Live Life then Give Life, Please be an Organ Donor.

Thursday, October 5, 2017

October is Check Up Month

Hello World!

Well October is always a month of doctors appointments. I had my CF Clinic appointment the other day. It didn’t go as well as I would of liked. My blood work came back all messed up. Kidney function was way off.  Normal function level, I was told, is around 1.24. My levels came back at 2.43. Yikkeesss! Normal Liver function, again I was told, is about 1. Mine came back at 2.33. Yiiikkeeesss!!! Surprisingly my potassium level was still in the normal range since I have felt off for about a week. In the past when my potassium level was high I get this tingly burning sensation in my hands, feet and lips. And I have been experiencing this awful sensation everyday for about 5 days now. The problem is I get this same tingly, burning sensation when my Tacrolimis level is high as well. Tacrolimis is one of my anti rejection medications. A normal, for me, is 10-12. My level came back 23.6! Way high!!!! Too high. A toxic high. A plus during clinic my PFTs - lung function test - was at 37%. The highest it’s been in about a year! So I’ll take that!!!

So major dosage change with my Tacro. And more labs next week. The thought is once my Tacro gets back under control my liver and kidney functions will no back to my normal. If not, then we will do more tests. This high Tacro level is also messing with my pancreas and causeing me to have high blood sugars as well. Which means now I have to have a meeting with an endocrinologist about diabetes again. I’ve been down this road before - hopefully this is something that clears itself up as well.

I also have an appointment with a dermatologist this month. I have 2 spots on my face that I think could be skin cancer. I had a spot removed about 2 1/2 years ago on my face that was cancerous. And these look just like the one that was removed. Of course this appointment is like 4 days before I’m suppose to be attending a friends wedding - so hopefully I don’t look too much like Freddy Kruger.

And at the end of the month I have a Transplant Check up in Cleveland. Assuming we get everything figured out by then it will just be routine blood work, chest X-ray, lung function test and meet with my team. Should be a one night stay with no problems.

Overall I actually feel good. I had/have some kind of bug that knocked me down for a little bit with sinus pressure, chest tightness, coughing, sneezing, runny nose, and nausea - ya know the fun stuff! The only thing really left is a runny nose and I still don’t have much of an appetite. I was swabbbed for RSV at my CF Clinic. I’m still waiting for results. But the Drs are thinking it’ll be negative. I’m hoping that this sickness has run it’s course. Every winter I’m at a high risk of pneumonia so I don’t need to be down going into cold weather. If we get everything under control I can move on to the holiday months with no worries. That would be wonderful!!!

Breathe Easy

Thursday, August 3, 2017

5 Year Check Up

Hello World!

Just had my 5 year check up with my Transplant team. Statistically speaking, only about 50% of lung transplant patients are still alive at 5 years. I know quite a few friends who didn't make 5 years and I know quite a few who are even farther out than 5 years. I'm oh so very thankful to still be here. Forever grateful to my donor.

I was hoping to see an increase or at least stability in my lung function. I also went to my appointment knowing I needed to bring up the issues I had been having in the last month with my kidneys. The lung function side of the appointment went great. I actually had a 2% increase. And in Lung Function Land we celebrate even the smallest improvements. It's better to be going up very slowly, then down at all. As for the kidney side - nothing good happened!

I figured I had a kidney stone. I've had one in the past and it felt the same. After my routine labs came back it showed my white blood cell count was sky high, we immediately knew I had a kidney infection. I also had a low grade fever - another sign of infection. So step 1 is control the infection and step 2 is to figure out if there is really a stone or just and infection. Step 3 would be if there is a stone, how do we get rid of it.

When dealing with Teams of doctors - it's a small group, so I don't always see the same pulmonologist. This particular Doctor in CLE, I have seen before. He's not my favorite. He's a great doctor, very knowledgeable and he's a nice guy. But He's possessive over his patients. If he sees you and diagnoses you with something - he likes to the run the show, he doesn't like input from other doctors. This doesn't work for me. I need  someone who is open to working together with my CF team back here in NH. The other big thing he does - that I don't agree with - is his first line of defense for everything is a hospital admission. And my thought is it's so you are right there for him to watch over and control everything.

Now I've been called stubborn and hard headed before about medical stuff. But that's because - yes you are doctors and know more than me about these diseases and infections and such BUT I know more about ME than they ever will. I know what I'm capable of and I know all the pains and pings in my body. I've been honing this skill for 31 years. I will agree when I know a hospitalization is necessary - I've done it a million times. But I really felt like we were jumping the gun this time. And as a patient you need to fight for yourself, every time. I'm not trying to be a pain in the ass patient but I'm also not just going to sit back and blindly follow everything you say - I'm not a sheep.

He wanted to admit me immediately for my kidney infection. So I fought back against being admitted in CLE. I reluctantly agreed that I'd do an admission but I wanted to do it at home in NH. After some back and forth with my CF team in NH and the Transplant team in CLE we made a deal - I could come back to NH with the intention of being admitted through the ER immediately upon my return. And CLE would give me oral antibiotics in the mean time to hold me over. Now this is 1 night we're talking about. It's not like I was putting it off for a week or something. So we headed back home.

After 1 day of oral antibiotics I felt a thousand times better. No more pain, no more fever - so now I'm really annoyed at the thought of being admitted when oral antibiotics could work. I know it takes more than 1 day for antibiotics to take its full effect but improvement after 1 day is a good sign. So on our way home I talked to my CF team - who haven't even seen me, they've just been going off of what the CLE doctor said - and made a new deal with them. I could go home, not to the ER, and then the next day go for a CT scan of my kidneys to check for stones and then see them in person for an
appointment and go from there.

So after I got home, the next day I went in for my appointments. I do have a stone. BUT they don't think it's in my kidney. They think it's out side my kidney, more in my abdomen between my kidney and ovaries. So a little weird that I had back pain and not abdominal pain. Further blood work also showed that my white blood cell count was going down. So the oral antibiotics were working for the infection. After another long day at the doctors it was decided that I'll continue the oral antibiotics for another week and a half, no hospital, more blood work in a week, and as long as the stone doesn't move and cause me more pain we will leave it alone for now. And since they are pretty sure the stone is calcium based stone, a new diet change.

Eventually I may have to have the stone removed but at this very moment my creatinine level is 1.7, most likely because of the infection. A normal level is less than 1 and my normal level is about 1.2. So the next test they want to do once my level goes back down is another CT Scan but with contrast. Contrast makes  your insides glow during a CT Scan but it can be hard on the kidneys.

As for the diet change... again! I now have to be careful about the amount of calcium I consume. I'm taking in too much for my kidneys to process and that's where the stones come in. So calcium is limited and potassium is still limited because my kidneys can't process that very well either. The biggest change with watching my calcium is going to be my Milk intake. And anyone who knows me, knows I can easily drink a gallon of milk a day on my own. Love milk. I also have to be more vigilant that I'm still eating enough protein and  fat, since a big portion of the fat and protein  in my diet was coming from milk. I only drink whole milk. Less milk, cheese, broccoli, potatoes...😭 They keep limiting my favorite things!

Overall my 5 year check up went well. Lungs are looking stable and kidneys, well, they are still a work in progress. There maybe a time in my life where a kidney transplant is necessary because my kidneys will stop working all together. Right now, I have stage 3 kidney failure, they are working at about 40% of normal. A possible kidney transplant is something I've known that  I might need since I had my lung transplant. Unfortunately they do tend to go hand in hand. Many lung transplant patients also have had a kidney transplant. It's just the way those magical antirejection medications work.

But for now me and my broken and recycled parts are doing just fine. Going back to work part time and trying to enjoy the rest of the summer. Next up, more possible skin cancer, I have an appointment to get that checked out soon! The ride never ends!

Breathe Easy


Saturday, July 22, 2017

5 Years

Hello World!

Today makes 5 years. 5 bonus years in this life. 

5 years ago I was laid up in the hospital with a CF exacerbation for the umteenth time. My typical routine was 2-3 weeks in the hospital and 1 week out. I weighed about 80lbs and my lung function was about 13-15% depending the day. I sat around on 8-12 liters of continuous flow oxygen with my heart rate resting at 130-140. I used a wheelchair for most of my traveling. I ate most of my food through a tube that ran almost 24/7. I needed help bathing, getting dressed. I could no longer drive. I was barely allowed to be alone. Transplant was really my only option.

I'm asked all the time about my donor, and whether I know who it is or not. A while back I wrote a letter to my donor's family. It took me a long time to write it. I have never heard back from them - and that's ok. I said what I needed to say and I left it up to them if they wanted any kind of connection. So I don't have any idea who my donor is. 

I am forever grateful for their decision. Their last selfless act in this life was my new beginning. While it's been a bumpy 5 years. Statistically speaking only 50% of lung transplant patients are still alive at 5 years. I don't like statistics. Statistically speaking I should have already died 3 times. I don't like when people tell me I can't do something - call it hard headed, call it courageous - I don't care. I'm not looking to be one of your statistics.

Because of my Donor's selfless act I've been able to do a lot of things I had written off. Getting married for 1, buying a house, the possibility of a family. While it's not all a bed of roses and I'm currently battling chronic rejection - I'm not giving up. I've gotten a taste of the good life and I'm not ready to give it up. I hope to be able to celebrate 10 years post transplant.

Everyday is a gift. I know, cheesy, but it's true. Your body is valuable, take care of it. A 'thank you' will never be enough - it never has been. Everyday I get to live this life is because someone else decided they wanted to live on once it was their time to go. So I plan to do that. Live on. Keep going. Even if my speed is a lot slower than others, forward is still forward. All my days also belong to my donor. Together we have accomplished great things. And together we will accomplish so much more.

Here's to you, my donor, and all you have done for me. 5 years.

Breathe Easy 

Monday, April 10, 2017

I May Whine About It

Hello World!

As I dive into my newly hatched work out plan I immediately hit a giant wall. Oh yeah, That's right - my lungs suck - breathing while exerting myself is really really really hard. Dang. So the smooth plan I came up with has been quite bumpy already. The elliptical is kicking my butt... Hard. Even while I give myself that extra oxygen flow with my home concentrator pumping an extra up to 5 liters of O2 in me, my O2 levels are still way down to 82/83 percent. Now the normal is 99/100. So big difference. One of the best ways I can describe it to you is next time you work out or exert yourself - put a clothes pin on your nose and then only breath through a straw. That will give you an idea of how my lungs work. I would love to quit! But, how am I going to reach my goal with an attitude like that. So I drudge on.

I'm glad I workout alone in the mornings so I can yell in frustration, swear I'm never doing this again, sometimes shed a few years of anger, yell about how unfair things are and what did I do to deserve this, whine like a toddler that everything sucks. All these things I'm feeling are totally normal. And this is a great outlet to get out all that frustration. It's not easy. But the next day, I stair at my enemy (the elliptical) and say "let's get this over with." It's like a weird torcherous game  I just keep putting myself through. 🤔. So if you have any advice that helps you get through those days you are ready to throw in the towel, leave them in the comments. I'll take all the tips and tricks I can.

This week I finally get to implement my afternoon walks as the weather is finally sunny and out! Last week I didn't get one walk in because it literally rained everyday and was still in the 30s. Here's hoping the walk later today goes smoother than that dang elliptical!

In other health news, I just completed my 2nd to last IVIG infusion. While I don't really feel like they are doing a whole lot, the Cleveland team and I decided that since I only had 2 left to just go ahead and do them - can't hurt. So I only have 1 left in May then we wait to see what my lung function does without it. I think it will either get better or stay the same. It better not go back down! In 1 month I go back for a CF clinic visit. We will do PFTs (lung function test) then and I will get an idea of how I'm doing since my April 1st check up in Cleveland.

Outside of the health world, I've started taking online classes for Medical Coding and Billing. Once I complete this course I will be able to find myself a new job. The idea behind taking these online classes is so I can work from home. A job from home will give that flexibility I need  with frequent doctor visits and such while still being able to earn money and feel valuable. It's an exciting new chapter. Good things come to those who work hard and not give up.

I may whine about- but not give up.

Breathe Easy

Tuesday, April 4, 2017

Celebrate the Small Victories

Hello World!

So I haven't said much - health wise - lately because I didn't want to jinx myself. But since about mid February I have been feeling really well. It was super weird, I just woke up one morning and I just felt Good. And feeling Good isn't something I've felt in months!! So I've been patiently waiting for something else to go wrong. And here I am, almost 2 months later and my latest lung function test shows a 3% improvement! How about that - 3%! Hard work pays off.

Now 3% isn't a lot but we have to celebrate the small victories. My tests are FINALLY moving in the right direction. I really wasn't sure what I was going to do if the results were worse. With that being said, it's time to institute a strict routine. Over the last couple months I've been better about exercise but with the winter weather it's really hard to stay on track. 1 cold, crummy day can throw you off for days. As we move towards spring and nicer weather, it's time to kick it up a notch. I'm going to go from exercising once a day to twice. I have my elliptical that I will use in the mornings and in the afternoons, Brian and I are going to start going on daily walks. These daily walks will be good for everyone in the family, me, Bri and the dogs. We've all been cooped up inside all winter. Time to get out there and enjoy the season!

I plan on using this trip to Cleveland as my starting bench mark. I have to go back in 3 months. So in 3 months my goal is 5-10% lung function improvement. I really hate being put in a box and told how things are - so if I can prove Doctors wrong and raise that function I'll be on cloud 9! It wouldn't be the first time that doctors tried to tell me how things are and that they won't change and I did it anyway - I wasn't suppose to survive the coma I was in for 45 days, not only did I come out of that I was out of the hospital 11 days later. Don't live life with limits. You can ALWAYS do more.

In the other parts of my life as we move towards spring Brian and I are getting ready to build our very first goat pen! We are also looking into getting some chickens and ducks. I'm also going to try my hand at gardening. We are thinking about planting some apple trees. We already have kiwi vines and blueberry bushes on our property. We are trying to move towards a more sustainable way of life. We are by no means going "off the grid." I might die without my junk reality TV. But we are working towards raising our own meat and crops - homesteading - and eventually have solar power. Be more independent. Next year we are going to make our own maple syrup! Which for me will be a first, I can't believe I've lived in New Hampshire my whole life and I've never tried making my own syrup! Both of us like the idea of farm life and we plan on turning our little piece of earth into our safe haven for of us to grow old together on.

We aren't stopping or slowing down at all. Having these big plans for our future helps me keep my feet on the ground and pushing forward. I'm not going to let my medical circumstance dictate how I live my life. I Can't wait! Bring on change!!

Breathe Easy

Thursday, February 23, 2017

Got to Start Somewhere

Hello World!

So about a week ago I celebrated my 31st birthday and Brian celebrated his 35th! It was wonderful! Since Brian and I's birthdays are only 10 days apart we basically celebrate in little bits for 10 days. We had a nice family dinner one night with people from both sides of the family, we went to see The Blue Man group in Boston, had a lunch out with some friends, and splurged for a new PlayStation 4. All in all we both had great birthdays!

As for my health, about a week ago I woke up feeling great. Like better than I have in a long time. I'm not exactly sure why. I'm only on 1 new medication, symbacort - which I really don't think would cause this big change. I'm on schedule to see my CF team for a clinic on March 13th. I'm hoping when I do my lung function test that day it reflects how I feel. I would LOVE to see an increase in my numbers. Or if nothing else it stays the same, I don't know what I'll do if I see it drop again. That being said, my CF team has always told me - as well as my transplant team - it's not always about the numbers. How I FEEL means more than anything else. So I'll take this great feeling and run with it. The best thing I can do is while my lungs feel good - work my muscles! That means back on the elliptical. I'm nervous but ready. Got to start somewhere right?

No other news really. Just going day to day at the moment. With the weather this week being in the low 60s I'm so ready for spring and summer. Longer days with bright warm sunshine is what I crave. Working on our future goat pen is a project I'm excited to get into this spring. Along with planning a party for my 5th year anniversary for my lung transplant. Looking forward for the coming events.

Breathe Easy

Saturday, February 4, 2017

It's Official

Hello World!

Well it's official I am in Chronic Rejection.

So what does that mean... well.... the blunt answer, my donor lungs are failing. But there are still a lot of things up in the air.

I just had another appointment in Cleveland. My lung function was stable at 28%. While that's not really where I would like it to be, it's better than hearing it went down again. While out there I had an oximetry test done. It's a test where they see what your oxygen levels do while you are being active. This test showed that I need to be on oxygen when I'm out and about doing things. I'm also going to need oxygen when I sleep at night. I'm not excited about having my old friend back. However - I'm hoping the oxygen at night will help me sleep better and ultimately give me more energy.

There really isn't a whole lot left to try, the rejection has made itself at home and it's not going anywhere. So we are now in Maintenance Mode. EVENTUALLY I will be listed for another transplant, but we are not there yet. My Drs exact words were "lets milk these lungs for as long as we can." A 2nd lung transplant is complicated and not done that often. There is no telling how long it'll be before they list me or how long it'll be before I need oxygen all the time. Life just doesn't give you those answers.

I'm not sure what was worse, hearing that my body is failing, and well we know what that leads to, at 22 years old or 30 years old. I think this time around it's mentally tougher to deal with. I had already knew where my life was headed at 18, I accepted that. I accepted that I would probably never marry or live on my own or even see 30. It just didn't seem in the cards for me. Now, I have an amazing husband, a house of my own, I got my life back. Just this past Summer I was hiking up a mountain - now stairs are my worst enemy. So dealing with this drastic change has been a lot harder this time around. I got a taste of the good life and I'm not ready to give that up.

That being said, if you know me, you know I'm just going to keep doing me. I learned a long time ago that if I want to do it, I can - even if I'm slower at it or it takes me longer or I have to ask for help.  I'm not going to live in a bubble. I'm still going to go out and enjoy life. I'm so grateful for the past 4 1/2 years of awesome health - I would of been gone a long time ago if it wasn't for my donor. These bonus years have been amazing and I'm not done living yet. I may have bad days or feel depressed sometimes but at the end of the day when I close my eyes, its a way to reenergize and start over.

And to the questions I get asked most often...
- "What's next." I have no answer for this. I don't know. I'm just going to take it a day or week at a time. That's all I can do. I can't dwell on the negative- that's physically and emotionally draining.

-"How are you doing/feeling" - I'm fine. I'm feeling good. I'll let you know when and if I'm not feeling good.

- "What can I/we do?" Nothing. There is nothing anyone can do - this is just my life.

I appreciate the worry and love everyone has for me. But I'm not made of glass, I'm not on the verge of breaking. Please, don't worry so much. My Dad told me a long time ago - Until they invent time machines, if you can't change it, don't stress about it. And I live by those words. I try not to let too many things bother me. I'm still going to laugh everyday. I'm still going to go to work. I'm still going to do things that make people say "should you be doing that?" I'm still going to be me - I don't know how to be anything else. I'm always willing to answer or at least try to answer any questions you might have about CF or Transplant. I'm an open book, 95% of the time.

Breathe Easy