In the hospital again

After a long week of trying to convince my dialysis nurse at the clinic that no, wearing a mask is important when your opening up someone's chest catheter, I am now hospitalised with an infection in my blood. This is very familiar to me and I'm not liking it AT ALL. I'm afraid that I will wind up just as I was last year with no hope and in the hospital for weeks on end. The vascular team keeps putting off redoing my AV graft and now they can't touch me until this infection is gone. That can take up to 6-8 weeks!

Thankfully I have a dear friend staying with us that is helping us to keep things straight and the house on some kind of routine. The boys also have their therapists now which is also making things easier.

I'm going to try to get out of this clinic before they kill me, but they are making it difficult and I'm not sure I can work around their hoops.

Huge update and a promise

OK so once again it's been forever since I've updated. For those who have been following along, I had an AV graft put in last November, almost a year ago now. Unfortunately, about 3 weeks ago it clotted off after I had a hospital stay battling a disease called C. Diff.

So, back it was to a chest catheter and all the attendant dangers of it. When I was released from the hospital after it was put it, it was already showing signs of not wanting to work. 2 sessions at my clinic later and it was not working again and back to the hospital for me. During the in between time, I was diagnosed with Lupus and Fibromialgya and had been experiencing a terrible flare of both at once. I could barely move. When I was admitted this time, to once again replace the catheter I took a fall when I was transferring from the transport chair to my bed after a test. I heard a terrible *crunch* and I couldn't get up. My spine as given up. It was the consistency of pancake batter. I was then given a walker to walk short distances with and a wheelchair for longer distances.

When the physical therapist came to see me at my home, they confirmed that they don't really want me out of the chair for much of anything. My strength is nothing and my balance is worse than that. So, I now see physical therapy in my home 2 days a week an and occupational therapist who is helping me to learn how to maneuver myself around. Honestly, I'm not upset although most people expected me to be. I have more freedom of movement and I'm in less pain over all. The biggest hurdle we have to get over is how do we modify a 3 story home so that it's mostly accessible to me? The stairs leading to the outside are the biggest issue but have the clearest answer: Build a ramp. So I am making jewelery and things to sell on Etsy all of the proceeds go to my having the materials to build a ramp.

If you wish to purchase something from me please visit my Etsy Store

And now a promise. I will update this blog once a week at least.

Medical Update

I got a lot of great news! First of all the medical stuff:

I got a phone call from my transplant coordinator and we set up my final tests to finish my profile to give to the transplant team.


My Sister in soul- Ng got a call from my Transplant coordinator as well. I don't know what it entailed, I didn't think to ask, but the fact that she got a call back means I am that much closer to being done with all this!

Now for school: I currently have a 4.0 and perfect attendance. I am also one of the class leaders it seems. I guess there is something to be said for being immensely reliable. I am planning the schools Criminal Justice social for late this spring/early summer and planning on joining the Criminal justice club and becoming a tutor.

Yes, I am doing a whole hell of a lot, but just let me say this: After so many many months of being completely inactive, this feels really good. I'm being productive and working towards a career which is something I've never had.

I've been immensely lucky while all this has been going on, I feel really good. I'm on overnight dialysis now, and it's working better than I ever had any right to think it would. It's easier on my body and I sleep fairly well while I'm there.

I hope to be updating more often than I have been, but life being what it is, I can't promise that right now.

Medical Update

  It's been a while since I've posted a medical update, and I apologize for that. Things have been rather crazy, but in a good way lately.

   After I was released from the hospital on December 8th I was the new owner of an AV graft, that is a small tube in my right forearm connected to a vein and an artery. This allows for the dialysis needles to enter both sides and draw blood and cleanse it more efficiently. The surgery was long and the healing painful, but it was finally ready 4 weeks later. In the intervening time I was again hospitalized with another catheter infection, however lucky me! The infections never left the catheter. So, thankfully they just pulled it out and that was that. I had been having some neurological symptoms, however over time they seem to have cleared up. I honestly believe it was because of the ineffectiveness of the catheter that caused them.

   So, the New Year came and went and the access is holding up -beautifully-. It's doing well enough that I have returned to college and am now on the overnight dialysis unit where I go in at 9pm and sleep there while the machine runs until 6am or so then go home.

   I cannot thank the many friends and family members who have worked to assist us in our time of need over this past holiday season, and I know that I can never ever repay that generosity except to keep paying it forward as I try to do always. I know that should anyone ever be in need..if I can help Tell Me. I will.

   I will be posting a more personal update tomorrow about how life is going outside of medical things, as well as pics of the kids ;) Stay tuned.

Transplant and Time and Illness

   So many people have reached out in an effort to assist my family and I while I am going through this issue. I've also seen the eagerness in some of them. I know you are eager, folks however there are somethings about transplant you need to know. (especially on my case)

• I have Endocarditis, which is an infection on my heart. I cannot even be listed as available for transplant until they are finished with the Antibiotics and the TEE (camera down my throat to look at my heart test) is clean. The reason is, if this infection is not cleared up it will infect the new organ and because I will be on Immune Suppressants and any infection while on those could kill me.
• While I have this infection, I have been going through my "work up" which is a bunch of tests checking just about every major system in my body to make sure there isn't any further damage we didn't know about. At this point, I only have one or two tests to have. 
• Using this time (For potential donors) to get your own workups done is a great and valuable thing. It will make sure that whoever winds up as a donor is ready when I am leaving no gap for something else to occur.
• For those who wish to be living donors, you have no idea what a wonderful gift you are giving me, however meeting the guidelines is so very important as is making sure you are patient while we ride through the process together.
• It is also a rule/law that you be over 18 to donate to me. I have seen some people on various bulletin boards saying things about wanting to, but can't tell their parents because they would say no. If you are of an age where you have to listen to your parents legally, then there is no way you can donate yet. I'm sorry , but if you still want to help me feel better, I love getting cards and letters. 
• I highly suggest potential donors read this website: http://www.livingdonorsonline.org/ It has wonderful current information and answers questions you might have concisely.
• There is an issue of cost to also keep in mind. Insurance covers the cost of the medical stuff, however there will be time off from work and the bills, they don't stop because your a saint and gave up an organ (not being sarcastic here, I really think anyone who does this is a saint) To help with that, my family and I have set up a guest room in our home for the donor to come back to and recover. Meals etc will be provided. We are currently working on figuring out some fundraiser to assist the donor with expenses.

 I'm glad you took a moment to read this, and I hope to hear from you soon!