Merry Christmas Everyone!
I'm enjoying this Christmas with my two beautiful daughters, extended hawaiian family and my beloved wife, Wendy. Wendy was born on Christmas, so we also get to celebrate her 40th birthday today in beautiful Hawaii. It's hard to believe that just a year ago I completed my pre-stem cell transplant testing and was informed that I was approved for the stem cell procedure that gave me my life back in less than 1 year.
Well my first marathon is in the books. After five months of rigorous training, I completed the 39th Honolulu Marathon on December 11th with a time of 4:19:36. I placed 2428 out of 19,078 runners and the pain only lasted a couple days afterwards. It was a great personal experience that I know I'm truly blessed to complete after all I've been through this year. My training buddies and I also used the event as a fundraising opportunity and we were able to raise just over $1000 for the Scleroderma Foundation.
I continue to see improvement in my overall health and contribute that to the stem cell transplant along with diet, exercise and plenty of rest. My annual follow-up appointment at Northwestern is in March and I will be sure to keep you all posted on my results.
If you're battling scleroderma, I hope this blog has been helpful in answering some of your questions about the process. Remember, there is hope out there, so keep fighting and pressing your medical team for answers to your questions.
As always, feel free to contact me at hawaiisclerodermanetwork@gmail.com if you have any further questions.
Sunday, December 25, 2011
Monday, October 31, 2011
Happy Halloween
Aloha Everyone!
It has been an exciting several weeks as I continue to notice steady improvement in overall lung function and energy levels. My training for the Honolulu Marathon on December 11th is in full swing now with an average of 20-40 miles logged each week. My last pre-marathon readiness series race was an 18.6 mile run on 23 Oct and I completed the race in 3:04:29.5 with a 9:54 mile pace. I've never been a long distance runner in the past, but I suddenly feel the urge to go the distance since my lungs feel so good. Prior to my stem cell transplant the farthest I had ever ran was 12 miles and that was approximately 14 years ago.
I'm running the Honolulu Marathon in December with a few close friends and we decided to use the event to raise money for scleroderma. Our fundraising website is located in the blog links on this page. My training buddies and I would REALLY appreciate you considering a donation and helping spread the word about our scleroderma fundraising efforts to others.
The Scleroderma Foundation published an article on my scleroderma story last month in their magazine, "The Voice." It provides an accurate overview of my scleroderma journey and I provided a link to the online article under the blog links on this page.
Well it's time to take the kids trick or treating. If you're battling scleroderma there is hope. Feel free to contact me at hawaiisclerodermanetwork@gmail.com if you have any further questions that can't be answered by this blog.
It has been an exciting several weeks as I continue to notice steady improvement in overall lung function and energy levels. My training for the Honolulu Marathon on December 11th is in full swing now with an average of 20-40 miles logged each week. My last pre-marathon readiness series race was an 18.6 mile run on 23 Oct and I completed the race in 3:04:29.5 with a 9:54 mile pace. I've never been a long distance runner in the past, but I suddenly feel the urge to go the distance since my lungs feel so good. Prior to my stem cell transplant the farthest I had ever ran was 12 miles and that was approximately 14 years ago.
I'm running the Honolulu Marathon in December with a few close friends and we decided to use the event to raise money for scleroderma. Our fundraising website is located in the blog links on this page. My training buddies and I would REALLY appreciate you considering a donation and helping spread the word about our scleroderma fundraising efforts to others.
The Scleroderma Foundation published an article on my scleroderma story last month in their magazine, "The Voice." It provides an accurate overview of my scleroderma journey and I provided a link to the online article under the blog links on this page.
Well it's time to take the kids trick or treating. If you're battling scleroderma there is hope. Feel free to contact me at hawaiisclerodermanetwork@gmail.com if you have any further questions that can't be answered by this blog.
Sunday, September 11, 2011
Six Month Update
It has been a very busy several weeks since my last update. My recovery continues to go well and I was happy to receive a great progress report during my six month follow-up in Chicago. My lungs feel great and I've been able to continue to increase my exercise capacity gradually. I'm still training for the Honolulu marathon in December and run approximately 20-25 miles per week with several races scheduled prior to the marathon to assist with conditioning. I've never run a marathon before, so this is a brand new experience for me. I completed the first pre-marathon race (15K) on 21 August in 1:28:15.5 with a pace of 9:28 per mile. I missed the 20K race on 2 Sep due to my vacation on the mainland, but was able to fit in a 24K run to stay on track. My next race is a 25K on 2 October.
While in Chicago for my six month follow-up, my doctor ordered a Pulmonary Function Test (PFT), echocardiogram, CT scan and multiple lab tests.
All tests indicated my Scleroderma had not progressed any further when compared to tests conducted prior to my transplant. Additionally, my PFT scores show a significant improvement in lung function. The technician who conducted the test said she never saw such significant improvements so quickly after transplant. Here are my numbers before and after transplant (same PFT reference for both tests):
Forced Vital Capacity (FVC) - 80% before and 87% after
Total Lung Capacity (TLC) - 87% before and 94% after
Carbon Monoxide Diffusing Capacity (DLCO) - 66% before and 83% after
My current meds include an antiviral called acyclovir, which I'll continue to take for six more months. I'm also on Naturethroid to address my under active thyroid. My transplant team no longer requires monthly lab tests. I'm scheduled to return to Chicago in February 2012 for my next follow-up appointment.
I'll continue with monthly updates or sooner if significant changes occur.
While in Chicago for my six month follow-up, my doctor ordered a Pulmonary Function Test (PFT), echocardiogram, CT scan and multiple lab tests.
All tests indicated my Scleroderma had not progressed any further when compared to tests conducted prior to my transplant. Additionally, my PFT scores show a significant improvement in lung function. The technician who conducted the test said she never saw such significant improvements so quickly after transplant. Here are my numbers before and after transplant (same PFT reference for both tests):
Forced Vital Capacity (FVC) - 80% before and 87% after
Total Lung Capacity (TLC) - 87% before and 94% after
Carbon Monoxide Diffusing Capacity (DLCO) - 66% before and 83% after
My current meds include an antiviral called acyclovir, which I'll continue to take for six more months. I'm also on Naturethroid to address my under active thyroid. My transplant team no longer requires monthly lab tests. I'm scheduled to return to Chicago in February 2012 for my next follow-up appointment.
I'll continue with monthly updates or sooner if significant changes occur.
Sunday, July 17, 2011
Four Month Update
All continues to go well with my recovery and I haven't experienced any major setbacks. I did catch a cold after my fun filled fourth of July weekend, but my immune system seemed to deal with it just fine.
I'm no longer on any antibiotics or anti-fungal medicine. Current meds include an antiviral called acyclovir and synthroid to address my under active thyroid. My labs are now monitored monthly.
I attended the annual National Scleroderma foundation on 8-10 July in San Francisco and it was a great event. I was able to share my story with patients as a speaker on one of the panels and learned a tremendous amount from doctors and other patients. I was truly impressed and inspired by the patients I met at the conference - they were amazing people!
I was able to fit in some good site seeing while in San Francisco to include Alcatraz, a city bus tour, a stroll along Fisherman's wharf and a sunset cruise in the bay. I also proposed to my girlfriend, Wendy, who has provided me with unconditional love and tremendous support prior to, and after my Scleroderma diagnosis. I decided to propose at sea while sailing under the Golden Gate Bridge during sunset. It was a perfect setting and I definitely caught her by surprise.
I'm scheduled to return to Chicago for my follow-up appointment on 24 August and will provide an update with the results.
I'm no longer on any antibiotics or anti-fungal medicine. Current meds include an antiviral called acyclovir and synthroid to address my under active thyroid. My labs are now monitored monthly.
I attended the annual National Scleroderma foundation on 8-10 July in San Francisco and it was a great event. I was able to share my story with patients as a speaker on one of the panels and learned a tremendous amount from doctors and other patients. I was truly impressed and inspired by the patients I met at the conference - they were amazing people!
I was able to fit in some good site seeing while in San Francisco to include Alcatraz, a city bus tour, a stroll along Fisherman's wharf and a sunset cruise in the bay. I also proposed to my girlfriend, Wendy, who has provided me with unconditional love and tremendous support prior to, and after my Scleroderma diagnosis. I decided to propose at sea while sailing under the Golden Gate Bridge during sunset. It was a perfect setting and I definitely caught her by surprise.
I'm scheduled to return to Chicago for my follow-up appointment on 24 August and will provide an update with the results.
Saturday, June 18, 2011
Three Month Update
I've continued to steadily improve over the past month. I'm back at work full time and I've resumed all of my normal activities (golf, hiking, running, scuba diving, etc.)
My subjective assessment is that my lung function continues to improve based on my performance during exercise. I'm running 4 miles at a 35 minute pace and usually average 2-3 runs per week. The shortness of breath upon exertion caused by inflammation in my lungs seems to be reduced significantly. I'm scheduled to return to Chicago the last week of August for my six month follow-up appointment. During my follow-up appointment I will complete a pulmonary function test and a high resolution CT scan of the chest. It will be very interesting to see how these compare to the tests prior to my transplant.
I'm also working with naturopathic doctors in addition to my conventional doctors. While my MDs have been great addressing my symptoms, they aren't trained to holistically treat a patient or address the underlying physiological imbalances that lead to disease. Thomas Edison is famous for saying" The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet and the cause and prevention of disease." A true whole body approach is key to staying healthy, and especially important when dealing with highly complex autoimmune conditions.
I am really looking forward to spending time in San Francisco in three weeks for the annual Scleroderma Foundation conference. It will no doubt be another great event and an opportunity to learn from so many others.
Saturday, May 21, 2011
Two Month Update
My recovery has continued to go very well over the past month. I've continued to steadily improve and haven't experienced any setbacks.
My most significant improvement has been increased lung function during exercise. I'm running 3 miles at a 28 minute pace and usually average 2-3 runs per week. Prior to the transplant, I had shortness of breath upon exertion caused by inflammation in my lungs, which has significantly decreased. Although I haven't had a pulmonary function test to confirm this, I can subjectively evaluate how my body is responding to the increased demand for oxygen with exercise.
This morning I completed my first hike since the stem cell transplant. It was approximately six miles and felt really good to get out there. I view it as an important milestone in my recovery.
My most significant improvement has been increased lung function during exercise. I'm running 3 miles at a 28 minute pace and usually average 2-3 runs per week. Prior to the transplant, I had shortness of breath upon exertion caused by inflammation in my lungs, which has significantly decreased. Although I haven't had a pulmonary function test to confirm this, I can subjectively evaluate how my body is responding to the increased demand for oxygen with exercise.
This morning I completed my first hike since the stem cell transplant. It was approximately six miles and felt really good to get out there. I view it as an important milestone in my recovery.
Getting a solid 8 hours of sleep every night has been key to my recovery, especially since increasing my activity level. I've also maintained a very healthy whole food diet to ensure my body has sufficient nutrients to heal itself.
I am really looking forward to the Scleroderma conference in July as it is an opportunity to learn more and help educate those who are just beginning their journey.
I am really looking forward to the Scleroderma conference in July as it is an opportunity to learn more and help educate those who are just beginning their journey.
Monday, April 18, 2011
One Month Update
Well, I have been back in Hawaii for one month now and I'm still bald, but feeling great. My hair is just starting to make a reappearance. My local doctors and my medical team at Northwestern have done a superb job working together to ensure I receive the best possible care. My bloodwork is drawn every Monday and the results are faxed to Northwestern for review. I'm on a combination of antiviral, antibiotic and antifungal meds, which are sometimes adjusted depending upon how my lab work looks. I'll begin tapering off the meds after my six month follow-up in Aug/Sep.
My only setback during the last month was caused by a Cytomegalovirus (CMV) infection during my second week home. CMV is a very common virus and most people don't even know they have it, because it rarely causes symptoms. However, in those who are immune compromised, CMV can cause serious issues and even be fatal if not treated. My symptoms included increased fatigue, weakness, night sweats and muscle aches. It was depressing upon the initial onset of my symptoms because I didn't know what was going on. It felt like my recovery was going backwards after feeling pretty good my first week home. Once my labs indicated a CMV infection it put my mind at ease, because at least I had an explanation of why I was feeling crappy. My docs quickly adjusted my antiviral medication and my symptoms started to subside in a couple of days. Getting plenty of rest in the months ahead will be key in enabling my immune system to stay strong enough to prevent reactivation of the virus.
I've walked 2-3 miles frequently during the past month, with the exception of the two week setback due to the CMV infection. I started increasing my activity level this week. My regimen includes 15-30 minutes of low impact cardio and light weight training. Three days ago I went jogging for the first time since the transplant and easily ran one mile at a good pace. I probably could have pushed two miles, but I wanted to see how my body felt after running one mile, before pushing my body further. Today I easily ran two miles with minor soreness in my legs. My lungs feel really good right now, much better than they did during the CMV infection. If I continue at this pace without further setbacks, my six month pulmonary function test will be well above my tests conducted prior to the transplant.
Support I've received from my family and friends has been crucial to my successful recovery. My military command has also been extremely supportive, which has put my mind at ease and is allowing me to focus on my recovery. I really appreciate my coworkers pulling together to cover the gap while I'm out, and I look forward to rejoining the team soon.
I've been in contact with the Scleroderma Foundation staff and they have extended me the opportunity to share my story on the patient panel at this year's National Scleroderma Patient Conference in San Francisco. It will take place in July, and I am very much looking forward to the opportunity to positively impact other patients on their journeys. I attended last year's conference in Boston, and was helped myself by the sharing of other patients' experiences. I am also in the process of filling out the required documents in order to start up a Hawaii Scleroderma Support Group Chapter. My goal is to assist other Scleroderma patients in Hawaii who may not be aware of the resources available to them. This will also provide them with additional education and emotional support from a network of patients with similar experiences, on island, where it is not currently available. This is something that would have been very helpful to me when I was first diagnosed.
I'll provide monthly updates and a synopsis of my follow-up at Northwestern in Aug/Sep.
My only setback during the last month was caused by a Cytomegalovirus (CMV) infection during my second week home. CMV is a very common virus and most people don't even know they have it, because it rarely causes symptoms. However, in those who are immune compromised, CMV can cause serious issues and even be fatal if not treated. My symptoms included increased fatigue, weakness, night sweats and muscle aches. It was depressing upon the initial onset of my symptoms because I didn't know what was going on. It felt like my recovery was going backwards after feeling pretty good my first week home. Once my labs indicated a CMV infection it put my mind at ease, because at least I had an explanation of why I was feeling crappy. My docs quickly adjusted my antiviral medication and my symptoms started to subside in a couple of days. Getting plenty of rest in the months ahead will be key in enabling my immune system to stay strong enough to prevent reactivation of the virus.
I've walked 2-3 miles frequently during the past month, with the exception of the two week setback due to the CMV infection. I started increasing my activity level this week. My regimen includes 15-30 minutes of low impact cardio and light weight training. Three days ago I went jogging for the first time since the transplant and easily ran one mile at a good pace. I probably could have pushed two miles, but I wanted to see how my body felt after running one mile, before pushing my body further. Today I easily ran two miles with minor soreness in my legs. My lungs feel really good right now, much better than they did during the CMV infection. If I continue at this pace without further setbacks, my six month pulmonary function test will be well above my tests conducted prior to the transplant.
Support I've received from my family and friends has been crucial to my successful recovery. My military command has also been extremely supportive, which has put my mind at ease and is allowing me to focus on my recovery. I really appreciate my coworkers pulling together to cover the gap while I'm out, and I look forward to rejoining the team soon.
I've been in contact with the Scleroderma Foundation staff and they have extended me the opportunity to share my story on the patient panel at this year's National Scleroderma Patient Conference in San Francisco. It will take place in July, and I am very much looking forward to the opportunity to positively impact other patients on their journeys. I attended last year's conference in Boston, and was helped myself by the sharing of other patients' experiences. I am also in the process of filling out the required documents in order to start up a Hawaii Scleroderma Support Group Chapter. My goal is to assist other Scleroderma patients in Hawaii who may not be aware of the resources available to them. This will also provide them with additional education and emotional support from a network of patients with similar experiences, on island, where it is not currently available. This is something that would have been very helpful to me when I was first diagnosed.
I'll provide monthly updates and a synopsis of my follow-up at Northwestern in Aug/Sep.
Wednesday, March 16, 2011
Transplant Day +16
The last several days since discharge have been uneventful in the hotel. It has been nice to get some quality uninterrupted sleep, but I still wake up every four hours or so due to night sweats. I haven't had the energy or desire to leave the room much since my discharge and venture out into the cold air, which has been really depressing. However, today the weather finally improved to almost 60 degrees, and it was nice to be able to shed some of the arctic gear and get outside. I had my lab work drawn in the morning and my follow up appointment in the afternoon. In between my labs and appointment I walked approx 1-2 miles and it felt great!
Over the next several months my immune system will continue to develop and become more mature. Right now my immune system is just like a newborn baby's. My doctor will monitor my labs very closely over the next 6 months to make sure I'm headed in the right direction. I'll remain on antibiotic, antiviral and anti-fungal medicine for 6-12 months as a precaution. If I get sick or my labs are abnormal, then my doc may have to adjust my meds to help my young immune system defenders fight off infection.
During my follow-up appointment today my doctor said that I'm doing VERY well and to take things slowly during the initial recovery period. I intend to exercise regularly beginning with a crawl, walk, and run mentality. I intend to slowly do more each day, and quit when my body tells me to stop. My doc said it's a 2-6 month initial recovery period depending on the individual, but I'm optimistic that I be back in the game sooner rather than later.
My bags are packed and I'm headed back to Hawaii tomorrow - woohoo!!:). I'm very much looking forward to leaving this cold weather in my wake. I'll return in six months for 2-3 days of follow-up tests that will be compared to my pre-stem cell tests to measure improvement.
Thanks to all my family, friends, and co-workers for your support during this difficult time. All the calls, cards, emails, care packages etc. were much appreciated. My next post on this blog will be after my six month follow-up, unless I experience significant changes over the next several months.
Over the next several months my immune system will continue to develop and become more mature. Right now my immune system is just like a newborn baby's. My doctor will monitor my labs very closely over the next 6 months to make sure I'm headed in the right direction. I'll remain on antibiotic, antiviral and anti-fungal medicine for 6-12 months as a precaution. If I get sick or my labs are abnormal, then my doc may have to adjust my meds to help my young immune system defenders fight off infection.
During my follow-up appointment today my doctor said that I'm doing VERY well and to take things slowly during the initial recovery period. I intend to exercise regularly beginning with a crawl, walk, and run mentality. I intend to slowly do more each day, and quit when my body tells me to stop. My doc said it's a 2-6 month initial recovery period depending on the individual, but I'm optimistic that I be back in the game sooner rather than later.
My bags are packed and I'm headed back to Hawaii tomorrow - woohoo!!:). I'm very much looking forward to leaving this cold weather in my wake. I'll return in six months for 2-3 days of follow-up tests that will be compared to my pre-stem cell tests to measure improvement.
Thanks to all my family, friends, and co-workers for your support during this difficult time. All the calls, cards, emails, care packages etc. were much appreciated. My next post on this blog will be after my six month follow-up, unless I experience significant changes over the next several months.
Thursday, March 10, 2011
Transplant Day +10 (Hospital Discharge Day!!!)
The pain in my legs and back subsided throughout the evening and will hopefully go away over the next several days. My most recent lab report this morning indicated my white blood cell count jumped to 4.5, which is well above the hospital discharge requirement of 1.0. All other blood counts continue to rise towards normal ranges.
I was disconnected from the IV pump machine at 8:30am which was such a good feeling. My doctor went over my discharge instructions around 2:00pm, and shortly after the nurse removed my PICC line and I was discharged from the hospital!!
My brother and I took a cab to my nearby hotel, and after settling into my room, my brother picked up my meds from the nearby Walgreens. Later in the evening my brother picked up some food from the nearby P.F. Changs. It was absolutely fantastic to eat something other than hospital food.
I look forward to an evening in a real bed without any interruptions.
I was disconnected from the IV pump machine at 8:30am which was such a good feeling. My doctor went over my discharge instructions around 2:00pm, and shortly after the nurse removed my PICC line and I was discharged from the hospital!!
My brother and I took a cab to my nearby hotel, and after settling into my room, my brother picked up my meds from the nearby Walgreens. Later in the evening my brother picked up some food from the nearby P.F. Changs. It was absolutely fantastic to eat something other than hospital food.
I look forward to an evening in a real bed without any interruptions.
Wednesday, March 9, 2011
Transplant Day +9 (Engraftment -- Woohoo!!!)
The pain in my legs and back has steadily increased over the past two days due to the Neupogen shots jump starting my stem cell engraftment process. The pain was manageable with low dose dilaudid yesterday, but today they had to up the dose to keep me from crying like a baby. Even with the increased dose, I'm still feeling intense pain in my lower back and legs, especially as the medicine wears off. It is now 10:30pm and my last dose was at 8:50pm. I'm hoping the pain subsides soon, or at least doesn't return until I can take my next dose at 11:50pm. Slight fevers still continue along with the pain, but drinking fluids and the cold wash cloth on the forehead have been doing the trick.
My most recent lab report came back at 6:00pm today and put a nice big smile on my face. My white blood cell count was 1.5 and all other blood counts were within hospital discharge limits - woohoo! No more Neupogen shots, platelets, blood transfusions, PICC line, waking at 2:00am for vital signs, etc:)
I will be discharged sometime tomorrow and stay at a hotel nearby with my brother, Carl, until my appointment next Wednesday the 16th. It will be a lifesaver having him around as my caregiver, as I still fatigue very quickly and require assistance with lifting, walking around, running errands, etc.
I plan on flying back to Hawaii on 17 March and can't wait to give my two little daughters, Wendy and my entire extended family hugs and kisses!
My most recent lab report came back at 6:00pm today and put a nice big smile on my face. My white blood cell count was 1.5 and all other blood counts were within hospital discharge limits - woohoo! No more Neupogen shots, platelets, blood transfusions, PICC line, waking at 2:00am for vital signs, etc:)
I will be discharged sometime tomorrow and stay at a hotel nearby with my brother, Carl, until my appointment next Wednesday the 16th. It will be a lifesaver having him around as my caregiver, as I still fatigue very quickly and require assistance with lifting, walking around, running errands, etc.
I plan on flying back to Hawaii on 17 March and can't wait to give my two little daughters, Wendy and my entire extended family hugs and kisses!
Monday, March 7, 2011
Transplant Day +7
My recovery has continued to progress in the right direction over the past couple of days. I've experienced an increase in body pain from the daily Neupogen shots, but this is actually a good sign because it tells me the Neupogen is working and engraftment is right around the corner. I also had a slight fever again today that only lasted a couple hours. My doctors said it was probably caused from an allergic reaction to the blood transfusion, or possibly the Neupogen shots. However, since fevers can be caused by more serious things, such as infection, they always draw blood cultures when I spike a fever since I have no immune system.
The new room has made a big difference. It's much more comforting to lay in bed with a spectacular view of Chicago, rather than looking at four dark walls.
I've continued to receive platelets daily and today I received two bags of red blood cells. My platelets and blood counts will remain low until I engraft, and then slowly start to rise. I'll continue to receive platelets and red blood cells as required in the next few days to maintain my numbers within acceptable limits.
My appetite continues to increase and I'm able to eat more every day. Nausea is a thing of the past, but fatigue continues as expected and will be something I'll have to deal with until I'm fully recovered.
My brother is staying with me in the hospital now and it has been great catching up with him. He is doing a great job and I appreciate him traveling all the way from Florida to take care of me.
The new room has made a big difference. It's much more comforting to lay in bed with a spectacular view of Chicago, rather than looking at four dark walls.
I've continued to receive platelets daily and today I received two bags of red blood cells. My platelets and blood counts will remain low until I engraft, and then slowly start to rise. I'll continue to receive platelets and red blood cells as required in the next few days to maintain my numbers within acceptable limits.
My appetite continues to increase and I'm able to eat more every day. Nausea is a thing of the past, but fatigue continues as expected and will be something I'll have to deal with until I'm fully recovered.
My brother is staying with me in the hospital now and it has been great catching up with him. He is doing a great job and I appreciate him traveling all the way from Florida to take care of me.
Saturday, March 5, 2011
Transplant Day +5
Yesterday (Transplant Day +4), went well, overall. My platelet and blood cell counts are dropping, as anticipated. The fatigue continues as expected. Merely eating is taxing, and I have to eat more slowly than normal as even digestion is energy-consuming. Heck, even bowel movements can be exhausting!
The doctors prepared me by telling me to expect most of what I am experiencing, so I understand that it is all part of the process, and I try to remind myself that this is all "normal" and that "this too shall pass."
Today, my friend's, Mike and Mario, came to visit and delivered a fresh load of laundry, which cheered me.
I think I am back on track, for the most part, with my meals, and over the nausea, which is fantastic.
The rest of the evening was uneventful. 'Started to watch a comedy, and fell asleep for the night. I think my body may finally be starting to fall into a routine, and be adjusting to a few hours of sleep here and there throughout the night, with a nap during the day.
This morning, (Transplant Day +5), I was visited by a team of about 10 doctors from around the world who administer Dr. Burt's stem cell protocol in their countries. They were here at Northwestern Medical Center for a one day Stem Cell Conference, hosted by Dr. Burt. They were very kind and assured me that I chose the right treatment, stating that the majority of their patients are trying to get the same procedure. They were quite impressed with the research I have done on my own, and asked if I would be willing to correspond with some other patients to share my experience. I feel very fortunate to be here getting this treatment.
Due to my low platelet count, I received my first bag of platelets today, and anticipate receiving red blood cells within the next few days. I also started receiving Neupogen today, which is a growth factor given by injection in my abdomen, to help increase the rate of stem cell production. Side effects of Neupogen can include fever, achiness, and bone & joint pain, all of which I have begun to experience, and can take pain medication as needed. 'Just to be on the safe side, blood cultures were drawn due to my slightly elevated temperature to rule out any possible infection.
My brother, Carl, arrived from Florida today and will be taking Wendy's place after she leaves to go back to Hawaii tomorrow. It is really good to see him, as I hadn't seen him in nearly three years. We will have a lot of catching up to do. Wendy has provided great support while she's been here, and I don't know how I would've gotten through the past 11 days without her. A quality, loving, caregiver is a crucial component of the stem cell transplant process. I will miss her.
I also got my daily call from my girls, which was the highlight of my day. Taylor, my youngest, told me all about her modeling photo shoot, which was a huge success. She is on track for her beauty pageant in May, which I am looking forward to attending. She showed me her new dresses via Skype and has been diligently practicing piano for the talent portion of the competition. Alex, my oldest, was very excited about winning first place in her speech competition, which will take her to the State Finals at the Hilton Hawaiian Village next month. I am so proud of both of them and the wonderful young ladies they are growing up to be. They make me so happy.
Oh, I almost forgot..... tomorrow, I am moving to a much bigger, corner room, in which two of the adjoining walls are comprised completely of glass windows. This provides a partial lake view as well a spectacular view of the city. This is a much welcomed move as the room I am currently in is a broom closet in comparison, with only one tiny window, which I refer to as "solitary confinement". I guess all those boxes of macadamia nut candies I brought from Hawaii for the nurses, paid off in the long run. :)
The doctors prepared me by telling me to expect most of what I am experiencing, so I understand that it is all part of the process, and I try to remind myself that this is all "normal" and that "this too shall pass."
Today, my friend's, Mike and Mario, came to visit and delivered a fresh load of laundry, which cheered me.
I think I am back on track, for the most part, with my meals, and over the nausea, which is fantastic.
The rest of the evening was uneventful. 'Started to watch a comedy, and fell asleep for the night. I think my body may finally be starting to fall into a routine, and be adjusting to a few hours of sleep here and there throughout the night, with a nap during the day.
This morning, (Transplant Day +5), I was visited by a team of about 10 doctors from around the world who administer Dr. Burt's stem cell protocol in their countries. They were here at Northwestern Medical Center for a one day Stem Cell Conference, hosted by Dr. Burt. They were very kind and assured me that I chose the right treatment, stating that the majority of their patients are trying to get the same procedure. They were quite impressed with the research I have done on my own, and asked if I would be willing to correspond with some other patients to share my experience. I feel very fortunate to be here getting this treatment.
Due to my low platelet count, I received my first bag of platelets today, and anticipate receiving red blood cells within the next few days. I also started receiving Neupogen today, which is a growth factor given by injection in my abdomen, to help increase the rate of stem cell production. Side effects of Neupogen can include fever, achiness, and bone & joint pain, all of which I have begun to experience, and can take pain medication as needed. 'Just to be on the safe side, blood cultures were drawn due to my slightly elevated temperature to rule out any possible infection.
My brother, Carl, arrived from Florida today and will be taking Wendy's place after she leaves to go back to Hawaii tomorrow. It is really good to see him, as I hadn't seen him in nearly three years. We will have a lot of catching up to do. Wendy has provided great support while she's been here, and I don't know how I would've gotten through the past 11 days without her. A quality, loving, caregiver is a crucial component of the stem cell transplant process. I will miss her.
I also got my daily call from my girls, which was the highlight of my day. Taylor, my youngest, told me all about her modeling photo shoot, which was a huge success. She is on track for her beauty pageant in May, which I am looking forward to attending. She showed me her new dresses via Skype and has been diligently practicing piano for the talent portion of the competition. Alex, my oldest, was very excited about winning first place in her speech competition, which will take her to the State Finals at the Hilton Hawaiian Village next month. I am so proud of both of them and the wonderful young ladies they are growing up to be. They make me so happy.
Oh, I almost forgot..... tomorrow, I am moving to a much bigger, corner room, in which two of the adjoining walls are comprised completely of glass windows. This provides a partial lake view as well a spectacular view of the city. This is a much welcomed move as the room I am currently in is a broom closet in comparison, with only one tiny window, which I refer to as "solitary confinement". I guess all those boxes of macadamia nut candies I brought from Hawaii for the nurses, paid off in the long run. :)
Thursday, March 3, 2011
Transplant Day +3
It has been three days since my stem cell transplant and I am doing pretty well. My doctors visit me twice daily and have been very happy with my progress. As of yesterday, labs officially indicated my old army of immune cells that went rogue and were attacking their own forces (my healthy tissue) have been destroyed. A new army is in the infancy stages of development from my 10 million stem cells reinfused 3 days prior. It will be quite some time before I have a seasoned, well trained army of immune cells ready to fight and win complex wars against my body from foreign invaders. However, when my new army is formed around day transplant day +10, they will have sufficient training to fight off small scale attacks and will have assistance from antiviral and antibiotics forces until they fully develop in the months to come.
Thankfully, I am mostly over the nausea and have been able to hold down my last few meals. I am eating more, and most of my gastrointestinal issues have resolved, including the constipation, for which I am very grateful. One thing I do continue to have, and apparently will have for months to come, according to my doctors, is fatigue. I do try to get up and walk laps around the unit a few times a day, but tire quickly, as the level of cells that carry oxygen molecules in my blood is decreased, as expected.
Yesterday, my friend, Mike, came by again and made us laugh as usual. His upbeat personality and sense of humor helped uplift my mood. We reminisced about some of the good ole' days back when we were both enlisted in the Navy. Mike also arrived with a fresh supply of laundry, which I really appreciated, as personal laundry services are very limited in the area.
The last several days I have received calls of encouragement from shipmates I haven't seen in many years. This morning, I got a call from an old shipmate, Ron, who retired from the Navy in 2003, but is currently a contractor serving in Iraq. It was great to hear from him and laugh and joke about old times. Time passes so quickly. It means a lot to keep in touch with friends and to know that so many people care.
Wendy and I have been watching some classical comedies including, "Revenge of the Nerds", and "Back to School", which we haven't seen in so long, that it was like watching them for the first time. We laughed a lot, which is good for healing and helped to pass some time. Today, we attended a class provided by "Gilda's Club", which is a cancer support group, started in the name of Gilda Radner, from Saturday Night Live, who passed away from cancer. We learned relaxation techniques in "Chair Yoga", which may come in handy when I return back to work. Also, we did some art therapy, which was quite relaxing in itself, despite my lack of artistic ability. It made us realize how rarely we remember to stop and take the time to just play or meditate, which is so important for a healthy balance, and overall well-being.
Over the next few days my primary goals are to rest, prevent infection, and let my stem cells mature and engraft. Sadly, Wendy returns to Hawaii on Sunday and goes back work on Monday. My brother arrives tomorrow and will stay with me until I return to Hawaii.
If all continues to go well, I can be discharged from the hospital as early as 11 March and I would stay in the local area until my follow up appointment with Dr. Burt on 16 March. This means I could be back in Hawaii as early as 17 March. :)
Thankfully, I am mostly over the nausea and have been able to hold down my last few meals. I am eating more, and most of my gastrointestinal issues have resolved, including the constipation, for which I am very grateful. One thing I do continue to have, and apparently will have for months to come, according to my doctors, is fatigue. I do try to get up and walk laps around the unit a few times a day, but tire quickly, as the level of cells that carry oxygen molecules in my blood is decreased, as expected.
Yesterday, my friend, Mike, came by again and made us laugh as usual. His upbeat personality and sense of humor helped uplift my mood. We reminisced about some of the good ole' days back when we were both enlisted in the Navy. Mike also arrived with a fresh supply of laundry, which I really appreciated, as personal laundry services are very limited in the area.
The last several days I have received calls of encouragement from shipmates I haven't seen in many years. This morning, I got a call from an old shipmate, Ron, who retired from the Navy in 2003, but is currently a contractor serving in Iraq. It was great to hear from him and laugh and joke about old times. Time passes so quickly. It means a lot to keep in touch with friends and to know that so many people care.
Wendy and I have been watching some classical comedies including, "Revenge of the Nerds", and "Back to School", which we haven't seen in so long, that it was like watching them for the first time. We laughed a lot, which is good for healing and helped to pass some time. Today, we attended a class provided by "Gilda's Club", which is a cancer support group, started in the name of Gilda Radner, from Saturday Night Live, who passed away from cancer. We learned relaxation techniques in "Chair Yoga", which may come in handy when I return back to work. Also, we did some art therapy, which was quite relaxing in itself, despite my lack of artistic ability. It made us realize how rarely we remember to stop and take the time to just play or meditate, which is so important for a healthy balance, and overall well-being.
Over the next few days my primary goals are to rest, prevent infection, and let my stem cells mature and engraft. Sadly, Wendy returns to Hawaii on Sunday and goes back work on Monday. My brother arrives tomorrow and will stay with me until I return to Hawaii.
If all continues to go well, I can be discharged from the hospital as early as 11 March and I would stay in the local area until my follow up appointment with Dr. Burt on 16 March. This means I could be back in Hawaii as early as 17 March. :)
Monday, February 28, 2011
Transplant Day 0 (Stem Cell Reinfusion - a.k.a "My New Start")
Well, last night I didn't get a lick of sleep due to the heartburn, abdominal cramping, gas, and constipation, along with the many interruptions from staff throughout the night. This morning I am feeling very irritable and my patience is short. I feel like I'm on an emotional rollercoaster as I don't know what is happening with my body and I am over-tired from lack of sleep. The Dr. said that the steroids are making my emotions go haywire.
I tried eating a little for breakfast (apple juice over ice, a couple spoonfuls of orange sherbet, and a spoonful of applesauce), but became nauseated and stopped. I'm going to try to force myself to get up and take a shower before my stem cell transplant that is scheduled for 11:00 a.m. They are going to premedicate me with IV Benadryl and Ativan, so I'm hoping that will help me get a little sleep this afternoon.........
(Later today......)
At around 11:00, my stem cells were wheeled into my room inside a large "Cryofreeze" container filled with liquid nitrogen, where they have been stored since they were harvested on 10 February. The lab technician pulled the frozen cells from the container, which were followed by a cloud of "liquid nitrogen smoke," and began the washing and thawing process. The whole thing was pretty amazing. Present for the reinfusion were myself, my girlfriend, Wendy, Dr. Burt, Dr. Jane, Amy (physician's assistant), the nurse, Esther, the lab technician, and Jeannie, the Chaplain. They all gathered around my bed and the Chaplain said a blessing and a prayer over me and my stem cells, which was very nice. I strongly believe in positive, healing energy and the power of prayer. After the blessing, the nurse hung the bag containing my stem cells, hooked the tubing up to the pump, and connected it to my IV access port. She then primed the tubing and the infusion of my brand new stem cells into my body, also known as the "rebirthing process", began!
At first, I was a little nervous, not quite sure what to expect, however, it all went quite smoothly. The most I felt was a little flushing of my face, but otherwise it was uneventful, thankfully. The whole infusion lasted about 15 minutes, during which time the nurse monitored my vital signs, which remained stable throughout. After the infusion, I finally fell asleep with the help of the Ativan and Benadryl, for about 2 1/2 hours. Woohoo!!!
I felt refreshed after my nap and the relief I finally received from some of the gastrointestinal medications.
For dinner, I had vegetable lasagna and chicken noodle soup, which so far, have stayed down and no nausea. Fingers crossed.
After dinner, Kim, the other transplant recipient who has been going through the phases of this process on the same schedule as I, asked me to come to the Visitor's Lounge to take pictures. When I got there, Wendy (my girlfriend) and two of Kim's friends walked in singing "Happy Birthday", carrying an ice cream cake and balloons, which was a thoughtful surprise. After cutting the cake and taking photos, we had a toast (of sparkling Jasmine tea) to a lifetime of happiness, health, and wellness! It was a nice way to celebrate our new start in life, with friends and loved ones there to share it with us.
After returning to my room, I skyped with my two precious daughters, who always uplift me and give me motivation. Getting to see their smiling faces makes me feel better.
I will be getting ready for bed soon, and Wendy and I are both looking forward to a restful night's sleep, since the chemotherapy and Rabbit-ATG are done now. Although, the doctors say I can still expect to feel crappy over the next few days, until the chemo is completely out of my system, I'm doing my best to remain positive. I don't expect too many changes if all goes well over the next few days, as at this point, we are mostly waiting for the stem cells to multiply and engraft in my body, where they replace destroyed tissue and resume my normal blood cell production.
I tried eating a little for breakfast (apple juice over ice, a couple spoonfuls of orange sherbet, and a spoonful of applesauce), but became nauseated and stopped. I'm going to try to force myself to get up and take a shower before my stem cell transplant that is scheduled for 11:00 a.m. They are going to premedicate me with IV Benadryl and Ativan, so I'm hoping that will help me get a little sleep this afternoon.........
(Later today......)
At around 11:00, my stem cells were wheeled into my room inside a large "Cryofreeze" container filled with liquid nitrogen, where they have been stored since they were harvested on 10 February. The lab technician pulled the frozen cells from the container, which were followed by a cloud of "liquid nitrogen smoke," and began the washing and thawing process. The whole thing was pretty amazing. Present for the reinfusion were myself, my girlfriend, Wendy, Dr. Burt, Dr. Jane, Amy (physician's assistant), the nurse, Esther, the lab technician, and Jeannie, the Chaplain. They all gathered around my bed and the Chaplain said a blessing and a prayer over me and my stem cells, which was very nice. I strongly believe in positive, healing energy and the power of prayer. After the blessing, the nurse hung the bag containing my stem cells, hooked the tubing up to the pump, and connected it to my IV access port. She then primed the tubing and the infusion of my brand new stem cells into my body, also known as the "rebirthing process", began!
At first, I was a little nervous, not quite sure what to expect, however, it all went quite smoothly. The most I felt was a little flushing of my face, but otherwise it was uneventful, thankfully. The whole infusion lasted about 15 minutes, during which time the nurse monitored my vital signs, which remained stable throughout. After the infusion, I finally fell asleep with the help of the Ativan and Benadryl, for about 2 1/2 hours. Woohoo!!!
I felt refreshed after my nap and the relief I finally received from some of the gastrointestinal medications.
For dinner, I had vegetable lasagna and chicken noodle soup, which so far, have stayed down and no nausea. Fingers crossed.
After dinner, Kim, the other transplant recipient who has been going through the phases of this process on the same schedule as I, asked me to come to the Visitor's Lounge to take pictures. When I got there, Wendy (my girlfriend) and two of Kim's friends walked in singing "Happy Birthday", carrying an ice cream cake and balloons, which was a thoughtful surprise. After cutting the cake and taking photos, we had a toast (of sparkling Jasmine tea) to a lifetime of happiness, health, and wellness! It was a nice way to celebrate our new start in life, with friends and loved ones there to share it with us.
After returning to my room, I skyped with my two precious daughters, who always uplift me and give me motivation. Getting to see their smiling faces makes me feel better.
I will be getting ready for bed soon, and Wendy and I are both looking forward to a restful night's sleep, since the chemotherapy and Rabbit-ATG are done now. Although, the doctors say I can still expect to feel crappy over the next few days, until the chemo is completely out of my system, I'm doing my best to remain positive. I don't expect too many changes if all goes well over the next few days, as at this point, we are mostly waiting for the stem cells to multiply and engraft in my body, where they replace destroyed tissue and resume my normal blood cell production.
Sunday, February 27, 2011
Transplant Day -1
This morning I did not eat much for breakfast. I just don't have an appetite right now. Today is Sunday, a day of rest. No chemotherapy today, although I will still get the Rabbit-ATG tonight.
My best friend, Mike, who I ironically met in Chicago 20 years ago while attending Navy "A" School, stopped by for a visit today. He dropped off some laundry he was kind enough to do for me. His upbeat personality and witty sense of humor gave me some comic relief and helped distract me from what I'm going through.
After he left, I ate some pizza, which seemed to go down okay.
This evening, I am having lots of terrible heartburn (Dr. said it is from the Cytoxan, the chemotherapy), gas, bloating, and constipation. All of these make for much discomfort and I am having a very difficult time falling asleep. I have the head of my bed elevated to help with the gastric acid, but it's not making a whole lot of difference. The IV fluids I was being given for hydration have been discontinued, so I am trying to drink lots of water, however, it's hard to keep it down with the nausea on top of everything else.
'Working on trying to relax and get some sleep before the big day tomorrow.
My best friend, Mike, who I ironically met in Chicago 20 years ago while attending Navy "A" School, stopped by for a visit today. He dropped off some laundry he was kind enough to do for me. His upbeat personality and witty sense of humor gave me some comic relief and helped distract me from what I'm going through.
After he left, I ate some pizza, which seemed to go down okay.
This evening, I am having lots of terrible heartburn (Dr. said it is from the Cytoxan, the chemotherapy), gas, bloating, and constipation. All of these make for much discomfort and I am having a very difficult time falling asleep. I have the head of my bed elevated to help with the gastric acid, but it's not making a whole lot of difference. The IV fluids I was being given for hydration have been discontinued, so I am trying to drink lots of water, however, it's hard to keep it down with the nausea on top of everything else.
'Working on trying to relax and get some sleep before the big day tomorrow.
Saturday, February 26, 2011
Transplant Day -2
I started the morning off with a walk around the unit, socializing with some of the other patients. I didn't have much of an appetite, so I skipped breakfast. Later in the morning, one of Dr. Burt's previous stem cell patients for Scleroderma, who lives here in Chicago, stopped by to share her experience with me. She had had extreme skin tightness and severe contractures of her fingers, joint stiffness and pain, along with shortness of breath. She had her transplant five years ago and reported having tremendous success. All of her symptoms have been reversed fully, except for some slight tendon contractures in her fingers, which she is still working out through occupational therapy. She said she is leading a very active lifestyle and feeling great. I found her visit to be very encouraging and uplifting.
After lunch, I became nauseated, so the nurse gave me some Compazine. Within minutes, I began feeling incredibly anxious and needed to jump up and do a few laps around the hall in an attempt an to "burn off the adrenaline." It was a little bit of a scare as I didn't know what was happening to me. When the nurse realized I was having a reaction to the medication, she quickly gave me some Ativan, which calmed me down and knocked me out for a little while. When I awoke, I ate some soup and chocolate chip ice cream, however, unfortunately my stomach was unwilling to cooperate. I vomited once again and felt an immediate sense of relief.
At 8:30pm I received my last dose of chemotherapy (YES!!!) along with Benadryl, which pretty much knocked me out for the next four hours.
After lunch, I became nauseated, so the nurse gave me some Compazine. Within minutes, I began feeling incredibly anxious and needed to jump up and do a few laps around the hall in an attempt an to "burn off the adrenaline." It was a little bit of a scare as I didn't know what was happening to me. When the nurse realized I was having a reaction to the medication, she quickly gave me some Ativan, which calmed me down and knocked me out for a little while. When I awoke, I ate some soup and chocolate chip ice cream, however, unfortunately my stomach was unwilling to cooperate. I vomited once again and felt an immediate sense of relief.
At 8:30pm I received my last dose of chemotherapy (YES!!!) along with Benadryl, which pretty much knocked me out for the next four hours.
Friday, February 25, 2011
Transplant Day -3
This morning started off pretty well, except that my lab work indicated I was low in Magnesium, Phosphate, and Potassium, more than likely caused by the diuretics. I was given these electrolytes intravenously to help bring these levels back up.
I skyped with my friend, Gary, in Italy, and socialized with some other patients, exchanging our experiences. Meeting and hearing other patients' stories reminds me just how important it is to be grateful for everything we have, especially the love of family and friends. I was able to eat a good breakfast, but lost my appetite before lunch as the nausea set in. I felt fatigued and nauseous all afternoon, but forced down a big burrito, in hopes that it would stay down, which turned out to be a big mistake. After churning in my stomach for a couple of hours, it finally made its way back up, which gave me great relief.
The highlights of my evening were skyping with my two beautiful daughters who always cheer me up and give me inspiration, followed by a hot foot bath with mineral salts and essential oils of peppermint and lavender, before an awesome foot massage given by my private nurse and loving girlfriend, Wendy. :)
I was able to keep down some soup and crackers, along with orange sherbet and ginger ale for dinner. Then, I started my third round of chemotherapy at 8:00 pm. It is now almost midnight and I'm hoping to get some decent sleep after my diuretic wears off. It usually keeps me up urinating for a couple of hours.
Three more days until transplant!!!
I skyped with my friend, Gary, in Italy, and socialized with some other patients, exchanging our experiences. Meeting and hearing other patients' stories reminds me just how important it is to be grateful for everything we have, especially the love of family and friends. I was able to eat a good breakfast, but lost my appetite before lunch as the nausea set in. I felt fatigued and nauseous all afternoon, but forced down a big burrito, in hopes that it would stay down, which turned out to be a big mistake. After churning in my stomach for a couple of hours, it finally made its way back up, which gave me great relief.
The highlights of my evening were skyping with my two beautiful daughters who always cheer me up and give me inspiration, followed by a hot foot bath with mineral salts and essential oils of peppermint and lavender, before an awesome foot massage given by my private nurse and loving girlfriend, Wendy. :)
I was able to keep down some soup and crackers, along with orange sherbet and ginger ale for dinner. Then, I started my third round of chemotherapy at 8:00 pm. It is now almost midnight and I'm hoping to get some decent sleep after my diuretic wears off. It usually keeps me up urinating for a couple of hours.
Three more days until transplant!!!
Thursday, February 24, 2011
Transplant Day -4
I just completed my second round of chemotherapy tonight and I'm not feeling too bad. The only side effects I experienced were a metallic taste in my mouth after chemotherapy and a slight headache earlier today that subsided after I took some Tylenol with codeine. I receive my chemotherapy at 8:00pm everyday due to delays in getting my blood work back from the lab yesterday. My chemotherapy lasts approximately 2 hours and then is followed by the rabbit ATG that runs for 10 hours. The downside to receiving the chemotherapy late is I don't get much sleep at night because I have to flush my bladder frequently to prevent the chemotherapy from crystalizing in my bladder and causing bleeding.
The staff here has been absolutely fantastic in providing quality care. My girlfriend Wendy is also staying in the room with me and has provided great moral support. Wendy departs on 6 March to head back to work in Hawaii. My brother will arrive on 5 March and stay with me until I'm discharged.
4 more days until the transplant!!
The staff here has been absolutely fantastic in providing quality care. My girlfriend Wendy is also staying in the room with me and has provided great moral support. Wendy departs on 6 March to head back to work in Hawaii. My brother will arrive on 5 March and stay with me until I'm discharged.
4 more days until the transplant!!
Wednesday, February 23, 2011
Transplant Day -5
I was severely fatigued 2-3 days after the stem cell harvest on 10 Feb, but I started feeling much better after day 5 back in Hawaii. My hair began falling out on 16 Feb (17 days after mobilization chemo) and I decided to shave bald before departing Hawaii, so I wouldn't have to deal with the hair in the hospital.
I returned to Chicago on 21 Feb and reported to Northwestern on 22 Feb to have a Peripherally Inserted Central Catheter (PICC) line inserted. My nurses will use the PICC line to administer my chemotherapy, misc meds, fluids and draw blood without having to stick me multiple times with a needle. The PICC line insertion was pretty painless and only took about 30 minutes once an operating room became available. More details on a PICC line can be found at http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter.
I was admitted to the 15th floor of the Prentice Women's Hospital at 0730am today. The 15th and 16th floors of the Prentice building are designed with special filtration systems to lower the risk of infection in immunosuppressed patients. Patients on these floors receive chemotherapy as part of an auto-immune stem cell transplant or to treat blood cancers.
Once my labs come back and my pre-chemotherapy meds are administered, I'll receive 4 grams of cyclophosphamide chemo, followed by anti-thymocyte immune globulin (a.k.a. Rabbit ATG) to further aid in the destruction of my immune system T-cells. This process will be repeated over the next 4 days to wipe out my immune system and then my harvested stem cells will be reinfused into me on 28 Feb. After stem cell reinfusion, the immune system rebuilding and recovery process begins.
Additional info regarding rabbit ATG and cyclophosphamide can be found at http://en.wikipedia.org/wiki/Anti-thymocyte_globulin and http://en.wikipedia.org/wiki/Cyclophosphamide, respectively.
I returned to Chicago on 21 Feb and reported to Northwestern on 22 Feb to have a Peripherally Inserted Central Catheter (PICC) line inserted. My nurses will use the PICC line to administer my chemotherapy, misc meds, fluids and draw blood without having to stick me multiple times with a needle. The PICC line insertion was pretty painless and only took about 30 minutes once an operating room became available. More details on a PICC line can be found at http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter.
I was admitted to the 15th floor of the Prentice Women's Hospital at 0730am today. The 15th and 16th floors of the Prentice building are designed with special filtration systems to lower the risk of infection in immunosuppressed patients. Patients on these floors receive chemotherapy as part of an auto-immune stem cell transplant or to treat blood cancers.
Once my labs come back and my pre-chemotherapy meds are administered, I'll receive 4 grams of cyclophosphamide chemo, followed by anti-thymocyte immune globulin (a.k.a. Rabbit ATG) to further aid in the destruction of my immune system T-cells. This process will be repeated over the next 4 days to wipe out my immune system and then my harvested stem cells will be reinfused into me on 28 Feb. After stem cell reinfusion, the immune system rebuilding and recovery process begins.
Additional info regarding rabbit ATG and cyclophosphamide can be found at http://en.wikipedia.org/wiki/Anti-thymocyte_globulin and http://en.wikipedia.org/wiki/Cyclophosphamide, respectively.
Thursday, February 10, 2011
Stem Cell Harvest
The past several days since my previous post have been pretty much uneventful. I followed the doctor's mobilization instructions (explained in previous posts) and remained bunkered down in the hotel due to the severe cold weather. I did experience intense bone pain Tuesday evening that kept me up most of the night, but after adjusting my pain meds on Wednesday I was able to control the pain and get some rest that evening. The bone pain is a sign that the bone marrow is "revving" up (working overtime) – in my case to produce new white blood cells. My lab work indicated I was probably Neutropenic for a short period on Tuesday morning and then my white blood cell count started its recovery later in the day when I started to experience the pain.
At 08:30am I reported to Northwestern to have a vascular catheter placed in my neck to facilitate the large volume of blood cycled through the stem cell collection machine during the aphereris process. The process of inserting the catheter consists mostly of prep work and usually takes approx 30 minutes. However, due to hospital delays, I didn't get seen by the doctor until approx 11:00am and the catheter was completed around 11:30am.
After the catheter was complete I ate lunch and proceeded to the blood center to begin the stem cell collection process. Once I arrived at the blood center they nurse drew my blood and told me to come back for the results in 90 minutes. When I returned the nurse told me my white blood cell count looked very good and hooked me up to the stem cell collection machine (see picture at bottom of blog). Once hooked up, it took approx 3 hours to obtain a sufficient number of cells. The amount of time a person is hooked up to the machine varies based on a person’s weight and the number of stem cells required for their treatment regimen. The minimum number of stem cells needed for my treatment regimen is 2 million. During the collection I sat in a recliner and tolerated the procedure fairly well. I felt an increase in fatigue, minor tingling in my extremities and felt a little cold throughout the process.
My collection finished at approx 4:45pm and my stem cells were sent to the lab to ensure a sufficient number of stem cells were collected before they removed the catheter. At approx 6:30pm the results were back and I had a whopping 20 million stem cells in the bag! It took the nurse approx 10 minutes to remove the catheter and after my vital signs were checked I was cleared to return to the hotel.
Overall it has been a very successful stem cell mobilization & harvest phase. I'll rest tomorrow and head back to Hawaii on Saturday morning. The objective over the next 10 days is to stay healthy, get sufficient rest and prepare myself mentally for the transplant.
Next update will occur during the transplant phase which begins on 23 February.
Thanks for all the support and prayers!
At 08:30am I reported to Northwestern to have a vascular catheter placed in my neck to facilitate the large volume of blood cycled through the stem cell collection machine during the aphereris process. The process of inserting the catheter consists mostly of prep work and usually takes approx 30 minutes. However, due to hospital delays, I didn't get seen by the doctor until approx 11:00am and the catheter was completed around 11:30am.
After the catheter was complete I ate lunch and proceeded to the blood center to begin the stem cell collection process. Once I arrived at the blood center they nurse drew my blood and told me to come back for the results in 90 minutes. When I returned the nurse told me my white blood cell count looked very good and hooked me up to the stem cell collection machine (see picture at bottom of blog). Once hooked up, it took approx 3 hours to obtain a sufficient number of cells. The amount of time a person is hooked up to the machine varies based on a person’s weight and the number of stem cells required for their treatment regimen. The minimum number of stem cells needed for my treatment regimen is 2 million. During the collection I sat in a recliner and tolerated the procedure fairly well. I felt an increase in fatigue, minor tingling in my extremities and felt a little cold throughout the process.
My collection finished at approx 4:45pm and my stem cells were sent to the lab to ensure a sufficient number of stem cells were collected before they removed the catheter. At approx 6:30pm the results were back and I had a whopping 20 million stem cells in the bag! It took the nurse approx 10 minutes to remove the catheter and after my vital signs were checked I was cleared to return to the hotel.
Overall it has been a very successful stem cell mobilization & harvest phase. I'll rest tomorrow and head back to Hawaii on Saturday morning. The objective over the next 10 days is to stay healthy, get sufficient rest and prepare myself mentally for the transplant.
Next update will occur during the transplant phase which begins on 23 February.
Thanks for all the support and prayers!
Friday, February 4, 2011
Mobilization Day 5
I was discharged from the hospital on Tuesday around 4:00pm during the blizzard and made the short walk across Michigan Ave. back to the Omni hotel. Overall, I have felt pretty good since leaving the hospital, just slightly more fatigued than usual.
After resting most of the day on Wednesday, I decided to venture out to the Field museum on Thursday. The last time I’d been to the Field museum was after my boot camp graduation from Naval Training Center Great Lakes in 1990, but the museum lacked Sue during my last visit – the largest, most complete, and best preserved Tyrannosaurus rex ever discovered which was unveiled in May 2000. It was well worth the trip and it felt good to walk around the museum for a couple hours.
Today I returned to Northwestern at 9:00am and had my blood work and veins checked. Everything looked good, WBC was 4.1 and platelets were around 200. My blood work will be checked again on Monday morning and I’ll most likely be neutropenic on Monday/Tuesday of next week. To lessen chance of infection, I’ll avoid large crowds and start Ciprofloxacin (antibiotic) and Fluconazole (antifungal) tomorrow.
The primary objective over the next several days is to ensure a sufficient number of stem cells are mobilized from my bone marrow to my peripheral blood using a growth factor called Neupogen. Beginning tomorrow, I’ll administer two shots of Neupogen to myself daily until my stem harvest on 10 February.
Monday, January 31, 2011
Mobilization Day 1
I reported to the Feinberg building at 07:30am and was walked over through a long underground tunnel and admitted to the 15th floor of the Prentice Hospital on the Northwestern campus. The 15th and 16th floor at Prentice is the isolation section where all of Northwestern patients receive chemo for a variety of diseases. I'm in a very nice private room and the staff has been VERY friendly and helpful. Food menu is an a la carte menu with many healthy choices and is served upon request from 6:30am - 9:00pm. The staff also has stashes of food on the 15th floor to satisfy those late night cravings.
When I got to my room the nurse drew some labs and all came back normal. She also conducted a rectal swab to check me for strains of Vancomycin-resistant enterococci bacteria
(http://www.medicinenet.com/vancomycin-resistant_enterococci_vre/article.htm)
which they take special precautions for due to the serious risks involved, especially with other immune compromised patients on this floor.
I started IV hydration just before lunch to prepare for chemo. Nurses had a little trouble finding a good vein, but after 3 sticks we were in business and there has been no discomfort with the IV throughout the day. The nurses tried to get a catheter in me, but had issues making it down to my bladder and after 2 attempts (and me crying like a little baby) they decided to utilize other methods to mitigate chemo effects on my bladder (thank God!).
Chemo was started at 7:00pm and completed 2 hours later. They gave me meds to alleviate nausea and steroids to reduce inflammation before the chemo and I haven't experienced any issues yet. It's expected that I'll be neutropenic (White Blood Cell (WBC) count very low and I'm vulnerable to infection) in 7-9 days, but it's only expected to last 1-2 days and then my WBC should be back up to normal.
Looking out my window it looks as if the blizzard has already started...glad I only have to make it across the street to my hotel tomorrow. I'll probably be discharged in the afternoon sometime. The next several days should be uneventful...I'll post the next update when there are significant changes.
Thanks again for all your prayers and support!!
When I got to my room the nurse drew some labs and all came back normal. She also conducted a rectal swab to check me for strains of Vancomycin-resistant enterococci bacteria
(http://www.medicinenet.com/vancomycin-resistant_enterococci_vre/article.htm)
which they take special precautions for due to the serious risks involved, especially with other immune compromised patients on this floor.
I started IV hydration just before lunch to prepare for chemo. Nurses had a little trouble finding a good vein, but after 3 sticks we were in business and there has been no discomfort with the IV throughout the day. The nurses tried to get a catheter in me, but had issues making it down to my bladder and after 2 attempts (and me crying like a little baby) they decided to utilize other methods to mitigate chemo effects on my bladder (thank God!).
Chemo was started at 7:00pm and completed 2 hours later. They gave me meds to alleviate nausea and steroids to reduce inflammation before the chemo and I haven't experienced any issues yet. It's expected that I'll be neutropenic (White Blood Cell (WBC) count very low and I'm vulnerable to infection) in 7-9 days, but it's only expected to last 1-2 days and then my WBC should be back up to normal.
Looking out my window it looks as if the blizzard has already started...glad I only have to make it across the street to my hotel tomorrow. I'll probably be discharged in the afternoon sometime. The next several days should be uneventful...I'll post the next update when there are significant changes.
Thanks again for all your prayers and support!!
Sunday, January 30, 2011
My Transplant Roadmap
My transplant roadmap is outlined below:
Phase I - Pre Transplant Testing (Nov/Dec 10): — MRIs, CT scans, right heart catherization, blood work, pulmonary function tests, etc. (complete)
Phase II — Mobilization (a.k.a. priming)
31 Jan 11 - Admission to the Feinberg Pavilion at Northwestern Memorial Hospital overnight for chemotherapy.
01 Feb - I'll be discharged from the hospital after 24 hours of fluid hydration. Five days after discharge I'll begin daily shots of neupogen (growth factor) to stimulate my blood cells to move out of my bone marrow and into my blood.
04 Feb - Lab work to check my blood count. My blood counts are expected to be stable until approx 7 days following my moblization chemo.
07 Feb - Lab work to check my blood count.
09 Feb - Lab work to check my blood count.
Phase III — Harvest/Collection (video from Mayo clinic posted as a link that explains process)
10 Feb - My stem cells will be collected from my blood through a process call apheresis. I'll sit in a recliner for approx 4-5 hours until sufficient stem cells are collected.
11 Feb - Backup stem cell collection day as needed.
12 Feb - Return to Hawaii and rest in preparation for conditioning and transplant.
Phase IV — Conditioning/Transplant (video from Mayo clinic posted as a link that explains process for a cancer patient. It's a similar process, but key difference is my protocol is designed to kill my faulty immune system and not destroy cancer cells. There is a lower dose of chemo and no radiation in my conditioning protocol.)
21 Feb - Return to Chicago.
22 Feb - PICC line placement
23 Feb - Admission to the 15th floor of the Prentice Woman's Hospital on the Northwestern Memorial campus for conditioning & transplant. The conditioning regimen consists of 4-5 days of high dose chemotherapy to destroy my immune system. I'll be in a private room with a special filter in the ceiling to helps clean the air. Once chemotherapy is initiated special precautions will be taken to prevent infection.
28 Feb - ?? I'll remain in the hospital and wait for my stem cells to grow (engraft). This process usually takes 1 - 3 weeks after stem cell reinfusion. Prior to being discharged I'll need to meet the following criteria:
Phase I - Pre Transplant Testing (Nov/Dec 10): — MRIs, CT scans, right heart catherization, blood work, pulmonary function tests, etc. (complete)
Phase II — Mobilization (a.k.a. priming)
31 Jan 11 - Admission to the Feinberg Pavilion at Northwestern Memorial Hospital overnight for chemotherapy.
01 Feb - I'll be discharged from the hospital after 24 hours of fluid hydration. Five days after discharge I'll begin daily shots of neupogen (growth factor) to stimulate my blood cells to move out of my bone marrow and into my blood.
04 Feb - Lab work to check my blood count. My blood counts are expected to be stable until approx 7 days following my moblization chemo.
07 Feb - Lab work to check my blood count.
09 Feb - Lab work to check my blood count.
Phase III — Harvest/Collection (video from Mayo clinic posted as a link that explains process)
10 Feb - My stem cells will be collected from my blood through a process call apheresis. I'll sit in a recliner for approx 4-5 hours until sufficient stem cells are collected.
11 Feb - Backup stem cell collection day as needed.
12 Feb - Return to Hawaii and rest in preparation for conditioning and transplant.
Phase IV — Conditioning/Transplant (video from Mayo clinic posted as a link that explains process for a cancer patient. It's a similar process, but key difference is my protocol is designed to kill my faulty immune system and not destroy cancer cells. There is a lower dose of chemo and no radiation in my conditioning protocol.)
21 Feb - Return to Chicago.
22 Feb - PICC line placement
23 Feb - Admission to the 15th floor of the Prentice Woman's Hospital on the Northwestern Memorial campus for conditioning & transplant. The conditioning regimen consists of 4-5 days of high dose chemotherapy to destroy my immune system. I'll be in a private room with a special filter in the ceiling to helps clean the air. Once chemotherapy is initiated special precautions will be taken to prevent infection.
- Fresh flowers or plants are not allowed in my room
- Latex balloons are not allowed as they collect dust (mylar balloons are allowed)
- Fresh fruits and vegetables are not allowed
- Staff and visitors must wash their hands before touching me
- Visitors must wear masks if they have been exposed to colds. No one with a cold or temperature should visit
28 Feb - ?? I'll remain in the hospital and wait for my stem cells to grow (engraft). This process usually takes 1 - 3 weeks after stem cell reinfusion. Prior to being discharged I'll need to meet the following criteria:
- Stable vital signs
- Engraftment (stable blood work)
- Able to eat 3 meals and tolerate fluids
- No signs and symptoms of infection
- Medically stable
Welcome to my blog!
I've created this blog to keep family and friends updated on the status of my autologous hematopoietic stem cell transplant at Northwestern Memorial hospital in Chicago. This blog will also help explain the stem cell process for those auto immune disease patients considering this treatment option in the future.
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