Jim and I went to the nephrologist today and we were given a time line for dialysis. His labs showed a creatinine level of 7.1 which is the highest he has ever been. With this level she thinks that his kidney function is roughly around 9%. The doctor quess-timated a dialysis start date of February. We have a scheduled appointment with the nephrologist toward the end of December and with a tentative port placement in January. The port has to be placed for 2 weeks to a month before we can use it. All of this news does not come as a surprise, it comes as more of a gut check. I think that we always knew that dialysis was something that was going to happen however getting a date makes it all seem a little more real.
Jim's other levels were average. His potassium and phosphorus were normal to high. We will probably increase his "food" pill after the holidays. The cardboard diet that Jim is partaking in is working well enough to maintain his potassium level so that was reaffirming news. Jim's A1C level (sugar history) was a little higher than it has been so we will continue to be diligent about his sugars.
The doctor scared us a little by asking us about which hospital we are planning on going to if Jim starts to feel poorly. We are going to request prayers for Jim to feel good through the holidays. Last Christmas Jim had pneumonia, two years ago he was swollen and just beginning this kidney failure journey, so we would love to have a relatively healthy Christmas.
We had a slight scare this weekend with Jim's blood pressure soaring into numbers that resemble more of a basketball game score than blood pressure so today we made some changes to his medicine. I am hoping that this new medicine will help return his numbers to normal, otherwise I will soon be taking these medications to control my blood pressure.
Along with all of these numbers we also found out that Jim's blood type is AB+ ( sorry this took so long to get Kendra). This is good news because AB+ is the universal acceptor as far as blood type goes. Hopefully this will help speed up the wait!!
Prayer Requests: Jim makes it through the holiday season feeling good and we can push dialysis to February. That the new blood pressure medication helps even out his numbers.
Bible Verse: "Your ways, O God are holy. What god is so great as our God? You are the God who performs miracles." Psalm 77:13-14
Monday, November 15, 2010
Monday, November 8, 2010
I'm All In!
The Poker tournament was this last Saturday night and it was such a blast!! Heather and Jared did a wonderful job hosting and I think everyone involved had fun! We can not thank them and everyone who came to support us enough! Sometimes I feel like a broken record but I can't say enough how blessed we are to have so many amazing people in our lives!
On the transplant front, we are still waiting patiently by our cell phones. They no longer give you pagers to carry around since we have grown into the "phone must be attached to my body at all times" era. I spoke with our case manager and she reports that we are still on the list and that I don't need to check in monthly, even though I really want to.
We have received the blood draw kits today that Jim needs to be doing monthly so he will go and take care of that tomorrow. It was by dumb luck that somewhere along the line I remembered them mentioning monthly blood draws, so I called the coordinator and she replied "oh, right...you aren't doing those...you need to do them." Sometimes I think that I need to carry a tape recorder with me everywhere so I can play conversations to make sure that I didn't miss anything. Hopefully the fact that we missed October's blood draw does not set Jim back.
Jim has a check up nephrology appointment next week so he will get the blood drawn for that appointment tomorrow as well. (if he wasn't anemic before he will be by the time he is done)
Prayer Requests: Jim continues to feel well. Prayers of thanks for such amazing support and friendship
Bible Verse: "Know that the Lord is God. It is he who made us, and we are His; we are His people, the sheep of His pasture." Psalm 100:3
On the transplant front, we are still waiting patiently by our cell phones. They no longer give you pagers to carry around since we have grown into the "phone must be attached to my body at all times" era. I spoke with our case manager and she reports that we are still on the list and that I don't need to check in monthly, even though I really want to.
We have received the blood draw kits today that Jim needs to be doing monthly so he will go and take care of that tomorrow. It was by dumb luck that somewhere along the line I remembered them mentioning monthly blood draws, so I called the coordinator and she replied "oh, right...you aren't doing those...you need to do them." Sometimes I think that I need to carry a tape recorder with me everywhere so I can play conversations to make sure that I didn't miss anything. Hopefully the fact that we missed October's blood draw does not set Jim back.
Jim has a check up nephrology appointment next week so he will get the blood drawn for that appointment tomorrow as well. (if he wasn't anemic before he will be by the time he is done)
Prayer Requests: Jim continues to feel well. Prayers of thanks for such amazing support and friendship
Bible Verse: "Know that the Lord is God. It is he who made us, and we are His; we are His people, the sheep of His pasture." Psalm 100:3
Monday, November 1, 2010
Place Your Bets!
We are so blessed to be having another fundraiser. This one is put on by our dear friends Heather and Jared Anderson! They have arranged a poker tournament at their house on Saturday night, November 6! There are going to be prizes for both players and observers. If you would like to come please let myself or Heather know, we would love to see you there!
Monday, October 25, 2010
Hurry Up and WAIT...
As the title says perfectly, we are waiting, patiently.
We have officially been listed for a little over a month but haven't received any calls yet. For educational purposes I will explain the waiting/ transplant process to the best of my ability(which is limited). Being listed means you get placed on a national list, UNOS, and all of your information is placed in this file. There is no order to this list, at least from what I understand. When an organ becomes available the powers that be go to this list and whoever is the highest match in all of the qualifying categories will get the organ. This means that if an organ is available in Conneticut and Jim is the closest match they will fly the organ here for him. With every organ two people will get called to the hospital. These two people are the ones that are the closest match to the organ. When you arrive they draw blood and do one last cross match between the organ tissue and the recipients' blood. It is possible that with this last crossmatch automatic rejection can occur, disqualifying the 1st recipient and thus moving onto the 2nd recipient and their crossmatch. This is why they always call two people to the hospital, in case the final crossmatch comes out positive (meaning rejection) for the 1st. We were told that you may be called to the hospital several times for this process before you will receive your organ.
During the entire pre-transplant process were were never really quoted a specific time period other than "it is much short than the kidney transplant waiting list." Apparently the wait time for just a kidney alone is 18-24 months and the pancreas kidney list is less than half of this wait time. Jim looked up the approximate wait time through Baylor's website and he found 4-6 months. I anticipate 6-9 months, but the shorter the better!!!!
Jim continues to feel better than we think he should which is a blessing! Our next nephrology appointment is in November and is quickly approaching. We hope that his labs for the appointment will show that his kidneys are holding and we can continue to push back dialysis. From what the nephrologist told us last time, we can hopefully keep pushing it off as long as he feels half way decent. He is still working 4 days a week at the hospital and although it is not the position he longs to hold for the future it is great experience and we are grateful he feels good enough to work.
The wine tasting was a huge success and we want to thank everyone who was able to attend or those who contributed online. We are TRULY BLESSED to have such a great support system of family and friends. We especially want to thank Betsy who went above and beyond the call of being a friend and organized a heart touching, support filled evening that we will never forget! Jim was embraced in love that night!
Prayer Requests: Jim continues to feel good. Jim will receive his transplant soon.
Bible Verse: "Therefore I tell you, do not worry about your life...but seek his kingdom, and his righteousness, and all these things will be given to you." Matthew 6: 25 & 33
We have officially been listed for a little over a month but haven't received any calls yet. For educational purposes I will explain the waiting/ transplant process to the best of my ability(which is limited). Being listed means you get placed on a national list, UNOS, and all of your information is placed in this file. There is no order to this list, at least from what I understand. When an organ becomes available the powers that be go to this list and whoever is the highest match in all of the qualifying categories will get the organ. This means that if an organ is available in Conneticut and Jim is the closest match they will fly the organ here for him. With every organ two people will get called to the hospital. These two people are the ones that are the closest match to the organ. When you arrive they draw blood and do one last cross match between the organ tissue and the recipients' blood. It is possible that with this last crossmatch automatic rejection can occur, disqualifying the 1st recipient and thus moving onto the 2nd recipient and their crossmatch. This is why they always call two people to the hospital, in case the final crossmatch comes out positive (meaning rejection) for the 1st. We were told that you may be called to the hospital several times for this process before you will receive your organ.
During the entire pre-transplant process were were never really quoted a specific time period other than "it is much short than the kidney transplant waiting list." Apparently the wait time for just a kidney alone is 18-24 months and the pancreas kidney list is less than half of this wait time. Jim looked up the approximate wait time through Baylor's website and he found 4-6 months. I anticipate 6-9 months, but the shorter the better!!!!
Jim continues to feel better than we think he should which is a blessing! Our next nephrology appointment is in November and is quickly approaching. We hope that his labs for the appointment will show that his kidneys are holding and we can continue to push back dialysis. From what the nephrologist told us last time, we can hopefully keep pushing it off as long as he feels half way decent. He is still working 4 days a week at the hospital and although it is not the position he longs to hold for the future it is great experience and we are grateful he feels good enough to work.
The wine tasting was a huge success and we want to thank everyone who was able to attend or those who contributed online. We are TRULY BLESSED to have such a great support system of family and friends. We especially want to thank Betsy who went above and beyond the call of being a friend and organized a heart touching, support filled evening that we will never forget! Jim was embraced in love that night!
Prayer Requests: Jim continues to feel good. Jim will receive his transplant soon.
Bible Verse: "Therefore I tell you, do not worry about your life...but seek his kingdom, and his righteousness, and all these things will be given to you." Matthew 6: 25 & 33
Friday, October 8, 2010
Let the wine tasting begin!
So we are getting down to the wire with last minute details for our first fundraiser on Sunday. I think Betsy and I are managing to get all of our loose ends tied up and we should be able to put on a fun night for everyone! I want this night to be in part, a way to celebrate everyone that has helped us along the way as well as a great night for Jim. I am just getting so excited to see everyone come out and support him! Truly we have been so blessed with such amazing family and friends!!! The love Jim is going to feel in that room is going to be overwhelming, and I could not be happier about it. He is such an amazing man and he has been through so much already that being surrounded by support and love is exactly what he deserves!
Thank you to everyone who is keeping us in their prayers. Thank you to everyone who is coming on Sunday. Thank you to everyone who has donated, and thank you everyone for loving Jim and I!!
Prayer Requests: Everyone on Sunday has a wonderful night! Jim continues to feel well.
Bible Verse: "Let us rejoice and be glad and give Him glory." Revelation 19:7
Thank you to everyone who is keeping us in their prayers. Thank you to everyone who is coming on Sunday. Thank you to everyone who has donated, and thank you everyone for loving Jim and I!!
Prayer Requests: Everyone on Sunday has a wonderful night! Jim continues to feel well.
Bible Verse: "Let us rejoice and be glad and give Him glory." Revelation 19:7
Monday, October 4, 2010
Can't Believe It...No Shot!!
Jim went to the nephrologist today and his red blood cell count was 11.9! This in itself is great news, since it meant that Jim did not need to get a procrit shot today (normal is 12). Jim has not had a red blood cell count this high since before we started this whole process. Although this is great news in itself it doesn't help with explaining why he is soooo tired, fatigue must just be par for the course!
While Jim was at the nephrologist he spoke with her about the "crazy" muscle cramps that he keeps getting struck down with, especially in his hands. Since we have been working out Jim keeps getting inflicted with these horrible muscle cramps. The nephrologist thinks that we are adhering to his potassium restriction diet so closely that when he works out he ultimately begins cramping because of the lack of potassium. Now, I have to say that I am very proud of the fact that Jim is getting cramps because this means that we have successfully followed directions! Now, that may sound insensitive and trust me I am not happy that out of the blue Jim loses the ability to have opposable thumbs, but I am happy that we listen so well. (Having friends who are dietitians helps!)
We have had some sugar scares lately which normally wouldn't be all to abnormal however they seem to be dropping quicker than usual. This past weekend Jim's sugar crashed while we were out which normally does not happen so needless to say I was a little scared when I had to struggle with him to open his mouth to eat something. Jim is soon to schedule an appointment with his endocrinologist to talk about these crashes. I personally would love to have something sharp that I can drive into his thigh to help raise his levels back into the normal range so getting him to eat when he is that low isn't a concern anymore (yet again, sounds insensitive but meant in the most loving way possible).
Prayer Requests: Increase in energy level and decrease in muscle cramps
Bible Verse: "There is a time for everything, and a season for every activity under heaven. " Ecclesiastes 3:1
While Jim was at the nephrologist he spoke with her about the "crazy" muscle cramps that he keeps getting struck down with, especially in his hands. Since we have been working out Jim keeps getting inflicted with these horrible muscle cramps. The nephrologist thinks that we are adhering to his potassium restriction diet so closely that when he works out he ultimately begins cramping because of the lack of potassium. Now, I have to say that I am very proud of the fact that Jim is getting cramps because this means that we have successfully followed directions! Now, that may sound insensitive and trust me I am not happy that out of the blue Jim loses the ability to have opposable thumbs, but I am happy that we listen so well. (Having friends who are dietitians helps!)
We have had some sugar scares lately which normally wouldn't be all to abnormal however they seem to be dropping quicker than usual. This past weekend Jim's sugar crashed while we were out which normally does not happen so needless to say I was a little scared when I had to struggle with him to open his mouth to eat something. Jim is soon to schedule an appointment with his endocrinologist to talk about these crashes. I personally would love to have something sharp that I can drive into his thigh to help raise his levels back into the normal range so getting him to eat when he is that low isn't a concern anymore (yet again, sounds insensitive but meant in the most loving way possible).
Prayer Requests: Increase in energy level and decrease in muscle cramps
Bible Verse: "There is a time for everything, and a season for every activity under heaven. " Ecclesiastes 3:1
Monday, September 27, 2010
Again?!
I'm starting to think that someone only wants Jim to get one organ. We received a letter confirming Jim's placement onto the Baylor transplant lists for both Fort Worth and Dallas but yet again they only say Kidney list not pancreas kidney list. So after making several phone calls they clarified on UNOS that no, Jim is on the Kidney Pancreas list, I'm not sure why this is so hard. This is probably the 3rd time I have had to clarify which list Jim is on because of misleading paperwork. I think that when he actually gets called in for surgery I am going to take a permanent marker to his belly and draw the organs on for them and say "TWO ORGANS PLEASE OR NO CUT!!" I think that would be pretty straight forward (:
Other than that, no big changes which is a good thing! Jim continues to stay feeling pretty well overall and we are thankful for that.
Prayer requests: The Lord grants Jim continued good spirits.
Bible Verse: "My soul finds rest in God alone; my salvation comes from Him. He alone is my rock, and my salvation; he is my fortress, I will never be shaken." Psalms 62:1&2
Other than that, no big changes which is a good thing! Jim continues to stay feeling pretty well overall and we are thankful for that.
Prayer requests: The Lord grants Jim continued good spirits.
Bible Verse: "My soul finds rest in God alone; my salvation comes from Him. He alone is my rock, and my salvation; he is my fortress, I will never be shaken." Psalms 62:1&2
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