Hi Tracey - so sorry - you must be exhausted - but glad the colostomy is only temporary. I was sick for about three years before my transplant - slowly declining - slowly losing the ability to do all the sports and outdoor activities I loved - until i had become a full time patient - getting weekly transfusions etc. Before the transplant, as I mentioned somewhere I think (brain fuzzy) they found heart disease - needed stent - changed transplant plans - a very depressing time In many ways the period leading up to the transplant was worse than the transplant itself - that all said - my pre-transplant sounds like a picnic compared to what you have gone through. The good thing about finally getting the transplant is feeling like I can actually get better - back to normal -or at least close enough.
At this point just focus on getting stronger - try an eat and gain weight - don't worry too much about what you eat - healthy is better but calories are better than no calories- maybe try protein bars or drinks - ice cream is always good - so rich in protein and calcium
Move as much as you can and appreciate your loved ones. Don't despair - stay hopeful and grateful - you will get through this - a positive attitude is critical - i believe this in many ways will be the hardest part - not to say the transplant will be easy - but at least you be on your way up and not hanging in limbo. Talk to your transplant team and see if they can do the transplant sooner than later - they may be able to work around the colostomy - especially if you don't have any active infections. During my transplant they were careful not to do things that would be too stressful for my heart - they are used to dealing with many "co-morbidities".
My transplant team and cardiologists made it a priority to just get me in good enough shape for the non-ablative transplant - not totally fix the heart first - just some duct tape. They also felt the MDS was contributing to the heart problems - and it may very well be contributing to your other problems
Sorry if I'm rambling - but I want you to get the transplant done and on your way to being well again - and I really want you to stay strong and positive until that time - I fully intend to hold you to our summer coffee date - you are in my prayers and if can be of any kind of help let me know -
Stay strong! paul