Wednesday, September 23, 2009

Post 10 - Summing Up the XCell Experience

I am writing this summary just a few days after returning from Cologne, Germany and less than a week after undergoing the XCell stem cell therapy procedure. I mention that because right now my overall physical condition is influenced by jet lag and travel stress. A week living in a hotel, eating different foods, walking much more than usual, airport delays, and dragging luggage and a fairly heavy carry-on would have worn me out on my best days. Now combine all of that with my current MSA condition and I’m not feeling particularly well at the moment. Ibuprofen is keeping the headache, stiff neck/shoulders, and back ache at bay. I’m still somewhat fatigued that’s evident in my balance and walking which is a bit worse than before. Today (Wednesday) is a little better than yesterday so I anticipate another week or more of “recovery” will be needed before I can judge if the therapy has had any immediate effect. I’m also prepared for the “long haul” of several months to learn if there’s been a positive difference. Right now, I plan to briefly describe my MSA condition on this blog every 2 weeks.

I can say without hesitation I have absolutely no regrets from undergoing the treatment at XCell. The staff and facility were exceptional. Cologne is a beautiful city with many attractions, super-friendly residents, and excellent restaurants. What I wrote in the introduction to this blog remains true today, “If I do nothing, the result will be nothing.”

Two other mentions: First, if anyone has specific questions about my XCell experience please contact me at the following e-mail address and I’ll be happy to reply. And second, please allow me to wish Fran - my wife, executive assistant, travel coordinator, medical consultant, and chief caregiver, a very Happy Birthday today. There was no way I could have undertaken this procedure without her planning and constant support.

Tuesday, September 15, 2009

Post 09 - In Cologne

Day 8 (Monday) – Back on the Road (Sort Of) After a comfortable night at the Sheraton (breakfast buffet – and last night’s dinner were excellent) we dragged our bags back to the Delta counter and checked in. Our 9 hour flight to the States was scheduled to depart at 10:30am (arrive in Atlanta at 2:15pm with connecting flight to Florida scheduled for 4:15pm). Happily at 10:30 we were “wheels up” and on our way home. It looked like Murphy was done fooling with us. After a long, 3 movie flight we landed in Atlanta in what appeared to be a rainstorm. Apparently Murphy made the crossing faster than us and ordered up a serious storm with heavy rain, strong winds, and major flooding. As we headed down to the concourse for our flight to Florida, Murphy‘s storm caused the entire Atlanta airport – the busiest in the world - to cease operations. As the delay stretched out to over an hour, more and more flights were cancelled. We started to check out the most remote seating areas for what may become our overnight “lodging.” Among all the cancelled flights, our little Florida flight continued to show “Delay”- with a slated departure of 6:15pm. Could we be that fortunate amid a sea of misfortune? I have never been more relieved to see an entire flight crew appear at the gate and head down to the plane. Good to their word Delta had us in the bumpy air 7pm and in Fort Myers at about 9pm. Murphy even showed some pity on us by allowing our rain dampened luggage to arrive on the same flight. Finally, we walked in our front door, decompressed for about an hour and went to sleep (more accurately – went unconscious). All in all a very stressful two days – thank goodness for Ibuprofen Extra Strength).

Random Observation #4 - The German railway system is clean, convenient, and safe. Our ride to and from Dusseldorf was very smooth and scenic. It was especially safe on our trip back to the airport where we noticed a stepped up police presence. Apparently it was due to an increased threat from terrorists.

Day Seven (Sunday) – Murphy’s Law German Style I should have known things were proceeding too smoothly. I don’t know what they call it in Germany, but in the States it’s referred to simply as “Murphy’s Law” which basically means if anything can go wrong – it will go wrong (and usually at the worst possible time). Murphy’s Law struck us on Sunday. All started off well. We checked out of the Hotel Lindner at 4:15am and walked the few blocks to the Cologne railway station where we boarded the 5:51am train to the Dusseldorf airport stop. Everything still ok. We took the Sky Train to the main terminal and checked in at the Delta counter. Next we cleared security (interestingly, they don’t make you take your shoes off but force of habit made me remove them anyway) and passport control. Still no problem – in fact, we commented that in a little while (9:20 am) we’d be on the way home. I believe that’s the comment that must have awakened Mr. Murphy. While waiting at Gate 44 for the announcement to board I noticed activity that just didn’t seem normal. At 9am, Murphy struck. They announced there would be a delay while a slight mechanical problem was attended to. Then the captain took the mike and informed us the problem was electrical. He seemed optimistic about the delay being only a short one. That comment apparently only made Murphy madder. At 11am we all received 10 euro meal vouchers and instructed to not go too far away from the gate. Back at the gate around 2pm, Murphy finished us off. The announcement stated the flight was cancelled for mechanical reasons and we’d have to wait until the next morning for departure. We were given vouchers to the Airport Sheraton which included one night’s lodging, 60 euros toward dinner and other expenses, and a complimentary breakfast. If you must be stranded somewhere, there are worse places than the Sheraton (Murphy missed that one).

Random Observation #3 – An unexpected, sobering experience was our tour of the EL-DE Haus Museum on Saturday morning. The museum housed the Gestapo secret police during the WWII. The tour included the basement cells where political prisoners were housed, interrogated, tortured and, in some cases, murdered. The museum also candidly portrayed the rise and fall of National Socialism and the near total destruction of Cologne

Day Six (Saturday) – Venturing Out Today was sort of an experiment – walking a bit to test my balance and stamina. We started with a half-mile walk to a museum and about two hours viewing the exhibits. Afterward, a similar walk back toward the hotel and a stop for our last German meal and two final Kolsch beers. I’ll admit being a little tired when we reached the hotel. Over did it just a bit - but had to try.

Day Five (Friday) - Taking It Easy Even though I felt pretty well and wanted to go out for awhile, I obeyed the doctor's orders and spent most of the day relaxing in the hotel. Since the order didn't apply to Fran, she took a taxi to one of her "must see" attractions - the Chocolate Museum. She also walked around the Old Town district that abuts the Rhine. When she returned, I had to get outside - it was an absolutely beautiful day - so we walked to a nearby sidewalk restaurant for another hearty German meal and glass of Kolsch. We topped the day off with a cup of Starbucks and some people-watching near the Cathedral.
Physically, a day after the implantation, my only complaint is a stiff lower back. Don't know whether that's due mainly to the procedure or the firm hotel mattress. One other effect I've noticed is the decrease in urinary urgency/frequency - even after drinking plenty of water. It would be great if that continued.

Day Four (Thursday) – Stem Cell Implantation This is different. I’m lying in bed and dictating this message to Fran, my lovely executive assistant. The doctor was very insistent on my lying flat for the rest of the day to avoid a headache and other complications.
My stem cell implantation at the XCell Center took all of twenty minutes. I sat on one side of the exam table; the doctor sat behind me, pulled up my shirt, and had me lean forward on a pillow with my head down. After applying a local anesthesia, he started the lumbar puncture by inserting a needle into the spinal canal just above my waist and withdrew 3.5 ml of fluid. He replaced this fluid by injecting 3.5 ml of the prepared stem cells. Aside from the slight pinprick from the local I felt no pain or other sensation. I half expected to feel these little stem cell wonders rushing off to do their job. Maybe that will come later.
Today’s biggest concern involved the number of available stem cells. The average patient’s bone marrow sample produces approximately 2 million usable stem cells. Mine totaled just 700,000. While that total is admittedly low, the doctor noted that the “vitality” of my stem cells was 10% higher than normal, which should raise their overall effectiveness. He also added that they really don’t know what the optimal number is, so 700,000 may be more than enough.
Right now, eight hours after the procedure, I have some minor discomfort in my back from both Tuesday’s bone marrow extraction and today’s events. I will be very happy if it does not get any worse. That’s it for now; Fran refuses to work overtime. One last thing – We continue to meet interesting people on this journey. As we were preparing to leave the Center, a gentleman from Iowa was finishing up his second procedure at XCell for Parkinson’s. He was so pleased with the results of the first treatment last year that he decided to undergo a second round. It’s very heartening to hear these positive experiences. Good luck, Ted!

Random Observation #2 - Finding a cup of decaf coffee in Cologne is like trying to find snow in Florida. Every shop we stopped and asked in brought the same confused look. The local coffee is good and strong but not something I want to drink in the evening and then try to fall asleep.

Day Three (Wednesday) – Sightseeing Bus tour of Cologne and a little bit of walking around this beautiful city – didn’t want to wear myself out. Another hearty German meal and a glass of Kolsch.

Day Two (Tuesday) – 1st Visit to XCell Today can certainly be described as “interesting.” After a short taxi ride to the east side of the Rhine, Fran & I arrived at the XCell Center, which is on the second floor of the Eduardus Hospital complex. The Center is spotless and staffed by very professional and friendly personnel. After completing the usual registration paperwork, I had a few vials of blood drawn to compare with the report I sent from the States a few weeks ago – the one that drew the Clinic doctor’s hesitant comments. I wish I knew the results to see if all the red meat and iron supplements have made a difference.
Next came an informational session with Dr. Johns who will perform both stages of my treatment. He thoroughly described all aspects of the procedure and asked many pertinent questions. I was especially happy to hear his opinion that stem cell therapy appears more effective during the early stages of a disease like MSA rather than waiting until it has reached a more advanced level. I’m very pleased and confident with Dr. Johns as my treating physician.
After the conference it was time for Dr. Johns to perform the bone marrow withdrawal. With the exception of a slight pinch from the anesthetic needle, the procedure was painless. The withdrawal of 20 vials of marrow took about 15 minutes. These vials are now on their way to a lab in London for stem cell processing and return to XCell in time for Thursday’s implantation.
The entire process today took about two hours after which we treated ourselves to a typical German meal and my first Kolsch beer. After a day off tomorrow, it’s back to XCell on Thursday for the implantation. I’ll post another entry when that’s over. That’s one step down and one to go.

Random Observation #1 - The people of Cologne really are incredibly friendly and helpful. All you have to is stop on the sidewalk and open up a map and you’re immediately surrounded by a bunch of “Kolners” who want to help you find your way.

Day One (Sunday - Monday) - Travel to Cologne It’s about midnight Monday night here in Germany and I’m wide awake in our Cologne hotel room with a major case of jet lag. So instead of staring at the ceiling, I thought I’d take a few minutes to cover how the trip to the XCell Center has gone so far.
The travel on Delta was smooth, uneventful, and long – a total of about 10 hours in the air, with little sleep. Dusseldorf airport is relatively small and very manageable – we were through passport control very quickly. Clear signage (in German & English) led us to the Sky Train, which took us to the nearby railway station. I don’t know if Fran and I looked particularly needy or we landed in Germany on “Be Nice to Bewildered Americans Day” but we kept encountering locals who wanted to make sure we found our way. They helped us buy our train tickets (38 euros for 2 round trips), took us to the right track, and even gave us a hand with our luggage. When we got off at the Cologne station, one incredibly helpful lady insisted on walking us the few blocks to our hotel. Turns out her West Berlin parents were fed by the American airlift after the war.
After checking into the Hotel Lindner (a very nice place near to the town center) we crashed for a few hours, then took a short walk back (in the rain) to the railway station’s underground shopping area where we were forced to have some great pastries and much needed coffee. Brought two sandwiches back to the hotel for a light dinner, watched a little TV, and couldn’t keep our eyes open much past 7pm which for me turned out to be a long nap because here I am awake at midnight.
Seriously, I think one of the reasons people were so willing to help today was because the travel tired me more than expected and I was having a rough time walking and managing the luggage. Even though we only had one modest-sized suitcase each, I was finding walking progressively more difficult.
Well, tomorrow is bone marrow extraction day at XCell so I should try to get some sleep. I’ll pick up the blog when we get back to the hotel. Stay tuned.

Friday, September 11, 2009

Post #8 - At Last!

Finally – the date that seemed so far away is just about here. The suitcases are packed (had to dig out long sleeve shirts and regular trousers which don’t get much use here in SW Florida where the daily temp still reaches 90). The travel documents have been double checked and the flight and hotel reservations have been confirmed. Earlier this week we went to the local bank to pick up the Euros to pay the Clinic. My hand is still sore from signing my name so many times and filling in the name of the XCell Center on over 40 travelers cheques. On the date we purchased the cheques, one euro cost $1.46 USD.

We leave Fort Myers for Atlanta at about noon on Sunday. The flight to Germany leaves Atlanta at 4:25pm and arrives in Dusseldorf at 7:30am on Monday morning – 9 hours in the air! I’ll be wearing compression knee-high socks to help my blood pressure stay steady and plan to drink plenty of water along with walking around or at least standing up when possible. After a brief train ride we should arrive in Cologne no later than 10am. The Lindner Hotel, which is just a few blocks from the railway station, has graciously offered us an early check-in at no cost. After such a long and probably tiring trip, it’s a big relief to learn we can get into our room early.

The bone marrow extraction is scheduled for noon on Tuesday. If all goes well, we plan to do some sightseeing on Tuesday afternoon and all day Wednesday while XCell isolates the stem cells from the marrow. With all the red meat and iron-rich foods and supplements Fran has been feeding me over these past few weeks, I’m certain my stem cells are charged up and raring to go. It’s then back to XCell on Thursday at 11am for the stem cell implantation via lumbar puncture. After a day or so of rest in the hotel we hope to do some more sightseeing on Saturday before heading home on Sunday morning

As the trip to Cologne and XCell draws nearer, the apprehension grows as well. Is the outcome going to be worth the expense? What is the actual procedure and recovery going to be like? Are my expectations too high? How long do I wait for some sign of progress? For those of you who decide to undergo a stem cell implantation procedure in the future – either at XCell or some other clinic around the world - be prepared for an emotional roller coaster ride. I suppose it’s just human nature.

Finally, I’m taking a laptop along on the trip and hope to offer some random thoughts to those of you who have viewed this blog over 1200 times. Thanks again for all your support.