I haven’t been keeping up here

When you have an autoimmune disease, you need doctors. I have a rhuematologist to keep my Wegener’s Granulomatosis in check, a nephrologist to watch my Stage IV kidney disease cased by the WG. Also on my list of doctors is an endocrinologist for getting my thyroid under control. I had cancer last year that was caused by some type of radiation and not the radiation you get from X-rays.

I also see a thyroid surgeon, who wants to see me yearly to make sure that the cancer doesn’t come back. Lastly I see a doctor who manages my care, watches my hypertension, and makes sure I don’t get infections.

I did see all of these doctors in a months time, so I was a pincushion. Every doctor wants blood draws (or labs as I call them.)

One thing I was warned about by my first rheumatologist in 2003 was that when an auto-immune system gets triggered to attack itself, then the sufferer (me) will collect more auto-immune diseases.

Thankfully I am walking, talking, and writing. If you are interested in my writings, you can check me out at cynbagley.com.

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The continuing saga

Update: I went to Quest to get some blood drawn. It was about nine vials. I had to cancel my pre-op appointments because they must be done a certain time before surgery (two months is too far away). So waiting for the biopsy appointment.

Today I prepare to get some blood drawn for my new doctor, Dr. Wang. Now I have the right doctor. I have been pushing for someone to care for my thyroid problem ever since i discovered that the biopsy said a nodule in my neck had papillary carcinoma (translated cancer).

This is the doctor that is really hard to get to. I had to run through hoops with my primary care and my insurance. Then I had to get my brother involved because it looked like at least one of the doctor’s offices dropped the ball. It became a stressful mess for me.

On my appointment I was prepared for more of the same runarounds. I was resigned when one of the younger doctors took down my story and listened to what I had to say. Then he checked my neck.

Moments later I could hear him talk to Dr. Wang. Apparently the diagnostic team had dropped the job. They should have done a biopsy and more than one nodule and the lymph nodes.

Dr. Wang bustled into the room and I knew immediately that I would listen to what he had to say. I felt confidence from him and in me about his abilities. In my life as a professional “sickie,” you don’t meet too many doctors who are in the doctoring business as a calling.

And then I had the greatest shock. This doctor treated patients with my disease. He checked to make sure I didn’t have active Wegener’s disease in my sinuses. My sinuses and throat were clear.

Then he talked to me about the thyroid cancer. I could have a complete thyroidectomy–but in the field they had had more successes with partials. It was up to me. I said that I was prepared to lose the entire thing. But, I would be happier with a partial if we could get away with it. I am much luckier with at least something– i.e. I have some of my kidneys and I don’t have to deal with a transplant.

Well, the biopsy wasn’t enough to know if I could have a partial. So instead of scheduling me for a full thyroidectomy, I will now get some more diagnostic tests done. Then I will know if there is any cancer in the other side of my thyroid or in my lymph nodes.

Other than I feel slightly sick and really tired. I think I can handle waiting so that he can do this surgery properly.

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What gives?

So at the beginning of this year, I started to have problems again. I thought I might be in a flare. However, when my doctor took some labs, my kidney creatinine levels were higher and my inflammation levels were about the same.

If you read some of my posts here, I have spent a lot of time dealing with Wegener’s Granulomatosis and kidney disease. At this point the C-Anca that I had in the early part of my disease is now gone. I’ve heard from other patients that when the immune system is suppressed for a long time, sometimes the ANCA levels will go away. I find that very strange. This doctor who I have seen since 2014 hasn’t seen C-ANCA or P-ANCA in any of my labs.

He did raise my Cellcept another 50 mg which calmed a lot of my symptoms, such as vomiting and pain. I still was having night sweats, diarrhea, and my body revved up so high that I was losing weight and couldn’t eat.

My rheumatologist suggested that I ask my primary care to check my thyroid again. According to the labs my thyroid was in the high normal range. Still I would run high and my emotions would go the same way, and then I would crash.

Finally my primary care ordered a sonogram and then a week later I had a biopsy. The biopsy showed a strong likelihood of cancer and they even named the type of cancer.

What’s even worse is that I spent two weeks trying to get an appointment from anyone so that I could get surgery to take out this supposedly non-lethal cancer. That was around the first and second week of February. When I finally got an appointment after talking to several doctors and even going to the ER, the appointments were for this week.

Seriously, I have cancer. I started this journey at the end of January… and now it is April before someone even sees me so I can have surgery? Thank you Obamacare.

So I have been miserable for at least four weeks as I fly, crash, and burn. Send good thoughts because I will need it for this week.

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Still Alive

I haven’t written on this blog for a long time. I originally put this site up to chronicle the problems and solutions for the disease. Also I found along the way that many of the medications caused problems as well.

Vasculitis Month - ebookI was put on a stomach pill to mitigate the effects of the oral chemo I had to take. Eventually when I started to have problems with stomach aches, I weaned off the pill and used drinkable aloe vera juice. Nowadays, I take a OTC pill after I have eaten anything too acidy. I also found that the nightshade vegetables caused some of my acid reflux (potatoes, tomatoes, eggplant, etc).

Another note: I found with my metabolism that when I quit eating the nightshade vegetables (or only ate them rarely), my cholesterol dropped over 50 points. This may only work for certain types of people and not everyone. I am only telling what worked for me. It was a surprise to me that when I got my GERD under control, I also dropped my cholesterol. I would never have put those two ideas together… ever.

In the Shadow of Death I chronicle the diagnosis and first medical treatments I endured. I was in the hospital for almost five weeks and had a tube that stuck out of my neck. This same tube was in the carotid artery. I heard later that this is a very delicate operation. The doctor who did it had me on the table with four nurses. My husband was holding my hand and we were not in a surgery space. One nurse had a sonogram and the doctor threaded the tube into my neck. They used one shot to numb the neck. My late-husband said afterwards that he almost fainted when he realized they were doing an operation on a table in the nephrology dialysis space. But I was dying then.

It is now thirteen years later. According to the doctors I am stabilized. My C-ANCA markers have completely disappeared and my kidneys are stabilized at Stage IV, which means that I am still walking and talking without having to be on dialysis.

There are two reasons that I am living today. One is that I am a stubborn cuss. I fought hard to stay alive when I felt myself slipping away. There were times when it would have been too easy to give up. Two is that my late-husband (died of cancer in 2014) gave me as much of his care and strength as was possible. Even when the medications made me nuts. I was told later that having hallucinations on prednisone is not that uncommon when you are on the medication for high dosages (100 mg) for an extended amount of time (6 months). I eventually was on prednisone on varying levels for ten years.

Some of the problems I have had with prednisone besides hallucinations are weaker muscles and bones. Other people get prednisone induced diabetes. Thankfully I missed that bullet.

I have fought hard to get some of my brain back. Both the chemo and prednisone have stopped my thinking processes. At one point I had to ask my late-husband if I was thinking straight. Brain fog from chemo and prednisone is a real thing. It helps if you have someone who you trust and who will help you to stay sane.

Some things I have used to bring my thinking back is reading and writing. Plus I used brain games. One thing that I have had a hard time getting back especially when I am tired are the numbers. I have a problem with math. I used to be so good at it too. You learn your limitations and you learn to work around them.

One thing hasn’t changed. I need a nap in the afternoon. From the first when I was only awake a couple of hours and slept the rest, I now get up at 6 a.m., nap around 2 p.m., and go to bed at 10 a.m. Rest is very important when you are ill and even when you are stabilized.

I still see a nephrologist, a rheumatologist, and a primary care doctor. After I see them, I will put the information here.

Thanks for wanting to read more about this disease and what it does to the individual. I used to be very physical i.e. walked two or three miles every other day, and lifted weights. Now I walk the dog two times a day and have pudge around the middle. So disease is a real life-style changer.


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Abnormally normal

Last week I went to my semi-annual appointment with my Rheumatologist. I have been going to him for over eight years now. So his first words were that my labs were abnormally normal for me. My creatinine level was 1.6. So yes, the lowest level in over ten years. My protein levels were around +2. I vary around 0-+2. And so forth with the rest of the labs.

The one problem I had was with edema. Since my kidneys are compromised with this disease, I don’t “make water” like I should. I have used a diuretic after I had a glitch in the hospital (my ankles were twice their size from water). I don’t like using the diuretic because it gives me cramps– takes much of the elements out of my muscles.

I am using a natural diuretic (dandelion root) and it seems to be helping. I am not having pressure in my legs as much. The veins and nerves in my feet aren’t hurting. Plus the problem I had been having where my heart began to race has settled. I guess edema is worse problem than I thought.

Well, if it isn’t one thing it is another.

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Dry Mouth Treatments

Because of my dry mouth and wanting to keep a few of my teeth, I decided to try some Xylitol mints that are used for keeping the mouth wet.

In my case it was a big mistake, I seem to have a reaction to sugar alcohol and particularly to xylitol. It has given me a sour stomach and activated my GERD. I had to take some Prevacid. I have been burping as well.

It is a little better today, but it looks like I will not be using that treatment to keep my mouth wet. Dry mouth is a serious condition and I need to get it under control or I will lose the rest of my teeth.

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When you have to see a dentist

So I had a dental appointment on Wednesday. I usually hate to go not because I’m treated badly, but because I usually have either cavities or another tooth ready to give up the ghost. This time I had both.

Apparently from my prolonged use of medications (prednisone and chemo) I have a condition called “dry mouth.” This condition allows the bacteria to flourish much quicker than it would if a person had a normal mouth.

So I had two cavities and one molar on its way. It really needs a crown. Now comes the special circumstances and you thought that the special circumstances were the disease and medications. Oh no — I have another genetic problem.

Small mouth and big teeth. When the dentist put in the last crown, I could hardly keep my mouth open. My jaw cracks now every time I open it. I had an impression done of my teeth when I lost one of my bottom molars (same reason) and they had to use a child’s mold. When someone (anyone, even a toothbrush) is at that back molar I give up my stomach contents.

It gives me a problem. I can wait for 6 months to a year and have the tooth pulled or I can try for a crown. As you probably can guess the prices are in favor of the pull. Plus that would be the third tooth on the same side of my mouth. I wouldn’t be able to chew there at all.

I would have a zig zag pattern on that side of the mouth. I really would like to save the tooth. There is another problem. Even if the dentist successfully crowns that tooth, I may lose it in two years or more.

Dang– I just don’t know what to do.

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