100% blockage! The left side of his heart was completely dead. By December 3, I met with the Organ Donation Team, filled out paperwork, family, friends, and coworkers came and said their goodbyes. The morning of December 4 brought miraculous healing! Our cardiologists were stunned, happily so. He was removed from life support on Dec 7, his birthday. He woke Dec 11. He survived a Widowmaker heart attack and has been whole and back to work for three months. The whole experience was amazing, his brothers have cardiologists now, we know our children need to be aware early and have good Drs early, because it was purely genetic. My husband drinks only very occasionally, doesn't smoke, eats fairly decently (cholesterol was perfect), blood pressure was perfect. He has changed Drs, but I still can't believe that Dr wasn't concerned about such awful chest pain. I of course wish I would have pushed harder for him to see someone else, why do we feel so hesitant to voice pain and concern for our own health? Why do we feel like whiny complainers? I'm so glad you pushed!

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  3. My son who is 38 has lots of medical issues and been to so many doctors. He is anemic and his thyroid isn't working right plus had his large intestine removed. He goes into the ER all the time. He had to go to ER in a different state and they came up with different issues and he did a follow up and it was all different again. It is sad when you have to look for other options and all you want to do is feel better and not be so tired. The doctor in the other hospital told him he is on lots of medication and that makes the healing process slow down. I feel for you. My son asked me not to ask him "how is he feeling".

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  4. Can so relate to your problems Debra. We must stand up and let our doctors know when we really have a problem and not let them overlook it. I won't go into my case but if it wouldn't have been for a gastroentologist not giving up until he found the problem I probably would not be here today. So, stay strong!! Get well soon.

    Judy

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  5. My heart goes out to you and hope you will continue to be strong ♥

    summerdaisy.net

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  6. Debra,
    Goodness!
    We just never know what someone is going through, dear friend!
    I appreciate you letting us know, as it may help someone else!
    Thank you for sharing. . .and for letting us know that yes! we need to speak up and be heard!
    Fondly,
    Pat

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  7. So glad you stood up to them. All of us seem to have these same types of horror stories. I'm amazed you had the gumption to do it while feeling so bad. Hang in there girl. We're all with you. Jan

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  8. I've had a hiatal hernia for years. It isn't a frequent thing for me, but when it occurs, it's very painful. My word of advice is to always keep something like Tums with you at all times. I do. Then drink water and walk. That's the only way to bring the "burps" up to take pressure off and make it calm down. Sometimes at night it hits and I walk and walk around the apartment until it lets up. Anyway, that's my two cents!
    Brenda

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  9. I've had a hiatal hernia for about 12 years with the same heartburn issues as Brenda above. It's getting worse, so 2 years ago I saw a specialist in that area who was more concerned that I have a colonoscopy (which I'd had 5 years before with no problem) along with a scope. Afterwards, he said the colon looked fine and to make an appointment to review the hernia. Then the next day, his nurse called and said everything was fine (I know it's not!) and refused to make a followup appointment with the doctor! Pissed, I quit. I see now I shouldn't have and am inspired by you to seek further treatment with a better specialist. Thanks for sharing. You really did help at least one person (me) to get that hernia sorted out.

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  10. I hear stories like these all the time. I am so sorry you have had to go through all of this just to determine why you were not feeling well. Our son, who was diagnosed with stage 4 colon cancer a year ago, has had to be both patient and doctor pretty much the whole time. He was given up on by doctors here. He had to find a specialist in NY who treats what he has in an innovative and successful way. He just now had the primary tumor removed in NY and now they are treating his liver with isolated chemotherapy. His spirits are so much better, but it seems so wrong he has had to go through so much to fight to get the treatment he needed. Our God has done some mighty miracles and I pray and know He is guiding you and working to bring you healing too. Just don't give up and stop........you have to do what you have to do.......no one else is going to.. All of the drs here knew about the treatment in NY, but no one told him anything......he had to find it himself. It is shameful what is happening. I pray the Lord will oversee your research and give you discernment in sorting through it all. Keep fighting!! Thank you for sharing.............it really helps us all to see we are not the only ones dealing with such things.......

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  11. Oh, I feel your pain. What we went through with my husband's diabetes sounds familiar to this. I felt that a little malpractice was in order in his case too.
    Praying for you.
    Katie

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  12. I so agree that we have to be our own health advocate! We need to educate ourselves and be persistent. I was once actually sent home from an ER...I had a bowel perforation...and they told me it was gas. That one nearly killed me. Looking forward to reading how you are getting things sorted out!

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  13. Surrounding you with hugs, if I may be so bold ~

    GREAT for you for being your own advocate ~ more folk need to do this!

    here's hoping you can get to the bottom of this...

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  14. Debra, Never feel like you can't share your life with us. I am so sorry you are going through this difficult time and hope you have found the answers you need for improved health. I am having a MRI Monday but had to politely insist on one with my doctor and fight with my insurance company for authorization. Best of luck to you, dear friend.
    Hugs,
    Sherry

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  15. You are an amazing lady. You will help many people and are very brave. I am so lad you shared. I pray you are doing better.

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  16. Oh, Debra! I'm so so sorry you've had to go through all of this but thank God you stood up for yourself and got some action! You continue to be in my prayers.
    Blessings,
    Shelia ;)

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  17. I feel so terribly bad that this has been your road for so many years. Although you have shared your heart issues, you've continued to blog and enable us to enjoy your decor ideas and beautiful writing.

    I can't imagine what you are going through. Should you feel you have written too much, look at all of the sharing your friends have done by commenting. We women need people to LISTEN...family, friends and especially physicians. I searched high and low and scoured the Internet for a doctor who could treat my issues (not something to share now---this is your story). Not sure yet where you ended up but I pray you are on an upward climb at this point.

    Sending love, hugs and many prayers, dear Debra.

    Jane x

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  18. I hear your frustration. Without the detail, we are going through a mouse maze with the doctors and none of the doctors have really addressed my husband's hiatal hernia. Thanks for the information. I think I'm about to be a pain in the butt.

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  19. I'm sure it is pretty difficult to share such personal information, Debra, but I'm glad you're doing it. The woman I've seen the past few years was just short of being a doctor; she had all kinds of degrees behind her name, except for the MD. She was smart as a whip and I was glad I had her. She realized early that I knew my body very well and if I said something was wrong, she'd believe me and go looking for the causes. She was always ready to rule something out by having a test or xray done. I adored her! Then she took a job elsewhere and I lost her. But I learned long ago that I need to be a squeaky wheel to get something done. Most of us know our bodies well enough to feel that there's something wrong, even if medical personnel poo-poo our thoughts. But so many feel that we don't have the right to question our doctor. We've GOT to ask more questions! We need to stand up to them and ask for more tests. We need to get second opinions. This is our health! This is our life we're talking about, literally. I don't understand why more doctors won't go the extra mile...there needs to be a class for this in medical school. Along with Bedside Manner 1.01. It's not easy to fight for ourselves, especially when it needs to be done when we feel the worst. I hope your message reaches those who need it the most right now. Thank you for being so brave, Debra. God bless you with improved health!

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  20. WOW..Thank goodness that you kept pushing forward and insisting on more tests. People should never be intimidated by their Dr's and if you aren't getting results, get a second opinion!! I worked with Dr's for 30 yrs and luckily, they were all good, caring and very smart in their field. I am so glad you were persistent about your health issues and hope you are doing much better!!

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  21. Wow. I am so impressed with all that I have read. I cannot add anything to the conversation except to say that I finally put my name on the list of Important things to do. I have been having a boat load of dental surgeries, got my mammogram,went to cardiologist in March, went for gynecologist visit Monday, Family Practice this morning, eye exam next Wednesday and now waiting to hear back from the folks who will perform a colonoscopy, urologist in September and I will have been checked out from head to toe. Sometimes they can make you feel foolish if you have a complaint but are not coughing up a lung. All I can say is , keep up the good work. You are doing the right thing by insisting that they pay attention to your symptoms. There certainly did not seem to be a crowd, but they rushed me through everything this morning with little or no time to ask questions. My precious little doc was not going to spend any time asking questions on her own.

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  22. Thank the Lord you are alive. I have had some similiar issues like you, and I want to say thank you for your perseverance and I wrote in my journal a point you made: talk to the Physician assistant or office manager. Blessings.

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  23. Thank the Lord you are alive. I have had some similiar issues like you, and I want to say thank you for your perseverance and I wrote in my journal a point you made: talk to the Physician assistant or office manager. Blessings.

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  24. Debra, you are so right about taking a stand and not taking No for an answer. It's very seldom that you can even find a good doctor of any kind that will take the time to listen and not rush you in and out of their office like a herd of cows. It's such a money hungry world out there that most often one is made to feel like a number and that your problem isn't important! Well, let me get off that soap opra. I am so glad you persevered Debra. The sad part is that most would have given up and thrown in the towel. God is leading you every step of the way there is no doubt in my mind. Prayers continued to for you. Hugs and blessings, Cindy

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  25. Wow. It's really been educational and informative to understand the fine lines of where one can easily assume the cardiologist's scope of interest in our symptoms and how it only goes so far. I'm rally glad you were a candidate for the CTO procedure, but I cannot wait to hear what I hope is a dx and treatment for the blood disorder still plaguing you. Continued thanks for sharing.
    Rita

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  26. Hi Debra. You go girl, and keep on pushing, and keep on putting it out there so that if only one person is helped, you have done wonders. I personally think it might be helpful to yourself to talk about it. I know it does me. I feel very fortunate that my doc always just sits and listens to me and asks me what I think is wrong and then sends me to someone who can fix it. I had a small heart issue that sent me to ER. The hospitalist sent me home with meds, and didn't tell me not to take my usual BP med and I nearly past out. I knew what it was and didn't take any more of those pills, went to my doc the next day, and she said I had done the right thing, but set me up with a cardiologist who I go to every 6 months now. He has sent me home twice with the 24-hour monitor and has done an ultrasound of the heart. He said everything looks good but that's all. The second time I went back to hear findings of the 24-hour monitor, he wasn't there so I saw his PA and she explained exactly what all the tests showed. He didn't seem to have the time to do that. Keep on pushing and I am so hopeful that someone will get to the bottom of it and you will start feeling better my friend and in the meantime, don't ever feel bad about sharing..Judy

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  27. Oh my goodness! You poor thing. I'm so glad that you've finally gotten some of your issues resolved. I think the moral of this story is that sometimes the ER is the best form of medicine! They are forced to run a lot of tests right there and then.

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  28. Your right we have to be our medical activist...so many specialist only look at "their" thing and don't look for other things. I found this our maybe 15 years ago. I research and research to find answers or places to go for answers...I'm so hoping the next installment comes with a finding and some relief for you...

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  29. I am so sorry that you are going through this.

    Thanks for sharing with SYC!

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