My Transplant Recovery – Phase-1

Yesterday, August 2, 2016 was a huge milestone in my recovery, it was the end of my first phase of recovery – “Home Health”. I was first discharged from Speech Therapy a few weeks ago when I had surgery on my paralyzed vocal chord, then from HH-Nursing last week, then last but certainly not least, Physical Therapy on yesterday. Home Health played such a big role in my recovery. The Speech Therapist was awesome helping me with vocal and swallowing exercises. This was a really big issue for me as with a paralyzed vocal chord, you can not speak which is frustrating and your airway is unprotected. So for me, swallowing liquids without aspirating was extremely difficult. I could swallow most solids and a spoonful of pudding with each pill worked really well to swallow my meds. The vocal chord surgery is an immediate but “temporary” fix – it should last around 6-months and I am hopeful that my vocal chord will heal in that time. 

If I had to choose one piece of advice to give anyone for post-transplant recovery so far, it would be to START MOVING ASAP. This has made the biggest impact for me.  Starting on day one in ICU, I could hardly wait for the PT’s to come in to work with me and as painful as the work was, I knew that I needed to push hard in order to get my independence back. So every day, in addition to their plan of care, I would set a small personal goal for myself and I would ask them to help me with accomplishing that goal – really small things but as small as they were, when I could accomplish them, I felt such a sense of relief. This carried over at home with my awesome Physical Therapist working to help me gain independence by teaching me simple tasks like dressing myself, getting into and out of the chair, shower, & bed, to opening the dishwasher (little things you would never think would be difficult) etc. She worked with me on all the basics like getting around the house safely by walking using the walker, eventually advancing to a cane, she taught me numerous exercises moving up to the use of light weights all to build strength and flexibility and I continue to do these exercises and walk in my kitchen/dining room twice daily for at least 10 minutes. For me personally, my independence is everything so this was a big deal.

Sawyer was ready for this contraption to go away.

Sawyer was ready for this contraption to go away.

The following is a list of some of the other things I’ve learned so far in my recovery process and I’m sure I will learn a lot more as time goes by:

Listen to your transplant team and do exactly what they tell you – they are the experts and your team knows YOU. Remember that the post-transplant recommendations vary from center to center so you may hear other transplant recipients say something different from what you have been told by your team but always follow your transplant team’s instructions.

Stay away from germs! Hand washing and hand sanitizer are your best friends. Remember that transplanted organs are foreign to your body and it is your body’s natural response to fight them. The anti-rejection meds decrease your immune system to prevent your body from fighting against the new organs. But in turn, when your immune system is compromised, it can not fight off illnesses some of which, can cause your body to reject the new organs. So, it is imperative to prevent contact with sick people and to use hand sanitizer & proper hand washing at all times.

Eat healthy and follow your transplant team’s recommendations for diet and food preparation.

Get over saying “yes” to everyone. Taking care of  your precious. “newly recycled organs” and making every effort to prevent rejection of the organ/organs is top priority! If anyone thinks that your “new normal” is “silly” or “overkill”, ignore them – it’s just not worth it. You’ve most likely waited a very long time for this life-saving gift, do not ever take that for granted.

Take care of your incisions as your transplant team instructs you to.

Rest! Your mind may play tricks on you. I have been sick for many years and been able to do less & less over time. But now, I feel better and my mind wants to do so many things but my body is simply not ready – it is hard to believe how tired your body gets from the exercises and normal daily activities. When you feel tired, your body is telling you to stop and rest. Yes, your body needs activity and exercise but it also needs plenty of rest in order to heal so please listen to it… the time will come soon enough to do the things you want.

LIVE and try not to worry. Push fear out of your mind. This is a tough one because with recovery from a transplant, comes a complicated, life-changing “new normal” and there is a lot to learn and remember. Now that I finally feel like doing some of the things that I haven’t been able to do for so many years, I am not to the point in my recovery to do them yet. This sometimes makes me anxious because the fear of organ rejection creeps in from time to time and I worry that I may never be able to do those fun or even simple things with my family & friends. I have to be conscious to push these negative thoughts out of my mind and remind myself to be patient because my recovery is too important to risk anything. It is a fine balance especially as time goes on because most of us go through the transplantation journey so we can LIVE but you do have a lot of new rules & restrictions to live by. My thoughts are to follow your team’s guidelines carefully but try not to obsess on them, you do not have to explain every detail of your life to everyone – just LIVE and take it one day at a time. Worry is a bad habit and causes stress and stress is unhealthy (I’m still working on this one). 

Take your meds! Be careful when you fill your weekly medication sorter and take the time to double-check each & every dose. Set reminders to take your medications as prescribed. Remember these medications are your “life-line” and are the only thing to help prevent your body from rejecting your new organs. This is a BIG part of your “new normal” it must be a top priority.

Check your vital signs and temperature as instructed by your team. This is essential for many reasons including early detection of organ rejection.

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And lastly, Be grateful!!  Wake up with a grateful heart every day even if you are having a really rough day AND you will go through ups and downs! Just remind yourself where you were before transplant and the precious gift of life you have received. This is so important… AND No, it isn’t always easy. Recovery from such a big surgery certainly can be a roller coaster but try to focus on staying determined to push through it – determination and a grateful heart helps promote a positive mindset which in turn helps to lower your stress level. I truly believe that this is essential to healing and overall good health.

My body is in the process of going from one extreme to another so quickly that I can not completely wrap my mind around God’s miracles. Two new functioning organs – my newly recycled Liver and kidney – precious, precious gifs of life! I’m not going to lie, recovery can be tough but I feel so blessed by these gifts that it is worth every bump in the road. No matter what, every day is better than before – reminds me of this old quote…  “I am better than I was yesterday but not as good as I will be tomorrow”.

I know that God is carrying me and my family through this as He has for so many years prior to my transplants. I am grateful beyond measure to my donor angel for making the decision to be an organ donor and for saving my life.

So be truly glad! There is wonderful joy ahead, even though it is necessary for you to endure many trials for a while – 1 Peter 1:6

If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor #NewLiverNewKidneyNewLife

As always, many thanks for our prayer warriors out there, you know who you are!!

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