More meds but no word from Stanford yet

It's been a week again.  I am sorry for not keeping up on this better.  It is Spring Break and so we are helping Britt with Layla more.  She exhausts me.  In a good way most days.  She is a only child (more or less... Fernando has a daughter who is hardly ever around) and so she demands attention and doesn't play by herself very well.  So, we read, we color, we watch her cartoons, we play ridiculous singing games.  


I am not sure if I mentioned in my last blog that my blood work came back showing my thyroid levels were normal, but that my iron levels were very low.  
Also, my CT scan for the Thyroid came back good only showing that my right lymph node was enlarged.


So, I went to my Primary Care Dr. yesterday afternoon.  Like every time I have an appointment with her she cracks up at me.  Nothing with me is ever normal.  She cracked up about the "2 week" thing I seem to have going on.  Every doctor, nurse, hospital says I will hear from them in "2 weeks"!    
She increased my iron to twice a day for a month, then I'll have more blood work to see if it is rising.  She found a long acting medication to take the place of Vesicare... I only take it once a day and it is supposed to not have the dry mouth side effect.  I am waiting for my insurance company to approve the new drug.


She examines me and thumps on my forehead, cheeks and feels my throat, looks in my ears, makes me say AWE and tells me I have a severe chronic sinus infection and an infected lymph node on my right side.  Which would explain why my neck hurt.  She still wonders why my throat feels like it is hard to swallow, or my throat is narrowing.  This could have something to do with my infection.
so... I am on anti-biotics (horse pills) for 30 days possibly longer.


Then she asks me about my problem with my Gynecologist?
I told her that I liked him when I had my first visit.  He made me feel comfortable during his exam, and then took probably 30 minutes or more talking to me.... which I greatly appreciated.  Then he scheduled me for the pelvic ultra sound and found the fibroid and enlarged uterus.  But I never heard back from him or his office.  I had to call his office for an explanation and then I didn't hear any news only that he wanted me to go to the Urologist in Medford.  And, even then I had to hear all the results from my Primary Dr..  So, I told her my problem with him is just not hearing back from him and feeling like I have to be a mind reader to find out any information.
And, I told her I feel like he is afraid of me.  I heard from some Dr. (I can't remember who) that he thinks I need to be sent to a much bigger hospital with a good respiratory department to undergo ANY surgery because of my lung damage and the real possibility that I will have problems coming off of a ventilator.


So, she (my Primary Dr.) tells me that she would prefer a surgeon who is cautious and knows that I have a problem being put under for surgery.  That she agrees it would be frustrating not hearing from him or his staff regarding results... follow up appointments or something, but she said she would call him and discuss what is to be done.


I mentioned to her that the more I lose weight and my "middle" shrinks the more the tumor is bothering me and becoming painful.  There is less fat for it to snuggle into and I have this lump that looks like a baby bump!  lol


I have an appointment tomorrow for a Echo cardiogram and then a follow up appointment with my Cardiologist next week.  Also next week I have an appointment with my Pulmonologist to go over the results of my sleep study.  The following week I have an appointment with my Dentist.  Whew.....  Dr.'s Dr.'s Dr.'s!!


Tuesday I made an appointment to get my hair cut.  It needs it so bad.  All this medication is killing it and making it even straighter if that is possible.  Plus it is just dead and dull.  So, I am looking forward to that.  


I will proudly say that I have went from a size 3x or 22 to a size 16 and those fit well, so I might even drop down another size soon.  :)  This makes me very happy.  I needed to be at a lower weight for transplant and I am there.  Of course I am on the high side of alright, so I have room to lose much more.  


Church is continuing to bless me.  My dear friend Kathie gave me a beautiful gift of a Woman's Study Bible, and she put tabs on it for me, so I can actually find what we are studying.  Which reminds me.... my Primary Dr. asked me if I had gotten a hold of a counselor and started counseling?  I said no, but I have started going to church which has helped with my stress and anxiety. 


O.K. ..... I think that catches us up once again.  I will as always keep you updated as I hear anything.

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.

Still waiting

Just to fill in time waiting I'll fill you in on my daily life these days.

Last night I had another sleep study.  I got there at 8:30 and by 9:30 the tech had me all wired up.  They did the study with me off of O2, which I have to tell you made me very nervous.  The tech told me they would be monitoring my O2 levels and give it as needed.
I woke this morning craving air, not dizzy, not fuzzy... just craving the air getting pushed into my lungs.  He told me I would be hearing from my Dr. and I was home by 6:30.

I went to church again Sunday and there was a different person giving the sermon.  She was amazing.  She got up in front of us and said she had taken notes about what she wanted to talk about, but for some reason Jesus was telling her to go a different way.
So she came in front of me and began.  She said that I should not feel guilty about coming back to Jesus, that he never left me, I just got lost, but found my way back.  That all I have to do is just open my  heart to him and he will take over.
I felt blessed!

I know I am a babe in Christ.  I shouldn't have worry, or fear or doubt... I should trust him that things will happen when they are supposed to. ..... However... I am human and I can't stop dwelling on A Phone Call that I don't know when will come.  Or will it be a letter with a bunch of paperwork for me to fill out?

Will I get down there and find out I don't qualify because I am not yet bad enough for surgical help?

If or when I hear from A doctor I will update.  Until then I plan on hanging out with Layla and Priscilla.

Another update. File on it's way to Stanford

So, life has gone on as usual.  Me going to Dr. appointments and always waiting for answers which seem like they never come when they are promised.

I am just very frustrated.

My last Pulmonology appointment the respiratory therapist told me I should hear from Stanford within 2 weeks of them getting my file.  I even asked again if it would be 2 weeks?  Or should I be more realistic and think about a month or so?  No... she said 2 weeks.  That was on the 4th.  Today is the 9th and she just called this afternoon and told me she just sent my file, so I should hear from them soon.

I have seen the Urologist like everyone wanted me to, and he told me what I have is a large tumor 4-5 pounds pressing on my bladder and has been there growing along with my symptoms for 5 years or so.  It needs to be removed along with my uterus.  To do that and put me on Vesicare my urine leakage problem will be solved.

I went yesterday for blood work at the hospital and today I went in for a contrast CT scan of my thyroid which she described as several small goiters.  Goiters?  Really?  First I had heard of that.  Anyway, who knows what will come from this.

My daughters best friend since grade school (who is like my own daughter) works at a mortuary.  Actually Brittney just went to work there part time in sales to make some $$ while still going to school full time.  Any way, they both came over yesterday and I bought a cremation package from them and bought a plot for Bill and I.

I have written my will and had it notarized.  I have my advanced directive in place and my life insurance policies paid up.

I am remaining positive.  I know it sounds like I am getting everything in order for me not to come home from surgery.  Nope.  I just want to have everything in order so I will have no worries.  I have lost both parents and both times had my step mother and father steal everything from me and my brothers.  My parents weren't prepared at all, had nothing in writing and their wills were a joke.  So... I am just being careful.

I have felt TERRIBLE the last week.  Every since I had that lung infection (I am still on the steroids from then) I have had that pain in my chest terribly.  And, the last 2 days my normally on the high side blood pressure has been really low.  I have cold sweats, then get freezing and then hot.  My hands shake so bad I have to be careful when I pour things so I won't spill.  

Today I actually was relieved to hear my file will be looked at next week at Stanford.  Like I said though I still have no delusions that I will hear from them soon.  If I hear within a month, I will be o.k..  Until you have been the one waiting and waiting to be seen and evaluated and hopefully be made better... you really don't know how exasperating it is and how it takes all your energy just to wait for something that your not even sure what it is.

It's getting to the point where I am taking my meds and going to bed earlier and earlier so I can just get another day past.  Pretty sad isn't it?!  I should be doing all I can to enjoy these last few days prior to surgery.

There are so many unknowns I can't even think about them anymore.  I will get my answers when I get there and have no choice but to be patient until them.  I have to let Bill and Brittney do some of the worrying about our house and dogs.  I want to focus on surgery, therapy, and healing.

As always I will keep you updated.

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