Hopefully this can be opened to show my changes good or bad. I am using this chart that another HSCTer made and I revised with my symptoms. I am reporting every three months instead of each month. At the bottom of the chart explains the color coding.
Another day, another rituxin treatment! This will be my third one, I’m halfway there! WOOHOO
Vitals are not as great as could be: 156/70BP, 96% pulse ox, 97.7 temp, 80bpm. I only had to be stuck twice, she had it the first time but the vein blew! We had been talking insurance so that could be why blood pressure was up, that usually will cause that result every time.
Since last time, I have started getting my vaccinations on May 31st. I had my polio and first round of hepatitis B. Not much has changed on my symptoms but that is a good thing. I have gone back to sleeping four hours at night before I have to go to the bathroom. I took my last bactrim the middle of May and since then I am now working on my second yeast infection! Dr. Gomez and all the girls say I look so much better and I feel better. I just need to try to do more stuff around the house but it is so hard to do things in the chair, I know, that’s just an excuse!
Had an appointment with Dr. Mallard and he is ordering me a brace for my right knee to try and stop the hyperextension so my Bioness machine will work better for my drop foot q. Their rep said that was my problem why my machine is not working properly. I got a new grab bar to put at the window in the dining room so I can do my leg exercises and look out the window. That should help with my balance and hopefully my walking.
I go Monday to see my neurologist, Dr. Chan, and I hope to get an MRI and it will show that my MS is in remission. I think he will see that my strength in my hand and arms are so much better and leg strength is better also.
My appointment was at 8:30 and it is 9:30 now, still waiting for the blood results. I have the I.V. in so it should be a matter of time. I see Dr. Gomez at 11:30 so thank goodness they are in the same building. They have had a lady from Oklahoma call cto see if they can do her rituxin but they don’t know about her insurance. I hope they can help her.
After my appointments, we are going to go to Dollar Tree, Walmart and eat lunch. As always, we make a day of it. Poor Shadow looked so pitiful when we left but we told him we wouldn’t be gone all day! Do you think he believed us, probably not.
Well it is now 10:30 and I think they have lost my blood because I am still waiting for results. Dr. Gomez went ahead and saw me while waiting. Both her and her nurse are amazed at how well I am getting around. She says she is going to advertise blood disorders and MS treatment. I think they are as happy as I am with my results. Kristie asked about bleeding and I told her I was getting nosebleeds and they suggested l cut back on my Aleve, so I am going to go down to one every twelve hours. I sure don’t want to start having arthritis pain in my left thumb. 10:45 and my drop has started. YAY!!!
My eyes are getting heavy so I am going to say adios and post again later on another day when I have some news.
I am 6 months post and had my eye exam yesterday where I received some very good news. He had me do the good old “follow my finger or pen” and of course I can’t see for myself but he told me that my left eye was a little jerky following it. My eye use to be so slow that when it got to a certain point it would sling to catch up with the right!
This test was done on me in April 1992 at my first visit with a neurologist and to my surprise he gave me his ruling. 95% sure you have MS so the next week I had my first MRI and it showed the white plagues on my brain. I had gone to this appointment by myself thinking I needed a back doctor instead! Needless to say I walked out of his office thinking I had been dealt the death card. I called Jimmy in tears and we met at the apartment and had a good teary-eyed talk.
After learning what MS was all about, we realized it wasn’t a death sentence but a life in prison sentence! As the years went by and my movement slowly went downhill, normal life became a big pain in the butt but Jimmy and I stuck it out. Two weeks after my diagnosis, I had my first bout of optic neuritis and we decided the my fate had sure enough been sealed.
With my treatment with HSCT, I think my life sentence might be coming to an end. I can now turn my head to both sides and only see one thing that I am looking at instead of two! Maybe one of these days the doctors will let me drive again. Best decision I ever made going to Clinica Ruiz in Puebla City Mexico!
Here I am again at the Twin Rivers Cancer Center getting my second rituxin infusion. My vitals are 98.2 temp, 117/62 blood pressure, 93 pulse ox, 87 BPM. I know everyone finds these numbers exciting but it is a way for me to keep up with it. As soon as my bloodwork gets back, we’ll have another set of numbers!
It has been two months since I have updated on my symptoms. They haven’t changed much since last time. My signature is getting so much better and close to what it originally looked like. I can actually use a stick pen at the cash registers instead of having to dig out my special pen from my purse. My balance is slowly getting better as long as I stand still but my right foot drop sure causes me trouble in walking.
I have an appointment tomorrow at Hanger Clinic to be evaluated for a WalkAide. This unit works like my Bioness L300 but you don’t have to wear shoes or carry a handheld unit for control. It has been three years since I have worn my Bioness machine and it shocks me but it is out of sync. Since I bought my unit, the lab has quit selling them and working on them. Just like other medical equipment and suppliers, the first question they ask is “Did you get it from us?” You answer “no” and their answer is “Sorry, we only work on units we sell.”. GRRR!
It took me forever to get a rep from Bioness to contact me to look at it and I go see her in Jonesboro on April 28th at Health South. We shall see then if it can me recalibrated. If it can’t, I’ll have a used machine to sell! It was purchased in 2011.
I have my last physical therapy Friday so I will be on my own! I have purchased a hand grip exersicor, some thera-putty, and some floral marbles. This way I can continue these at home,as well as my other exercises. I was showed yesterday how to do some exercises in my chair for my core. These will help with my balance and maybe my walking. Since not walking my back muscles have went downhill and they go out way before my leg muscles do.
My bloodwork looks good. My glucose is high but we ate breakfast at Hog Wild before coming over here. I use lots of sugar in my coffee! My white blood cell count is 7.5 and my lymphocytes are a little low at 19 by one point and all my liver counts are good.
My treatment is almost over and so I shall close this post for now and proof this so I can post it.
Have a wonderful day!
Today way a very busy and exciting event filled day! They were here this morning to take my last blood draw at 7:15am this morning. My temp was 115/74 with 84bpm and temp of 36.0C.
I had a wonderful night and this may not sound like a big deal but to me it is…. For the second night in a row, I woke up one time to go to the bathroom before I woke up at 6:30am to go again. Usually I wake up about every two hours, so I am hoping this is my first good sign that this is working. Keep your fingers crossed that I have a good third night!!
We left for the clinic to be there at noon and I had to be with Group 3 since my numbers didn’t reach when the others in Group 1 did. They got to go at 10. I did get to see the group but I hope we all feel good enough to be able to get together before we leave Puebla. I feel that I have met 4 kindred spirits that I can call my lifelong friends. I also think the world of their carers and want to remain friends with them also!
Spoke with the doctor and he was very pleased with my numbers which were 39,900 white blood cells, 10.5 hemoglobin, 36.6C temp, and 130/83 blood pressure. So with that, I got to go have the rituxinmab infusion and with that my treatment was ended and I got to sign my discharge papers and fill out a survey which in my mind was all excellent except for à few goods. I handed out my Razorback gifts to everyone and they were very happy and pleased! I was very surprised that they in turn gave gifts also! How many times did you get a gift from a doctor in the states? Not me!
I also got to put a tack on the wall to show where I am from and I am the first to put a tack in Arkansas. There was a lady from Little Rock who had HSCT in several years ago. I though am the trail blazer for Clinica Ruiz in Puebla City Mexico. I hope I will not be the last. I would also recommend Chriss as a carer if one would be needed.
The tack may be a little off because Chriss had to hammer it in for me so he took the first picture so I could show him where it went. I know it should be a little closer to Missouri but hey surprisingly enough Piggott wasn’t on the map!
This is me standing trying to point at the tack and if it looks like I am in a strain, well I am. I stood and there was nothing to hold on to and I couldn’t turn so Chriss had to really get in a strain to take this but it’s done.
I am closing for the night and I am sure I have missed something but it can be posted later if I did.
Good night everyone!
Woke up this morning to daylight savings time in Puebla and couldn’t figure out why the hometown time was still an hour ahead! We go back next Sunday morning so I will gain two extra hours of sleep! WOW
Got another shot of filigrastam today and had blood drawn! I think they are vampires down here. Well I am the only one in the group that is still neutropenic so I still have to continue with the shots. The doc says I should be in the clear by Tuesday, next blood draw. My numbers this time were 2400 white blood cells(need to be over 4000), platelets 100,000, hemoglobin 10.1, pulse ox 96, temp 36.6, and blood pressure 118/84.
I ordered my six month supply of both bactrim and aciclovir plus a years supply of the rituxin. If I can’t find a doctor to prescribe and give the rituxin maybe I can learn how to give myself an infusion?!?! This all totals to about $3000 pesos. There is only two in the group that has not found someone to do the infusions in the states. Two their PCP will do it and the other one has a nurse friend that will do hers! Keep your fingers crossed that I have some luck after I get home and start calling again before I have to have my first infusion in January.
With all the extra meds I have to bring back, I may have to leave a lot of stuff here. As long as I can get my clothes and electronics back, I can always replace the non-essentials in the states. Maybe I should have brought an extra suitcase. Hindsight is always 20/20!
I have had good days and not so good days with my MonSter but the days seem to all be better than before I flew down here! It has all been worth it as far as I am concerned! Thanks to everyone for your help!
Until later, this day is done!!
How low can we go?!? Not much further according to the doctors. He said the numbers should start going back up at our next blood work appointment on Sunday. He did say that everything including me was normal. Okay you can stop laughing now cause I know you all think I am anything but normal!!
My white blood cell count was 500, platelets 47000, pulse ox 92, temp 36C, hemoglobins 3.3 and blood pressure 107/75. Now ponder that what you want, they are really just numbers to me but I want to keep up with them for my own records. I spoke with him about not finding anyone yet to give the after care infusions of rituxin and he said they would help me with that! How? I don’t know yet!
Now I am going to do some complaining and I am sure that will come as a shock to everyone! I signed a contract with a lady to supply my caregiver, which I have been happy with, but the administration part has left a lot to be desired. A copy of the signed contract should be signed and made available to all parties involved and this has not been the case. Contract states that caregiver supplies blood pressure cuff, thermometer plus other stuff which he had no idea he was to do such.
I had a little bit of tummy ache and he felt my head and said I could have a fever! With that being a major concern during HSCT, I told Chriss to get a thermometer. The comment he got back was borrow one from another carer! Unacceptable in my eyes and for what I am paying for the service. That contract was the main reason I went with this company and for what the administration is making they can supply their carers with the items they list as being supplied!! Had I known that I would have to buy one, I would have brought one from home, I’m sure I only have a dozen around the house so now I have a baker’s dozen! my temp was 36.something, normal again!
I guess I should be thankful that there is only a week left and I’m not upset at the start of the treatment! Any way things are pretty slow here today and my tummy has calmed down, so it could have been the chilli Mac from the bucket that upset it!
Oh well, until tomorrow which will be a slow day again!
It is another uneventful day in Puebla City, Mexico but I feel great!
They came this morning to administer the filigrastam shot around 7:30 am. The battery in the blood pressure machine was low so that didn’t get taken but my temp was 35.6C. I got another good shower this morning and had granola w/strawberries for breakfast out of the bucket. So far nothing I have tried has been spit-out bad. Thank goodness cause I bought a bucket off Amazon for the house. I think I can boil water and pour it in and let it set for 15 minutes.
I don’t want to jinx anything but I am going to put it out there. I feel like I am bending my right knee without help so when I sit down I don’t flop. I can raise that leg about 1\2 inch off the bed which was zero before! I haven’t tried walking with the Walker yet but that’s coming soon, maybe the weekend! (Mom and Dad you know what I am talking about with my right leg!)
I think I might be losing some hair, the towel was full after the shower! The buzz maybe coming soon too.
That’s about all there is here. The TV shows that are on today were probably on yesterday!
Good times ahead and everyone have a wonderful day!!
I am in a NEUTROPENIC state of mind!! Got my numbers today and I really don’t understand them that well but when I ask I’m told not to worry they should be going back up by Friday which is next blood work. I do know my blood pressure was 139/77 which was up a little. The rest my spelling is going to be off I’m sure. My lucecites were down to 1000 and my platelets were 94000. The doctor said I would have normal counts when released Wednesday.
We were to be at the clinic once again at noon and once again our driver was late! He jumps out of the vehicle and says he’s sorry! I told Chriss I don’t know why he apologizes cause we all know he is going to be late. He thought that was funny!
All but one in our group has reached the neutropenic stage but the doc says that could be normal.
I got the masks out that I had ordered and they were so much better than the ones that hold the hot air in. They fit pretty good if you get them opened right but Chriss fixed it for me. It also doesn’t help if you have a chubby little face like mine!
I am fixing to order me a month’s supply of emergency meals that I am eating now so far they haven’t been that bad and I think they will be cheaper than NutraSystem. That’s what I’ll be having for the rest of the year!
Until tomorrow, good day!
Mo's Revenge on MS 