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________________________________________________________ Dave's daily progress is reported below for the January - March 2003 period.
General overview of
appointment: Went well I have been reduced to one scheduled appointment/week. If other appointments are needed, I simply show up at PMH. This is great; I only have to go to PM Hospital one time. This is a huge relief. Some weeks we were there 4 times and that is just too much, although at the time I certainly needed the help as it was for transfusions of one kind or another. Without them I would have died! Weight: 151 lbs./69 kgs. Energy Level: continued lethargic (during day for short periods) drop in Prednisone Naps: still take/need 2-3.5 hr nap in afternoon Prednisone: reduced another 10mgs. Blood pressure: Normalize Hemoglobin: 92 as last week (transfusion at 85) - it has been 21 days since last!! Platelets: 34 same as last week White Cells: Normal Neutraphils: Normal Magnesium: Low normal (juicing is increasing this) Calcium: Low normal (juicing is increasing this) Potassium: Normal (juicing has increased this) Liver Enzymes: Mostly normal (one spec is a little high, but dropping this is fine) Kidney Creatine: Normal (indicates kidneys are flushing; drinking enough water) Spleen: Shrunk another 1 centimeter!! Dr. suprised at rate of shrinking Juicing: Now juicing 5 times per day (it's benefits are starting to be seen) Water Intake: 6-7 litres/day Homemade food: making Homemade bread; Homemade soups (Reduced Chemicals) Shaking I had is gone and the Dr. indicated it was probably just the meds. Don't worry. My Personal Overall rating: I feel I am doing well with continued positive progress. My lethargic energy level is OK. It is expected that as the Prednisone is reduced until I get off it, I will continue to feel lethargic until my body can re-adjust from being off it. Remember this is a steroid. So the low energy will correct itself. This will go a long way to helping me feel better overall as well. I look forward to beginning of March being back to "normal" energy. We are very pleased and happy! Cheers!
Tuesday check-up: General overview of appointment: Went well We verified what meds. I was taking and how I had been feeling; which has been pretty good. I am moving slower and tired then usual, however, as I have explained before this Is a result of the prednisone reduction. Seems like my sweats have gone as mysteriously as they came. They did blood cultures for a couple of weeks and nothing. I did get a couple dizzy spells but believe they were from lack of sleep. I had a couple night’s I couldn’t sleep. Periodically this happens, it will go in a day or two. I take a gravel for a night or two and it helps me get back on track. My next bone marrow biopsy will be in 20 days…..Ouch! Weight: 154lbs. /70.1kgs. Energy level: continued lethargic (during day for short periods) drop in Prednisone Naps : still take/need 2-3.5 hr nap in afternoon Prednisone: reduced another 10mgs. Blood pressure: Normal Hemoglobin: 88 (transfusion at 85) – it has been 28 days since last!! Platelets: 33 one less than last week White cells: *** Out of spec. Neutraphils: Normal Magnesium: Low normal (juicing is increasing this) Calcium: normal (juicing is increasing this) Potassium: Normal(juicing has increased this) Liver Enzymes: Mostly normal (one spec is a little high, but dropping, this is fine) Kidney Creatine: Normal (indicates kidneys are flushing; drinking enough water) Spleen: Didn’t check Juicing: Now juicing 5 times per day ( It’s benefits are starting to be seen) Water Intake: 5-6 litres/day Homemade food: making Homemade bread; Homemade soups (Reduced Chemicals) My Personal Overall rating: I feel I am doing well with continued positive progress. All results improved with the exception of Hemoglobin and White cells. We are very pleased and happy!
Tuesday check-up: General overview of appointment: Went very well We verified meds. regime. How I had been feeling; I had 3-4 days of dealing with severe dizziness, well, more like loss of equilibrium. Emmy finally suggested we try some swimmers ear, ear drops and puff, my balance and feel good state was back. I thought I got it from the baths I have, when I dunk my head for an hour or so, the Dr. said he doesn’t think so. Now that it is gone, we are all happier. The rest of my week went uneventful and I felt generally good. The prednisone reduction that I have had over the last few weeks doesn’t seem to be bothering me as much this time. When I told the Dr. this he said it is possible that I may not be effected as much this go. That’s great news! My next bone marrow biopsy will be in 14 days…..Yikes! Release date from house arrest – Feb. 10th, 2003 – I’m going to Home Depot, Canadian Tire and Home Hardware for candles! NOT! Drop the candle thing. Hemoglobin: 89 (last week 88, went up – cheers!) – it has been 5 weeks since last transfusion! I have not been this long without a transfusion in over 1.25 years. Platelets: 26 dropped 7 from last week White cells: *Out of spec. but did raise slightly. So it is coming back! Neutraphils: Normal - raised a little from last week Diet : Low Microbial Diet (Over cooked food with restrictions) Ha! Weight: 154lbs. /70.2kgs. Energy level: not as lethargic, still periods throughout day, due to drop in Prednisone Naps : still take/need 2-3.5 hr nap in afternoon GVHD : this returned as a light rash - last week this had stopped Prednisone: no change this week – next week, Oh yeah! Blood pressure: Normal - 130/70 Magnesium: Normal (juicing increased this) Calcium: Normal (juicing increased this) Potassium: Normal(juicing increased this) Liver Enzymes:Almost normal across the board (one spec out by 1 – don’t sweat it!) Kidney Creatinine: Normal (kidneys are flushing; drinking enough water and juice) Spleen: shrunk again another cm! It has completely softened as well – good Juicing: Now juicing 5 times per day ( It’s benefits are starting to be seen) Water Intake: 5-6 litres/day Homemade food: making Homemade bread; Homemade soups, Stew, Chili (this is great when it is cold outside), Chinese!! (Reduced Chemicals, low heat cooking) GVHD = Graft vs. Host disease. This is when my immune system (Host) fights with the introduced stem cells (Graft). My Personal Overall rating: I feel I am doing well with continued positive progress. All results improved with the exception of Platelets that dropped minimally. All chemistry is now back in spec. This means major organs are again functioning as we would expect. Now they can do their repairs, healings and strengthen of themselves and support their appropriate total system in the body. We are very pleased and happy and believe the miracle has happened and we are into recover mode! Unfortunately recover takes about a year, year and a half. I am a patient, patient…….not likely!
Tuesday check-up: General overview of appointment: Went better then last week, which was good. We verified meds. regime. Dizziness is gone. I have been feeling times of fatigue. I rest when these come and then get up and do something small around our home when I awake. The rest of my week went uneventful and I felt generally well. The prednisone reduction that I have had over the last few weeks is starting to affect me. Keep in mind the 2 main reasons I want off the prednisone: 1) It provides one with false energy 2) It causes one to become irritable and quicken ones temper. This is why it has been so critical that I do my due diligence on these meds before taking them. This helps me prepare for what is to come. I have seen too many times people go on meds not truly understanding the side effects and turn into people you know they prefer they didn’t. They could have done something about it, but they chose just to let the meds negatively effect them and then blame the meds. No, No way, I refuse to give into meds that way. Nobody has to. It goes back to my basic philosophy, as I was explaining in the FAQ’s section on building ones attitude. I, as we all do, have a choice, I can let the meds take over (which is the same as letting evil into my camp – not for me!) or you can take responsibility for your action and prepare for the meds. I do this by getting informed; through not only the Dr’s but also, people that were on this med. (realizing everybody can have different effects), books, manufacturing supplied info, internet, etc…. Then I prepare myself, my family, as well as friends as to what they might see in a change with me. I ask for their help in this endeavor as I am going to do all I can to control and work around these effects from the meds. In the case of prednisone, excess tiredness and irritability and quickened temper (this means practice saying sorry!). When I do this it also helps boost my attitude, which in turn makes me feel happier. I can tell you, I am happier than over 99% of the people in this world…Really. How do I do that? Since I have taken some control back from the enemy and I do not allow him free rein in my camp (he goes by my rules – out with him! Stomp him into the ground!) it reflects in my attitude and general happiness. I have seen so many times people just let themselves be overridden by these meds and then blame the meds. That only makes the person feel worse that is taking the meds. (The enemy will then send in old man guilt!) Many don’t even apologize for there poor behaviors; they again say " Well, I can’t help it, it is the meds"! Don’t believe it and don’t accept it. It is all part of the enemies game to bring you down. I explained this further and gave examples of this in the FAQ’s. You must always be boosting your attitude and happiness, make no mistake about it, it is work. If you think that I have had a BMT to overcome wait until you read what events and people I have had to overcome. Please read the next FAQ’s – I think you will find some of the attitude and behaviors of my donor and blood family extremely surprising. People often say to me, it seems you are getting off so easy. You seem to have such few side effects or problems. This is not totally true. I have many of the same side effects, it has been and continues to be at times a struggle. I refuse to give into these things, as so many do. Again, this is not the fight, it is many times better to fight with enemy C and that will take care of enemy A, B and C! SO I do not try to attack the meds. I look for ways to work around them, so that I can feel good I have done something and not concerned myself with the meds and their effects on me. The enemy is kicked out of my camp and I am left with a stronger more positive attitude (now better prepared to do battle with the enemy the next time and don’t think it’s over – Oh! No! there’s more, but I am now even better prepared) and am a much happier person……I apologize that I digress, but felt it was an important point! Revised release date from house arrest – April 30, 2003 – The Head Dr of the BMT area had a good long talk with me today. Many positive items were discussed. In particular was the effort that I , Emmy and Dave have put into following the special requirements and restrictions of lodging, activities, eating, going out, etc, etc,etc…..he wanted to go over these with me and see if I would be willing to continue with them, even though many in my condition or similar condition stop them long before this 118 day mark. I explained to him my attitude, philosophy and that I and my camp are willing to continue to do our part to enhance my chances of survival. He was very pleased with our attitude and fortitude. He then proposed; if we are willing to continue with restrictions and all the other things we discussed that he would like to move me to check-ups every 2 weeks!!! This is GREAT news!! He emphasized that if I have any problems, that I come straight into the clinic or to see him – No delay, immediately. He explained that with the care I am getting at home (which Emmy and Dave are a big part of) he believes this would be best for my overall state of mind. He is aware Emmy is a former nurse and this weighs into the big picture. He also explained the longer term plan to me. He wants me off most meds. if not all by sometime mid spring. He explain in great detail how coming off the Prednisone (steroid) over the next couple of weeks is going to cause great fatigue. He mentioned that the energy it has been giving me has replaced my bodies natural energy giving ability. What happens when I come off the Prednisone is I will become very tired to the point I may not get out of bed several days. This extremely low energy will last for 2-4 months, in which time my body will begin to once again create its own natural energy I need. This process of the body rebuilding its energy capabilities may take 3-5 months. So we are looking at 5 – 9 months of new times. He expects this process to start anytime in the next 1 – 3 weeks and wanted me to fully understand what is going on and be properly prepared…..I am. I have explained this to Emmy and Dave and will explain it to all involved, so we can all be prepared and plan for it. I do not believe it will be as debilitating as the Head Dr. expects. No way, not with the team we have…. No Way! There was much said at this meeting and I could go on much longer, but that gives you and overview of what we can expect over the next several months. Hemoglobin: 92 (last week 89, went up – cheers!) – 6 weeks since last transfusion! I have not been this long without a transfusion in over 1.5 years. Platelets: 34 (26 dropped 7 from previous week – cheers!) White cells: *3.9 (Out of spec. by .1 – it is coming back!) Neutraphils: Normal - raised again from last week – cheers!) Diet : Low Microbial Diet (Over cooked food with restrictions) Ha! Weight: 154lbs. /71.1kgs. Energy level: lethargic periods throughout day, will get worse over next 2 - 3 wks. Naps : still take/need 2 - 3.5 hr nap in afternoon GVHD : very slight rash – less then last week Prednisone: reduce by 10 and has given go ahead to reduce by another 10 next week!! Blood pressure: Normal - 140/70 Magnesium: Normal (juicing increased this) Calcium: Normal (juicing increased this) Potassium: Normal(juicing increased this) Liver Enzymes: Normal across the board (one spec out insignificant amount - cheers!! ) Kidney Creatinine: Normal (kidneys are flushing; drinking enough water and juice) Spleen: shrunk again another cm! It has completely softened as well Juicing: Now juicing 4 times per day ( I started turning orange – reduced juicing) Water Intake: 5-6 litres/day Homemade food: making Homemade bread; Homemade soups, Stew, Chili (this is great when it is cold outside), Wok cooking Hair growth: I have a full head of hair and it is getting thicker! Call me "Harry"! My Personal Overall rating: We are all very pleased with these latest results and the development of going for check-ups every 2 weeks. All results are now in the normal range with the exception of Hemoglobin and Platelets, which we would expect to be out of spec at this time. This means major organs are again functioning properly. Now they can do their repairs, healings and strengthen of themselves and support their appropriate total system in the body. We are very pleased and happy and believe the miracle has happened and we are into recover mode! Unfortunately recover takes about a year, year and a half. I have become a patient, patient!
Overview: Check-up went well. Dr. was pleased with my progress on my GVHD on my hands although they were still in pretty rough shape. They are much better today. Wow, not much to talk about this check-up and this can only be good news. In the last week I have had some tough time with having to visit the washroom every 20mins. for 8 hours……can you say Ouch! That is only after the first 2 hours after that things became a little more,, colourful! After that day, then it started for an hour the next day. I am to immediately phone PMH when this happens because it is likely GVHD, however I felt because of how it came on it was something else, so I didn’t phone. I didn’t want them jumping to conclusions and putting me back on more prednisone. As I thought about it I remembered having homemade garlic bread and pasta sauce both with garlic. Well sometimes garlic just doesn’t sit right….come on, you know what I mean! Since the trips to the bathroom did subside day two, I believe my assumption was correct; The "Garlic Effect". I have also been fighting with a great degree of lack of energy. Although, when our dishwasher broke for good this past week, we bought a new one. I took out the old one and installed the new one. It only took me 1 hour to install the new one. I like it! The other day I had trouble getting going in the morning, I finally pushed myself to a min. have a bath and shave and put on clothes for the day. Felt so good after that I went out and shoveled part of the driveway. Came back in had lunch and a nap. 4 hours later I finished the driveway. Felt very good about it. Hemoglobin: 94 (last check-up 92, – Norm 140 - 180) – 8 weeks since last transfusion! I have not been this long without a transfusion in almost 2 years. Platelets: 46 (34 - Dr. very impressed – Norm 150 - 300) White cells: 4.0 (3.9 – slow but sure – Norm 4.0 – 11.0) Neutraphils: 3.0 (3.4 - Norm 2.5 – 7.5 ) Diet : Low Microbial Diet (Over cooked food with restrictions – Yummy!) Weight: 160lbs. / 72.8kgs. ( a Chunky / Beefy 160!) Energy level: lethargic periods throughout day, will get worse over next 1 – 2months. Naps : still take/need 2 - 3.5 hr nap in afternoon GVHD : Hands getting better Cyclosporin : 200 mgs./ 2 daily (reduced by 25mgs. / dose) Prednisone: reduce by 5mgs. I only take 5 mgs. now!! Could be off it Feb. 25! Blood pressure: Normal – N/A Magnesium: Normal Calcium: Normal Potassium: Normal Liver Enzymes: Looks good ALP/ 37 ; AST 22 ; ALT 43 Kidney Creatinine: 127 ( a little high - Norm <107 Spleen: shrunk again – 3 cm. It has shrunk in total ~ 19.5cm / 8 inches!! Juicing: Now juicing 3 - 4 times per day Water Intake: 6 + litres/day Homemade food: bread; soups, Stew, Chili (this is great when it is cold outside), Wok Hair growth: I am getting a trim next week! "make me look pretty"! LOL My Personal Overall rating: Very Good! With me very low on prednisone they have started to reduce my Cyclosporin ( anti-rejection drug). This is great, so my water intake will be decreased as well as blood pressure med. (Cyclosporin increases your blood pressure). This is the home stretch. They say just another 12-14 months. Ok, it is not exactly around the corner, but hey, I can see the finish line!
This is the week we are not required to go to PMH, as we are now on two week intervals! As per the DR’s last week, if all is well, reduce the prednisone another 10mgs. I did. I am now down to only a 10mgs. Dose. I suspect they will now reduce my prednisone at a rate of 2.5mgs. / week. This means I could be off it totally by the beginning of March. It has now been 8 weeks since my last blood transfusion. I have no new blood results, but I do not feel any different then last week. My blood must be holding. We will see this coming Tuesday. Well, as I said above, I didn’t have to go to PMH unless we had some concerns. We did. I hit several speed bumps this week. It actually started late last week. My sinus’s started to bother me and this lasted a few days, then it moved behind my left eye and added a severe headache (I rarely get headaches, ever). After a few days of this my eye was so painful it started to water constantly, it was, in a word, brutal! We were going to head down to PMH early in the week to see what they could do about this. We realized this was just the enemy trying to throw us off the road to recover. When we acknowledged this, the enemy was done for. We rebuked him and sent him away. He left within one hour of doing this. However, he didn’t leave for long – we did expect him to return and we were ready for him. He returned by giving me GVHD (Graft vs. Host Disease) on my hands. This showed itself with red dots all over the palms of my hands, as well as swollen bumps over my hands and fingers. All this was primarily on the palm side of my hands. These bumps were swelling and preventing my hands and fingers from bending. Well enough of this, Thursday we headed down to PMH to see the DR. Since he did not want to increase my oral prednisone ( they really are trying to get me off it) they elected to prescribe me a prednisone cream, that I am to put on twice daily. After applying, I am to wear plastic gloves for several hours so the cream is not wiped off and I don’t get any internally. After a day of this cream and my fingers and hands still were not working well, it was time to kick butt on the enemy. Remember I have said many of time, when the enemy attacks, we must push back by doing something, anything that shows we will not surrender. Well it was time. So what did I do, I thought of one of the hardest things I could possibly do, that’ right the hardest thing I could think off, I pulled out my guitar, dusted it off and started to play it. Not only has it been a long time, but as everyone knows that plays guitar or most stringed instruments for that matter; you need limber fingers to play. Well it was a struggle, but play I did – not great at first, but the point is I played. Show the enemy you are on the offensive and his time is over. Slowly I have improved and Dave Jr. whom plays the piano and I are now practicing a couple of the same songs so we can play a duet!! Dave is doing much better than I. The enemy is retreating and once again we are on the road to recover. We kicked the enemy silly. Stomped him!! We will report again after our next scheduled appointment Tuesday, Feb., 11th, 03. This was from appointment 2 weeks ago. No new blood work to report. Feb. 11th next blood work. Hemoglobin: 92 (last week 89, went up – cheers!) – 6 weeks since last transfusion! I have not been this long without a transfusion in over 1.5 years. Platelets: 34 (26 dropped 7 from previous week – cheers!) White cells: *3.9 (Out of spec. by .1 – it is coming back!) Neutraphils: Normal - raised again from last week – cheers!) Diet : Low Microbial Diet (Over cooked food with restrictions) Ha! Weight: 154lbs. /71.1kgs. Energy level: lethargic periods throughout day, will get worse over next 2 - 3 wks. Naps : still take/need 2 - 3.5 hr nap in afternoon GVHD : very slight rash – less then last week Prednisone: reduce by 10 and has given go ahead to reduce by another 10 next week!! Blood pressure: Normal - 140/70 Magnesium: Normal (juicing increased this) Calcium: Normal (juicing increased this) Potassium: Normal(juicing increased this) Liver Enzymes: Normal across the board (one spec out insignificant amount - cheers!! ) Kidney Creatinine: Normal (kidneys are flushing; drinking enough water and juice) Spleen: shrunk again another cm! It has completely softened as well Juicing: Now juicing 4 times per day ( I started turning orange – reduced juicing) Water Intake: 5-6 litres/day Homemade food: making Homemade bread; Homemade soups, Stew, Chili (this is great when it is cold outside), Wok cooking Hair growth: I have a full head of hair and it is getting thicker! Call me "Harry"! My Personal Overall rating: We are all very pleased with these latest results and the development of going for check-ups every 2 weeks. All results are now in the normal range with the exception of Hemoglobin and Platelets, which we would expect to be out of spec at this time. This means major organs are again functioning properly. Now they can do their repairs, healings and strengthen of themselves and support their appropriate total system in the body. . We are very pleased and happy and believe the miracle has happened and we are into recover mode! Unfortunately recover takes about a year, year and a half. I have become a patient, patient!
Overview: Check-up went well. My spleen has now shrunk so much that it is now back behind my rib cage!! That means about a 12 inch reduction, still more to go but this is Great! Nothing else very eventful at DR’s visit. It all started the next day. I had serious bout’s of Prednisone withdrawal off and on the last couple of weeks. Last week from Wednesday to Sunday I spent most of my time either sleeping in bed or sitting in bed staring into space. I had trouble getting up and down the stairs and had to rest a couple of times. It is more than just fatigue it is also a I don’t care attitude. It was terrible, it was like being back in the hospital all over again. I did however continue to do at least one thing for myself or someone else. This was the victory! Hemoglobin: 96 (last check-up 94, – Norm 140 - 180) – 10 weeks since last transfusion! Increase of 1/week. At this rate it will be another 12 months before normal Platelets: 53 (46 - Dr. very impressed – Norm 150 - 300) White cells: 2.8 (4.0 – Norm 4.0 – 11.0) Neutraphils: 2.2 (3.0 - Norm 2.5 – 7.5 ) Diet : Low Microbial Diet (Over cooked food with restrictions – Yummy!) Weight: 162lbs. / 73.7kgs. ( Enough at 162 lbs!) Energy level: Terrible periods of low energy, fatigue. Naps : more rests than every – morning, noon and afternoon then to bed at 8:00 GVHD : Hands getting better Cyclosporin : 200 mgs./ 2 daily Prednisone: reduce by 2,5mgs. Tues. March 4th reduce to ZERO!!! Blood pressure: Very High 170/90 Magnesium: Normal Calcium: Normal Potassium: Normal Liver Enzymes: Looks good ALP/ 60 ; AST 22 ; ALT 32 Kidney Creatinine: 104 ( Norm <107) Spleen: shrunk again – 4 cm. Now behind rib cage – Very exciting!!! Juicing: Now juicing 3 times per day Water Intake: 6 + litres/day Homemade food: bread; soups, Stew, Chili (this is great when it is cold outside), Wok Hair growth: I am getting a trim next week! "make me look pretty"! LOL My Personal Overall rating: 1/3rd of the way there – 6 months. I was told that this process would take approx. 18 months. Looking forward to getting through this prednisone withdrawal. I feel sadden for Emmy as I was doing things around our home to help out, it is now once again all up to her. I am useless at this time. She carries a big load day in and day out. She is a "rock"!
Tuesday check-up: Overview: Mostly best results ever and I never felt worse since getting out of hospital!! Well, our very tough times continued. My visit on Tuesday was not scheduled but since I was feeling so poorly we felt it necessary. I had come down with foot and body GVHD and phoned the DR to tell him Monday the 3rd. He said to come in the next day. It turns out that all my blood results improved except my Hemoglobin dropped from 96 to 88. This is why I started noticing my shortness of breath. I had also come down with the flu the DR confirmed as well was dealing with severe prednisone withdrawals. The effect to me was that I could barely walk up stairs, in fact had to rest twice before making it to the top landing; I awoke eat breakfast, went back to sleep, woke for lunch, went back to sleep, woke had supper, stayed up for 2 hours and then went to sleep for the night. This was my protocol for 5 days. I also had terrible pain in my knees (which was flu and prednisone induced – duo effect – thanks!) so bad that even my walking had become very very slow and Emmy and Dave looked after me so I didn’t have to walk as much. It was just to painful. I was dizzy and felt like vomiting continually among other symptoms. The DR. gave me a 4 day supply of some powerful antibiotics did some extra blood tests on me and I am know March the 8th finally starting to feel partial back to normal. Which is not the best either. It will be good when I am feeling completely well! I long for the days…… Ps Thanks Emmy and Dave and Friends, you have once again help me through yet another struggle. One piece of exciting news, I have been asked to do a motivational speaking engagement towards the end of this month, however I have had to decline, as I am not strong enough as yet. It will no doubt be another several months (or longer) before I will be prepared. I have also been ask to speak to some individuals about my journey and how I have handled it. I am going to try this one with one person and see how it goes. I am still very weak and tired and must ensure I do not run myself down. Non the less; it was very exciting and when I am well I look forward to doing many such presentation on motivation and speaking about my journey. Many of the details and truly exciting pieces of this journey often get left out in this print media, due to space and time, however, live, many have told me it is a story that needs to be told. I hope I get the opportunity. Hemoglobin: 88 (last check-up 96, – Norm 140 - 180) – 10+ weeks since last transfusion! Platelets: 58 (53 - Norm 150 - 300) White cells: 3.1 (2.8 – Norm 4.0 – 11.0) Neutraphils: 2.5 (2.2 - Norm 2.5 – 7.5 ) Diet : Low Microbial Diet (Over cooked food with restrictions – Yummy!) Weight: 164lbs. / 74.3kgs. ( Enough at 162 lbs!) - ( This is ridicules at 164!!) Energy level: Brutal periods of low energy, fatigue and pain. Naps : continually sleep – morning, noon and afternoon then to bed at 7:00 GVHD : Slowly hands getting better Cyclosporin : 200 mgs./ 2 daily Prednisone: 25 mgs. The day I was to go to 0 – Darn!! Blood pressure: Normal Magnesium: Normal Calcium: Normal Potassium: Normal Liver Enzymes: Looks good ALP/ 78 ; AST 20 ; ALT 39 Kidney Creatinine: 106 ( 104 - Norm <107) Spleen: Behind rib cage Juicing: Stopped for 4 days - no energy to do Water Intake: 6 + litres/day Homemade food: bread; soups, Stew, Chili (this is great when it is cold outside), Wok Hair growth: Very curly - I am getting a trim this week! My Personal Overall rating: Brutal 2 weeks. It can and will only get better. Good night all………..
Tuesday check-up: Overview: So it has been very cold, but, it was bright and sunny this February! Does this description mean a good or hard February? So my Hemoglobin, Platelets and White cells, jump significantly, but, my Liver is acting like an out of control child whom eat too much candy during the admission at the piano recital. Does this description mean a good or pothole result?? I’ll let you be the judge. GVHD is the most significant it has ever been. My entire body is being attack, as well as a direct attack on my Liver. I feel very lousy and down in the dumps as I am sleeping a lot. If we get the expected nice weather this weekend, I know it will help. My prednisone has once again been raised and I missed getting off it by 1 day. Aaaahh! On the lighter side, I guess we are all looking forward too the warmer weather that is expected. I am as well although with the hair growth that some of these meds induce, I am concerned if I take my shirt off in public I may be captured or worse shot as I am misidentified as a Bigfoot! I think a body shave may be in order…..Hey if I gotta’ live it, someone is going to hear about it……sorry! Ha! Ha! Humor is a great thing, I hope I find mine soon……. Hemoglobin: 99 (last check-up 88, – Norm 140 - 180) – Last transfusion Dec 17th! Platelets: 70 (58 - Norm 150 - 300) White cells: 6.4 (3.1 – Norm 4.0 – 11.0) Neutraphils: 5.6 (5.6 - Norm 2.5 – 7.5 ) Diet : Low Microbial Diet (Overcooked food with restrictions – No more, please!) Weight: 163lbs. / 74.1kgs. ( The upward trend is slowing – close call chubby) Energy level: Lots of sleep – some may call it hibernation…… Naps : continually sleep – morning, noon and afternoon then to bed at 7:00 GVHD : Body and liver attack currently Feet and hands getting better Cyclosporin : 200 mgs./ 2 daily Prednisone: 50mgs. (25 mgs. Last week!!) Blood pressure: Normal Magnesium: Low Normal @ 0.71 Calcium: Normal @ 2.26 Potassium: Low Normal @ 3.5 Liver Enzymes: Abnormal High All ALP/111 ; AST/38 ; ALT/120 ( 78 / 20 / 39) Kidney Creatinine: Normal 92 ( 106 - Norm <107) Spleen: Behind rib cage Juicing: Start juicing again tomorrow Water Intake: 6 + litres/day - Even this is know tough with Zero energy I have Homemade food: bread; soups, Stew, Chili (this is great when it is cold outside), Wok Hair growth: Very curly - I am getting a trim this week! Hair has grown in, in a different style with curls so I look very different. I will get a picture up in next few days. My face has become very round from the prednisone and no question the excess weight at 163lbs!! My Personal Overall rating: Another tough week, but hey spring is around the corner and that will helpl us all!!. Not to mention my birthday the end of this month. I was not to make age 41 and here I am hitting 43….please keep it to yourself, it is our secret! Each moment…………..Live it!
Wednesday check-up: Fantastic Results! Overall my entire blood screen is normal except for 3 results. The DR’s were very impressed. They indicated that my Hemoglobin had risen the maximum that any person healthy or otherwise can increase in an 8 day period. They actually questioned me as to whether I had received a blood transfusion from another institution; due to such a dramatic increase in my Hemoglobin. GVHD is still present, however, has reduced in severity significantly. They have reduced my prednisone from 50 to 40 mgs. /day. Next week anticipate another reduction of 10mgs….6 weeks and I am off it. Sometimes what we think is not negative is positive. See below for further explanation……… It appears the old adage of no pain no gain, is at least partly correct. It has been a month full of speed bumps and potholes for us. The enemy would like us to believe that these pains, speed bumps and potholes are always a bad thing, in fact it has been proved once again the it is just another one of his dirty tricks. What is made to appear to us as negative, is in fact positive. During this time of struggle my body was being healed, not harmed. How often do we think of pain, etc as all bad. Let me give you a quick illustration to further explain what I mean. For all you women and men that have been involved in child birth, did you not experience some kind of stress, discomfort, even pain? The act of child birth is indeed a stressful if not painful time, but that doesn’t equal a bad thing. It is perhaps the greatest gift of all and yet it is difficult/painful. Interesting…….. Changes to daily routine: The DR's have lifted my visitation ban - Come one come all. Effective March 24th, 2003 Caveats - possible cold, please don’t visit, call before coming limited exposure to children 10 and under no large groups take it slow and steady The DR's have also lifted my 150+ day house arrest - I am FREE!! Effective March 24, 2003….take it slow and steady The DR's have also lifted my food restrictions - oh great, I have been gaining to much weight while restricted; now, here comes the serious pounds! Bone Marrow Biopsy Date : On or before April 10th, 2003 GVHD : Greatly reduced - again under control Hemoglobin: 118 (last check-up 99, – Norm 140 - 180) – Last transfusion Dec 17th! Platelets: 79 (70 - Norm 180 - 300) White cells: 5.5 (6.4 – Norm 4.0 – 11.0) Neutraphils: 4.8(5.6 - Norm 2.5 – 7.5 ) Spleen: Continues to shrink Liver: Back in line Liver Enzymes: Normal ALP/59 ; AST/20 ; ALT/69 – little high ( 111 / 38 / 120) Total Bilirubin: 19 (21 – norm <22) Kidney Creatinine: Normal 111 ( 92 - Norm <107) Weight: 163lbs. / 74.0kgs. Easy does it Dave! Energy level: Lots of rest/sleep – some may call it hibernation…… Rest schedule: 7:30 PM – 7:30 AM // 1:00 PM - 4:00 PM ~ 14 – 16 hours/day Visitation ban: Restriction lifted Diet : Restrictions lifted!! House arrest: Restriction lifted Blood pressure: Normal 140 / 85 Cyclosporin : 200 mgs./ 2 daily Prednisone: 40 (50mgs. last week) Magnesium: Normal @ 0.87 (0.71) Calcium: Normal @ 2.43 (2.26) Potassium: Normal @ 3.7 (3.5) Juicing: 3 times / day mostly carrots, spinach and beets Water Intake: 7 + litres/day - Thirstier lately Hair growth: New Pictures of me with my curly hair added to website…See pictures portfolio. Had my hair trimmed before pictures - feels good. Personal Overview: Another tough week, but well worth the effort….things are smoothing out………we don’t always learn things the easy way.
Lets review. It has been 4 or 5 days since those wonderful results and we are all very pleased. Thank-you one and all for your continued encouragement! Your e-mail, phone calls, cards and everything else have been a wonderful source of support. Still a long road to go, but everyday is closer to a complete and total cure. The interesting thing I find is that my results do not reflect how I am feeling. I actually feel worse then I have felt for about a month. I will speak to the DR’s about this on Wednesday the 26th to get their input. I am hopeful that it is simply a matter of my body working on healing and it doesn’t have a lot left over for the rest of me. My spleen and liver are taking turns giving me pain Last week when I was given the all clear on so many restrictions, that it was definitely a celebratory and festive mood around the Ellis’. When I returned from the hospital ( I had phoned Emmy to give her the great news) she had been out to the store to purchase many of my favorite foods I had not been able to eat. Is she the BEST…Emmy is! We also went out for lunch. Wow, what an experience; to go out when I had not been out and around town in almost 6 months! It will take some adjustment. Adjust I will. So in order to further help me adjust some friends suggested we go out for a special lunch on Thursday and celebrate. Aren’t friends Great! We did. Great time had by all….. Then on Friday morning I help Emmy with a little grocery shopping. A couple of friends had made arrangements to stop in around noon. They ended up staying until 7:00. Again a great time had by all. On Saturday, Emmy pick-up my 90 year Grandma, took her shopping and then Grams came over and we had a birthday supper for the both of us, as we were both born in March. Great to see Grams again, it has been far far to long. Sunday took it easy and help young Dave with his experiment for school. It was probably a little to much to soon, which also could explain the feeling I have with lack of the wellness I expected with such good blood results. But really, after almost 6 months of DR’s house arrest, it has been worth it. We will slow down now and take it a little more moderately. The DR’s did suggest that I start slow and build up over time. Changes to daily routine: The DR's have lifted my visitation ban - Come one come all. Effective March 24th, 2003 Caveats - possible cold, please don’t visit, call before coming limited exposure to children 10 and under no large groups take it slow and steady The DR's have also lifted my 150+ day house arrest - I am FREE!! Effective March 24, 2003….take it slow and steady The DR's have also lifted my food restrictions - oh great, I have been gaining to much weight while restricted; now, here comes the serious pounds! Bone Marrow Biopsy Date : On or before April 10th, 2003 GVHD : Greatly reduced - again under control Hemoglobin: 118 (last check-up 99, – Norm 140 - 180) – Last transfusion Dec 17th! Platelets: 79 (70 - Norm 180 - 300) White cells: 5.5 (6.4 – Norm 4.0 – 11.0) Neutraphils: 4.8(5.6 - Norm 2.5 – 7.5 ) Spleen: Continues to shrink Liver: Back in line Liver Enzymes: Normal ALP/59 ; AST/20 ; ALT/69 – little high ( 111 / 38 / 120) Total Bilirubin: 19 (21 – norm <22) Kidney Creatinine: Normal 111 ( 92 - Norm <107) Weight: 163lbs. / 74.0kgs. Easy does it Dave! Energy level: Lots of rest/sleep – some may call it hibernation…… Rest schedule: 7:30 PM – 7:30 AM // 1:00 PM - 4:00 PM ~ 14 – 16 hours/day Visitation ban: Restriction lifted Diet : Restrictions lifted!! House arrest: Restriction lifted Blood pressure: Normal 140 / 85 Cyclosporin : 200 mgs./ 2 daily Prednisone: 40 (50mgs. last week) Magnesium: Normal @ 0.87 (0.71) Calcium: Normal @ 2.43 (2.26) Potassium: Normal @ 3.7 (3.5) Juicing: 3 times / day mostly carrots, spinach and beets Water Intake: 7 + litres/day - Thirstier lately Hair growth: New Pictures of me with my curly hair added to website…See pictures portfolio. Had my hair trimmed before pictures - feels good. Personal Overview: Another tough week, but well worth the effort….things are smoothing out………we don’t always learn things the easy way.
CMV + Central Line + Aches/Pains + Nicknames ( A good meeting with the DR’s today even though there was a softening of the Hemoglobin, Platelets and White blood cell numbers. I spoke to the Dr’s about my mental state and how could my numbers get so good and yet I do not feel the positive effect as much as results show. Interestingly enough they explained that these are simply numbers and only tell part of the story – perhaps 50%. The other part comes from faith, attitude, etc. My results can be perfect and still I may not feel well…..Yeah, that would make me, ah, "normal"! Ha! Ha! Wow, this is great news. This is where I am at or at least work on daily, fits right in. Good answer I say. Then they add, why do you think we always ask " how are you feeling and how has your week been". Let me guess, not to pass the time…No! Ok so the penny, maybe nickel drops and I get it. What have I said all along; I learn a lesson and then need to learn it again. One day, perhaps it will stick. I am pumped……..simply words of encouragement can do so much for someone. Test it, give it a try on a loved one. See how you can help "pump them up"!! Then we will all be better off. Some of you may know that I have what is called a CVC line (nicknamed "Hickmen"). This is a double ended intravenous line that is surgical implanted into my chest (upper right side) and about 6-8 inches of line hangs out. The other end goes up under my skin and is tied off around the collar bone (to help prevent it from being pulled out) and then it is feed into a main artery that enters the heart. The line is then feed down this artery and the end of the tube sits about 2 millimeters into the heart. This was implanted before I entered the hospital and it permits easy access for taking blood, as well as provide for a very good enter point to give meds. I have had it for just over 6.5 months. The good news they would like to see about taking it out April 1, 2003. Providing all my counts remain strong (they will do a blood profile on me before removal) they will move ahead and take it out!! If they do not take it out, I am not allowed into pools, hot tubs etc as infection of this line is very serious – I guess. This line has been great and without it I could have had hundreds of needle pricks from all the blood work and meds. required. Since I am only on weekly blood withdrawal now it is deemed not as necessary……... Progress…….Yes, Progress……… Bone Marrow Biopsy Date : On or before April 1st, 2003 Highlights: Prednisone not dropped as GVHD is apparent and active Weight : up another 3 lbs. In one week. Yikes! Nicknames : chubby , pork jelly belly, b ball face, puffy. GVHD : Still present CMV: Negative (explanation of what this is next update) Aches/Pains: Liver, Spleen, Feet Hemoglobin: 116 (118, Norm 140-180) – Last transfusion Dec 17th, 2002! Platelets: 65 (79 - Norm 180 - 300) – Last transfusion Nov. 12th, 2002 White cells: 5.3 (5.5 – Norm 4.0 – 11.0) Neutraphils: 4.4 (4.8 - Norm 2.5 – 7.5 ) Spleen: Continues to shrink Liver: Having a GVHD attack Liver Enzymes: Normal ALP/50 ; AST/20 ; ALT/87 – little high ( 59 / 20 / 69 ) Total Bilirubin: 20 (19 – norm <22) Kidney Creatinine: 101 Normal ( 111 - Norm <107) Weight: 166lbs. / 75.1kgs. Energy level: Lots of rest/sleep – Prednisone starting to keep restless…… Rest schedule: 7:30 PM – 7:30 AM // 2:00 PM - 4:00 PM ~ 14 – 16 hours/day Visitation ban: Restriction lifted Diet : Restrictions lifted!! House arrest: Restriction lifted Blood pressure: 120 / 60 Normal ( 140 / 85 ) Cyclosporin : 200 mgs./ 2 daily Prednisone: 40 ( 40mgs. ) remains the same as last week Magnesium: 0.83 Normal @ (0.87) Calcium: 2.33 Normal @ (2.43) Potassium: 4.0 Normal @ (3.7) Juicing: 3 times / day mostly carrots, spinach, beets, celery and cucumber Fluid Intake: 6 litres/day water + 800 mls. Veggie juice + 500mls fruit juice + Misc. Hair growth: New Pictures now posted as of Mar. 24th Personal Overview: This week is going to be a good one…..Bring it on! |
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