The Team Approach

Good news, finally! I had the upper endoscopy and the colonoscopy, and I don't have Crones or even any internal bleeding- at least in the upper and lower! Plus, my Hematocrit was higher than expected given that I had 2 units of blood. So the doctors and I are suspecting that this is evidence that my bone marrow is beginning to produce red blood cells again on it's own. So even though the Guru told us that the Cyclosporin wasn't the cause of the anemia, it is looking like the master was incorrect. Is it coming across that I am a bit disenchanted with my Guru? I have had it with not being able to get in touch with him- and the fact that he doesn't get any of my bloodwork results- or gets them and doesn't have time to look at them. I know he is an excellent Neurologist, but I need an Neurologist who is going to treat ME- not my disease.

I spoke with Dr. Leverett, my primary care who actually CARES, and we have a plan to fight this thing together. No longer will I be in charge of making sure my doctors are able to communicate. They are all aware of each other, and are going to work together to help me get well. I have decided to move all my treatments up here to New Hampshire, rather than trying to coordinate between here and Boston. Exeter has a fantastic cancer center, so they are very familiar with administering Cytoxan (which I will be starting after the holidays). I will be meeting with the Hematology/Oncology group either this week or next to set it all up. Jason and the kids and I went in to see Dr. Logan (my local Neurologist) this morning, and the plan is to manage me with IVIg until my anemia is controlled enough to start the chemotherapy. Dr. Logan is comfortable with the results of my recent kidney function tests and feels that the IVIg will be safe now that the cyclosporin is leaving my system.

I am feeling much less anemic, but the MG is starting to rear its ugly head again. I had some trouble swallowing my pills yesterday, and I was ready to dismiss it, but then I thought twice, and set up IVIg for next week. It is a good thing, because I started to slur again today at about 4 pm. We are going to try our best to stay on top of this thing- I have to get nice and strong to start to kill my immune system!

Sorry to be so technical here- I feel like all I do is talk about medical stuff these days. My awesome sister in law is coming to take the kids this weekend so Jason and I can have some time to ourselves. It is a guard weekend, so we won't have a ton of time, but I am happy to take what I can get.

I am happy with the plan that we have, and thrilled to have all my doctors in the same hospital and in contact with each other. We are going to beat this thing- you all watch me!

Cha-Cha-Cha Changes

Well, once again, it has been a long time since I have written. It is hard to keep everyone updated regularly when I am not totally sure what is going on. Number one, it has been just about impossible for me to look at the computer screen, my head hurt so bad and my eyes were so blurry. On top of that I was having a hard time thinking clearly, and I didn't want to say things wrong and worry people. I wonder if it is worse to not write anything or to write something and have people take it wrong?

So to fill you all in, I went in and saw my primary care doctor following the transfusions and the IVIg treatments to discuss my meds and what was going on with the anemia. I had been feeling really awful over the weekend but couldn't get in touch with my neuro down in boston. I felt that the cyclosporin was really the culprit of all this mess, so I decided to just stop taking it. But then I kind of freaked out doing something that huge without consulting a doctor and I ended up taking one more dose. Well, that night my blood pressure went up to 179/129 and you can imagine how bad the headache and stomach were with pressure like that. I was able to bring it down with meds and rest, but I was quite honestly a bit frightened. Consequently, I stopped the cyclosporin again on my own until I could get in to see someone. Turns out that was a good move because according to my blood work, if I had taken one more dose of the cyclosporin it was very likely that I would have gone into renal failure and needed dialysis. Lovely. So now I have the MG, severe anemia and my kidneys weren't working. Fun times for all. My poor husband was starting to just lose it. It can be very intense around here.

My primary care got on the horn with the Guru down in Boston and he said that the anemia is likely not from the cyclosporin, but the kidneys and the blood pressure and the headaches were. So out goes the cyclosporin for good. I don't know if anyone remembers, but cyclosporin was the last oral med left to deal with the MG. I have taken all of them, and for one reason or another, I couldn't take them because they shut down other systems in my body. Not trying to be a downer here, just reality.

Here we are: we have to figure out where the anemia is coming from. I have scopes set for Monday, and it is possible that they were right to suspect Crone's Disease last year which would explain the anemia through internal bleeding. If not, we have done some other blood work to find out if there is something else going on with my immune system- it could be that my immune system has now decided to attack my red blood cells as well as my muscles. Keeping my fingers crossed that that isn't the situation here. Regardless, there is the question of what to do with the MG now that I can't take oral meds anymore. I don't know if you all recall, but last year we were considering a treatment plan that included chemotherapy. This is now our last step. No doom and gloom here. This is going to work, folks. I am going to start after the holiday season so I don't have to worry about getting sick. We will have to manage the MG with plasma exchange until we can start the cytoxan because IVIg is tough on your kidneys, and mine need time to heal.

I had another 2 units of blood yesterday, and I am feeling much better today. The family is going to head up to Wolfeboro today to see a holiday parade- I hear that Santa is even going to be there. We are enjoying our time together- Family is the most important thing of all and we are blessed to have each other. Jason is the best husband in the world, my kids are great, both my family and J's family are supportive as can be, and we have awesome friends. I am going to be fine- Just bald for a while! I just know that this is going to do it. REMISSION HERE I COME!

Sad news.

For the second time since I began this record of my personal journey with Myasthenia Gravis I have found myself completely unable to write a word. What we go through on a daily basis just seemed so insignificant that I felt completely inappropriate writing about me. A local family with whom we are very close suffered the tragedy of losing a child. Their little infant baby girl passed away almost a month ago. We have been working hard to help them through this terrible time and they have shown such strength and love for each other and for their children that we feel we are blessed to just know them and to be part of their lives.

Now I do know that you all would like to be updated on my situation, so I will try to be brief. I started having a really tough time again last week. Very short of breath, trouble talking, chewing, swallowing. The regular stuff. LOL. It just struck me how funny it is calling that regular stuff. The breathing thing was pretty intense, so I called right away to set up for IVIg treatments, since they worked so well last month. I had my first 60 grams on Friday and was set for another 60 on Monday. Saturday I was much improved, although I was feeling extremely tired, and kind of struggling because it was a guard weekend and J wasn't around to help out with the kiddos. Several people offered to help out, but we decided to just hang around the house, and the kids were good about it, so we did fine. Sunday didn't go nearly as well, and by the afternoon I was feeling really lousy. I called my dear friend Jasmine to come and help me, because I was really not feeling safe being alone with Thomas. (Katherine was at Jasmine's house already).

By Monday morning, I was feeling intensely terrible. Just walking from the hall to the bathroom was leaving me gasping. So into the ER we went. J stayed back with the kids, and my wonderful cousin Margo took me in and stayed with me and my folks came down from Wolfeboro as well. Turns out after lots of blood work, lots of oxygen and quite a few tests that my iron had dropped to a dangerously low level and I needed blood transfusions. After 2 of those, I felt much better. The next day I was given my regular 60 grams of IGg (IVIg) and sent home. I am doing so much better, but I am still really taking it easy. I am still pretty wiped out, to be honest. We aren't quite sure yet what caused the anemia, so there are more tests to come. Keep your fingers crossed that it is just an issue of medication and not anything more.

As always, thank you all for your continued support and prayers and please continue to think of us, and our friends during their time of loss.