Today was an exciting day. At approximately 8:15am, I went to the IPOP to have blood drawn and was given IV fluids (due to an increased heart rate). Then Dr. Brodsky came by to see me to check how I was doing, watch me walk and check my balance. He gave me a big hug, too. I like the way he seemed so proud of me for finishing.
Next Marilyn and I went to the lab where my central line was removed. The removal was quite different from the placement, because I was awake the whole time (with 2 numbing injections). The PA's who removed my line were so comforting and wonderful, so it only hurt while the 2 needles for numbing were used. During the process, I agreed to have them cut enough to remove all of the line parts - to leave nothing behind. I didn't want the piece that held the catheter in place left in my body.
I was told that I could shower and change the bandage the next day. After a quick lunch, Marilyn and I went to the Outpatient Center to see Dr. Kerr. Dr. Edward Hammond stopped by (since he has been helping me from day one). Marilyn took our picture together and he gave me a list of what blood tests to have done each month until my first follow up appointment 3 months from nowand a proud hug. Also, Dr. Kerr came by to answer questions about my medications and the HiCy recovery process. He said if I had any questions or concerns after returning home that I should feel free to email him or call him. It feels great knowing that he will continue to follow me along and be there for me for whatever I need. He gave me a big hug and was happy to let Marilyn take our picture together. I can't imagine having any better doctors for this than Drs. Kerr and Brodsky. They are the absolute best in every way.
I'm so happy about going home to see my family and my dog, Teddy. Jessica is changing her plans after school tomorrow, just to be with me! I know my being away has been hard on everyone, especially Jess. During one of her weekend visits to Baltimore when she saw how much hair I had lost, she cried because I think she felt so sorry for me (since the hair loss made me look so ill). For now, I plan to always wear a hat or a wig so I look healthier, until the hair grows back.
Friday, June 15, 2007
Tuesday, June 12, 2007
June 12, 2007
I am scheduled to have my central line removed on Wednesday, June 13th. I've been in this protocol for three weeks but it feels more like 3 years.
Wednesday at 8 am I'm supposed to report to the IPOP for pre-op tests. Then at 10 am, I am scheduled for the central line to be removed. At 12 noon, I'm scheduled to see Dr. Kerr and hopefully Dr. Hammond too. Well need to go over future plans for follow-up as well as medication adjustments. Marilyn and I are scheduled to fly back together Wednesday evening. When I return home, Doctor"s orders are for at least one month for recuperation (lots of rest) in order to get stronger.
I was given permission to have my first outing away from the hotel and hospital tonight. So Marilyn and I went to Phillips on the inner harbor outdoors. It felt surreal, almost like a dream, to be acting like a "normal" person in the real world.
I feel like I've been away forever.
Wednesday at 8 am I'm supposed to report to the IPOP for pre-op tests. Then at 10 am, I am scheduled for the central line to be removed. At 12 noon, I'm scheduled to see Dr. Kerr and hopefully Dr. Hammond too. Well need to go over future plans for follow-up as well as medication adjustments. Marilyn and I are scheduled to fly back together Wednesday evening. When I return home, Doctor"s orders are for at least one month for recuperation (lots of rest) in order to get stronger.
I was given permission to have my first outing away from the hotel and hospital tonight. So Marilyn and I went to Phillips on the inner harbor outdoors. It felt surreal, almost like a dream, to be acting like a "normal" person in the real world.
I feel like I've been away forever.
June 11, 2007
My white blood cell count, platelets, h/h are in the normal range! Dr. Brodsky came by the IPOP to see me to say that I was all set to plan for a discharge from the protocol. Through a waterfall of tears, I thanked him for everything he's done for me. I could barely get the words out (I was so emotional) but I wanted him to know how grateful I was to have had him put me through the protocol. Through the tears, I tried to say that I couldn't possibly thank him enough for giving me new hope for a different future than I was heading towards before this treatment.
Right after he left the IPOP, Kathy (the woman who went through the protocall three years ago) called to check in. Again, she was so inspiring and reassuring. It was so encouraging to hear how much our cases/symptoms were similar before the protocol and how wonderfully she's doing now. Kathy said to check in with her after I get into the recuperating phase at home.
Right after he left the IPOP, Kathy (the woman who went through the protocall three years ago) called to check in. Again, she was so inspiring and reassuring. It was so encouraging to hear how much our cases/symptoms were similar before the protocol and how wonderfully she's doing now. Kathy said to check in with her after I get into the recuperating phase at home.
Saturday, June 9, 2007
June 9, 2007
I spent the morning at the hotel with Greg and Jess enjoying quiet time with my family. Then I went back to the IPOP Center and felt like I as in such good hands again. Finally, it was back to people who understand Dr. Brodsky's protocol. I'm starting to feel stronger and more coordinated as my new immune system starts to develop. Today, my white blood cell count was 1850 (normal range is 4500 - 11,000) up from 120 on Thursday evening. Of course, that's up from around zero for a week (during the planned immune system shutdown). FYI (during a casual hallway meeting, Dr. Brodsky said last Wednesday that my white blood cell count would ("begin to reboot" and) go above zero after seven injections, then shoot up quickly after that. After exactly seven injections, (as he predicted) the white blood cell count began to revive. Also, I'd call my wbc count multiplying by over 15 times in 2 days "shooting up quickly! I continue to be impressed by his incredible knowledge and would recommend him and his protocol to anyone else who fits the criteria. Also, I was happy to hear the HiCy Revimmune Protocol seems to be expanding at Johns Hopkins. I hope that this is a sign that the Revimmune product will be made available to MS patients across the country as soon as possible. There is so much potential to restore the hope and lives of so many people who have suffered from MS as I have.
June 8, 2007
I was finally set free after 6 nights of what seemed like a prison sentence. At 6 am, my final temperature reading was normal, so after 36 hours of normal readings the protocol allowed my release. I couldn't go back to sleep since I was so excited about leaving the hospital, so I started getting ready to go. It took until after 1 pm for the discharge papers and prescriptions to be written, even though the intern responsible for the paperwork was on the floor by 8 am. Obviously, I wasn't a priority. Luckily, Joanne came by at 9 am to keep me company while endlessly waiting. A few tough lessons learned during my hospitalization were that the hospital (4B) is staffed completely differently on nights and weekends (when I was admitted). Evenings seem like a dangerously inadequately staffed time where the experienced doctors have gone home and the newer doctors are left in charge of many areas, some of which they have little experience in. I felt like the doctors working on the weekends (a well as the evenings) knew less about the HiCy protocol than I did. The nurses on the night shift and on weekends did not specialize in IPOP or HiCy protocols, so the care was completely different than on weekdays. An example of a mistake made by people not familiar with the protocol was giving me magnesium citrate shortly after admission last Saturday. It was a treatment used to prep for a colonoscopy to cleanout the intestines. I was not scheduled for a colonoscopy. Had the weekend staff been aware that the high doses of antibiotics would have a similar effect, they might not have given me the unnecessary treatment which caused a week of major stomach aches, intestinal cramps and diarrhea. The bottom line is be as aware as you can about what you are being hospitalized for and have a family member or friend visit regularly to keep an eye on things.
Thursday, June 7, 2007
June 7, 2008 - Thursday
Finally started the day with 98.6f/37c temp - aiming for staying under 38c for 24+ hours (knock on wood) so that I can be discharged back to the Tremont Plaza.
While taking a long walk with the charge nurse at a very fast pace for me I saw Dr. Brodsky. I was so happy to see him and he, as usual, provided very encouraging feedback on my progress.
While having lunch with Joanne, I practically fell asleep in my turkey sandwich. I was wondering if it was the walk, the medication or if possibily a fever returning. But when they took vitals again, Nicole reassured me that my body was going through so much dramatic change as a result of the HiCy and that I was just exhausted. It was time to take a nap.
At 5pm, I was woken up from a very nice nap with the news of a room-change. I was told that a patient on the floor needed a "clean" room(room with double door protection) - which on this floor, the only room was mine - so I had to move 5 doors down to a different room. Sounds easy enough, except when you are exhausted and not feeling like packing for a move. The nurses were quite helpful in getting all my things together and moving my entire room (including my furniture) into the new room. Let me tell you about this new room - I wish I had a room that had two windows the way this one had! Even though this room is twice as big as the other room and the bathroom is big and it's bright with the two windows - it doesn't hold a CANDLE to the the super-comfortable bed and suite at the Tremont Plaza.
While taking a long walk with the charge nurse at a very fast pace for me I saw Dr. Brodsky. I was so happy to see him and he, as usual, provided very encouraging feedback on my progress.
While having lunch with Joanne, I practically fell asleep in my turkey sandwich. I was wondering if it was the walk, the medication or if possibily a fever returning. But when they took vitals again, Nicole reassured me that my body was going through so much dramatic change as a result of the HiCy and that I was just exhausted. It was time to take a nap.
At 5pm, I was woken up from a very nice nap with the news of a room-change. I was told that a patient on the floor needed a "clean" room(room with double door protection) - which on this floor, the only room was mine - so I had to move 5 doors down to a different room. Sounds easy enough, except when you are exhausted and not feeling like packing for a move. The nurses were quite helpful in getting all my things together and moving my entire room (including my furniture) into the new room. Let me tell you about this new room - I wish I had a room that had two windows the way this one had! Even though this room is twice as big as the other room and the bathroom is big and it's bright with the two windows - it doesn't hold a CANDLE to the the super-comfortable bed and suite at the Tremont Plaza.
Wednesday, June 6, 2007
Wednesday - June 6, 2007
My new antifungal medication was added two days ago since I still have a fever of unknown origin - the doctors told me that this drug would cause bizarre side effects.
Never before in my life has a medication prescribed by a doctor resulted in hallucinations where I am in a horror movie with every villan from every slasher movie. The images are incredibly vivid and flash at high speeds. They are accompanied by lightning bolts on the underside of my eyelids. When I turn on the lights and open my eyes I see the room in different colors. The doctor said I would see little green men - so far I haven't seen them. They would be a lot cuter than what I have encountered.
At this point, the doctors are calling my fever of unknown origin a neutropenic fever which can result from having no immune system. Their decision is not conclusive because they keep looking for a reason for the fever. I was told that they may not find a reason and that the fevers may ultimately resolve themselves as my immune system kicks back in again.
For the past three days I have had the most wonderful nurse on the day shift - her name is Nicole. She has been involved with the HiCy Program and with the IPOP follow-up clinic for four years. So her words of wisdom and incredible knowledge of the subject are so comforting at this time.
On a lighter note, while Joanne and Nicole were in the room with me today, I got an interesting phone call on the hospital line. The man was looking for his friend Bernard Oxman and I told him that he had the wrong room. He kept insisting that he dialed the right number and that Bernard was in the room. I suggested that he call the hospital operator to get the correct number but he kept saying that he knew he had Bernard's room. I told him that I was sure that after 4 days of being in this very small hospital room -that Bernard was not here. The three of us had a really good laugh over it. A nice way to break up the intensity of the day.
Never before in my life has a medication prescribed by a doctor resulted in hallucinations where I am in a horror movie with every villan from every slasher movie. The images are incredibly vivid and flash at high speeds. They are accompanied by lightning bolts on the underside of my eyelids. When I turn on the lights and open my eyes I see the room in different colors. The doctor said I would see little green men - so far I haven't seen them. They would be a lot cuter than what I have encountered.
At this point, the doctors are calling my fever of unknown origin a neutropenic fever which can result from having no immune system. Their decision is not conclusive because they keep looking for a reason for the fever. I was told that they may not find a reason and that the fevers may ultimately resolve themselves as my immune system kicks back in again.
For the past three days I have had the most wonderful nurse on the day shift - her name is Nicole. She has been involved with the HiCy Program and with the IPOP follow-up clinic for four years. So her words of wisdom and incredible knowledge of the subject are so comforting at this time.
On a lighter note, while Joanne and Nicole were in the room with me today, I got an interesting phone call on the hospital line. The man was looking for his friend Bernard Oxman and I told him that he had the wrong room. He kept insisting that he dialed the right number and that Bernard was in the room. I suggested that he call the hospital operator to get the correct number but he kept saying that he knew he had Bernard's room. I told him that I was sure that after 4 days of being in this very small hospital room -that Bernard was not here. The three of us had a really good laugh over it. A nice way to break up the intensity of the day.
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