October 2007 - "Back in the Saddle Again".!!
June 5, 2007
Candi is a 23 yr. old NBHA TX 26 member who received a double Lung Transplant, AND had heart surgery to repair a heart defect, on June 4, 2007. She is in our prayers and in our hearts. Many of you are asking about Candi, so I will try to update you on any news I get from Candi. God Bless all of you that helped in any way at her Benefit Fundraiser!!
CANDI'S 1ST BUCKLE AT AGE 6. (Shown with Playday secretary Cindy Jones).
Lung Disease: Bronchiolitis Obliterans Congenital Heart Defect: Partial anomalous pulmonary venous return to the superior vena cava Bronchial Tube defect: She has an extra bronchial tube and it has its own tissue, kind of like a 3rd lung. It's extremely rare, there have only been 36 documented cases ever.
.."All 3 are rare defects, so I guess its extremely rare to have them all in one person. Cool!! I'm unique!! ". Candi
May 8, 2008:My bronchoscopy yesterday went really well. Doctor flushed the lungs out and took a biopsy from the right lung. I'll have results early next week. He said everything looked great. He also asked how I was doing with eating. I told him I was eating whatever I wanted. He stated good, then that means I can take the J tube (feeding tube) out. I told him I don't think so. That I was eating but not eating enough to sustain life. It takes me all day to eat what one person eats in one sitting. He said that I should be able to have to removed soon though, most likely after my next surgery. I'm having a hysterectomy soon as they find a surgeon and get all the details worked out. I have 95% lung function. When I saw the cardiologist last week, he said everything looks great and changed up my heart medicine some to a higher dosage. I hurt my back 2 weeks ago riding my paint mare, so have to stay off a horse until its healed up. The impact of the hooves hitting the ground along with me hitting the saddle's seat jammed my back up. The doctor did spine x-rays and they were clean. I still have issues with nausea and I take anit-nausea medicine daily for that. Just can't wait to get my next major surgery out of the way so everything can get back to normal. Things are going great and I'm slowly getting back to doing normal things.
May 6, 2008: I went to the cardiologist today, at Baylor in Houston. Cardiologist did EKG and it looked great, just showed that I had some tachycardia. Heart rate was 103. Told him that the heart medicine wasn't lasting 24hrs like its supposed to. He told me to take the 100mg like I have been in the morning then 12hrs later take 50mg. And give it 1-2 weeks to see if it will work for me. And to see him in 6 months for check up. He was very pleased with how things are going.
I showed him my hard lump thats on my right lower side that I found last Friday. He thinks that it is from the Lovenox injections that I take twice a day in the stomach and should heal up and go away. Said to show my lung transplant doctor Thursday when I see him for my bronchoscopy.
I also talked to him about getting a hysterectomy. Told him I don't have a doctor/surgeon yet for it and that I'm getting it done as soon as the lung transplant doctor says I can. He said that he would talk to my transplant doctor to see if it will be done at Methodist or St. Lukes (Both in Houston's medical center) and they will decide who will the the surgeon/doctor/OBGYN for me for that. Cardiologist says I could have it done in a month or two he thinks, as long as my bronchoscopy has good results and everything is going well. And when I get it done he wants to know about it and be on my case as he wants to be there for me to monitor my heart and overall health. And my transplant doctor will be there as well for my lungs.
I guess I'll find out more on Thursday when I go for my bronchoscopy. It will be at 10am, but I have to be there at 8am! Which means I have to get up really early! They will be looking and taking a biopsy.
Oh, and my Mom is a nurse and works for a doctor. The doctor's son is also a doctor but was first a licensed massage therapist, and he said he would give me 30min relaxation massage for free! I can't wait to get the massage! Its going to feel so good! I'm really really excited about it.
After seeing the cardiologist Mom and I ate at Luby's. MMmm, it was so good! I had fish, spanish rice, mac n cheese, roasted red skin potatoes, roll, and carrot cake for dessert. I wasn't able to eat the majority of it, as I can only eat a few bites of food at a time. So I took it home in a to-go box along with the pinto beans that Mom didn't eat, lol. I'll be eating on this meal for the next couple of days, haha.
My back is healing up, it still hurts but not as bad. I just have to stay off the horses and take it easy until it no longer hurts. I hurt my back while riding Alleyway a week ago. We were slow loping through the barrels and I popped out of the saddle and when I came back down into the saddle it jammed my back up and hurt really bad. I had 4 x-rays done of my spine since I have osteoporosis, and the doctor didn't see any fractures.
This has been a busy week for me! I went to transplant clinic this past Friday, then today the heart doctor, and Thursday I'm getting a bronch! I don't know what day I'm getting the massage, it was going to be tomorrow or Friday, but I think I'll get it done next week now, after all the apts are over so I can just relax.
Lungs are doing great! 95% lung function! Only thing they were concerned about was the creatinine(sp) was at the higher end of normal. Its a kidney test. They are hoping I was just a little dehydrated and thats why its up. They gave me a Rx for something that I can take for the migraines and menstrual cramps on the worst 2 days. Can't take it more than that because he said its either too hard on the kidneys or the liver with the anti-rejection medicines I'm on.
So, I'll be having another surgery soon, its a MUCH needed one. I've been having issues with my cycles since I was 16yo. But they put me on birth control which made all the bad issues I was having stop. Then I got blood clots and can't go back on birth control so the problems started up again shortly after transplant. I just had so many other things going on that we all ignored the cycle problems. Now I'm better and the issues are causing major problems. And I'm tired of dealing with it all so am finally ready to be done with it and get it taken care of so I can really enjoy my life and get back to doing things.
I weighed 114 lbs today. And the cardiologist said I look really good, the best he has ever seen me he says!
I got my pulmonary bronchial stent removed in surgery on April 1st. Since its been out I haven't had to get a bronch done every week like I was getting them! I haven't had one in a little over a month now! I get one this Thursday though. Thats a great thing! Since I was getting sedated every week for the bronchoscopes I've built up tolerance to the sedation and now its really hard for them to sedate me. Last time they said they gave me enough sedation to knock out 13 full grown men and that was the most that he has every given to one person. Said I was still fighting them too. So the last couple of bronchs that I've had have been under general anesthesia because of me building up tolerance to the sedation and still fighting them.
XOXO
Candi
February 17, 2008: Hi All! I came home Feb. 13th. Looks like things have slowed down, thats a GOOD thing,lol. Seems like I'm over most of the bumps in the road now, keep fingers crossed! Changing out the feeding tube worked, I don't have pain anymore!! Right now just trying to get all my medicine adjusted, which at times seems like a never ending battle. When the serum level of Prograf (anti-rejection drug) gets high I have uncontrolled nausea and dry heaves, so I have to get blood drawn soon as I was sick from it Friday. Before getting discharged I did the gastric empty study. The first time I had it done right after transplant it showed that it took me over 22hrs to digest the egg. This time my test was completely normal!! It only took me 62min to move the egg from my stomach into the intestine. I still get nausea and dry heaves from the gastroparesis, hopefully all that will slow down now that my stomach is working better. Doc still doesn't allow me to eat anything yet. All I can have is hard candies and popsicles and enough drink to get the pills down that I take by mouth. Most of my medicines are put into my feeding tube. I've been exercising to regain strength. My next clinic appointment in Houston is March 11th. I go in for blood work, pulmonary function test, 6 min. walk, chest x-rays, and see the doctor, either Dr. Harish Seethamraju (my hero) or Dr. Remesh Kesavan, his partner. Dr. Harish made a point when he discharged me to "see me IN the clinic" and not the hospital,lol. I'm going to try hard to not disappoint. While in the hospital I also got REALLY good news! Doc Harish palpated my sternum with his hands and said its finally healed (took my bones a long time to heal due to the steroids I have to take to help keep me from rejecting my lungs) and he said I can barrel race now! HA! But I'm still weak to go jumping on a horse, so I have to get a little well, a lot stronger. I also have to get fatty fatty 2x4 can't fit through the kitchen door Alleyway into shape as well. I also don't have a horse to barrel race at the moment, so have to get the young ones going better so I can start back with 26 doing exhibitions and try to not fly face first into the mud again (bad Alley!). Mom is working on planning a 1yr anniversary party for me, a crawfish boil. Thomas and Mack have been doing wonderful! I can breathe with them so well right now. It feels like they were always meant for me. Please, if you can sign your driver's license AND let your family know if your an organ donor as they will have the final say if your organs are donated or not, you can also put it in your will. Of everyone that dies only 30% are organ donor's and of those 30% very few have suitable organs to donate. Love, Candi
February 7, 2008: 'I'll be having surgery tomorrow to have the feeding tube changed. The new surgeon thinks its the stitch that holds the feeding tube in place causing inflammation and pain. So they will put in a feeding tube that has a bulb at the end so that I won't have to have any stitches on the outside. Hopefully that will do the trick! If that doesn't work then they will have to go in and see if there is any scar tissue or adhesions to remove. Candi'
January 22, 2008: "I'm doing okay right now. Been to the hospital 3x since last email. I had to go in middle of December to get the biliary stents removed. Then after they were out the doc decided to take out my pulmonary stent. As soon as is was out they had to put it back in the next day. Then a few weeks later I started having pain around my feeding tube so was admitted for that, they couldn't find anything wrong so let me leave, this was on and through New Years. Then a few days after that I had more breathing problems so was admitted and they did a bronchoscopy and cleaned my new pulmonary stent out and all was well again with my lungs. Then they put me on IV antibiotics for the feeding tube pain, they say its infected. I'm home now though and have 5 more days of IV antibiotics. I have a home health nurse that comes to the house now to draw my blood so that I don't have to go to the labs all the time and wait in the waiting room with sick people. I will have her until my central line comes out of my neck when I'm done with the home IV antibiotics.
We had a tree fall down last night across the fence, its been so soggy it couldn't stay up anymore I guess. The holidays were great. I was home for Christmas. But spent New Years in the hospital. We did fireworks when I got home though. Also saved some fireworks for June 4th, my 1yr anniversary. I'm tired of all this rain, water, and mud! I'm sure y'all are too! Candi "
November 7, 2007: "I'm doing really good, my breathing is still fantastic just have a cough. Just got back from Houston. They found a really bad fungus growing in my lungs. Its a fungus that can be found in house dust, soil, plants, even the air. The doctors had me do a chest CT to see how bad it is to see if I need to get medicine through an IV in the hospital or if I can just take the medicine in pill form at home. I should know something within the next couple of days. They changed up one of my meds to a stronger anti-fungal. I have to get my blood checked Friday and then again next week. I didn't get to see the doctor so I don't have many answers. 50-85% of the people that get it die. When I talked to the nurse this morning she sounded freaked out. The fungus explains why I have been coughing and having headaches lately. Now that this is getting taken care of I'm hoping to get back on track again soon!! "...Candi
October 25, 2007: I've been home for a little over a week now! I'm doing really really well! I weigh 97 lbs now. I have been walking so much that I have shin splints, LOL. Today I even rode Alleyway!! I have to wear a helmet and riding vest until I'm all the way healed up, and of course my mask. I had so much fun, I didn't want to get off until my butt started hurting to much. Think I need to sit on a pillow in my saddle, hehe, then I could ride longer. So far all I can do is walk around. I had to use a stepping stool to get on and off Alleyway. She was perfect just did whatever I wanted to, I think she knew to take care of me cause sometimes she was hard to make her even walk, that or she is so fat and lazy! I see the doctor this Tuesday for lab work, chest xray, pulmonary function test, and 6 min walk and then follow up. Then on the 31st I will have a bronchoscopy to check stent placement and check on my lungs. And the first part of November I go back to see the surgeon and hopefully get the t-tube drain taken out! I attached a few riding pictures from today.
Candi
October 10, 2007: I'm doing great right now, just tired! I had to have emergency surgery last night. I had all the doctors, surgeon's, and nurses freaked out, parents too. LOL. My left bronchial tube closed off all the way yesterday afternoon around 2pm. I was left with just the right lung to breathe with and the left side of my chest didn't move at all and it hurt badly were pain killers didn't help at all. I went into surgery to get it opened at 4pm, the specialist there couldn't open it and refused to do anything else as he was afraid he would cut my pulmonary vein or artery and I would bleed out. So he called my transplant doctor and he set me up for another surgery in a different OR. My surgeon and all the doctors were there and lots of nurses running to get everything ready and people in such a hurry they were dropping everything. I was white and pale as I couldn't breath. They put me under general anesthesia again and the surgeon took a wire and had to poke around to find the opening, found a opening, dilated it with a balloon, inflated the balloon, put in a stent, and cut away the extra scar tissue. As soon as the surgeon did that I could breath again. They gave my parents 3 senerios and all were bad, so everyone was worried. So now, once a week I'll have to get a bronchoscopy to clean around the stent and cut away scar tissue. From, Candi
October 4, 2007: I had my surgery Tuesday. The surgeon dilated my common bile duct and cleaned all the sludge out of it. He said that if was completely closed off from sludge and swelling which was causing most of my nausea. So hopefully I won't be nauseated as I was before now thats the gall bladder is gone. Putting in the feeding tube went very well. Surgeon had to remove a lot of scar tissue that was in that area. Instead of doing the surgeries through the scope they did an open surgery going through the same incision that I had for the first stomach surgery I had so that they could see better, scar tissue was in the way, and because he wanted to clean out the common bile duct tube and take xrays of it.
I'm most likely going to be in here another week. I have a drain tube coming from my common bile duct draining bile. Have another drainage tube in right below the bile drainage tube draining off fluids (blood) from the surgery itself. The feeding tube is on my left lower side.
Wednesday night, 10/3/2007) I started having trouble breathing. So they had a fellow come and check me out and ordered a breathing treatment, EKG for my fast heart rate, and a medium dose of steroids. This morning they did a chest xray. The breathing treatment helped but its still harder than normal to breath in. The breathing trouble is either from a blood clot, mucus plug, or more narrowing of the left bronchial tube. If its not better by Monday I think they will do a bronchoscopy early next week. Right now they have me on mucomist to thin out any secretions/mucous that I may have in the lungs.
I have also been itching like crazy since surgery. The doctor thought it might have been due to my liver function, but ran a blood test on that and it came back normal. So that means all of the itching is being caused from the pain medicine I'm getting called dilaudid through a patient controlled analgesic assistance pump (where you push the pain button and get medicine every 5 min). Doctor changed my pain killer to a fentanyl patch and for break through pain I get a bolus dose of morphine. Hopefully that will take care of the itching as they are giving me IV benedryl and it isn't helping to stop the itching at all! I itch from head to toes!!! Mom calls me scratchy now, LOL.
Saturday is my birthday I'll be 24yo, before I had these complications and landed myself in the hospital I was going to get to go and watch the Buna barrel race and visit everyone for my birthday. Instead Mom is going to buy us a DVD to watch and eat a little ice cream.
I can't wait to get better from this surgery so that I can get home and ride Alleyway!! Yes, you heard that right!! Doctor says that when I go home this time that I can ride!!!!! All I can do is walk around on a dependable horse at my house and "no crazy riding like you do around those barrels" is what the doctor said. I can start to go faster and return to barrel racing as soon as my sternum and ribs are healed and stable. He palpated the sternum and ribs and they still move around from light touch from the lung transplant surgery. The steroids that I'm taking makes my bones harder and slower to heal up.
Other than that its just hard to focus on reading and what I want to say and I get confused very easily from the effects of the anesthesia, pain killers, and exhaustion. I haven't been getting good sleep since surgery, Mom either. We have been taking naps after lunch time.
I was started tonight on a clear liquid diet. So I should be able to have my ice cream on my birthday as long as my stomach is doing good. Always, Candi
September 28, 2007: Guess what!! Doctor said that I CAN ride!! He said I can only walk around at the house no "crazy" riding, lol. Not until my sternum heals up anyway, hehe.
I was dry heaving this morning so much that they had to give in and give me IV nausea medicine. Once I got that I was good to go. I'm already getting dehydrated so they are going to give me IV fluids today. Monday they are going to put in a feeding tube. Doctor said that I'll feel much better once I get enough nutrition and will be able to do more things as I'm still not able to consume enough even on one of my really good days. Both the transplant and the GI doctor think that its the best way to go and will more than likely only be temporary.
Candi
September 24, 2007: Hey! I'm back at the hospital. My spiro's (lung function tester) were going down Thursday-Saturday and was having abdominal pain with it. So Friday transplant doctor made me go in through the ER. I was dehydrated as well. They admitted me. They did whole abdominal ultrasound and an MRI of my abdomen. The gall bladder still has sludge in it and is dilated. My breathing is doing great except for the wheezing that won't go away and I'm a little more short of breath than normal. Today they are going to do a pulmonary function test on me to compare it to the one I did last Thursday to decide if they are going to dilate or put a stent in the left bronchial tube. Doctor said he will watch me a few more days and see if I can eat on my own in adequate amounts to sustain life, if not then they are going to put in a feeding tube that will be just below my stomach. Dad is here at the hospital with me.
Love,
Candi
September 11, 2007:Guess what?! I'm home!!! Got home on Friday!! Still have problems with nausea and weight gain. Slowly but surely I'm getting there though. If I weigh 90 lbs or less doctor says I'm going back in hospital. I eat 3 oz every 2 hours. I'm still not allowed red meat or fibrous foods, another 2 1/2 months before I can start adding that to my diet. My last bronchoscopy showed no signs of rejection! I see the doctor again in 2 weeks. He has to monitor my left bronchus closely as its trying to close. If it starts causing issues he will dilate it first with a balloon then a stent if dilation doesn't work. I'm still now allowed to go near the horses yet. But I can go outside and look at them at least! The IVC filter that I had placed in me to prevent clots doesn't hurt anymore, yippeee! I'm just so glad to finally be home in Orange!! I've been in the hospital for 3 1/2 months!
Love,
Candi
August 30, 2007: I had the stomach surgery on Aug. 3rd, then developed blood clots in both arms and both legs from the PICC lines in my arms. So now I have to get central lines placed in my neck for IV access. Then my nausea got worse so the doctor explored other things that can cause extreme nausea and did a CT of my brain for tumors, came back normal, but talk about scary! Then did a ultra sound of my gall bladder and it showed that its inflamed and dilated, has sludge in it and isn't contracting like it should be. Usually they remove your gall bladder for this but I'm to weak for another surgery so they put me on a pill that takes 6 months to a year to work. Finally after not being allowed to eat for almost 2 weeks they let me. So far I can consume about 3 ounces at a time, more than that I get really sick. Today I've had no nausea at all, which felt so great! And Doctor said I need to gain another 4 lbs before I can go home to Orange! Yes Orange, real home! And I need to be able to take in at least 1500 calories. Tuesday I took in 400 calories, yesterday I did 700 calories, so getting a little better. I don't know how much I took in today yet. Doctor says I still have to stay away from the horses for a little while, even if I wear a mask. But at least I'll be able to see them from the window and will be in the comfort of my own home with family and friends nearby!
Love always,
Candi
August 2 2007: "Just when we thought everything was going so good, Candi had a spell of
the nausea again. This was last week. The doctors decided they were
going to have to go ahead and perform the stomach surgery before she
aspirated some more stomach content into her new lungs and got
pneumonia again. Tuesday was the day. The surgery itself came off
without complications. When I slipped into PACU, the first thing Candi
told me, with tears in her eyes, was that the transplant surgery didn't
hurt at all compared to this. She wanted me to stay, but they wouldn't
let me. They did tell me that Bridgette could come back, and I managed
to get them to allow Bud and Fred to come back before they headed back
to Orange. While Bridgette was back there, Candi was pleading for
something else for pain, while the nurse tried to placate her by
telling her that was all the doctor would let her have. Right now,
after watching her for hours and knowing the pain she is in, it is
still unbelieveable what she did next. She sat up in her bed and
screamed, "I can't take this anymore! I'm hurting and need something!"
At this point, the PACU doctor told the lady they could go from giving
her the pain med every 15 minutes, to every 6 minutes. HA! By the time
she was allowed to come to the room, they told us to not let her go to
sleep, because she had gone to sleep and stopped breathing in PACU. She
has a high tolerance for narcotics, and versed drives her up instead of
down. It appears the duladen and morphine is somewhat similar. They
gave her enough to put 2 - 200 lb men down, and she was just in and
out. Anyway, it is 6:10am Wednesday, and I have been up all night with
her while Bridgette sleeps across the room so she can stay with her
today. Candi is doing much better and feels good enough that she was
able to email some of her friends earlier. But while doing it, she says
that it still hurts worse that the transplant, then reaches over and
pushes her little button. HA! They say 3 to 5 days with the NG tube,
then liquid diet for a couple more, then they will let her begin to mix
a little bit of solid food in with it. They did the reflux surgery on
top of her stomach, then opened the bottom of it up so that it would
drain into the small intestine easier. They could do just the reflux
surgery part with a scope, but Candi's surgeon said he will not do the
bottom part with a scope because he says it is too easy to nick the
intestine, which would lead to other problems. So, it looks like she
will sport a nice scar with this one. Judgeing from the tape, it looks
like there is an incision from her breast bone to herbelly button. In
case you didn't know, when they did the transplant incision, they cut
her from side to side, under her breasts, and a bra would cover all the
scars. Anyway, her lungs are still sounding great, and we anxiously
await her next bronchoscopy to see if there is any signs of rejection.
Of course we hope she does nothing but get better from her on out. The
18 year old CF patient, that got a set of lungs right after Candi, is
already showing signs of rejection. That may stop though. They say
everyone goes through some rejection at some point.
Please keep her in your prayers!" Signed, Chick Collins.
July 11, 2007: "First good news! I did a pulmonary function test today and my lung function is 70%, a 10% increase from last Tuesday! 
I also had a chest x-ray today and doctor says that the pneumonia is getting under control and almost gone! For the rest of the news. Tomorrow I have to do a Ph probe study. They are going to put a tube down my nose into my stomach for 24hrs to see if any reflux comes up. I let him know how miserable I was with the NG tube down my nose and he said if it gets that bad that I can have the nurse take it out, thankfully, cause with the NG tube they had to keep me sedated.
I will be having stomach surgery next week, transplant doctor said most likely on Monday or Tuesday. They are going to wrap part of my upper stomach around the esophagus to prevent acid reflux from getting into the lungs. And for the bottom stomach sphincter they are going to make it wider so that food can pass through it easier. Which will hopefully help and make things easier for me. The surgeon will be the same surgeon that did my lung transplant, heart surgery, and bronchial tube defect surgery. I'm not sure when he will make rounds to see me and explain the procedures again to me.
So no get out of jail card this Friday for me.
Other good news! I was to have a crawfish boil party but since I can't eat that stuff and will have to hold off on it until I can. Dad said he is going to let me pick out a breastcollar and headstall for Toast and he will pay for it! I tell y'all, I have awesome parents and a brother!! My brother has been the one mostly taking care of my horses for me and he doesn't even like horses so I know he loves me! Dad helps out with the horses too but he is trying to do a lot of over time to bring in some money. Mom mostly stays with me at the hospital.
Love always,
Candi"
July 5, 2007: Candi is in the July issue of Barrel Horse News !!! Here's another update from her: " GI doc just left from seeing me. She says that my stomach could take 3-11 months to recover and that it may never recover. And worse case I could end up with a feeding tube or gastric bypass surgery. She said right now its mainly eating the right foods and chewing really really well. Foods I have to avoid are corn, all kinds of dried berries, dried figs, apples, coconut, brussel sprouts, and tomato and potato peelings (which I can't eat peelings anyhow since I'm post-transplant). I also have to avoid fatty foods. I need to avoid rice as well. I can eat most foods, I just have to make better choices and chew chew chew really really well until you can't tell what I put into my mouth. Mostly I can have any spicy food she said, just have to be foods that are easier to digest for now.
She also said that I may have to live on pureed foods if diet doesn't help or live on a clear liquid diet. Or live on Ensure and clear liquids and pureed.
Tomorrow I'm doing a gastric emptying study where I have to eat a scrambled egg and a piece of toast that has some radioactive material in it and they watch it to see how long it takes to get to the stomach and how long to pass into the intestine. She said depending on that test she may want to do an endoscopy.
I'm also supposed to have the bronchoscopy on Thomas and Mack tomorrow.
Phew, that was a long update! ![[Wink]](http://forums.horsecity.com/bb/wink.gif)
In a bit after my dinner digest (I ate baked catfish and mac n cheese and apple juice) I'm going to go walking. I'm already tired for today I didn't take my nap.
I feel great even with everything going on, and feel like I'll over come every obstacle set in my path.
XOXO,
Candi"
July 4, 2007: " Happy 4th of July everyone!
As you know I was discharged Saturday from Methodist. And Tuesday I had my clinic day to see the doctor and all day worth of testing for blood work, chest x-ray, and pulmonary function test. Tuesday I woke up with nausea and vomiting, fevers, and high blood sugars even though I wasn't eating anything. By the time I got to my clinic apt to see the doctor at 2:30pm I was really sick. It was getting to where I couldn't hardly keep my medicine down. So doctor admitted to the hospital. Yesterday they though I had gastritis and inflamed esophagus. Today they tell me that I have the inflamed esophagus and double pneumonia, which is very serious in the post-lung transplant patient. So I'm getting lots of IV antibiotics, more physical therapy, and breathing treatments. I think they are planning on doing a bronchoscopy on Thomas and Mack in the morning. Today I'm not nauseated or in any pain, so thats great! Yesterday during my pulmonary function test it showed that my lung function is 61% and thats with pneumonia, so thats really good! A lot better than the 15% I had before lung transplant! And during my 6min. walk test I walked for 4min for 600ft, I had to stop at 4min as I got really nauseated.
Love,
Candi"
jUNE 27, 2007: "I had to return to the hospital Sunday with nausea, throwing up, dry heaves, and fevers. Doctor says that my stomach is stunned from surgery and could take 6 weeks to recover from it. He also said that there is a nerve that goes to the stomach and that during my lung transplant the nerve could have been damaged causing all the stomach problems. And the surgeon mentioned stomach surgery if things don't get better. He started me on a new drug that isn't FDA approved to try to help control the nausea. Monday I was started on TPN (IV nutrition) since I'm unable to keep much down. Tuesday he did a bronchoscopy on my lungs and Thomas and Mack are doing great! He said they look healthy and I hardly have any secretions left in them. I have pulled muscles between my ribs on the left side now from dry heaving so much. I now don't use oxygen at all, not even to walk!!
Love y'all
Candi"
June 19, 2007: "Candi is due to be released tomorrow! She had the last 2 chest
drains pulled yesterday, and they plan to pull the remaining staples
tomorrow morning. She is only requiring oxygen during physical
therapy right now, and her blood oxygen saturation is staying around
99%. Actually, I think she could go without the oxygen during PT, but
I think it is a mental thing with her. What they are having some
trouble with, is her heart rate. The doctor tells me that her heart
beat so hard and fast for so long, trying to get O2 to her tissues,
that there has been some permanent damage to the back of her heart.
The heart rate is holding around 100-105 at rest, sometimes dipping
into the high 90's, and gets faster during PT. One time it only got
to 125 bpm, while the following day, on the exact same exercise, it
got to 138bpm. She says she is getting stronger everyday, and it is
evident! She ordered (guess who paid!) white gold 2 butterfly pendent
necklaces to honor the donor. She plans to wear one and send the
other to the donor's mother, whoever that is. I thought that was
really neat. She also has proclaimed that not only is she going to
get back to barrel racing, but that she is going back to Lamar and
complete her degree in Nursing. She said she will wear a mask, gloves
or whatever it takes. I think she got more determined on this when
she learned there is a lung transplant recipient that works for Dr.
Harrish, who is her lung transplant doctor. She said she can't wait
to get back to leading a normal life. She realizes that this will
take a long time, as her body had really lost all muscle tone. The
doctors tell us it will be 3 months before the lungs are close to
normal function, and I am not sure about the heart rate. They said
that will take time, but not sure how long.
It has been a long road to get her where she is. In that travel I
think we experienced the best of the best at each hospital in the
Texas Medical Center. We started at Herman, then St Lukes, to Texas
Children's (where the doctors there made the accurate diagnoses of
her condition), and ended up at Methodist. In this travel, we met
people from all over the world, who are at the Texas Medical Center
to learn, because they want to be the best at what the do. It was so
refreshing. The level of care is certainly on a higher level there." Signed, Chick Collins
June 13, 2007: A note from Candi: "Hey everyone, Things are going well. I'm getting a bronchoscopy in the morning for doc to take a look and see at my lungs cause they are wheezing some and still short of breath. I walked over 200ft now! Everyday I feel stronger! Right now my prograf level is high so I have lots of tremors, hopefully that will level off soon. While I'm in the hospital they are going to split my heart medicine up to 3 times a day and when I go home I'll go back to taking it once a day. I'm still having issues with tachycardia when I walk so I take rest breaks during PT to let me heart rest. I'm still hooked up to 2 chest tubes that are still draining, mostly waiting for that to stop so they can come out. Still taking pain meds from the incision pain and chest tube pain. I got the PICC line removed from my neck, still have the one in my arm. I got an apartment, right here on Fannin street that is fully furnished and has free transport to the hospital for just a little over $2k a month. My outpatient clinic apt. are already scheduled, I will see the doc every 2 weeks and go every 2 weeks as outpatient for special IV anti-rejection drugs for 2 more doses. I'm diabetic now so I'm on regular insulin and lantus and talking about starting the insulin pill gluchphage. I also ordered a butterfly necklace for me and the donor's mom in remembrance of the gift he gave me, as a butterfly looks like a set of lungs.
Here is the address of my apartment that I will be at for at least 3-6 weeks.
Don't send anything to this address until I'm there because I have to fill out a form when I get there and put in the mail box first or everything you send will get returned to you. The only things I can't have are flowers, plants, fresh fruits and veggies. I'll let Debbie know once I'm moved into the apartment.
Candi Collins
8181 Fannin st
apartment 2414
Houston, Tx 77054
Thanks so much for the continued prayers and well wishes! My family and I are very grateful for them and for the benefit!
Love always,
Candi"
June 10, 2007: "Thank you all so much for the support and prayers and get well wishes! They mean more to me than you will ever know. Please pray for the donor and the donor family too. Without him and his family none of this would be possible for me! I can't even imagine they pain and grief they are going through while I'm here celebrating life. They are truly a blessing and inspiration to me! I will NEVER forget this gift of LIFE and my second chance!
I'm now on room air. On clear liquid diet, get to eat jello, broth, and Popsicles, Hopefully get to eat soft foods tomorrow. I'm up and walking and feel stronger today than yesterday! Still having some chest pain, but thats normal and will heal up soon. I'm still on insulin from taking the prednisone, making my blood sugar go up. I do deep breathing exercises throughout the day. The surgeon said he is hoping to remove the last 2 chest tubes tomorrow.
My parents and brother are fanastic, they are taking care of my herd and me!
I feel very blessed to know all of you on here! And to be giving a second chance! I have so many things that I want to do!! Can't wait to get back on a horse and see y'all at the barrel races! Everyday I wake up and thank my donor family! . All I know about him is that he is my age between 21-24yo, from Dallas area, and he was 3 inches taller than me and weighed more than me. And he was not a smoker or any other type of risk taker with his life. I'm told he was a perfect match for me! I've named my new lungs Thomas and Mack, from the NFR arena of course. " (from Candi)
June 9, 2007: 5th day post-op Candi is up and walking today after getting the NG tube out of her nose and 2 chest tubes out of her chest.
June 7, 2007: Candi continues to improve. They did a broncoscopy in her room today,
and the doctor said he liked everything he saw. They were suppose to
get her up and walking today, but when the physical therapists came by
(twice), there were other techs or nurses in the room doing something.
And with their schedule so busy, they were not able to get back by. I
have come home for tonight, but am going back in the morning, and I
plan to see that the PT does happen. She is getting back pain now from
laying in the same position, but as I said, that will change tomorrow.
The pain from the incision is starting to subside, but she was having
to deal with nausea from all the oral medications she is taking. It
looks like they are getting a handle on that too. The Respiratory
Therapist told me today that he is seeing volume increase each session,
so while she is still on 2 liters of oxygen via cannula, if she
continues as she has, the O2 use should disappear in 10-14 days. I
can't wait to see her without that darn cannula around her ears and
under her nose. She is a hard headed fighter, and I figure she must get
it from her mother.(???) With all the immune suppressants she is taking
right now, she is very vulnerable to catching just about anything. We
must sterilize our hands coming and going. They said nobody but
immediate family until about 2 weeks after she gets home. There is one
immunity suppressant she is taking right now, that will have worn off
by then. They just give it immediately after surgery. Thanks for all the prayers,
Chick"
June 6, 2007: ".....nuse came ini to ask lots of questions and give me pain meds and instructions. they are going to let me eat jello and chicken broth tomorrow.
in pain, but .. it feels so great to breathe and not have to pull air in hard to be able to breathe. once i was awake enough and sedation wore off I was only on repirator for 1 hour with help from it, then another hour with it in but breathing on my own.
after it was removed they had me sitting on side of bed and then walking in place.
Hannah and her parents were here with me and stayed in waitng room with my parents. I cried LOTS of tears of joy when I was able to stand up and wasn't short of breath, it was so amazing, can't explain it. I had the nurses and other patients crying for me as well. Everyone, even my surgeon and doctors are impressed on how well Im doing. Most patients that have lung transplant dont come off of respirator this soon or get to move to a private room, or get up this soon after srugery.
They already took out the arterial line in my wrist and one line out of my neck. Still have the PICC line in arm and a central ling in neck, and a foley cath in bladder.
Have staples but can't see them, they are covered up.
Was in surgery for about 7.5 hours, but the surgery itself only lasted 4.5 hours.
have lots more to tell, but gotta get some sleep. Let everyone know that I'm going well, just tired and in some pain.
hopefully next time I can talk more to you.
Love always,
Candi"
June 5, 2007: 5:45 am:"It hardly seems possible that it has been 24 hours since we got the call that they had a set of lungs for Candi. When we last saw her at 10:20pm, they said she was totally stable for the circumstances, and
that she was doing great. They felt she would be off the respirator
and have her sitting up this morning. She was responsive and following
simple commands last night. As she has done since this all began, I am
sure, she will not lose hope, and will fight for her improved health.
It was so enlightening to see her blood saturation level above 100,
when the highest we have seen for months was 93, and a low of 72. That
means her lungs are working. We will be there to see her at 6am this
morning, and am sure that with the care given her at the Methodist
ICU, she will be better. Thank all of you for your prayers and
concern.".....from Chick (Candi's dad). 6:00 pm - Candi had her respirator removed this morning. She has been moved from ICU to a regular room. Her lungs are working perfectly. Her heart rate is gradually coming down, but is still not yet to normal...which is expected. She's in quite a bit of pain, so morphin is her best friend right now. But considering everything she's been through.....So far, so good!!!
June 4, 2007: Candi got a call for her transplant at 3:15 this morning. 1:45pm - went into surgery. 7:00pm - surgery's over!! Everything went well. They did not have to open her heart, they just re-routed a major vein. The lungs are working great!! There's a little fluid on them, but that's normal. She will spend the night in ICU, then see what tomorrow brings. 9:45 pm: Her family and friends just got to see her. She will be on a ventilator for 12 hrs. Her heart rate goes up and down and so does her blood pressure, but that's to be expected b/c her body is adjusting to a new blood flow to the heart and to new lungs.
June 1, 2007: Doc just came by to see me. He said that I'll be transplanted in 4-6 weeks 
! He is pretty sure about that anyway, will just have to wait and see.
May 30, 2007: I'm going to be in the hospital until Sunday. I was reminding the doctor to write me an order for IVIG for next week, and he said since I'm already here that we could just go ahead and do it now to save money on gas, hotel, and a trip over here. I'm about to go get a PICC line put in and will get the first dose of IVIG tonight after I get the PICC in. Doc said my kidneys are doing perfect, they are still waiting on a few test to come back. Love ya, Candi
MAY 28, 2007: "I'm still in jail,lol. The doctor that is seeing me is covering for my doc this weekend and today, he said that I have stones in both kidneys and the one stone that is traveling. The one thats moving is sitting right on top of my bladder right now. One in my right kidney is sitting down low in it. I have multiple in the left kidney. He didn't know how many in the right. My regular doctor will be back tomorrow so its up to him what they are going to do. They keep having to change the IV site. My veins aren't holding up. My left hand and wrist is swollen from the IV that was there yesterday. They are going to do blood work in the morning.
Chase is on his way over here to keep me company."
Candi
MAY 26, 2007:
"Well, taking all those antibiotics didn't help with the UTI. Pain kept getting worse and Tylenol #3 wasn't even touching it at all. Last night I hurt so much, it made me sick. So at 4am off I was to the ER at Methodist in Houston. They gave me morphine and zofran. Did a CT scan and it showed that I have a kidney stone. ER doc didn't want to release me to pass it on my own cause I was so sick and with my heart and lung problems, so I'm in the hospital until I pass it. They think it will be 24-48 hrs. If I don't pass it by then, my lung transplant docs are going to bring in a urologist. They have me hooked to IV fluids to flush it out and I'm getting morphine every 3 hours as needed. For the first time in 6 days I'm pain free!"
Candi
MAY 22, 2007: A NOTE FROM CHICK (CANDI'S DAD): Debbie and all of NBHA 26 and Friends,
I don't even know where to begin, but for starters, I want to express
my thanks to everyone who participated and helped to make the Benefit
for my daughter such a huge success. It's moving to see how many people
thought enough of my daughter to put their best foot forward and help.
Not only the Barrel Racers helped, but their husbands and boyfriends as
well. Norma Neely told of people in her church, that didn't even know
Candi, that came forward with generous contributions. Then an anonymous
man came forward with a pledge to match whatever was raised. It's
moving to know that people really care about others, especially my
daughter. It's hard enough to watch the child you love succumb to a
devastating illness, then have to worry about all the things that
insurance doesn't cover. The monetary thing we worried about the most,
was that the doctor told us that Candi might have to stay in Houston up
to 3 months after the surgery, for post care. That meant a furnished
apartment, utilities, and Bridgette taking a leave of absence from
work, to care for her. With all the horses here, both of us could not
be gone all the time. With the generous support of all of you, that
part is no longer a worry. Also, the monthly therapy that Candi is
getting right now, is not covered, and Methodist Hospital is doing back
flips trying to figure a way to get it covered another way. The monthly
treatment consists of 4 days of IV infusion at $3500.00 a bag, plus
outpatient care, hotel and fuel expense. It doesn't take long for
things to add up.
I don't know each and everyone of you who helped, but to each of you,
I thank you, and hope that you can help others again, and not ever have
to be on the receiving end of a function like this. Your help is truly
appreciated.
We are confident that sometime soon, Candi will be back on her horse,
competing with each and everyone of you. In fact, when the doctor asked
her if she was prepared for transplant, her only response was,"I'll do
ANYTHING to get back on a horse." She will be back, and you helped make
it happen.
Thank you,
Chick Collins
May 13, 2007: A note from Candi: My family and I are very grateful and thankful to you, everyone, and Tx26 for the benefit. Words can not truly express how thankful we are and what this means to me. The proceeds will help out tremendously with the life long medicines and doctor visits. Along with living in Houston for 3 months after transplant, which my parents will have to miss a lot of work so that one of them is with me.
Doctor says that they usually do require lung transplant patients to stay in Houston for 3 months at least after transplant because the lungs are the only organ that isn't protected from the environment and lung transplant patients are more prone to get sick and have rejection. He did say that depending on how I'm doing that he may let me go home sooner, will have to wait and see, because I'm not only have a transplant but heart surgery at the same time.
Dad and I went to Houston today. I had to do an extensive pulmonary function test and a 6 minute walk test. I couldn't do all of the breathing test because I couldn't hold my breath long enough or breathe in and out long enough. I could only walk 313ft.
When we went to clinic. I got in trouble. Oh well, thats nothing new,lol. I lost too much weight since I was in clinic last. I weighed 106 lbs. today. So Ensure is now going to become my best friend. Hope it taste good at least,lol. Its hard to eat when your never hungry and its hard to eat when you can't breathe.
He said that I'm still 4th on the list. But I'm 1st for my height. So he still says it could be any day.
Love you,
Candi
MAY 12 - CANDI COLLINS BENEFIT: Huge Sucess!! We raised $10,275.00. When you add the dollar -for -dollar match made by an angel, that comes to $ 20,550.00. Thank you all who participated!! God will bless you many times over. This money was raised to help Candi and her family pay for expenses that arise from the Houston trips. Candi will be making these trips the rest of her life and you guys have just lifted a huge burdon off of her. Keep Candi and her family in your prayers. Candi is homebound (almost bed-bound) and the only contact she has to the outside world is through e-mail. So if you could be her e-mail buddy (even if you haven't yet met her) I know it would be very much appreciated. Candi Collins: candi.collins@yahoo.com .
God Bless our Benefit sponsors. Here are just a few: www.texascrystalcreations.com www.marykay.com/ccormier www.aandsmusic.com