Tag Archives: Medical

11 Months now On TPN. Not doing so well.

It has now been 11 months since I started back on TPN. After a string of really bad bacterial infections they started to use my port for everything. Well I guess the port did not keep out the infection or it was never cleared to begin with.

About two weeks ago I got super sick again. I would have going to the ER the night before, but in all honesty I did not know how bad off I was. By the time my home health care nurse and her supervisor got to our apartment, I was not coherent and my fever was over 105. I was hallucinating and just not in good shape. My heart rate was erratic at best and I was floating in and out of consciousness. The nurse told my hubby it would be a huge risk for him to try to take me on his own. So they called 911 and asked for a special ambulance with cardiac equipment.img_20150807_105514

I am guessing it took them hours to bring down my fever and to get me stable enough to move me to a monitored room. One step down from ICU. After a few days I was moved to a regular floor and they put in a new PICC like for the TPN They wanted to take the port out right then, but my blood numbers were still not where they should so they were going to wait till end of weekend.

Then I found out they were going to do lung biopsy day after I got home the port removal next day. I kind of told them to go to hell. I was still/am still recovering from this horrid blood infection. I am sure my Dr.s are not happy with me, but I have good reason. The dr who was going to do the biopsy is not even board certified. That to me made NO sense. With my history with procedures and things going sideways fast. Just not a good idea.

I will see my regular dr today in hopes he can get me someone with the credentials to take the port out.

I have about 1/2 a dozen or so tumors in my lungs that need to be taken out. I am not happy about the fact that Kaiser is going to be doing it. I am scared, last time was just one tumor and the surgery went sideways at the end. This time we are dealing with so many more. It just scars the crap out of me.

So I should do a bit more of an update on the family front. PA started having seizures again. So she is back on medication. We are having to home school her and this is NO walk in the park. Shann was easier to home school by far that PA is. Oh My Heck this child is worse than her sister ever was.img_20150619_173119

We have tried it now for several months now and we need to go back to regular school. She just is not doing well and is so hard on me. I am spending so much more time in bed I just can not keep up. Then the house work. I keep falling so far behind I use to keep a very clean house. Now on a good day I can hardly just keep it picked up, let alone clean.

OH!!! The best news of all!! My oldest daughter Shannon and her Husband David are expecting. Due date is July. I am excited for then, but I am not sure if I am ready to be an Oma img_037988

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The feeding tube weirdness continues

A couple months ago I had to have a feeding tube put in, because my body was not processing food the way it should. I was loosing weight and very sick just from eating and drinking simple foods. All a result of the cancer I have.

Now not every Neuroendocrine (Carcinoid) patient has the same journey because we all are as different as zebras with their stripes. The first procedure did not go smooth at all from the start. Just when they were trying to put in the tube the first one busted and I had to have a second procedure to have it replaced. Then when they were introducing formulas the tube did something they almost never do (I guess a one in 100,000 chance) it curled back up into my stomach, and I was throwing everything back up. They had to secure it in my lower intestines. After a few days they sent me home.

Now things were progressing fairly well. I was able to do it at home on my own. Of course I was still having difficulties keeping weight on and was loosing weight. Not too fast so at least my regular Dr. was not to concerned at this time. I was getting to a more normal weight and I sure did not mind either.  This continued for a month or so and I think I lost another 20 pounds or so.

Then my tube stopped working it clogged over night. I woke up one morning to a puddle of formula next to me. I called my GI doctor and went back in to the hospital to have the tube replaced. Ended up it was knotted.

WP_20151026_16_14_33_Pro [224851]This is a picture we got from the doctor. It is from the inside of the knotted tube. Pretty wild.

Now this was something my doctor had never seen. I ended up staying several days as I had become very ill and dehydrated very quickly. When you depend on everything coming from a feeding tube you wear for 18 hours a day. When something goes wrong with it sometimes it takes a few days before you realize there is a problem. By that point you can become very sick very fast.

Like I said the doctors had not seen this before so another 1 in 1,000,000 chances I guess. This stay was a nightmare though. I had some really awful dr.s. In fact I had one close to my last day tell me he did not know why I was on a feeding tube or why I was getting so much pain medicine. He told me that evening that he cut me off. I spent that night in so much pain and did not see a nurse until the next morning. I then found out the doctor did not stop my meds at all. For this I am filing a formal complaint along with two others. So I really can not go into much detail. That however gives you a little detail into how bad that stay was.

That same stay our little blue car finally up and died. catastrophic engine failure. So now we are renting a car we really can not afford till we can get out van back on the road. It has been sitting at a friend’s house for 20 months on a non op because it was so expensive to drive around. Also because the fees and smog were so pricey now.

So I came out of the hospital on Wed. 2 days ago. I went to hook up to the pump to do my first feeding and sometime during the night the pump turned off and the tube clogged yet again.

Yes, I know this is getting old. So I called my GI again. Because of what happened the last stay I was going to wait till I heard from him. So I waited. He got back to me and said he could have me come in Friday. The day of our churches trunk -or-treat. This is PA’s Halloween as we do not go door to door with her because of her autism it is too over whelming. I asked if there was any way he could do the replacement and I could be home in time for the party? He was reluctant given my history, but figured out a way.

I went in early afternoon and had the procedure done with no sedation. Yes you heard me right.. NO sedation…. It was not fun and yes I did pass out once or twice, but I was home in time for the party. When we got home it was a mad dash to get ready. I got the back pack ready went to hook up the feeding tube so I could take it with me and I could not get it to work. OMGOSH!!! This was truly a nightmare.

So this is now my fourth tube and not even hours old and it not working. We got to the party and I spent the first 20 minutes on the phone trying to get ahold of my doctor again. Realizing he was gone for the weekend. So now we were planning on making another trip back to hospital after the party.IMG_20151030_185126 [232925](PA as a ghost princess.)

When we got home I decided to try one more time to get the tube to work. Just maybe it needed a little time? I tried a little coke because funny enough when you have a clogged feeding tube they try flushing it with coke to get it un clogged. It worked. I have spent most of the night keeping an eye on it, because I am a little afraid of it deciding to not work again. Also though because there is so much stress right now with the wedding so close now, the car that has now died and trying to get the van on the road. I am beyond stressed that I can not sleep.

Which really sucks. If ever we could use a miracle it’s now…..

 

The day I broke down in the Dr. office

 

I was at the doctor a week or so ago, after being in the ER for the third time in less than 3 weeks. My regular GP really is powerless to help me with my cancer symptoms and some of the problems that go along with it. He tells me he wishes he could help me more, but it is above his pay grade.

We have a pretty good relationship and kid around quite a bit. After all there is very little he can do for me and I know it is frustrating to him as well as myself. When we were done he asked me how I was really holding up. As per my usual I blurted out “I’m fine, I get up every morning like every other mom. I take care of my special needs child as well as my husband and older daughter (whom is getting married next month). I have a lot on my plate to say the lease.” Then I started to cry.

His response was to tell me not everyone could do what I can and carry it off day after day,and how strong I am (I don’t agree really as I am just doing what any mom would do. In my mind).  I don’t have a choice. I can’t  not get out of bed. If I let one day slip I slide fast…. Down that dark road many of us know all too well. Except I know myself, I get stuck in that dark place and it eats me alive. th18L5ZWLY

I do my best to put a smile on my face and face each morning the best I can. Some days I am better than others, some days I spend on the verge of tears every second, like my life will fall apart around me at any moment. Some days I do spend in tears most of the day. I can tell you it is really hard to hide tears all day. Of course Mark sees through it and he does his best to bring me out of it.

I know most people with terminal illnesses will go through depression, anxiety and all the other fun bits that goes along with it. I have to say the past few months have been extra hard. With my daughter getting married and the fact we have had little to no help from the groom’s family or our own families. All due to different circumstances (so legit some totally bogus).

In top of everything else I now am getting billed for the formula that I was told was covered. Of course if my doctor had told me I would have to come up with a way to pay $250.00 dollars month for the next 8-10 months then I may not have done it and I might not be here today. The tube feeding is the only thing keeping me alive right now.IMG_20151006_023605 IMG_20151006_023204

I am petitioning my insurance company under special circumstances (however I am also dealing with a third-party vender. I also have to explain to their billing that I cannot pay.)  Would they please wait the 8-12 weeks it will take to get this worked out with my insurance company? Right now I am a month behind. I am praying they will be patient and wait. If not well I don’t know if I can continue the tube feeding.

If you can help , please do, just hit that little donate button on the right hand side. It does not have to be a lot of money.. I am more than appreciative. I wish I could say I could pay you back, but I know as of right now there would be no way. All the money donated goes towards medical supplies, travel to appointments and medical bills.

From the bottom of my heart I am pleading for help. If you can’t, well then you can’t. However you can pass it along to the next person who just might be able to. I am not greedy and do not expect all my bills to magically go away  over night. I just need a little help right now to get over this little bump in our road.

 I still appreciate you reading this and passing it on.

Thank you

dani

 

Update… Now Carcinoid heart disease to deal with on top of it all

I have been on this feeding tube now for a month. I was doing so well up till last week when I was hospitalized again. I went in for an infection in the area around the feeding tube. When I got there my heart was racing over 150 beats per minute and chest pain. Then my trip for an injection of antibiotic turned into me being admitted because of heart problems that they now had to figure out. I was admitted to the tele monitored floor where they tried to get my heart rate down for 3 days.

They ran all sorts of tests, CTs, ultrasound of my legs to look for clots and echo, EKG’s and other tests. So I was there for three days and they are now making me use forearm crutches because of my stability or lack there of. I tire easily and get winded very quickly.

Turns out this is because of what they found on the echocardiogram. I have thickening of the hear wall and hardening of the valves. As well as some back flow of blood into other chambers of the heart that are not suppose to be there. In short this is Carcinoid heart disease. This happens in 50% of people who have carcinoid syndrome. To be honest I was hoping I was going to be able to dodge that part of all of this. As always I get to be the rare of the rare.  At least I am consistent LOL….

Since I have gotten out again, I have ordered all my records from my insurance. When I get them I am going to start calling around and seeing if I can get a specialist to look at my case. Then if I can, I have to come up with the money to see said specialist. This is getting really serious now. The years I thought I had have turned into maybe 2 without treatment if I am lucky. I do know my insurance has no plans of treating this because they think it is not anything to worry about. Mostly because they don’t understand carcinoid.IMG_20150907_212544

This puts me in a bad spot right now because I am still trying to throw my daughters wedding and keeping my youngest happy. While running a household (with the help of my loving husband). My husband is in school and also taking tax prep classes at the same time. So after the first of the year he can work tax season. Then sometime March or April he is going to have back surgery. This is all going to be crazy expensive and I am still selling jewelry and collecting donations. I am hoping somehow to be able to go see a carcinoid specialist sooner rather than later. We really could use all the help we can get.

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Did you know? Carcinoid/NETs Cancer FACTS

  •  Over 90% of all Carcinoid/NETs patients are incorrectly diagnosed & treated for the wrong disease.
  • From initial onset of symptoms the average time to proper diagnosis exceeds five years. Most of the early symptoms are really non-specific and can be easily misdiagnosed which is why it is so difficult to properly diagnose it early.
  • More than 11,000 new cases of Carcinoid/NETs are diagnosed each year, which now means that NETs cancers are twice as common as pancreatic cancer.
  • It is considered a rare disease, and most physicians are often unaware of current diagnostic & treatment options. They hear over and over in med school. “If you hear hoof beats, think horses, not zebras.” They are taught it is generally more productive to look for a common rather than an exotic cause for disease. This isn’t ignorance as much as it is a lack of experience and exposure.
  • Many physicians still believe that carcinoid tumors are benign, slow growing and do not metastasize. Fact is when most are diagnosed their cancer has spread to distant parts of their body, and they are in fact stage 4 and incurable at that point….
  • Irritable Bowel Syndrome (IBS) and Crohns disease are two most common misdiagnosed conditions for patients with carcinoid
  • Abdominal pain, flushing, diarrhea, wheezing, bloating, heart palpitations, weakness, Heart valve lesions, cramping, telangiectasia, cyanosis, arthritis, pellagra, skin rash, heartburn and weight changes are the most prevalent carcinoid/NETs symptom’s
  • At least 110,000 people are living with carcinoid/NETs in the United States. I could not even venture a guess as to how many in the world.
  • Carcinoid/NETs Cancer is referred to as “The Good Looking Cancer” by the medical profession.

Most who suffer with this don’t look like what most think of when you say cancer patient. Traditional cancer therapies don’t work on this type of cancer. Most of us will not loose our hair (some do). Most of us look just like everyone else. Some of us will loose weight, some will gain and there will even be some who stay the same. You know that saying, you can’t judge a book by its cover. Same thing you can’t say a person is well or just by looking at them. We refer to ourselves as zebras, because of the rare nature of our disease and the saying that doctors are taught in medical school I mentioned earlier. “If you hear hoof beats, think horses, not zebras.” We are a heard of zebras. We may blend in, but we also stand out in our own unique way.21906stripesmakeusunique

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When Doctors and Insurance Comp. Take Away Your Cancer Treatments

When Doctors and Insurance Comp. Take Away Your Cancer Treatments…

As I sit here writing this I am left to wonder what am I going to do. About a month ago I went to see another oncologist in hopes of getting a fresh outlook on my care and maybe a chance to convince him I need to see a specialist. Well that went very badly and I documented it in my previous post  Giving up is NOT an Option Feel free to go back and read it to catch up.

Anyway, since that went to badly I filed a complaint with my insurance in hopes of being able to talk to them and show them information as to why I need to be seen by a specialist. See this is not just a want at this point. My insurance does not have doctors with the knowledge or the testing capabilities I needed to properly see what is going on with me.

  • Where did it happen?
  • What was my complaint about?
  • How I do I want it solved?

Well that was harmless enough. Except it only gives you 4,000 characters in each field for each question. I did my best to put all the facts thinking maybe I could fill in the rest with someone later.

WOW was I wrong!!

I got a phone call back a day later from Cynthia. She informed me that she was submitting my complaint to one of their doctors, and he would decide by the following day if I needed to be seen by a specialist. I asked her if I could speak with this “doctor” because there was a lot of information he would need to be able to make that determination. After all, this is a rare cancer and unless you are familiar with my case there is no way he can make an informed decision in less than 24 hours. She told me I could not speak with him or get his name.

At this point my life is in the hands of someone who has never seen me before, and has no prior knowledge of my case. I am seriously wondering how this is even possible…. I can tell you it is not. I got a phone call back late the next morning from the same lady. She tells me that this doctor has denied my request sighting that the insurance company has everything I need and can take care of all of my needs.

In the back of my mind I already knew this was going to happen. I have been denied before. Last time they told me it would not make any difference in my out come so they did not see a need.

I asked this lady what my next step was because I did not agree with this doctor. She told me she could resubmit it to another doctor and get back to me by weekends end.

My husband was the one who took the call. This time was from Eddie. My husband told him I was not available. Eddie proceeded to tell my husband all about the decision. Mind you he did not verify whom he was talking to or if he had my approval to get this information from him. He gave my husband details about my case that were quite sensitive. What this guy did was a breach of HIPPA laws and my husband called him on it. We will be addressing this matter as well.

Anyway, I was turned down a third time now. I am going to have to get a lawyer and go through arbitration at this point. This is not the worst part though.

I called the oncology scheduler to get my next two sandostatin injections set up and was told she could not do this. There was a note from the on call oncologist that said I had to wait until my oncologist came back to discus if I will be getting them at all.  I get these injections every 14 days and have for 4 years now. My oncologist will not return until after the 19th.  This will be several days after I am due for my next injection.

My oncologist has threatened to take way the only medication that keeps my carcinoid syndrome symptoms from making me too sick. However he has never actually done it.  I am terrified that if I cannot get the injections I will be sick and maybe even in hospital by the holidays.

I am not happy about this. The thought of it is honestly making me ill. I don’t know what is going to happen next. I really don’t want to do this. I don’t need the stress or anxiety of a legal battle. I especially don’t want a battle with a huge insurance company.

Giving Up is NOT an Option

I had an appointment the other day with a new oncologist. This is my 6th oncologist in 7 years. I am trying to find an oncologist who will listen to me. Someone who will or can explain their reasoning behind certain decisions. I want an oncologist who will work with all of my other doctors as a team.  I do not think this is too much to ask, and this is one cancer that is best approached by a team of specialists, sharing information and knowledge and conferring with one another.

My current oncologist knocks down suggestions made by my other doctors and gives no real reason. He has become very complacent and has stopped listening to me altogether.  When he thinks I am stable, he wants to pull therapy saying it is no longer needed. Then I find myself having to fight a physician to keep the standard of treatment and maintenance therapy in place for myself. The therapy (my twice a month Sandostatin injections) is the one thing that keeps me able to live a somewhat normal life about 60% of the time. It is the only reason I can leave the house. This random, misguided elimination of my treatment regimen has happened twice now and I don’t feel I should have to fight for something that is standard treatment.

I was hopeful when I left the house yesterday morning. I should have known it was going to be a train wreck when we hit horrendous traffic before we even got to the freeway. I called the clinic and let them know I was going to be late. They said no problem. Deep down I felt I should have canceled, but I did not listen to my inner voice. I found out later my husband also felt the same way, but he didn’t want to say anything. I don’t blame him really. I probably would not have listened.

We got there about fifteen minutes late, got checked in, and everything seemed to be fine. Then the doctor walked in and both my husband and I felt at that point it was not going to be good. The doctor had me go through seven years of what I have been through, which I was not really prepared to do.  Is it too much to ask to have a prospective new specialist physician to have read my charts, events, medical history, and followed my critical blood tests and care prior to a first appointment? I pulled it off as best I could and of course I left out a few items which might have helped.  Thinking back now, these overlooked event just would not have made any difference in the outcome of this appointment.

 When he entered the room, he seemed like he had better things to do. He even stepped out of the room to take a call and was gone for almost 10 minutes. When he did return I had to go over information which I had already covered. After that he then proceeded to tell me that he looked over my records and that there was no possible way I could be suffering with carcinoid syndrome. He said he had no doubt I had been suffering with something, but it wasn’t carcinoid related.

I was floored. This guy had no clue what he was talking about. At that point I felt it was in my best interest to wrap it up and leave. He then said something to me that just made my blood boil. He asked me if he arranged for me to get Sandostatin injections every 14 day would that make me happy? The implication was that he wouldn’t be following on this and that I would not be followed in oncology any longer.

This just kept getting better! Did he really just imply I was a drug seeker, requesting a medication that has no addictive properties whatsoever? A drug that in reality would have NO effect on a normal person unless they had the illness and in need of suppression of those related symptoms? I almost had no words. I wanted to come unglued at that point and tell him what I really thought of him. I was so hurt and angry.

I did not give him an answer and just listened to him as he continued to tell me things about carcinoid cancer that have either been disproven or that have been out of date now for past 20 years. I began to wonder if this guy was living under a rock.

I have been treated for this cancer/syndrome now for seven years. It is very well documented. I have had several instances of what they call carcinoid crisis during surgeries and procedures. How can they wipe out seven years of my medical history because two doctors have decided that there is no possible way I could have carcinoid syndrome. I don’t understand it.

I would have fought harder in that appointment but this doctor had his mind made up from the moment he walked in the room. There was nothing I could say to change it.

Now I get to do damage control. I need to see what my next step will be. I am afraid my next step will have to be arbitration with the insurance company. That can take 12-18 months and I have to get a lawyer.  At this point I am not even sure if I will be able to continue to get the Sandostatin that brings relief from the debilitating symptoms associated with carcinoid cancer.