Well, since my transplant live has been a series of roller coasters. Now, my organs seem to be doing just fine, however, due to my compromised immune system I seem to get every cold,flu, virus, infection and 2 bouts of pneumonia known to man. I spend lots of time in doctors offices, labs and lots of time in numerous hospitals. I was air lifted to Vegas the first time with pneumonia and the second time I was so bad I was air lifted to Phoenix and they told my husband I may not may it thru the night. I have tons of medical bills and have had numerous issues getting these super expensive immunosuppresant medications and with no help from the doctors of how to get them we are left to our own devices on how to cope with the frustration and anger and worry of missing a dose. I stock pile as much as I can so that I don't run out but there has been many times I have run out and the pharmacy can not get ahold of my doctor or the insurance won't pay for it or their is some glitch in the computer system and the insurance actually is paying for it but the code they have been given is not letting them run it thru the insurance. It has been a nightmare. My life was changed for the better now that I am not a diabetic. I was a diabetic for 22 years with no problems, no hospitalizations but since my transplant I seriously can not catch a break. I live day to day. I live in constant pain from nerve damage caused by the transplant surgeon during the 10 hour surgery. It is somewhat under control thru pain medications and I have tried everything known to man. Accupuncture, pain rubs, sprays, gels, massage, tins units, herbals remedies, heat, cold, u name it, I have tried it.
I am so thankful for my wonderful husband who is by my side in the ER, doctors office,hospital stay, recovery from surgeries. I have a wonderful family and my mom and husband have been my rocks. Without them and the support of my friends I would not be here today.
My life use to be so active, waterskiing and boating and sports. Now I can't waterski. We do have a boat and go out but I am limited to sitting in the boat out of the sun and basking in the water. It is the only calm I have. The only peace and part of my life that keeps me sane. My dogs keep me sane as well when all I really want to do i cry.
I do little on a day to day basis. I am always tired, always shaky, always feeling blaw and drained and like at any minute I'm going to have to go to the hospital or ER for one thing or another. I was just in ER Feb 27the for an infection and hospitalized for iv antibiotics til March 4 at a hospital in Las Vegas because our local hospital was not staffed with a surgeon I needed for surgery to clean out the infection.
Not sleeping much at all doesn't help but then again I will sleep during the day if I can and try and catch up but then I'lll be up for a day and a half and it's a never ending cycle.
Now, I do love life and everything I have been given. My freedom, my ability to see all the beauty in this world. I see things much clearer an with more appreciation now. The sky and mountains have new meaning and a new beauty to me. Everything seems more vivid.
I am thankful many of my goals I set in my early 20's were accomplished early in life because not being able to work now I would never have had the chance.
I am happy but I am also sad, sad that this wonderful gift of a transplant has had so many more downs than ups and continues to be that way. An end is never in sight. It seems as if I walk by a person with a cold, I get it. I hate being in public for risk of catching something. I stay at home a lot and that was not typical for me pre transplant.
I am wondering what all of you are going thru and what your experiences are!? I hope I am not the only one going thru all this.
I have a bag packed at all times, that is how often I am in the hospital. I dread iv's now and hate when they want blood from me 2 times a day when I am in the hospital. I am not a nice person when in the hospital and I apologize to all the nurses who have had to put up with me. My body can only take so many pricks of a needle in a given week. I had 3 iv's in a 4 day hospital stay. Does that tell you anything?
Well I am tired now and have said enough for now and maybe someone who takes the time to read this might give me a run for my money. Tell me, I'm not the only one going thru all of this. Tell me there is someone else out there like me?
Oh, and what they don't tell you before your transplant is pathetic. I was shocked at the things I have had to do that I was never aware of prior to my transplant.