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#3799328 - 06/20/13 11:51 AM Re: I'm Dying [Re: Destructis]  
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I agree with you and do live each day. I am also planning for the worst at the same time. That includes passing off some responsibilites such as paying the bills for the household. I would much rather someone else understand the timelines and bill payment procedures since I do everything online. I can't remember the last time I wrote a check for a bill.

I am also finding that I am harder on people in the house. In the back of my mind I know that people learn stuff at their own pace and through trial and error. I need for my daughter to grow up and take responsibilty for herself. She is hooked on pills and am working towards getting her treatment. I know it's not my fault and she made her own choices so there is no guilt on my part. I can't do anything about that. What I can do is push her to get help by cutting off some financial things. She isn't going to get the real help she needs until she hits bottom. I think she is close to it. She is 23 and has a loser boyfriend who is 27. She is also on probation at the moment. I am pushing her pretty hard right now because I don't know when my time will be up and I want her to have a good life. That's up to her though.

My son, who turns 22 next month, is pretty responsible most of the time. He tries to save money and has been working the same job for about 3 years now. Every once in a while he does one of those WTF things. Two weeks ago he spend $170.00 on a pair of sun glasses...LOL. IF that's the worst I have to worry about with him, he will be fine.

I am not sure if pushing harder is the right thing to do or not, but if I don't do it now, what happens if there is no tomorrow to do it.

I just hope that I am doing it for the right reasons. Am I doing it because I am frustrated/scared of being sick, or am I doing it for the right reasons. I am not afraid of dying, I am afraid of leaving those behind who still need my help.

I can't save the world, but dammit saving just a little piece of it would help.

When I started this thread a while back, I promised myself that I would be honest in it and I feel as though I have been. Even when I am unsure of my own motivations.


Life is tough. Life is tougher when you are stupid. - John Wayne
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#3804911 - 07/04/13 01:17 PM Re: I'm Dying [Re: Destructis]  
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I had the meeting with the Vascular Surgeon yesterday. He impressed me more than any doctor ever has. He has some office hours in Ellicott City on Wednesdays. I really hate driving into Baltimore, so I chose the Wednesday appointment. I get there about 20 minutes early figuring I was going to have to fill out insurance paperwork, medical history, all the typical crap you have to do when you see a new doctor. The receptionist asks my name and I tell her and she said, you are here to see Dr. Sarkar? She goes back to tell him I am there. About 5 minutes later, he comes out and introduces himself to me and asks me to come back. None of the doctors I have seen before comes out themselves. A nurse normally takes me back and says the doctor will be right with me. Then I sit the normal 10 to 15 minutes waiting.

He takes me right into the exam room and starts talking to me. He asks questions, I answer and if the answer isn't clear enough for him, he asks for more information and lets me know what he is looking for and way. He starts checking me out, checking the pulse in my feet, arms and then starts pressing on my stomach. When he did that, he said I am looking for an embolism (probably butchered that). To most doctors, I feel like a body part they are examining and not a person. He seemed to see me as a whole person.

The he talks to me some more and tells me Dr. Jackson called him and sent him a letter along with all of my medical information. He asked questions about when I did the stress test and asked if my leg cramped up or my breathing started to give out first. I told him it was about the same time. He said he could do the surgery, but he didn't think it was necessary right now. It would stop my leg from cramping up after walking a distance, but because of the my breathing, he didn't see it increasing my distance that I could walk without discomfort. He said I am not in any danger of losing the leg or anything. He did say there are always risks with any kind of surgery. We talked about how he would do it, which is basically the same way they do a cardiac cath if you have ever had one. The go in through the artery in my right groin and run the line to the place they need in my left leg. Angioplasty which is basically blowing up a balloon to open it up and clear it out and then put a stent in.

He said that because of my diabetes plus the reduced blood flow to my left foot, that I am very susceptible to an infection if I ever cut my left foot. If I do and see any type of infection at all or it's not healing, to call him anytime. He said he would like to see me again in 3 to 6 months, but if anything changes at all, that I can call and he will see me right away. I mentioned that I concerned because when Dr. Jackson gave me his business card, that he wrote Dr. Sarkar's cell number on it for me too. He said he did that in case I ever need him. He told me I am free to call the cell anytime I feel it is necessary. He said he is going to call my cardiologist tomorrow and then send him a letter to follow-up. He would send the same letter to my Primary care an Pulmonologist also.

As I am leaving, I stop at the receptionist and ask if there is anything else I need to do before going. She said nope. I asked if there was any paperwork, insurance information, release to charge my medical insurance or anything else. She said no that I wasn't being billed for it. That pretty much blew me away.

His title on his card is:

Univ of MD Medical Center
Professor of Surgery
Chief, Division of Vascular Surgery

So this guy is pretty high up on the food chain there. He also did tell me while we were talking that if we did do surgery in the future, that he wanted me to come there to him. He said "we are a research and teaching hospital so we get all of the best new stuff as it comes out".

I honestly have never been as impressed with any doctor as I am with him. I really wish he did more than surgery because if I could go to him for everything, I would. Definitely a very good appointment.

My next appointments are my first with the Kidney specialist on the 10th and then back to my pulmonologist on the 17th, my Primary care the 24th and then the cardiologist again on Aug 13th.


Life is tough. Life is tougher when you are stupid. - John Wayne
#3804915 - 07/04/13 01:31 PM Re: I'm Dying [Re: Destructis]  
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That is some level of assurance isn't it ? The confidence inspired by someone who is competent and really interested changes your whole outlook.

Hoping for the best for you.


Good people sleep peaceably in their beds at night only because rough men stand ready to do violence on their behalf.

Someday your life will flash in front of your eyes. Make sure it is worth watching.
#3804920 - 07/04/13 01:42 PM Re: I'm Dying [Re: oldgrognard]  
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Hang in there man. thumbsup

Been following you thru all this, and continue to wish you and yours my best.

Sounds like a REALLY good Doc.

I am lucky that my mom's hospice nurse, who I interact with on an almost daily basis is cut of the same cloth. Someone who exudes competence and is truly caring/concerned makes a big difference in diffricult situations.


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#3804929 - 07/04/13 02:08 PM Re: I'm Dying [Re: Destructis]  
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When you're ill and meet a compassionate physician/surgeon/medical team, seems that you can feel you did a step towards recovering your health, aren't you ?


"Anyone can shoot you down if you don't see him coming but it takes a wonderfully good Hun to bag a Camel if you're expecting him."
Tom Cundall.
#3804934 - 07/04/13 02:30 PM Re: I'm Dying [Re: kaa]  
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Originally Posted By: kaa
When you're ill and meet a compassionate physician/surgeon/medical team, seems that you can feel you did a step towards recovering your health, aren't you ?


It really does. It was one of the few times leaving an appointment that I felt uplifted, for lack of a better term. I am not going to lie, even though I try to keep my humor and level attitude through all of this, many times I leave an appointment feeling down. Nothing has changed, but yesterday I felt pretty good. It's why I didn't have a problem using his real name and where he is at.

I really expected to go in and have him try to talk me into surgery even though my mind was half made up not to have it. After meeting him and at the end had he recommended it, I would have said yes. I trust him and with a doctor, that is huge. You can't put a price on that.


Life is tough. Life is tougher when you are stupid. - John Wayne
#3804946 - 07/04/13 02:57 PM Re: I'm Dying [Re: Destructis]  
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That's why he is where he is. Of course, that's also why he can't be your "everything" doctor. smile



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The anteater is wearing the bagel because he's a reindeer princess. -- my 4 yr old daughter
#3805051 - 07/04/13 07:15 PM Re: I'm Dying [Re: Destructis]  
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Interesting...

I'm glad you're having that rapport with the doctor. Your case must be unique in some way. The team's experience in treating you will probably assist others with similar afflictions in the future. Sometimes, that's the only good thing to come out of a scenario like this.

Good luck, Destructis.

edit:

Oh, and I realized that it's been over a year since the first post on this thread.

You're doing pretty well. Thank God that it wasn't stage IV lung cancer...

One more thing...

Have you sat down and told your children about your health situation with the full consequences of it? It's your choice, but many of the patients and families had regrets that were directly related to not being told how little time remained.


Last edited by shan2; 07/04/13 07:28 PM.

You're only young once, but you can be immature forever.
#3805120 - 07/05/13 12:04 AM Re: I'm Dying [Re: Destructis]  
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Originally Posted By: shan2
Interesting...

I'm glad you're having that rapport with the doctor. Your case must be unique in some way. The team's experience in treating you will probably assist others with similar afflictions in the future. Sometimes, that's the only good thing to come out of a scenario like this.


Yep it's been 8 months to the day of the first post. Had you not mentioned that, I wouldn't have gone to look. I have sat down and talked to my kids about the pulmonary fibrosis. I told them what to expect in the future. I even brought it up again with my son since he wants the Husky (see the dog thread). I told him that the walks and stuff are all going to be on him because I can't do that anymore. I go maybe 100 yards and then start having problems. The important people at work know, but they all know I don't want others looking at me like I am already dead and be the topic of gossip. No one at home knows about the heart stuff and I am going to leave it like that. They worry enough about the fibrosis, why add another thing to it. They do know that it could happen slowly or very quickly, it all depends on how and when it progresses. People at work know about the heart too. The rest of my family knows nothing about any of it. My mother is 72 and worries about my younger brother all of the time, no point in having her worry about me.

To answer what I quoted, I felt/feel the same way. I did talk to the vascular surgeon and said that with the all of the personal stuff they are doing, that I am concerned about my life expectancy. I mean why else would a top surgeon tell me to call him on his cell if I needed anything? He said that I could live another 10 years with the heart problem. So I left it alone.

I do feel the same way you do Shan, with all of the personal care going on, there may be something more that I am not aware of.

Quote:
You're doing pretty well.


I am doing pretty well so far. I am still not on oxygen. I am able to go to work every day. Well most of the time. There are some days I don't have enough energy to even get out of bed, but it's about once every 3 to 4 weeks. They know I go in when I don't feel well too. I have good days and bad days. They figured me out at work, when I am really quiet, it's one of the bad days. My boss told me that he almost sent me home on some of the bad days, but didn't because it was my choice. They are still really great about this whole thing and I am keeping them informed. There are people at work who don't know, who have been asking if I am ok. Sometimes they ask me or ask my boss. I really can't hide the weight loss and having to leave in the middle of the day for a doctor appointment. The answer to them is always, "I am trying to lose more weight to help my diabetes" and they usually accept that. In the last 9 months, I have lost about another 50 lbs.

I can't do much of anything physical. I tried cutting the grass the other day and didn't get far into it at all before I had to quit. I over did it and it caused a coughing jag that was really rough. So now I just try to be really careful in what I am doing.


Life is tough. Life is tougher when you are stupid. - John Wayne
#3805139 - 07/05/13 02:05 AM Re: I'm Dying [Re: Destructis]  
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I can't help but be curious as to what treatments/procedures they'll recommend in your near future.

There are many "elite" teams of medical professionals who normally turn away routine cases because they don't provide a worthwhile challenge that results in some kind of recognition in the case of successful treatment. On one hand, their patients have nearly limitless resources being applied to their care. On the other...they really do need it.


You're only young once, but you can be immature forever.
#3808245 - 07/11/13 10:39 PM Re: I'm Dying [Re: shan2]  
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Originally Posted By: shan2
I can't help but be curious as to what treatments/procedures they'll recommend in your near future.

There are many "elite" teams of medical professionals who normally turn away routine cases because they don't provide a worthwhile challenge that results in some kind of recognition in the case of successful treatment. On one hand, their patients have nearly limitless resources being applied to their care. On the other...they really do need it.


I am sitting here stunned. The vascular surgeon just called me on my cell to see how I am doing. He said he was getting caught up and couldn't remember if he told me he wanted me to have a CT scan or not. He didn't to answer the question. He remembered everything else and said "the girls are all gone now, but I will have them call you tomorrow to set up an appointment"

Seriously, this guy is pretty far up the food chain at Univ of MD hospital. Shan, I am like you now in beginning to wonder what is going on.

I saw the kidney specialist yesterday and it was nothing. She gave me a prescription that will help but I am hesitant to take it until I talk to my cardiologist. I left him a message at his office today. The script she gave me is also use to lower blood pressure. My blood pressure yesterday was already 120/68 and with the low injection fraction and congestive heart failure, I want him to approve it before I start taking it. Then she said to make an appointment to come back and see me in a year. So yeah, I am not concerned with the kidney stuff right now.

It was also funny when I was talking to he kidney specialist. We were going over my medical history and she didn't say a lot about the heart problems, but when we got to the pulmonary fibrosis, she looked shocked and alarmed, then asked if I am on a transplant list now. It was kind of surreal to me.


Life is tough. Life is tougher when you are stupid. - John Wayne
#3808257 - 07/11/13 11:11 PM Re: I'm Dying [Re: Destructis]  
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So, good wishes and prayers do help. Pulling for you man.

#3808312 - 07/12/13 02:51 AM Re: I'm Dying [Re: Destructis]  
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It does seem like too many doctors don't fully review your total history, and what other medications and treatments you are taking. sometimes they seem totally distracted and appear to be more concerned with covering their tracks than treating you.

you are on my prayer list too, and I am a most persistent rascal.


Have you seen the Arrow? WWW
#3808394 - 07/12/13 11:24 AM Re: I'm Dying [Re: coasty]  
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Originally Posted By: coasty
It does seem like too many doctors don't fully review your total history, and what other medications and treatments you are taking. sometimes they seem totally distracted and appear to be more concerned with covering their tracks than treating you.


I think I have been pretty lucky with my doctors. The vascular guy and the cardiologist both spent a lot of time talking to me and asking questions. I felt like they were both really listening. I don't feel like either of them have just wrote me off.

The pulmonologist did at first, but he seems to really only want to look at my test results anymore. I go in and take the breathing tests, then they shuttle me into his office and he is looking at the results as he is talking to me. I don't feel like he is actually listening to me though. He is multi tasking. Instead of asking questions to get information, it's just one question and asks if there are any new symptoms. My feeling is that I have so many things wrong with me, I don't know what is a symptom of what anymore. I am thinking about switching pulmonologists but have to figure out how to go about it. I see him on Wednesday and I will probably make a decision after that visit.

I am happy with my primary care doctor. She answers my questions and if she doesn't know the answer to something, she says "I don't know". When I asked her if she wanted copies of my Pet/CT scan dvd's, she said it would be pointless because she doesn't know what she would be looking at and how to read it. I am good with that.


Life is tough. Life is tougher when you are stupid. - John Wayne
#3808463 - 07/12/13 02:28 PM Re: I'm Dying [Re: Destructis]  
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Murphy, I'm late to reply but as the topic is still going... I too had some blood when coughing last year. It turned out to come from a chronic sinus infection (from my allergies) and maybe also from teeth/gums. Nothing serious at all. Hope it comes out the same for you.

Destructis, happy to hear you found a Doc that is competent and on the ball. It does make all the difference.

#3808984 - 07/13/13 06:07 PM Re: I'm Dying [Re: Destructis]  
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Well...you may as well get a new CT as soon as possible for your medical team. I wonder how many organs they'll try to replace at once. (Just kidding...kinda...)


You're only young once, but you can be immature forever.
#3809342 - 07/14/13 02:14 PM Re: I'm Dying [Re: Destructis]  
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Just to follow-up on concerns about my Pulmonologist.

Friday morning about 10AM, I sent Dr. Sarkar an email explaining my concerns with my Pulmonologist. It wasn't a long one at all, and I asked him if he could recommend a good one for me. Dr. Sarkar emailed me back at 7:30 PM. This is what I got.

Quote:
Ken,

Dr. Iacono from pulmonary medicine at Univ. of Maryland will be contacting you for an appointment.

regards,


Two minutes later, I got this email.

Quote:
Nina please schedule Mr. Ballengee for Tuesday appointment with me. Thx. Aldo


I was going to wait until Tuesday evening after I see the new Pulmonologist to post in this thread. But after reading the latest post from Shan, I decided to do it now. I will post again on Tuesday after the appointment with my initial impressions.

You know me by now, and that I look up everything. So I looked up the new doctor on the Univ of MD Medical Center website.

http://findadoctor.umm.edu/Details/23563?index=1&setsize=50&specialties=750

If anyone is interested, go to the link and look around. He has a video off to the right of the page. Shan, I know you would like the video, for others it's worth looking at. I suggest going full screen.

This is his interests


[*]Aerosolized cyclosporine as anti-rejection medication
[*]Preventing complications of lung transplantation

Department - Lung Transplantation
Medicine: Pulmonary and Critical Care Medicine

The reason I have started using the doctors names is I don't want anyone to think I am full of #%&*$#. It's all real and easily verifiable. I know this is a strange thread topic and the flow of it has been pretty spotty. It's like there are times nothing is happening, and then everything happens at once and the thread gets busy again.

Well anyway, my strong suggestion is to go to doctors page and watch his video full screen.

Here is Doctor SarKar's page.

http://findadoctor.umm.edu/Details/23420?index=1&specialties=708


Life is tough. Life is tougher when you are stupid. - John Wayne
#3809479 - 07/14/13 08:12 PM Re: I'm Dying [Re: Destructis]  
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Don't worry about posting the doctors' professional information on the web. They're more than used to it.

I'm just wondering what the heck they're going to try to do to you. That's an awful lot of specialties being brought to bear on a single patient.


You're only young once, but you can be immature forever.
#3809539 - 07/14/13 11:09 PM Re: I'm Dying [Re: Destructis]  
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That actually concerns me a little bit. It does sound like the cardiologist and vascular surgeon want to point me towards a transplant. They know about the diabetes and the IPF. The other odd part to me is that the cardiologist didn't prescribe any medicine for me. From what I read, the low left ventricular ejection fraction and the congestive heart failure are normally treated by drugs.

I doubt I will know any more than I do right now after Tuesday's appointment. I am betting on either another Pet/CT or just a CT. If they are considering a transplant already, then it I am betting on the Pet/CT.


Life is tough. Life is tougher when you are stupid. - John Wayne
#3809541 - 07/14/13 11:24 PM Re: I'm Dying [Re: Destructis]  
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You wouldn't have liver damage, would you? A heart, lung, and liver transplant would be something for the books... exitstageleft

But seriously, if they're moving around people's schedules to deal with you in that manner...you may be worse off than you think.


You're only young once, but you can be immature forever.
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