Its a cold rainy day in early August and a good day to sit down and ponder this last year.
This last year has been all too eventful. I've seen the down and dirty side of immunosuppression and its side effects. I'm a long way from mouth sores now! I've had anemia that led to getting a transfusion of 3 units of blood. Diarrhea that led to a colonoscopy. And a viral infection in my kidney that led to an inpatient antiviral infusion and then more as an outpatient. Immunoglobulin therapy. Two kidney biopsies. And finally, the drastic lowering of my immunosuppressant doses and hoping for no rejection of the islets. I've now had 5 urinary track infections and just recently an infection on my hand that led to the ER, three different antibiotics and some more time off work. I started back on the pump and have watched my blood sugars go crazy through out all of this. And rightly so. I also am trying symlin to help keep my morning post-prandials lower.
I now have a endocrinologist, nephrologist, infectious disease dr, and of course my transplant and general doctors. I'll be adding a urologist next week because of the UTIs. I did have a hematologist, but have been released from her. So, I've had a few doctor appointments this year as well as a few urgent care visits and two stays in the hospital.
While I'm at it, I've also had some shoulder muscle strains that had me almost immobilized for awhile and a strange pain in my foot that really bothered me and sometimes still does. I've had to adopt a low potassium diet which I hate and which runs counter to a low carb diet. These things along with the UTIs really bothered me more than the other things because it just seemed so unfair to have them while I was already dealing with so much. I don't really mind the things that are directly involved with or caused by the transplant. None of that will ever offset the positives that I have gained from the transplant. And I do think that some of the things that have caused me pain and harm are adding to the wealth of information on the whole process.
Its still amazing that I haven't totally rejected my islets throughout all of this. I have all but given up hope several times. And they keep coming back. Even now my BGs are running high and I'm wondering...
I'm very pleased and proud to have made it this far. My islets are tough, but I think I have learned a lot about keeping myself strong and healthy in the face of adversity throughout this year. It hasn't been my easiest year, but I honestly have no regrets. I'm very luck to have the good insurance coverage that I do. I don't think I would feel this positive if I had to carry the financial part of this experience. I'll give them a shout out after the statute of limitations runs out. I'm thinking I might be flying under the radar now:) And of course, Gary has been so strong and supportive throughout each turn of events. I couldn't have done this without him.
So, happy 5th anniversary to me and my new islets. As crazy as this year has been, and reading back over what I have just written has caused me to gasp a little, I still say this is easier than a year with Type 1 diabetes. I never once lost my ability to concentrate at an awkward moment, or had to stop playing a game or enjoying a conversation or stop what I was doing at work. And more importantly, I have hope for the future that I didn't before my transplant. Hope can make the little things seem tiny.
I'll be posting my 5 year lab results soon. Hopefully, on a warm sunny day.
This last year has been all too eventful. I've seen the down and dirty side of immunosuppression and its side effects. I'm a long way from mouth sores now! I've had anemia that led to getting a transfusion of 3 units of blood. Diarrhea that led to a colonoscopy. And a viral infection in my kidney that led to an inpatient antiviral infusion and then more as an outpatient. Immunoglobulin therapy. Two kidney biopsies. And finally, the drastic lowering of my immunosuppressant doses and hoping for no rejection of the islets. I've now had 5 urinary track infections and just recently an infection on my hand that led to the ER, three different antibiotics and some more time off work. I started back on the pump and have watched my blood sugars go crazy through out all of this. And rightly so. I also am trying symlin to help keep my morning post-prandials lower.
I now have a endocrinologist, nephrologist, infectious disease dr, and of course my transplant and general doctors. I'll be adding a urologist next week because of the UTIs. I did have a hematologist, but have been released from her. So, I've had a few doctor appointments this year as well as a few urgent care visits and two stays in the hospital.
While I'm at it, I've also had some shoulder muscle strains that had me almost immobilized for awhile and a strange pain in my foot that really bothered me and sometimes still does. I've had to adopt a low potassium diet which I hate and which runs counter to a low carb diet. These things along with the UTIs really bothered me more than the other things because it just seemed so unfair to have them while I was already dealing with so much. I don't really mind the things that are directly involved with or caused by the transplant. None of that will ever offset the positives that I have gained from the transplant. And I do think that some of the things that have caused me pain and harm are adding to the wealth of information on the whole process.
Its still amazing that I haven't totally rejected my islets throughout all of this. I have all but given up hope several times. And they keep coming back. Even now my BGs are running high and I'm wondering...
I'm very pleased and proud to have made it this far. My islets are tough, but I think I have learned a lot about keeping myself strong and healthy in the face of adversity throughout this year. It hasn't been my easiest year, but I honestly have no regrets. I'm very luck to have the good insurance coverage that I do. I don't think I would feel this positive if I had to carry the financial part of this experience. I'll give them a shout out after the statute of limitations runs out. I'm thinking I might be flying under the radar now:) And of course, Gary has been so strong and supportive throughout each turn of events. I couldn't have done this without him.
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| July 21, 2013 |
I'll be posting my 5 year lab results soon. Hopefully, on a warm sunny day.
8 comments:
Congratulations on your fortitude. I'm rooting for you (and your islets).
Kathy thanks for such an honest appraisal of life after type 1 diabetes. You're a pioneer, here's to another 5 years of functioning islets for you.
Thanks for the nice comments. I enjoy keeping this up to date for myself, but am always pleased to hear that people are interested in this topic as I am.
Wow!!! Thank you so much for sharing and for being a trailblazer!!
Cool!
Kathy,
I love reading your posts and the insights you share. With all you have been through, to say, "It's still easier than living with T1D", is really telling.
No doubt, even (or especially because of?) your travails, doctors and researchers continue to learn.
Any trips to the Twin Cities planned? You're always welcome here!
I see that they are holding a Life after Transplant education conference at the University, but unfortunately the timing doesn't work for me. I still miss all of you daily.
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