Monday, March 24, 2008

March 24,2008

NO CHEMO INFUSION TOMORROW! The doctor just called and after conferring with Ron's other doctors they have decided to not do another infusion and instead start him on the oral chemo medication. They will also be trying to schedule the spinal puncture this week. Needless to say, Ron is THRILLED to not have to go thru another infusion tomorrow! I will keep you posted!

Sunday, March 23, 2008

Pictures From our New Mexico Vacation

Wanted to share some pitures of us

March 23,2008

I wanted to post a little update for everyone. Ron had a MRI/MRA done on March 11th. The doctor called that afternoon and told us that the radiologist had located 2 new tiny strokes, less than 4mm a piece in size. The doctor was concerned but not overly so. We hoped Ron was finished IV chemo but the doctor has ordered at least one more, which he will receive on Tuesday March 25. The doctor has also requested we get a second opinion from another Rheumtologist. His doctor has never had a patient with this disease and she wants another set of eyes to look at his case. The doctor wanted us to go to the Mayo Clinic in Cleveland to consult with the experts on this condition. However we have decided to go to a local Rheumo first and then if they still feel it necessary, we will go to Cleveland. The doctor also wants us to make a decision about Ron having a brain biopsy. Before that though, the doctor is conferring with Ron's neurologist about getting another spinal puncture done to see how his spinal fluid looks. We will be meeting the new doctor and have the spinal puncture done sometime in the next few weeks. Ron will also have another MRI/MRA done towards the end of April. Ron has been feeling pretty good and is improving each day. He was hoping to go back to work at the beginning of April, but now we are not sure when he will be able to.
In happier news, we just returned from a week long vacation in Ruidoso, New Mexico. Ron's mom has a house there. It was Ron, his mom, his brother and I. We had a blast and actually had the chance to relax and enjoy ourselves. We had planned the trip to celebrate the end of chemo but it was a wonderful trip regardless. I will write again soon. Thank you so much to everyone for your positive thoughts and prayers!

Tuesday, March 4, 2008

Copy of my private blog postings

Entry for August 13, 2007
I really don't even know where to begin so I will start when Ron, my husband, first became ill. It all started around July 29th. We both came down with sinus and flu symptoms. Because of my jacked up immune systems it takes me FOREVER to get over even a simple illness so I was not surprised that Ron's symptoms were better sooner than mine, however he complained of a persistent headache that he could not shake. He was awakened from a dead sleep on July 31st, violently ill. He was ashen and looked horrible. He took some Advil and Nyquil and laid back down. When he got up at 2pm for work he felt marginally better but by the time he got to work his headache was back with a vengeance. This headache was bad enough to make him cry in pain when he tried to stand or even take a shower. He made an appointment with the doctor for Friday the 3rd. I was still feeling pretty crappy too so we made me an appointment with the same PA at the same time. This guy is a complete quack apparently. He barely listened to either of us and we were in and out in less than 10 mins. He gave us both levaquin as an antibiotic and gave Ron some headache medicine. He did not even let Ron explain how severe the headache was. If the quack had listened he would have prevented a lot of this and possibly prevented my husband from having the first stroke but more on that in a bit. The headache medicine that was prescribed did not even TOUCH the headache and on Sunday the 5th he started having difficulty speaking with slurred speech. Ron shrugged it off thinking his headache was just that bad. Tuesday the 7th we went to my parents for my nephew's birthday and as soon as we arrived Ron went & laid down in my parent’s bed, unable to eat or even interact with anyone because of the pain. He got up at about 8pm telling me to take him to the ER. We check in to the hospital at 850pm. All the doctors are thinking it is a bad migraine so they originally did a CAT scan to rule out any brain bleeding or problems in that area. We waited for hours and the CAT scan came back negative. The doctor then did a spinal tap. Within 30 mins of the spinal tap they had the results and were pumping him full of antibiotics. The spinal tap indicated meningitis. The levaquin the quack had put him on may have altered the results so they started treating him for bacterial meningitis as a precaution (the really bad, contagious form) even though his numbers were in the range for viral. They tell us they are going to admit him into isolation until they can rule out bacterial. The order to admit him came at 5am on the 8th. They finally got him into an isolation room at 3pm. Let me tell you, sleeping is difficult in a chair and even more so when I could not stay awake any longer so I laid on the ER room floor next to Ron's bed.
So they get him up to the room and we meet his attending doctor. She is wonderful and listens to all of my questions/concerns. She tells us that the slurred speech is concerning to her, as it is not a normal symptom of meningitis. She orders an MRI and within a couple hours she comes in to tell us that the radiologist has found some abnormalities on his scan. The neurologist comes in the next morning to tell us that Ron has had 5 mini strokes that they can clearly see on his scan. Next step is rule out all other causes of stroke to confirm it was the meningitis. Apparently, when you combine the swelling of the brain stem caused by the meningitis with the increase in his blood pressure caused by pain, the brain has a little stroke. The only lasting effect so far is some weakness on his left side (his strokes were all on the right side of his brain which controls the left side of his body) the weakness was very profound on Thursday and Friday, to the point he could not sit or stand. The weakness is exceptionally better now. He can sit and walk to the bathroom with assistance. He has shown no more trouble with his speech since the weekend either.
So now we wait. They have drawn lots of blood for cultures and done several tests, everything coming back good so far. They inserted a PIC line yesterday because they had trouble reinserting his IV and they had been having trouble drawing blood. For those who don't know what that is, there is a port on his bicep with an artificial vein that runs directly to the heart. They can give meds and draw blood from the same place. Unfortunately the only thing they can do for viral meningitis is treat his pain. They are continuing the antibiotics just in case he had some bacterial stuff too. They are keeping him here until his pain can be managed with oral medications. Right now he is getting morphine every 3 hours and toradol every 6. The pain doesn't come back as bad but he is still saying it’s a 7 or 8 on a 10 scale. We will more than likely be here until at least Wednesday.
Now to me. This has been very emotionally draining. Ron is my world and my best friend. We were just getting back in sync and bam, I almost lose him. My brain never allowed the thoughts of him not coming home to process which I suppose is a good thing. It is so difficult to see my big strong man so sick and in so much pain. When they told us about the strokes, he was scared. Luckily they have kept him medicated enough that he hasn't really been able to dwell on it. All I could think was that it was going to be alright, it had to be, I could not accept anything else.
I want to thank everyone for all the positive thoughts and prayers. We both needed support and our friends came through, more than I ever could have imagined. I would not have been able to stay strong with out the love & support of our family and friends. Again, thank you so very much from both of us, for everything!

Entry for August 15, 2007
Wanted to give you the latest on Ron. They did a repeat MRI today and he has had no more strokes. The neurologist allowed me to look at the MRI pictures so I was able to see where the strokes were. 4 were on the right side and one was on the left. Most of them were small, with the largest being just a little larger than a penny. The strokes on his right side followed a long the same path, which is consistent with the viral meningitis. The weakness was a result of the largest stroke however he has recovered most of the function back on the left side. They tried to do a repeat spinal tap but the doctor was unable to get the needle in position to retrieve the fluid. They will try again in the morning however this time they will be watching the needle go in thru X-Ray. The attempt tonight caused him quite a great deal of pain. As long as the spinal tap shows that his white blood count is lower, then they will continue treating his pain and waiting for the meningitis to leave. If the number isn't down, then they will have to treat him another way. His headache is still pretty severe when the morphine wears off so they are going to try a different combination of medication tomorrow. There is still a risk of stroke as long as he has the meningitis however they are keeping him medicated which keeps his blood pressure down as well as his brain activity. That is really the only thing they can do to prevent a stroke, that along with aspirin therapy. Right now it looks like we will be here until at least Monday.

Entry for August 16, 2007
Just a small update... The spinal tap showed that the white blood cell count is down from 1250 to 23 so that is wonderful news. Now we wait for the pain to get better. He has to be able to manage the pain with oral medication before he can go home and he isn't close to that quite yet. They started him on 10mg of Lortab today and he actually rested quite well. Looks like we will be here until Monday.
Thank ya'll so much for all the positive thoughts and prayers.

Entry for August 20, 2007
So I needed a little blog therapy and I also wanted to give everyone an update. We are home! Ron was released yesterday morning from the hospital. The only effects from the stroke are the personality changes which are improving each day and he now must take blood pressure medication & aspirin each day. He has been sleeping most of the time since we came home, but that is good because he did not rest well in the hospital.
I had a small breakdown the night before he was released. There were lots of things behind it, mostly due to the fact I had not dealt with all the things going on and they hit me all at once. This whole experience has been a HUGE eye opening experience for me and Ron both. I never really realized how much I depended on him until he was unable to hold me up. I never truly understood what people meant when they tell you to never take things for granted. He honestly is the center of my universe. I could not go on without him and that realization hit me so hard after everything we have gone thru this past year. I just want my husband back and to find some version of normal again. I know that getting fired was part of a master plan because my unemployed status allowed me to spend every day at the hospital with Ron, instead of worrying about him while trying to work
I am going to try to get some sleep. I am finding it difficult to sleep; I just lay here and watch him. I am sure I will blog more soon.

Entry for August 23, 2007
Hopefully writing some of this mess down will help.
I guess you could say Ron is healing, although I don't really see it. He sleeps a lot and doesn't eat. When he is awake, he is a different person. I guess I never realized thru all of this that I may not get my husband back. I force myself not to cry in front of him. This is all more than I am equipped to handle. I love that man so freaking much but I can't do anything to take the pain away. The medicine doesn't make it go away totally, just makes it bearable. The messed up thing is, none of the doctors are able to give us an idea of when the headaches will stop. I think he is starting to get depressed and addicted to the medication. We go to the doctor tomorrow so I guess we will see what she says. He shouldn't be hurting like this anymore. He should be able to eat and function by now for craps sake. I just want my life back. I want him to not hurt anymore. I want this whole thing to be over with. I just feel so overwhelmed. Our friends and family have been so wonderful thru all of this but I am not good enough at explaining myself so that I can get some help with these feelings I am having. Ok, that’s all I can stop crying long enough to type for now.

Entry for August 26, 2007
First, I want to thank all of our family and friends who have held me up through this entire ordeal.
For those I have not contacted, Ron is back in the hospital. I will start the story from the beginning. When Ron was discharged Sunday, the 19th, he was told he could go back to work Tuesday the 28th and to follow up with his primary care doctor before then. So, Monday I made an appointment for Friday, the 24th. He hadn't really been improving since we had been home and I was beginning to think there was more to his behavior than the pain medication. He was able to walk to the car to go to the doctor with a small amount of assistance. By the time we got to the doctor, around an hour later, he was leaning on me heavily and had poor balance/coordination. His speech had also begun to slur, like his tongue was thick. The doctor talked with us for less than 10 mins before she was ushering us out the back door of her office, no checking out, and no paying of the co pay. She knows Ron went thru paramedic school and she knows I have enough medical knowledge to keep him safe, so into the car, back to the ER we go. She knew he would be safe with me and didn't want us to have to wait for an ambulance. The hospital our doctor practices out of could not handle his case, as they have no weekend neuro and no infectious disease doctors at all.
So we get to the ER and unfortunately they are not taking me and my lack of medical degree seriously. 3 doctors tried explaining they thought is was all the narcotics he had been on. I knew better, I know my husband. They decide to admit him as a precaution, although they believe it is the drugs. They do a spinal tap and take another CT scan. The white blood cell count comes back higher than when we were discharged, 5 days prior. Now they are taking us a little more seriously but not by much. This go round he gets a new infectious disease doctor who comes in just prior to us being transferred to a room, after a 9 hour wait in the ER. He looks me in the eyes and asks me, "Mrs. Hopson, do you think it’s the drugs doing this to him? You know him better than any of us or any clinical finding we have at this point." I told him that I most defiantly did not think it was the drugs and I was gravely concerned he was having another stroke. After we are moved upstairs, the infectious disease doctor comes in and tells me he is not concerned about the meningitis at this point, his primary concern is to find the reason a 28 year old healthy man had suffered 5 strokes during our previous hospital stay. I am very relieved at this point, because FINALLY someone is taking this seriously.
Saturday morning, the 25th, during his 6am neuro check, I advise the nurse that his speech is much much worse. Luckily, this nurse was his nurse the first time we were here, and she remembered his decline from the first stroke. They do an emergency CT scan to confirm there is no bleeding and then less than 5 mins after that they take him in for a MRI. The neurologist comes in about an hour later and tells us that they have discovered 4 new strokes in my husband’s brain. Around 11am my husband started to decline. He became difficult to arouse and his speech, if he spoke at all, was undistinguishable. Ron's mom arrived around that time and while she continued to try to get him to respond, I found a nurse and advised her his condition was worsening and I needed the neurologist. The neurologist comes in within mins and after attempting to stimulate him, he orders us to the ICU. Most of the rest of Saturday he was only responding to painful stimuli.
At this point, Ron has 5 doctors on his case trying to figure out what is trying to kill him. They all concur that at this point, after reviewing all of his tests, labs and numbers, the most likely scenario is vasculitis caused by the meningitis. The infectious disease doctor tells me that in his long career he has only seen one other case of vasculitis caused by meningitis. After advising us of all the options, they put Ron on high dose IV steroids, because if it is vasculitis, we will see improvement within 24 to 48 hours. They also give him 2 new antibiotics to cover an infectious cause.
They started the steroids around 4pm Saturday afternoon. The infectious disease doctor persuaded the nurses to allow me to stay with him over night, but she insisted they had no accommodations, leaving my options an uncomfortable chair or the floor. My back couldn't handle the chair so I made a pallet on the floor. I was awakened at 730am by the sounds of Ron's voice, awake and answering questions.
The plan is to do 3 days of IV steroids then go to a lower dose chemotherapy steroid pill that is easier for the body to tolerate. They did an EEG this morning to check his brain waves and will do an angiogram in the morning, to confirm the diagnosis of vasculitis of the brain and to see how many of the blood vessels are affected. As long as he continues to improve, he will hopefully be moved to a regular room and the catheter removed tomorrow.
I am just so very relieved that we have an answer and he is improving. My husband is coming back to me. Yesterday was a very very overwhelming day for me. I never imagined having to make some of the decisions I was required to make. I was so afraid that I was losing him and they weren't going to be able to fix him.
So please continue to keep us in your thoughts and prayers if you can, they are obviously working. The ICU is a very scary place and I have no intention of EVER being here again. I will update everyone tomorrow. Thank you again, for everything!

Entry for August 27, 2007

We finally have a diagnosis. Central Nervous System Vasculitis. It is extremely rare but treatable and recoverable. Ron had an angiogram this afternoon that according to the Radiologist, confirmed the vasculitis. The fact that the vasculitis was so obvious on the angiogram reduces the chance he will need to have a brain biopsy. The neurologists have told us all along that none of his strokes have been in vital areas that will affect his quality of life, which is a wonderful thing. He will probably need some physical and maybe speech therapy. His speech and comprehension are better today. I will write again later when I have more information. Thank you again for all of your positive thoughts and prayers!

Entry for August 30, 2007

Ron is slowly but surely getting better. They are planning to transfer him to inpatient rehab either tomorrow or Saturday. His right side is still very weak and his balance is way off. The doctor has ordered 7 - 10 days of inpatient rehab before he is discharged home. They will not begin the chemo treatment until after he has completed the rehab. The doctor says the rehab will help his strength and that in turn will help him tolerate the chemo. He will be doing at least 6 months of chemo. He will come in to the hospital, once a month, for IV chemo treatment. Once his strength returns he will be able to go back to work, which believe it or not, he is really looking forward to. He is ready to feel "normal" again. We have decided against the brain biopsy. The treatment is the same regardless of the result of the biopsy, so we couldn't justify putting his body thru that. Part of me thinks the doctors were so gung ho for the biopsy to study him, since they have never encountered a patient with this condition. My husband is no "case study". The steroids really do a number on his emotions, so keeping him positive has been more difficult this time. At least the headache is gone so he is not in pain. I will update everyone which rehab facility he gets moved to. Thank you all so much for caring about him. I will never be able to describe my gratitude for all of the support!

Entry for September 04, 2007
I apologize for not getting an update out sooner but honestly, I am worn out. I spend the day at the rehab hospital with Ron and by the time I get home, I do little more online then check my email. It is really hard not being with him at night. The first couple of nights I completely freaked but it is better now. I just remind myself that each day is a day closer to him coming home.
Ron is doing so well!! The inpatient rehab is working wonders. He has been there since Friday, the 31st. Each day he is getting stronger and stronger. His personality is back too. I did not realize how much I had missed him. It is so nice to be able to laugh and joke with him again. He will be in the rehab hospital until Friday or Monday, then he gets his first IV chemo treatment on Thursday the 13th. He may possibly be able to go back to work by the end of the month.
The hospital he is in is so nice. It is BRAND new and he is one of only 7 or 8 patients. They have a CHEF!! The food is wonderful but I have to keep reminding Ron not to get used to the good food, haha.
Thanks again to everyone for all the positive thoughts and prayers. I will write again soon!

Entry for September 18, 2007
Update on Ron,Long overdue
First I must apologize for not getting an update out sooner. Ron was released from the inpatient rehab and came home on September 8th, so I have been enjoying my time with him. He excelled in therapy and surpassed everyone's expectations. He is close to 100% now, still having some balance issues but otherwise doing well considering what he has been thru. I am writing this blog from the hospital. No worries, we are here for his first round of chemo. We were SUPPOSED to be in by 8 am and out by 5 pm. Well, of course things never go as planned. The room wasn't even ready until 4pm and he has to be observed for at least 12 hours. So far he has tolerated the chemo well. No side effects as of yet. The rheumatologist came in to see us and told us his bloodwork from Wednesday was good, his liver numbers are improving, almost normal. His double vision is almost completely gone as well. He is ready to be able to drive...he hates riding in my passenger seat! lol
I am just glad to have him home. It has been so nice, waking up and him being in bed beside me. Our fur kids are pretty happy to have him home as well. Thanks again so much for all the love, positive thoughts and prayers! We could never put in to words how much the support has meant!

Entry for October 14, 2007
So here we are again, back in the hospital. This recent episode started on October 6th. He woke up having some problems with speech and in my heart I knew something was wrong. The problem is that Ron does not remember his decline either of the last 2 times so he passed the events of the past week of as nothing. I knew better however since I had to watch him nearly die the last time. He absolutely refused to go to the hospital, even after several more episodes. His doctor even tried to talk him into coming to the ER. I finally convinced him that he should at least go see the doctor. We had a doctor's appointment Thursday morning and she scheduled an MRI right after the appointment. He was ok at the doctor's appointment, just a little slower than normal with his walking and his speech. The doctor had ordered a urinalysis to check for any infection because Ron was scheduled for chemo the next day (Friday). We had a little time to kill before the MRI so we went to the lab to do the urinalysis; the lab is next door to the hospital.
The lab was busy so we had to wait a bit, maybe 15 - 20 mins. By the time they called his name, he had declined to the point he was unable to pull his wallet out of his back pocket and was confused to the point he couldn't answer me. He tried to give the urine sample but was unable. He was having increased difficulty with walking so I told him we were going to the ER, not the MRI. He didn't argue this time.
Let me back track just a moment to talk about what caused this. Ron has been on high dose oral steroids since August 30th. The steroids are horrible on your body so it was time to try to taper down his dose. He was on 60mg and on Wednesday the 3rd he went down to 50mg. By Friday he was showing changes but the doctor honestly didn't think that 10mg would make that big of difference. He went down to 40mg on Wednesday the 10th, and by Thursday morning he was in crisis.
Ok,back to the ER. I filled out the little card, putting his symptoms were difficulty walking & speaking with recent history of stroke. Needless to say, they didn't waste any time getting him back and starting treatment. I called his doctor since we had just been in her office and she called the ER doctors. Within 20 mins they had him back for a CT scan and then IV steroids. He was just starting to get nonresponsive when they gave him the steroids. Their quick actions with the steroids is what saved him. Within 30 mins of getting the steroids he was more alert. We were in the ER less than an hour and he was moved to the ICU.
While in the ICU he was taken for a new MRI. The neurologist came to talk to us (Ron's mom was with me) while Ron was still in radiology. He told us that after looking at the pictures he was shocked Ron wasn't paralyzed or in a coma. He had 8 new strokes. For those of you keeping track, that makes 17 total.
So now what happens, I am sure you are asking. Ron will have chemo tomorrow (we are still in the hospital) and will have time for another chemo infusion before it will be time to taper the oral steroids again. Ron doesn't have any weakness or paralysis so no inpatient rehab this time. Hopefully we will get to go home Tuesday or Wednesday.
We would both like to thank everyone for their continued positive thoughts and prayers. There is so much unknown about this disease that most of the doctors have never actually had a patient with it. We are both having to realize that our old life is over and now we have to build a new one. We are so grateful for our friends and family! Thank you again for reading all this that I type! I will keep you posted.

Entry for February 12, 2008
I apologize for taking so long to get an update but we do not have internet at the moment. Things have also been a little crazy. We are at the hospital today for Ron's last chemo dose. The chemo infusion last month made him so very sick. I am hoping it will be better this time. He had an MRI done last month and it showed no new strokes. It also showed that several of the old ones had healed completely. He is down to 20 mg a day of the steroids so the roid rage is getting better. We moved in with Ron's mom in December. That has been a blessing in disguise. Spending this time with his mom and brother has helped him so much. We live in Cash which is very close to my family and all of our friends. We felt so isolated in Princeton and it was very hard on Ron. We had to give up all of our dogs and all but 2 of our cats. That was the hardest thing about moving. I am still pretty upset but I am go grateful to still have 2 of the babies.
We are hoping that Ron will be released to go back to work by the end of March. We are both trying to settle into some sort of "normal" life. His personality is starting to come back. We won't know for a while how much is gone forever. I am holding together pretty good. Thanks again for all the positive vibes and the friendship. I will write another update after we go to he doctor at the end of the month and determine the next step.

March 4,2007

I have decided to make a real blog for our life since my husbands diagnosis of Central Nervous System Vasculitis. This is a blog that all of our friends and family can read plus anyone else touched by this horrible disease. I am going to post one blog with all of the previous posts from my private blog. Thanks for reading!