Monday, 15 April 2013
I know finally an update! April 7-April 10, 2013
Over twelve years ago I would have given anything to just have one more year. I was waiting on the transplant list and my life had come to the point were Cystic Fibrosis was winning the battle I had fough my whole life. I was listed on the transplant list approx June 2000 and was pretty much living in the hospital I'd be out for a week and back in the hospital for a month. When I was home I had lost my independence I had meals on wheels coming to my house and home care helping clean I basically only had energy to lay on the couch all day. But when I was feeling well I thought hey maybe I'm gonna beat this and would-be able to go out and enjoy somewhat of a normal life until the next time I got a lung infection and was back in the hospital. Soon after being listed for transplant the doctor told us about the option of a Living Donor Transplant which we ended up doing because my time was running out and I only had 3 to 6 months survival without the transplant. Two very caring, courageous, and giving men, My dad and Richard gave me one of there lobes for me to live and gave me a second chance at life. A year after the Living Lobar Lung transplant I was living a pretty "normal" life I was taking more medication and it was a bit of work doing personalcrecord keeping but I was now breathing free and able to finally go out and enjoy life. Actually I couldn't wait to start life again start dreaming of realizing those dreams. I went to college, travelled, got married, started a company with my husband, got to meet my now 3 nieces and 3 nephews. Also I got to do lots of public speaking to tell my story. I have done so much I wanted a year, then when that came I just wanted 5 years and now I realize how time truly does fly and I am wanting more. I enjoy life and want to live. And now I am told that I may possibly get a third chance at life. It is hard for me to think that I am possibly going to be given a third chance at life. Especially when there are people who don't even barely get a first chance at life. My life even though I have always been given a timeline. "your only going to live to 9, you won't make it through your teens, forget about seeing your thirties. I'm now 34 and can't imagine how blessed I have been over my life even though most people consider me sick and say that poor girl I consider it a blessing bc withoutnthe struggles I have been throughout my life I would not be the "Strong, Insperational" person I am today and thank everyone for your kind thoughts and prayers. My view on life is that God has already set a plan out for my life and even though not everyone would agree that Cystic Fibrosis, Diabeties, Cervical Cancer, Hysterectomy, and not being able to have my own children (besides my furry ones) isn't fair I believe it is all in the plans and have never judged for the plan that was set out for me. I have 100% trust in God and have never been angry for the cards I have been dealt. There is always someone who is worse off. April 6-7, 2013 So to begin my updates from over the past week. On the weekend of April 6-7 I finally got to meet my new adorable nephew Hadley Ames who I've already prob already wrote this but I was honored when Tabitha named him after me by giving him the middle name Ames. Even though Tabitha reminds me of being a child and my mom using my middle name only when I was in trouble. Oh I can hear it now "Amy Louise" put that back or get down from there. So sorry Hadley Ames you may only be reminded of your amazing Auntie Amie when your momma is yelling at you. Lol Taba. Oh and for those of you that don't know I spelt my name Amy up top because that is how my mom had originally wanted to register my name at birth but bc of a mix up I ended up being Aime on my birth certificate and now bc I didn't think that made sense in grade four and I wanted a longer longer name I started spelling it Amie and still spell it that way to this day. It was exciting to visit with mom and Tabitha as well but the goal was to meet Hadley! The next day two out of my three favorite nieces and one of my two favorite sisters came for a visit. Brandi my sister and Chayce and Kamryn my nieces. They got to dress up in there yellow hospital gowns and gloves and visit with me in my room. After about 2 minutes the girls were bored and wanted to tour the "club med"I have been hangin at. So we went down for a tour. First a bite to eat at the delicious cafeteria "hmmm" then we start to make our way to the healing gardens in the Heart Institute part of the hospital. And the questions start. Auntie Amie what's wrong with that person, imagine if this was your real house, were do the kids hang out, can we hang out there It's my turn to push the wheel chair. They were so excited that I was having trouble keeping up with both of them talking and trying to figure out this hospital life I have been living the past three weeks. Oh and Kamryn had to make sure I was strong enough to hold Hadley when he was here because he was 9 pounds and I'm not very muscular. Lol love kids questions always make me smile. Monday, April 8,2013 Today I finally meet with my surgeon Dr Mullen who did my first transplant. I had been waiting for him to go over my scans and test results. This only being the third time I've seen him since after my surgery I was so glad to see the kind caring man who had a HUGE part I'm my transplant being a success. He was happy to see me again and even though could have been under different circumstances we were glad to be finally meeting up for a long over due chat. He told me that he would be willing to do a re transplant but there would be a few more complications then the first. First of all I have been on anti rejection drugs for twelve years now which I will always be on but can cause complications when there are new organs introduced as well as how they can affect different areas of the body, scar tissue from the previous could be an issue when trying to remove and re hook up then new and old lungs if there is anyone I can have confidence in Dr Mullen is defiantly known as being a well qualified surgeon and would be the only surgeon who would be willing to do a re transplant. He tells me that In an ideal world he would like to do a heart/lung transplant because it would be a better surgery for me to remove my lungs and brokencheart. But this isn't always the case and bc of the shortage of organs they may have to take the first type of organs that come in either heart/lungs, double lungs, or a single lobe. If only lungs or a single lobe are available he will repair my mitro valve while I am having my transplant. He tells me that there is going to be a bored meeting the next day with everyone who would-be involved to discuss my case. He reminds me that my biggest struggle will be getting organs. Tuesday, April 9, 2013 Today is the day that everyone involved in Transplant meets and discuss their cases and the one case will be mine. The transplant team consists of my pulmonologists, surgeon, nurses, physio, social worker, hospital clergy staff and who ever else is involved. The feed back that I received is everyone was in support of me having a second transplant and bc of the success of my first transplant and the way I have taken care of myself they all liked my positive outlook on life. Weds April 10, 2013 So as of today I was officially activated on the transplant list as a stage 2 which is the most critical need for organs list. For those of you who don't know how the Active Transplant List works this is what I have learned. When organs are available within Alberta they are checked against the people on the list waiting for organs from Alberta and if a match is found they give the organs to the person who is in most need or the sickest perso. If two people are good matches they consider who is the most critical and in need and who will have the best chance of survival or who the organs will most benefit. In most causes the persons size and blood type are the most important and they also do matching and some sort of tissue matching with both donor and recipients antibodies. I am going to still face the same harsh reality I faced with the first transplant. I am small, and my body has a lot more anti bodies against other peoples tissue then normal because of the years of anti rejection treatments and my built up of more anti bodies towards more people's tissues. And if organs are not needed in the province that they are in they are offered to another province or state that has someone who matches they will send organs out that way if the time applys to getting the organs to the recipient on time. I guess Edmonton receives a lot of organs from BC and California because of the closeness to Alberta. Also some people are not aware of the process whe. Someone becomes an organ donor. First of all the medical team looking after the potential donor and the transplant do not work together until a final decision is made and the donormis considered to be "brain dead" at this time the only thing keeping the donor alive is the life support system. If there is any brain activity at all the patient is not considered a donor. If the donor has organ failure bf there brain is considered not active then they do not qualify as a donor because you are still considered alive if there is any brain function at all even though there is virtually no chance of surviving and the person will pass away they must be 100% no brain activity. So the donation rate is not very high because of the person have to be legally brain dead and they have to let there family know there wishes. There are some provinces that have moved to a donor registration like Ontario and have a higher donation rate then some of the other provinces without registration. This information is as accurate as I know it to be if anything is not please let me know ASAP. Please if you have questions about organ donation please feel free to email me or just ask and I can give forget you the information you are looking for. Most Importantly if you are wanting to be an organ donor please either register if you are in a province that has registry and/or let your family know what your thoughts and wishes are for donation if your life ever came to that because your family if the one who ultimately has the final say unless you have some how expressed it thru registration or thru a document of some short. Don't take your organs to heaven with you. Heaven knows we need them here. I was so into talking about and trying to inform everyone about organ and tissue donation that I forgot to explain how I am being listed on the transplant list. I am being listed as needing one of three of the following options and I explained it above kind of I think. Anyways ideally they would like a heart/lung transplant were if the organs came as a set it would be safest for the surgeon to remove my scared lungs and leaky heart and put it all in as one package. That way the surgeon is not dealing with the scar tissue and having it affect all the different hook ups that need to be done, second is a double ling transplant where they would replace my current lobes with a full set of lungs and repair or replace my mitro valve in my heart. And thirdly just a single left lung transplant which would have two lobes so I would end up with two lobes on the left. And one on the right so one more lobe then I have been working with the past 12 years and again they would repair or replace my mitro valve. The surgeon said that they need to list me the three different ways because I will have a greater chance of receiving organs and because of the rare chance that organs of my size and tissue type don't come along very often they aren't going to take any chances.