2 Specialists Down, 1…or 2 To Go

It’s official. It’s a relief to know that I have two diagnoses and two treatment plans now.

The kidney biopsy results apparently led to both diagnoses.

IgA Nephropathy

It’s an autoimmune kidney disease, as I said. The Nephrologist said the prognosis is very good. We have caught it very early — though probably I had it 4 years ago when I saw that Nephrologist who didn’t really run any tests and just dismissed me so I could have caught it even sooner. My kidney functions are still excellent and don’t appear to be damaged yet. She is changing my blood pressure medication to one that will treat both my blood pressure and the IgAN. Unfortunately, this will have to be monitored for the rest of my life at the very least annually if not quarterly to watch for deterioration of my kidneys. Worse case senarios are total renal failure and kidney transplants.

Fibromyalgia

The Rheumatologist is now convinced that my consistantly high SED rate is the result of the IgAN as he’s eliminated everything else it could be in his arsenal and the kidney biopsy proved it’s not vasculitis. He’s given me the official diagnosis of Fibromyalgia and is requesting that my GP increase my sleep med dosage (b/c she prescribed it) and is prescribing water exercise therapy, which I now need to see where my insurance will cover sending me to. Again, I have to go back in 3 months. Unfortunately because of my kidneys, I cannot take any alleve, advil, or asprin to help with the soreness in my muscles or the pain in my hands.

The frustrating thing is that for the most part, there’s not a lot to change from what I’m doing. Just make sure I get more and better sleep at night and get some exercise, preferably water-based since regular exercise aggrevates the muscle pain. Weight loss will also help but without exercise I possibly can’t lose any more without starving myself.

Next Up

I’m seeing a GI specialist next week finally who I’m supposed to discuss the lack of Gallbladder surgery and possible IBS and acid reflux issues. Good timing as the Previcid seems to be no longer working on the acid reflux.

And the GP wanted to wait until after the kidney biopsy to send me to some sort of pulmonary work-up regarding that persistant cough I’m still having, though not as bad or frequent. I’ve got to try to see her next week about a flu shot too. Oy.

So, there’s good news and lots of moving forward finally! Yay!

Tags: IgAN, fibromyalgia, GI specialist, kidney biopsy, SED rate, rheumatologist, nephrologist, blood pressure, wellness

It’s All About The Kidneys

Well, my latest lab work came back still showing something abnormal with my kidneys. I’m going back over to the hospital this afternoon to get stuck some more; all of these tests have to do with autoimmune illnesses related to the kidneys apparently and most of these results won’t be back for a few weeks.

The Rheumy wants me to see a Kidney specialist and I’ve asked him to consult with my GP as she was also discussing this — I’d like to have one Kidney specialist and not two in the mix. Since he’s not in today, that discussion beteween doctors will have to wait until Monday, which is fine.

So the angiogram is still on hold because they can’t do any tests with contrasts until they know what’s going on with my kidneys, which they won’t know for a while. So all of that stress and panic just a few weeks ago was for naught. (After discussing this with my shrink, I’ve decided to work on not panicking about my health until the doctors start to panic from now on and just go with the flow.)

However, they’ve gone ahead and scheduled me for the CT-Scan of the lung for next Tuesday. The good news is that I’ve seen the original report from the x-ray now and I’m fairly sure it’s not cancer at this point.

Though I will say that one of the things I told my shrink is that I wish I could go back in time to before I went to the Rheumy and just pretend I didn’t go. I almost wish I could just pretend I’m just tired and I don’t feel well and forget trying to figure it all out at this point. The trying to figure it all out has become very overwhelming and time consuming. I guess for someone from the fast food generation, I just wasn’t prepared for this kind of process even though I said I was. I mean, I knew these kinds of processes of diagnosis can be long but I didn’t realize how stressful they can be. It’s so much easier when you have something recognizable like the chicken pox or a broken arm, but when your body is betraying you and medicine hasn’t caught up yet with what it might be, it’s like you’re lost and going crazy and the world is going crazy around you too.

Tags: wellness, autoimmune kidney disease, rheumatologist, CT Scan, lung cancer

All I Want Is A Little Relief

Remember that episode of M*A*S*H where Hawkeye has a hole in his boot but the Purchasing officer won’t order him one because he’s got a bad tooth and the dentist won’t see him and all the dentist wants is a three day pass to Tokyo but Blake is upset that Hot Lips is writing a report about him which she’ll agree to stop if Hawkeye and Trapper will throw Frank a birthday party; Radar will get the cake for the party if they set him up with the girl of his dreams who won’t go out with him unless he has a hairdryer which he can get from Klinger if Hawkeye and Trapper can get Frank and Hot Lips to sign his discharge papers.  Remember?

Lately, that’s how my medical care seems to be working.

I went this morning because of this continuing wicked chest cough.  I guess I’m tired of hacking up mucus, particularly at 2 and 3 am and I’m tired of having my whole body shake for five minutes every time I get started trying to clear my throat.  I’m also a bit tired of peeing in my pants every time I cough, which is something only old people are supposed to do.

But there’s a new development in my care…they aren’t going to treat this cough until the GP’s office gets a look at that chest x-ray that the rheumy took.  That one with the “dark areas,” you know?  It’s not in the computer system since the rheumy’s office took it themselves. So, while they wait for a copy, they sent me on to work, to hack and cough and freak out my co-workers.

All I want is a little relief.

Tags: chest x-ray, chest cough, lungs, rheumatologist, M*A*S*H, wellness

Takayasu’s Arthritis, Cancer, & Cat Scans

I just got back from the rheumatologist follow up visit (after having had to sit through 2 hours of a budget meeting this morning).

Apparently, the Lupus blood test came back negative, but my Sed rate is still high at 90. He also doesn’t think it’s Sjögren’s Syndrome based on the blood work and my tear generation test.

So, now he wants to do some studies of my blood vessels to see if I have Takayasu’s Arthritis, which is a really rare disease where your blood vessels shrink. Apparently normally it shows up in Asian women, but he says it’s starting to show up in more and more non-Asian young women.

Anyway, now I’m waiting to be scheduled for a Cat Scan of my upper body where they’ll inject me with dye to get a blueprint of my blood vessels.

Also, apparently my chest x-ray had some worrisome dark areas. They sent it to the hospital to be looked at by a radiologist who agreed. So now I’ve got to have a Cat Scan of my lungs too. He would also like some studies of my lung capacity since I’m having trouble breathing without much added exertion.

Of course, my mother’s first reaction is “Does he think it’s emphysema?” I have no idea why she would ask that. I don’t smoke. I’ve never smoked. I don’t even date smokers. I don’t like the smell of smoke. Granted, my father smoked a pipe the first 18 years of my life, but I’ve never heard of anyone getting emphysema from 2nd hand pipe smoke.

(But don’t think it hasn’t crossed my mind that lung cancer isn’t a possibility. When he said, “dark spots” it was all I could do not to start bawling right there. I mean, “dark spots” is usually what they tell women when they see something funny leading up to breast cancer.)

Unfortunately he can’t start me on any kind of treatment still because we still don’t know what to treat.

I’m feeling a little frustrated and depressed this afternoon even though I know this is generally a long process. Maybe it’s the fatigue or the UTI or the daily migraine or the stress of having a dirty house or being behind on my hobbies again and starting to feel overwhelmed.

Tags: Takayasu's Arteritis, rheumatologist, CAT Scan, Lupus, Sjögren's Syndrome, ESR, cancer, emphysema