It seems life goes along at a normal pace then for a few days it is a blur. A blur of fear, sleeplessness, upheaval and doubt.
I think in my last blog I mentioned that my Pulmonologist wanted me to come back in and re-do the Spirometry test they had done 9 days before. So, last Thursday I went in and re-did their test. Firstly I had lost 6 pounds in 9 days. Yeah for me.
My test results showed (confirmed) that my breathing percentage had dropped 32% in 11 months. They seem to think that was very fast and at that pace I needed to be sent to Stanford to have them take a look at me, especially for Lung Volume Surgery.
My Respiratory Therapist suggested I hold off on all surgeries or procedures and let Stanford deal with those. She sent me home with the words... you WILL hear from Stanford within 2 weeks. I even asked her if that was pushing things? And, she said NO. Once they receive my file they will want to see me.
In the meantime I had an appointment with my Primary Care Dr. who remember I had asked to be my go-between with all my doctors and procedures they wanted to do on me. Well, she said that she wanted me to keep all appointments..... even with the Urologist in Medford (which I had cancelled, now tomorrow early I have to call to see if I can still keep my appointment). She said that the Gynecologist is concerned about my lungs and surgery. He also wants to get all the results from the Urologist so that if something can be done with my bladder and urine leakage then both things can be fixed in one surgery. He (the Gynecologist) told her that he had been in contact with my Pulmonologist who said at this point with me he doesn't feel confident putting me under and putting a breathing tube down my throat. That IF I were to have any surgeries here they would do a spinal and keep me awake monitoring my breathing.
This made my Primary Care Dr. suggest that if this procedure is needed (which it is... I have a 4 lb tumor growing on my uterus), then perhaps it should also be done at Stanford.
So.... I have all this information, but yet I know NOTHING.
I don't know when I will go down there? I don't know how long I will need to be there? I have not been through a Pulmonary Rehab Class... and I have been told that is a requirement prior to surgery. If that is the case I would have to stay down there for the rehab because we do not have one within a hundred miles of me. I am not sure how long those classes are, but I think 5 days a week for at least 2 weeks.
I don't know if my insurance will help pay for traveling expenses. Stanford is about 7 hours away and I drive a Dodge Durango with a magnum V-8 which is great in the snow, but sucks the gas down like a little kid drinking a slurpy!
I don't know if Bill stays there with me if they will have housing for us, and how much it will cost to stay there? I don't know while we are gone what will happen to our dogs and house? I don't know anything and it eats at me.
Oh yeah... speaking of it eating at me..... my Primary Care Dr. (whom I love) says that I DO need counseling. That the amount of stress I am under right now and not sleeping will make any surgery or procedure harder on me. So, she is seeking a referral and will have them call me to make an appointment, and has increased my anxiety medication and the dose of what I take to sleep at night. I am up to 9 pills in the morning, and 1 at noon and 4 at night every day... plus 2 inhalers and my O2 of course. I spend more time filling my perscription holders than I do doing anything else.
So... when I know anything, I will spread the word. In the meantime hang in there with me.
So... This is my update. So much to take in, yet not much news. Welcome to my world! lol
5 comments:
So good to hear from you again, Kellie...I was concerned when you hadn't blogged in a week. I'm glad you went to church...prayer works and I believe in a Higher Power...yes, I've been a "crisis Christian", too, but God is good and He is the one who has never left me...I wondered about you going through uterine surgery with your lung issues, it seems like now that is being addressed...you are in my prayers, Savannah
P.S. Stanford is a GREAT medical facility...if you are going there, you will be in the best of hands (along with God's :)...Savannah
hi kelli.. just read ur blog,sounds like me soo much. ok iam 23% going for another pft april i think, i m waiting for a letter now, as for being so far away from ur center,and needing housing, go to nft.i have there number ill be happy to send it to u, its for fundraising, have ur friends do one u can have more then one, i have friends doin it for me for the meds, after tx ur meds are gona be soo much money.ur center wil go over that with u, theres so much invovled in this,like u im confused but trying to be very positive:) did u get evaluated yet,the testing i did 3 a wk oct?nov was told dec 23 still have time, now after my 2nd hosp stay im being eveal agian april, rehab 2 wks but gota continue,that suxs ur so far from one, they will give u a counclor,social worker, but do that fundraier thing. its going to come in handy. well good luck kelli, all i gota say is i no u what almost 1.1/2 yrs :)) ur the one person who told me about a pulmo dr, fev-1 ill never forget u for that eaither,u was always strong to me, stay that way, dont change, better days are coming, you will see, as for family, with my husband well i had my issues also but its working out, rem, everything happens for a reason,everything will fall in place and were gona look back and say whatt the hell and how did we get threw all that,, lolol well good luck next week, ill be thinkin of u as i always do. and luv the blog xoxox joanne from ex aka,jojo :)
I am continuously blown away by the courage you have Kellie. I honestly don't know how you deal with everything you do.
If I weren't so wrapped in my own little world of poor health, I would know more about what you were going through. I only read bits and pieces here and there because I try to just block out the world most of the time. When I do read, all I can feel is just "Wow!"
I'm so glad that you have so many friends, both here and around you supporting you through all of this. And it sounds like you have some pretty awesome doctors too. I know that I love my rheumy. She has been so helpful to me in learning about what to expect and how to handle what I'm going through. Wish I could find a Primary as good as her.
I love you girl, and will continue to pray that God will watch over you and your physicians so that you will come through all of your surgeries healthier and happier, and able to do things you thought were impossible to do anymore.
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