Yesterday Amy and I met with the transplant team. We have the coordinator, my newest best friend, the Surgeon, the Ca$hola Lady (these things are stupid expensive) a social worker, the dietitian and some lady that kept popping in with papers.
So where are we in this process? After meeting with all of the above it looks like I am good to go for getting on the list. But its not that easy. The team I met with presents my case to the greater transplant committee. They decide. Based on conversations the most likely additional thing I may need to do is a cardiac catheterisation. Ill know on Monday for sure.
So I get on the list for a kidney and pancreas. While I am waiting for the organ fairy those who have offered to be live donors are getting to tested to see if they match. Until I know if any one is a match I don't really need to decide much. If there is a match then I need to decide whether to go with a live donor kidney or wait for the kidney and pancreas to arrive.
Live donor organ tend to last longer than cadaver organs, but then that 2 surguries to install them. Also getting a live done kidney can cause the with for a pancreas to lenghten. But according to the surgeon 85% of the quality of live comes from the kidney. However imagine NO MORE DIABETES.....As the Doc pointed out, there is no wrong decision here. However it works out will better then dialysis.
Ill keep you all posted to any new developments.
mmg
Friday, July 31, 2009
Friday, July 24, 2009
Update
Some news Items
Work- The doc recommends one more week of down time. So I should be headin' back to work on or about August 3. Hope that it "works".
Dialysis- Amy and I participated in a Dailysis options program earlier this week. I am going to investigate at home hemodialysis. Would mean 2 - 2.5 hours 5 - 6 days a week. I would have a smaller machine at my home. Looks like this may be the BBD (bigger better deal). I will checkout the program in a couple of weeks.
Transplant - Amy and I meet with the transplant team on Thursday July 30 we will get the real deal from the folks at Froedert. Stuff that I have learned so far. It seems that the kidney AND pancreas transplant is the way to go. Imagine NO MORE DIABETES!! This is a reality. The transplant list is also shorter for 2 organs than it is for one. I have been told it is 9 - 18 months once on the list. If I go this way I am better to NOT get a kidney from living donor. It makes the match for the pancreas that much harder. More on this in a week.
Will - is still cute as ever, He will be one in a week. How time flies. Seems like just weeks ago I was being handed a tiny newborn. He is now walking, or shall I say toddling. He also has a few words now. He says Hi, Uh Oh, and All Done. Sometimes he says these over and over. Now for the cute pic of the week.
Work- The doc recommends one more week of down time. So I should be headin' back to work on or about August 3. Hope that it "works".
Dialysis- Amy and I participated in a Dailysis options program earlier this week. I am going to investigate at home hemodialysis. Would mean 2 - 2.5 hours 5 - 6 days a week. I would have a smaller machine at my home. Looks like this may be the BBD (bigger better deal). I will checkout the program in a couple of weeks.
Transplant - Amy and I meet with the transplant team on Thursday July 30 we will get the real deal from the folks at Froedert. Stuff that I have learned so far. It seems that the kidney AND pancreas transplant is the way to go. Imagine NO MORE DIABETES!! This is a reality. The transplant list is also shorter for 2 organs than it is for one. I have been told it is 9 - 18 months once on the list. If I go this way I am better to NOT get a kidney from living donor. It makes the match for the pancreas that much harder. More on this in a week.
Will - is still cute as ever, He will be one in a week. How time flies. Seems like just weeks ago I was being handed a tiny newborn. He is now walking, or shall I say toddling. He also has a few words now. He says Hi, Uh Oh, and All Done. Sometimes he says these over and over. Now for the cute pic of the week.
Thursday, July 16, 2009
Off to Crusty Butt Colorado
plus
Josh plus Tina plus Justin. Soon to be legally one big happy family!
Transplant stuff
Amy and went to transplant class this week. Covered the basics of what happens from a reciepient and donor point of view. At the moment it look like I am a good candidate however Ill bet there are alo many others. Currently there are 77000 folks looking for a kidney and last year nationwide about 16000 tansplants performed. And 1/2 of those were from live donors.
Monday, July 13, 2009
Mark and his Friend
Me and my friend. We spend about 4 hours a day 3 days a week togather. I expect that we will do so for quite some time.
Friday, July 10, 2009
My Newest Friend
The Fresenius 2008K Hemo dialysis Machine
Read more about it athe the companies site!
Wednesday, July 8, 2009
I'm baaaack - Dailysis Day 19
Ok so I haven't blogged in a while. Actually it's been nearly a year. Being a new dad takes most of my free time. I still get to do some stuff that I did before just not as often. Not that I am complaining you see. Being Will's dad is about the best thing that I can think of. Next to being Amy's partner. Nope not married yet. Coming soon!
Events lately have given me reason to pick up the digital pen again. Not sure if anyone will be reading these. Ifin' you do let me know.
As the title of this blog suggests I have started dialysis...@ days after father days I called the doc at the behest of Amy. Best is not really a strong enough word really, She nagged cried and sent pics of Will. I was not doing all that well. To say I was a tad under the weather is an understatement. I was often nauseous, getting nightly legs cramps that would have sitting bolt upright and howling; I was tired, dragged out and just plain "off my game...". So finally I relented and went to see the doc.
The doc gave several possible diagnosis, 1 Most likely an electrolyte imbalance, 2. Some type of kidney issue, and 3. A reaction to the antibiotic I have been taking for an ear infection (not likely but possible). Confirmation would be by giving them several tubes of blood for testing.
About 15 minutes of arriving home the docs office called, they could not wait for my doc to get in the mooring. The on call doc called with the results. I was in renal failure. I nearly threw up. As a diabetic for 35 years this is not an uprising diagnosis. Unexpected but not surprising.
The on call doc was quite insistent that I immediately get myself to the nearest hospital. I told him that I live but minutes from Frodert, He told me to, and that this was better than being in WB since St Joes did not have dialysis available in house.
I told Amy all of this. Within minutes she had me and Will in the car. She had called to get someone to watch will (thanks Dan!!). Now if you are going to get checked in for kidney issues Froedert is the place to be. The e=room staff took some more blood to confirm the diagnoses, they gave me stuff to help the symptoms, they tested and rested to validate the tests. It seemed that they were constantly taking more blood for several hours. The finally got me situated in the transplant floor at 200am.
I was hospitalized until the following Sunday. During that time I had a permcath insalled in my right shoulder. This is where I get hooked up to the dialysis machine. In the hospital they hooked mar up 4 times.
Dialysis is an exercise in boredom. You get to sit in a chair for (in my case) up to 3.5 hours. I have read quite a few magazines, watched a bit of TV. I got myself a new laptop and hope to make the time more productive.
Since my released from captivity I have a 3 times a week schedule that has settled in on MWF at 245. I hope to update this blog regularly during this time. I will keep you posted with how things are going; more detail on stuff that got m here, assorted randomness that occurs to and is of interest to me.
To answer the question most often asked. "How ya' doing...?" I am doing very well. I am feeling well; one of the side effects of dialysis is a nagging tiredness. That is getting better as well. I am getting more energy every day.
Feel free to give me a call. Please leave feedback with anything that that you want to know, or just let me know that you are checking in.
Thanks
mmg 7/8/09
Events lately have given me reason to pick up the digital pen again. Not sure if anyone will be reading these. Ifin' you do let me know.
As the title of this blog suggests I have started dialysis...@ days after father days I called the doc at the behest of Amy. Best is not really a strong enough word really, She nagged cried and sent pics of Will. I was not doing all that well. To say I was a tad under the weather is an understatement. I was often nauseous, getting nightly legs cramps that would have sitting bolt upright and howling; I was tired, dragged out and just plain "off my game...". So finally I relented and went to see the doc.
The doc gave several possible diagnosis, 1 Most likely an electrolyte imbalance, 2. Some type of kidney issue, and 3. A reaction to the antibiotic I have been taking for an ear infection (not likely but possible). Confirmation would be by giving them several tubes of blood for testing.
About 15 minutes of arriving home the docs office called, they could not wait for my doc to get in the mooring. The on call doc called with the results. I was in renal failure. I nearly threw up. As a diabetic for 35 years this is not an uprising diagnosis. Unexpected but not surprising.
The on call doc was quite insistent that I immediately get myself to the nearest hospital. I told him that I live but minutes from Frodert, He told me to, and that this was better than being in WB since St Joes did not have dialysis available in house.
I told Amy all of this. Within minutes she had me and Will in the car. She had called to get someone to watch will (thanks Dan!!). Now if you are going to get checked in for kidney issues Froedert is the place to be. The e=room staff took some more blood to confirm the diagnoses, they gave me stuff to help the symptoms, they tested and rested to validate the tests. It seemed that they were constantly taking more blood for several hours. The finally got me situated in the transplant floor at 200am.
I was hospitalized until the following Sunday. During that time I had a permcath insalled in my right shoulder. This is where I get hooked up to the dialysis machine. In the hospital they hooked mar up 4 times.
Dialysis is an exercise in boredom. You get to sit in a chair for (in my case) up to 3.5 hours. I have read quite a few magazines, watched a bit of TV. I got myself a new laptop and hope to make the time more productive.
Since my released from captivity I have a 3 times a week schedule that has settled in on MWF at 245. I hope to update this blog regularly during this time. I will keep you posted with how things are going; more detail on stuff that got m here, assorted randomness that occurs to and is of interest to me.
To answer the question most often asked. "How ya' doing...?" I am doing very well. I am feeling well; one of the side effects of dialysis is a nagging tiredness. That is getting better as well. I am getting more energy every day.
Feel free to give me a call. Please leave feedback with anything that that you want to know, or just let me know that you are checking in.
Thanks
mmg 7/8/09
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