I don't really think people understand what's fully involved in it and if it were me who got the transplant I guess things would have been a bit different because I have a vehicle and a valid license. My dependence would purely be emotional. The mechanics of getting to and from appointments I would have been able to handle on my own post transplant. However this is not possible for my mother and it seems that there are people with expectations that I am somehow able to just drop the support all together. Do these people realize that during the evaluation process, part of the process they use to choose you as a viable transplant recipient relies heavily on what kind of support you have around you. If they do not see a strong support leg, they simply won't put you on the "list". I hate calling it a list because this simply isn't true... Yes, you are put into a database, your name and other various credentials. However it's more than that... You need to be matched by many variables, and one of those must be a connection to God in some way. Anyhow I have strayed somewhat from the point I wanted to make. Really, I guess it's more of justifying it to the people around me who have put those negative vibes out there, I don't feel I owe an explanation but since I am pretty sure they don't read my blog. In fact they have very little interest in what I have actually accomplished, I believe it is safe to release it from my psyche.
The following is meant to give a rough timeline and explanation of what made us who we are today, all to just give a rough time line... All the living will fill in the blanks naturally and I will assume you have enough imagination to do this.
Try to stay awake if you can...
19 years ago, I am a teen growing up in a single parent home. Things are seemingly OK, my mom's been diagnosed with something called Alpha 1-antitrypsin deficiency (α1-antitrypsin deficiency, A1AD or Alpha-1) which is a genetic disorder caused by defective production of alpha 1-antitrypsin. Ultimately a gift left behind by my Viking ancestors.
14 years ago, I meet my wife. I won't include all the details but know that she becomes my oasis. And coequally I am hers. As with most teens, our families are foreign to us. We can't seem to understand how we could possibly be part of the strange clan bestowed upon us by God the almighty. An event that happens in the blink of an eye but lasts for a lifetime.
11 years ago despite being affected by a family member's mental illness, the physical illness of my own mother, the alcoholic fathers my wife and I both commonly remember, and the sexual and mental abuse endured as a child, we somehow found a way to move past it all. My wife and I do not drink, do not smoke and generally have always tried to respect people. Sure, there are people who don't like us, we aren't the most social creatures on the planet. Heck we rarely call our own families on the telephone and some of them live on the same damn street as us. If you ask them they may say that's entirely our fault, my wife and I are both of the opinion that it takes two to Tango and we are perfectly happy sitting along the side of the gymnasium waiting for our turn to dance. My wife and I have each other, in one of the strongest bonds love can weld together. We accept each other for who we are, and so. My wife and I got married, first child on the way already, we had bought a house. Well not much of a house, it was a bit of a dump, but it was our dump and we were proud to have bought it with our own money. I was working full time, most days 14 hours long as a cleaner because I lacked the education to get anything better.
And so we were raising our kids, in the little broken down house, along came my grandmother who broke her hip once, then twice. Becoming more frail as the time passed. My mother's illness getting worse, we asked her to come live with us and I think that was about a year after we had bought the house but I can't remember. None the less we ended up living in a very small house and there really is only one person who I can credit for having the strength to let this happen. My wife... In any relationship if you don't both agree it's the right thing to do, then you shouldn't do it. My wife and my mother hit it off from the start. For some reason I think my mother offered something that she did not get in her own life although I am not sure what that is. And my mom was becoming more dependent but was still healthy enough to help us raise the kids so it just sorta worked...
10 Years ago, still living in the broken old house, my mother's condition leads the doctors to prescribe oxygen for her. Originally she thought it was only for a few months until the infection cleared up. Well that's not what her Alpha1 had planned for her. No, soon enough, and over the next few years, her oxygen usage gradually increased from 1.0 litres to 4.5 litres at the time of transplant.
5 Years ago, in and around... I am not exactly sure when... My wife and I were really getting frustrated with the current situation. As you can imagine, having all these responsibilities, a family becomes stressed. We puttered along, pretending nothing was wrong I had moved through a few decent jobs and experimented with working with my brother in law in Brampton. Took a trip out to see him and performed some trivial computer based work for him. Setting up printers, installing software... That kind of stuff. After returning to Calgary and all the humbug of growing up with all those responsibilities, my wife and I had a really nasty fight. It was a long time coming and was so bad it scared the both of us. Shortly after that day my wife and I began talking about selling the house and moving somewhere else, time to start off fresh, as adults without the constant memories around us... Well even though my mom was on Oxygen, at this stage she was still quite able to manage on her own. Filling her tanks etc, she was taking care of my grandmother who by that time had broken her hip and was starting to show signs of dementia. We made the toughest choice possible. My wife and I asked my mom and my grandmother to move in together. We were not really quite sure how this would work. It seemed impossible in fact but it was fully necessary for some reason. So we found a house down the street that was for rent, a dump also but one that we could easily run down to help out if they needed help. For the next year this worked well.
4 years ago... With thing somewhat stable, my wife and I doing everything we could to try to improve the house a little. We made a decision to sell the house. Now this wasn't just a random decision, my wife had been planning it in her head for 5 years but didn't know when the right time was... That very day that she told me we need to sell the house... that was the right day! After speaking to a few Realtors, we found one that would sell the house in only 3 days, and for more than we were asking for it. The economy had spiked, Calgary was booming and it looked like there would be no end to it, but I knew... I knew that buying a house in that economy would not be reasonable and on top of that we needed a change...
Profits from the house in hand we made an offer to my grandmother, now showing signs of severe dementia, for 13 thousand dollars cash, in the bank for us to be able to use her motor home for the move. Broken down and not in good shape we figured this would give them the money they would need to live comfortably for the next couple of years since they had a steady income this would be supplemental. They could use the money to pay for people to do things for them like grocery shopping, order the newspaper delivery or just plain ol' order some chicken when they didn't feel like cooking... Unfortunately though, lurking in the background was one of my cousins, plotting for a way to get the motor home. She was manipulated and lied too and in her own words. "forgotten" Her memory was short from the dementia and as she began pulling memories from her past and was incorporating them in what she believed was the truth... He destroyed her, broke her heart. She cried many times when telling us that he promised to pay her a little bit here and there, but she got nothing from him. Not even a phone call. They will tell you now that it was all my fault, I somehow prevented this from happening... But my mom and grandmother were living in Calgary and I was living in Brampton by this time so how could I possibly prevent their communication? Its just a sad excuse by a couple of drug addicted losers who won't accept what they have done. And quite frankly him and his wife are so damn guilty about it that they had to find a way to torment me online through facebook. I have kept all the proof, and I will not hesitate to take it to legal means if they ever try to slander me again. Little does the unintelligent Oaf know, his words don't hurt me the way he thinks they do. He hides behind his wife saying that she is the one who is responsible and not him. Well if his wife's words were true and he does plan on preventing the burial of my grandmother when I finally arrive there he'll have some serious legal issues on his hands. I know about the undeclared income, I know about the abuse and drug addiction. And ultimately it wouldn't hurt me a bit if he ends up in jail because of it.
Just to step back a bit, my wife, my kids and I set out in our travel trailer and dodge durango on a journey. We had no idea where we would end up, but what I did know is that I would not be returning to Alberta. I had had enough, and while Alberta is my home town where I grew up and all I needed something new. I had visions of moving to PEI where at the time we could have bought a house outright and had no mortgage. But something just didn't seem right. Something deep in my core said this wasn't the right thing to do. So we stopped in Brampton, hooked up with the in laws and began some sort of company connection that I will not elaborate on. Suffice it to say that working with family can be a confusing thing. And when you have money in your bank, a 40 thousand dollar savings it's easy to get along with anyone. Once that money disappears it becomes harder and harder to look past your differences. Ultimately we bought a house in Brampton and currently live here but that's not where the story ends...
My mother and grandmother now, not doing well. Having trouble just living in the dirty ol' shack we set them up in. My mother was getting one infection after another and ending up in the hospital until one night I got a call from the hospital there at 2am. It was an ICU nurse asking me to come see her because she wasn't going to make it through the night..... WHAT? OMG I'm 4000km away and this nurse just told me that my mother is dying and that I need to come now... It was one of the most emotional nights of my life. So I contacted my brother and of course he went to be at her side but all the guilt I had for not being able to take my mother with me fell on my head that night.
My mother recovered from that night, she's a tough lady but the stress from ICU and the infection did more damage in one night to her heart and lungs than all the other illness combined. So shortly after that we found a way to convince her and my grandmother to move. With my grandmother hallucinating and dementia getting worse it no longer became a choice for her to move with us. She tried calling other family for help, including the one who took advantage of her but none of them could. Not that we would have let that happen, I would have involved the police had they convinced her to move in with them for fear that they would just rob her and not take care of her. So my mother agreed to move, and after many phone calls I had to make a tough choice. My grandmother wanted to keep all of her stuff so I would have to sell my travel trailer and use the money to pull a smaller trailer with her stuff. We would stay in motels etc on the way back...
Ultimately there is more to tell but I have to go now, I will return soon with the rest of the story about how things started falling into place medically the journey of transplantation was soon to start...
1 comment:
Your Blog showed up as a google alert, since I'm also a alpha-1 person. The little bit of the story sounds sad because there is so much more medical procedures doctor's can preform now. Besure to have your family tested confidentially which can be done by the use confidential service on www.alpha1advocacy.org or email the webmater of that group. They are all alphas helping alphas.
The Alpha-1 Advocacy Allience is different from the other groups, they actually trying to help alpha instead of groups that are just begging for funds. They, really have been helpful to my family!
The best wishes to you and your family.
jfs
PS you can also request brochures on alpha-1 from the A1AA.
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