Time for LVRS

I have been holding off writing this blog.  The less I think about it, the less real it seems.  Nice that I picked now to be a scaredy cat!  

I'll get to the essentials first:

On the 19th we will drive 5 hours up to Portland.  We will make one pleasant stop along the way to meet one of my friends from the "Ex" smoking site that I belong to.  I am really looking forward to that.
The 19th we will just drive and get to the hotel and rest.  
I am finding that for long periods of time the vibration of the car on the road bothers my lungs and makes me cough.  This is a new condition, or maybe not?  I really haven't had many long trips in a car until recently.

The 20th I have a meeting with the surgical staff to go over the surgery and what to expect, what can happen, and answer any questions.

The 21st I will go back to the hospital to have a pre-op visit and have most likely blood work, maybe some testing like MRI or Ex-Rays or whatever.  Then I am told to go back to the hotel and relax, eat a good meal and get a good nights rest!!!  LOL  I am sure I will sleep like a baby.

The 22nd I am to shower, wash and do my hair and this will be the only time in at least a week that I can shave my legs.  This has to be done around 4:00 a.m. so I can be at the hospital in the surgical unit by 5:30 a.m..
Surgery is to last 3 to 6 hours.  They will put 3 holes from my arm pit down on my side.  They will repeat this on both sides, then put one hole either in my chest or in my back.  These holes is how they will do the surgery.  They will be using camera's, suction, a cutter that has a stapler attached.  Then they will remove what they need to.  Try and make sure there are no air leaks, which is common.  

I will be in ICU at least one day, then taken to a private room where there is a bed for Bill or Brittney.  I think they are planning on taking turns staying with me.  They will have me up walking the first day out of ICU and keep it going a little longer everyday.  I will be sitting in a chair a lot.  Many people get pneumonia while recovering from these surgeries.  So I will be upwards as much as possible.

I don't really have many comments about this, except to say if something were to happen to me... Jesus look after my family and give them strength.

I don't want to talk to much about fear.  Because I have been prayed over and have healing in the lord.  I also truly believe that either way "I" will be fine.  Either I go to be with Jesus... or I come home to my family. It's my family I worry about.  So... I won't go on any further.  

Please keep me in your thoughts and prayers as well as my family and my doctor.  

A hopeful update

It's been a long time since I have blogged.  Shame on me!  There were times I wanted to come here and write, but I did not want to complain, other times I didn't feel well enough to spend time sitting here using my brain to come up with words lost to me.


So much has gone on since I was last here, so this may be a long blog.  Hang in there.... take a break and go for a walk if you get tired of reading!  ;)


I will start with my emphysema which is what started this blog in the first place.  I have had some rough times in the last months.  There is a terrible heavy pain that used to come and go.  Now it stays and I find myself taking pain medication and gritting my teeth through it daily.  (I dislike pain meds very much)  Because my lung function has declined so much now most of the new symptoms are showing up in my heart.  I am now told to use SALT.    For so long I had been dieting and had been told to stay off the salt, so it had been a few years that I wasn't using it.  Now I find out that it will help raise my low blood pressure (68/54) or a little higher most times.  
I was informed today by my Primary Care Dr. that when blood pressure gets that low it is trauma criteria.  Who knew???  When I get really dizzy or my head gets fuzzy I go lay down with pillows under my feet for an hour or so, and it slowly rises.  She told me I should be at the hospital then.  I know the procedure.... I go into the emergency room... they take my vitals, check for blood clots, ex-ray my chest, give me pain meds and after about 4 hours..... send me home.
I also was put on Digoxion and was told today that Monday morning not to take my meds and to go back to the Dr. to get a Digoxion level.  They think they may increase it to get my pulse rate down which still is running above 100 even resting.


My Pulmonologist sent me to Portland to see a CardioThorasic Surgeon about doing a Lung Volume Reduction Surgery.  It took a few weeks to get all the paperwork sent up and then the beginning of June Britt and I went up to the Oregon Health Sciences Medical Center.  The first day I saw the CardioThorasic surgeon and he went over my files and the testing I had done here by my Pulmonologist.  He told us that he hopes that one set of numbers is wrong, because if they aren't wrong then it means I have a lung defect which disqualifies me for LVRS and puts me right into a double lung transplant.
So he scheduled a full day of testing in July that I will go back up for.
Then the 2nd day I saw an OBGYN Dr. concerning my hysterectomy and fibroid tumor that I need removed.  She examined me and said that she would do the surgery, but first wanted me to see a URO-OBGYN, to see about putting a mesh sling in during the hysterectomy.  Having two surgeries at once would put less strain on my heart and lungs.  
I could not get an appointment with her then so I will see her in July when I come back for lung testing and hopefully scheduling this surgery.


The Cardio Dr. told me he was already made aware of this issue and suggested I have that surgery first so I would have time to heal and make sure there are no infections and everything is healed or healing nicely before he would mess with my lungs.


So actually I know nothing new... but I am now at the right hospital and talking to the right surgeons.  I am hoping my next appointments with them will help me get some answers and maybe even take steps toward fixing some of this.

So, I believe I mentioned in my last blog that I had started to go to church again.  I can't remember where I heard it but someone said they had also been a crisis Christian.  Boy I hope I am more than that!
I am a child of God.  I feel his spirit and have been healed.  I still struggle with this however.  God's goodness and forgiveness is sometimes hard to imagine in a world so much in chaos.  Our Associate Pastor ordered a small pocket book written by Dodie Osteen.  It's titled "Healed of Cancer".  
She writes about being diagnosed with metastatic cancer of the liver, and with or without chemo or surgery she would only have a few weeks to live.


She went home and told her husband and they began to pray.  She told her family she didn't want to hear the words cancer or death or sickness in their house.  She asked god for healing and god always gives you what your heart desires.  She read scriptures everyday, even as she felt the symptoms she would keep going... doing house chores, cooking, laundry and taking care of her family.  Continuing to pray and thank the lord for healing and speaking of his healing words which she knew were acting in her body, even on those days she lay in bed unable to get up.  She would push forward the next day.  
Having total faith, never wavering and when she doubted she would first tell the devil to stand away that god had her in his care.


She was sent home to die, but God had a different idea for her.
She was healed 100%.  Her doctors believe it was supernatural healing.    




So I read her book every day and pray the same scriptures that she listed for healing and even though I pray to Jesus for healing and thank him, every once in a while fear and doubt sneak in. 
I wonder why I am worthy?  I am because I turned myself over to God.  
I can say that I feel now so much more at peace and lighter.


My worries are just not there like they used to be.  It caught me off guard at the Dr. this morning to hear words like terminal and 3 to 5 years survival.  I had been all this time knowing that things were getting worse but just not paying attention.  
Now instead of fearing what is ahead, I need to believe the doctors have healing power.  That God promised it to me.  When I have those moments (which are getting fewer and fewer) I rebuke Satin and restore my love and trust to the Lord.
I am doing my best to live the life he wants me to.  After years away it is wonderful to be back and in a church that feels like home.  So, I don't consider myself a crisis Christian.  Just a child of God.


We went over Father's Day back to Bend to meet up with my brother and our cousin.  Every year we meet to have a little memorial and to catch up with each other.
We had a beautiful suite right on the Deschutes River, extra comfy bed and a fireplace. We'll go back there next year.  Everyone was so nice.

These are pictures of the spot where Mom, Uncle Jimmy and Aunt Donna's ashes were spread.  I love this cannon.  It is so peaceful up there!  I am not sure how many more years I will be able to make the climb, but I will go every year as long as possible.

So, after such a long silence...... I will be back to update after my Portland trip.  Sorry to all of those who follow my blog for the long absence.  

A hospital stay

It's been another week or so since I have written.  Let me see, where should I start?


A few day after my last appointment with my Primary Care Dr. I was playing with Priscilla on the floor... on my hands and knees bouncing back and forth on my hands and she would chase them.  I twisted wrong and felt a RIP and then immediately it started to burn.  It was pretty late in the afternoon so I just took some extra pain meds and went to bed.  When I woke up from a terrible nights sleep the next morning it was still burning like fire and I could not stand up straight, so I called her for an appointment.


I got into see her at 3:30 she saw the pain I was in... gave me 2 shots in each "cheek" and sent me to the hospital for a contrast CT scan.  Shortly after I was admitted.  This was Thursday.  For the next 3 days they gave me Dilotid (sp?) and (Demerol) and both made me terribly sick.  I had a terrible headache and was throwing up everywhere.  Finally Saturday afternoon I asked the nurse to get a hold of my Dr. and see if I could be taken off those pain meds and just put back on my normal pain medication (Vicodin).  Finally I began to feel better, I even ate dinner Saturday night, and came home Sunday evening.


I still have pain, she said a torn muscle will take some time to heal.  Of course with every sneeze or cough or sudden movement I want to crawl out of my skin!!  But, I am home and getting back to normal.


I went for my cardiologist appointment and he told me that I am showing signs of A-Fib.... which means suddenly I begin to sweat, feel dizzy and light headed and my blood pressure drops around 75/53.  All I do is for about 45 minutes to an hour I lay down with my feet above my heart and breath.  Eventually my blood pressure comes back up and I feel fine.  He thinks it is my lungs that is causing this.  He says so far my heart is healthy.  It is just reacting to things going on in my heart.


Then I went to my Pulmonologist appointment later that day and he said my sleep lab hadn't changed from 2 years ago, so all is good there.  His Respiratory Therapist told me she had talked to Stanford and they have sent my file to my insurance company for approval and once they have approval they will call me to come down for a evaluation.  


So, I am practicing patience.  I am not dwelling on being sick or having  pain.  I am doing my best to be kind to me every day.  I am still losing weight, however the stay in the hospital with all the fluid they gave me had me gaining 7 pounds.  5 of which I have already lost and I am back on the protein shakes and one meal of 4 ounces of protein with plenty of veggies.


Once again... with any new news I will let you know.

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

Low Blood Pressure and Cold Sweats

Yesterday was our Saturday overnight with Layla.  She looks forward to this every week, and even though I didn't feel great I told her O.K.  As it turned out Britt didn't bring her over until after 5:00.

I fed her dinner and got her bed and put it in my room then started feeling really sweaty, cold and dizzy.  I took my blood pressure and it was 90/62.  Low for me.  So I woke up Bill.  This was around 6:30.  He got up and had me get my Jammie's on and get in bed with my feet elevated.  He told Layla she could be my nurse and take care of grandma.  The both took my blood pressure until it got above 100 then Bill went to bed leaving Layla to take care of me.

She lotioned my feet and legs and told me I didn't even have to pay her for it this time!  LOL  She took my blood pressure about every 5 minutes until I told her it was almost 9:00 and her bedtime.  So, with her snuggled in her bed and Priscilla and I curled up in my  bed we slept until this morning at 6:30 when I heard a little voice saying... grandma can you turn on cartoons for me? This woke up Priscilla who began to roll all over the bed, which made Layla get up in bed, which left me no room so I got up.

Today my chest hurts.  I have that familiar pain mostly on the left side but more so in the middle.  At times it is sharp, other times just dull enough to let me know it is still there.  My blood pressure is bouncing from 100/80....good.....  to 89-90/74..... which is low.  so..I am just laying around trying to be calm and relaxed.

I don't know if this is part of the infection I had or have... or if it new?  I think it could have something to do with my Thyroid.  My neck and throat seem to really be sore the last few days.

We'll see next week when I hear from my Primary care doctor.  I'll try and keep up and keep you all informed.

More concerns

Today was my Thyroid Ultra Sound.  Bill was to go with me, but remember a call he needed to make so he couldn't make it.  This seems to be a pattern where my doctors visits are concerned.  I want him to be involved, to hear the steps I need to take, to hear the shape I am in, to know what to avoid and what is expected of me.

Any way... the Ultra Sound.  During the ultra sound the tech found a small nodule on the upper right side of my throat/thyroid.  She also found calcification in the middle of the band in the center of my throat.  She also found my lymph nodes enlarged.  What does this mean?????  That IS the question of the day!  She couldn't tell me.  She said my doctor would have the results this afternoon.

Of course me being a curious one...(not such a good trait at times) I got online and Googled "Thyroid Ultra Sounds/nodule/enlarged lymph nodes.  NEVER DO THAT!!!  Of course every article I found scared me.  And, Bill is sick and has been in bed since the afternoon... so I sit here concerned and trying so hard not to be.

It just seems like ONE MORE THING.  How many times do I need to say  ONE MORE THING?  It seems like for the last 3 years I have had to deal with just one more thing.  I am tired of things.  I am tired of worrying, not sleeping, being preoccupied and missing out on chances for happiness because I am so preoccupied with sickness.

I will wait patiently for my doctor to notify me of my Thyroid results and the outcome from talking to my Gynecologist.  I am going to practice patience.  I haven't had them so far, so we'll see how that goes.


I had a friend who I met on BecomeAnEx.org (the best quit smoking site there is) introduce me (through Face Book) with a man that has had a Lung Volume Reduction Surgery at University of Washington.  It has been about a year and a half he said.  He was not on oxygen prior to surgery and his oxygen saturation level was better than mine.  But he said he is doing fine.  That the doctors told him the surgery is not life saving but prolonging.  And, there could still be transplant in his future when the time comes.


This all makes me just want to get to Stanford and talk to the doctors, go through their testing and be reassured that my fears are viable and can be set to rest somewhat.  By knowing about small things like housing, traveling expenses, family accommodations.  All these things are things I worry about on top of the medical aspect.

I just feel odd tonight.  Like there is nothing I can do to settle myself.  I tried playing Face Book games, playing with Priscilla, talking to friends.  Nothing.  I came here to blog which usually lets me get out my feelings, frustrations and fears ... tonight not so much.

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.

FAQ for Lung Transplant

FAQ: Lung Transplant

• How do I know if I need a transplant?
• How will a transplant change my life?
• Is the evaluation very difficult?
• How long is the waiting list?
• What happens when an organ is available?
• Is the surgery very complicated?
• How long will I be hospitalized after the transplant?
• Do I have to stay near the hospital after the transplant?
• Will I have pain after the surgery?
• Can my family stay with me?
• When can I drive? When can I return to work?
• What medications will I take after the transplant?
• How long does it take to fully recover?
• Will my insurance pay for the transplant and follow up care?
• When do I get the beeper?
• Is there a support group for patients going through transplant?

How do I know if I need a transplant?

Some patients with severe lung disease may benefit from transplantation. Your cardiologist or pulmonary medicine specialist may refer you to a transplant center for an evaluation. The purpose of the evaluation is twofold: first, to determine the severity of your disease and whether there are any more conventional treatments; and second, to determine whether you would be able to survive the transplant operation and have a good long-term result afterwards.

How will a transplant change my life?

A successful transplant will dramatically improve your symptoms of lung disease. Many transplant recipients can perform the same physical activities and enjoy the same quality of life as normal people. All transplant recipients, however, are committed to daily drug treatment and close medical supervision for the rest of their lives.

Is the evaluation very difficult?

The transplant evaluation is very thorough. In addition to specific lung tests, tests are performed to determine the function of all the major organ systems, screen for infectious diseases and cancer, and try and predict how well you and your family will cope with the rigors of the transplant regimen. Many of the tests, even the complex ones, are fairly well standardized and can be performed in your local community. Some tests may require you to be admitted to hospital briefly. We require that every potential candidate make at least one outpatient visit to UCSF Medical Center to meet with the transplant physicians, coordinators and social worker. Typically, most of the evaluation can be completed within a week or two. The transplant team meets weekly to discuss patient evaluations and make decisions on appropriate treatment. Patients who are felt to be good candidates for transplantation are then put on a national waiting list.

How long is the waiting list?

Unfortunately the waiting times for organ transplants are long. In 1996 in the United States, the average wait for lung transplantation was over a year. Each patient on our waiting list returns for an outpatient visit to our transplant clinic every two to three months or more frequently if necessary. While many patients can wait at home, sometimes it is necessary for patients to be admitted to the hospital to maintain them in satisfactory condition until transplantation.

What happens when an organ is available?

When the transplant team decides that a potential donor is suitable for one of our recipients, we call their home phone number or page their beeper. It is not possible to predict when a suitable organ will become available and there is a limited amount of time to be able to recover the organs successfully. It is very important that we be able to locate the recipient quickly and get him or her into the hospital in a timely fashion.

Is the surgery very complicated?

This depends on your specific situation. The transplant surgeon will review the details of the surgical procedure, the risks of the procedure and the expected post-operative convalescence during the evaluation interview.

How long will I be hospitalized after the transplant?

This depends on your specific situation. Although patients can recover sufficiently after lung transplantation to be discharged within 10 days, it is more typical for patients to be hospitalized for two weeks or more.

Do I have to stay near the hospital after the transplant?

Most patients are discharged home after transplant. Although we do not have any specific requirement about staying close to the hospital during the early post-transplant period, the frequency of follow up visits and lab tests during this interval can be a problem for patients who live far away. The social worker can help you to locate guest housing in the area.

Will I have pain after the surgery?

Generally, most patients do not report a lot of pain. You will have an incision that does cause pain and discomfort when coughing. We will give you pain medication and specific instructions to lessen the pain.

Can my family stay with me?

Your family can accompany you until you go into the transplant surgery. While you are in the intensive care unit, family members may not stay in your room. If you require assistance with locating guest housing, a social worker will be able to help you. We have very open visiting hours and encourage family members to be present. If your visitors are ill (flu or colds), they should not visit you. This is to protect you from the infection.

When can I drive? When can I return to work?

You may drive after two to three weeks, once your incision is healed. You may return to work after two to three months from the transplant surgery

What medications will I take after the transplant?

You will be on three main immunosuppressive (anti-rejection) medications after transplant. Along with the immunosuppressive medications you will need to take several preventive medications against infection.

How long does it take to fully recover?

It generally takes three to six months to fully recover from the transplant surgery. Age and previous medical history problems may cause the recovery period to take longer.

Will my insurance pay for the transplant and follow up care?

We have a financial counselor who will verify your insurance. We will obtain authorization for your transplant and follow up care.

When do I get the beeper?

You will get a beeper after you are placed on the transplant waiting list. Since this is a free program through the LifePage Program, it may take several weeks for your paperwork to be processed and for a beeper to be issued to you from the local pager company.

Is there a support group for patients going through transplant?

We have a support group for patients on the waiting list and post-transplant patients. You will be notified of the support group meetings and the topic each month.

Reviewed by health care specialists at UCSF Medical Center.
Last updated February 2, 2012

This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.

Lung Transplant
Recovery

Once your surgery has been completed and the lung transplant is a technical success, the issue of successfully living with a transplant becomes quite involved. The two major issues are rejection and infection.

Lung transplant recipients undergo specialized rehabilitation programs. The transplant team follows patients throughout this process -- and for the rest of their lives. Patients are seen as needed in the outpatient clinic. A transplant expert is available 24 hours a day, seven days a week for questions or consultation.

Rejection and Infection

Rejection is the natural process of your body that recognizes your new lung as being foreign to the body and attempts to destroy it. This reaction originates within your immune system. This is similar to the way your body identifies a splinter in your finger as a foreign object. The redness and inflammation in the area of the splinter is an immune response. To prevent rejection, you must be treated with immunosuppressants, medications that interfere with the body's normal immune response.

We expect that you will have episodes of rejection in the first several months after transplant. The treatment requires that you receive doses of the anti-rejection medications intravenously. You will require frequent blood sampling to determine the levels of immunosuppressant drugs, as each individual is unique and requires an individualized approach. The goal is to find the lowest immunosuppressant dose that will prevent rejection and therefore minimize the risk of infection and side effects from the medications. Failure to take these medications will result in the rejection of your new lung.

Because your immune system is suppressed to prevent you from rejecting your new lung, you will be more prone to infection. We will monitor your temperature for sign of infection and your count for white blood cells, which help fight infections. Infections are generally treated with antibiotics and you will be asked to take certain medications on a regular basis to prevent certain types of infection. You may have to undergo intermittent short courses of intravenous antibiotics. The signs of infection are redness, swelling and tenderness at a surgical site. A new lung infection may begin with a mild fever, new cough and change in lung secretions.

Reviewed by health care specialists at UCSF Medical Center.
Last updated February 16, 2012

Lung Transplant (procedure)

Lung Transplant... Procedure

You can be called into the hospital for the transplant at any time. When the call comes, you will proceed to the Intensive Critical Care Unit (ICC) to prepare for surgery. Then you will be transferred to the operating room.

The surgery takes from six to 10 hours, depending on medical conditions. After surgery, you will go back to the ICC. From there, your are transferred to the cardiothoracic nursing unit, depending on your condition. The expected length of stay for an uncomplicated lung transplant is eight to 21 days.

If you are having a single lung transplant, the incision will be made on your side, either right or left, about six inches below your armpit. Your old lung will be removed through this opening and the new lung will be implanted. In the case of a double lung transplant, the incision will run across the lower part of your chest. The lung, whether single or double, is connected to the pulmonary artery, pulmonary veins and the main stem bronchus or airway. The incisions will be uncomfortable and will take several weeks to heal.

Lung Transplant (evaluation)

Lung Transplant
Preparation

Evaluation

Patients must meet a broad range of physical and psychosocial criteria to become eligible for transplantation. A social evaluation determines if transplant candidates have the psychological stability, motivation and personal support to meet the challenges of transplantation. Then the patient and family meet with the team of experts who will be with them throughout the transplant process.

Each patient's team includes a transplant lung specialist called a pulmonologist, transplant surgeon, transplant nurse coordinator, transplant social worker, psychologist and physical therapist.

• The transplant pulmonologist completes a physical examination and determines the cause of disease during the selection process. The pulmonologist reviews the patient's current medications, assesses the risks and benefits of transplant surgery, and makes recommendations to the team. In conjunction with the team, the pulmonologist remains involved throughout the transplant process.
• The transplant surgeon completes a general surgical evaluation, reviewing any previous operations and assessing the risks and benefits of surgery. In consultation with the other team members, the surgeon makes recommendations for transplantation. The surgeon follows the patient before transplant, performs the transplant, and continues following the patient post-operatively and after discharge.
• The thoracic surgeons who perform the lung transplantation will meet with you for a surgical consultation. They will discuss any previous abdominal or chest surgery that you may have had and describe the surgical plan for your transplantation. The thoracic surgeon reviews your medical plan-of-care daily with the surgical resident and nursing staff. Additionally, he or she will see you in clinic after discharge.
• The transplant nurse coordinator organizes all aspects of care before and after the transplant. The coordinator oversees the selection process and facilitates communication among all members of the team. In addition, the coordinator provides patient education, coordinates testing and follow-up care and maintains records.
• The insurance coordinator reviews the patient's available insurance to ensure that the patient will not experience financial hardship related to the transplant or postoperative and discharge care and coordinates insurance coverage with outside case managers.
• The social worker completes a psychosocial evaluation and provides support to the transplant patients and their families throughout the process. The social worker also makes recommendations to the team regarding the patient's psychosocial status, commitment to transplantation, and relevant financial issues.The social worker for our Lung Transplant Program will meet with you to review the program in detail and to provide any patient educational assistance you will require preoperatively.
• Long-standing lung disease can strain your heart so you will need to be evaluated by the transplantation cardiologist. He or she will examine you and will also review your medical history, electrocardiogram and echocardiogram. The cardiologist may recommend that you have a further study of your heart with a procedure called a cardiac catheterization. This procedure will be scheduled by the Division of Cardiology and may require an overnight stay in the hospital.

Persons with cystic fibrosis are required to consult with an ear, nose and throat specialist. If minor sinus surgery is required, a short hospital stay is arranged. Several other team members conduct appropriate specialty evaluations when indicated and make recommendations to the team. These include but are not limited to the anesthesiologist, cardiologist, psychologist, intervention counselor, infectious disease specialist, hematologist and physical therapist.

Transplant candidates undergo a battery of tests that may include routine blood work, electrocardiogram (ECG) and other radiological and diagnostic procedures. UCSF Medical Center uses state-of-the-art imaging technology to obtain the most accurate diagnoses. After the medical work-up, our team designs care plans for each patient, drawing on resources from a variety of disciplines, including social work, nursing and nutrition. Patients are never out of touch with the team: an expert who knows about each case is on call 24 hours a day, seven days a week.

Eligibility

To be eligible for a lung transplant, you must meet the following requirements:

• In general, you must be physiologically 60 years of age or less for bilateral lung transplantation and 65 years of age or less for single lung transplantation. This means that your physical condition must at least meet the typical condition of someone 60 years old or younger, or someone 65 years old or younger. Your chronological age is not a factor.
• You must have a poor prognosis, with an anticipated 18 to 24-month survival.
• You must have no other life-threatening systemic disease.
• You must have demonstrated absolute compliance with medications and medical recommendations, and have good rehabilitation potential.
• You must demonstrate emotional stability and must have a realistic understanding of the implications of organ transplantation.
• You must have a supportive social support system.

Once all the interviews and tests are completed, the members of the transplant team review the information and make a recommendation about treating your lung disease. They may suggest further testing or other therapies prior to considering a lung transplant. It is important to remember that lung transplantation is not appropriate therapy for all patients with lung disease.

Waiting for a Lung

If accepted as a lung transplant patient, you will join many other patients who are awaiting a transplant. You will be seen on a regular basis to monitor your progress. If you are not accepted initially as a lung transplant candidate, the reasons for the decision and any further testing and therapeutic options will be discussed with you and your referring physician.

As a result of your lung condition, you may have several associated problems that must be addressed. These include:

• Shortness of breath and increased oxygen need.
• Decreased activity level.
• Wasting of your muscle groups including respiratory muscles, postural or trunk muscles, and your arm and leg muscles.
• Cardiovascular deconditioning.
• Fear or anxiety due to breathlessness.

Evaluation in a pulmonary rehabilitation program is essential if you are considering transplantation. It is important that you be in the best physical shape as possible at the time of your surgery. Lung transplantation will improve your shortness of breath and oxygen need. Therefore, you will be introduced to the importance of exercise and activity before your transplant. This will include training your respiratory muscles as well as a biking or walking program for general conditioning. You will need to continue this program even after your transplant occurs.

We also require all patients to have an annual flu shot, a pneumonia vaccine, up-to-date tetanus shots (within the last 10 years) and H.influenzae B. vaccine.

After being approved for transplantation, patients are immediately put on the United Network for Organ Sharing (UNOS) lists. Your placement on the waiting list is determined by the severity of your condition and the likelihood that your transplant would be successful, known as your lung allocation score. Those with higher scores get higher priority when a compatible lung becomes available. During the waiting period, UCSF Medical Center provides a network of support for patients and family members, including a long-running, popular support group.

A new lung or lungs will come from a person who is an organ donor. This person has suffered an injury to the blood supply to the brain, which results in "brain death."

Organ procurement organizations work to match donors with people who are awaiting transplants. This matching is based primarily on the size of the donor and the blood type and is started through a computerized listing created by UNOS. A transplant team removes the lungs from the donor and brings them to UCSF Medical Center. While this is happening, you will be notified to come to the medical center. You will then be transferred to the operating room where an anesthesiologist will prepare you for surgery.

Reviewed by health care specialists at UCSF Medical Center.
Last updated February 16, 2012