Thanks again for all of the birthday wishes, that really made me smile
As many of you know, I was Dx'd with Crohns and Microscopic Colits (microscopic colitis CC) over the past 4 years and had 2 surgeries to remove pieces of both my large and small intesine that had been damaged from untreated Crohns and diverticulitis.
Since I have found this site and had the MRT testing, I have bee 100% GF & SF and about 98% dairy free. In addtion to those restrictions I have been avoiding my high and moderately high reactive foods per MRT testing in an effort to calm my immune system. To deal with the MC and Crohns I have been taking Imuran whch has done a great job of controlling the MC and Crohns these past 3 or so years.
This past April after several months of odd symptoms, I was Dx'd with Myasthenia Gravis which is a autoimmune form of Muscular Dystrophy.
So far this has been very challenging as I am slowly losing my ability to walk and it has affected my breathing, swallowing and speaking a fair amount. To deal with this I have been taking a med called Mestinon which increases the ability for the brain to control the muscles in my body. In addition to this I have been receiving 5 day infusions of a human blood product called Immune Globulin which is given IV over 5 days in the hospital, an abbreviation for this is IVIG and have been taking Imuran as a immune suppressant each day.
Recently I had a consultation with one of the neurology groups in Boston at Massachusetts General Hospital that specializes in Myasthenia Gravis, and they are recommending switching from Imuran & IVIG to a combination of a cancer chemotherapy med called Rituximab which is given as a IV infusion combined with oral Methotrexate and Methyprednisolone (low to moderate dose) as well as IVIG for 5 days every 8 weeks
Both the IVIG and Rituximab are given using IV infusions and both are very hard on the veins in the arm. I had one 5 day series of IVIG using the arm veins for an IV in early June, afterwards I looked like someone had beat up my arms, I just don't tolerate long term IVs and those meds in my veins, I was just about black and blue from elbow to wrist.
As it looks like I will be needing these or other IV based treatments more or less for life, my neurologist scheduled me for surgery this past Monday to have a permanent dual IV port like this implanted and anchored to the ribcaage in my upper chest
This is the same model that I have implanted. Its made from solid titanium and the 2 rubber caps you can poke a needle through to give medications to wherever the tubes are placed. As a point of reference the port is 2.8" (7.1cm) long and about 1" (2.54cm) wide and high
In my case the device I have has 2 of the white tubes (catheters) coming out of it. One of the tubes is routed through the arteries in my neck until it is right next to the output of my heart ( placed at the upper atrium of the heart). The second tube goes into my jugular vein. Often a line that goes next to the heart is called a central line.
This past Monday I had the surgery to implant a dual lumen port into my upper left chest. Here is what it looks like today. It is anchored to the ribcage with a few screws and the tubing goes up to the collarbone & neck, thats where the catheters enter the arteries to be routed to the heart.
The good news is that the version of devices I had implanted are good for at least 15 years, many have them last well longer than that. To 'access' them (there are 2 ports) they take a special needle that they poke through the skin into the port device through a rubber membrane. The needle assembly has a IV tube and IV connector already attached, here is what the port looks like when it is accessed with the special needle and IV tubing. This is an example image showin the special needle with the yellow wings to keep it stable and it shows the IV tubing that comes attached. its taped in place to keep it from moving
This is not me, just an example image of what it looks like all hooked up and readu to go:
So overall while the surgery is no fun and fairly painful, once the impant heals, getting an IV or blood drawn or infusion will just mean one needle into this device and your good to go. Now what I really want to do is find the computer symbol for a USB port and get it drawn right next to the device LOL....you have to be able to smile at these events in life.
I asked my neurologist how long I will need to keep this device implanted and her response was "honestly from now on." Normally these devices are used with cancer patients to help tolerate the chemo infusions for the same reasons I got mine. With cancer patients they only keep theirs for 1 to 2 years and them have them removed, with chronic conditions like MG thats not the case, although I really do hope for remission.
Even with remission I will keep mine for a while just to make sure, the surgery to get the permamant version, the type I now have (not the cancer patient version) is a lot more involved and painful. It took 4 hours on the operating table this past Monday. Good news is that its feeling better, healing and DONE LOL I won't be in a rush to have it taken out, its quite usefull for a lot of normal events like a blood draw or regular IV.
As a side note, with the Imuran and IVIG, I have had almost 100% Normans...its great, this is the first ime in years I can say that, controlling the immune system really does help MC. Along with the meds I have started using a cane full time. I found I was falling too many times a week. A good friend (with a lot of medical experience) purchased a cane for me as she observed me falling or tripping on a trip together in Boston. Initially I fought the idea of a cane, but now you wont find me without it. Its amazing how well they work and how fast we can accept them and appreciate them
Well next weekend (the 19th) is my daughters wedding in Virginia, I'm looking forward to that. Two weeks after that I will be back in the hospital and will have a chance to take my new plumbing for a test drive with my next round of IVIG infusions.
Thanks agian to all here for your supoprt and wonderful notes, the knowledge I have gained here has been incredible.
Thanks all
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