So What Now ?

Four weeks into Kaos' training & I have to say he is doing amazing.

I am so proud of him & a very big thank you to those who have helped him come this far. 

 I am able to leave him for a couple of hours without getting distressed which has been lovely, as we all need some me time now & then!

 Just before the weekend, he had two visitors come into the house, using a protocol in which he gets used to a repetitive routine of treats & play time. We have come a long way & still have a way to go, it's been hard work but I didn't think we would have a chance at all so I'm a very proud mumma. 

 

 Since last writing to you, I have started a new treatment called TPN. This is where you are nutritionally fed through the vein. (bloodstream) I am using my portacath (device under the skin with tube in main artery) & having a fluid bag of nutrients, vitamins & energy pumped in 5 days out of the 7 day week.

I had a meeting with the intestinal failure team & this was the outcome. Unfortunately there is nothing they can do for my pain or any future stoma blockages, this is something I am just going to have to live with & maintain which to be honest is what I was expecting. TPN however, came as a complete surprise. 

  This new regime has been started in the hope to make me feel a lot better in myself, to help my chronic dehydration & to help my kidneys in the long run so my need for dialysis or transplantation isn't needed in the short term.

I am now into my third week & count myself lucky as they did want me on liquid food also, but have decided to just go with fluid & nutrients. The first week, I am not going to lie, was absolute hell. I had these wonderful nurses coming by to hook me up & disconnect me & 'show' me what to do. ( I know they had to, it was just very frustrating) but this was up to three times a day & not only did it really piss me off, but I was also so worried for Kaos & his progress....

 Thankfully last Tuesday I was 'signed' off so competent to do it on my own. Now, every Monday evening a nurse will come in & access my portacath, Mondays, Wednesdays & Fridays I go onto a bag that takes 12 hours to run through. & Tuesdays & Thursdays my bag takes 4 hours to compete. I can then take the gripper out on Saturday morning & have 'a break' . Sadly, this is on top of the St Marks solution which I am still having to take for my stoma, so even without oral fluids such as tuppy & juice (which are restricted) I am taking in over 4 litres of fluid alone. I feel like a whale, my face swells, my shoulders, my feet & I seem to be more breathless...

I don't have a good report yet to tell if it's making me feel any better but we'll just have to see what six months does....

 I don't want anyone to feel sorry for me. This is my life & this is the hand I was dealt. However, recent changes has made me think a lot recently about my life & what I want from it. This regime is extremely costly to the NHS & throughout the years I know I have tested them .... Sometimes I wonder, if it's worth it? I mean, I am 35, I've reached the unseen, I've battled the most surprising of conditions, but I'm getting tired now, is it not worth giving someone else a chance? Don't get me wrong, I don't feel like this all the time, I am so grateful for everything life has given me, for my donor & his amazing lungs which has seen me through almost 7 years I never would have had....

But when is the time to say enough is enough? My confidence is at an all time low, I have become a bit of a hermit & practically live in PJ's with my hair scrunched up. I don't feel like a woman, & I certainly don't feel attractive to my husband. I feel like I get up, do this... to keep me here, take that to keep me here, attach myself to these & then don't really do anything else? My time at the zoo is shorter. I don't seem to see many friends anymore, is it me? Is it my depression, my lack of energy?  

 I don't know, all I know is this last couple of weeks has been hard. I've cried a river & more & I don't really know what I have to look forward to. But maybe this will change, in time, if this stuff works & I start feeling abit like my old self again....

We have a month until Easter, lets see what that brings, other than the obligatory Cadbury's Creme egg. 

Thank you so much as always to continue to read my blurgh.... xxxxx