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?
Wednesday 28 December 2016
Saturday 17 December 2016
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?
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?
Tuesday 6 December 2016
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.
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.
Sunday 4 December 2016
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.
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.
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