My imagination is worse than reality

[Debbrn]

I have my first appointment with a pulmonalogist next wednesday because of my low lung volumes. My total lung capacity was 60% of predication etc on my last pulmonary function test. The results were slightly worse than 5 years ago. At this point it is most likely related to have my heart defect and having 3 heart surgeries. I wanted to see a lung doc just to make sure there is not another problem.

This should just be a reasurrance visit. Intellectually I know that, but emotionally I am a wreck. I am nervous meeting a new doc I know very little about. Mainly I am concerned that I will have a slow decline that nothing can be done about. Of course I have known for a long time about my heart, but checking out my lungs have just brought all my fears to the forfront. I remember not having any energy as a child, and I never want to go there again. I remember always being the last one picked, and standing on the dock alone after everyone else jump in because I could not swim.

I am single and have no one else to help me. My parents are no longer able and my sisters have proven that they are not willing. I do have good friends, but they are busy with their lives. They can only help so much.

I know I am just being an irrational basket case because I am doing pretty good now. I will have many good years ahead of me. But, I just can't seem to get it off of my mind.

Debbie

 

[cocoalab]

hi Debbie,
I was just visiting here again and saw your post. I can empathise with your feelings. I hope that you will like this new doctor and find an empathetic ear and I hope the visit brings relief and not more anxiety.

I can't really offer much but my prayers and my heart felt cyber hugs.

 

[Ross]

Deb, I'm down in the 20% of predicted range and I can tell you that even here, you can still function, but it is a bummer. I think of the things you do too all the time. Unless people have this problem, it's like heart surgery, they just don't understand it.

 

[Superbob]

Debbie,

Sounds like your mind races over troubled scenarios like mine often does. Hope you will find reassurance at your meeting with your new doctor, and that he'll be a continuing help to you. Let us know how it goes.

Cheers,

 

[Marguerite53]

I'm sorry that you are feeling these emotions. I had a very emotional day yesterday. My 86 year old father is slipping faster into dementia, and causing small stirs in his retirement community. He is just slipping away from me and he has always been my best friend on the planet. Nothing new, really. It just hit me very hard yesterday ....... maybe the moon is going through a phase??

I tend to be kind of a trickster. I don't like anxiety or fear. So I work to trick myself out of these emotions. Sometimes all it takes is some loud rock 'n' roll. Sometimes a long, windy ride in my fast little car. But when it gets serious, I make lists. I write down things I think I will need to do, or to have, or to be ready with. I make pro and con lists, or this is good with my life, this sucks with my life lists... Every time I do this, I empower that little optimistic being inside me. The yield is always stacked on the positive side....no matter how hard I might try to make it go bad. Life, essentially, is just too beautiful.

So, since I can't walk over and have a cup of coffee with you and end it with a big hug (which I would gladly do!), maybe you can try one of my tricks. Maybe you can look up some services in the phone book, get some prices, think about how you might be able to afford help if you end up needing it. Call some hospitals. They have social service people who have their own lists! They have a wealth of information. Maybe you can drive around and look at apartments, or condos, or homes with a master-on-the-main and no stairs that you can plan to move into. Sometimes just moving around trying to accomplish something can make you feel better! Plan abit with yourself. List your options. I bet you'll find out more than you expected to. Often just talking to people, asking questions, gets you so much information! When I was looking for a good place for my father to live (obviously much different situation, but still new territory for me to venture into), the help and kindness I received was amazing! And referrals. Call these people, go here, look into this! It was a whole network.

Of course I wish you the best possible news with your new doctor. And I hope it's a he and he's gorgeous and charming!! But if it's not everything you'd hoped to hear, maybe by exercising some pro-active thinking ahead of the visit, it just won't hit you so hard. Hm?

Good luck and best wishes!!

Marguerite

 

[imhayley]

cyber hugs!

cyber hugs!

~~~HUGS TO YOU!!!!!~~~~~~ I hope you find some peace of mind and you have just been sqeezed by me

 

[susieq14]

Debbie,

So sorry that you are feeling so worried and down. Of course you're a wreck - it is only human nature to worry and be concerned over medical issues so don't beat yourself up over it. I will cross my fingers and toes for you that you like this new doctor and hey if you don't - you know there are plenty more out there to choose from!!! I also hope that he gives you the positive news that you are hoping to hear.

I'm especially sorry that you are feeling so alone. If I could I'd invite you over for a nice glass of ice cold pink lemonade and how about some fresh blueberry muffins?

Take Care!
Susie

 

[Debbrn]

Thanks everyone for your kind words and encouragement.

Marguerite-The doc is a she, so I won't have to worry about being at a loss for words because my doc is drop dead gorgeous. I also bought that one level house with small lot last september. It is much easier to take care of than my old house. The social services department at the hospital I go to is a big waste of time. When I called them when my husband was so sick, I new more than what they did. They were of no help at all. I do thinks also to keep my mind of things. I call friends, go shopping or just take a ride in the car.

Ross-I intellectually know that my lung volumes are still pretty good. Its that fact that they dropped from the last time that scares me. I felt bad for complaining about my lung functions when I know that so many people have worse problems.

Maybe some day I can take ya'll up on your offer for coffee or lemonade. That would be so nice.

Three and half days and it should be over or almost over.

Thanks again,

Debbie

 

[Ross]

Get the copy of the PFT and post it. 60% of predicted isn't that bad even if it's slightly lower then 5 years ago. I'd like to see what your actual vital capacities and tidal volumes are if I could.

 

[Debbrn]

Ross-ask and you will receive.

FVC 58% 2.13
FEV.5 52% 1.16
FEV1 53% 1.51
FEF25-75 31% 1.02
PEF 53% 3.35
TLC 59% 3.12
VC 60% 2.20
IC 56% 1.35
ERV 71% 0.85
RV 53% 0.92
DLCO 80% 16.6

Debbie

 

[Nancy]

Debbie-

Joe has major lung problems along with his double valves. He has Pulmonary Hypertension, has had two lung surgeries, one, a decortication to remove pleural peel which was entrapping his lung, and on the other lung, they removed an isolated amyloidoma which they thought was cancer. The lower lobes of both lungs don't function well, and now he is being tested for autoimmune disease of some kind which might be attacking his lung tissues.

Not that I want to get into this long litany of his problems, but wanted to let you know that he has lived for a long, long time with these multiple problems. He's 75 years old now and just started on oxygen only at night.

He's a fighter and doesn't give up no matter what. And he has some extraordinary medical care, with good medications.

He has found that there are things that can be done for most situations either to halt whatever it is, or to mitigate symptoms.

It's good that you are going to a pulmonologist for a workup. When they catch things early on there are things that can help.

So, let us know how it develops.

Wishing you the best.

 

[Debbrn]

I went to the pulmonary doc today. The current thinking is that the low lung volumes are all related to my cardiac status and my scoliosis. They want to do a high resolution CT scan to make sure. I am waiting on pre-cert from my insurance company.

I brought my copies of my medical file with me. All organized by organ system with just the important info. The doc was impressed with how thorough my file was. I am very glad that I brought my own, because they did not have the hospital copies to prepare for the appointment. They only had minimal info from my PCP. They had to make copies of the PFTs that were done just down the hall from the clinic because they did not have those either. (I get all of my important medical care at the same facility.)

Another case for having your own copy of your medical record.

Debbie

 

[Ross]

Ross-ask and you will receive.

FVC 58% 2.13
FEV.5 52% 1.16
FEV1 53% 1.51
FEF25-75 31% 1.02
PEF 53% 3.35
TLC 59% 3.12
VC 60% 2.20
IC 56% 1.35
ERV 71% 0.85
RV 53% 0.92
DLCO 80% 16.6

Debbie

The one I'd like to post for you is the one I don't have. Social Security has it, but I'll dig up one of my others from when I was a bit better and compare.