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________________________________________________________ FAQ's ________________________________________________________ Please email me t-rexx@sympatico.ca with your questions.
Yes I do have restrictions, several of them. Food Restrictions: No Grapefruit of any kind. No undercooked food. Best to over cook food. No seafood. No Parmesan, Romano, Blue, Old cheese, No raw Veggie and fruit Physical Restrictions: Do not over exert. Nap as required. No lifting. Walk as you feel able. Stay away from crowds and children. Mental Restrictions: Realize my mind is weakened by transplant and meds. Will recover fully over time. Only do what feels comfortable, as far as reading, word puzzles and the like.
What are your expectations as to what this treatment will accomplish? I am hopeful and believe we have a cure. I further believe with the natural therapies I continue to employ, these are improving my results, speeding my recovery and aiding in a better lifestyle.
Why did you change your mind and go through with the Bone Marrow transplant (BMT)? If I recall correctly, you were against this procedure from the beginning? Yes, you are correct I was against the Bone Marrow transplant from the beginning. It was my sister (Brenda Gentles) that encouraged us to at least get tested for matches, so that in the event things progressed to the point where it was a must, we would be prepared. Sounded like good sense to us, so we did. The reason I was against this was twofold:
Is your disease Cancer and can you tell me some general information about Myelofibrosis? No Myelofibrosis is not Cancer. It is listed as a Terminal Bone Marrow Disease. By definition of Myelofibrosis it means the blood (Myelo) is becoming long and stringy (fibrosis). The body can not use blood that is in this shape and so the blood is discarded. I will describe what was happening in my case. People with Myelofibrosis very rarely experience the same symptoms during same timeframes which just makes it a tougher disease to deal with. You must learn to accept your situation quickly or you will cause yourself tremendous frustration and greater negative side effects. The body then becomes short of blood and the person becomes anemic. The body's reaction to this was to have my spleen start up and attempt to produce blood in place of the bone marrow. The problem with this extra load to the spleen creating the blood, it begins to grow in size. If it finds it can not provide enough blood, it continues to grow, but then also calls on the liver to begin to help out and so the liver begins to swell. The kidneys can then also be put under stress and you have the major organs all in distress. This results in all kinds of effects on the body and mind. It caused me to become extremely fatigued, I had severe and disabling pain in my legs, spleen, liver and general mid section of my body. My mind began to fail relative to remembering people's names, what I was doing, what I was talking about, remembering words, etc, etc. My focus and concentration was gone. I realized after a couple of close calls while driving that it had become too complicated. So obvious big changes were required. There is also an acute form and more chronic form. The acute form usually takes the patient's life in a very short period of time, perhaps a couple of months to a year. The chronic form takes the life of the patient in 1 - 10 years. During this time, the patient has a reducing lifestyle until they are placed in palliative care to prepare for death. This bone marrow transplant that I went through is only available to certain patients that meet the criteria. This is an experimental treatment and possible cure available at this time. I was told that Princess Margaret (PM) is the only hospital in Canada to attempt this on Myelofibrosis patients. The reason only PMH does this procedure is because of the cost vs. incident of cure. With a low rate of cure of 3 out of 10, other hospitals will not incur the cost. Princess Margaret has only treated a handful of people with this disease and all have died shortly after treatment (1-2 years). Myelofibrosis being as rare as it is and normally considered an older person’s (65-80 yr. old) disease, it is considered "extremely" rare for a 40 year as myself to get it. In fact there are only a handful of 40 yr. olds that have had Myelofibrosis in the entire world. No one knows why or how anyone contracts this disease, but they do know that in the vast majority of cases with any possible treatment, the outcome seems to be the same, death. It usually shows up in older people as a secondary or even third concern in their health issues. They know very little about the disease and the course it will take in any given patient. There is no on-going research on this disease. It remains the disease with no face!!
Have your eating habits returned to normal? Yes, for the most part my eating habits have returned to normal. There is occasion when I do feel like an extra meal for a few days and then it subsides. I also have nights where I will wake up feeling famished and will make a meal and then go back to sleep. There are few days that I actually feel like less.
When do you start looking at going back to work and do you have any idea what you are going to do? It will be a while before I look at returning to any kind of employment. The DR’s tell me I have another 12 – 15 months of recovery time and it could go longer. I am currently still not able to drive. The reason I cannot drive is that I am not able to process and coordinate all that you must when driving. I get information overload! I am still on Cyclosporin which is an anti rejection drug and it makes one shaky and forgetful at times. I also need to rest/sleep during the day. There are several other things as well, but I guess the point is, it will still be some time. I would like to start up a business, doing what, is still an open question. I have a few options and am exploring them as I can.
What is it like getting a blood transfusion? There are two distinctly different times. One when I am very low in blood and the second when I just make it into the transfusion reading. Please keep in mind this is how it happens with me. What I have seen is that it is different for everyone. When I am very low and am a little out of what is going on around me, Emmy must walk me to and from transfusion dept. chair/bed and guide me as to turn here, straight, etc….I am literally spun out of it. When I finally get to the transfusion department and I see the nurse coming with my blood, as strange as it may sound; I actually salivate at the sight of the blood and at times I believe I can taste it. I have questioned both the DR’s. and the nurses about this but they have never heard of this and find it hard to believe. But it happens to me. When I am low, but not critically low, it is pretty straight forward and non eventful as far as the blood goes. With both conditions, since I have had so many blood transfusion and now have an allergy reaction to the blood, they do what they call a pre-med to me. This is when they give me Benydral and a steroid (can’t recall the name) to alleviate the reaction. Doesn’t always work and if not then they give me an additional shot of benydral. If I react, I normally come up with hives all over my body. During this time I am pre-meded and getting the blood, I sleep. The benydral knocks me out for about an hour or two. It takes about 2 hrs. per bag. I normally would get two bags and that amount of blood would increase my hemoglobin by 10/bag +/- (total 20+/-). How long it lasts is completely dependant on how much blood my own body is creating and the age of the actual blood cells in the Red blood cells I received. These cells are called "pack cells".
What things can we as friends do to help you during this time of need? I have put together a short list what others have told me and some of my own idea’s. This is by no means a conclusive list, but I do think there are some good idea’s. Helping out a friend: - Show up at your friends door and give them a Hug
- Send them a card in the mail - do this regularly on an irregular schedule. Everyone likes to receive a nice card from a good friend. You can even make them cards or write a poem - Take a day off and drive them to their appointments for that day (or on required errands) - Drop off supper. Do this by 3:00pm so they do not start meal preparation - Show up at their home and bring your cleaning clothes. Clean their floors, sinks, dust, etc - Call them to say : Hi, I am your friend and I am always here for you, I love you (Always make the call brief, it takes a lot of energy to speak on the phone when one doesn’t feel well. Often the ill person just wants to hear you voice) - Drop over with their favorite lunch and enjoy lunch with them. Have a deck of cards with you to play a game or two with them. Remember it is not quantity, but rather quality time - Show up at their home with friends and sing them a couple Christmas carols. Who cares what month it is. They will love it and you will have fun doing it
Do something, but at all cost, don’t, I repeat don’t say "if you need anything or need my/our help, just call". It will not happen You are the healthy person and will have to be proactive. This was anonymous with ill people, the number one thing they didn’t want to hear and said they hear it all too often. The sick often feel that they have already asked so much of their friends, that they do not want to ask any more
Are there certain times of the day that are better for you than other’s? Everyday is a new day, as far as when I feel good through the day. There does not seem to be any consistency from day to day. There are days when the morning is better, than the next day it is after 8:00 PM that I feel good. So who knows, not I…….
What is the best way to contact you?
What would your "List" for happiness look like?
Much more to come………..
Jan 16/03 How do you maintain a positive attitude? This is very involved, but lets see what kind of a job I can do to get across to you what I do. First off I have a very strong Faith and work on that every day. I build it stronger and stronger and as it grows so does my attitude. You also need to have great support from the people you love that are around you. Emmy and Dave have been great cheerleaders and solid as a rock. Friends, how can I stress there importance. Their constant and unconditional support, fantastic! With my Faith, the afore mentioned support and knowing how to constructively turn attitude, determination, negative thoughts and any characteristic to your full advantage. You must also always be turning your daily struggles, speed bumps and potholes into winning situation. Set yourself up to win. It is really a philosophy, a concept if you will. Let me show you, so that you can do it for yourself. What I have found is very often is, if we want a better attitude many people will work on what they believe is there attitude, I do not. I work on what many believe is not connected; however, I see it as the key. Let me give you an example as an illustration that will demonstrate my concept. If a person wants to be happier, they will usually want to buy themselves a gift, a treat, go on a trip or buy a trinket and they believe this items/thing will bring them all the glowing happiness they could ever want. My experience has shown me it doesn’t work. I have also seen these people a short time after they have purchased the trinket and the euphoria of the purchase is already going or gone and so goes their happiness. They never had the happiness they seeked. They bought what marketers would call the dream. They are fleeting at best. Now they have to purchase more happiness; Oppps another trinket I mean, to get more happiness and the cycle goes on for years. The person never learns the truth and continues to seek happiness through trinkets unsuccessfully for a life and dies a very unhappy and unfulfilled person. What I would do is look for something I could do for another person…..Something I could do for them to make them laugh, smile or otherwise improve their day. By improving their day, I improve my day and more importantly it reflects on my happiness. The effect of this is so great that it may improve my happiness/outlook for at least the day and maybe for 2,3 or more days. SO, I believe it does not take a lot to improve your attitude, outlook or any part of your life, as long as your angle of attack is correct. The key to remember is never go after the item you want to improve, you will come up way short and be forever disappointed and probably caught in a downward spiral!! It is a little finicky at first to figure out the correct keys for you, but once you get onto it, it becomes easier and easier…never easy! The reward is truth in what you search for. One thing I left out till the end here, you can not do the second part to get the first part. In my example, I must genuinely want to improve the other person’s day and when you do, the happiness is granted…..Granted in large amounts no less!! Let me give you another excellent example: My brother-in-law has given his bone marrow 3 times to two different people (once to one and twice to another). He doesn’t know the people; in fact one of them is in England. He does it because he has been blessed with the ability to potentially save someone life and for him that’s a good enough reason. Come to think about it, isn’t that enough. To have the blessing to save a person’s life is incredible and he has been given the chance more then once and is acting on it. Now you must realize, he must take time off work, be knocked out with anesthesia as the Dr’s punch a couple of holes in his rear hip bone and drain him of the marrow he his donating. Then he is in the hospital overnight and if everything goes well, he is sent home the next day. He does have some recover time over the next few weeks, but he goes about his day as usual. Now there are several risks with this as you can see, yet he does it willingly. He asks nothing for it and if you talk to him he says it is not to bad and talks more about the recipient then himself. Well, I know it is a wonderful thing when someone gives so generously and most importantly unconditionally and that’s Al ! When I talk to him about his gift he has given, you can hear and see the beneficial results in his delightful and cheerful attitude towards others and life in general. He is a big Big man in my eyes! I would add he has been very supportive for Emmy, Dave Jr. and myself over the past years as well. Al has been blessed with much because of what he has done so unconditionally.
Why do you drink veggie juice instead of just eating veggies? Well I do eat raw veggies, but I juice far more of my veggies. The explanation is easy; when you juice veggies the digestion/assimilation process is speed up and more importantly, greatly enhanced. With all that nutrition in liquid form the body does not have to work so hard to break down the food into useable energy. The body can absorb all the value from the veggies quickly, easily and with little energy. It only takes about 30 mins. For the body to do this. The reason I do not like to eat cooked veggies is because when you cook at high heat for any length of time you actually are removing the nutritional value from the veggies. You have taken a "perfect" food and destroyed its value to you and your body. My choice is therefore to juice my veggies First, second eat them raw and third cook them slowly on low heat for a minimal amount of time in a soup, stew etc.
Why do you have to drink so much water? Isn’t it dangerous to have so much? This is mainly due to the Cyclosporin drug I am on that is to help my body accept my donor stem cells. This drug is very hard on the liver, kidneys and urinary tract. By drinking the 6 litres of water a day it helps to dilute the Cyclosporin as my body rids itself of it. The one thing that makes this tough to do is that I have to spread the consumption over 24 hours. Yes, that includes time when normally I would be sleeping. Normally I take about 275mls. of water every hour for a 24 hour period. This does mean that my sleep is interrupted every hour. I must say I have become very good a getting up every hour at night (since my body tells me I have to go anyway) and staying a sleep while I go to the washroom and drink my 275mls. of water. It sure took a while to get this figured out and now and then I just can’t do it and end up awake most of the night. Is it dangerous to drink so much water? It can be and should only be done under the supervision of your Doctor. When I started this and even today I monitor how much I take in vs. how I expel. I now know how much my body can handle and how I cycle it out. It is quite fascinating as I found that I do not expel at a consistent rate throughout the day. The amount varies at certain times. I found this interesting; perhaps, I have too much time on my hands or mind!
How do you spend your day? Keep in mind that every day is a new day and no day is the same as the last. I never know how my day is going to unfold until it actually does. The following are the must do’s: Go to the bathroom every hour, brush my teeth 4-6 times /day, rinse with scope 4-6 times /day, take pills at specific times 5 times per day, juice 5-6 times/day, baths 1-2 times/day (1 hr. each bath), nap 1-3 times/day (2-4hrs.) and take some other natural products several times/day on an empty stomach. I have a schedule that I follow, as well Emmy and Dave help me remember all these things because with my mind still not working 100%, I often get confused and forget what I am to take and when. So as you can see it doesn’t leave a lot of time. I do a lot of resting. I do not feel like doing much of anything, although I have been doing small fix it up job’s and organizing all the rooms in our home as I feel I can. That is now complete and our home looks great! I am now trying to help out with the cooking. I try and save the energy I have to play air hockey, racing cars, table top soccer or some board games with Dave. Emmy plays the board games with us, but is not to interested in the other games….any surprise? As well I look after keeping the home clean and tidy. I normally am a big reader, however, I do not have the attention span or focus at the moment. I can only do things that can be done on my schedule and my speed. I am pretty slow at what I do, but what is more important is that I do something, anything everyday. This is another way of helping with attitude, if I can do something to help Emmy or Dave with their day, then it has been a good day…No matter how I have felt throughout that day!
Are you bored with being confined to your home for such an extended period of time? No. You must remember I am not well. Many have said I look better now than I have in years. Hey hey, what exactly do they mean?!? As I said I am not well and do you remember the last time you had the flu and it knocked you into bed for a few days as you just didn’t feel like dealing with anything. Well that is the way I feel every day. That is how I start my day and that is how I finish the day. Now this is not to say I can not have some fun along the way or even do something constructive. I can and I do. In fact I believe it is imperative to a healthy recovery that I ensure everyday no matter how I feel that I do something to rebuke the enemy entering my camp and taking from me. That is in a word my job; rebuke rebuke rebuke. In order to keep the enemy in their place and let them know I do not surrender everyday I do something that I enjoy and that is constructive. This is how I have a good day everyday. I start out knowing that I have a different starting point then everybody else that is healthy and anything I do during the day improves my day. I take the control away from the enemy and improve my day with every little thing I can do. Help someone, do something for Emmy or Dave, put up a shelf, swiffer the floor, make my own meals, make Emmy laugh, play with Dave, I would say play with Emmy, but this is not a rated show here! answer e-mails or voice mails or do a small home repair. All these contribute to my day being an overwhelming success. Each day I must challenge a little more, realizing that there will be those days that are full of speed bumps and potholes; on a day like that it is even more important to do something to improve my day and rebuke the enemy.
What is the significance of 100days? I ask this of the Dr’s and they said that for me with Myelofibrosis it has less significance then other’s that had terminal diseases and went through bone marrow transplant. It basically means that patients can come off the "low microbial diet" that they have been on for the last 100 days. and reduce confinement to make small trips out of their homes for short duration’s under appropriate circumstances. No crowds, off peak times, etc. The low microbial diet is ensuring that your food is well cooked and staying away from certain foods. A few of the foods I am to stay away from are seafood, Parmesan cheese, grapefruit juice, almonds (brutal no chocolate covered almonds for me over Christmas). Soooo, here it comes…..as I am getting use to hearing, they would prefer if I remained on this diet and confined until a future date to be determined by my progress. They went on to explain that with Myelofibrosis being so unknown, not understood and very aggressive they would prefer not to take any chances….blah, blah ,blah, yadda, yadda…...I obviously comply happily! What has been your biggest positive surprise during your procedure? The strength and support I have received from Emmy and Dave. The strength and continued unconditional support I have received from so many
friends. I just never realize in my wildest wildest dreams we were backed by so much Love
from so many friends. I am thankful everyday for each one of you. The profound difference
you have made in my life has changed me forever. Folks, this is when you realize how
little a clean home means and how important friends are! I would say that if you are to
busy doing whatever to build strong friendships you are missing out on one of the great
blessing. By the way, keep in mind most people that talk about being busy aren’t that
busy – do you know why I say that, here’s proof positive; because they always
have an hour to tell you how busy they are and complain, complain. Why do they not take a
little control of their life, because they like to use this busy excuse for sympathy or
some other selfish reason. If you know people like this, do not walk away from them, RUN,
they are a drain to you and you don’t deserve that kind of relationship. Some even go
on that they are to busy for vacation. Wrong, The Queen, The Prime Minister, The
President, perhaps you are truly busy, but all have time to take vacation. SO come on get
with the program…Run from these people. Wow, enough already Davey boy! That was
Fun…. |
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