day by day of evaluation

[Toogoofy317]

For those of you getting ready to go through this same process I thought I'd give a play by play account of the event.

I found it a lot better to finally come into the hospital on my own accord! So, I packed the laptop. What a life saver it definately helps to pass the time. Now I get to talk to you guys while I'm here.

So, this is the first day not a whole lot to report. Just the admission paperwork. Make sure you bring a book with you. It took them almost two hours to find me a room. After, I made it to the room then they have to start a line. For most this is an easy occurance today wasn't too bad though only took four tries!

I've already been seen by four doctors but ironically no orders as of yet. One doctor has mentioned though starting me on doubutamine he called it "jet fuel" for heart failure patients.

I'll keep everyone updated as the week progresses. And I'll be on-line when I can my AIM is Toogoofy317 feel free to drop a line

[NoCrash]

Well, I'm certainly impressed! A hospital with internet access for your laptop, right off the bat? Cool.

Hey, maybe they can supercharge that IV line with some of the good antibiotics for your earache, etc. Has that been brought up?

What tests have they got scheduled for you?

Good luck! Hang in!

Rob

[Toogoofy317]

All I did to get the internet access was bring a dual socket phone line. It's dial-up but it is better than nothing.

Found out what some of the junk in the chest was. Not bronchitis a bad case of CHF. They gave 40 of lasix and within about 20 minutes I had put out over 1500. So, as usual somebody got the wrong diagnosis, Funny how last night they said my x-ray was clear and I had nothing wrong.

During the week I'm supposed to get an echo, stress, V02, right sided heart cath, colonoscopy, EGD, and a PICC line.

Has anyone else been on Dobutamine? They are supposed to start me on that tomorrow.

Thanks,

Mary S.

[Cynaburst]

Mary - Just curious - When you were coughing, were you coughing up yellow or green mucus? I still have bronchitis after a month, and saw my PCP today for yet another antibiotic. I am still coughing up mucus (which I also have coming out of my nose via a sinus infection) and had a lung x-ray today to make sure I don't have pneumonia. Neither of us thinks I am in CHF (my weight has not increased and my fingers haven't swollen) but I am wondering what caused those docs to diagnose CHF as bronchitis.

[Midge Rollins]

Mary, sounds like you are in a good place finally. Hopefully now things will go your way. Are you an in patient? Am keeping you in my prayers.

[Toogoofy317]

Cyn,

I did have a little bit of coughing. But, the phlegm was a clearish color. They do believe I've got something going on too but my breathing was horrible when they checked today. They said I had no lung sounds in the base of my right lung! I also had no weight gain. They said because I wasn't eating that I was losing weight and balancing it off. But, my feet had no swelling either.

Midge, I am inpatient

Mary S.

[Cynaburst]

Well Mary, I certainly hope that you (and I) both get straightened out soon! I hope that your evaluation goes well and that you are soon on your way.

BTW, my the stuff that I am coughing up is still yellow/green, so hopefully I am being treated for the right thing! Thanks for comparing notes.

[Janet McClure]

Just wanted you to know that I was thinking about you and letting you know you are in my thoughts and prayers! Janet

[Laoshur]

Thanks, Mary for keeping us updated. I am praying that you finally get good results and help. I am not surprised that your "bronchitis" was chf as recent events have convinced me that many cases of bronchitis that I supposedly had for years were in fact at least primarily chf. One thing that I learned from a doc in Beijing is that any respiratory infection in people with heart failure often pushes people into full fledged chf, so the idea that you had something else going on first makes sense.

I would really want to know about the dobutamine thing to make sure that it is appropriate for your situation. I read about it online and it sounds like it might be the wrong med for you, but I am not sure of that. The reason I looked it up was because it was the dobutamine in a dobutamine stress echo that sent my heart into major problems. My situation is quite different from yours, but I would still want to check this out before I agreed to try it.

Rhoda

[Pam Alexson]

Mary , good luck with all the tests and treatment , keep us posted.

I am not surprised about the CHF. I had many trips to the ER, pcp after a nights of misery each time and was always told " bronchitis " or "pnemonia" even after xrays. In retrospect, specialists looking at my history and xrays do not believe it and one doctor did listen to me and gave me IV Lasix. Like you report , the flood gates opened. I also had the clear to white mucous and I did not have evidence of peripheral edema and only minimal crackles in lower base of lungs. I think it is more common for HCM ers to hold their fluid in the abdomen and more of a generalized edema picture. It seems this pattern until it is so bad and so much the whole lower torso also swells . After all those incidents , taking a regular dose of Lasix daily, having a myectomy and managing my CHF vigilantly has kept me out of acute CHF.

Hang in there Mary.

Pam

[shirleymahoney]

I have problems like you are having too they just up my lasix and what comes up on me is white and frothywhen i have bronchitis it turns yellow, I hope you get to feeling better, Isn't it weird that in the state of Virginia you have to be bed ridden to go on the list, I hope things turn out good for you and you are put on the list GOOD LUCK


Shirley

[Toogoofy317]

Thanks all.

Today so far has consisted of an Echo at about 7 this morning. I had had a really rough night. I got one of the absolute worse headaches of my life. But, this hospital is really on the ball during the night they have a PA and an ARNP so it was immediatly taken care of.

I also had a PICC line placed in thank goodness. They have drawn my blood six times since being here with a lot more to come.

I'm also due to start the dobutamine as soon as the confirmation x-ray of picc line placement comes back.

The doctor explained to me that we really aren't treating the HCM anymore. He called it decompensating heart failure. In other words my heart is not pumping hard enough anymore which is why I have fluid every where. They said that that is why my bp is so low. That the extra fluid and salt were the last things that I should have been doing. So, I'm on a 1500cc fluid restriction. At least until they can dry me out and see where I stand.

These guys seem really on the ball. A far cry from three years ago

Mary S.

[karen cicconetti]

I was put on doputamine when I was in the hospital waiting for my transplant. It is used a lot in people waiting for a transplant. I had a hard time with it so they lowered the dose to a pediatric dose and all was well. Anytime you have a question, ask them that's what their there for. I know a lot of people who are on doputamine at home and do o.k. Stay well and keep us informed. You are in my thoughts and prayers.

Karen

[NoCrash]

The PICC line will certainly get a workout during this stay! As far as blood draws, my personal record is 13 vials taken in one sitting when they were doing workups on me at UCLA. There were a number of blood tests taken after that (6 more vials worth) when they were running additional medical screening tests. (At least one of those tests was obscure enough that they sent the sample from California to the Mayo Clinic in Rochester MN to run it!)

Have fun??? (Good luck!)

Rob

[jmurray]

Mary,

Hang in there girl. It sound like you are getting totally worked over. :shock: I'm glad that it seems everyone is on the ball - that's always reassuring when you are in the hospital :wink:

Keep the updates coming and good luck with all the tests etc. to come

John

[Joyce Leinart]

Mary,
Just wanted to wish you good luck and tell you that I am thinking of you and hope everything turns out well for you.

Best wishes,
Joyce

[Toogoofy317]

sorry about the lack of a post yesterday. Wasn't a fun day to say the least! We started at about 7 AM with the Right sided heart cath. Not a fan of them going into my neck. Guess I might be a little clausterphobic cause I got anxious when they put all of the towels and dressings over my head. They also don't use any sedation which was probably why I was anxious

The docs told me though that my numbers were good. So, I guess that is a real good thing.

After being back in my room a whopping 20 minutes I was taken down for an abdominal ultrasound. That wasn't too bad just time consuming.

Next, was physical therapy and they started testing how strong I was how far I could walk (which was not very far). Needless to say I didn't do so hot and soon was in severe chest pain. One would think that would be enough but not here.

While still being in chest pain was sent down to the GI department. I guess the pain wasn't enough torture so they decided to stick a probe down my nose for 24 hours for yet another test

So, at that point I was in horrible pain with a tube down my nose. When they called and wanted to do a pulmonary function test. The nurse felt so bad for me she told them no it can wait until today.

Today is supposed to be a busy day as well. It's 10:30 and still haven't had anything to eat I'm starting to get cranky at this point. My stress test was supposed to be first thing this morning. I also had an episode in the bath room where I felt like I was going to passout. fun times

Mary S.

[Scott Stanley]

Mary,
Hang in there, I know they really like to poke and prod but the end result is worth it.

Some of the best advice I got when going through my evaluation was to stand up and fight for what you want, and that is a better life. If you can do that and show the docs you can, by following all the instructions they will believe in you and do everything they can to help you.

So my best advice is to fight for what you want but prove to them you are worth the fight. Hold your head up and also keep a good sense of humor.

Scott Stanley

[Linda]

Mary - Busy and cranky - I know it's tough, but hang in there. You're on your way! Linda

[Pam Alexson]

How are you doing Mary ?

Pam

[Toogoofy317]

Well,

On Friday they did the left sided heart cath. For the life of me I don't know why they didn't do it beforehand with the right sided. They said all of my numbers looked good. They also didn't think I have microvascular disease. So, they don't know what is causing my chest pain.

On, another note they called in the bad woman for a consult! When I saw her I wasn't pleased and that is putting it mildly. I stressed my displeasure with the doctor and he assured me she had no input on the decision making process or my care. He said she is the only one that knows alot about HCM. I had to bite my lip at that point. She had a dobutamine stress echo ordered to determine if I'm obstructed or not. The tech was quite cocky and was very rough my ribs still hurt today. I'm not even sure how competent he was he said you don't have HOCM you just have septal hypertrophy and that does not cause chest pain.

At this point my thoughts are "Dear God not this again!"

They have one more test to do and it can't be done 'till Tuesday and so I'm stuck here. But, I feel back at square one.

Mary S.

[Laoshur]

Mary,

Hang on! We are praying that this brings some good results for you. So let's keep hoping that this is just a temporary glitch along the path to a great answer.

Rhoda

[NoCrash]

Mary,

Don't know what to say except hang-in-there as best as you can. Perhaps these guys will get to the core of your troubles (they don't let too many dummies do heart transplants!)

Has Dr. Maron talked with anyone working on the team doing the evaluation?

We're still pulling for you to get through this!

Cheers,
Rob

[Joyce Leinart]

Hi Mary,
I just wanted to stop in and see how you were doing and tell you I am thinking of you and wishing you well. I am sorry to read you are having such a difficult time. Maybe all the testing will be over soon and you can go home for some much needed rest. Will you be finished on Tues after your last scheduled test or will you need to stay and wait on the results?

Sending best wishes your way,
Joyce

[Pam Alexson]

Mary ,

Hoping things go better for you and the answers are in line with an expedited heart transplant for you.

I add this little fact for you to remind them of symptoms of HCM ( taken right out of the information about HCM on this site)

Chest Pain

Chest pain is a common symptom. It is usually brought on by exertion and relieved by rest, but pain may occur at rest or during sleep and may persist. The cause of the pain is thought to be insufficient oxygen supply to the myocardium. In Hypertrophic Cardiomyopathy the main coronary arteries are usually normal, but the greatly thickened muscle demands an increased oxygen supply which cannot be met in some circumstances.

Hang in there .

Pam

[shirleymahoney]

Mary

Girl you hang in there and don't let them get you down you know better and like Rob said they don't let dummies on the transplant team and besides that you have Dr. Maron on your side now and you are still in my prayers

Shirley

[AliBear]

Mary,
I know all the poking and proding can get very fustrating. YOur doing great! thank you for the updates, we are thinking about you all the time. Being in the hospital is tough work, but try to keep the end result in mind.... You'll be doing all the things you dreamed of doing before you know it. Keep your spirits up.

Ali

[angall]

Mary
Please don't let things get you down. Take a stand and hang in there.

You do have a very capible doctor in charge and I'm sure he'll take whatever measures it takes to find out your problem.

BYW..I do look for updates from you. Thanks for sending them.

Take care

[Debbie]

Hi Mary,

Don't let them get you down. I hope that they will finally get all the testing they need to do over with, and then youll know exactly where you stand. That's a good thing.

Pulling for you!

Debbie

[Eileen2345]

Mary,

I repeat what everyone here is saying..... hang in there.

And like Shirley said, you have Dr. Maron on your side.

You are in my thoughts and prayers. I am wishing you the best regarding this.

Hugs,
Eve

[Largehearted]

Mary.

I can't imagine how difficult your experiences have been. I am so sorry you have to go through this. I too will pray on your behalf.
Peace,

Leon

[Toogoofy317]

Thank you all so very much. It means the world to me.

Yesterday was the manometry test where they stuck a tube down my nose and it took a hour for them to slowly bring it out. Test was negative.So, the GI is clear.

Today I a shiney new Guidant. The arm is sore but it went well. Supposed to get out tomorrow. hopefully they will let me know what's next

Mary S.

[shirleymahoney]

Thanks Mary

I was starting to wonder what was wrong glad you are getting to go home make sure you keep that arm down ok

Shirley

[angall]

Hi Mary

At least yesterdays test was positive.

Take it easy for a few days. Hopefully you will know more tomorrow.

Keep us posted.

Take care

[NoCrash]

Great to hear you made it through the week+ (too bad about your holiday weekend). You certainly have been through the wringer--more than most, I suspect.

You probably already have this worked-out, but I'll be redundant and say: get and keep copies of all those test results!! One of the nurse practitioner's or an admin assistant can probably help out getting copies made for you!

Cheers,
Rob

[Dolly (Andrew's mom)]

Mary, I just finished catching up on this post and I am so sorry to read what all you have been through!!! Stay strong! You are in my thoughts and prayers.

[Laoshur]

Mary,

Wazzup? We haven't heard an update. Please let us know how you are doing!

Rhoda

[jmurray]

Mary,

I was just thinking the same as Rhoda today. Are you back from testing?? Let us know how you are doing and what you found out. I'm thinking of ya!

Best wishes,

John

[angall]

Mary
I too have been checking the message board for an update. If you can, please let us know how you're doing.

There are so many people here that cares about you.

[shirleymahoney]

Ok Girl

Where are you? We miss you around here, Please let us know something


Your Friend

Shirley

[angall]

I find it very strange that we haven't heard anything from Mary in quite some time.
Does anyone know how to get in touch with her?
There are many of us here that are worried about her and would like some kind of update.

Thank you and take care

[mtlieb]

Mary and I spoke on the phone today...

She's still in Gainesville but should be leaving for home soon. Sounds like she's had one heck of a wild ride since she last posted, but she's doing okay now and looks forward to posting to the board when she gets home tonight.

Jim

[dreamcatchinglady]

Mary,
You are a strong lady. Us with Hcm and are waiting for transplants we keep the faith and one day we are going to achieve all we want. Stay strong and one day we'll tell stories. We could all write books about our experiences. My thoughts and prayers are with you.

[angall]

Jim
Thanks for updating us on Mary's hospitalization.

I know Mary has been having medical difficulties while she has been hospitalized.

Please tell Mary we are thinking and praying for her.

[Toogoofy317]

My apologies to all for proverbialy falling off the face of the earth. What a week it has been.

Just the day before I had gotten out I had written a long post about what they said at Gainesville. Unfortunatly, before I could post it the nurse accidentally pulled the power cord out of the wall. My shoulder was hurting too badly to retype it. Murphy's law I guess.

Anyway, I was told that I was not a candidate for transplant nor will I ever be. I was also told that in no way that my HCM was causing my symptoms. I asked the PA what the next step was. She told me that that was none of their concern. They were only asked to determine if I was a transplant candidate and the answer was NO. I had never been treated so indignantly even my roommates family said she was really harsh! I can't remember a time when I had been as upset as I had my heart rate went up to 160 the nurse ran in wondering what had happened. She too became upset by the way I was treated.

So, the next day they sent me home. I was still feeling quite ill and very dizzy. When I was packing my stuff I bent over to pull out my modem line and got so dizzy I fell on my hind end. The nurse was very worried with this (the nurses were some of the best I had ever had) but the docs said I was ready. My roommate was extremly friendly while I was there and her family was equally as nice! They offered to let me stay the night. I told them I would be ok on the over two hour drive home. They insisted I take their number and they gave me a few bucks to pay tolls because I could not access my paycheck at the time. I was very greatful for their help and took off.

I only made it a couple of miles by the second red light my head was spinning so bad I almost passed out. I inched my car back into the parking lot. With no money and so far away I did they only thing I could. I called their number. They immediatly came and picked me up and took me and their car to their home about a half an hour away. My thought was I would at least be ok to go the next morning. I attended church with them and became so weak that they brought me back and I struggled a few hours their with the dizziness and chest pain until they took me to their local hospital.

My troponins were quite high and my bp was 80/60 so I was put into ICU for a couple of days. The cardiologist there read UFs report and started echoing them because he hadn't seen IHSS since med school. He was at least 60. So, I started telling him about Dr. Maron and how UF refused to speak with him. He said fine I will call him and speak with him tomorrow so he got the phone number and he called HIM! His tone quickly changed and he did some research and he and Dr. Maron agreed on ECP therapy. So, I stayed a few more days because I was having all sorts of other problems too. Like, an eye infection, bladder infection, and severly constipated to the point I could not eat. One thing this cardio said though was don't believe that people have given up on you. Your Dr. in Boston hasn't and I won't either. Please keep in touch with me and I will try to convince your insurance to cover this treatment.

I was released on Friday. Still, too tired to drive home so I stayed with this wonderful family until today. They took me in with open arms and made me feel welcomed. I went to their church once again today and was so moved by the caring of all of the people who didn't even know me. That I became baptized today because I was ready to start again and knew I could not do it alone.

So how is that for a week? Wonder if I should still write that book?

Sorry about how long it was but all needed to be included!

Mary S.

[Donna]

Mary, I am glad that God put you in the same hospital room with this Godly person. You now have a new start on life and a new family.

I think all things work for the best most of the time. I looks like you also got a new doctor at the same time. I am glad you got home and hope that things will start going good for you.

Remember that you are in our prayers and thoughts. Yes, I think you should get that book on paper soon as you can. I think you are an inspiration and a good person to look up to. You just never give up, more of us need to be like you. Take care and have a good week.

[Laoshur]

Mary,

What an amazing story! I am thrilled that you found people to love and care for you during such a difficult time. I know that God was also loving and caring for you through all of this.

Please know that we are all really glad to hear from you and are cheering you on to a happy ending to that book!

Rhoda

[Reenie]

All I can say is Wow! :shock: I hope that you continue to fight to get the treatments you need. God bless the family that took you in!

Reenie

[angall]

Hi Mary
It's so great to hear from you.

I'm glad you found a family that helped you when needed. There are so many gracious people on earth. Sometimes they appear from no where.

Take care

[Largehearted]

Mary.

I am happy you found such great people and will pray that your continued faith journey will bring you much peace.

Leon

[Toogoofy317]

Thanks to all for your kind words.

I guess the only question is "What do I do now!?!?!"

Mary S.

[NoCrash]

Mary,

What can you do?

Make sure you get copies of ALL the records from Gainesville. Try and get records from earlier run-ins there, too.

Share the Gainesville records with Dr. Maron, and possibly the doc you mentioned in your other post who helped you when you left Gainesville.

(I think you may have done the above items already, based-on your earlier post.)

Keep plugging on the disability claim. Make sure you have records from Dr. Maron to help support the claim. Make sure they are evaluating for cardiac-baed disability based-on the cardiac test results.

Did you do a cardio-pulmonary exercise (stress) test at Gainesville? If yes, those results are possibly critical to your disability cause. May I ask what the results were (by PM) if you have them?

FWIW, my local cardio specifically referred me to Dr. Nish because, he said, "Dr. Nishimura is able to communicate well with patients, unlike some other well known cardiologists".

Oh. One more thing. I think I said something about "they don't let dummies do transplants." I've been known to be wrong, before, too.

Still pulling for you!
Rob

[NoCrash]

Mary,

I've been thinking some more about "what to do now". A few random thoughts have occured that might be worth discussing on the board (I don't claim that any of these ideas will necessarily produce any real results).

With respect to insurance: it appears you have conflicting diagnoses from NEMC and from Gainesville. I don't think the insurance company should be allowed to pick the one the prefer. Another opinion/further testing (if needed) is warranted for that reason, alone. You might be able to use this rationale to support your argument for further consultations or, if need be, in an appeal.

I think you need to find a Florida-based doctor to be a champion for your cause? I know you've seen various docs (some of whom sound really evil), but does Lisa have the name of anyone in Florida that your insurance will accept that has already established some working relationship with one of the major HCM centers? Is there anyone now in Florida trained in the HCM department of one of the centers?

Try and obtain a tape (or CD?) of the echo that was performed by the incompetent in Gainesville. The tape can should be reviewed/critiqued by a competent cardiologist who can then identify/list deficiencies in the exam. This list should go some way (I'd think) towards discrediting the results of the Gainesville evaluation with your insurance company.

Be well,
Rob

[Toogoofy317]

Thanks Rob for being my brains right now!

You have come up with some really good ideas. I've all but given up on finding a local cardio that has a heart (maybe in Florida they have to sacrifice theirs in order to get the cardiology fellow).

I did give a call out to Lisa today. No call back as of yet. I'm guessing Monday.

I'm honestly thinking of going back to Boston and see what they think. Unfortunatly, (see godsquad post) my friends up in Boston just lost a parent and things are very chaotic for them right now. I also have school to worry about now and a job which I don't know how much longer they are going to keep me.

I am thinking about trying the cardiac rehab though. Maybe it will give me a little more stamina.

We'll see. Thanks Rob again.

Mary S.

[Pam Alexson]

Mary ,

Sorry to hear things have not been going as expected during your evaluation process. As I have never been through such a process I can only imagine the magnitude of it physically and mentally. So take some time to relax regroup your efforts and then proceed.

Rob gave some very good advise, when you get all rested up , set about to get all your records from everywhere you have been ( sounds monumental ), but a most possible endeavor. File everything categorically in time sequence order. Be sure to tab things so they are readily accessable and if you are able, make a second copy of these records for safe keeping. The best way to stay on top of this process ( ongoing ) is to not let too much time go by as we tend to forget or put off what we need to do.

Once you have all your records , you will have all the information necessary to make a plan and proceed. It is very important to share the evals and such with your doctors and keep them all on the same page.

I think you will find that many here have had a runaround at some time or another with regards to the management of their HCM and evaluations.

What has separated my brothers confused diagnosis and treatment regime of his HCM from mine is that he goes to a lot of different doctors for different things. He gets different meds and does not clear them with his HCM doc and he goes to the ER( various ones) for his chest pain and I do not. I do not corner the market on HCM management and know that it is different for us all. I deal with chest pain daily and it aint pretty by any means. However I am confident with what my HCM specialists tell me. The chest pain is due to the microvascular nature of these vessels that live in our thickened hearts. As these vessels struggle to take in a share of what they need to survive, they are still shortchanged. I wish they would tell me that it will go away and I will return to normal but, it is not so. My brother does not deal well with this explanation and always fears that he will succumb to a heart attack. He has been told that his large vessels , like mine are generally clear , that the odds of having a heart attack are next to never and that he just needs to step back. What my brother does do is get anxious and this compounds his symptoms. He also hikes through woods , takes his riding mower down the power line , tips it over on himself, breaks 2 of his ribs and takes lots and lots of other risks everyday of his life. This would be fine if he did not do a lot of harm to himself in the meantime but he does and it also takes a huge emotional toll on everyone around him.

I do not like living with restrictions or finding out that an activity I have chosen has to stop but , it is how we , some of us HCMers have to live . I am sorry that this is a fact. On the good days we can think less about our shortcomings and count the positives . On the bad days it can get very glum .

There is no magical fix , just life as a person with HCM. Please know that you are not alone and we all think of you and wish the road of HCM were less harsh for you. Hang in there and gather your resources and revisit a plan when you have rested.

Pam