@egreen76 So glad you were able to speak to your Dr. Have a restful night and smooth procedure tomorrow.
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Sending healing thoughts. Hopefully they are able to find something that was causing your issue and solve it.
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My battle wounds of today. It took them 3 sticks to get an IV in me. It finally ended up in the crook of my left arm. The pic of my right wrist is where Dr Asad originally tried to do the procedure however we ended up having to go through my groin. No blockages!! He said my veins were very narrow and he said something about changing up meds to increase blood flow. I felt everything…the sedation didn’t take…40mg total of fentanyl and 4 doses of versed and I was nowhere near Lala land.
So we are still nowhere with what is causing my constant lightheadedness. He did prescribe Nitroglycerin for the Angina and I’m on Metaprolol for the arrhythmia.
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@egreen76 I’m so sorry to hear the sedation didn’t work for you and that they didn’t find anything that could be easily correctible. No blockages is very good though! Here’s hoping the medicne to increase blood flow works well for you.
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@egreen76 yikes, sorry the sedation did not work and you felt everything. I hope the new medication helps with the constant lightheadness.
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Thank y’all! I’m pretty frustrated that we really have no more answers than we started with. I am VERY thankful that pretty much everything found with my heart was normal except the arrhythmia (and it’s being treated with metaprolol) and angina (being treated with nitroglycerin). I’m don’t know the next steps. I’m waiting to hear back from my PCP on if I’m being referred anywhere else or what the game plan is.
I’m pretty sore today from the procedure. Mostly my wrist where he started to go in and couldn’t because of my small veins, but my right groin area where he did make it through is VERY tender!!!
I greatly appreciate y’all’s support and allowing me to vent through this. It has been a HUGE help! Hope y’all have a great weekend. I’m pretty much grounded until I can drive again…and I need the rest anyway.
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I have GREAT news and I have HORRIBLE news:
I had my appointment with my new Endo on Tuesday of this week. Over the last 30 days I have been in range 90% of the time!!! She said it can’t get much better than that. She also said that the ONLY thing she would change is how often and how many carbs I eat for each meal. She would like for me to eat 3 meals a day between 45-60 carbs per meal and 2 snacks. That is going to be VERY hard for me to do, but I will do my best. I am NEVER hungry unless my blood sugar gets to around 80. And then I am not really wanting anything major like a meal, so I generally grab a snack just to get something on my stomach. The only other thing we talked about is me going through a pod of insulin in 24 to 30 hours and I told her I knew they had only been approved for U-100 and asked if there was anything we could to keep me from having to change it so often. She asked me how much Fiasp I had left and I couldn’t remember so she told me to call the office when I started to get low and she would call in U-500 and she has already given me the numbers to plug into my pump. So I was very pleased with how that went!!! I owe it all to the members on here and those that came before me. I read a lot of past threads and I learn so much!!!
I qqqqq
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Gratz on your accomplishments!!
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The HORRIBLE News:
I had my cardiologist appointment on Tuesday to go over the results of my heart catheterization. He said he didn’t find any blockages but I do has a heart condition though. He said it was however the reason for my chest pain, pressure and shortness of breath.
I’ve spoken with my PCP. She says the only specialist I haven’t been referred to is a neurologist. I have an appointment with my PCP this coming Thursday and she said she would try to have a determination on stuff at that time.
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Really glad that you got the diabetes under control and the tech sorted, that is Great News! Congrats for all the hard work and determination. I hope the meal plan works for you, that meal plan would not work for my son at all, but it isn’t the worst place to start.
Sorry to hear about the heart issue. That doesn’t sound great. However, at this point you definitely are marching toward a diagnosis which is good news, at least they will have a plan for you. It is also good news that you don’t have ischemic heart disease which is one of the things they test for in the heart catheterization. So hopefully it is a manageable diagnosis.
So yesterday I was informed by my PCP that I have been diagnosed with Diastolic Heart Failure Class 2. They are referring me to Cardiac Rehab. I don’t know what that consists of or where I’ll be going for it.
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Well that is a diagnosis. Class 2 is ok, it just means you have symptoms when exercising. I am assuming the cardiac rehab is to see if they can get you back to Class 1, or just preserve what they can and try and slow the disease progression. The cardiac rehabs I have seen are usually just supervised exercise on treadmills and bikes and such to help you get your heart into better shape, with heart rate and rhythm monitoring by trained personnel.
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For those of you following my Medical Updates - it’s been a while - so please excuse the length of this post.
I haven’t shared with very many everything that has been going on the past couple of months. It kinda has me thrown for a loop, and until I knew I could explain it better than just giving medical terms, I just stopped. Actually, my mind took off in a million different directions researching and trying to figure out what my next steps needed to be.
There are two different types of Congestive Heart Failure: Systolic and Diastolic. Up until about 10 years ago, Diastolic wasn’t even recognized. Something else that is important is your Ejection Fraction - if it’s low your heart isn’t pumping out hard enough to send the oxygenated blood into your body. If it’s 60+, you’re in good shape (supposedly). I say supposedly because you can have heart failure with a normal/high ejection fraction as well. I know, because I do.
Diagnosis: Diastolic Heart Failure with Preserved Ejection Fraction. Arrhythmia and Inappropriate Sinus Tachycardia.
In other words - My heart beats too fast and then it drops and starts beating fast again. On top of that, during the beat, when it’s time for my heart to relax and bring in the newly oxygenated blood from my lungs - it can’t. My heart is too stiff to relax like it’s supposed to. So, when it’s supposed to be relaxing, it doesn’t bring in as much oxygenated blood like it’s supposed to. When it’s time to push the blood back into my body it can do that part fine - too well actually - but it’s not ENOUGH oxygenated blood going through my body.
I’m currently walking with a walker. (Ask Matt, I do try to do without it sometimes - but ONLY if it’s a short distance and I can get to a place quickly to sit back down.) I’m having to use it for stability due to the lightheadedness. I was originally using a cane to get around, but when I started with the physical therapist he took it away from me. It didn’t provide enough support. I’ve had Home Health coming to the house for about a month now. Physical Therapy twice a week, Occupational Therapy once a week, Nurse twice a week.
I was admitted to the hospital the first part of the month straight from the Dr.'s office. They were trying to draw fluid off my body. They found while they were doing that my potassium would go low. So, they had to give me more potassium (although if they’d have given me ALL of my medications I’d been taking at home…). After being released from the hospital, Home Health was called back out to continue. I followed up with the Heart Failure Specialist - Dr. Bock - that Monday after discharge. We did repeat labs to check my potassium…still low…increased potassium supplements last week. Changed my fluid pills. We will be repeating labwork I believe next week. I also follow back up with her next Monday. She’s starting to see me every 2 weeks right now it looks like - at least until we can get me “stable” and on a normal regimen. Dr. Bock says I need to go through the surgery for weight loss - and not just the sleeve. She wants me to have the full fledged Gastric Bypass. So, she referred me to Vanderbilt Weight Loss Clinic. I called them the other day to try to set an appointment up for a consultation. They asked me a bunch of questions. Due to my answers: Yes, I am on insulin. Yes, I take more than 10 medications a day (14 to be exact). No, I can’t walk more than 500 ft without a walker. I am NOT qualified to meet with the surgical weight loss clinic. I would have to go through their other clinic first and use it as a stepping stone to the surgical team.
I asked Dr. Bock for prognosis. IF I can’t have the weight loss surgery she flat out told me I am looking at a lot of the same of what I’m going through right now…and a lot more hospitalizations.
I’M NOT GIVING UP!!! In the midst of all this I have been doing my own research. No, there is no fixing a “Stiff” Heart. However, Mayo Clinic IS conducting research on Diastolic Heart Failure with Preserved Ejection Fraction (my diagnosis). Like I said, up until 10 years ago Diastolic Heart Failure wasn’t even a recognized diagnosis. There are more treatments available for the other kind. The ONLY way right now that they treat mine is with medication to only treat the SYMPTOMS.
I have an appointment at 6:45AM (TODAY) with Dr. Ung by video conference. He is a cardiologist at Mayo Clinic. I want in on those trials. It may be true that there’s no “cure” for my issue - but I want to be a part of finding what works for everyone else. And hopefully whatever we do will help mine along the way too. Maybe it’ll give me a few extra years that I wouldn’t have had if we hadn’t tried. So, we’ll see what he says in the morning and go from there.
If you’ve made it THIS far - you really are interested in what’s going on!! I will update once my appointment is over. It’s my understanding that Mayo Clinic works with your local providers for testing, etc. to keep the travel down. The one I’d be using is located in Jacksonville, FL. When it comes time for actual treatment - surgeries, etc - it would be done by their team in Florida.
PLEASE PRAY I GET ACCEPTED INTO THEIR RESEARCH PROGRAM!!! Treating the symptoms is NOT working in my favor right now. I can exercise ALL DAY LONG as long as I’m sitting down doing it and my heart rate may be higher, but it’s not as high as it gets when there is weight bearing exercises. Literally all I have to do is stand up and THINK about walking and my heart rate goes to 120+. I move at a snails pace most of the time, even with my walker and my heart rate goes sky high - 140+ by the time I sit back down. By that time, I’m out of breath, my heart is pounding, I’m light headed and feel like I’m going to pass out. If I’m on a sit down Elliptical Machine like I used at Cardiac Rehab I could at least keep my strength up in my arms and legs because it works out both. My heart rate doesn’t rise up enough to scare me. I think it was a Recumbant bike that worked the arms and legs at the same time. I could have stayed on that thing for HOURS!!! I just cannot do a treadmill. I can’t walk without my walker. ANYTHING weight bearing can’t happen without the walker…and even then it’s limited time due to my lower back/right hip and my legs begin to go weak.
I know it seems like I ALWAYS have something going on. I’ve been dealing with the back/hip issue for 5 years now. When I fell backwards in May I landed on my left elbow and my back. We never checked my back after my fall. I was more concerned with the chest pain/pressure and lightheadedness and what caused the fall to begin with. We’re just now getting around to checking my back out. I’m going Monday after my appointment with Dr. Bock to get my x-rays done on my back. We already know it won’t show anything, so we’re already ready to order an open MRI with and w/o contrast to see what is going on. But, due to insurance requirements we can’t do an MRI without x-rays first.
Oh, and the other thing that we’re waiting to hear back on is from my Neurologist. I had the head and neck CT done several weeks ago…and I’ve seen the results (they aren’t that great), but I haven’t had the “official” follow up with my neuro. So, I’ll let him tell me what he thinks about the results when I see him. I’m trying to get a video conference for that appointment so that I don’t have to go all the way back to Hendersonville. But, I’ll figure out how to get there one way or another if he won’t do a video call.
Ok…update over. I told you it would be a long post!!! I just figured I’d put it ALL out there. Maybe one day my children will look back on it when it matters the most and they’ll have my medical history. I can only hope that with the information I’ve found out regarding my biological family, they will update medical records with ALL the current information so that they can be screened and monitored and everything caught before it gets as far advanced as mine is.
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So sorry you are going through this. I do pray that you get accepted to the research program and you start to feel better. Keep up your great attitude and strength, and I hope that talking/writing about it here on FUD will help you, too. 
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Wow, that is a lot. Sorry that you seem to be hitting walls everywhere you look, and really sorry that the diastolic HF is having such an effect on you and you ability to perform daily activities. I will pray that you get into one of the Mayo’s clinical trials. Hang in there. You certainly have been given a wallop.
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