Lung function-long

[Debbrn]

It will be easier if I just give a time table.

1. Born with TOF in '65. Heart surgery x3 over the years.
2. 2001-my PCP ordered lung function studies to test for asthma. My baseline studies were to low to perform the test for asthma. Asthma was ruled out with other means.
3. May 23-had routine physical with PCP. I requested the lung function studies be redone since they had not been done in 5 years. Told me that he thought the low volumes were because of my heart surgeries but agreed to repeat them.
4. June 2-Lung studies repeated. I requested and received a copy of the raw numbers at the time of the test. (I have known the tech that did the test for 12 years). Total lung function 59% of predicted. Forced volume capacity 58% down from 68% 5 years ago, etc. Intrepreted results myself. (Moderate restrictive lung volumes)
5. June 8-Called PCP for test results. Was told that they had not received the interpreted results yet.
5. June 13-After I called for results, I was told by PCP nurse that the volumes had decreased. (Dah-I knew that June 2.) At first they were just going to repeat them in six months and then decided that if I wanted to he would just go ahead and refer me to a lung doc.
6. June 14-Was told "they were looking at my medical recored to decide who would be the best lung doctor to see me".
7. June 17(today) I still have not heard anything else from them.
8. I will give them until June 20 (next tuesday) before I call again. (I month after my original appointment). It will probably take 2-3 months to get to see the doc.

Are things moving slow or what?

There may not be anything that can be done, but I want a lung doc to tell me that. The good news is that what oxygen is getting into my lungs is then getting into the blood stream. I worry because I am single and have no one to help if things get worse. My parents are not able to help and my sisters have proven that they are not willing to help.

Debbie

 

[PJmomrunner]

Sounds slow to me. Sorry they're taking so long--that would drive me nuts. How many pulmonologists are in your area? Why don't you make appointments with all of them yourself and cancel the ones "they" don't choose? (I'm only half kidding! )

 

[Nancy]

Joe has serious lung problems also. He had been seen by a pulmonologist and not much was being done. Yes, he does have pulmonary hypertension, but he has other, perhaps more serious, lung issues which haven't been addressed. Every one of his ER visits in the past two years have been because of breathing problems. So we have switched his care to another lung doctor. It took two calls from me and two calls from the Internist's office to finally get an appt. They are busy guys since many of them also do Critical Care, so I would advise being a very squeaky wheel and see if your primary doctor can help you get in.

The first appt. with this new lung doctor has developed into quite a few new tests and a new CATscan.

Joe's oxygen sats have dropped significantly recently and at times he is hyperventilating because he is not getting enough oxygen. So oxygen in some form may be in his future.

Good luck and I hope you are seen soon.

 

[geebee]

Debbie,
I would push them for a referral. If you do not need a referral to see a specialist, talk to others for the name of a good lung doctor and make the decision yourself. If you go to a local hospital you trust - ask the nurses. You could also aske the tech who did your test since you mentioned you trusted him.
I am sorry you are having such problems. I am humbled because I whine about my problems but I can still breathe and get around fairly easily (except now with my broken foot). My problems do seem smaller when I hear of yours.
I wish you well.

 

[Debbrn]

Thank ya'll for your replies.

First off, I am glad that they are trying to find the best pulmonologist for me, and not just sending me to one that has the first opening to pacify me. I just wish it did not take so long. I have my care at University of Alabama (UAB) hospital and they will not make an appointment with a specialist without a referral whether your insurance requires it or not. With my problems, I am affraid that no one outside a university setting will have a clue what to do with me. Come tuesday, I do plan on being the squeaky wheel.

So far, I am doing pretty good. When new things come up, I always get frightened about my future and then calm down a bit. I am still working in a very active job and keeping my house up without hired help. Though I do get exhausted at times. I walked 3 miles at 3 1/2 miles an hour last week. I am so proud of that. I am sure that things will work out in the end. The process just drives me nuts. I think waiting is the worst part.

Debbie

 

[Lynlw]

Debbie I am sorry you are going thru this and hope you get answers soon, Lyn

 

[Der Biermeister]

Debbie -- too bad you don't live a little closer to Richmond. I'd recommend this fellow:

http://www.pulm.vcu.edu/fairman.html

Late last summer I did a lot of research in looking for answers as to why I couldn't breath, and this Dr. Fairman (who I got into see) is one the best in the business.

 

[Debbrn]

Update

Update

Today June 19

I called to check on the appointment. Come to find out the secretary that makes the new patient appointments is on vacation and they are not making any new patient appointments until she comes back next week. After I asked, they told me that there next new patient appointment was not until SEPTEMBER. I did at least find out that they want me to see Dr. De Andrade at UAB. From the limited information that I can find out, it seems that he should be the best doc at UAB for my particular problem. Has anyone heard anything about him?

Debbie