Tammy Needs Your Help

June 5, 2017

Contacted my transplant coordinator on Tuesday. They called in an antibiotic for 7 days. I have some severe sinus drainage right now so also refilled my antibiotic nasal flush and I'm currently waiting for that.

June 1, 2017

Monday night I started getting a sore throat and by Tuesday morning it was pretty bad. But I went on with my day. This morning it was worse and hurts to swallow drinks, food, or even my own saliva. I have a lot of sinus drainage too, which is a given for the sore throat. So I contacted my transplant coordinator and she called in antibiotics to hopefully nip this in the butt. Could be my chronic sinusitis or could be something else. Not really sure. Just hoping this sore throat starts feeling better. If it's still bad after a couple days on antibiotics then I'm contacting my coordinator again.

May 13, 2017

Not many people understand the costs that go along before, during and after a transplant and still having cystic fibrosis. For the rest of my life I will exceed my deductible/max out of pocket every year. And the costs of premiums and deductibles still rise every year. The health care system is not set up for people who are born with a genetic terminal disease or any other kind of life long medical illness/disorder/handicap.

People see me and I run, do crossfit, and overall look healthy (I am required by my doctors to exercise daily for a minimum of 30 min (cardio)). Running is excellent cardio and crossfit is great for my bone density being that I'm on prednisone for life.

Most do not know on a daily basis I deal with chronic sinusitis due to CF, I'm immunosuppressive due to rejection meds and have to wear a mask in public to protect myself, which in turn stirs up major anxieties to where I wouldn't go anywhere (you won't believe how cruel and insensitive people ate about staring and making comments that have made me leave a store crying) . Last year my doctor approved me for a service dog to help with my PTSD/anxieties to help me get out of the house more, which has worked wonders for getting outside but I still don't "shop" other than grocery or sometimes a local store. I hate malls and my dog is still a puppy learning the ropes. I also have kidney disease due to rejection meds too, and many other things we won't get into.

Working isn't an option.. after my transplant I had to resign from my dream job of 15 years. I was also told doctors prefer their patients do not work because of the risks of being around people and getting sick. See the slightest cold for me could put me in chronic rejection and death. So is the risk worth it?

I'm stressed daily about my medical bills, which are currently $15k and growing and that's not including prescriptions and supplies. And the guilt of not working and contributing to our family weighs heavily on me. I rely on my husband who works his butt off. He travels for his job, he's gone 2 weeks and home 1 week. We are used to it as that's all we know but when I had my transplant your look on life changes. He sometimes is home for my appointments and procedures and sometimes he's not and I go alone. He's ufortunately had to miss surgeries or even if I was sick and admitted he can't always be there. I miss him a lot too. And I have guilt that I'm causing all these major medical bills year after year...for life!

I did this fundraising page to just help get my bills paid all at once, start fresh and give us a break too. I've gotten some gracious donations from friends and family and complete strangers and I'm forever grateful but it hadn't quite been enough to pay everything. Unfortunately because of the way my transplant happened we never had a chance to send up a pre-transplant fundraiser. My lungs failed the night before my evaluation to get on the transplant list. Within 24 hours I was on a ventilator and given 2 weeks to live unless I was approved for the list and they found lungs. Thankfully to my husband and all the doctors I was listed with a high lung allocation score (LAS) and on day 12 of 14 I received the best gift. It's a feeling if happiness and also sadness to think someone passed in order for you to live and that their (in my case, her) lungs are inside you. So many emotions occur heavily the first 3 months, which I was told was harder than any military boot camp and I would have to agree. You can't prepare yourself and be ready to take what comes at you. The several new life medications play a major roll on your mental status as well as harsh stomach issues until your body gets used to them. Learning to walk again because you've been non ambulatory for a month...climbing stairs after I was released was impossible due to the weakness and no muscles or body fat for that matter. The pain from the surgery itself and so much more.

But to breathe without coughing and hacking up a lung, no oxygen that you drag behind you , the fear of suffocation slowly goes down but never truly goes away...it's still my biggest fear. I'm grateful for my donor. I'm grateful for my caregivers, my husband, family and friends who cared and lived in Jacksonville for 4 months (all that we had to pay for out of our pocket because insurance doesn't pay that stuff) as required per Mayo Clinic since we live an hour and a half away and so much can go wrong in the first few months. My mom took off work without pay because my husband had to go to work to make money. Just so many things you're not prepared for mentally, physically or financially. The burden on the caregivers and so much more they dealt with. My husband spent 1 month in the hospital with me non stop until I was released and able to go to the apartment in Jacksonville.

It just goes on and on.....

February 16, 2017

Today I had a follow up bronchoscopy, bloodwork and xray from when I was sick last month. My spirometry is back up. Bloodwork looked good except calcium was a little low and my Prograf (rejection medication) level was a little low. They upped my Prograf and I will go have blood drawn next week to check the level again. Xray looked great and Bronch looked good. They sent off some cultures. I go back next Tuesday for my follow up with my transplant coordinator and doctor in the office to go over everything. I also have my 6 month dermatology visit and an ENT follow up.

February 8, 2017

Headed back to Mayo Clinic next week for a follow Bronchoscopy, bloodwork and chest x-ray. We will head up Tuesday afternoon and stay overnight because I have to be there at 7am.

Then on Feb 21, I go to Mayo for my follow up appointment with my transplant doctor to discuss results. I also have ano ENT and Dermatology appointment. Hoping all goes well with dermatology and no skin cancers are found.

January 13, 2017

Yesterday was my bronchoscopy to see what was going on with my lungs and why my spirometry dropped 11%.

Doctor said my lungs were filled with mucus that is draining from my sinuses because they are pretty bad. He pulled out a big mucus plug that has been causing my breathing issues by plugging my airway. While I was there he gave me a dose of IV antibiotic and then sent me home on a antibiotic nebulizer that I will inhale in both my sinuses and my lungs until they get my cultures back and come up with a plan. But he didn't want me to go home over the weekend without anything. I have a follow up appointment with my transplant doctor in a week and also have my ENT appointment the same day that has been scheduled because of the constant pain and pressure I've been having. So that works out perfectly. But it's typical CF stuff from my sinuses that has caused the issues in my lungs.

January 11, 2017

Headed to Mayo Clinic Thursday to have bloodwork, x-ray and a bronchoscopy done.

Last week I woke up one morning with bad sinuses and a sore throat from all the drainage. After a week I was feeling better but unfortunately with all the sinus drainage it's now caused a lot of congestion in my lungs that I'm having a hard time getting up because of the thick sticky mucus I produce from having Cystic Fibrosis. Doctors will check my lungs, clean me out and send out cultures and maybe a biopsy if they feel it's necessary to check for rejection. As of right now I'll go home (or hotel if I go myself) after the bronch but if they feel the need to keep me then they will. Bailey will be at her favorite place Coleman Farms Pet Resort, which makes me happy. They have been great.

Plus I'll have to go to Jacksonville twice next week too...for a follow up with my transplant doctors and an already scheduled appointment with my ENT for the 19th, which is good because I'm still having pain and pressure. Wish there was a cure for CF

November 16, 2016

I had my 2 month post sinus surgery check-up yesterday. I have been having a lot of pain and pressure still that varies so I was curious to see if there was "crusting" and thick mucus up there that I can't blow out. Turns out the left side had a bunch of crusting that he removed and I have felt the relief on that side and have had no pain or pressure. The right side didn't really have crusting but there was a lot of thick mucus due to my CF and it was starting to block up my opening to my frontal sinus cavity. He suctioned it all out and also noticed that side is pretty tight. I go back in 6-8 weeks for another check- up but if I'm still having issues I'll go back sooner.

So far today, I've had no issues on the left side but still have that pain that starts in the right front sinus and runs down my entire right sinus. Hoping it will go away because it really puts a damper on the day and makes it hard to do things when you don't feel well from it.

October 19, 2016

Yesterday was my 1 month follow up from my sinus surgery. I had a lot of "crusting" that needed to be cleaned out and also the 2 stents that were in the opening of my frontal sinuses were pulled out too. It was not a pleasant visit and the drive home was miserable and long. Once I got home I took pain medication and laid down. Today I'm feeling good and can actually breathe through my nose. I have another appointment in a month to check them out again.

October 7, 2016

3 days of putting hurricane shutters up and preparing and helping neighbors and now we wait for Hurricane Matthew. We live in Port Orange, just south of Daytona and the current closest spot where Matthew will be closest to land at a Category 4 tonight and tomorrow. Then he'll head up to Jacksonville and loop around and come right back to us as a tropical storm.

Bags are packed including all medications and important paperwork in the event the roof comes off our house and we have to leave asap.

For those that live on the east coast...stay safe!

September 23, 2016

Just had my ENT 1 week post surgery follow-up. It was a painful visit. He pulled out 2 of the 4 stents and a lot of blood clots and scab material. I can't even explain what that felt like

September 19, 2016

If you can please share my fundraising page for my ongoing medical expenses, it would be greatly appreciated. I'm at the end using all the gracious donations towards this year's medical bills only. This hasn't and won't even be able to cover prescriptions or other expenses related to my transplant. I saved it strictly for hospital bills. As always, HelpHOPELive manages the donations and makes sure they go strictly to my transplant medical bills and also all donations are tax deductible.

Even though I have new lungs and mostly healthy, it doesn't mean I can live a normal life with no doctors appointments or expensive medications. For the restimate of my life, good or bad, I will always have high medical bills and medications. Also, with being on rejection Meds, I risk further kidney damage, and many other side effects that harm my body due to medication that keeps me alive. So I do the best I can and work hard with required exercise daily to stay as healthy and strong as I can.

Anything is greatly appreciated. Thank you ♡

September 19, 2016

9/18/16

Finally started to feel better this afternoon. I can breathe some out of my left nostril and still nothing out the right. Still a little pain off and on and bleeding a little but mostly when I try and do something. Should continue to get better now and I'm finally off all pain meds. I go back Thursday for ENT and transplant follow-up (blood work and chest x-ray). I guess I find out then when they will pull the stents out and when I can get back to running and crossfit.

September 19, 2016

9/14/16

Sinus Surgery was rough. What usually takes 2 hours, took over 4 hours on Wednesday. The doctor said my sinuses were really bad and he even had to put 4 stents that will come out later. All last night my sinuses were bleeding and I was nauseous and vomiting up blood. The bleeding has gone down a lot and I've managed to not throw up and even keep down some food this morning. I'm unable to breathe through my nose right now due to all the inflammation. I was asked if I wanted to stay another night or go home and I chose home, so I'll be discharged this afternoon. Robert was supposed to leave this evening to go back to work but he is staying till tomorrow evening.

September 1, 2016

On August 28, I just celebrated my 5 year lung anniversary. Thinking abut my donor and thanking her always for such a wonderful gift during a tragic event. I hope I'm making her proud.

In other news....

My transplant doctors have started me on an oral antibiotic called Cipro since my sputum cultures great psuedomonus, which isn't good but we know it's because of my sinuses.

On September 6th, I go to Mayo for my pre-op stuff...bloodwork, urinate in a cup to check for pregnancy (I can't even get pregnant anyway), register for the hospital since I'm staying overnight, and meet with the anesthesiologist and get approval for surgery based on bloodwork.

Then that same day in the afternoon there is a transplant celebration that Mayo puts on every year. This year they are honoring patients who are 5, 10, and 15 years post transplant. I'll be able to attend since I'm there anyway.

Surgery is still scheduled for Sept 14th.

August 19, 2016

My 5 year post lung transplant check-up is complete :)

I always stress and worry when they come around and then so relieved, happy, and excited to hear how well I'm doing after.

My lung function is excellent, x-rays look are great, my heart is doing just fine, kidney's are maintaining, and bone density is perfect! Blood work is all good but shows high thyroid levels so they ran additional blood work to check the function of my thyroid and all that came back normal so they will continue to monitor it.

Dermatology went great and waiting to hear about my results from gyn. Being on rejections medications puts you and a higher risk of skin cancer, which I've had since transplant, because you burn easily now. Also rejections meds make you more prone to cervical cancer, any cancer for that matter, so check ups are every 6 months, especially when I usually have abnormal results.

CT Scan of my sinuses revealed what we already knew and that is that I need sinus surgery to clean them out and open sinus cavities that have closed up again. Surgery will be Sept 14, as we had to do it asap since my sputum results are growing Pseudomonas, which comes from my sinuses and goes along with having CF. It's also what grew in my old lungs along with other bacteria that I haven't had since transplant. It's one of the very common bacteria in people with CF and not contagious to others unless you have CF too, then it can be passed. Because I have CF, my mucus is thick and sticky like peanut butter so just being on antibiotics doesn't kick the bacteria like it would with someone that doesn't have CF. The only way to help is go in and clean them out and open the cavities again. It last's anywhere from 6 months to a year before I need another clean out. Psuedomonas is a colonizing bacteria and loves dark, wet places so in time it comes back. It is hard to totally get rid of it when you have chronic sinusitis and CF. For my surgery, I will stay overnight for observation as I tend to have a different outcome everytime I have surgery.

August 19, 2016

5 year post transplant check-up is complete

August 9, 2016

I have 2 full days of appointments on Aug 15 & 16 for my 5 year post transplant check-up. Not only will have I tests for my lungs (pulmonary function tests, 6 min walk) but also my heart, kidneys, bone density, dermatology, gyn, blood work, x-ray, CT scan for my sinuses and meeting with that doctor to discuss when surgery will be, etc. Rejection Medications have some harsh side effects over time. I already have stage 3 kidney disease that they keep an eye on closely.

I'll be staying overnight in Jacksonville and while I'm at the hospital Bailey, our dog, will be in doggy daycare and I'll pick her up at the end of the day and we will stay in a hotel since I have to be back at the hospital early in the morning. It's easier than making the hour and a half drive back and forth.

August 8, 2016

A MAYO Clinic did a short story on my transplant...

http://sharing.mayoclinic.org/discussion/double-lung-transplant-recipient-beats-cystic-fibrosis-to-become-a-running-and-fitness-enthusiast/

August 2, 2016

Today was my ENT follow up at Mayo Clinic. My sinuses haven't changed and my pain and pressure has worsened. I will have a CT Scan on Aug 16 and a follow up with the doctor to look them over and then discuss when surgery will be to clean them out and get a fresh start for a while.

As of now it's been 11 months since my last surgery, which is actually a record and by the time I have surgery it will be over a year so it has been nice that I made it longer than 6 months.

Aug 15 and 16, I will be at Mayo all day both days for my 5 year post transplant check-up that includes all kinds of appointments...kidney check, bone scan, pulmonary function tests, xrays, dermatology, gyn, bloodwork, EKG, ECG, etc. They check everything since rejection medications wreak havoc on your body.

July 27, 2016

My ENT follow up appointment is coming up on Monday. We also hope to meet with the finance department because of 4 denied claims with insurance adding up to 26k due to wrong codes. We've been dealing with this for over a year now and it's a huge weight on my shoulders.

On another note, Bailey has been a great addition and has helped me a lot. I'm getting out of the house more and not just for running and crossfit. She's helped with my anxiety and stress a lot too. Her training is going well and we still look at her becoming a service dog for me and help continue to easee anxieties of going into public places wearing a mask and having people stare and make hurtful comments. Also, hopefully with her help, I'll actually get on an airplane and fly again. I still haven't flown since before my surgery because of anxiety of being alone and wearing a mask.

June 29, 2016

Just spent the weekend in PA for my Aunt's wedding. I met some of the wonderful people who have donated to my fundraiser and I'm so grateful to them! The littlest donation can help in a major way. It relieves so much stress knowing I have some help for a while with my transplant bills. Every year I hit my deductible and max out of pocket due to check-ups and surgeries. That alone is a lot to handle on top of the wonderful bills that come attached to my care.

Update on my sinuses...I changed my follow up appointment to Aug 1, as I'm having too much pain and pressure still. My doctor will probably order a CT Scan of my sinuses to see whats going on and then what we need to do next.

June 19, 2016

The past few days I've been pretty miserable with sinus pain and pressure. For those that don't understand, it affects your way of life...it's just a miserable feeling like a bad head cold or flu that you have to push through and go on with life. It leaves me drained and tired and wanting to just lay in bed all day. I'm also coughing up several thick mucus plugs, which is not a pleasant feeling.

June 9, 2016

On Monday I had a follow up ENT appointment. I'm still having a lot of issues, which is no surprise since it's 6 months from my last surgery. Anyway, I have a new ENT now as my other one retired. We talked for a bit and then he looked into my sinuses and pretty much all had the typical thick mucus in them and 2 sinuses cavities he could not see in because they were blocked. For the next 2 months he wants me to do nasal rinses with gentamicin and a steroid mixed into the solution. He said it the steroid should help with all the inflammation, which is also were if get all the pain and pressure from and why I can't breathe through my nose well. If I'm not feeling better by August then he'll schedule a CT scan so he can see what's going ok in the 2 sinus cavities he can't get into right now. If that shows a significant blockage then I'll probably have to have surgery to clean them all out again. His goal is to eventually get my to every 2-3 years for a clean out instead of every 6 months like it has been.

June 9, 2016

One month ago we picked up our new puppy! A female chocolate lab that we named Bailey. Bailey will eventually become a companion/service dog when she's a little older. She has been so good for me so far and has helped deal with everyday stresses on medical bills and issues, etc.

June 4, 2016

Headed to Mayo for an ENT appointment as a follow up from a couple months ago. Still having a lot of sinus issues even though I was on antibiotics. We'll see what the doctor has to say. It's been 6 months since my last surgery to clean them out.

April 26, 2016

Today I had an appointment with my dermatologists at Mayo Clinic to check a spot on my hand that I noticed last week. I'm always very cautious since I'm high risk for skin cancer due to my rejection Medications. My doctor said at this time it looks like inflammation from maybe a bite and to give it a month to see if it goes away. She said it didn't appear to be cancerous. Hopefully this will go away soon.

April 17, 2016

I had an ENT appointment on April 11, and 2 of my smaller sinus cavities are infected so my doctor put me on Cipro for 2 weeks in hopes of holding off surgery for a clean out. My larger sinus cavities look great and I haven't had any sinus pain or pressure since he also pulled out some large mucus plugs.

My husbands surgery has been postponed till July 19, due to an issue that came up in his blood work.

March 30, 2016

Anyone else having sinus issues due to all the lovely pollen this spring? Mine are not happy. Luckily my doctors said I could use Flonase and it has helped to where I can at least function and not so much pain and pressure. Can't wait for the pollen to end.

April is National Donate Life month. Please sign up to be an organ donor if you're not already. Without organ donation I would not be here today. I'm very grateful that my donor gave me her lungs when she unfortunately no longer needed them. She saved me and who knows how many others that day ♡. Please spread word...Donate Life ♲

My husband will be having surgery the week of April 11 at Mayo Clinic to remove a section of his colon due to diverticulitis. Please keep him in your thoughts.

March 4, 2016

On Monday, February 29th, I had gum graft surgery done on 4 different teeth (2 on the lower left and 2 on the lower right) due to gum recession. While under iv sedation, the doctor took strips from the graft site, which was my pallet (roof of my mouth) and then prepared the areas that needed them and laid the graft and sutured them in place.

For 2 weeks no brushing or eating hard, gooey or sharp food. No running or crossfit for at least a week. And I go back in 2 weeks to see if the graft took place.

So far 3 days post graft has not been easy. Eating anything but frozen yogurt just hurts, my entire mouth is in pain and overall I just don't feel well. I've spent a lot of time sleeping or just laying around other than going to my husbands GI consult up at Mayo on March 2nd, which we did find out he needs to have his Sigmoid colon resected. It's about a 6-8 hour surgery and 2-3+ day in the hospital and 2+ weeks of recovery if everything goes well.

Needless to say, it's been another stressful week.

February 18, 2016

Please send good thoughts and well wishes our way, it's been a pretty stressful weekend...my husband, Robert, was admitted into the hospital Saturday night in North Carolina for severe abdominal pain. A CT Scan confirmed acute diverticulitis. He's on IV antibiotics and pain medications for inflammation and infection and is on a liquid diet. No word yet on when he will get discharged but he will have to have surgery in the next month or two.

He had an appointment March 2nd at Mayo Clinic in Jax with the GI surgeon to go over all his medical records from the hospital in NC and see what needs to happen next.

I haven't been able to be with him in NC because of my check ups so it's been hard.

February 17, 2016

Monday (2/15/16) was my 4 1/2 year post transplant check up. It included x-rays, blood work, pulmonary function test (PFT), 6 min walk, GYN, Dermatology, and meet with my transplant coordinator and doctor.

Overall, everything is great. Creatine is a little high as it has been due to kidney disease from rejection medications so that is something we keep monitoring. Lungs look excellent and my PFT's are almost normal as someone who has never had a transplant. My doctors are always proud and contribute my health to wearing my mask in public, following orders, and my exercise regimen.

My doctors always say "I have nothing to say because your'e doing so well". I work hard daily to hear that. It's not easy to hear people comment and point when you where a mask in public (and most the time not nice), overcome daily anxieties, twice a day home spirometry, blood pressure and temperature to make sure I'm not getting sick or going into rejection, daily exercise that has to consist of at least 30 min of cardio per doctors orders (which is not an issue since I love to run and do crossfit), making sure to stay away from anyone sick and always sanitizing my hands and many more things such as protecting myself from the sun with clothing and sunscreen since I'm now prone to skin cancers due to rejection medications and more. I have sinus surgery twice a year to clean them out do to cystic fibrosis because if I don't that affects my lungs, I have GYN every 6 months because of being immunosuppressant I now have abnormal pap smears and I'm more prone to cervical cancer, I also have Dermatology checks every 6 months to check for skin cancers (to which I've had several already including 1 melanoma). And this time I had 2 moles removed as a precaution and they will be checked.

There is a lot that goes into taking care of yourself after transplant. Mentally and physically it is a job in itself.

Thank you to everyone for your support and donations to help with my ongoing medical expenses.

January 3, 2016

Happy New Year!

I have a 4 1/2 year post transplant checkup on February 15th, which is also my husband's birthday! Lol.

December 27, 2015

As Christmas approaches I think about my donor and her family even more. Another family holiday they are unable to spend with her and make memories. I hope they know she lives on in several others. She saved our lives so we could spend another holiday with our loved ones and make healthy memories after being sick so long. I can't say enough how grateful I am for her and her gift to me. I cherish my gift to breathe daily and do my best to take care of my lungs that gave me life again.

Merry Christmas to my hero and her family ♡ xoxo

December 17, 2015

I had my 2 week post sinus surgery check-up on Tuesday, Dec 15. My sinuses are clean and looking good right now. The doctor had to open the sphenoid sinus because it completely closed up, cleaned out both maxillary sinuses and frontal sinuses, etc. Now we wait and see how long I can go until they start acting up really bad again.

December 5, 2015

I had sinus surgery on Wednesday, Dec 2nd, and stayed overnight at Mayo as I usually do for observation and pain management. My doctor said he found some pockets that were hiding infection and got them cleaned out. I'm on IV antibiotics for 2 weeks and then I have a check up.

Yesterday when I got home I just relaxed and watched TV and today I did the same. I have been dealing with a lot of pain and pressure, sneezing, and coughing and a clogged ear. Tylenol hasn't helped. Hopefully tomorrow will be a better day.

November 21, 2015

I had an ENT appointment yesterday since I haven't felt much better on the oral antibiotics. The doctor scoped my sinuses and they definitely changed...for the worse. Two weeks ago when I was there the right maxillary sinus was clear and this time it was completely full of the thick, sticky mucus in addition to the other sinus cavities that are a problem. So, it's time for another surgery to clean them out along with 2 weeks of IV antibiotics. Surgery has been schedule for December 2nd.

November 19, 2015

I had my ENT appointment moved up to Friday instead of waiting to Dec 8. I had a rough end of the week and weekend with my sinuses despite antibiotics. We will see what he says.

Today I found out I need to have a gum graft on 4 lower molars. 2 on the right and 2 on the left. I have gum recession and if I don't get the graft it will get worse and cause serious issues. Because of my medical history, they have to get a consult from my doctors at Mayo so that will be done to see what the dentists can and can't do. I'll have IV sedation because of my anxiety and also I've never had any kind of dental work done other than cleanings so there is no way I'll be able to calmly sit there for an hour and a half to 2 hours or take lidocaine injections in my gums. I've had enough pain in my life and don't choose to endure anymore if I don't have to.

November 7, 2015

Cystic Fibrosis doesn't only affect the lungs, it can also affect the digestive system and sinuses because of the thick mucus that people with cf produce. I don't have digestive issues and since I've had a double lung transplant, my lungs no longer produce the thick sticky mucus, but I do have chronic sinusitis. This means that my sinuses constantly produce the thick sticky mucus that causes infections. I have a certain bacteria that I'm prone to and most other people with cf as well. It's not contagious (unless you have cf as we can pass bacteria to each other) but it becomes a problem for me and others with cf. There are various types of bacteria that each person with cf produce because of the mucus. Some deal with MRSA, while others deal with Psuedomonas, fungal, etc. I'm prone to psuedomonas (bacterial) and that is what my sinus cavities have that flare up from time to time.

At the beginning of the year they decided to flare up and caused issues in my lungs and I was hospitalized in January and again in March. I had sinus surgery April 1, to clean them out and have been fine since. The past 2 weeks though, my sinusitis has flared up causing a lot of pain and pressure. I decided to call my ENT and see if I can get in because he's never been able to endoscope my sinuses in the middle of the pain and pressure because usually I'll just suffer as long as I can. Luckily, he fit me in the next day so I drove up to Mayo on Nov 3. He said they didn't look pretty and with feeling bad it might be time to have surgery to clean them out again but first lets try antibiotics. We always have a regimen that we usually follow to see if we can help slow the infection and prolong surgery as much as possible. Sometimes it works and when it doesn't we do surgery and IV antibiotics. I go back Dec 8, and if I'm not feeling 80% better and he says they don't look 50% better then we need to clean them out. If I don't get them cleaned out then they continue to get worse and start causing infections in my lungs and then I get hospitalized. It's not fun, so usually I have sinus surgery every 6 months to a year. I had been making it yearly since transplant up until this past April, the surgery before that was at the end of September 2014, only 6 months in between. I was hoping we could go at least a year again but that may not be the case.

October 27, 2015

Today I had my dermatology procedure at Mayo Clinic. They removed a 5cm long area and not sure how deep but there are internal stitches and they glued externally so we wouldn't have to deal with stitches being pulled out. The entire procedure took an hour. They will send out the area to pathology to make sure the atypical mole is completely gone. I'll hear from them in about a week.

I included a picture in the photo album if you'd like to see.

October 21, 2015

Thank you to everyone who has contributed towards my medical expenses!

Monday I head up to Mayo for a procedure to remove more of the area on my back where the atypical mole was. This will be done to make sure it is completely gone and there will be no worry of it developing into a melanoma. I'm not sure how big it will be or how many stitches yet.

September 30, 2015

Had my Port flushed a few days ago and it still works great. In 6 weeks I'll have it flushed again and my also my blood drawn to check my Prograf levels and other blood work.

Blood is drawn every 3 months and my port has to be flushed every 6 weeks.

September 22, 2015

Update: My dermatologist from Mayo Clinic called in regards to the mole he biopsied last week. It came back as a dysplastic nevi or atypical mole. They are often benign at first and resemble a melanoma and over time could turn into one. I'm at a high risk of this happening because of my situation. The biopsy still had the nevi at the marginal edges so I go back Oct 26, and he will remove more of the area and stitch it up.

Unfortunately, my rejection medication make me extremely sensitive to the sun and very prone to skin cancers. The only thing I can do is wear sunscreen and protective clothing when outside and have check-ups every 6 months.

It's not the first one and definitely won't be the last. I have several scars all over my back from moles removed (cancer and non cancer) and a huge scar on my neck where I had a melanoma and they did a lymph node biopsy as a precaution. I've also had 2 on my face and 1 on my arm. The key is to catch it early like this latest one.

September 16, 2015

I spent the day at Mayo Clinic today for 4 appointments...transplant psychologist, dermatologist, GYN and ENT and I had my annual flu shot. Below are updates according to appointments...

Dermatology: My doctor did a biopsy on a darker mole that I had on my back. He actually removed it and they will send it out for pathology. I should know something within a week.

GYN: I just had my normal 6 month check-up and I'll get results in a few days. I go back in another 6 months. Since my transplant I've become high risk for cervical cancer. I've always had normal tests before transplant but being immunosuppressant now because of rejection meds, my tests have been abnormal. Everything is ok, they just watch more closely.

ENT: These appointments are always eventful, you never know what you'll get with my sinuses... I had adema (swelling), some thick sticky mucus (that's the CF) and some crusting that they took out. I have a little bit of biofilm (infection), which is typical for me and something we always try to keep from getting worse. My doctor put me on Cipro for 2 weeks to see if this would help with my stuffiness that I've been having, which makes sense with what he saw today. I go for a return visit in 3 months.

Pysch: A follow up to see how I've been doing since transplant. I have anxieties and worry about a lot, which is normal for everything I've been through and deal with.

That's pretty much it for now.

September 8, 2015

On Tuesday, September 15, I head up to Mayo Clinic for 4 appointments as part of my every 6 month check-up. I'll be seeing the Dermatologist, ENT, GYN, and the transplant psychologist (who I haven't seen since just after my transplant). Hopefully there will be no skin cancers and no need for sinus surgery yet.

August 28, 2015

Hard to believe that 4 years ago I was on a ventilator on day 12 of the given 14 to live and waiting on the word if the donor lungs slated for me were a go or not. I remember when one of my transplant doctors came in and showed me a text and all it said was "lungs good".

I'm very grateful for my donor in that she chose to donate life to others in a tragic event. Thinking of her and her family today as they mourn another year without her and hope they know she lives on in other ways ♡

Donate Organs. Donate Life. ♻

August 26, 2015

This was an article written last September...

http://fitinonline.com/2014/09/fitness-to-combat-cystic-fibrosis/

August 20, 2015

8/17/15

My 4 year post transplant check-up at Mayo Clinic in Jacksonville went great...spirometry is excellent, bone density is normal (they said that was amazing since I've been on Prednisone for 4 years), EKG and Echo are normal, x-rays were good, creatine level was a little high due to not hydrating well enough from all my yard work and exercise (I do have stage 3 kidney disease due to rejection medications so I have to be extra careful), and bloodwork is good. Next month I have 4 more appointments to finish my 4 year check-up with GYN, ENT, transplant psychologist, and dermatology (I think I have a another skin cancer spot creeping up too). Overall doctors are ecstatic and said keep doing what I'm doing because it's working...running, biking, raquetball, crossfit, etc and wearing my mask out in public and staying away from anyone sick.

Days like today make the hard work and hard days worth it. Never Give Up ♡