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Thread: 4 Doctor visits this week.

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    Default 4 Doctor visits this week.

    Ok 4 more doctor appointments this week.

    Started out with the PC who is just keeping track of me at this point. She is also board certified in Infectious Diseases. She did want me to have the Pneumonococcal Conjugate Vaccine (PCV13 vaccine) This is the pediatric dose, but it immunizes against 13 strains that cause the most severe infections in children and about half the infections in adults. It is recommended for children and people with health issues. My doctor said it was especially important for immunosuppressed people. One of the strains that it covers is Streptococcus pneumoniae bacteria. That was my take away from that visit. Got the shot, no reactions.

    Next was the Pulmonologist. Found out that the whistle that I've developed is in the back of my throat and not my bronchs. Still short of breath with not much effort. Lungs are clear as they get, no wheezing anyway. ANCA was negative and sed rate was normal. No surprise there. He did extend my time out of work until February 15th with my next visit to him on Feb 14th. Happy Valentine's Day to me.

    Next on to the neurologist. Oh let's see since I fainted last week he wants to do an EEG and Brain MRI. Also agreed that some of my neuropathy in my feet could be caused by Wegs. Hallelujah a doc that is listening to me. Will probably get the EEG depending on insurance, but the MRI will have to wait. First of the years deductibles and a high copay on an MRI. Being on STD doesn't give me much money wiggle room.

    Today I finally got to see the Cardiologist. I was referred to him for possible pulmonary hypertension as the right side of the pulmonary artery in enlarged. I think this is correct. It does have to do with the right side. Before i saw him I did a 6 minute walk test to determine what my oxygen levels did. I started out with a pulse ox of 92, not great, but it is what it is. About halfway through I was pretty winded and a little lightheaded. It had dropped to 86. Rested a bit and finished the walk ending up with an 87. BP was a little high too even though I'm on BP meds. Doc said he wanted to do an EchoCardioGram and a Heart Catheterization which is truly the only way to diagnose Pulmonary Hypertension. Luckily my insurance covers the Echo at a 100% which is good. Unfortunately the Cath is going to cost me about $1800. Sorry don't have it. So I'm going to check with the VA and see if I can get them to cover the Cath or perform it if they won't pay for it. That, however, will probably take several months to even get the appointment with Cardiology. He did assure me that I wouldn't die of a heart attack before then. I'm holding him to that. He did say that he wants me to be on oxygen when I walk as it will help with the breathlessness. If that will help I'm all for it. It will hopefully be short term until he is able to make a diagnosis and I can start some kind of treatment. This was one of my most important doctor appointments at least for me.

    I had an appt with a Mayo Rheumy this week but canceled it. I was able to move my local Rheumy appt to the 16th and I didn't really want to step on her toes. My PC said she is an excellent Rheumy and fights like a bull dog for her patients. She is also well versed with Wegs. So I'll let you know how that all turns out next week. Just consider this my continuing saga. Leaving you with...........
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Hi Cindy,
    sounds as a very productive week
    I am glad that your lungs and bronchi are ok. and also the ANCA. does it mean that you wg is "quiet"?
    I hope you can find a way to pay for the Cath. it is annoying when good medicine is only for people with money
    having wg, means working 24/7 in sustainning number one
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Thanks Alysia, No my wegs is currently active in my lungs although the nodules are shrinking and disappearing. My biggest problem right now is breathlessness and tiredness, which is tied to the former. I thought it was the Wegs now it may be the heart caused by the lungs not functioning properly. So confusing.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Had the echocardiogram yesterday and I'm having the heart cath on Tuesday. (The hospital will let me make payments. Yey)

    From my Rheumy appt this week I learned that Cytoxan should be taken in the AM ONLY because it is extremely toxic to the bladder. If you split your dose take them both in the AM. If you take it in the PM is sits in your bladder over night and can eventually cause it to hemorrhage. This info is probably on the site somewhere but thought it worth mentioning again. I split my dose because it was causing nausea and was taking a dose in the PM. She's checking my urine to make sure there is no microscopic blood in there, which needs to be done periodically anyway.

    Got my portable oxygen yesterday. No opportunity to use it yet, so nothing to report there. Down to 25mg pred, but my chest has felt a little tight the last two days. So will hold at 25mg to see if it will stabilize.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    ​Heart Cath tomorrow. Yipee.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Quote Originally Posted by windchime View Post
    ​Heart Cath tomorrow. Yipee.
    good luck Cindy, fingers crossed !

    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Heart Cath results: Negative for Pulmonary Hypertension and Congestive Heart Failure.........Heart is in good condition......

    Now back to finding out why my breathing has deteriorated so badly in the last 2-3 months. X-rays are showing nothing and next CT not due until April 1. If it's the WG's then the CTX isn't doing much either. Currently on 27.5 of Pred. Rheumy and Pulm dr appts in early Feb. If anyone has any other ideas please share.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    My bet lies with the Pulmy. I would ask him about doing a bronch to take a look and see.
    Phil Berggren, dx 2003

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    hats off to u....ur a bravo....my hugs n wishes to u///..

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    Quote Originally Posted by pberggren1 View Post
    My bet lies with the Pulmy. I would ask him about doing a bronch to take a look and see.
    Phil, I had such bad experiences with the 2 bronchs I've already had, that I'm afraid to have another. He removed 2 calcium deposits that were blocking my bronchs, which should now make it easier to breathe, not harder. I'm a chicken, there I've said it. I see the pulmy on the 12th and I'll see what he wants to do.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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