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AVM, medullary kidney, pneumonia, bronchitis - Online Doctor Chats

Date : 21-Feb-2012
User rating for this question
Excellent Posted in: Kidney Conditions
Answered by

General & Family Physician
Practicing since : 2009
Answered : 681 Questions
User :   I am a 41 year old female. Married & a mother of 4 children 3 step children & 1 grandson. I work full time as administrator for I.T data management for a college.My life is full of demands & I am frustrated because I am physically having a hard time keeping up. I was diagnosed in Sept 2009 with a Pulmonary AVM fistula/embolism. It took 2 years of me complaining to my GP that I feel breathless @ times & it feels like an elephant sits on my chest every now & then. I was also continually sick with pneumonia, bronchitis, kidney infections, kidney stones. When I went in for a routine kidney CT the radiologist accidentally got a glimpse of my left lower lung. For 2 years I was continually coughing up white to clear frothy foam streaked in blood. I was born with medullary sponge kidneys so I am always dealing with kidney stones.(the CT scan showed 8 stones not obstructed & looked passable in sept 2009. I haven't passed any yet)) I had Pulmonary AVM coil / embolization Sept 15 2009, During surgery they placed 3 coils in the hole. Surgery took 5 hours & the Dr said the hole was larger then he expected. I was given no aftercare instructions. I had only been seen by a pulmonary Dr 1 time before surgery. Bringing you to date I now have left upper chest pain that comes & goes. I don't cough everyday but a couple times a month I do & I still cough up frothy streaked in blood crud. 3 days ago while at work I suddenly became aware of my arms feeling as if someone has tied weights to them. A deep ache was felt within my forearms. I became very tired. As I drove home it took everything for me to keep my arms lifted to steer my car. Once home I took 2 motrin & I knew I just needed to go to sleep for a bit. 1 hour later I woke up all the symptoms were still there & they haven't let up. I'm taking motrin every 3 hours. Im fatigued. My legs & arms feel weak. I'm worried I could have
User :   another embolism or that Im getting ready to have a stroke?I'm very uncomfortable. However my blood pressure is normal. I cant get in to see my GP till Aug 16th. Im also not confident in the care of my GP. I haven't had any new CT's or a checkup on the pulmonary coil/embolization since surgery. Could these coils come loose? I called an made an appt at a AVM treatment center in California. I feel like Dr's here in Oklahoma are NOT up to date with AVM's. I'm just wondering if my symptoms are concerning enough that I should go to a urgent care clinic or emergency room?
User :   Hi
User :   Let me read your query
User :   Thank you
User :   have you undergone the sputum test?
User :   No
User :   When was your last check up for AVM?

User :   When was the recent test done for the blood parameters?
User :   Sept 15 2009 day of my surgery. I have had no Blood parameters testing. This is what bugs me about my care here in Oklahoma, My GP has done no testing except when I told her I felt like I wasn't getting enough oxygen she checked my oxygen levels this was done in Sept aloso.
User :   Its long since you had your tests done.

User :   You basically need a complete examination and investigations along with the blood tests and sputum.
User :   Pulmonary arteriovenous fistulas are usually the result of a genetic disease that causes the blood vessels of the lung to develop abnormally
User :   Since you are telling bloody sputum this is also the symptom of pulmonary AVM and it also needs to be sputum examination
User :   To see any bacteria or any infection present which have lead to this.
User :   AVMs may occur in isolation or as a part of another disease
User :   I was on the phone today with UCLA's HHT Treatment center & after the nurse talked with director she said they would call back tomorrow to schld a time for me to come for a full medical check up. I had made an appt with the Pulmonary Disease Dr I saw just once before surgery to have him check things out.. The appt was Friday & when I got to appt he had an emergency at hospital so I had to re schld for next week. Can I as a patient tell my Dr what test I want ran?
User :   Yes you can twll the doctor and also carry the previous reports along with you.
User :   You require Blood tests, Sputum examination, Oxygen count, Chest X ray, Chest Ct
User :   And also pulmonary Arteriogram may be required
User :   I haven't been diagnosed with HHT however they say 80 % of Pulmonary malformations usually have HHT. I had no problems other than kidney stones until 40 years old and thats when all this started. How can I be born with the fistula AVM and have no symptoms till 40 years old? Is this normal? Can I have a recurrent Fistula's or Embolisms?
User :   Pulmonary arteriovenous malformations are usually the result of a genetic disease that causes the blood vessels of the lung to develop abnormally.They also can be a complication of some other disease.
User :   This condition is slightly more common in women than in men.
User :   Many people have no symptoms for long and later they pre4sent with symptoms
User :   It is possible for the condition to come back after blocking the fistula (embolization).
User :   AVM's are usually related to HHF
User :   It is usually a congenital infection and can appear in any location

User :   Symptoms of AVM vary according to the location of the malformation.
User :   Do you think this weakness in my arms(Deep Ache) & my feeling of major fatigue the past 3 days occupied by upper left front chest ache that comes & goes along with upper base of my neck pain (consistent)warrant a visit to an urgent care clinic since I wont be seen until next week?
User :   It will be better not to wait till next week and have an urgent appointment and get your ECG and other investigations done to rule out any serious problem.
User :   Should I call my GP & tell them I feel like I should be seen? I know right now shes on vacation but surely she has a fill in Dr? I'm taking Motrin for pain every 3 hours & I read online that a person with AVM history should not take motrin. I am also prescribed Mobic 1 x aday for Arthritis in my right hip(also a new diagnoses at 40) Could either of these cause any of my symptoms?
User :   Since you are telling the pain is consistent and also having chestache it is better to call and talk to your tyreating doc
User :   Have you been prescribed Mortin by your doc, if yes then it is fine
User :   But do not try self medication
User :   The symptoms what you are telling may bebecause of AVM only
Doctor :   are you there?
User :   No Motrin hasn't been prescribed only mobic however the mobic was prescribed before they found the AVM. Anyways thank you for your advice & I will act upon it by calling my GP 1st thin tomorrow. Do you have any recommendations on a treatment center that would be good at dealing with my situation that is possibly closer to OKlahoma?
Doctor :   you should be visiting any multispeciality hospital
User :   Otherwise I'm going to travel to California. To the HHT treatment center
Doctor :   such that multiple departments can work on you to solve your problem
Doctor :   and all further investigations can be done under 1 roof
Doctor :   travelling to California if it is possible, will be beter
Doctor :   option to further deal with your problem
User :   Yes I felt good talking to the nurse coordinator today at UCLA HHT Center. She was confident that a 7 day visit for testing in their faculty would be good for me
Doctor :   ok. that is good, a positive feeling and attitude solves almost 50% of the problem
Doctor :   after the tests there, you can continue to consult further at the UCLA HHT Center
Doctor :   with regular follow-ups
User :   LOL! Yes you are right! Until I get there I will try to get in to see my Dr. Or if any other symptoms worsen before that then Im going to go to emergency. I appreciate your help. Along with your advice on what tests I should have ran. Thank you
Doctor :   ok.
Doctor :   i will provide you a link to search for hospitals on Oklahoma
Doctor :   WWW.WWWW.WW Doctor :   visit this link to seek immediate help when needed
User :   Thank you, have a good night or morning considering your timezone.
Doctor :   is there anything else I can help you with?
User :   Right now you have helped with my immediate concerns. I cant think of anything else.
Doctor :   ok. thanks for consulting me. bye for now.
User :   :) your welcome. Bye for now.
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