To everything there is a season, and a time to every purpose under heaven.

It's been 8 days since my last blog.  I kept thinking I should blog, but was kind of waiting until I heard any news before I came here to share.
I have been so tired.  I just have to make myself get up to do anything.  I have been taking my nighttime meds and going to bed a couple hours early just to 1: get the day over with.  And, 2: because I am so tired that I have a hard time staying awake.

Last Friday I called my Respiratory Therapist to find out if there had been any news.  Their office was closed, so I left a fairly long message asking if they had heard anything?  Reminding her that she said 2 weeks.  I told her I had called my insurance company which said they have had no requests come through for me at all.  I told her I was trying to be patient but I really needed some news, any news would help.

Monday morning I got a call from her and she explained that my paperwork was sent to the wrong place and she is tracking it down, that I should hear pretty soon.

Yesterday I got a call from Stanford.  The new patient nurse explained my file had somehow been faxed to a different part of the hospital and she just got it.  She told me they would look over it and get in touch with me for a consultation.
I asked her about a Respiratory Rehab Class?  That there was not one within an hour of where I live.  She explained that they overlook that there.  That it is important because it helps patients get in shape and exercise their lungs and for those that need it they lose weight also.
I asked her what the weight on my chart said, and she told me at the weight listed I didn't qualify for surgery there.  She said my chart read 197.  I am not sure how old those charts are, but I told her I am at 185 now and still losing, and have begun to exercise again (even if it's only 5 minutes at a time).  That I have went from a 22 pant size to a 16 and those are beginning to get lose.

She said that made all the difference and now they would be scheduling a 3 day evaluation and tests.  That now they will begin with the financial part.... Meaning they will get in touch with my insurance company.
SHE told me that I should be hearing from them within 2 weeks.

That darned 2 week # kills me!  I think just the fact I have shown that I will continue on with my weight loss and am not a patient that will sit there and not do ALL it takes to qualify helped me.  So, the next 2 weeks I am pushing myself.

My primary care Dr.'s nurse called me last night and told me my blood work (a week ago) showed my Iron level is really low, so I am going to the pharmacy this afternoon and pick it up.  She said I will do fine on it, except it will cause constipation.  Can't the drug companies ever make anything that doesn't cause constipation?  LoL....  No worries, I just upped my laxative's.

This week I have no Dr.'s appointments.  Next week I have a primary care doctor's appointment and a EKG at the hospital and an appointment with my cardiologist.

In the meantime I have enjoyed going to Church every Sunday.  There is a woman there who has helped me with scripture and some homework on growing and trusting the lord.  I took Layla last Sunday to Sunday school and she said she really liked it.  We'll see if she wants to go again this week.

So... there you have it.  A little whining, a little frustration... but I am trying to learn how to let all that go and have Jesus take that on him and away from me.

I will update again as soon as I hear anything.

Stanford and Prayer

So, it's been a while.  I have had a few Dr.'s appointments and gotten some news.  I needed to absorb it before I began to comment on what's happening.

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.

Last week I had asked a friend of mine if I could accompany her to church?  She picked me up this morning and I enjoyed myself and left with a feeling that I would be protected.  It was the first time in about 13 years I had been to church and I actually opened myself up to the possibility of Gods love and devotion to me, and mine to him.  Before I had always attended but never felt I was worthy of a relationship with Jesus.  Today was somehow different.  I left feeling like a weight was lifted, I am not as afraid.  I will not lie and say I have no fear, because I do.  But I know I am in Gods hands and I have so many praying for me.

So... This is my update.  So much to take in, yet not much news.  Welcome to my world!  lol

Just Breathe

I have nearly quit feeling sorry for myself.  Why do I feel the need to have these days.... I do not know?  I am beginning to feel more frightened and worried.  I assume this is normal when having your lungs removed from your body is in your future.  The thought of that just seems like death to me.  I don't mean to be graphic but that's the picture in my head.

I did not sleep through the night after hearing the news until Sunday, my mind just would not turn off.  I wondered about leaving Bill and Brittney and how they will get along.  I know Bill will be fine, lonely but fine.  But, I worry so about Brittney because we are so close.  And, Layla too.  She is at the age where she will miss me.  This is all I thought about the next 2 or 3 days. Well, today is Tuesday.  It's been 5 days since my Dr.'s appointment and I am O.K.

I have been reading all the information that was sent home with me and have found out that once approved and listed I need to be ready for surgery.  Makes perfect sense.  My body needs to be free of infection and healed from any surgeries.

Well... I had went to the Gynecologist which referred me to a Urologist to have testing done on why I am leaking urine?  My Urologists appointment was today but I canceled it because of our recent snow and I am sick again.  I have rattling in my lungs and a fever then the chills, and green sputum coming up when I can cough something up.
So... I am back once again on Prednisone and a Z-pack.

I got off track there for a minute.  lol
Back to the Gynecologist and Urologist.... I initially went to the Gynecologist because of leaking urine, he wanted a ultra sound done which found my Uterus is almost double in size and I have a 8.2 cm fibroid tumor that is growing on it.  He talked of a hysterectomy to remove my Uterus and the tumor... but first wanted a Urologist to do a specific test to see about my urine leakage.

Well, when I called the Urologist to reschedule the person on the phone told me I could get in March 5th, but it would not be for the test, just a consultation first then he would schedule the test for a later date.  This could be one to two months down the road... then to send the test back to my Gynecologist, have him look it over and then make an appointment with me to discuss it... then to schedule the surgery either here or in Medford which would be another 1 to two months.  So...
I called my Gyno yesterday and of course I couldn't speak to him, I spoke with his nurse.  I tried to explain to her that YES, I initially came to him for bladder leakage, but now I am willing to live with that and now I need to have the hysterectomy ASAP.
I explained to her about going to Stanford within the next 4 months and prior to going I need ALL surgeries done and to be 100% healed.  That they do not like to do surgeries after transplant because of the anti-rejection medications and the risk of infections.
She kept telling me she would talk to the Dr. and call me back.  Finally she said that the doctor would talk to my Pulmonologist and get back to me.

Today I talked to my Pulmo's nurse (whom I adore) and she said she agreed with me.  That the urine leakage is not convenient but not life threatening, and I could deal with that... but the fibroid tumor growing on an enlarged Uterus is something that needs attention.

So, I called my trusty Primary Doctor and when she called back I explained to her about everything.  She said she would act as my liaison between all my doctors and try and get these things, including my thyroid done quickly and she would get back to me next week.
Whew!!!!!!!

I have decided since talking to a friend who is in North Carolina at Duke University waiting to be listed that I will feel more comfortable with all this after I can get to Stanford and talk to the doctors and staff about what will happen.  There is just so much unknown right now.

I have developed a decent attitude.  I am just throwing my arms up in the air and letting things go as they will.  I have no control now.  I put everything up to my doctors.

I can report that I am still losing weight.  I am down to 190.4  I feel like I am losing more inches than weight.  I am happy with my progress anyway.  I feel confident that I can reach my goal of 175 by June.  Hopefully more.

Well, I am tired, my meds are taken... my eyes are getting droopy and I feel like my eyes look.  More later.

Just one more thing

Let me catch you up to date now that I have my computer back.  It's nice to have a laptop... but I get so tired of typing and then suddenly having everything disappear.

My primary doctor, I mentioned...went on maternity leave.  She had her baby (a boy) on Thanksgiving.  She won't be back to work until the latter part of January.  In the meantime I had one of her referral appointments with the gynecologist.  It was regarding my bladder leakage and basic pain in that area.  After a lengthy discussion and question and answer period and exam, he scheduled a trans vaginal ultrasound.  It will be this Thursday.  Evidently my Uterus is enlarged and there is a mass growing on it.

He had me bring home what he calls a "hat".  It's use is No Where near the head.  You urinate in it and measure the intake (or is it out-take?).  For 3 days I had to keep track of each time urine leaked, everything I drank, and how much I went to the bathroom.

I was so happy to throw the "hat" away.  I mailed the results to him and I am sure after this Thursday's ultra sound he will call me after Christmas for a follow up.  He did say that if surgery was required he was sure it wouldn't be until after the first of the year.  Which, is just fine with me.

Also, I am not sure if you remember but this summer I had a cyst removed on my shoulder.  I went to the walk-in clinic today with anther one that is infected between my cleavage.  I had my doctor in July try to get permission from my insurance company to remove both of them at the same time and they said no because the chest one was not infected.
It makes no sense to me that they wait until it is inflamed and causing pain before they will remove it.  So, I have antibiotics for a week and then I am supposed to go back if it hasn't drained or went away.  It is hard as a rock and the size of a dime, so I am thinking it's not going anywhere.

See?????  I have so much wrong.  My body at about age 35 decided to turn against me.
I told the nurse today as she was trying to look over my records that I am used to the Copd and Emphysema.  I can handle the oxygen and all the meds.... but it's the little things now that drive me crazy.  It's like one more little tiny thing wrong that just is too much.  She said she had cancer and chemo a few years ago and knows exactly how I feel.  It made me feel better to know I wasn't being a cry baby.

Sorry for my absence

I went to my Pulmonologist today. For a couple weeks I have really struggled getting air in or out. I had already done the antibiotics and prednisone and it didn't work. He said I have been having an acute exacerbation and most likely alveoli are bursting. I am scheduled for more tests and a spirometry test in February. He put me on a new long term drug called Daliresp.  It has some real nasty side effects. 


He told me that from this point out there is little he can do to ease my pain and breathing issues without surgery. So... when things get bad from now on it means a hospital stay, or major pain medication at home. He told me to limit my exertion but to move about as much as possible. I think that was his way of telling me that exercise is out. I'll do what I can in my chair and with weights.

This just was quite a set back for me. Seems like when things begin to go downhill, it goes quickly.
 
All this and I still don't have my computer back.  I am not too adept at using my laptop for blogging.  I will try and do better and keep you updated on how things are going. 
Don't forget about me!  lol

Geese, Bulldogs and Steroids

Wednesday afternoon Bill and I took Priscilla down to feed the geese and ducks.  I was worried that Priscilla would just run at them and scare them off.... or, they would be too afraid because she was there and not want us to feed them.

Well, they came running at us... dog or not.  At first Priscilla was scared then she just stuck her pug nose up in the air and tried to get some kind of scent.  Evidentally she wasn't worried about them and they her.... however... birds and dog got a little pushy about the bread.  Priscilla wanted to eat it as much as they did, so she kind of pushed the bird/dog boundaries.

She started "talking" to Bill when she saw him throw the bread to the ducks.  lol  The "blue panties" is a diaper because she is in heat.  It has liners and can be washed and dried.  She just walks around like a little kid with a full diaper.  LOL

My girl has quite the pose!

I just love that squishy face and body!!

She was shaking her head.  This is best done outside anyway.  If anyone ever saw that movie Turner and Hooch... she gets those "shoe string" drools sometimes.  

A friend of mine after I posted these on my face book page said about this picture... Nice cleavage!  lol  

She is staring down the Geese.  I am surprised they were all so at ease with each other.

For the last 3 or 4 days I have been telling Bill that I just don't feel very good.  Less good than normal shall I say.  My chest has hurt more than usual, my breathing more labored, and when I do cough (which is not very often since I quit smoking) I have green sputum.  So I called my Pulmonologist's nurse who usually goes to the doctor and he calls in a prescription for steroids and antibiotics without me even coming in.... Unless I ask to see him.  Today I called and the nurse tells me he won't be in today.  My primary care doctor who I adore was leaving this afternoon to begin her maternity leave... so I went to the walk in clinic in the same medical center.  They just rotate doctors so all the patient charts are still there... very convenient and smart if your reg doctor is not available.

So... after ex-rays and an exam she tells me that it seems there is fluid in both lungs, more in the left.  Yep... Prednisone and Zpack antibiotics.  This time only for a week, which I found odd.  Maybe she just wanted to get me through the week and let me call my pulmonologist.  Which... I probably will.

I started the new meds today.  Of course a loading dose of steroids... 3 this afternoon, 1 with dinner, then 2 more tonight... and then 5 tomorrow and one less each day after.
I just never have only been on one week before.  Cross your fingers for me that this will work and I won't need more.  Maybe she is onto something here.

I tried today to just come home and lay around, but I can't.  I played online, took a nap, played online, did dishes, played online, at left overs for dinner.  Now I am blogging and thinking of bed.  I just feel spent.
Of course I doubt with the steroids I will sleep much.  Which means the rest of the week will call for naps.  Some people can take this and not experience too many bad side effects.  I find along with the lack of sleep, this makes dieting really hard.  I have no "full" meter when I am on these.  A few times, but rarely do I have swelling... other than my legs.  I get headaches and my anxiety levels are heightened.  A fun week.  Hopefully I will be feeling better and off of the drugs and effects by Thanksgiving and black Friday.

Here is what google says about Prednisone's side effects......

Trade Names: 

Although available in several branded formulations, prednisone is almost universally referred to by its generic name.  Prednisone is available in numerous orally doses. 

  Prednisone is a commonly used corticosteroid medication that is used primarily because of its potent anti-inflammatory effect by suppression of the immune system.  Corticosteroids get their name because the naturally produced steroid structured hormone in this class c called cortisol is produced in the adrenal cortex.  Another name for this class of medications is glucocorticoids.  

One of the major prednisone side effects, elevation of blood glucose levels, is common to this class of medications.  Typical medical problems treated with prednisone include asthma, severe allergic reactions, and autoimmune disorders like rheumatoid arthritis, systemic lupus erythematosis, and polymyalgia rheumatica.

Common Prednisone Side Effects with short term use:

Prednisone causes at least some side effects in a many patients.  

Many patients notice fluid retention often in the ankles, but sometimes all over.  Appetite tends to be increased, and weight gain is common even with short term use.  Anxiety, agitation and nervousness are also common prednisone side effects.  Insomnia can be a common result of these psychological prednisone side effects. 

Elevation of blood sugar is common, often leading to a diagnosis of diabetes in patients not previously known to have diabetes.   Suppression of the immune system is a nearly universal prednisone side effect, and is related directly to its mechanism of use.  This is usually not of clinical significance, but it can lead to delayed wound healing in postoperative patients.  Acid dyspepsis, gastritis and peptic ulcers are occasionally seen as prednisone side effects.

Here is what google says about Prednisone'sLoL  She kind of demands her time.  At least with me.  So... I am really looking forward to spending some time with her.  I asked the doctor if I was contagious and she said no.  So... I can breath on whom ever I want. 

I am going to do my best and be tough and drink lots of fluids, eat lots of soup and veggies and try to have a good weigh in this coming week.  I need a good weigh in, and these steroids could not have come at a worse time.  

I had a good friend tell me her messages are not showing up.  I hope this is a Google issue (I will look into once I feel better), please... trust me... I cherish every message I get... good, bad or otherwise.... so I would never delete any of you... except for rude or cruel messages.  So... Savannah Hun... hang in there with me and I will find out why your messages are not showing up for you.  I checked a couple blogs and your messages are showing up for me.  I will still look into it.  If anyone else seems to have comments disappear, please let me know.

I lean on my friends here as much as I do anywhere else, probably more because here I pour my heart and soul out.  I appreciate each one of the "looks" or "hits" I get, and always hope that someone took something away from my blog that might have helped them, or that they could relate too.

Have a good weekend.

My daily Medications

A simple, short post tonight.  A picture is worth a thousand somethings or others!  LoL  Told you my head isn't screwed on right lately!

2 Years ago I didn't have any medication to take.  I even refused pain meds after a failed back surgery because I hated taking pills so bad. 

This is one day now.  And, some of these medications I take twice a day.

Now, if you'll excuse me it's time to take my meds and go to bed. I still am not 100%. Bill and I went to Veterans Park this morning and I pushed myself as far as I could and didn't even get a mile in. There is just this stabbing pain in my left lung and with exertion it gets worse.


Until tomorrow friends................