OK thought I would post since it is now 3 months since transplant!! Just learning to start my life over again with a new routine of feeling good and still having to maintain the doctors and checking blood every week. I started to work out again and noticed how bad I am out of shape! I can't wait to tone up again as the muscle is all lost from the anemia. So things are looking pretty good- we have to adjust my medication as some of my levels are off but this is just part of the process.
I am learning to not be scared when my white blood cell's are bad or creatine is raised or my shakes are so bad I can feel it in my stomach. It is all part of the recovery. It is nice to have my color back and now I want to do so many things I always put on the back burner.
I traveled for the first time to Minnesota to see my grandma and my girlfriends which was nice as Sara and my mom also went with. I am still waiting a few more months to do a family vacation as I have to be careful of germs still.
Here is Sara and I at the airport :)
Monday, August 15, 2011
Thursday, June 23, 2011
Get me off the rollercoaster!!!
http://www.sarajaynegeorge.blogspot.com/ maybe Sara will continue to blog.....
I am not quite sure where to start. I wrote an entire post then thought of the repercussions of people reading what my thoughts were this week and then deleted it. It is very hard for me to share the deepest parts of my life with anyone and I think I really did share a lot since last fall. Although if you read my blog and you actually hang out with me weekly or daily you would know I only told 1/4 of my story as the rest was just too hard to share- like how sick I was really was- how close my kidney's were to shutting down completely.
So here I sit again, not wanting to share what is going on but needing to finish this blog and what I started as I am not a quitter. It isn't that I want to leave anyone wondering or guessing it is just I like my private life private, I have never been one to talk about my problems with even my friends. So I will end my blog with a brief idea of how my week has been and then share an article of a story written on us for the NATCA Insider. I think Courtney has written our story better then we could have said it ourselves. Not sure if I will ever blog again as I just don't know what it left to share.....
WELLLLL....Sunday was father's day and Alexa's birthday so I knew this was not a day I was going to relax. when I woke up in the morning I felt just as I had years past- like I had the flu and out of breath, Had to sit down in the shower. This was going to be a very long day. Needless to say I made it through and Monday wasnt much better. By Tuesday I was getting nervous and called my doctor. My creatine is up but not too high- so it is to be expected a bit. I went from .08 to 1.19 - right before surgery I was at 9.0 but I don't want to see this number rising ever as it is scary that the kidney could fail. And since my other kidneys are shriveled up as there was nothing left what would I be left with...3 kidney's that do not work!
OK- so took the girls to Hard Rock Pool today as Rumi was there with her family. I was not feeling well again but pushed through. Then I received a call from my Mom that my sister just found out her Creatine is rising also. I just about lost it, it would be one thing for me to be sick but if something happened to Sara I would never forgive myself or be able to live with what I have done. I text My Doctor at UMC Tucson which said this could be normal and she just needs to be tested again next week. So Sara is going to see my Kidney Doctor just to make sure.
And that's my freaking rollercoaster- even though things are probably fine and my chances of rejection are very very small it doesnt make it any easier to swallow the pill when they say the numbers are going up. And Sara can live a normal healthy life at 1.19 creatine but it still makes us both nervous that it increased in the first place!!
Still keeping my sense of humor and was able to joke around all night with Alexa and Jordan so that was my therapy. But I have to say I had many moments today I wanted to fall on someone's lap and just break down, however the opportunity never arises so I just have to keep going.
OK- now you see why I dont want to blog anymore- I could do this every week for months- my numbers are up.... my numbers are down..... I dont feel good...... I feel great. If anything ever happens that could be a sign of rejection I will post but until then....goodbye...and I hope to not post again!!!!
Here is the article:
I am not quite sure where to start. I wrote an entire post then thought of the repercussions of people reading what my thoughts were this week and then deleted it. It is very hard for me to share the deepest parts of my life with anyone and I think I really did share a lot since last fall. Although if you read my blog and you actually hang out with me weekly or daily you would know I only told 1/4 of my story as the rest was just too hard to share- like how sick I was really was- how close my kidney's were to shutting down completely.
So here I sit again, not wanting to share what is going on but needing to finish this blog and what I started as I am not a quitter. It isn't that I want to leave anyone wondering or guessing it is just I like my private life private, I have never been one to talk about my problems with even my friends. So I will end my blog with a brief idea of how my week has been and then share an article of a story written on us for the NATCA Insider. I think Courtney has written our story better then we could have said it ourselves. Not sure if I will ever blog again as I just don't know what it left to share.....
WELLLLL....Sunday was father's day and Alexa's birthday so I knew this was not a day I was going to relax. when I woke up in the morning I felt just as I had years past- like I had the flu and out of breath, Had to sit down in the shower. This was going to be a very long day. Needless to say I made it through and Monday wasnt much better. By Tuesday I was getting nervous and called my doctor. My creatine is up but not too high- so it is to be expected a bit. I went from .08 to 1.19 - right before surgery I was at 9.0 but I don't want to see this number rising ever as it is scary that the kidney could fail. And since my other kidneys are shriveled up as there was nothing left what would I be left with...3 kidney's that do not work!
OK- so took the girls to Hard Rock Pool today as Rumi was there with her family. I was not feeling well again but pushed through. Then I received a call from my Mom that my sister just found out her Creatine is rising also. I just about lost it, it would be one thing for me to be sick but if something happened to Sara I would never forgive myself or be able to live with what I have done. I text My Doctor at UMC Tucson which said this could be normal and she just needs to be tested again next week. So Sara is going to see my Kidney Doctor just to make sure.
And that's my freaking rollercoaster- even though things are probably fine and my chances of rejection are very very small it doesnt make it any easier to swallow the pill when they say the numbers are going up. And Sara can live a normal healthy life at 1.19 creatine but it still makes us both nervous that it increased in the first place!!
Still keeping my sense of humor and was able to joke around all night with Alexa and Jordan so that was my therapy. But I have to say I had many moments today I wanted to fall on someone's lap and just break down, however the opportunity never arises so I just have to keep going.
OK- now you see why I dont want to blog anymore- I could do this every week for months- my numbers are up.... my numbers are down..... I dont feel good...... I feel great. If anything ever happens that could be a sign of rejection I will post but until then....goodbye...and I hope to not post again!!!!
Here is the article:
A Member's Selfless Act to Help a Loved One
In an April issue of the NATCA Insider we covered the gracious actions of Las Vegas TRACON member Sara George, as she prepared for an upcoming transplant surgery in hopes of helping her sister, Molly. Molly had been diagnosed with a kidney disorder that soon escalated to full kidney failure, and in response, Sara selflessly donated one of her own. Now, several weeks post-operation, we are excited to announce the procedure’s overwhelming success.
On the early hours of Thursday, May 12, the sisters entered University Medical Center (UMC) Tucson side by side to begin the long transplant process. In pre-op rooms directly across from each other, the two sisters prepared for their separate surgeries, which would ultimately keep them in Tucson for a full week from start to finish. Sara headed out first for her laparoscopic surgery which would consist of four incisions, and early afternoon, the surgeons finished connecting Molly’s new kidney as Sara headed to the recovery room.
Following the operation, Sara’s pain was horrible, as pain killers and IV drips filled the hours. While one sister faced excruciating pain, the other faced the overwhelming struggle of increased daily maintenance. Though it meant more immediate work for Molly due to her new 27-pill dose of medication and extreme vulnerability to germs, it meant 100 percent improvement in the long-run once the healing concluded. “No matter what we have to go through during recovery, it is all more than worth it,” said Sara of the rough days that followed. “Making Molly’s quality of life return to a mostly normal state is so worth any pain involved in the process.”
It’s a “rock star kidney,” as the doctor’s refer to it, and Molly’s body adjusted perfectly. On Sunday, Sara was released from the hospital, followed on Monday by Molly. They relocated to a hotel where they stayed in recovery for a few more days before finally heading home to Vegas. Before leaving, they were even asked to attend a press conference for UMC’s transplant program, where they highlighted their experiences and learned from others with similar inspiring tales.
Considering the seriousness involved in such a procedure, during which complications and rejections from your body can so easily occur, the process couldn’t have gone much smoother. “Molly and I were so lucky that we were not only a match, but a perfect match, and on top of that, the transplant and our recoveries (so far) have been perfectly smooth,” Sara posted to her blog on her first night back in Vegas.
“I think when you are in the situation that we were in, you try not to think of the gravity of the situation. That death is a very real possibility. Now that we are one week out of transplant and my kidney is doing so well in Molly’s body I can really appreciate all of the odds we overcame and how blessed we are...”
Graced with the talent of the facility’s two best surgeons, they couldn’t have asked for a better experience, according to Sara. “Molly and I were able to do something really special and something that is going to have a very positive impact on both our lives,” she shared. “I will forever be grateful to have such an amazing strong sister. I am so happy that I could be the one to help her get better.”
Sunday, June 12, 2011
One Month!!!
Just to think it was one month ago today that I was just waking up from surgery with a new kidney in my body. Laying in a hospital bed in pain and trying to recover. Had my staples out- funny story but not to post- just know I had to drink wine to calm my anxiety before so you can imagine how I was in the Doctors office. At least Sara and Mom were there to watch...LOL.
This month how times have changed. Thursday was the last day of school at 12:45PM and we went to a pool party after which many screaming kids. It was the girls best friends bday party. So much fun and we stayed until 8pm and then the girls had their friends spend the night. Didn't finish the night until 1:00AM so it was a very long day but a lot of fun.
Friday the girls got ready to go to Wisconsin to see Deacon's family and Friday Night I went with Mom to the Summerlin Room and did a little gambling. I never gamble so it was fun to just get out and spend some time. Then I met Rumi at Hooters on the Patio- it was such a lovely night we sat until there probably a lot later then we should have.
5:00AM Saturday Morning drove Deacon and the Girls to the Airport- boy was I tired!!! But had to work a bit and get ready for Saturday night and Rumi's Birthday Dinner. Took her to Mon Ami Gabi- once again on the patio we had so much fun. Nice Wine and dinner and the weather was just perfect. After we went to meet friends at Blue Martini- (Not my favorite FYI) and then went to Yardhouse once again to the wee hours of the morning. But we were out on the patio with friends and something about the wonderful weather makes you want to enjoy the cool night air and not sleep.
Sunday morning we got up- way too early!! Rumi and myself went to meet the girls at the M Pool which was a lot of fun. Although I had to SPF with 100- kinda funny and not soak in the sun it was still really nice.
My scar shows a bit in my bikini- but not shocking so I can handle this. Stayed all day and then went to Hot and Juicy for Dinner- so much fun- our table was such a mess. Who would have thought 8 girls could make such a mess.
So as I sit back and reflect on my weekend and how tired I am I realize how thankful I am to have my life back. I am probably going a bit crazy with being busy and making plans but the girls are gone until next weekend and in 9 years I have never had time without them so I am really enjoying the ME time.
Busy week of work and still sorting through the Doctors bills and insurance and forms but it is a project I want to have done this week. I haven't even checked the mail this weekend because I just wanted 3 days without having to go through all the medical stuff and just ignore it. I am still going to stay active all week and enjoy my time. I am also going to start getting in shape again- although I cant exercise in my stomach I can start to try and tone the rest of my body. I can only say having anemia severely for a year has eaten away at a lot of my muscle and I need to regain my shape.
Tomorrow I see my kidney doctor and get my first refill on my prescriptions. I am curious to see how much this is gonna set me back :) Hope my numbers are still good and the kidney is working well!!
This month how times have changed. Thursday was the last day of school at 12:45PM and we went to a pool party after which many screaming kids. It was the girls best friends bday party. So much fun and we stayed until 8pm and then the girls had their friends spend the night. Didn't finish the night until 1:00AM so it was a very long day but a lot of fun.
Friday the girls got ready to go to Wisconsin to see Deacon's family and Friday Night I went with Mom to the Summerlin Room and did a little gambling. I never gamble so it was fun to just get out and spend some time. Then I met Rumi at Hooters on the Patio- it was such a lovely night we sat until there probably a lot later then we should have.
5:00AM Saturday Morning drove Deacon and the Girls to the Airport- boy was I tired!!! But had to work a bit and get ready for Saturday night and Rumi's Birthday Dinner. Took her to Mon Ami Gabi- once again on the patio we had so much fun. Nice Wine and dinner and the weather was just perfect. After we went to meet friends at Blue Martini- (Not my favorite FYI) and then went to Yardhouse once again to the wee hours of the morning. But we were out on the patio with friends and something about the wonderful weather makes you want to enjoy the cool night air and not sleep.
Sunday morning we got up- way too early!! Rumi and myself went to meet the girls at the M Pool which was a lot of fun. Although I had to SPF with 100- kinda funny and not soak in the sun it was still really nice.
My scar shows a bit in my bikini- but not shocking so I can handle this. Stayed all day and then went to Hot and Juicy for Dinner- so much fun- our table was such a mess. Who would have thought 8 girls could make such a mess.
So as I sit back and reflect on my weekend and how tired I am I realize how thankful I am to have my life back. I am probably going a bit crazy with being busy and making plans but the girls are gone until next weekend and in 9 years I have never had time without them so I am really enjoying the ME time.
Busy week of work and still sorting through the Doctors bills and insurance and forms but it is a project I want to have done this week. I haven't even checked the mail this weekend because I just wanted 3 days without having to go through all the medical stuff and just ignore it. I am still going to stay active all week and enjoy my time. I am also going to start getting in shape again- although I cant exercise in my stomach I can start to try and tone the rest of my body. I can only say having anemia severely for a year has eaten away at a lot of my muscle and I need to regain my shape.
Tomorrow I see my kidney doctor and get my first refill on my prescriptions. I am curious to see how much this is gonna set me back :) Hope my numbers are still good and the kidney is working well!!
Wednesday, May 25, 2011
I am Home!!!
I have been home for 1 full day now and I am loving it. Got to have lunch with Rumi and now I am getting settled into my new house :)
Still trying to take it easy and relax but it is so nice to see everyone again. School is almost out and my girls are going to WI for a week- I wish I could travel this summer but it looks like I need to stay in Vegas for awhile to make sure things are OK. What am I gonna do without kids for a week?? Should be too much FUN!!!
Here is Rumi and I :)
Still trying to take it easy and relax but it is so nice to see everyone again. School is almost out and my girls are going to WI for a week- I wish I could travel this summer but it looks like I need to stay in Vegas for awhile to make sure things are OK. What am I gonna do without kids for a week?? Should be too much FUN!!!
Here is Rumi and I :)
Sunday, May 22, 2011
I am ready!!!
I am so ready to get out of Tucson I just want to be home!! Hopefully tomorrow at clinic they will release me, as I have been asking since Thursday to be released back to Vegas. I feel really good just still a little sore and everyday my energy is coming back.
I just have to wait a few weeks to drive- I think I am going to wait until the staples come out at least.
Besides the press conference we have just been shopping, relaxing, watching movies and eating out. The one thing I have realized being away is that I really do love my life and have so much fun everyday. To be away from all of that just makes me sad so I can't wait to get back.
Here are a few photo of the press conference:
I just have to wait a few weeks to drive- I think I am going to wait until the staples come out at least.
Besides the press conference we have just been shopping, relaxing, watching movies and eating out. The one thing I have realized being away is that I really do love my life and have so much fun everyday. To be away from all of that just makes me sad so I can't wait to get back.
Here are a few photo of the press conference:
Waiting for the conference |
Talking with PR and Transplant Coordinator |
Chief of Surgery and My Surgeon :) |
My Doctors |
Wednesday, May 18, 2011
First Drink...well fake drink :)
Finally got cleaned up and went for a drink by the pool. Well that is if you count a virgin pina colada :)
But it still felt nice. Each day I feel better and better and can't wait for the day I feel like I am healed.
My neck is all bruised from the catheter and it still hurts but I hope this will heal over time. It was nice to hang out with the girls and Dad before Sara and Collette leave tomorrow.
Here are a few photo's of our outing. Early day tomorrow- doctors at 7:30AM then the press conference at 11:00AM.
But it still felt nice. Each day I feel better and better and can't wait for the day I feel like I am healed.
My neck is all bruised from the catheter and it still hurts but I hope this will heal over time. It was nice to hang out with the girls and Dad before Sara and Collette leave tomorrow.
Here are a few photo's of our outing. Early day tomorrow- doctors at 7:30AM then the press conference at 11:00AM.
Tuesday, May 17, 2011
At the Hotel
Well I am finally at the hotel relaxing and showered. What a relief to get out all the IV's and catheters. I am bruised and have holes all over my body from all the shots they gave me each day for the blood clots but I know I will heal. I am still very tired when I walk but know I will build up my energy. I am going to start working today and right now I am by the pool eating lunch :)
Thanks so much for all the thoughts and prayers and text's and phone calls. Sorry if I can't respond but it is very tiring to do almost anything right now!!
The only thing different I have noticed is I feel that I look different- my face and body is so foreign to me it is weird. Maybe this is just in my head but I feel I am completely changed. Here are a few photo's of recovery and the awful catheter that was in my vein in my neck and leaving the hospital and me at the pool today. I would usually never ever ever let a photo of me without my makeup and hair done be posted online but I figured what the hell- this is what I look like after 4 days of not showering :)
Yes that was inside my neck!!! |
Working by the pool |
Saturday, May 14, 2011
Going home
Hurray! Sara gets to leave today and I get to leave on Monday. Right now we are going to the hotel to rest and not sure when we will be cleared to travel. But it will be so much better to get out of the hospital!! Plus I can nap by the pool now instead of the hospital bed.
Here are a few photos of sara's visit to see me and her kidney!!
Friday, May 13, 2011
Visiting hours
Here is my aunt linda and me in the hotel suite
Sara came down in herwheelchair to visit me and her kidney. It was good to see both of us up and healing on day 2. Hopefully sara gets to go to the hotel by sat. Or sun. And i get to go by mon. Or tue.
The cheif of surgery invited us to a party this week for some banquet for patients. That should be fun.
If we both keep on this track we wil be back to vegas in just a week or two!!
Ok going to watch a movie!!
Thursday, May 12, 2011
12:40 PST Update
The surgeons are finishing connecting Molly's new kidney. It will be another hour or so before she is ready to go to the recovery room.
Sara was just moved into recovery. She is in severe pain and looks like she went through major surgery or something. It is a very difficult thing to see her suffer. Did I mention the doctor said a little pain? They are working on her "minor" pain issues. She should be moved to her room in an hour. Don't think she will be out dancing tomorrow night.
Sara was just moved into recovery. She is in severe pain and looks like she went through major surgery or something. It is a very difficult thing to see her suffer. Did I mention the doctor said a little pain? They are working on her "minor" pain issues. She should be moved to her room in an hour. Don't think she will be out dancing tomorrow night.
Blood Vessels Being Attached & Sara's Surgeon Update
The surgeons are attaching Molly's blood vessels to her new kidney. They said it was good to take the left kidney out of Sara because her heart is so big it could use more room (which explains how she could do such a selfless act).
Sara's surgeon just talked to Jane and me. He said everything went very well. Her kidney looked great. She will have a little pain (doctor talk for excruciating pain) tonight and she should be able to get up and walk around tomorrow. Looks like Sara will be 100% in a short period of time and down the line back scoring goals on the hockey rink (just no enforcer duties). Sara's surgeon (Dr. G) is really cool and he used to do kidney transplants at the University of Minnesota. His last comment was, "she should be fine. I just hope she doesn't fall asleep at work." He then walked away laughing. Everybody is a comedian.
Sara's surgeon just talked to Jane and me. He said everything went very well. Her kidney looked great. She will have a little pain (doctor talk for excruciating pain) tonight and she should be able to get up and walk around tomorrow. Looks like Sara will be 100% in a short period of time and down the line back scoring goals on the hockey rink (just no enforcer duties). Sara's surgeon (Dr. G) is really cool and he used to do kidney transplants at the University of Minnesota. His last comment was, "she should be fine. I just hope she doesn't fall asleep at work." He then walked away laughing. Everybody is a comedian.
10:55 PST
Operating room just called. Sara's kidney was just taken out of her body and is now being placed in Molly. Sara should be in recovery within 45 minutes. Molly reboots her system in about 2 hours and will rediscover her former energy very soon.
Hang on world: Here comes Molly with Sara's supercharged kidney!
Day Of Surgery
Wednesday, May 11, 2011
Thursday, May 5, 2011
Tucson and Back Again
I really don't feel like blogging the next week. I am overwhelmed with emotion and afraid if I blog it might be really raw- even more then I would like.
Please read Sara's blog for updates and what we did in Tucson.
Sarajaynegeorge.blogspot.com
Just to recap- we are ready to go next week. They said I had to stay down there until June 4th but now they are thinking I might be able to go home 2 weeks after and just do my post op in Vegas. My sister is a perfect cross match- less then 25% of people get this and it usually happens in twins.
I feel so blessed that she is giving me a perfect kidney- they said this kidney could last my entire life without having to have a second transplant- which would have happened if it was not a perfect crossmatch.
My girlfriend who is a teacher text me a photo of Jordan on her field trip today- I wanted to cry. I was only gone for 2 days and already missing so much- how I am going to do this 2-3 weeks. I do like my adult time but away from my kids for weeks- it just makes me sad!!
Please read Sara's blog for updates and what we did in Tucson.
Sarajaynegeorge.blogspot.com
Just to recap- we are ready to go next week. They said I had to stay down there until June 4th but now they are thinking I might be able to go home 2 weeks after and just do my post op in Vegas. My sister is a perfect cross match- less then 25% of people get this and it usually happens in twins.
I feel so blessed that she is giving me a perfect kidney- they said this kidney could last my entire life without having to have a second transplant- which would have happened if it was not a perfect crossmatch.
My girlfriend who is a teacher text me a photo of Jordan on her field trip today- I wanted to cry. I was only gone for 2 days and already missing so much- how I am going to do this 2-3 weeks. I do like my adult time but away from my kids for weeks- it just makes me sad!!
Tuesday, May 3, 2011
Amazing...
For those that have not read my sisters blog it is worth checking out. She is such an amazing person!!! The link is at the top of my blog...sarajayne...
Leaving tomorrow at 6am..still havent even packed. I should be doing a million things tonight but might just go to rounders instead. Nothing like escaping my duties and just having fun :)
Still havent slept this week but i figure i will make up for that after surgery. Wish us luck for our testing tomorrow!!!
Monday, May 2, 2011
Can't sleep....
Sitting here every night for hours and hours in bed just thinking about the surgery and how bad I hate my cath cause it still hurts. I think i sleep about 2 hours a night right now.
So....dialysis....well....it was awful!!! They took too many fluids which made me very sick. My bones hurt so bad I was shaking. This started about 20 minutes in and I lasted 1 hour and 15 minutes. It was some of the worse pain ever..made my catheter pain feel like a paper cut and giving birth was a joy compared to this pain.
So now I sit awake wondering do I try it again tomorrow? Or just skip it and see what the surgeons say on Wed when we are in Tucson for our pre testing. Such a struggle..not sure what the outcome will be...depends how strong I really am to go again and risk the pain.
I am so upset with myself for opting for dialysis in the first place and not sticking it out the 2 weeks.
Cant wait to be on the plane on wed....got my new bikinis to lay by the pool...in the 95 degree weather :)
Side note...once again on cell blogging so ignore typing and errors!!
Thursday, April 28, 2011
What was I thinking???
Note to self: It is better to be sick then have a hemocath in your neck.
OUCH!!!!!!! Today I am regretting my choice. 2 weeks from today I will be on the operating table. It is amazing the pain your body can endure. And yes like Chuck said- the next time you complain about having allergies I am not going to give you any sympathy...do you see the tube in my neck?
PS....pray for the victims of the tornado's...so sad!! so sad!!!
OUCH!!!!!!! Today I am regretting my choice. 2 weeks from today I will be on the operating table. It is amazing the pain your body can endure. And yes like Chuck said- the next time you complain about having allergies I am not going to give you any sympathy...do you see the tube in my neck?
PS....pray for the victims of the tornado's...so sad!! so sad!!!
Tuesday, April 26, 2011
Get out the bikini!!!
Well it seems I am going to be rockin a new body in my bikini this weekend. Because I broke down and got the haemocath put in my neck/chest. I was so sick the past couple of days- getting a catheter in my neck sounded better then being sick.
So this morning I went and had it done. It hurts- not too bad but the top part has stitches to hold the tube so the stitches really hurt. Now I get to do dialysis on Friday, I hope this makes me feel better because there are many things I want to do this weekend- including going out for a bit :)
We like to hang at the pool a lot so I am not giving that up- just getting a new bikini that fits the tubes.
I know at my friends pool's it wont be a big deal but if we go to the apartment pools or hotel pools I might get a few looks but I think I really don't care. I have to wear this tube until June so I might at well just make it an accessory :)
Now here is the main question- it hurts to wear regular shirts or undergarments (trying to be a lady) so I really can only wear halter tops the next week until the stitches heal. Do I just wear the tops and let the tubes hang out? Even at school and scare the kids? Or do I wear a small soft cardigan to cover it up- even in 90 degree weather? What to do what to do....
Here are a few photo's to see what I am talking about!! Ignore the orange color from the iodine. Can you see the tube under my skin??? YUCK..not very sexy at all.
So this morning I went and had it done. It hurts- not too bad but the top part has stitches to hold the tube so the stitches really hurt. Now I get to do dialysis on Friday, I hope this makes me feel better because there are many things I want to do this weekend- including going out for a bit :)
We like to hang at the pool a lot so I am not giving that up- just getting a new bikini that fits the tubes.
I know at my friends pool's it wont be a big deal but if we go to the apartment pools or hotel pools I might get a few looks but I think I really don't care. I have to wear this tube until June so I might at well just make it an accessory :)
Now here is the main question- it hurts to wear regular shirts or undergarments (trying to be a lady) so I really can only wear halter tops the next week until the stitches heal. Do I just wear the tops and let the tubes hang out? Even at school and scare the kids? Or do I wear a small soft cardigan to cover it up- even in 90 degree weather? What to do what to do....
Here are a few photo's to see what I am talking about!! Ignore the orange color from the iodine. Can you see the tube under my skin??? YUCK..not very sexy at all.
Saturday, April 23, 2011
May 12th
Looks like we are leaving May 9th for a May 12th surgery. Just waiting for UMC to send the plane tickets so I know what flight we are on. Booked the Radisson right by the hospital for family and where we will stay after we are let out. They gave us a great transplant room rate so it was a better deal then most other hotels.
I really don't feel good again so I am going to decide on Monday if I am going to just go on bed rest for the next 2 weeks or if I am going to get emergency dialysis in my neck this week. I think I am leaning towards the dialysis. I never wanted it but I can't take the pain anymore.
Not sure when I will post again as it is getting harder each day to just get out of bed. I am just trying to hold on for the surgery.
They will take Sara's kidney first which should be about 3-4 hours of surgery start to finish then they will operate on me and put her kidney in- not sure how long it takes but I think I am longer then her. Sara should be in hospital for 2 days but then she has to stay at hotel and come back to hospital for check ups for a few days after. Within a week she will be back in Vegas but on restriction and can't even drive for a few weeks. I will be in hospital for 4-5 days and then in hotel for up to 10 days they are thinking depending on how well Sara's kidney responds. I can be in Tucson for up to 8 weeks but they think 1-2 weeks and I will be released back to Vegas.
My family will post on my blog and put photo's hour by hour during the surgery so everyone can follow along with what is going on. So be sure to mark your calendar for May 12th to check back on the blog to see how the operation is going :) Wish us luck! I can't wait to not be sick anymore. Look out world...Molly is coming back!
I really don't feel good again so I am going to decide on Monday if I am going to just go on bed rest for the next 2 weeks or if I am going to get emergency dialysis in my neck this week. I think I am leaning towards the dialysis. I never wanted it but I can't take the pain anymore.
Not sure when I will post again as it is getting harder each day to just get out of bed. I am just trying to hold on for the surgery.
They will take Sara's kidney first which should be about 3-4 hours of surgery start to finish then they will operate on me and put her kidney in- not sure how long it takes but I think I am longer then her. Sara should be in hospital for 2 days but then she has to stay at hotel and come back to hospital for check ups for a few days after. Within a week she will be back in Vegas but on restriction and can't even drive for a few weeks. I will be in hospital for 4-5 days and then in hotel for up to 10 days they are thinking depending on how well Sara's kidney responds. I can be in Tucson for up to 8 weeks but they think 1-2 weeks and I will be released back to Vegas.
My family will post on my blog and put photo's hour by hour during the surgery so everyone can follow along with what is going on. So be sure to mark your calendar for May 12th to check back on the blog to see how the operation is going :) Wish us luck! I can't wait to not be sick anymore. Look out world...Molly is coming back!
Thursday, April 21, 2011
On the list!!!
UMC Las Vegas called and even though it doesn't mean much I am on the donor list!!! YEAH :) That means I am good to go for surgery. And if anything happens and Sara can't donate I am now on the waiting list for a cadaver kidney.
Feel like total crap again today! That shot to bring up my hemoglobin is not working at all, I have no energy.
Will write tomorrow when I meet with the surgeon.
Feel like total crap again today! That shot to bring up my hemoglobin is not working at all, I have no energy.
Will write tomorrow when I meet with the surgeon.
Wednesday, April 20, 2011
Holding On.....
Had insomnia- didnt fall asleep until 4:30AM. Woke up today feeling awful! Everyday it gets worse and worse...I hope I can hold on 2 more weeks :( I know I don't post often about how I feel but it is usually like CRAP.
That's my post today! At least the sun is shining so another day of sitting outside for spring break!!!
That's my post today! At least the sun is shining so another day of sitting outside for spring break!!!
Tuesday, April 19, 2011
I'm leaving on a jet plane...
don't know when I'll be back again!! Hopefully May 12th, that is the projected date. We have to go down 1 week prior so they can run mutiple tests before the surgery. My sister, me and my friends in Tuscon for a few days before we do surgery.....CRAZY :)
Sara and I are meeting with the Chief of Transplant Surgery on Friday at 9:00AM, I hope to get all my questions answered.
Getting my shot tomorrow to bring my hemoglobin level up a bit- it is in my stomach which I HATE, but learning to just suck up any pain and deal with it.
Went to the pool again today! Sorry MN peeps....Spring Break is so much fun! Work a few hours, go to pool the rest of the day with friends and hang out at night with friends. I felt like crap today so it was a good day to just lay in the sun all day.
Tomorrow is party with teachers- which are always fun to go and have girl time. If it is nice I will work on my tan again before we go- Heather, Rumi and I are going to be so dark before break is over!!!!
Sara and I are meeting with the Chief of Transplant Surgery on Friday at 9:00AM, I hope to get all my questions answered.
Getting my shot tomorrow to bring my hemoglobin level up a bit- it is in my stomach which I HATE, but learning to just suck up any pain and deal with it.
Went to the pool again today! Sorry MN peeps....Spring Break is so much fun! Work a few hours, go to pool the rest of the day with friends and hang out at night with friends. I felt like crap today so it was a good day to just lay in the sun all day.
Tomorrow is party with teachers- which are always fun to go and have girl time. If it is nice I will work on my tan again before we go- Heather, Rumi and I are going to be so dark before break is over!!!!
Monday, April 18, 2011
OK Then!
Still waiting...just received this email from UMC so I guess we still will not know anything for a bit.
Received Sara's Angio and have given it to the surgeons for viewing. We will let you know what they think as soon as we can.
Thanks!
Thanks!
On sunday we hung out at Sara's Pool all day which was a blast! If we can't take vacation this year at least we can still act like we are on vacation! It is spring break and the kids are having so much fun and so are the mom's :) Here is Chuck (sara's best friend) and Rumi and me at the pool. And the kids! And us Girls!
Wednesday, April 13, 2011
Whew!
Good day today!! Oh how thankful I am that I do not need to go and get Emergency Dialysis this week.
Mom sent Sara's Angio Fedex to Tuscon so hopefully when they receive it tomorrow they will look at it and give us a date.
Thank you so much for all the letters, emails and donations. I don't have enough energy to thank everyone individually right now but please know from the bottom of my heart I am humbled. All this for little old me? It just blows my mind how much love and support people are sending- a lot that I do not even know. Air Traffic Controllers are some of the most giving and loving people!!
Sara Jayne is not only my hero but she is now saving my life. I wish I could go back to Teenage Sara and tell her when things got hard that not only does IT GET BETTER, but you are going to save my life one day.
I love the saying from the movie flipped- something like- everyone is like a light bulb and once in a blue moon you find an iridescent bulb that shines brighter then everyone else- she is that! She touches everyone she meets and her witty and smart ass attitude is something that makes me laugh. I am thankful we have become even closer during this process and after the transplant I can't wait to lay in her pool and relax. I couldn't think of another person I would want to go through the pain of surgery and recovery with than her!
Mom sent Sara's Angio Fedex to Tuscon so hopefully when they receive it tomorrow they will look at it and give us a date.
Thank you so much for all the letters, emails and donations. I don't have enough energy to thank everyone individually right now but please know from the bottom of my heart I am humbled. All this for little old me? It just blows my mind how much love and support people are sending- a lot that I do not even know. Air Traffic Controllers are some of the most giving and loving people!!
Sara Jayne is not only my hero but she is now saving my life. I wish I could go back to Teenage Sara and tell her when things got hard that not only does IT GET BETTER, but you are going to save my life one day.
I love the saying from the movie flipped- something like- everyone is like a light bulb and once in a blue moon you find an iridescent bulb that shines brighter then everyone else- she is that! She touches everyone she meets and her witty and smart ass attitude is something that makes me laugh. I am thankful we have become even closer during this process and after the transplant I can't wait to lay in her pool and relax. I couldn't think of another person I would want to go through the pain of surgery and recovery with than her!
Tuesday, April 12, 2011
Oh Crap!
Having another bad day. I have now promised myself if I have 2 bad days in one week that I will go to the ER for emergency dialysis in the neck. So please please please let this be the only day this week!!
I am now OK with having dialysis if I need it, I just can't figure out how I am going to get to and from the dialysis center and take care of my kids a few times a week. This just seems so overwhelming and to try and still work on top of it, I was hoping to avoid this all together.
I am trying to still work but it is becoming less and less that I am able. I have worked full time since I was 14 and never even went more then a few weeks without a job. This is very difficult to let this part of me go but I have to take care of my health now. I look forward to the days I can work again and do sales and go to lunch with clients. This is one of my main goals I want to achieve after transplant.
Sara did her angio- we will be sending copy of xray to Tuscon and hopefully the surgeons will give us a date. I am at 7.99 creatine which is not good, I don't have much time left being able to function without dialysis full time!!
I am now OK with having dialysis if I need it, I just can't figure out how I am going to get to and from the dialysis center and take care of my kids a few times a week. This just seems so overwhelming and to try and still work on top of it, I was hoping to avoid this all together.
I am trying to still work but it is becoming less and less that I am able. I have worked full time since I was 14 and never even went more then a few weeks without a job. This is very difficult to let this part of me go but I have to take care of my health now. I look forward to the days I can work again and do sales and go to lunch with clients. This is one of my main goals I want to achieve after transplant.
Sara did her angio- we will be sending copy of xray to Tuscon and hopefully the surgeons will give us a date. I am at 7.99 creatine which is not good, I don't have much time left being able to function without dialysis full time!!
Sunday, April 10, 2011
Quick Update
OK Just a quick update to stop all the text messages asking what is going on...HA HA. Sara is doing her EKG Monday and then on Tuesday she is doing her Angio to look at which kidney they will take. After she does her Angio at Steinberg she will get a copy of the disk and fedex it to Tuscon. The surgeons will then look at her disk and decide that all looks good hopefully.
Then they should be able to get us a date. In the meantime- the top surgeon is coming to Las Vegas on April 21st and is going to meet with me so I can have all my questions answered.
I am not sure when exactly I will be given the date but my clinic worker has advised me it should be the first part of May for the surgery.
Also on May 4th I have my appointment to place the tube in my stomach and if I am not in Tuscon at this point I have to get it in...BOOOOOOOO!!!!!
So spring break is next week- since we can't take vacation this year I am going to try and take the girls to the park and fun things each day that are cheap. And of course have Mommy time with my friends and go hang at the Cosmo Pool.
Then they should be able to get us a date. In the meantime- the top surgeon is coming to Las Vegas on April 21st and is going to meet with me so I can have all my questions answered.
I am not sure when exactly I will be given the date but my clinic worker has advised me it should be the first part of May for the surgery.
Also on May 4th I have my appointment to place the tube in my stomach and if I am not in Tuscon at this point I have to get it in...BOOOOOOOO!!!!!
So spring break is next week- since we can't take vacation this year I am going to try and take the girls to the park and fun things each day that are cheap. And of course have Mommy time with my friends and go hang at the Cosmo Pool.
Tuesday, April 5, 2011
May maybe??
Just talked to UMC Tuscon and things are moving. I finished all my tests so I am ready to go. Sara has an ekg on Monday and then an angio (still to be scheduled). The angio is to look at which kidney they are going to take. After that test the board of doctors reviews our case and if all looks good they approve us. Once approved we can have the transplant in one to two weeks. So it looks like Tuscon in May sometime.
I am very excited to start the next chapter of my life but need to be patient. I am also sad because my kids are going to be without their mom for 2 to 3 weeks. I hope this won't be too hard on them, Jo already asked for me to bring a big suitcase so she can hide in it. Alexa isn't saying much but has told me that I always ruin their plans when I get sick. I don't want her to be angry over this but she is already feeling very upset. I try to give her lots of love but it isn't enough, she process's everything and if life isnt going exactly how she thinks it should be she gets very upset.
All of this has made me feel bad as a mother. I try to give them a fun loving life and it still is not enough. When Alexa told me I ruin everything it broke my heart. I think is this really too hard on her? Or is she just spoiled going to the park and movies and dinner and disney all the time that when we have to sit at home she is just being spoiled. I wish someone could give me the right answer. I have never spoiled my kids with material things but I do over indulge in the time I spend with them and i think maybe this will make her stronger. I guess I will have a lot of time to think about my relationship with my kids when I am away.
Monday, April 4, 2011
More updates...
While I am sitting in between appointments I thought I would recap last week.
Thursday I met with general surgery doctors. My doctor was a kid, maybe 18 years old. He told me he was a PA student so that explained the age, but when he went to examine me I thought, is this even legal? I felt like it just wasn't right for him to see my stomach and chest...LOL.
Anyways after doogie howser left the doctor came in and said 2 to 3 weeks for an appointment for the tube to be placed. I told him my story of being so close to the transplant so he assured me he would try and drag his feet so we can avoid the tube.
Then Friday I had both girls A honor roll awards. Jordan's was fine and I even left a bit early because I was not feeling well. By the time Alexa's had come around I was full blown sick. I have about 1 to 2 bad days a week and Friday happened to be my day. I feel weak and light headed and like I have the flu. So as I am sitting trying to pay attention and act normal all I can think about it 1. Am I going to faint. 2. Should I go to the ER for dialysis 3. My feet are so swollen they look like miss piggy!! Everytime I get sick I need to decide if it is bad enough to start dialysis or if I think it will pass. It was so hard to sit there and try to be myself when I was dying inside.
So...after school we went shopping and then to dinner with the besties (that is what the girls call ava, rumi and izzy) by the time we got home I could not walk and was so sick with my stomach. It feels like you have the flu extremely bad without ever throwing up.
I went to bed thinking this is it...I am going on dialysis tomorrow. Well what do you know???....I woke up Saturday feeling great! By 9am I had already been shopping and by 10am we were laying at the pool with good friends. Stayed all day long and then went out at night until 130am. I was so thankful to have passed that phase again without dialysis.
Let's just see how my bad day is this week.....
Ignore my bad grammar...on my cell phone and trying to type fast before the nurse calls my name!!
Thursday I met with general surgery doctors. My doctor was a kid, maybe 18 years old. He told me he was a PA student so that explained the age, but when he went to examine me I thought, is this even legal? I felt like it just wasn't right for him to see my stomach and chest...LOL.
Anyways after doogie howser left the doctor came in and said 2 to 3 weeks for an appointment for the tube to be placed. I told him my story of being so close to the transplant so he assured me he would try and drag his feet so we can avoid the tube.
Then Friday I had both girls A honor roll awards. Jordan's was fine and I even left a bit early because I was not feeling well. By the time Alexa's had come around I was full blown sick. I have about 1 to 2 bad days a week and Friday happened to be my day. I feel weak and light headed and like I have the flu. So as I am sitting trying to pay attention and act normal all I can think about it 1. Am I going to faint. 2. Should I go to the ER for dialysis 3. My feet are so swollen they look like miss piggy!! Everytime I get sick I need to decide if it is bad enough to start dialysis or if I think it will pass. It was so hard to sit there and try to be myself when I was dying inside.
So...after school we went shopping and then to dinner with the besties (that is what the girls call ava, rumi and izzy) by the time we got home I could not walk and was so sick with my stomach. It feels like you have the flu extremely bad without ever throwing up.
I went to bed thinking this is it...I am going on dialysis tomorrow. Well what do you know???....I woke up Saturday feeling great! By 9am I had already been shopping and by 10am we were laying at the pool with good friends. Stayed all day long and then went out at night until 130am. I was so thankful to have passed that phase again without dialysis.
Let's just see how my bad day is this week.....
Ignore my bad grammar...on my cell phone and trying to type fast before the nurse calls my name!!
Saturday, April 2, 2011
Love the weekend!!
Sara is moving on to next round of tests...ekg...chest xray.etc.
It has been a busy but great weekend!! Perfect weather and laying at the pool all day with good friends. The girls are pooped out but I still have energy so a trip to rounders sounds good.
Here is jo after a long day of swimming.
Tuesday, March 29, 2011
WHAT????
So I went to give blood again today and they were running about 10 tests on me for UMC Las Vegas. I am in the Quest Lab and the front desk girl (who knows me since I am there every week) tells me that she can't do 2 of the test because it is spinal fluid and they have to do a spinal tap. It was a quiet waiting room and you could hear about 5 people give an UGH all at once. We all started laughing and I said "Why did you tell me that?" she said "I have to tell you it is in the spine." So here I was thinking Oh man, every time I think I am handling things really well I get another curve ball.
I have just come to terms with accepting a tube in my stomach in the next month and now I have to process getting a needle in my spine? It was bad enough doing it twice during labor but again?? REALLY?? Come on, give me a break!!!!
Sometimes I think I just want to break down and crawl into a ball and cry. But I do not let myself get down- I am not sure if I would even know how to break down and cry at this point. I have to keep going for my kids and I have to keep working to make money until I can't work anymore.
It is hard to have to keep letting go of things- I can't exercise right now because I get winded and my body isn't toned which drives me nuts- I can't eat the foods I want- or go dancing- or keep the house in perfect condition like I want- I can't take my kids to disneyland or any mini vacation anymore-- I can't work and do sales like I want- I can't make long term plans or make future plans- all of this drives me NUTS!!!!!
Ok done with my pity party! Doug is a guy who had a transplant the end of Feb. in Pittsburgh and is coming back to Vegas this week, I can't wait to go out to dinner and hear all about his experience. Most of the patients are elderly so it will be so nice to talk to someone in their 20's who has gone through this!! I look forward to the day I get to post I am on my way back to Vegas! Congrats DOUG! I am so happy for you :)
PS- still no word on UMC Tuscon and Sara....BOOOO they need to move faster!!
I have just come to terms with accepting a tube in my stomach in the next month and now I have to process getting a needle in my spine? It was bad enough doing it twice during labor but again?? REALLY?? Come on, give me a break!!!!
Sometimes I think I just want to break down and crawl into a ball and cry. But I do not let myself get down- I am not sure if I would even know how to break down and cry at this point. I have to keep going for my kids and I have to keep working to make money until I can't work anymore.
It is hard to have to keep letting go of things- I can't exercise right now because I get winded and my body isn't toned which drives me nuts- I can't eat the foods I want- or go dancing- or keep the house in perfect condition like I want- I can't take my kids to disneyland or any mini vacation anymore-- I can't work and do sales like I want- I can't make long term plans or make future plans- all of this drives me NUTS!!!!!
Ok done with my pity party! Doug is a guy who had a transplant the end of Feb. in Pittsburgh and is coming back to Vegas this week, I can't wait to go out to dinner and hear all about his experience. Most of the patients are elderly so it will be so nice to talk to someone in their 20's who has gone through this!! I look forward to the day I get to post I am on my way back to Vegas! Congrats DOUG! I am so happy for you :)
PS- still no word on UMC Tuscon and Sara....BOOOO they need to move faster!!
Thursday, March 24, 2011
So Bad.....
My kidney doctor pushed my appointment back to Friday. I went to give blood and my veins have been stuck so much they were not able to give blood so we had to wait and try again. Hopefully my numbers are not too bad tomorrow.
On the bight side-I know this is bad...but my general surgery appointment was re-scheduled until next week. I know I should not be happy to have the dialysis pushed back but I am. This means a few more weeks before we get ready. My appointment next week is just a consultation so I still have time before we do the tube into my stomach.
Oh well- I am still going out on Friday even if it isn't my last weekend of freedom I am going to pretend it is...maybe I will order a different type of salad for dinner and mix it up a bit...LOL.
On the bight side-I know this is bad...but my general surgery appointment was re-scheduled until next week. I know I should not be happy to have the dialysis pushed back but I am. This means a few more weeks before we get ready. My appointment next week is just a consultation so I still have time before we do the tube into my stomach.
Oh well- I am still going out on Friday even if it isn't my last weekend of freedom I am going to pretend it is...maybe I will order a different type of salad for dinner and mix it up a bit...LOL.
Tuesday, March 22, 2011
Groundhogs Day
I feel like it's Groundhogs Day again and again...start my week, give blood, give blood again, visit the doctor, work, visit another doctor, work, get sick, work, hang out with my kids and friends and start the week again.
I am going CRAZY!!! I wish I could take a vacation :) So to sum up my week I have given blood at UMC to get on the donor list for a cadaver. Hopefully I will be on the list in the next few weeks so my back up plan is in place.
UMC Tuscon is moving but slow. We are still waiting to hear if Sara is a go for donor and waiting for a date for transplant.
In the meantime since my kidneys are at about 7% I have to start dialysis. So on Thursday I meet with my kidney doctor to review my numbers- a weekly visit. Then on Friday I meet with General Surgery to have my consultation to get the catheter in my stomach for PD, which is a form of dialysis 10 hours a day 7 days a week. Once I get the routine I will be able to do this from home at night. But it still grosses me out to think I have to have a tube put in my stomach.
I can't wait for Friday to have a little ME time and go out with Rumi. It will be my going away party to my normal body and freedom of not being tied to dialysis.
Last weekend was spent with the kids and friends all weekend. We did a lot of eating out- which isn't as much fun for me but thank goodness most places have Caesar Salad so I can at least order something!!
Here are a few photo's of our fun weekend and past week.
I am going CRAZY!!! I wish I could take a vacation :) So to sum up my week I have given blood at UMC to get on the donor list for a cadaver. Hopefully I will be on the list in the next few weeks so my back up plan is in place.
UMC Tuscon is moving but slow. We are still waiting to hear if Sara is a go for donor and waiting for a date for transplant.
In the meantime since my kidneys are at about 7% I have to start dialysis. So on Thursday I meet with my kidney doctor to review my numbers- a weekly visit. Then on Friday I meet with General Surgery to have my consultation to get the catheter in my stomach for PD, which is a form of dialysis 10 hours a day 7 days a week. Once I get the routine I will be able to do this from home at night. But it still grosses me out to think I have to have a tube put in my stomach.
I can't wait for Friday to have a little ME time and go out with Rumi. It will be my going away party to my normal body and freedom of not being tied to dialysis.
Last weekend was spent with the kids and friends all weekend. We did a lot of eating out- which isn't as much fun for me but thank goodness most places have Caesar Salad so I can at least order something!!
Here are a few photo's of our fun weekend and past week.
At 5 guys before Dad Left for airport. |
At Grimaladi's playing with pizza dough. |
At Jason's Deli- Jo with her stache |
At Sweet Tomatoes with Besties! |
Girls at Rango! |
Future Bunnies!! |
Alexa's teacher has her hooked on NCAA :) |
Friday, March 18, 2011
Not Yet...
No news yet- just waiting on Sara's next test results next week. I am seeing my kidney doctor weekly now so on Thursday I will know again if I get to go another week without dialysis. I am feeling good and getting back to routine which is nice. Once again so glad it is the weekend!!!!
Dad went back to Minneapolis tonight, so I hope he enjoyed the warm weather while he was here!
Photo of the girls and I at dinner with Dad before we took him to the airport. Jordan's allergies were killing her so don't mind the sad face!!
Dad went back to Minneapolis tonight, so I hope he enjoyed the warm weather while he was here!
Photo of the girls and I at dinner with Dad before we took him to the airport. Jordan's allergies were killing her so don't mind the sad face!!
Sunday, March 13, 2011
Free at last!!!
So yesterday my neph (kidney doctor) said if my levels go up I would need emergency dialysis. This morning they went up .10 so I knew it would be a judgement call.
Since I feel good and not sick he is releasing me back into the wild!!! Although I have to be monitored daily with blood tests and meetings that is only 1 hour each morning so I will take it!
I am hoping to avoid dialysis all together and go right into transplant but I will let you know :)
2 of my iron infusions are done...just need 3 more! Here is me during my iron treatment.
I also want to say thank you to: jane, garry, deacon, alexa, jordan, pat, gary, rumi, holly, khamla, stefan, elisa, collette, sara, ethan, mike, rhian and many others for the flowers, magazines, stopping by for gatherings in my room, going to my dinner party even though i couldnt be there!!! And thanks to all my girls back home who reached out by phone :)
Friday, March 11, 2011
Oh Boy.....
Well this might be it! Tuscon may be around the corner. To make a long story short my kidney's are getting worse so I have to stay in the hospital another day to see if it was the blood pressure medicine that made them get worse or if they are shutting down for good.
There are so many possibilities and options I really can't list all the outcomes, all I can say is we need to wait a few days to see what the plan is.
At least I have Internet now!!!!!
There are so many possibilities and options I really can't list all the outcomes, all I can say is we need to wait a few days to see what the plan is.
At least I have Internet now!!!!!
Thursday, March 10, 2011
This resort sucks!!
I am going to have to find the manager and complain! The room service is too slow, housekeeping comes in at all hours and the movie selection isn't very good. At least i was upgraded to a room with a view of tjmaxx...how lucky is that!!
Ok really the staff has been great! Food really does sux. They are keeping me one more night to make sure i am stable. Still no dialysis as we are holding off for transplant. Doctor said if saras test come back good it should only be a few weeks! Cant wait to be back to a normal life!
Also there is an older lady who has been crying since last night...she sounds like a few month old baby so i get to listen to that half the time. I almost want to go hold her and tell her it is going to be OK. Instead i put on beats by dre headphones! Thanks dad :)
Look who came to see me! Sorry about my bad grammar...on my cell typing.
Wednesday, March 9, 2011
Hells Bells
Blood pressure spiked and ended up in ER. They can get it to lower so I have to stay the night at this lovely resort with 5 star food. I am so sick of all of this and just want it to be over! On the bright side they said I could have had bleeding in my brain from the pressure but my cat scan came back clear!
Tuesday, March 8, 2011
Eye of the Storm.....
I knew it would get worse before it got better but I was not prepared for all the curve balls being thrown my way.
After my doctors appointment today I thought, I am not posting on my blog, it is too personal and I am not letting anyone know I am getting worse as I feel it is a sign of weakness. But after sitting on it a couple of hours I have realised I can put my ego aside and not always be the happy go lucky strong person and be OK with getting sick. And I also committed to sharing my story so why stop now.
Hell, where do I start? I am at 9%- nothing new I expected it to be lower and my creatine is at 5.85 - which I was OK with hearing that awful number. I have to go to my regular doctor and get a B12 shot on Thursday- I can't remember why but I must need it. Now the wrench in my plans- I am severely anemic and at this point my Doctor feels taking iron pills will not help so I have to go into the hospital 5 times to get an infusion of iron for 1 hour each time. I guess it should help me feel better so I am trying to think a few hours out of my day for the next week is a good thing.
He also said I am now at borderline of dialysis- I am getting into the danger zone. So hopefully we find out this week or next week if Sara's final test was a pass. By my next appointment in 4 weeks if I do not have the transplant ready I have to start dialysis. Also- the dialysis I want takes up to three months to have a surgeon put the tube in my stomach so I might have to do dialysis in my neck in the meantime.
He also said I can't be sick before my transplant so if I start to vomit- (yes a lovely side effect of kidney disease) I have to go into the Emergency Room to have the dialysis done in my neck asap. So you can imagine how bad I want to stay feeling OK. I have not had any nausea in the past few weeks and now I pray that I do not have this until I get my surgery. I mean the neck? really? How freaking gross!!!!
I am so glad my mom was at the appointment with me because I can't go to these bad new bears meetings anymore alone.
So after getting all this overwhelming information at the doctor I had to pull myself together and went to Caesars for a meeting. I didn't think I could put on a happy face but I found the strength to be OK at that moment and when I saw my friend Michael who is always so good to me I knew I could push through this.
On the bright side- My Dad is coming to Vegas tomorrow to help me with the doctors and kids and shopping so I feel I will not be as overwhelmed as before. Oh- I forgot to mention no more protein at all- I had to cut meat way down but now I am on a strict vegetarian diet. So glad Sara and Collette are coming over Saturday to hang out and make Vegan Burritos :) I am sure between Collette being a vegan and My Dad's Wife being a Vegetarian I can get some good recipes. I love to cook so I am not eating plain food- I need to get ideas for great meals. I guess I need to get a Costco size bag of chicken nuggets in case my kids do not like the new menu.
I am in a really good place again, feeling like I can conquer the world if only my body would let me. Everytime I get knocked down and think I am going to breakdown I pull myself back up and become happier in life then I was before because What is life really? Just a bunch of setbacks and rollercoaster rides so I might as well enjoy mine.
Until I write again!
After my doctors appointment today I thought, I am not posting on my blog, it is too personal and I am not letting anyone know I am getting worse as I feel it is a sign of weakness. But after sitting on it a couple of hours I have realised I can put my ego aside and not always be the happy go lucky strong person and be OK with getting sick. And I also committed to sharing my story so why stop now.
Hell, where do I start? I am at 9%- nothing new I expected it to be lower and my creatine is at 5.85 - which I was OK with hearing that awful number. I have to go to my regular doctor and get a B12 shot on Thursday- I can't remember why but I must need it. Now the wrench in my plans- I am severely anemic and at this point my Doctor feels taking iron pills will not help so I have to go into the hospital 5 times to get an infusion of iron for 1 hour each time. I guess it should help me feel better so I am trying to think a few hours out of my day for the next week is a good thing.
He also said I am now at borderline of dialysis- I am getting into the danger zone. So hopefully we find out this week or next week if Sara's final test was a pass. By my next appointment in 4 weeks if I do not have the transplant ready I have to start dialysis. Also- the dialysis I want takes up to three months to have a surgeon put the tube in my stomach so I might have to do dialysis in my neck in the meantime.
He also said I can't be sick before my transplant so if I start to vomit- (yes a lovely side effect of kidney disease) I have to go into the Emergency Room to have the dialysis done in my neck asap. So you can imagine how bad I want to stay feeling OK. I have not had any nausea in the past few weeks and now I pray that I do not have this until I get my surgery. I mean the neck? really? How freaking gross!!!!
I am so glad my mom was at the appointment with me because I can't go to these bad new bears meetings anymore alone.
So after getting all this overwhelming information at the doctor I had to pull myself together and went to Caesars for a meeting. I didn't think I could put on a happy face but I found the strength to be OK at that moment and when I saw my friend Michael who is always so good to me I knew I could push through this.
On the bright side- My Dad is coming to Vegas tomorrow to help me with the doctors and kids and shopping so I feel I will not be as overwhelmed as before. Oh- I forgot to mention no more protein at all- I had to cut meat way down but now I am on a strict vegetarian diet. So glad Sara and Collette are coming over Saturday to hang out and make Vegan Burritos :) I am sure between Collette being a vegan and My Dad's Wife being a Vegetarian I can get some good recipes. I love to cook so I am not eating plain food- I need to get ideas for great meals. I guess I need to get a Costco size bag of chicken nuggets in case my kids do not like the new menu.
I am in a really good place again, feeling like I can conquer the world if only my body would let me. Everytime I get knocked down and think I am going to breakdown I pull myself back up and become happier in life then I was before because What is life really? Just a bunch of setbacks and rollercoaster rides so I might as well enjoy mine.
Until I write again!
Wednesday, March 2, 2011
Summer in Arizona
There is nothing more that I want then to spend the summer in Tuscon for a few weeks. While I will miss my kids I can't wait if all goes well.
On that note Sara did her blood tests and she is compatible to be a donor. We have more tests next week and at any point she could be denied but she passed the first step. I am SOOOO Excited today!!!!
Found the hotel I want to stay at and I am already learning the area. I will keep you updated- hopefully we will know if she passes the next round of tests by the end of next week. UMC Tuscon said that they will make sure it goes pretty fast so I am ready to fast track this surgery.
I hope I can get a visitor or two to come and see me so I am not bored out of mind!! I would love for my kids to come down but they are walking germs so I think it is best to have them go on vacation with Deacon while I am gone and I will see them when I get back. Thank Goodness for skype so I can still see their faces everyday for a month.
On that note Sara did her blood tests and she is compatible to be a donor. We have more tests next week and at any point she could be denied but she passed the first step. I am SOOOO Excited today!!!!
Found the hotel I want to stay at and I am already learning the area. I will keep you updated- hopefully we will know if she passes the next round of tests by the end of next week. UMC Tuscon said that they will make sure it goes pretty fast so I am ready to fast track this surgery.
I hope I can get a visitor or two to come and see me so I am not bored out of mind!! I would love for my kids to come down but they are walking germs so I think it is best to have them go on vacation with Deacon while I am gone and I will see them when I get back. Thank Goodness for skype so I can still see their faces everyday for a month.
Tuesday, March 1, 2011
My Hero....
I hope Sara doesn't read this or she might get a big head....HA HA. Ok seriously I just have to say that no matter what happens, even if they say my sister isn't a match or she can't donate I already feel like she is my hero for giving me hope. Hope has made me push through and stay positive, feel better and have something to look forward to.
For anyone who decides to even test to be a donor it is such a selfless choice. I am so proud of her for stepping up and offering her body for me yet again- when I was having a hard time getting pregnant she offered to carry a baby for me- although I was lucky enough to carry both of my children. Anytime I need her she is there for me.
We never hang out that much even though we live in the same city- unless I am having a margarita laying in her pool I don't get to see her often. However, the past few weeks we are spending more time together so whatever happens I am just so thankful for the fact that I have Sara in my life more. Now I just have to talk her into not ever wanting to transfer back to the twin cities for work!! Sara- you can have the house in Malibu if you stay :)
Here are a few photo's of our outings. PS- I was not drinking in the photo's it was in a nightclub and the flash kept making my eyes squint so the last one I tried to open them really big!!
Thanks Collette for always having a camera!
For anyone who decides to even test to be a donor it is such a selfless choice. I am so proud of her for stepping up and offering her body for me yet again- when I was having a hard time getting pregnant she offered to carry a baby for me- although I was lucky enough to carry both of my children. Anytime I need her she is there for me.
We never hang out that much even though we live in the same city- unless I am having a margarita laying in her pool I don't get to see her often. However, the past few weeks we are spending more time together so whatever happens I am just so thankful for the fact that I have Sara in my life more. Now I just have to talk her into not ever wanting to transfer back to the twin cities for work!! Sara- you can have the house in Malibu if you stay :)
Here are a few photo's of our outings. PS- I was not drinking in the photo's it was in a nightclub and the flash kept making my eyes squint so the last one I tried to open them really big!!
Thanks Collette for always having a camera!
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