February 8 update!
Early February Update!
Things are moving forward, slowly but surely. I have chosen 3 hospitals to put my name on their transplant lists: UPMC, Cleveland Clinic, and the University of Cincinnati. The first is in the city of my birth, the second is highly respected by me, and the third is also highly rated, but is near where my brother lives. That should help out in travel if that site comes through first.
Dialysis is the same as it ever was. Slightly boring sitting there for 4+ hours, but since it keeps me feeling better, I never miss a session. Even during the polar vortex, I was out driving to the site at 6am to get my treatment.
I had my phone interview for Social Security Disability today. They're forwarding on my case to Columbus for medical review. If that passes (which it is likely it will, due to my condition), I should be getting a decent amount of money per month to help me out. That will start in July, however, so there's still a period where things will be tight.
The Social Security lady also said I might qualify for SSI in the short term, until Disability goes into effect. That might help take care of February-May, so I'm keeping my fingers crossed. I didn't think I would qualify for that, but I will defer to her knowledge on that front. Any little bit helps.
There's no help available from the State of Ohio because I do not have any children. Cats, apparently, do not count.
I go in for surgery on Thursday, February 14th, to have a "port" created to assist with dialysis. I'm not looking forward to this (or to it being used long-term) because of what it entails. They're going to take a portion of a vein and attach it to an artery. The increased pressure will cause the newly attached portion to thicken and grow in strength. Since the surgery will place the new section near the surface of the skin, it will be a lot easier to insert needles into for dialysis. After the port has been strengthened and tested out for efficacy, then I can have the catheter in my chest removed...which will be a great relief. I'm tired of this thing already. Showering is a PITA, as I need to keep it dry. I have shower guards to cover it, but due to my loose skin, it's difficult to get a seal all the way around. I focus on making sure the top of it is sealed tight and put a paper towel under the guard and above the dressing to ensure it doesn't get wet. It's annoying, but getting clean is so worth it, especially after a LONG period of time where all I was using was a non-rinse foaming cleanser. I feel more human now.
The waiting sucks, however. The transplant could take between 3-7 years to get, and since my blood type is O+, I can only get O-type kidneys, which could slow things down. We'll see what happens, but that's a long period of time, IMHO.
Nothing else to report at this time. I'm just focusing on the short-term goals, rather than getting overwhelmed with the long-term prospects. I'm simply glad to be alive at this point. I went to my PCP the other day for a follow-up from my first visit (which is what started this whole saga) and he was glad to see that I was looking/sounding better and also said that, if I had waited even one week longer, I might not have made it. Nothing like staring mortality right in the eye to make you feel like doing everything you can to survive.
I have to...I need to see how Star Wars: Episode IX concludes! :-)
Things are moving forward, slowly but surely. I have chosen 3 hospitals to put my name on their transplant lists: UPMC, Cleveland Clinic, and the University of Cincinnati. The first is in the city of my birth, the second is highly respected by me, and the third is also highly rated, but is near where my brother lives. That should help out in travel if that site comes through first.
Dialysis is the same as it ever was. Slightly boring sitting there for 4+ hours, but since it keeps me feeling better, I never miss a session. Even during the polar vortex, I was out driving to the site at 6am to get my treatment.
I had my phone interview for Social Security Disability today. They're forwarding on my case to Columbus for medical review. If that passes (which it is likely it will, due to my condition), I should be getting a decent amount of money per month to help me out. That will start in July, however, so there's still a period where things will be tight.
The Social Security lady also said I might qualify for SSI in the short term, until Disability goes into effect. That might help take care of February-May, so I'm keeping my fingers crossed. I didn't think I would qualify for that, but I will defer to her knowledge on that front. Any little bit helps.
There's no help available from the State of Ohio because I do not have any children. Cats, apparently, do not count.
I go in for surgery on Thursday, February 14th, to have a "port" created to assist with dialysis. I'm not looking forward to this (or to it being used long-term) because of what it entails. They're going to take a portion of a vein and attach it to an artery. The increased pressure will cause the newly attached portion to thicken and grow in strength. Since the surgery will place the new section near the surface of the skin, it will be a lot easier to insert needles into for dialysis. After the port has been strengthened and tested out for efficacy, then I can have the catheter in my chest removed...which will be a great relief. I'm tired of this thing already. Showering is a PITA, as I need to keep it dry. I have shower guards to cover it, but due to my loose skin, it's difficult to get a seal all the way around. I focus on making sure the top of it is sealed tight and put a paper towel under the guard and above the dressing to ensure it doesn't get wet. It's annoying, but getting clean is so worth it, especially after a LONG period of time where all I was using was a non-rinse foaming cleanser. I feel more human now.
The waiting sucks, however. The transplant could take between 3-7 years to get, and since my blood type is O+, I can only get O-type kidneys, which could slow things down. We'll see what happens, but that's a long period of time, IMHO.
Nothing else to report at this time. I'm just focusing on the short-term goals, rather than getting overwhelmed with the long-term prospects. I'm simply glad to be alive at this point. I went to my PCP the other day for a follow-up from my first visit (which is what started this whole saga) and he was glad to see that I was looking/sounding better and also said that, if I had waited even one week longer, I might not have made it. Nothing like staring mortality right in the eye to make you feel like doing everything you can to survive.
I have to...I need to see how Star Wars: Episode IX concludes! :-)
Glad to hear you're feeling better.
ReplyDeleteHopefully you'll find a donor sooner rather than later. I'd give you a kidney if I could, but I can't (wrong blood type & a medical issue that keeps me from donating anything).
If you're looking for an app to keep you entertained, I can suggest "Cribbage with Grandpas", it's easy to play one handed, the app is really amusing (you can give your "grandpa" different personalities) and Cribbage is a pretty simple game to learn.