Just sad

My daughter is home from university for the winter break.  Believe me, I'm so happy that she's here.  But it does take some getting used to.  My perfectly clean, camera ready house is messy. Her bedroom door will remain closed at all times until she goes back to school (I was like that as a teenager, when I was her age I was engaged to be married!).  We had a nice day together yesterday, doing some shopping and, she is not a very patient person but she was great, walking slowly beside me as I do in the cold, shlepping the oxygen tank over my shoulder.

 I suppose that I am a little  depressed that I still have the oxygen.  I thought for sure that I would be rid of it by Jan. 1st.  Now I'll be lucky to be rid of it by the spring.  In May my son will be working in Vienna and we plan to visit him. I really don't want to be doing it with an oxygen tank.  And my thoughts leap to the summer, where I spend a lot of time at the cottage simply because the air is cleaner than in the hot, humid city.  Will I have to arrange for oxygen to be brought there as well?

16 Years

Yesterday marked my 16 year "Lungaversary".  Both of my kids (who are away at school/work) messaged me and said some really nice things.  My son wrote, "I think it's incredible and I really want you to know how much I love and appreciate you". My daughter wrote, "I'm so proud of you every day". I had my transplant when they were very young, my son was 7 and my daughter was 4.   Their messages yesterday reminded me of how far we have all come and that they are now mature adults.

Although sixteen years is a long time it's kind of anti-climactic because I am still on oxygen.  A couple of days ago I had my yearly assessment.  This involves blood work, a chest x-ray, a 6-minute walk test and breathing tests all followed up with a clinic visit with the doctor.  Even though each patient is assigned to a doctor doesn't mean that is the doctor you'll see when you come in for an appointment.  I haven't seen my assigned doctor in over 2 years. But I did see the doctor who read my CT Scan back in October and did a bronchial wash due to the fungus that is growing on my lungs.  A bronchial wash involves swallowing a device that basically washes out your lungs ("like a car wash", my husband says). My low lung function made the procedure risky and is what landed me in the hospital for over two weeks back in October.  When he went over my results he pointed out that my lung function is still very low and even when the fungus has been resolved I have chronic rejection.  Most patients have some chronic rejection but mine is getting worse.  I asked him if even though when the fungus goes away will I still need oxygen.  He said he didn't know.  I am exercising like crazy which is the only thing that I can do, I have no control over the rejection. Is this going to be the new normal for me?

A Wonderful Monday

When I first became ill with my lung issues my children were two and nearly five.  My husband and I married very young (I was 21!) and were subsequently the first of our circle of friends to have children. This turned out to be basheret, the Yiddish term which means "meant to be".  I f I hadn't had my kids so young I wouldn't have any at all, given what happened to me.  Back then we hung around with many members of our university friends, mostly those who were in my husband's fraternity and their girlfriends.  Our little one was almost like a mascot that we took with us to bar-b-cues and pool parties and restaurants.  As those girlfriends became wives our son was the ring-bearer in two weddings.  One couple in particular, the guy who had actually gone through elementary, junior high, high school and university (also a frat member) always stopped by on his birthday.

 I became ill two months before my son's fifth birthday.  I didn't know what or where I'd be so I started planning his birthday party well in advance.  I did it slowly, booking a gymnastics studio that offered birthday parties, gathering matching superhero tablecloths, plates and napkins and assembling the loot bags.  As it turned out, his birthday fell on a Sunday.  I was in the hospital for the first of what was to be many stays due to a collapsed lung.  I think that I had just had a feeling that something might happen to me and I didn't want my son to miss having a birthday party.  That morning, that same couple who dropped by annually to smother my son in hugs and kisses and piggy back rides every year dropped by our house.  They saw my husband, trying to get two kids dressed and out the door complete with all of the pre-purchased party supplies.  "What's going on? Where's Jodi?" They asked.  When my husband told them they said that they were sorry to hear that.  We never heard from them again.

Yesterday, I had the pleasure of hosting lunch for two of my oldest friends, one who had flown all the way across the country from Vancouver.  As I sat there with them, me with my oxygen prongs in my nose I had so many emotions.  Regret, that we didn't see each other often enough. Joy, at being able to talk about everything that's going on in our lives and I mean EVERYTHING!  Relaxed, because with old friends you don't have to put on a "show" (even though, as my daughter says, "you like the house to look like no one actually lives here!) and just sheer happiness.

Whether it's an illness, a loss in stature, a divorce, or G-d forbid a death, you really find out who your friends are.  Those you can call when you're in a state of panic or just need to vent or cry.  Just something to think about.  Some people may surprise you and others, well, that's their shame to carry.

Very Proud

On Friday afternoon my husband and I drove to Kingston (about two and a half hours from home) where our daughter attends Queen's U.  We went to watch her perform in the Queen's Dance Club recital.  Given what's happened to me in the last little while I didn't think I could go because I am on oxygen.  I knew that I could travel there on a portable tank that I fill with a unit at home but once I got there and the portable unit had run out than what?  I contacted the company that supplies the oxygen and they were more than happy to have a unit waiting in our hotel room.  My daughter and even my husband didn't expect me to come.  However, I have missed the last two recitals and I know my daughter was extremely disappointed.  I was determined to go.  The morning before we left my daughter texted me, "how are you feeling today?" I know that meant that despite her best efforts she was really hoping that I was going to be there.

I think that maybe I recovered well enough from my recent hospital stay just so that I could go to see my kid.  First of all, we haven't seen her since the middle of October and the show was fabulous.  Our daughter (little bragging here or as Jews say, "Kvelling") is extremely talented.  She is always from and centre in every dance.  But what impressed me the most was the tap class she choreographed and taught.  Not all dancers can dance and teach.

We came home last night and I was showered and in bed by 9:30.  Travel makes me tired and I was wrecked.  But it was so worth it!  I'm not only proud of my daughter but of myself.

Just wanted to share these thoughts

I have two things on my mind today that I wanted to share.

 First of all, our family was fortunate enough to be able to singled out as a contributor to Jewish National Fund's Book of Life.  The book chronicles stories of Jewish families, how they came here before, during and after World War II.  Each page is devoted to a particular family's history and how they got to be where they are today.  Yesterday I, as the writer in the family (although my daughter is my editor and is becoming a far better writer than I think I am), sat down with my in-laws and interviewed both of them.  I have been married to their son for over 26 years. Didn't know at the time that I wasn't just marrying him but his whole family which, as it seems, turned out to be a blessing. But I digress.  I knew most of the family history and stories already and came prepared with questions but it felt so good to write it down on paper; to know that it will be published and therefore available to future generations.

The other thing that's been on my mind for awhile is my kids.  My son is 23 and my daughter is almost 20.  Maybe because of my health or maybe because they were raised in this village we call our family, they are both very astute and not afraid to speak up.  They tell me what they think I should do in certain instances. I'll give you a small example.  My husband's surgeon (see a previously blog entry entitled "The Hip") told him that a recumbent bicycle would be the best kind of rehab for him.  In my present condition a large part of my recovery and getting off of the oxygen is exercise.  When one has a lung transplant (and probably a heart as well) fifty percent of a successful recovery and prolonged life span is exercise, the other fifty percent being the anti-rejections medications.  But again, I digress.  My son told me to wait until Cyber Monday to buy the bike but I bought it on Black Friday.  Of course he was right and I could've saved us about $130.  I asked my mother-in-law how it feels to have your children give you advice.  She told me that she looks at it like she has "staff".  I need to get into that mindset.

And I rode that bike for twenty minutes this morning!

Friends

I have been home from the hospital for almost a month now.  I am still on oxygen but only when I am showering, exercising or going out.  Last Thursday I actually went and met my "cousin" for coffee and picked up a few groceries.

I exercise daily with hand weights doing chest expansion exercises to strengthen my lungs.  I use a spirometer (google it, as my husband would say) while I am watching TV.  We await the delivery of the recumbent bicycle I bought last week.  It is good for my husband's hip as well as cardio for me.  I quite possibly can exercise my way off of the oxygen.  However, I have no control over the underlying fungal infection on my lungs and it's progress.  When I picked up a re-fill of the medication for it last week ($1200.00, by the way), I asked the pharmacist how long patients usually remain on this drug.  He told me it was three to six months.  All I can do is exercise and take my medication, the rest will remain to be seen.

Last Saturday night we had a friend over that we hadn't seen in well over 15 years.  I am dedicating this blog to her because she pointed out the following:

Since I have been sharing my life with the world via this blog it has caused a lot of people that I have not seen or heard from in years.  I spent an hour on the phone last Sunday with a friend from Edmonton who I haven't spoken to in 30 years.  Another woman who I went to university with and was a close friend at the time called me.  It's not like we had an argument and our friendship dissolved.  Life just happened.  I get messages on Facebook from people from my past and my present after I publish a blog entry.  A few friends from summer camp, girls who I shared a cabin with from the age of 8 - 18 for two months every year, have contacted me.

Needless to say, all of this makes me very happy.  There's no friends like old friends, especially for someone who is living in a city other than the one they were raised in.  I don't think that people who have been born and lived their whole lives in one place can truly appreciate the magnitude of that.  Or maybe it's just me and my circumstances.

And so it continues...

Now it is November and two months since my husband's hip replacement.  Last Monday he went back to his regular routine of seeing clients which means in and out of the car countless times. On Sunday he drove to Barrie, about forty-five minutes away for a meeting just to see if he could do it.  He had his post-op appointment and the doctor was very pleased.  However, because he was in so much pain for so long with his left hip he relied on his right hip. An x-ray of that shows that it too will have to be replaced in about a year. But right now, today, he's doing well.

In the midst of all of this I got sick. In taking care of him I probably wasn't taking care of me. I developed a bronchial infection of some sort that left me coughing and gasping for air. I know that when this happens what I need is oxygen and the oxygen is at the hospital. At 11:00 at night I called an ambulance. Tip: In Toronto if you need to go to the emergency room the fastest way to be seen there is to go by ambulance. First of all, there is oxygen in their truck. They do triage in the truck as well and once you arrive at the hospital they cannot leave you until you have been seen by a nurse. You are their responsibility (plus you're on their gurney) until someone in emergency sees you.

Anyway, I was put in an isolation room (due to the cough) and hooked up to oxygen. Now, I have had a lot of nasty things done to me but the absolute worst, for me, is the IV.  I have small veins that roll away when poked and sometimes it takes several tries (ouch) to get an IV in me. (After all of thiswas over I found out that I even had one in my leg which means it must have gotten nasty at some point.  I responded to the anti-biotic for the bronchial infection within 48 hours. But underlying that was a fungal infection growing on my lungs. This was spotted almost two years ago but all the docs did was send me home with a puffer.  My lung function has plummeted from 1.18% to 0.75% in the last two years.  It is the reason they hesitated to do a bronchial wash on me. A bronchial wash means they numb your throat, make you groggy but not asleep and feed a tube down your into your lungs and literally wash them.  However, someone with low lung function can respond negatively which, of course, I did. I had to remain in hospital on a breathing tube for several days.

I am home now but with oxygen.  This, to me, is a huge step backward.  I haven't had to be on oxygen in the 16 years since my transplant. So I am exercising as much as I can to strengthen my lungs and get off of it. It's not easy but anything worth having never is.