More D. . . . Tests

[Bobbie]

Internist call yesterday. Have "a mass" in left kidney -- CAT scan Monday. Can't have surgery, biopsy, or chemo. so don't know why I agreed. Have had polyp in one lung for years -- refused further tests & still alive 6 yrs. later.

See osteo. doc. at KU Med. for bone density & exam Thurs. Have been on Actonel & exercise constantly. What more can I do? Blood work for CAT scan on Wed. Should have CAT scan this week but can't take more docs. & tests in one week & opted for a hair appointment instead.

If only I never had to see another doc or enter another medical facility again! Am sure this thought is shared by all on site.

[Nancy1]

Bobbie,
That totally sucks!!!! I am sooo sorry to hear it. You have had waaaay too much!! We have all filled our doctor quotas here, but you have filled yours more than most.

Why can you not have surgery or biopsy? Do these require antibiotics? And why not chemo -- does it cause cdiff to return? I am especially interested because there is a lot of cancer in my family, so I figure that this is in my future. As you said before, it is good that we don't know what is coming. I like Lauren's mom's quote about keeping on putting one foot in front of the other. Hang in there. We all care a LOT about you here! Big hugs!!

[Bobbie]

Nancy,
Yes, chemo. can cause C.diff. & many surgeries require post op. antibiotics -- ain't going there.

Think of all the docs. I'm making rich (er), however. Gives me a warm glow!

[Knitter]

Oh Bobbie, I am so sorry to hear this news. Now I feel badly bragging about how good I have been feeling. I am sending prayers and good healthy thoughts you way, along with a HUGE cyber hug (((((((Bobbie))))))). I am always here if you want to talk to vent or anything at all. Take care, because I care!

[jennie]

Bobbie, I too am so upset to hear that you have to go through this. But as you know, the quicker you get the tests done, the less the anxiety, of the wait. And it is always better to move faster, the earlier they figure what it is, the quicker they can get to work to fix it. And many, many things can be fixed, most masses are benign, some little knot of tissue that is proving bothersome. I think too that these days they do a lot with lasers, and it is a field where there is lot of expertise and knowledge. Again, may I remind you that you live in a country with the best medicine in the world, that is a blessing. We are so traumatised by doctors because our own little hell is so unknown and not understood. But there are conditions, with wonderful physicians treating. And you can search for the best ones, the 100 best (fill in the blank).. those lists, those medical centers.

Understand your objections with the range of treatments. CindyM might know, if Teichoplanin is FDA approved in the US yet. It is used in Europe, also for c-diff, and is said to be better than Vanco, a superior med, but a lot more expensive. I know that pharm reps say it can be used for refractory c-diff. Worth a quick research to see what is going on with it, and if it is available? It is also a MRSA drug, but tackles c-diff in new ways. Just in the event you may need it as back-up. It is also worth checking out if Vanco resistance lasts over years. This a deeply specialist area, but maybe if you have been off it for several years, and c-diff-free, it may work very well again?

As you know well, we tend to think that if you have to have anything serious, the way to go is to prevent the c-diff by taking the correct med alongside it, as protection. Look at Bev, for instance, she took 250QID and got through 3 weeks of that other antibiotic. If need be, they push to to 500.

And there will be newer meds, sometime soon. Even now, Xifaxan is an option, does best with early outbreaks. As you have said 1000 times over, keep on going, c-diff does not get to make decisions for you, it cannot rule you, and deny you care.

Sometime there are breakthroughs in one's care when they do actually find something, the reason for what has been bothering you, why, even macrobid was not fixing it.

We are all holding thumbs for you.

[Marcia]

Bobbie
I fear the day i again have to face a choice of surgery or chemo or antibiotics. Everybody has that fear. Another thing.... if anything happens you know more than enough on how to fight it and kick it to the curve. You will be ok! but do take care of the other stuff, sooner or later we have to be faced with the same thing we can't run forever, better to do it while you are strong.
Good luck and hopefully docs come up with the best plans.

[cindym]

Jennie- the drug you are talking about has still not been approved here in the US. It is my understanding that if a person gets really ill and does not respond to vancocin that there is a way for doctors to get approval for its use but it takes a lot of work on their part........many won't go to that trouble.

[Bobbie]

Thx. to everyone for their concern. Knitter, don't feel badly about feeling good -- enjoy.

I'll let you know results when Il get them --- the wheels of medicine grind slowly.

I have the next week scheduled down to the minute. Won't help anxiety, but I'll be busy while terrified. W&W -- it really s . . . .s!

[Bobbie]

CAT showed cyst in one kidney but benign --- also scarring & thinning. Evidently sonogram was incorrect about other mass or was read wrong -- mass was hiatal hernia.

Having another lovely test tomorrow -- a cystoscope. Am dreading it -- big time. Taking Macrobid, D. Mannose, & cranberry pills to try & prevent infection. Have I mentioned I am tired of doc. visits & tests? Took my mother to foot doc. today. The medical merry-go-round never ends!

[Marcia]

Bobbie maybe taking d mannose and cranberry pills would be enough for the UTI, do you have to take the macrobid too? Well i'm sure you've discussed it with doc.
About the cyst, when it's benign do they leave it there or they have to take it out?
I hope you are done with doc visits soon.

[jennie]

Bobbie, just goes to show, the art of practicing medicine. But a specialist has read the CT, and sees what it is, the other one read it wrong? At least, there is one on board who can read the test result!!

The scope is not so bad, I have had one (when c-diff undiagnosed was causing untold havoc that no-one could understand.) A l-o-t less awful than the other scopes, of that I can assure you; and I was put right out: they told me at the time that there is some reason that for these scopes you need to be fast asleep. It was almost painless, little bit of bleeding for a day or so afterwards. If I remember now, they checked out the bladder, sort of irrigate it or something, to see what is going on. Of course, do not know if this is the same procedure, and how high up they go, if that makes a diffference? Am holding thumbs it will be tolerable, and pain-free, and that at last they will figure what it is that is causing the bother.

If you recall, a few months back I posted about d-mannose. I think it is wonderful, it does incredible good for UTI's. But, I do recall that it is not supposed to be taken with cranberry, or with orange (juice). There were clear instructions on the mannose packet I got, from the UK, no idea why, but it is what they say. Also, it is best to take it away from food. It works by binding to the bad bacteria in the bladder, and flushes them out. I had hoped it would work against the c-diff, but it seems to go in a pretty straight line to the bladder. The web site is google-able, the source company in the UK is called Sweet Cures of York. It does reduce, even get rid of infection, testimony of 100's and 100's of people, mainly women. If it was me I would not take too much tonight, just so they can get a clear look at what is going on. You can always load up on it after tomorrow, if doc approves, of course?

Best wishes to you.

[Bobbie]

Survived yet another "procedure." Cystocope wasn't as bad as I anticipated. Unfortunately, Valium didn't kick in (took l hr. before) until I was leaving. Usually prescribe 2 days of Levaquin but because of C. diff. history, am on Macrobid. Also taking D. Mannose, but it has cranberry. Couldn't find "plain" locally. Urologist have never heard of it -- recommended cranberrry.

Won't get results for 2 wks. Tested, doctored, & "W&Wd" out. Thx. to those who posted good wishes. It meant a lot.

[jennie]

Bobbie, glad you home, safe and sound, and hopefully resting up. Glad too you were not doped out; it can take days to recover. Many urologists do not know about d-mannose; but then many GI's do not know about c-diff, or how to treat it, either! I talked a lot to the folks at Sweet Cures in York, UK. I understand that there are some urologists who are aware of the mannose, and it amazes them that it works, most often for e-coli infections. There is a mannose supplier in the US, in CA I recall, and alot of research is being done. The York people do also ship, and abroad too. I had concluded that theirs is the purest form of it, they grow the birch plant and ferment it (or whatever it is they do.) I took it for a while, and it was great. Would take more if I had more; very expensive to bring it over here. It is quite expensive, I should think wherever one is. This then, the sum of the searches of that time, what worked for me.

[Bobbie]

Thx., Jennie. Hope you are doing well.

[Knitter]

Hi Bobbie:

So glad to hear the "mass" was something not too major. I am glad you are done with the tests and will soon be your "self" again. My prayers and thought go with you daily because you have been so very good to me!

Once again I send you a cyber hug ((((((Bobbie)))))).

Have a great week!