please forgive me...
If this post comes across weird or is hard to read or if I seem super moody...in the past three nights I have had 5 hours of sleep each night with no naps during the day...this would normally be tiring but add int hat I am super sick and that I have been trying to get out and actually do stuff you get one very tired pretty grumpy BB...
Real quick I forgot in my last blog post to mention a few more great things that happened last week...Friday on last week my blisters that were by m cath finally dried up completely and are now gone and I got a really nice blanket in the mail from a friend of mine in AZ Kristine...she knit or crocheted it...I don't really understand the difference...I know she did one of the two and I know its purple and I know I love it...the end
As many of you know I had a what's called a fistulagram and an angioplasty done this week on my fistula...that all went well and was only a little painful...then I went and saw my kidney doctor...here's my mom's update from the event...
Real quick I forgot in my last blog post to mention a few more great things that happened last week...Friday on last week my blisters that were by m cath finally dried up completely and are now gone and I got a really nice blanket in the mail from a friend of mine in AZ Kristine...she knit or crocheted it...I don't really understand the difference...I know she did one of the two and I know its purple and I know I love it...the end
As many of you know I had a what's called a fistulagram and an angioplasty done this week on my fistula...that all went well and was only a little painful...then I went and saw my kidney doctor...here's my mom's update from the event...
"Tuesday night, after completing dialysis at home, BB and i set off for Peoria. With an appointment in Morton at 9:00am, we stayed the night in Peoria with Taylor Roe Quinton. Thanks TQ!!
BB had an x-ray on her fistula that showed exactly what the surgeon thought, there was a narrowing. So they did an angioplasty on her arm/fistula. aBBy was able to watch the whole procedure. She commented tha...t it was weird to see the balloon expand and deflate, and that it hurt a little. The surgeon was pretty happy with the results and said the fistula will be ready for use in 3 weeks!!
After getting some lunch and taking a break to enjoy the warm weather, we headed to her nephrology appointment. Abby Kathryn Frye doesn't have to see the dietician since her labs have been soooo good. Dr. Sader said her diet is excellent and she can keep on eating anything she wants. Her potassium was low again. Most dialysis patients are not allowed to have bananas or potatoes since high potassium can be a problem. BB's is low to the point she needs to be put on a Potassium pill. And he took her off of Cellcept which is an anti-rejection drug. He is preparing her body for transplant.
They still don't know why she is losing so much blood and why her hemoglobin is staying low. The endoscopy showed little to no bleeding ulcer, so she is not losing blood there. Overall BB's status is stable. Only thing to get her back on active status for transplant is getting her hemoglobin to a normal level. Dr. Sader commented that we shouldn't have any problems with using the fistula or sticking Abby, he used a joke for his reasoning. We enjoy the visits with him so much. We laugh a lot!!
After Dr. Sader left the room, Kathy (home hemo-dialysis nurse) and Abby discussed her training to use her fistula. Thankfully, the PCT(Becky) will come to Dixon to train Abby and I how to stick the fistula for dialysis. I am so thrilled we don't have to stay in Peoria during my spring break!! She talked to us about developing a button hole for the fistula. We had her explain it a few times and i guess we will just have to see it to understand what it is. We did learn that a button hole will get to the point that she won't have to "stick" herself. The needle will slide in like putting on an earring, pain free!
At her next nephrology appointment, April 25th, she will have been using her fistula for 3 weeks by then, she will have her perm catheter taken out!! That means she will be able to swim when we are in Arizona for her college graduation!! Showering will be normal for her again, after 5 months. Nothing foreign will be sticking out of her body! No more pain from the perm cath!!
And....to top the past 2 days of travel and appointments and dialysis...someone brought us a homemade supper!! We had chicken and noodle soup in the frig!! OMG, it was delicious!!! Thank you to our special friend, whoever you are!!!"
BB had an x-ray on her fistula that showed exactly what the surgeon thought, there was a narrowing. So they did an angioplasty on her arm/fistula. aBBy was able to watch the whole procedure. She commented tha...t it was weird to see the balloon expand and deflate, and that it hurt a little. The surgeon was pretty happy with the results and said the fistula will be ready for use in 3 weeks!!
After getting some lunch and taking a break to enjoy the warm weather, we headed to her nephrology appointment. Abby Kathryn Frye doesn't have to see the dietician since her labs have been soooo good. Dr. Sader said her diet is excellent and she can keep on eating anything she wants. Her potassium was low again. Most dialysis patients are not allowed to have bananas or potatoes since high potassium can be a problem. BB's is low to the point she needs to be put on a Potassium pill. And he took her off of Cellcept which is an anti-rejection drug. He is preparing her body for transplant.
They still don't know why she is losing so much blood and why her hemoglobin is staying low. The endoscopy showed little to no bleeding ulcer, so she is not losing blood there. Overall BB's status is stable. Only thing to get her back on active status for transplant is getting her hemoglobin to a normal level. Dr. Sader commented that we shouldn't have any problems with using the fistula or sticking Abby, he used a joke for his reasoning. We enjoy the visits with him so much. We laugh a lot!!
After Dr. Sader left the room, Kathy (home hemo-dialysis nurse) and Abby discussed her training to use her fistula. Thankfully, the PCT(Becky) will come to Dixon to train Abby and I how to stick the fistula for dialysis. I am so thrilled we don't have to stay in Peoria during my spring break!! She talked to us about developing a button hole for the fistula. We had her explain it a few times and i guess we will just have to see it to understand what it is. We did learn that a button hole will get to the point that she won't have to "stick" herself. The needle will slide in like putting on an earring, pain free!
At her next nephrology appointment, April 25th, she will have been using her fistula for 3 weeks by then, she will have her perm catheter taken out!! That means she will be able to swim when we are in Arizona for her college graduation!! Showering will be normal for her again, after 5 months. Nothing foreign will be sticking out of her body! No more pain from the perm cath!!
And....to top the past 2 days of travel and appointments and dialysis...someone brought us a homemade supper!! We had chicken and noodle soup in the frig!! OMG, it was delicious!!! Thank you to our special friend, whoever you are!!!"
I'm too tired tonight to tell you about it myself...plus even though mom was able to write all of this I feel like there wasn't much to report...I am getting really sick of people asking me if I am on a list though...obviously if you cared you would be reading these and see what a mess this all still is and that NO I AM NOT ACTIVE ON A LIST BECAUSE MY BLOOD IS WACKED OUT...maybe if I put it in caps people will remember that and I won't have to answer that question anymore and then want to cry every freakin time...I don't mind explaining the blood situation but if you want me to do that just ask me to...don't ask about the list to...that to me just means you aren't actually paying attention to what I write or what my mom writes so you don't really care you are just trying to be nice...I don't need more people around who are just nice...I need people around you actually care and who want to be invested in my life...all of it...even the times when I am moody and just want to punch everyone in the face...I don't have time for fake or sometimes friends...if you haven't noticed I'm freakin sick and facts are transplant-less I'm slowly dying...so forgive me that I refuse to put up with people's crap...I've got better things to do with my free time...
Speaking of which I love this warm weather...I love that I can be outside and that I am not trapped inside all the time...not only the weather but being able to be out is helping put me in a better mood...I have been trying to take short walks...and I mean short...I can usually only walk about 6 blocks total (3 away from the house 3 back)...even that leaves me feeling completely worn out...good news though...yesterday dad loaded our bikes in the truck and took them to the bike trail...he mom and I went for a bike ride and I made it a little over a mile and a half total...so that feels pretty nice...I felt dead afterwards but I still did it...and today I walked around the mall with my sister and sister in law...I have been trying to do more stuff to try and combat my depression and my mood swings...which is really freaking hard and I am not always sure it is working...but even just not being confined to the house anymore is good...I have been sitting out on the deck a lot...even though that's not really always from the house I still feel like I can do something...and I hear Vit D from the sun is good for your body...
I can't lie though I still get depressed a lot...and I still battle with knowing I should do things or see people but not really wanting to...which I know sounds weird since I complain about not being able to do anything...but that's why depression can be such a trap and an endless cycle that sucks...
Tomorrow I see the GI doctor again and I will see what he says about the thing they found in my stomach...and that's it for appointments this week...this will be the fourth week in a row where I have had at least one doctors appointment every week...I don't think I have one next week so that will be a nice break...
ps...my hair is still falling out a lot...and no matter hwo much a joke about it or try to accept it...it really is a major bummer
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