Calling Dr. House....

[sandymbme]

I haven't posted in a while, I've just been too sick. But a trip to get my records from my local hospital to take to Cleveland has shaken me at least enough to post. I spent almost a week in the hospital here locally in June, and was fairly unclear why they kept me so long but was so sick and exhausted I didn't ask all that many questions. My husband swore that the doctors purposefully waited until he left the room to tell an incoherent me results or info. I was so out of it that apparently entire tests and procedures occurred that I didn't even remember until I got the records yesterday.

So...it turns out that I have an abnormality with my liver, paired with abnormal liver enzyme results and was considered a possible surgical candidate the whole time I was there. I also had abnormal EEG results, as well as abnormal EKG results. (And I do clearly remember being told that the EKG was normal and I had nothing to worry about.) Apparently each part of my body, (excluding my heart- no one seemed to think it was important to bother a cardiologist) was assigned a specialist, none of which talked to each other. The "floor doc" who was supposed to be overseeing my case was actually 5 different doctors in 5 different days. It seemed to be a priority to no one to have some sort of a pow-wow to see why the heck I was having issues with so many systems at once. I was also diagnosed with "moderate chronic gastritis" as a result of the endoscopy they did on this trip, and discharged because I insisted on going home if they couldn't give me any answers.

It seems like every system in my body is degenerating and it is scaring me to death. I am about a year out from the onset of potsy symptoms and have never experienced any real improvement, only decline. My pots doc doesn't seem to have much interest in my case and the nurses tell me that I am not having pots-related symptoms. My neurological uber-specialist is interested in my EEG results, my migraines, and my neuropathic symptoms, but can't shed any light on digestive or cardiac issues. I'm still waiting for my appointment with the gastroenterologist (September 30th for a follow up, UGH!) to shed some light on what is going on with my digestive issues. My PCP is just at a loss for the whole thing and my case file at her office has expanded to several folders. I live two and a half hours from Cleveland, where all my specialists are, but when I have to go to the ER the doctors here have never even heard of pots. I just keep getting sicker and sicker and no one seems to have the ability to step back and look at my whole body. I faxed my medical records to Dr. Grubb to be able to talk to them about an appointment next year, but have never heard anything back and when I tried to call and follow up the number I had was disconnected. (So if anyone has a current # please let me know!)

I'm sorry this is such a long post but I just feel like I am chasing my tail here. I got married just over a year ago and feel like I have missed out on so much because of an illness no one can make heads or tails of. (and my mother-in-law seems to think is in my head! ) I am in near constant pain, either muscular or the migraines, and am fighting to keep my job. Like so many here, I have to keep my job because I NEED my benefits, but am at a loss as to how to manage that when there are so many days I can't get out of bed. I manage to keep a pretty optimistic attitude most of the time, but lately I'm having a rough way to go. How do you keep it together when your body is inexplicably falling apart?

[lorrie]

The tone of your post really shows your desperation. I'm so sorry you are having such a tough time. I relate to having a different doctor for each body part...it is frustrating and finding a team that will work together is a struggle. I went through this for 10 years while all the time having my health go down the drain. I finally had to get real good and mad and tired of the run around. I got busy and found a good POTS doctor and he has been the one to appoint the other specialists I needed. They are all working together to compile the information and get me headed in the right direction.

Right now, I have a cardiologist, an ENT specialist, a GI doctor, a sleep specialist, my PCP and my POTS doctor who is a neurologist. The six of them are working together to get me on the correct medications and I am beginning to feel better.

Having my neurologist suggest the others has helped assure that they are networking and sharing information. It has made all the difference in the world. Before, I had 7 or 8 doctors, but they all were focused on a different body part and no one was talking to the others...I was spending twice as much time in a doctor's office and accomplishing nothing...just spinning my wheels and spending my money.

I have to add that my PCP is the same one I had locally for many years. That is one doctor I wasn't willing to give up because even though he had not been able to help with all my strange symptoms before I was diagnosed with POTS, he never gave up on me and he kept trying to help. Now, he is in contact with my POTS doctor often and he has gotten excited about learning all he can about my illness. He is also wonderful for all the regular medical stuff and is the only doctor I have locally. The rest of them are an hour and a half away. If I ever have to be hospitalized locally, I wanted someone familiar with my condition nearby. He is also the one they all call about medications so one doctor is overseeing that. It is nice being able to call one place for refills, etc.

I tell you all this to encourage you to take charge of your care. You have the right to demand the best care possible. You also should focus on finding one doctor who will take charge and help you find a network of specialist. Some people are afraid to switch doctors and don't want to go to a "friend" of another doctor...I found that those "friends" turned out to be doctors that trust each other and work well together.

Good luck to you!!!! Hope you feel better soon.

[Jeannie32]

I was so moved by the frustration and fear that was evident in your post today ? not to mention so very sorry for what you?ve endured of late.

I would certainly remain concerned about your liver ? but would caution you that MANY prescriptions have a direct effect on your liver enzyme levels. Perhaps your doctors need to get together ? or if impossible ? YOU need direct one of them, on your own, to monitor your bloodwork on a very frequent basis and to re-evaluate your meds. It would be tragic to start treatment on a problem that was artificially induced!

I didn?t quite understand why you feel your pots specialists are ?blowing you off? - <my words - not yours?> If you have been diagnosed ? by them - why are they not receptive to your needs?

Now, as for your mother-in law? If you check my previous posts ? I have a VERY similar scenario. Although my spouse <thankfully> remains supportive and downright WONDERFUL ? my friends(?) have been anything but!!!

I know ? firsthand ? that you must be plagued with fear and anxiety, that the prevailing sentiment might start to rear its ugly head with your husband too. Each day I have felt the need to distance my husband and I from these people ? as a protective mechanism. Are you otherwise close to your husband?s family? But - even if you are - the only answer might be to isolate yourself and your husband from the stress her doubt causes. After all ? your health is far more important!

Hang in there? We?ll say a prayer for you?.

[Maxine]

Sandyshell, I'm sorry that your having such a rough time. I know how it is, and it can get very depressing.

It's really hard to keep a good attitude when the medical system is in such terrible shape for most people.

Lolo, you are very lucky to have such a good team of doctors who cooperate with each other. I'm beginning to think this is more rare then our conditions.

I think if doctors, and other medical professionals were held accountable for their actions a few people may actually get the help they need, or lives could even be saved.

My cousin said "we have to be the doctor"---------------now that's pretty bad because she doesn't have a rare condition.

Don't get discouraged by my post----------------just be your own advocate, and press for the bast possible medical care.

Control your own medical file, and control the records that make it into the hands of a new physician. Make sure someone is there for you when you can't function, or speak with the docs. ALWAYS make sure you have someon with you who is supportive at every doctor's appt. you go to. You need a witness if your doc turns out to be a dud, or mistreats you in any way.

There are some really good doctors out there, but they are hard to find. If you have a good support system, you are likely to get better medical care. Always have your list of medications, and the most pertinant medical information with you for any ER visits. You can keep all you medical records, but I have a small folder of the most important information along with a medication list, along with allergies, list of doctors your seeing--- ect. Basically the lastest clinical notes is all you need, along with the meds & allergy list------------ everything that you want the ER doctor to see.

I keep this folder separate from my big file of medical records, so it's ready to go for new doctor visits, or if I would need to go to an ER. We just have to make decent medical care happen.

Oh-----and try to avoid anyone who thinks this is in your head, or is not supportive.

Maxine :0)