Living Life after your Transplant

@contentandwell, Responding to your statement about crafts. I also could not do crafts for a while after my transplant. I lost all interest in reading, which I had done daily up to that point. I could not longer focus long enough to read the paper, do the crossword or figure out the cipher, which I had also done daily. I initially spent a great deal of time dozing on the couch while "watching" television. I encourage you to give yourself time to heal and restart hobbies (or start different ones) as you feel interest and able. Hopefully your vision will stabilize for you and you can stitch again, perhaps with a few aids. Good luck to you.

@risemarya Rosemary, Thank you for generous helpfulness. I have not traveled in quite a while and am now champing at the bit. I had my first HE episode on Christmas Eve, 2013, and it took a year and a half for the doctors here to diagnose my problem. It actually took a hospitalist ordering an ammonia test. My PCP, hematologist and a neurologist couldn't figure it out. I suspect that was because otherwise I seemed so healthy. They thought it might be related to my having been a severe migraineuse prior to menopause, or possibly some type of seizure. So, not thinking of having additional episodes of HE we did go to Italy that following spring, but I have not traveled since then. We often went to CA in the fall to visit our son, and we did enjoy wine country (not anymore of course 🙁 ) but I have not gone since then. We are either going to travel somewhere warm in the spring, or to CA and onward to Hawaii in the fall with our son, he has plans to go there in October for a wedding. Right now it hinges on my getting a knee replacement. I saw the ortho doctor last week and he had an opening on one day near the end of March. I wanted to check with my transplant team to make sure my surgeon (a he) would say it was OK to do that soon, which he did. Now I can't get through to make the appointment so I suspect those are gone. Other than that he is scheduling in June, and I prefer to not be doing rehab in the summer so I will wait until fall, probably scraping the western trip. I really am not looking forward to another surgery but this is long overdue, it was supposed to happen in February 2015 but due to low platelets it had to be cancelled.

I am impressed that your insurance paid for your flights. It never would have occurred to check on that. When I was looking into going to Mayo I checked the airfares from Boston and they were not too bad, I came very close to listing there, but things worked out well for me and I could not have been happier with my transplant surgeon.

Regarding the mask, that must be a transplant center difference because it is in the write-up they give to post-transplant patients. They did not say to change it every 20 minutes, I read that elsewhere. They stressed the mask and also if flying to get up and walk every half hour or so. I have no idea what that would have to do my liver but perhaps they are just concerned with the possibility of DVT.

The transplant at MGH is very receptive to being called for any questions or sending questions over the portal. The only down side with MGH is communications though. When I leave a voicemail it seems to take forever for them to get back to me. I'm sure that would not be the case with an urgent matter, or I hope it would not.

I do still have labs weekly, we call it visiting the Vampire. Actually the phlebotomist is really nice and with such frequent appointments she is becoming like an old friend. I think when they are comfortable that my creatanine numbers are stable that might become less frequent.

JK

@2011panc , Thank you for your response. I do still read but my eyesight actually changed a long time ago after I hit 40. I find I cannot just do handwork alone, I always did it and watched TV at the same time. That's too difficult now, despite having reading glasses, plus my fine motor control has never been great and it's worse than ever now. My handwriting is almost illegible. Right now the only "hobbies" I have are going to my health club (I did water aerobics today and then Pilates - phew, I'm exhausted!) and spending time on the computer. I love to cook too but that is less frequent these days with just the two of us. I cook, but very basic meals, and I rarely bake.

@contentandwell, JK, I cannot begin to imagine traveling to Italy with that HE occurring. (I had to look up hydrocephalus). It sounds like you have a little bit more surgery before you are completely well again. I think I know what you mean about not wanting surgery again, so soon. Maybe the planning and schedule will work in your favor. As active as you are, maybe rehab will go relatively smoothly for you.
I don't know if the insurance paying is routine. I had to be flown out of ICU to Mayo Rochester, 800 miles. Mayo was the only place that could treat my condition. So, I think, the insurance payment had a lot to do with the fact that HAD to get care in Rochester. I was originally listed here, but due to complications, I had to be removed from transplant list. My transplant team got me an appointment at Mayo - but I ended up in ICU instead. It was a life - death situation. That was 8 years ago this week! I strongly suspect that all things insurance have changed since then.
I usually will use the online message portal to share medical updates or simple questions. If there is something that is a real health concern, I will make a call. And my PCP and his nurse are very supportive.
O Yes - the vampires love liver patients!
I hope you have a nice weekend. Enjoy that healthy liver 🙂
I have daffodils blooming here in Ky. I may need to cry on your shoulder when they all freeze on Sunday.
Rosemary

@contentandwell It sounds like you are fast becoming an expert on healthy living with your liver transplant. Keep on living well and keep on sharing 🙂
I was once told about a girl who would not touch money. Now, I don't have much to handle! but when I do, I am a firm user of hand sanitizer. (Handitizer, as I've heard kids say it)
Rosemary

@rosemarya Rosemary, I am trying to get more knowledgeable as I go along. Stupid me, the thought of money never even occurred to me!

@rosemarya Rosemary, when we went to Italy I had only had a couple of short lived HE episodes, plus the husband in the couple we are close with and frequently travel with is a doctor, albeit a OB/GYN, but he has a lot of general knowledge. He, along with a friend in NYC, thought my problems were due to medications -- a BP medication, Vesicare, and one other, maybe cholesterol, and suggested I get off of those meds. My BP was not that high and now generally goes from the teens to 130 on the high number and is in the 60's on the lower number so it is not a problem. I told the PCP I had then and went three months with no problem so we thought that must have been it. Unfortunately after three months I did have another episode, so obviously it was coincidental that after stopping them I went for so long without an episode. My episodes almost all lasted a matter of hours. I would go to bed and wake up fine.

That really is great that they paid. I had very low hemoglobin and hematocrit counts in August and ended up going by ambulance from here in NH to Boston -- the doctor at the hospital in Manchester was obviously not comfortable with me. The ambulance ride, chatting away with the EMT was the best part of my problems! I must have been one of his easier patients because I felt fine. They sent me by ambulance though because apparently if my numbers dropped any lower I could have had cardiac arrest. I just felt debilitatingly tired. As you know, it is a bit scary to discover you are in such a life-death predicament. After my initial alarm though I felt pretty calm about it.

I hope you have a good weekend as well. Believe it or not the last three days the temperatures here in NH have been 68 - 69, warmer than CA or FL from what I have seen. My son lives in southern CA so he is always giving me a hard time about how cold it is here but he goes to one ski area or another almost every weekend, this weekend at Mammoth, but being cold to do something you love is different than just living it it every day for a number of months. I know these temperatures will end shortly and there will be more snow, something I presume you see very infrequently in Kentucky. It will be May before we see blooms up here.

JK

@contentandwell, Please. I beg you - do not obsess over the money/germ thing! I meant for it to make a point, that we can become overly obsessive about our contact with germs. Fact is germs are going to be everywhere, and if we take our health and our new life seriously, we will take the necessary precautions per our post transplant directives. And we will continue to share and support each other.
Eat healthy, stay active, clean your hands, and Enjoy Life 🙂
Rosemary

@rosemarya, Rosemary, I really am not obsessing but trying to be cautious. I went to church yesterday, the late afternoon mass, and ended up shaking hands with quite a few people. When I got out to my car I used sanitizer on my hands so I think that helps. In the meantime I do not touch my face or anything.
Thanks for your post. I pretty much am enjoying life, but I have to admit, not having an ounce of mesomorph in me I am getting really weary of going to my health/sports club. I'd rather be home curled up with a book, or checking things out on the computer, or a host of other things like being social with non-club friends. I went a lot last week, including strong workouts yesterday and Friday, so today I am taking off. I swear, Friday and Saturday's water instructors were over-caffeinated. Phew.
JK

@contentandwell, Hint - carry a small hand sanitizer in your pocket or purse. I do 8:15 mass, and enjoy my 'safe spot' while playing my violin. However, during lent, we will not be using instrumental music, so I'm joining you in the congregation!
Rosemary