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mom2angel

Premium Level User
Supporting Member
Joined
Sep 25, 2011
Messages
187
Location
Nebraska
really starting to lose faith in this hospital. We still don't have a surgery date. I met with the surgeon November 9th. He said he could do it the last week in November or the 1st or 2 nd week in December. Now they are saying January or February? They haven't physically seen me in over a month. I'm on 40mg Lasix daily and 50mg Spironolactone daily. Every part of my body is still swollen with the diuretics. I scare my husband every night when I sleep, because he hears me struggle to breathe. Just feeling like we are getting the run around. Has anyone been put on oxygen at night while waiting for surgery? Has anyone went and had fluid drained in the hospital? I've been trying to get something done for almost a year, but had an inexperienced doctor. I'm still young, and don't want to sit here and do irreplaceable damage to my heart. This is the craziest thing I've ever experienced with a hospital. I really think it is mainly because of having this inexperienced doctor. Everyone else has read his reports, and that is what their plan of action comes from. Frustrated. With this being my third OHS, all on the same valve, I feel limited as to where I can go.
 
I called that one Friday to get a referral and appointment to Mayo. My doctor never called me back with an appointment. I think I will call him tomorrow to make an appointment to just talk through things and options. He is just a family doctor, but he will listen to me. Maybe we can still get me in to the Mayo Clinic. The more this other hospital pushes me aside, the more I consider going elsewhere. This whole ordeal has been the craziest thing. I've never dealt with anything like this from any hospital.
 
Couldn't sleep last night. Got up at 2am and took a third Lasix. I did my research first. that put me to 60mg for the day. Woke up this morning 2 lbs lighter. Planning to add the extra pill each day this weekend and then call the hospital Monday in hopes to get something done. I can breathe a little better today. Luckily, this won't be forever.
 
If I got that degree of run-around, I'd be ready to kill something right now.

Can you call and see about self-referral to Mayo? A lot of centers will allow that, and then you might get faster action than your local. You would need to get records sent from your local doc, but maybe your internist can help with that.
 
I'm definitely thinking about Mayo. Monday I plan to call the Omaha hospital I am using and ask them to increase my diuretics, and ask about getting on oxygen tonight. That will help, and maybe give them the hint that they should act fast.
 
What the actual hell? I'm mad on your behalf. Call them and tell them you need a surgery date. Could you come to Minneapolis if you can't get into Mayo quickly? You have a complicated surgery on your hands. Is your Omaha team the best of the best and worth the wait?
 
mom2angel the medical system is a tough one to follow. I had my AVR a year ago at Mayo and was I ever busy taking care of most all of it!

Insurance company said I needed a pcp so I got one. He always has seemed half afraid of my heart and would walk and talk in circles it seemed.

I finally had ENOUGH!! Dug deep in my policy and did not need a pcp (small print) so I TOOK OVER. Start making calls to MN and ask them what they need. Call your docs office and tell them what Mayo needs. Assert yourself. Squeaky wheel does get the grease even if it seems to make others mad because they all want to show their authority. Pffft! Who cares about them when your health is the one in jeopardy.

Keep on pushing and don't stop. If someone does not do what you ask, find another that will. When you cannot breathe and have fluid build up it is very serious so go right to the emergency room if you have to. Make them see and hear you!

Every time I read your posts it makes my heart go out to you. I wish you the best and you go get em!
 
Thank you all. I really thought we would be done with all this by now. The last time I had this done was in 1993. I was 13 and my parents had to handle this end of it. Something to be said about the innocence of being a child :)
Dornole: I doctor at Children's Hospital in Omaha, NE, but will have surgery at the University of Nebraska Medical Center in Omaha. They are the best in this area, but not the best in the country. The one thing I like is that the surgeon is the same one who did my MVR in 1993, and he has been great with me. I did have a great experience at Mayo in Rochester, MN when I had my brain surgery in 2002, so I have no fear going there again. The longer the Omaha hospital gives me the run-around, the more I want to go to Mayo.
My husband and I have a preschooler and a 4th grader. The hubby works full time. I work 2 days a week, but am off now, because I am unable to work with my heart this way. I will go back after recovering from surgery. So, right now we are busy every day with work, kids' activities, etc. I know this is my main hold-up with calling Mayo's myself and making an appointment. I am on the road 2 hours a day driving the kids to and from school. Then there are sports and activities on top of that. My husband has said, do what you have to do to get better and we will figure out the kids and everything. As a mom, I still feel responsible for getting them where they need to be. But, I have great friends and family and know everyone will be taken care of. Plus, being tired and out of breath hasn't helped me get anything done quickly. Today, I'm hoping to get some heart related articles printed and put in a folder. Then tomorrow, I need to call Omaha and demand that something get done quickly or demand they call Mayo and get me a quick appointment. I'm going to stress how bad things really are, and ask them to increase my diuretics and put me on oxygen at night time. This whole thing makes me want to curse, but I'll refrain. I was telling a coworker back in September, that I wanted on oxygen at night time, because I kept waking up out of breath. It's now December, and they want me to wait a few more months. Hmm September was when I finally called and told them they had to do something. They put me on 20mg of Lasix then. Since then they have added 50mg Spironolactone and upped my Lasix to 40mg. (I just changed it to 60mg yesterday ;) ) The only reason they put me on any diuretics and increased them was because I called them and complained. They told me on Nov 2nd to start a daily weight log, because I complained of fluid. I have been keeping the weight log since the morning of nov 3. They did not tell me what to report. They gave me no guidelines of how much weight gain is too much, or anything. And, they have never asked about my weight log. They probably don't even know I have it..haha I'm less than impressed. I've also read about limiting your sodium when selling, and making sure you get enough potassium when on Lasix. The internet told me these things, as my doctor has said none of this. Again, I fired him, but as far as I know they haven't really told him. When I got my INR drawn Wednesday, Dr. Cramer's nurse called me with my results, as usual. So, he is probably still my doctor......crazy!

I don't know what to make of any of this. Everyone is in disbelief and can't understand why they keep pushing it back. I honestly think they are scared of the surgery. Not only because of it being the third MVR, but because I have had a prior brain surgery. Also, when I had symptoms of two TIAs within the last year, Dr. Cramer said it couldn't be cardiac related and I needed to go to neurology. I haven't had seizures in 15 years, and I am almost 100% sure this is cardiac related and has nothing to do with neurology. But, the fact that the doctor said it's brain related is making everyone scared. He also told me to exercise and I would feel better, when I told him I was short of breath on my back and with activity. There's a long list of reasons I am not impressed with him. lol

Also, since I have had a mechanical valve and an enlarged left atrium since the age of 2, my heart has learned to adapt to things in a different way. So, my symptoms showed up on the tests later than a lot of patients. That's one hold-up. And, I'm 37 and have always liked to run and workout, so, I appear to be doing better than I am. As a mom, I still have to run my kids to school, to Cub Scouts, etc. I can't just lay in bed all day. This gives the appearance that I am doing fine. I am out of breath sitting down, but I can still walk up a flight of stairs without taking a break in the middle. I am not willing to get that bad before they do something.

Sorry, that was too much to write. Right now, this is consuming me, and many of you understand. I am normally active and on the go, but for the last few months I have been spending my days sitting in a recliner as much as possible watching movies and such. And, I can't stand watching tv. I've been making the most of and watching old movies that I've never seen. Hoping to have this all behind me soon, and back to my normal life. The good news is that my heart itself is very strong. Once we replace this valve, the heart should be back to working great. Then I can get back to running and lifting weights.
Hope you all are doing great and having a great week! It's Sunday morning here. The hubby and son went to Kansas to deer hunt, so me and the little one are just hanging out doing puzzles and watching a movie.
 
Called the nurse today to ask to increase Lasix and/or get on oxygen at night. When she called back, she increased my Lasix to 80mg a day, 20mg Potassium, and said they will schedule surgery next week for January. Hope they follow through. Excited to be on more Lasix in hopes that I will have more energy when I get some of this fluid off. Still hanging in there.
 
Hi

mom2angel;n880694 said:
...and said they will schedule surgery next week for January. Hope they follow through. Excited to be on more Lasix in hopes that I will have more energy when I get some of this fluid off. Still hanging in there.

sounds promising ... I guess nothing on the Mayo front right?
 
Not yet, pellicle. I called today and asked how that was going. The normal nurse who was working on it was gone for the day. They will call me back tomorrow and let me know what is going on.
 
I really feel for you and I sure hope they can schedule you soon and the extra Lasix helps. They pulled such a ridiculous amount of water off me in the hospital. Ugh.

Are you sleeping in a recliner? That did help me breathe at night better. I'm not sure if oxygen would even help or not? It was a real misery.
 
mom2angel, so sorry to hear that you're going through this. It's bad enough to have medical issues, no one should have to go through problems with their doctor and hospital on top of it.

I agree with jwinters above, you need to keep pushing. Call them daily to make sure all scheduling etc is being taking care of.

Hope the Lasix helps and that you feel a bit better while waiting for your surgery.

Sue
 
Thank you guys. I'm feeling better this the extra Lasix. The last two days I haven't felt like napping, so that's a big plus. Monday is my appointment with the epilepsy doctor. Then we should be given a date next week. I'll feel better about this whole thing once I have a date. With e extra energy, I'll even be able to get things on my list done to prepare for surgery. Things are looking up, and this will soon be all behind me. Then I'll be on the other side recovering. Thanks for the advice everyone. :)
 
Update: Oh my goodness you guys. This just gets crazier. Really makes me think the Mayo Clinic is the way to go. A nurse from my family doctor's office called today to let me know that the referral was held up because there was one more step the doctor had to take. She was putting it on his desk for him to do tomorrow. I then made an appointment to see him tomorrow to talk in person about what is going on. Hopefully we can get this referral and go to Mayo soon.
Here's the crazy part. When I had those two episodes in April 2017 and Dec 2016, the doctor passed me off to neurology. My symptoms were symptoms of a TIA. They were also symptoms of irregular heart beats, which I have daily. But my doctor simply said they couldn't be heart related and sent me to neurology. 15 years ago I had a brain surgery for seizures and it cured them. Haven't had a seizure in 15 years. Saw neurology a few months ago since the cardiologist sent me there. They sent me to see an epilepsy doctor. Just saw her this morning. Remember, I don't have seizures and I have growth obstructing my mechanical valve and need it replaced. The seizure doctor whom I've never met asked me what happened on those few occasions, and simply said I think you are having seizures. So now, with her seizure diagnosis on paper, who knows if they will want to do surgery. I am 99.99% sure I am not having seizures and everything is heart related, but I'm not the doctor. :p So, I really think this is my sign to say the heck with UNMC and start fresh at the Mayo Clinic. This whole thing has been crazy from the start. If The Mayo Clinic will run their tests and replace my valve, this will all be behind me. :)
 
mom2angel;n880793 said:
Update: Oh my goodness you guys. This just gets crazier. Really makes me think the Mayo Clinic is the way to go.
When I had those two episodes in April 2017 and Dec 2016, the doctor passed me off to neurology. . They sent me to see an epilepsy doctor. Just saw her this morning.
An incredible circus

Total clowns
 
Amen pellicle! Mayo is now my goal. Yesterday's appointment was just another indication that we need to go to The Mayo Clinic. My mother-in-law went with me yesterday. I am so glad she did, because she got to see how crazy things are. She couldn't believe that that lady diagnosed me with epilepsy without even knowing me or running any tests. We talked maybe 20 minutes, and the Dr said, I think you are having seizures, so that is what I am diagnosing you with. Completely insane! I haven't had a seizure in 15 years and I take no seizure meds. The doctor actually started me on seizure meds yesterday. She called them in. I flat out told her that I will not be taking them. I will pick them up, since I've maxed out on out of pocket this year, so they will be free. They will be put in a cabinet when I get home and will not be touched.

I have irregular heart beats every day. In Dec 2016 and April 2017 I had a few incidents where I was speaking gibberish. Then in Sept 2017, I went a day and a half where I was mispronouncing words. My irregular beats have gotten more frequent. I believe that is because of this obstruction of my mechanical mitral valve. The goal here is to replace this valve. I truly believe these incidents were due to low blood flow to the brain. I'm in congestive heart failure waiting on surgery, but the hospital is dragging their feet. In the meantime, I still have to do my day to day things to keep my household running and get my kids to school and activities. So, my heart is still working harder than it probably should.
I copied and pasted the following from heartrhythmsociety.org. [h=2]Chaotic, quivering or irregular rhythm[/h]
Sudden rapid, irregular and chaotic heartbeats may be a sign of a common heart rhythm problem called atrial fibrillation (AFib). Rarely, passing out, or Fainting, may be caused by the most dangerous arrhythmia, ventricular fibrillation (VF). VF is the number one cause of sudden cardiac death. Within seconds, the person loses consciousness and, without immediate emergency treatment, will die within minutes.
  • Almost Fainting – Presyncope
    Sometimes people have symptoms before they faint. Presyncope can be a sign of a heart rhythm disorder and should be evaluated carefully.
[h=4]Symptoms include:[/h]
Dizziness, lightheadedness, or vertigo (spinning)
Blurred or narrowed (tunnel) vision
Sweating
Nausea (feeling sick in the stomach) and/or vomiting
Stomachache/abdominal discomfort
Heart palpitations
Headache
Confusion and/or difficulty speaking clearly or coherently (not making any sense)


The epilepsy doctor flat out told me that confusion and speaking difficulty cannot be caused by the heart. She said it is only caused by the brain and that is why she diagnosed me. The very last line of the above copy and paste says confusion and or difficulty speaking clearly. I have every single one of the symptoms listed above. Of course,an epilepsy doctor will say I have epilepsy, because that's what they do. My irregular heart beats have become more prevalent. I'm sure the stress of all of this is not helping. I think I need to find a good Electrophysiologist and take my case to Mayo, because I'm only getting the run around here.

My husband is going to call the surgeon today and talk to him or his nurse. He's going to tell them that if he doesn't give us a surgery date today, we are going somewhere else. He's also going to give his opinion on yesterday's diagnosis. He will feel better if he gets to talk to them himself. It may get nothing done, but it'll help him and at least the hospital will have notification that we are leaving.

Today I meet with my family doctor whom is supposed to be making my appointment at the Mayo Clinic. I'm hoping to know a date before the day is over. Mayo is further away and not as practical with young kids and busy lives, but I think it's where we need to be now. We won't be there forever, and then this will all be behind us. Everyone we know, cannot understand why the hospital is waiting so long. I can't explain it to them either. I know everything happens for a reason. When this is all over, I will be able to look back and see why it all happened like it did, but for now, I have no explanation.

Here's the ironic part: When I really had epilepsy in 1995, it took 3 years and several different doctors and different tests before I could get anyone to say I was really having seizures. The Mayo Clinic was the place that finally diagnosed me in 1998. Then, yesterday, a lady diagnosed me with seizures in 20 minutes with no tests and very little assessment, and I don't even have seizures! Oh my! Hope you all have a great day!! :)
 
Also, yesterday's appointment resulted in plans to do a 1 hour EEG on Dec 28. Then if it shows nothing, they want a 5 day EEG to try to catch a seizure (which I don't have ;) ) I don't mind the one hour EEG, even though it's unnecessary. I know what the 5 day EEG involves, because I did that before brain surgery. You are basically hooked up to EEG wires which are attached to a wall. You can only unhook to get out of bed to use the bathroom. i don't mind spending 5 days in a hospital, but I like to walk the halls, get up and sit in a chair, stand, etc. I won't be able to handle being stuck in a bed for 5 days for a test I don't need. Especially when I have kids at home. I cannot believe any of this. I feel like I'm on another planet that doesn't make sense. lol Circus is right, pellicle. I didn't sign up to work in the circus! All of these tests mean valve replacement will be delayed longer. Mayo is definitely the way for me to go. I am already in their system, because my 2002 brain surgery was done there. Fingers crossed this all goes great!
 

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