HARD LESSONS

Tonight I discovered that even with an oxygen concentrator I do not have enough oxygen to change the sheets on my own bed.

RANDOM THOUGHTS

As of Wed last week I have completed every test.  I lost 10 pounds and I am now officially on THE LIST.  It's weird waiting for a transplant because you know in order to live someone else will have died.  I've always been an organ donor, and since I was told I have a very healthy heart I guess I could still be one someday if my transplant didn't work out, but to breathe with someone else's lungs......what a gift!  I think about dying a lot these ....how could I not?  Someone asked me if I'm afraid and I said yes, because I am.  I want to live for more than 72 years.  I want to see my grandchildren grow, I want to take care of Sara and Hank.  I want to see my son get married again.  I would like to walk along the beach at Siesta Key and see the sun set once again.  There's a part of me that is afraid that maybe it won't all happen.
In my mind I have planned my funeral which is very, very weird.  I will write it all down soon.  One thing that keeps crossing my mind, and it applies to very few people, but what I keep thinking is....if you didn't respect me in life, please don't pretend to respect me in death.  I have very few unfinished relationships, but I cannot fix what I did not break.  I find that extremely sad.

ME

It' s this kind of day.

                                                                                                                               

UPDATE 2

I have now completed every test, Xray, scan, and procedure for my transplant evaluation, except the colonoscopy......oh how I hate that one!  I went to Florida last week to tell my mom about the possibility of a transplant.  I told her I might not be down there again for another year or more.  Fortunately her dementia kept that bit of info from sinking in.  While in Florida I had a  oxygen concentrator delivered to the room I was staying in.  I was moving it over to an outlet and it tipped over and I fell on top of it.  I felt one of my ribs move and afterwards had a lot of pain.  An Xray didn't show much because my lungs are cloudy so the ribs do not show up well.  No obvious fracture, but most likely a cracked rib. Those things really hurt!  Taking a deep breath is a challenge!  I was told it will take about 6 weeks to heal.
 My need for full time oxygen has arrived which is one more thing to keep track of.  Trying to be positive here, but finding it harder than usual this week.

UPDATE

The heart cath went ok, except for the fact that a resident left a bruise on my arm that is of  humongous size. Got more info from my transplant coordinator after spending two hours learning about all that happens before during and after a transplant.  I will be on immunosupresent drugs for the rest of my life, also Prednisone...the drug I love and hate.  Love because it diminishes my joint pain, hate because it makes me so hungry.  Patients do gain weight post surgery, so I need to lose 15 lbs to give me some leeway.  Some of the other restrictions are as follows,  no beadmaking post surgery, ever again.  Now that makes me sad, but I like breathing more than making beads so I will just suck it up.  I cannot be in rooms with any kind of fans, no flowers or plants inside the house, ever again.  That's another sad one because I LOVE flowers.  HB will just have to plant lots of flowers outside so I can enjoy looking at them.  No alcohol,  which isn't a big deal except that I love a Cosmo every once and awhile. No cats and when my dog goes to the Rainbow Bridge we can't get another one.
I have more lab work and X-rays next Tues and have to have a colonoscopy ASAP.  If all goes well I should know if I have been accepted into the program within a couple of weeks.  Once accepted you must stay within 2 hours of the hospital.  That means no more Florida trips to see my 94 year old mom, no trips to St Louis to see two of our grandchildren.  My mom knows I have pulmonary fibrosis but she doesn't know about the transplant plans so my sister and I will be making a quick trip down there in the next two weeks.  This will probably be the last time I will be able to see my mom....that's a really hard one.  My mom has dementia so I hope she doesn't realize this.
This is monumental in so many ways. Sometimes I feel really good about it and other times it scares the hell out of me.

HEART CATH

Tomorrow is heart cath day.....scary!  I have a friend that had one and she says it's a piece of cake because the drugs they give you make it so you don't care.......hoping this is true.  Having it at 3 pm.

FIRST TRANSPLANT MEETING

On Monday I had my first meeting with the  transplant team.  They are very specific about what will and will not happen.  The oldest person they have transplanted lungs into was 73 at the time they did it.  She is doing well.  People seeking transplants must go through a battery of test including a heart cath, an echo cardiogram, colonoscopy, kidney function tests, miles of blood work etc.  This is to make sure that your organs a functioning well and can accept the stress put on your body as it adjusts to the surgery and the new lungs.  90% of transplanted people make it through the first year, 50% make it to five years. Some people have lived 10-12 years with a lung transplant.  The 50% at five years is kind of discouraging, but when you are diagnosed you are told that your life expectancy is 3-5 years.  I've already lived 2 of those years.  It is essential that you have a family team behind you as the recovery is slow and the patient needs much of assistance.  A patient is in ICU for 2-3 days and then in the hospital for about two weeks.  Afterwards there are many office visits and regular pulmonary therapy.  My son and I were impressed with the team.  They answered all our questions and I want to continue down this road.  After all the testing they could tell me I am not a candidate. If I am one I will be put on the national waiting list.  I really feel like I have nothing to lose, since this disease is going to kill me anyway.  If a lung transplant gave me 5 more years it would be wonderful.

This Monday I start a trial medicine that hopefully slows down the disease process.  2 out of 3 people will receive the actual drug for six months.  The others will get a placebo.  After the 6 month trial everyone will get the drug.  Something positive to do while I wait to see if I qualify for a transplant.....prayers appreciated :)

IT BEGINS

 So much has happened in the last month.  I went for my check up with my pulmonologist about a month ago.  My numbers were down, meaning my lungs are not functioning as well as they were since my last visit.  We talked about a new trial drug that my doctor is involved with.  He asked if I wanted to be involved in the study and of course I said yes.  While there I asked if I would ever be considered for a lung transplant.  The answer was that my numbers were low enough that I could be considered now.  NOW???  Good news and bad news.  Gosh, my lungs are now bad enough that a transplant is a consideration?  Scary, but then maybe good because at least there is some hope, right?  Would I want to do this......yes, yes, yes.  I want to live, I want to watch my grandchildren grow.  I want to see sunsets, eat ice cream, make more beads........, and so it begins.  On Sept 22 I go for my first meeting with the transplant team.  The evaluation is extensive, lab work, CT scans, heart catheterization, colonoscopy etc.  All used to evaluate my potential for being a candidate for new lungs. It will not be decided over night.
I was told I should take someone with me to the first interview, someone who could also ask questions and take notes  HB is so forgetful these days. He said I need to take someone else.  I have a good friend who is a nurse and I thought maybe I should take her, but then I thought of my son.  Oh  he probably wouldn't want to go, but he has a great memory, and he is the closest family I have here in Louisville.  I gave him every chance to say no, but he said yes, and that made me happy. So the adventure begins.  I am happy, scared, worried, excited, sad, all at the same time.

SOME DAYS I AM JUST A SLUG

WOW, can I procrastinate or what?  My poor little blog has just been sitting here and I have been ignoring it.  However, circumstances in my life have slowed me down, so I will probably be writing a lot more.  I am 18 months out since my diagnosis and I now know I have this disease on a daily basis.  Of course this may be due to the fact that this is allergy season, but I huff and puff more than I wish I did.  I have started making beads again, and selling them on Lampwork Bead Market.  I also started knitting and I am a yarn junky.  Knitting is good because it doesn't require much of your lungs, as long as you can stay awake and count, you are good to go.

My grandkids are growing.  They are 12 to 3 now and we all got to be together in Florida this summer for several days.  My 93 year old mom also got to spend some time with her great grandchildren.  The top picture is my mom with our daughter, my mom's oldest grandchild and the picture below is our daughter's son and our grandson, my mom's oldest great grandchild.  How cool is that?